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POLICY ISSUES AFFECTING THE MEDICAID 
PERSONAL CARE SERVICES OPTIONAL BENEFIT: 
APPENDICES A through D 


Simi Litvak, Ph.D., Research Director 
Jae Kennedy, M.A., Research Associate 

December, 1991 

WORLD INSTITUTE ON DISABILITY 
510 SIXTEENTH ST 
SUITE 100 
OAKLAND 
CA 94612-1500 
USA 
VOICE OR TDD 
510 763 4100 
FAX 510 763 4109 

 

MOVING TOWARD EQUALITY 


APPENDIX A: 


SUMMARY OF EACH PERSONAL CARE PROGRAM 
BASED ON 1984 AND 1988 QUESTIONNAIRES 




Appendix A, Page 1 

Personal Care Program 
Division of Medical Assistance 
4433 Business Park Blvd., Building M 
Anchorage, AK 99503 
(907) 561-2171 
Program Implemented: 1986 


Interviewee: Barbara Crane, Personal Care Coordinator 
Fiscal or Calendar Year 1988 Data 

Total Expenditures: $250,000 
Medicaid Expenditures: $125,000 (50%) 
Other Expenditures: State $125,000 (50%) 
Total Number of Clients Served: 94 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: individual providers only 
Entitlement Program: yes 

Program Eligibility Requirements 

Maximum Client Income: na 
Age Groups Eligible: all 
Disability Groups Eligible: none specified 
Other Eligibility Requirements: none 

Attendant Profile 
Independent Providers 

Hourly Wage: $8.30 
Benefits: na 
Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: no 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, care and 
assistance with prosthesis, range of motion, foot care. 
Household Services: light cleaning, laundry, meal preparation and clean-up, meal planning. 
Communication Services: none. 
Transportation Services: medical escort only. 
Short-Term Services: none. 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: no 
Services Available 7 days per week, 24 hours a day: no 
Service Limits: none 
Average Weekly Hours Provided Per Consumer: 6 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 2 

Personal Care Program 
Dept. of Human Services 
P.O. Box 1437 
Little Rock, AR 72201 
(501) 682-8360 
Program Implemented: 1978 


Fiscal or Calendar Year 1984 and/or 1988 Data 

Interviewees: Judy Kerr, Administrator, Program Planning and Development 

Richard Petty, Management Project Analyst; Joyce Jones, Supervisor of Program Operations 

Total Expenditures: $24,552,136 $10,201,000 
Medicaid Expenditures: $18,310,983 (75%) $6,840,000 (67%) 
Other Expenditures: State $6,241,153 (25%) $2,758,000 (27%), 
Title V OAO $440,000(4%), Title XX $162,750 (2%) 
Total Number of Clients Served: 16,539 5,205 
Total Hours of Service Provided: 2,822,661 494,398 personal care visits of 2-5 hours. 
Cost Per Hour of Service: $8.70 
Provider Mode: private agencies only 
Entitlement Program: yes 

Independent Living Rating: low 

Program Goals: to enable people to stay in their own home and community, to prevent 

institutionalization, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: na 

Maximum Client Income: $5,083 

$3816 for Title XIX funding, $9,267 for Title XX and Title V (limited) 

Type of Disabilities Eligible: all disabilities 

Age Groups Eligible: all ages over 60 

Other Requirements: at risk of institutionalization, physician's orders, self sufficiency, 

prevention of abuse or neglect, previous unnecessary institutionalization. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Dept. of Human Services. 
Types and Quantity of Services Assessed By: case-management team. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, services needed. 
Administrative Activities: eligibility determination, needs assessment, provider supervision 


Consumer Profile 

Age Ratio: na 
Sex Ratio: na 
Ethnicity Ratio: na 
Disabilities Served: all 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 3 

Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Private Agencies 

Hourly Wage: na $3.40 
Reimbursement to Agencies: na $6.00 
Benefits: na social security, worker's compensation, unemployment compensation. 
Attendant Requirements: graduate of agency training program. 
Who Hires/Fires Attendant: agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, 
ambulation, moving in and out of bed, oral hygiene and grooming, skin care, range of 
motion, foot care, menstrual care, care and assistance with prosthesis. 
Household Services: light cleaning, heavy cleaning, laundry, grocery shopping, meal 
preparation, planning and cleanup, chore services. 
Communication Services: none 
Transportation Services: escort and driving, medical trips only 
Short-Term Services: none 
Medical Supervision Required for Some Services: yes every two months for personal 
care. 

Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per week, 24 hours a day: varies 
Service Limits: 72 hours per month 18 hours per week, $432 per month. 
Average Weekly Hours Provided Per Consumer: 3.3 12 

Administrator Comments 
Program's Strong Points: "With little care, people are able to maintain independence 
longer. Case management is excellent, ties folks with other services." 
Program's Weak Points: "Not enough services available: not enough funds, not enough 
hours, cost limits, for every client who qualifies for Medicaid, there are two potential clients 
that don't." 
Program Changes Being Contemplated: "Statewide screening of nursing home admissions to 
divert to community services. Planning to apply for Medicaid Waiver." 

Changes Since 1984 

Developed functional assessment tool. 
Created minimum disability level. 
Instituted statewide uniform assessment process. 
Improved management information system. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 4 

Medicaid PC-Option 
Department of Human Services, Bureau of Medical Services 
249 Western Avenue, State House Station 11 
Augusta, Maine 04333 
(207) 289-3957 
Program Implemented: 1986 


Interviewee: Diane Jones, Comprehensive Health Planner 
Fiscal or Calendar Year 1988 Data 

Total Expenditures: $395,629 
Medicaid Expenditures: $263,568 (67%) 
Other Expenditures: State $132,061 (33%) 
Total Number of Clients Served: 241 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: private agencies only. 
Entitlement Program: na 

Program Eligibility Requirements 

Maximum Client Income: na 
Age Groups Eligible: all 
Disability Groups Eligible: physical disability, brain injury or trauma. 
Other Eligibility Requirements: ICF or SNF level of care, Medicaid recipient or eligible, 
physician's orders. 


Attendant Profile 
Private Agency Providers 

Hourly Wage: na 
Agency Reimbursement: $5.78 
Benefits: na 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, respiration, ambulation, moving in and out of bed, oral hygiene and grooming, skin 
care, care and assistance with prosthesis, catheterization, injections, medications, range of 
motion, foot care. 
Household Services: light cleaning. 
Communication Services: getting assistance from agencies in the community, handling 
paperwork for paid helpers. 
Transportation Services: none (services offered in separate Medicaid reimbursement 
program). 
Short-Term Services: none 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per week, 24 hours a day: yes 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 5 

Service Limits: costs cannot exceed nursing home costs (ICF cap= $20,699, SNF cap= 
$26,904). 

Average Weekly Hours Provided Per Consumer: na 
Administrative Activities: eligibility determination, case management, recipient outreach 
and training, provider referral and training. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 6 

Personal Care Program 
Dept. of Health and Mental Hygiene 
300 West Preston, Room 206 
Baltimore, Maryland 21201 
(301) 225-1451 
Program Implemented: 1981 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Vicki Lessans, Chief, Personal Care Services 

Mark Leeds, Section Head, DHMH 

Total Expenditures: $7,600,000, $4,000,000 
Medicaid Expenditures: $3,800,000(50%), $1,964,000 (49%) 
Other Expenditures: State $3,800,000(50%), $2,036,000 (51%) 
Total Number of Clients Served: 4000,1468 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: independent providers and private agency workers, independent providers 
only. 

Entitlement Program: yes 

Independent Living Rating: medium 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: $2500, excluding home, personal items in the home, car, burial 
insurance, life insurance. 
Maximum Client Income: $4,300 $3600, excluding impairment-related employment 
expenses, medical expenses, health insurance payments. 
Type of Disabilities Eligible: all disabilities. 


Age Groups Eligible: all 

Other Requirements: Medicaid eligible, physician's orders. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Dept. of Health and Mental Hygiene. 
Types and Quantity of Services Assessed By: case manager (RN). 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), services 
needed. 


Administrative Activities: provider training 

Consumer Profile 
Age Ratio: 2% under 18, 33.4% 18-64, 21.3% 65-74, 43.3% 75 or over. 
Sex Ratio: na 
Ethnicity Ratio: na 
Disabilities Served: all 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 7 

Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: 30 
Number Who Could Leave Institutions If Program Were Expanded: 50 

Attendant Profile 
Independent Providers 

Wage: $10, $20 or $25 per day, $10 per day. 
Benefits: none 

Attendant Requirements: trained by RN, physically capable of doing the work. 
Family Regulations: no relatives. 

Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: no 

Private Agency Workers 

Wage: na 
Benefits: na 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, moving in and out of bed, oral hygiene and grooming, skin care, care and assistance 
with prosthesis, medication, range of motion, foot care. 
Household Services: light cleaning, laundry, shopping, meal preparation and cleanup, meal 
planning. 
Communication Services: none 
Transportation Services: medical escort only. 
Short-Term Services: none 
Medical Supervision Required for Some Services: yes every two months for all services. 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: none 
Average Weekly Hours Provided Per Consumer: na, 13 

Administrator Comments 

Program's Strong Points: " Maintains people in the community." 
Program's Weak Points: "Lump sum payment system doesn't encourage optimum service 
delivery." 
Changes Being Contemplated: "Make payment tied to hours of service delivery." 


Program Changes Since 1984 

Increased maximum income eligibility. 
Promulgated regulations to permit provider agencies as well as independent providers. 
Developed Surveillance and Utilization Review System (SURS). 
Improved management information system. 


italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 8 

Independent Living Personal Care Program 
Medicaid- Dept. of Public Welfare 
600 Washington Street, Room 740 
Boston, MA 02111 
(617) 348-5617 
Program Implemented: 1977 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Renee Cochin, Ambulatory Program Specialist, 

Betsy Cohen, Senior Program Specialist; Debby Pultman 

Total Expenditures: $12,850,281, $5,655,354 
Medicaid Expenditures: $6,425,140 (50%), $2,827,677 (50%) 
Other Expenditures: State $6,425,140 (50%), $2,827,677 (50%) 
Total Number of Clients Served: 1518, 584 
Total Hours of Service: na, 1,275,456 
Cost Per Hour of Service: na, $4.43 
Provider Mode: independent providers only 
Entitlement Program: yes 

Independent Living Rating: high 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, "To provide severely physically disabled persons with medically necessary 
personal care services which will enable them to live independently in a noninstitutional 
community setting. " 

Program Eligibility Requirements 

Maximum Client Assets: na 
Maximum Client Income: $10,668, na 
Type of Disabilities Eligible: physically disabled, DD. 
Age Groups Eligible: all over 18 
Other Requirements: Medicaid eligible, wheelchair user, able to manage own attendant, 
physician's orders, inability to use two or more limbs, "severely physically disabled". 
Number of Applicants Considered Ineligible: na 
Number of Applicants on Waiting List: na 

Administrative Profile 

Administrative Agency: Massachusetts Dept. of Public Welfare. 
Types and Quantity of Services Assessed By: Independent Living Program. 
Factors for Assessment: services needed. 


Consumer Profile 

Age Ratio: na 
Sex Ratio: na 
Ethnicity Ratio: na 
Disabilities Served: physically disabled, DD. 
Average Income: na 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 9 

Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Independent Providers 

Hourly Wage: $2.00-$7.50 $5.30 
Benefits: none 

Attendant Requirements: trained by client/consumer 
Family Regulations: no relatives 

Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: yes 
Consumer Can Train Attendant: yes 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, 
respiration, care and assistance with prosthesis, catheterization, injections, medication, range 
of motion, foot care. 
Household Services: light cleaning, heavy cleaning, laundry, grocery shopping, other 
shopping, meal preparation and cleanup, chore services, taking care of children, paying bills, 
budgeting, planning meals. 
Communication Services: making telephone calls, writing letters, handling money or 
checks, getting assistance from agencies in the community, handling paperwork for paid 
helpers, interpreting, reading. 
Transportation Services: escort and driving for medical and nonmedical trips. 
Short-Term Services: emergency services. 
Medical Supervision Required for Some Services: yes for medical services. 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: none 
Average Weekly Hours Provided Per Consumer: na, 42 

Administrator Comments 
Program's Strong Points: "Offers disabled people the opportunity to live in the community." 
Program's Weak Points: "Lack of regulations & standards by which providers (ILPs) could 
deliver services." 
Program Changes Being Contemplated: "developing regulations limiting maximum to 56 
hours per week, developing regulations requiring prior authorization for medical skills 
training over 20 sessions, developing regulations so ILPs could be paid to train people in the 
transitional living program." 

Changes Since 1984 

Liberalized eligibility. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 10 

Medical Assistant Program 
Massachusetts Commission for the Blind 
110 Tremont Street 
Boston, Massachusetts 02108 
(617) 727-5550 
Program Implemented: 1968 


This program became part of the Independent Living 
Personal Care Program soon after the 1985 Survey 

Fiscal or Calendar Year 1984 Data 
Interviewee: Bob Takacs, Director of Medicaid, Mass. Comm. for the Blind 

Total Expenditures: not available 

Medicaid Expenditures: 80% of total budget 

Other Expenditures: State 2%, Title )0C 10%, Title VIIB 8% 
Total Number of Clients Served: approx. 500 


Total Hours of Service Provided (83-84): not available 


Cost Per Hour of Service: not available 


Provider Mode: private agencies only. 


Independent Living Rating: medium. 


Program Goals: to enable people to stay in their own home and community, to prevent 


institutionalization, to contain costs associated with long-term care, to allow people to work 


and still receive financial aid for attendant services. 


Program Eligibility Requirements 


Maximum Client Assets: $2000 Medicaid eligibility. 


Maximum Client Income: not available. 
Type of Disabilities Eligible: all disabilities. 


Age Groups Eligible: all. 
Other Requirements: at risk of institutionalization, able to manage own attendant, living 


alone, severely disabled, blind, physician's orders. 


Number of Applicants Considered Ineligible: na 


Number of Applicants on Waiting List: none. 


Administrative Profile 


Administrative Agency: Massachusetts Commission for the Blind. 


Medical Supervision Required: quarterly for Medicaid recipients. 
Types and Quantity of Services Assessed By: Independent Living Program. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), plan of 
care less costly than institutionalization, ICF eligible, services needed. 


Consumer Profile 


Age Ratio: 5% under 18, 10% 18-64, 20% 65-74, 65% 75 or over. 
Sex Ratio: 30% male, 70% female. 
Ethnicity Ratio: 15% black, 5% hispanic, 5% asian, 75% white. 


italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 11 

Disabilities Served: all. 
Average Income: na 
Income Source: 70% SSDI. 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave institutions If Program Were Expanded: na 


Attendant Profile 
Private Agencies 
Hourly Wage : $4.25-6.00 
Reimbursement to Agencies: $5.40-11.00 
Benefits: vacation, sick leave, health insurance, worker's compensation, social security, 
unemployment compensation. 
Attendant Requirements: trained by client/consumer, home health aide, graduate of agency 
training program. 
Who Hires/Fires Attendant: consumer or agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: respiration, bowel and bladder care, feeding, bathing/showering, 
dressing, menstrual care, ambulation, moving in and out of bed, oral hygiene and grooming, 
skin care, care and assistance with prosthesis, catheterization, injections, medication, range 
of motion. 
Household Services: light cleaning, meal preparation. 
Communication Services: transportation, protective supervision, teaching and demonstration, 
telephone reassurance, readers, interpreters for the deaf, home delivered meals, case 
management. 
Short-Term Services: available. 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: 35 hours per week. 
Average Weekly Hours Provided Per Consumer: 25 


Administrator Comments 
Program's Strong Points: "Individualized program, monitored closely in terms of payment, 
able to meet needs well." 
Program's Weak Points: "Not able to compile data. Doesn't serve people non-medicaid 
eligibles" 
Changes Being Contemplated: "Broadening definition of personal care attendant services 
under Medicaid, eg. domestic and communication services. Will apply for waiver." 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 12 

Home Help Program 
Michigan Dept. of Social Services 
Suite 710, Commerce Building 
300 South Capitol 
Lansing, Michigan 48909 
(517) 373-8534 
Program Implemented: 1971 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewees: Paula Clarke, Coordinator of Handicapped Services, and Ralph Young, 
Program Manager 

Total Expenditures: $81,000,000 $63,000,000 
Medicaid Expenditures: $33,000,000 (41%) $27,720,000 (44%) 
Other Expenditures: State $31,000,000 (38%) $30,000,000 (39%) 
Title XX $14,000,000 (17%) $13,000,000 (17%) 
Total Number of Clients Served: 33,000 22,000 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: independent providers only 
Entitlement Program: "Officially it is not an entitlement program, but we tend to operate 
like one. We have never closed intake." 

Independent Living Rating: high 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care, enhance independence. 

Program Eligibility Requirements 

Maximum Client Assets: $1500, excluding home, personal items in the home, car, burial 
insurance. 
Maximum Client Income: $9,048 $8,280, excluding taxes, FICA, employment expenses. 
Type of Disabilities Eligible: all 


Age Groups Eligible: all 

Other Requirements: physician's orders, at risk of institutionalization. 
Number of Applicants Considered ineligible: na 

Administrative Profile 

Administrative Agency: Michigan Dept. of Social Services. 
Types and Quantity of Services Assessed By: agency social worker. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, services 
needed. 


Administrative Activities: eligibility determination, needs assessment, provider recruitment, 
referral, training and supervision, recipient outreach, case management. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 13 

Consumer Profile 
Age Ratio: 27% under 18, 28% 18-64, 22% 65-74, 23% 75 or over. 
Sex Ratio: 28% male, 72% female 
Ethnicity Ratio: na 
Disabilities Served: all 
Average Income: $3948 
Income Source: 68% SSI, 32 % other 

Attendant Profile 
Independent Providers 

Hourly Wage: $3.35. 
Benefits: social security, "negotiated with client." 
Attendant Requirements: consumer requests an individual provider, consumer capable of 
supervising attendant, attendant must be 18 or older. 
Family Regulations: no legally responsible relatives; unless they are prevented from working 
outside the home because no one else is available and capable. 


Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: yes 
Consumer Can Train Attendant: yes 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, care and 
assistance with prosthesis, "catheterization if directed by client", range of motion. "Other 
services are covered in some situations or by Home Health Services complimenting our 
services." 
Household Services: light cleaning, heavy cleaning, laundry, shopping, meal preparation 
and cleanup, chore services, minor repairs, "taking care of children is part of chore service", 
"scheduling household tasks and deciding who will do them is the role of the client", 
"Paying bills, budgeting, planning meals, making grocery and other shopping lists, are done 
only if under the direction of the client", maintenance, renovation, yard work, snow removal, 
guide dog maintenance. 


Communication Services: "interpreting for people who are deaf is a separate service 
outside of adult home help and paid from administrative funds". 
Transportation Services: non-medical escort and driving. 
Short-Term Services: "not a separate service yet". 
Medical Supervision Required for Some Services: "Paper review by RN of service plan, 
and RN certification of need for service." 


Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: "If providers are willing to do it 
(usually very rare)". 
Service Limits: $333 per month $305 
Average Weekly Hours Provided Per Consumer: 17, na 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 14 

Administrator Comments 
Program's Strong Points: "Client-directed. Cost effective. Only statewide available resource 
for independent living. Delays institutionalization. Available to anyone- DD, MR, etc. 
Serves children of disabled parents." 
Program's Weak Points: "Only provides personal care, not equipment which could alleviate 
dependency on human energy. Maximum allowance is too small. No strong framework for 
entire program. Caseworkers being cut; need more supportive services. Self employed must 
submit FICA." 
Changes Being Contemplated: "Increase capability to serve more clients." 

Changes Since 1984 

Increased maximum income eligibility figure. 
Added an exception procedure at the local level that allows payments over the maximum if 
need is documented. 
Make greater use of centers for independent living to train clients how to hire and supervise 
aides (the state pays CILs for this service). 
Independent case management. 
Piloting some pre-admission screening projects with office of Service to the Aging. 
"We have developed some new management reports we hope to have ready in a few years." 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 15 

Medical Assistance and Personal Care Assistance Program 
Dept. of Human Services, Long-Term Care Management Division 
Space Center, 444 Lafayette Road 
St. Paul, Minnesota 55155-3844 
(612) 296-1551 
Program Implemented: 1977 


Fiscal or Calendar Year 1984 and/or 1987 Data 
Interviewee: Lynda Adams, Personal Care Policy Coordinator, 

Rosemary Wilder, Administrative Assistant; Ron Hook, Administrator 

Total Expenditures: $8,904,074 $5,292,000 
Medicaid Expenditures: $4,755,666 (53%) $2,688,336 (51%) 
Other Expenditures: State $3,672,930 (41%) $2,344,356 (44%) 
County $47,548 (5%) $259,308 (5%) 
Total Number of Clients Served: 1,787 11,951 
Total Hours of Service Provided: 3,188,008 na 
Cost Per Hour of Service: $2.79 na 
Provider Mode: independent providers only 
Entitlement Program: yes 

Independent Living Rating: medium 
Program Goals: to enable people to stay in their own home and community, to contain 
costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: $ 3000, excluding home, personal items in the home, car. 
Maximum Client Income: $ 4,824 $4,128 excluding taxes, FICA, employment expenses, 
day care costs, medical expenses, health insurance payments 
Type of Disabilities Eligible: all 
Age Groups Eligible: over 18 all 
Other Requirements: Medicaid or AFDC eligible, able to manage own attendant, physician's 
orders 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Dept. of Human Services. 
7))pes and Quantity of Services Assessed By: program director 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), plan of 
care less costly than institutionalization, services needed. 


Administrative Activities: eligibility determination. 

Consumer Profile 
Age Ratio: 43% under 18, 27.5% 18-64, 14.75% 65-74, 14.75% 75 or over. 
Sex Ratio: 31 % male, 69% female. 
Ethnicity Ratio: 6% black, 1% hispanic, 3% native american, 12% asian, 62% white. 
Disabilities Served: physical disability, brain injury. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 16 

Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Independent Providers 

Hourly Wage: $6.34 $5.67 
Benefits: worker's compensation, unemployment compensation. 
Attendant Requirements: consumer requests an individual provider, attendant must be 18 or 
older, trained by consumer, graduate of agency training program. 
Family Regulations: no relatives. 


Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: yes 

Program Services Available 
Personal Services: respiration, bowel and bladder care, feeding, bathing/showering, 
dressing, menstrual care, ambulation, moving in and out of bed, oral hygiene and grooming, 
skin care, care and assistance with prosthesis, catheterization, medication, range of motion, 
foot care, home dialysis. 
Household Services: light cleaning, meal preparation and clean-up, chore services. 
Communication Services: none 
Transportation Services: escort and driving, medical trips only. 
Short-Term Services: none 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: 46 hours per week, $1,268 per month 50 hours per week, $1134 per 
month. 
Average Weekly Hours Provided Per Consumer: 34, na 

Administrator Comments: none 

Changes Since 1984 

Increased maximum income eligibility figure. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 17 

In-Home Service Program 
Dept. of Social Services, Division of Aging 
2701 W. Main 
Jefferson City, Missouri 65102 
(314) 751-3082 


Program Implemented: 1982 


The 1989 survey data includes two other programs, a Title XX and a 
Title III program, which were reported separately in 1985 

Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Elaine Reiter, Alternative Services Administrator 

Fordyce Mitchell, Assistant Medicaid Administrator 

Total Expenditures: $26,114,000 $9,190,631 
Medicaid Expenditures: $6,660,000 (26%) $5,514,397 (60%) 
Other Expenditures: State $12,320,000 (47%) $3,676,252 (40%) 
Title XIX Waiver $2,599,000 (10%) 
Title XX $3,535,000 (14%) 
Title III $1,000,000 (4%) 
Total Number of Clients Served: 22,000 8,240 
Total Hours of Service Provided: 3,550,000 total-- 1,900,000 (personal services) 
1,650,000 (household services) 756,780 
Cost Per Hour of Service: $7.36 $12.14 
Provider Mode: private agencies only 
Entitlement Program: no (5000 people on waiting list) 


Independent Living Rating: low 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care 

Program Eligibility Requirements 

Maximum Client Assets: na. 

Maximum Client Income: na 

Type of Disabilities Eligible: all disabilities 

Age Groups Eligible: all 

Other Requirements: Medicaid eligible, physician's orders, at risk of institutionalization. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Dept. of Social Services. 
Types and Quantity of Services Assessed By: nurse consultants. 
Factors for Assessment: functional abilities (ADLs), services needed, plan of treatment less 
costly than institutionalization. 


Administrative Activities: eligibility determination, needs assessment, recipient outreach, 
case management 

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Appendix A, Page 18 

Consumer Profile 
Age Ratio: na 
Sex Ratio: 20% male, 80% female. 
Ethnicity Ratio: 23 % black, 77% white. 
Disabilities Served: all 
Average income: na 
Income Source: 62 % SSI 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Private Agencies 

Hourly Wage: $3.35-$5.50 

Reimbursement to Agencies: $6.90 

Benefits: na 

Attendant Requirements: home health aide, graduate of training program. 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, moving in and out of bed, oral hygiene and grooming, skin care, insulin injections, 
medication, foot care (non-diabetic). 
Household Services: light and heavy cleaning, laundry, grocery and other shopping, chore 
services, meal planning, preparation and clean-up. 
Communication Services: writing letters. 
Transportation Services: none 
Short-Term Services: emergency and relief services. 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: no 
Service Limits: 28 hours per week or $985 per month 19 hours per week 
Average Weekly Hours Provided Per Consumer: 5-8 3.7 

Administrator Comments 
Program's Strong Points: "We're serving a lot of people after only three years of operation; 
so it is a popular and presumably needed service. We have cleaned up policy manuals, 
billing procedures, assessment process, and automated authorization & payment system, so 
we can handle rudimentary functions to most people. We also have good case management 
& problem resolution capacity" 
Program's Weak Points: "Targeting 'the truly needy' population & avoiding becoming an 
alternate funding source for SSBG funding shortfalls. Much more physician awareness is 
needed. We need to broaden our scope of services and remove the gaps into which folks are 
always falling." 
Changes Being Contemplated: "Enhanced automated tracking system. Improved assessment 
tool. Increase nurse and physician input. Coordinate home health and other alternative 
programs. Increase scope of target populations to include MR/DD & possibly MI." 

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Appendix A, Page 19 

Changes Since 1984 

Created minimum disability level. 
Added assessment tool to uniform assessment process. 
Formalized client grievance mechanisms. 
Improved management information system. 


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Appendix A, Page 20 

Medicaid Personal Care Services Program 
Department of Social and Rehabilitation Services 
P.O. Box 4210 
Helena, Montana 59604 
(406) 444-4540 
Program Implemented: 1977 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Nancy Ellery, Administrative Officer 

Joyce DeCunzo, Program Officer II 

Total Expenditures: $2,361,982 $400,000 
Medicaid Expenditures: $1,017,714 (43%) $260,000 (65%) 
Other Expenditures: State $775,202 (33%) $140,000 (35%) 
Medicaid Waiver $569,066 (24%) 
Total Number of Clients Served: 736, na 
Total Hours of Service Provided: 450,283 103,893 
Cost Per Hour of Service: $5.25 $3.85 
Provider Mode: statewide agency, private agencies and independent providers. 
Entitlement Program: yes 

Independent Living Rating: medium 
Program Goals: to prevent institutionalization, to enable people to stay in their own home 
and community, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: na. 
Maximum Client Income: SSI Income Limit unless medically needy, $4416 $3900 
Type of Disabilities Eligible: all 

Age Groups Eligible: all 

Other Requirements: Medicaid, SSI or SSDI eligible, physician's orders. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Department of Social and Rehabilitation Services. 
Types and Quantity of Services Assessed By: RN and attending physician. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, services 
needed. 


Administrative Activities: (23% of budget) eligibility determination, needs assessment, 
provider recruitment, supervision, training and referral, recipient outreach, training and 
supervision, case management. 

Consumer Profile 
Age Ratio: na 
Sex Ratio: na. 
Ethnicity Ratio: 98% white, 2% native American. 


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Appendix A, Page 21 

Disabilities Served: all. 
Average Income: $ 3,900 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 

Independent Providers 
Hourly Wage: $3.85 
Benefits: worker's compensation, unemployment compensation. 
Attendant Requirements: attendant must be 18 or older, graduate of state agency program. 
Family Regulations: no relatives allowed who are closer than nephew, niece or cousin. 


Private Agency 

Hourly Wage: $4.65 
Reimbursement to Agencies: na 
Benefits: optional health insurance, worker's compensation, social security, unemployment 
compensation, transportation costs, vacation pay, sick leave, health insurance. 

Program Services Available 
Personal Services: feeding, bathing/showering, dressing, menstrual care, ambulation, 
moving in and out of bed, oral hygiene and grooming, skin care, self-administered 
medication, range of motion, care and assistance with prosthesis, menstrual care. 
Household Services: light cleaning, laundry, grocery shopping, meal preparation and 
cleanup, meal planning, making grocery or other shopping lists, paying bills, budgeting. 
Communication Services: none 
Transportation Services: medically related transportation and escort (Non-medical escort 
and driving for Waiver recipients only). 
Short-Term Services: none 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: 40 hours per week (prior authorization from state is required for 
exceptions to this limit) 67 hours per week, $13,416 per year (80% of nursing home cost). 
Average Weekly Hours Provided Per Consumer: 12, na 

Administrator Comments 
Program's Strong Points: "Many people would be in a nursing home without these services-
it provides choice for client." 
Program's Weak Points: "Payment base is too low to be competitive, people aren't 
committed. Quality of care is low. To improve quality, we must increase wages, but that 
will decrease quantity." 
Changes Being Contemplated: "Change from self-employed to contract." 

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Appendix A, Page 22 

Changes Since 1984 

Developed functional ability assessment tool. 

Increased maximum income eligibility figure. 

Instituted statewide uniform assessment process. 

Changed from individual providers to agency providers. 

Established consumer board. 

Formalized grievance mechanisms. 

Annual program and financial audits of contract agency. 

On site review of provider performance based on service standards. 

One statewide agency, regional coordinators. 

Competitive agency provider selection based on quality (not lowest bid). 

Improved management information system. 

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Appendix A, Page 23 

Title XIX Personal Care Aide 
Dept. of Social Services 
Box 95026 
Lincoln, Nebraska 68509 


(402) 471-9360 
Program Implemented: 1965 
Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Nancy Olson, Unit Manager 

Total Expenditures: $1,427,497 $750,000 
Medicaid Expenditures: $885,048 (62%) $427,400 (57%) 
Other Expenditures: State $542,449 (38%) $322,600 (43%) 
Total Number of Clients Served: 515 155 
Total Hours of Service Provided: na 234,549 
Cost Per Hour of Service: $3.35-3.70 $3.20 

Provider Mode: independent providers, private agencies and independent providers. 
Entitlement Program: yes 


Independent Living Rating: medium. 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care. 


Program Eligibility Requirements 

Maximum Client Assets: na 

Maximum Client Income: $5100 

Type of Disabilities Eligible: all 

Age Groups Eligible: all 

Other Requirements: Medicaid eligible, physician's orders. 

Administrative Profile 

Administrative Agency: Dept. of Social Services. 
Types and Quantity of Services Assessed By: local office workers. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), services 
needed. 


Administrative Activities: eligibility determination, needs assessment, provider recruitment, 
referral, training and supervision, case management. 

Consumer Profile 
Age Ratio: na 
Sex Ratio: na 
Ethnicity Ratio: na 
Disabilities Served: all 
Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 24 

Attendant Profile 
Independent Providers 

Hourly Wage: $3.35-3.70 $3.35 
Benefits: social security, none. 
Attendant Requirements: attendant must be 18 or older, certified by local officer, services 
must be provided in the home, trained by client/consumer. 
Family Regulations: no relatives allowed. 


Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: yes 

Private Agencies 
Hourly Wage: na 
Reimbursement to Agencies: $6.50. 
Benefits: na 
Attendant Requirements: home health aide. 
Who Hires/Fires Attendant: consumer or agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: bowel and bladder care (limited), feeding, bathing/showering, dressing, 
menstrual care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, 
range of motion, non-diabetic foot care, care and assistance with prosthesis. 
Household Services: very limited, may include light cleaning, laundry, grocery shopping, 
running errands and other shopping, meal preparation and clean-up, meal planning, making 
grocery and other shopping lists. 
Communication Services: very limited, may include; making telephone calls, interpreting, 
reading. 
Transportation Services: escort and driving, medical trips only. 
Short-Term Services: emergency and respite, none. 
Medical Supervision Required for Some Services: yes none required 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: 40 hours per week. 
Average Weekly Hours Provided Per Consumer: na, 31 hours. 


Administrator Comments 
Program's Strong Points: "Enabling people to remain at home and avoid institutional care." 
Program's Weak Points: "Lack of quality ca re." 
Changes Being Contemplated: "Contracting services to improve care. New legislation 


requires agencies to be licensed." 


Changes Since 1984 

none listed 

 

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Appendix A, Page 25 

Nevada Medicaid 
Dept. of Welfare 
2527 N. Carson Street 
Carson City, Nevada 89710 
(702) 885-4694 
Program Implemented: 1967 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Karen Allen, Medical Service Specialist 

Diane Hooley, Medical Service Specialist 

Total Expenditures: $1,020,000 $509,713 
Medicaid Expenditures: $510,000 (50%) $254,857 (50%) 
Other Expenditures: State $510,000 (50%) $254,857 (50%) 
Total Number of Clients Served: 300 243 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: independent providers 
Entitlement Program: yes 

Independent Living Rating: low 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: $1600, excluding home, personal items in the home, car (up to 
$4,500), burial insurance ($1,500), life insurance ($1,500). 

Maximum Client Income: na 

Type of Disabilities Eligible: all 

Age Groups Eligible: all 

Other Requirements: Medicaid eligible, physician's orders, ADLs. 
Number of Applicants Considered Ineligible: na. 

Administrative Profile 

Administrative Agency: Dept. of Human Resources. 
Types and Quantity of Services Assessed By: RNs (in urban areas), social workers (in rural 
areas). 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, services 
needed. 


Administrative Services: eligibility determination, needs assessment, case management, 
provider recruitment, referral and training. 

Consumer Profile 

Age Ratio: 5% under 18; 15% 18-64; 20% 65-74; 60% 75 and older. 
Sex Ratio: 30% male, 70% female. 
Ethnicity Ratio: 10% black, 7% hispanic, 1% native-american, 1% asian, 81 % white. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 26 

Disabilities Served: all 
Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program in FY 1985: 146. 
Number Who Could Leave Institutions If Program Were Expanded: 30% of nursing home 
population. 

Attendant Profile 
Independent Providers 

Hourly Wage: $5.50-7.50 $5.10 - 6.60 
Benefits: none 

Attendant Requirements: attendant must be 18 or older, "experience and/or training of some 
sort required". 
Family Regulations: no relatives allowed. 


Consumer Can Hire/Fire Attendant: no 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: no 

Program Services Available 
Personal Services: bowel and bladder care (limited), feeding, bathing, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, care and 
assistance with prosthesis (limited), range of motion (limited), foot care (limited), 

catheterization, injections, medication. 

Domestic Services: meal preparation and clean-up, meal planning, making grocery and 
other shopping lists, light cleaning, laundry. 
Communication Services: handling paperwork for paid helpers, handling money or checks 
(limited). 
Transportation Services: Escort, medical trips only. 
Short-Term Services: none. 
Available 24 hours per day, 7 days per week: no 
Service Limits: ICF or SNF costs $1700 per month 
Average Weekly Hours Provided Per Consumer: na 10 
Medical Supervision Required for Some Services: yes quarterly for all services. 
Recipients Participate in Decisions r.e. Service Allocation: yes 

Administrator Comments 
Program's Strong Points: "Enabling people to remain at home, cost effective, higher quality 
of life." 
Program's Weak Points: "Not extensive enough to meet needs (i.e. clients requiring night 
time care), lack of coordination with other community support services." 
Changes Being Contemplated: "Expanding hours, centralizing case management." 


Changes Since 1984 

none listed 

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Appendix A, Page 27 

Personal Care Attendant Service 
Division of Human Services 
Office of Medical Services, Hagen Drive 
Concord, New Hampshire 03301-6521 
(603) 271-4365 
Program Implemented: 1979 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Diane Kemp, Program Specialist 

Total Expenditures: $890,613 $303,662 
Medicaid Expenditures: $445,306 $179,161 (59%) 
Other Expenditures: State $445,306 $124,501 (41 %) 
Total Number of Clients Served: 55 33 
Total Hours of Service Provided (83-84): na 40,770 
Cost Per Hour of Service: na $7.59 
Provider Mode: independent providers 
Entitlement Program: yes 

Independent Living Rating: low 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization. 

Program Eligibility Requirements 

Maximum Client Assets: $2500, excluding home, personal items in the home, car, burial 
insurance, life insurance. "Please be advised that this is a small portion of determining 
resource eligibility." 
Maximum Client Income: na $4068 
Type of Disabilities Eligible: physical disability, brain injury. 
Age Groups Eligible: over 18 all 
Other Requirements: Medicaid eligible, physician's orders, wheelchair user. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Division of Human Services. 
Types and Quantity of Services Assessed By: private agency. 
Factors for Assessment: physician's recommendation. 


Administrative Activities: eligibility determination, needs assessment, recipient outreach and 
training, provider supervision, case management 

Consumer Profile 
Age Ratio: na 
Sex Ratio: na 

Ethnicity Ratio: na 
Disabilities Served: physically disabled, brain injury. 
Average Income: na 
Income Source: na 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 28 

Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Independent Providers 

Hourly Wage: $6.25-7.25 (a flat rate of $10.50 is paid to the Granite State Living 
Foundation who in turn pays the individual providers) $8.25 
Benefits: worker's compensation, social security, unemployment compensation 

Attendant Requirements: na 
Family Regulations: no relatives. 

Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: yes 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing, dressing, ambulation, moving 
in and out of bed, grooming and oral hygiene, menstrual care, care and assistance with 
prosthesis, range of motion, foot care, skin care, medication, catheterization. 
Household Services: light cleaning, laundry, shopping, meal preparation and cleanup. 
Communication Services: none 
Transportation Services: none 
Short-Term Services: none 
Medical Supervision Required for Some Services: no required for all services. 
Recipients Participate in Decisions re. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: "no cap as yet." 
Average Weekly Hours Provided Per Consumer: na 

Administrator Comments 
Program's Strong Points: "Reduces dependency and allows people to live in the community." 


Program Changes Since 1984 

Increased maximum income eligibility figure. 
Increased rate of reimbursement for PCAs. 

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Appendix A, Page 29 

Personal Care Assistant Program 
New Jersey Division of Medical Assistance and Health Services 


CN 712 

Trenton, New Jersey 08625 
(609) 588-2620 
Program Implemented: 1984 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Katie Hammer, Assistant Administrator 

Carol Kurland, Administrator, Office of Homecare Programs 

Total Expenditures: $7,460,378 $1,502,192 
Medicaid Expenditures: $3,730,189 (50%) $751,095 (50%) 
Other Expenditures: State $3,730,189 (50%) $751,095 (50%) 
Total Number of Clients Served: na 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: private agencies only 
Entitlement Program: yes 

Independent Living Rating: low 
Program Goals: to prevent institutionalization, to enable people to stay in their own home 
and community, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: $1600 
Maximum Client Income: $13,248 na 
Type of Disabilities Eligible: na 

Age Groups Eligible: all 

Other Requirements: Medicaid or SSI eligible, physician's orders, family unable or unwilling 
to do attendant care. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Division of Medical Assistance and Health Services. 
Types and Quantity of Services Assessed By: state medicaid/mental health staff. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, services 
needed. 


Administrative Activities: eligibility determination, provider recruitment, referral and 
training, quality assurance monitoring 

Consumer Profile 
Age Ratio: na 
Sex Ratio: na 
Ethnicity Ratio: na 
Disabilities Served: na 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 30 

Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Private Agencies 

Hourly Wage: $11.00-14.00 $8.30 
Reimbursement to Agencies: na 
Benefits: varies depending on agency. 

Attendant Requirements: home health aide, graduate of training program. 
Who Hires/Fires Attendant: agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, 
ambulation, moving in and out of bed, oral hygiene and grooming, skin care, menstrual care, 
respiration, medications, range of motion, foot care, care and assistance with prosthesis. 
Household Services: light cleaning, laundry, grocery shopping, meal preparation, planning 
and cleanup, paying bills, budgeting. 
Communication Services: making telephone calls, writing letters, interpreting, reading. 
Transportation Services: escort, medical trips only, and driving. 
Short-Term Services: respite services. 
Medical Supervision Required for Some Services: yes every two months for all services. 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: varies depends on provider. 
Service Limits: 25 hours per week. 
Average Weekly Hours Provided Per Consumer: na 


Administrator Comments 
Changes Being Contemplated: "Changes have been made in the last year to increase 
coverage, raise maximum weekly hours from 20 to 25, raise per hour rate by 3.9%, allow 

for a nursing reassessment visit, require accreditation for all participating home care 
agencies." 

Changes Since 1984 

Increased income eligibility figure 
Increased hours from 20 to 25 
External quality assurance accreditation system 

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Appendix A, Page 31 

Personal Care Services 
Dept. of Social Services 
40 North Pearl 
Albany, New York 12243 
(518) 474-9451 
Program Implemented: 1973 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Ann Hallock, Director of Home Care 

Total Expenditures: $1,179,830,000 $458,199,577 
Medicaid Expenditures: $589,915,000 (50%) $229,099,789 (50%) 
Other Expenditures: State $471,932,000 (40%) $160,369,852 (35%) 
District or Borough $117,983,000 (10%) $68,729,937 (15%) 
Total Number of Clients Served: 79,198 52,400 
Total Hours of Service Provided: 130,000,000 71,394,566 
Cost Per Hour of Service: $9.08 $6.42 
Provider Mode: private agencies (over 98% of providers), less than 1% government 
workers and independent providers. 
Entitlement Program: yes 

Independent Living Rating: medium. 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care, to maximize 
independence. 


Program Eligibility Requirements 

Maximum Client Assets: $2850, excluding home, personal items in the home, car, burial 
insurance, life insurance. 
Maximum Client Income: $5700 $4700, excluding taxes, FICA, employment expenses, day 
care costs, medical expenses, health insurance payments, any other impairment-related 
expenses. 
Type of Disabilities Eligible: all 

Age Groups Eligible: all 

Other Requirements: Medicaid eligible, physician's orders. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Dept. of Social Services. 
Types and Quantity of Services Assessed By: local social service district or local medical 
director. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, services needed, assessment protocol. 


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Appendix A, Page 32 

Consumer Profile 
Age Ratio: In NYC- I% under 18, 20% 18-64, 22% 65-74, 57% 75 or over. In Upstate 
NY- 2% under 18, 21% 18-64, 17% 65-74, 60% 75 or over. 
Sex Ratio: In NYC- 19% male, 81 % female. In Upstate NY- 16% male, 84% female. 
Ethnicity Ratio: na 
Disabilities Served: all 
Average Income: na 
Income Source: na 
Number Who Left institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 

Independent Providers 
Hourly Wage: $3.35. 
Benefits: worker's compensation, social security, unemployment compensation. 
Attendant Requirements: consumer requests an individual provider, consumer capable to 
supervise attendant, consumer trains attendant, attendant must be 18 or older, attendant must 
pass skills & competency test, attendant must receive some kind of training. 
Family Regulations: no spouse, parent, child or in-law, but other relatives OK if not 
residing in the same home (unless in-home care is required). 
Consumer Can Pay Attendant: In NYC 10% direct pay cases (district issues two-party 
checks). 


Private Agencies 

Hourly Wage: $4.77-5.25 $3.35-4.35 
Reimbursement to Agencies: $6.50-7.50 

Benefits: varies depending on agency. 
Attendant Requirements: certificate of skill & competency, graduate of training program. 


Who Hires/Fires Attendant: consumer or agency. 
Who Pays Attendant: agency. 
Government Agency 
Hourly Wage: na 
Benefits: vacation pay, sick leave, health insurance, worker's compensation, social security, 
unemployment compensation, transportation costs, retirement/personal leave. 
Attendant Requirements: grad of training program. 
Who Hires/Fires Attendant: government agency. 
Who Pays Attendant: government agency. 


Program Services Available 
Personal Services: respiration (no suctioning), bowel and bladder care (no irrigation), 
feeding, bathing/showering, dressing, ambulation, menstrual care, moving in and out of bed, 
oral hygiene and grooming, skin care, care and assistance with prosthesis, range of motion, 


medication. 

Household Services: light cleaning, heavy cleaning, laundry, grocery and other shopping, 
meal preparation, planning and cleanup, chore services, paying bills, budgeting. 
Communication Services: making telephone calls, writing letters, interpreting, reading. 
Transportation Services: medical and non-medical escort. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 33 

Short-Term Services: emergency and respite services available. 
Medical Supervision Required for Some Services: yes quarterly or yearly assessment for 
all services. 


Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: no maximum 
Average Weekly Hours Provided Per Consumer: na In NYC- 53, In Upstate NY- 36. 

Administrator Comments 
Program's Strong Points: "Flexibility in terms of putting together a package which meets 
individual clients' needs. Cost effective. Humane; tried to insure that client is involved in 
plan of care. Family receives written notice of services. There is a fair hearing process." 
Program's Weak Points: "Local social service departments can make some independent 
decisions- impacts ability to plan. People who aren't on Medicaid can't get service. 
Problems with discharge planning- home care isn't always the first option and people are 
instititutionalized who don't need to be. Local districts sometimes are too tough on clients." 
Changes Being Contemplated: "Going to an automated payment system; vendors will bill 
system by code so data will be available. Improved assessment tools (not so medically 
oriented)." 

Changes Since 1984 

Increased maximum income eligibility figure. 
Improved management information system. 
Developed personal emergency response for Medicaid clients (voice and breath activated 
system). 


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Appendix A, Page 34 

Long Term Care Project 
Division of Medical Assistance 
40 N. Pearl Street 
Albany, New York 12243 
(518) 473-5507 
Program Implemented: 1977 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Chris Rush, Director of Long Term Care, Bureau of Program Review 

Total Expenditures: $94,000,000 $24,903,784 
Medicaid Expenditures: $42,000,000 (45 %) $11,684,819 (47%) 
Other Expenditures: State $37,600,000 (40%) $12,078,335 (48%) Medicaid Waiver 
$5,000,000 (5%) $293,516 (3%), County/Municipal Funds $9,400,000 Medicare $474,114 
(3%) 
Total Number of Clients Served: 10,197 4,283 
Total Hours of Service Provided: na 1,359,175 
Cost Per Hour of Service: na 
Provider Mode: private agencies only. 
Entitlement Program: yes. 

Independent Living Rating: low. 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long term care. 


Program Eligibility Requirements 

Maximum Client Assets: $2850, excluding home, personal items in the home, car, burial 
insurance, life insurance. 
Maximum Client Income: $5700 $4700, excluding taxes, FICA, employment expenses, day 
care costs, medical expenses, health insurance payments, any other impairment expenses. 
Type of Disabilities Eligible: all 

Age Groups Eligible: all 

Other Requirements: at risk of institutionalization. 
Number of Applicants Considered Ineligible: na. 

Administrative Profile 

Administrative Agency: Division of Medical Assistance. 
Types and Quantity of Services Assessed By: provident case manager in social service 
district. 
Factors for Assessment: functional abilities (ADLs), services needed, plan less costly than 
institutionalization. 


Administrative Activities: eligibility determination, needs assessment, case management, 
recipient outreach and training, provider recruitment, referral, training and supervision. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 35 

Consumer Profile 
Age Ratio: 21 % 65-74, 60% 75 or over. 
Sex Ratio: 21 % male, 79% female. 
Ethnicity Ratio: 82% white. 
Disabilities Served: all except MR. 
Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: 2121 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Private Agencies 

Hourly Wage: $4.50-7.00 $3.75-4.25 
Reimbursement to Agencies: $6.10-12.31 

Benefits: varies depending on agency. 

Attendant Requirements: home health aide; 60 classroom hours of HHA PCA approved 
training program. 
Who Hires/Fires Attendant: agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: respiration, bowel and bladder care, feeding, bathing/showering, 
dressing, menstrual care, ambulation, moving in and out of bed, oral hygiene and grooming, 
skin care, care and assistance with prosthesis, catheterization, medication, injections, range 
of motion, foot care. 
Household Services: light cleaning, heavy cleaning, laundry, grocery and other shopping, 
meal preparation, cleanup and planning, chore services,repairs, maintenance, renovation, 


architectural barrier removal. 

Communication Services: getting assistance from agencies in the community. 
Transportation Services: escort and driving, medical trips only. 
Short-Term Services: emergency and respite services available. 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: cannot exceed 3/4 of nursing home costs $2053 per month. 
Average Weekly Hours Provided Per Consumer: na 22 


Administrator Comments 

Program's Strong Points: "Managed care, relationship of budget relative to institutional cost, 
local social service district involved in assessment & budgeting." 
Program's Weak Points: "Budget cap is counterproductive; this program is most effective for 
those with the highest level of need, but these people are occasionally not admitted because 
the cost might exceed the cap. Admission criteria related to nursing home care but not 
differentiated from other homecare programs." 
Changes Being Contemplated: "Seeking legislation to make caps more flexible. Developing 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 36 

classification system for patients. Training program to improve local social service 
personnel's ability to work with providers. Make program available to those in adult homes 

(board & care)." 

Changes Since 1984 

increased program audits, on sight review of provider performance. 

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Appendix A, Page 37 

Medicaid PC-Option 
Division of Medical Assistance, Department of Human Resources 
1985 Umstead Drive 
Raleigh, North Carolina 27603 
(919) 733-6964 
Program Implemented: 1986 


Interviewee: Daphne Lyon 
Fiscal or Calendar Year 1988 Data 

Total Expenditures: $12,904,962 
Medicaid Expenditures: $8,794,910 (68%) 
Other Expenditures: State $3,493,322 (27%) 


County $616,730 (5%) 
Total Number of Clients Served: 3,765 
Total Hours of Service Provided: 1,294,330 
Cost Per Hour of Service: $9.97 
Provider Mode: agency providers only. 
Entitlement Program: yes 

Program Eligibility Attendant Requirements 

Maximum Client Income: $2,900 
Age Groups Eligible: all 
Disability Groups Eligible: all 
Other Eligibility Requirements: Medicaid recipient or eligible, family unable/unwilling to 
provide services, physician's orders. 

Attendant Profile 
Agency Providers 

Hourly Wage: $8.00 
Benefits: health insurance, social security, transportation costs. 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, menstrual 
care, self administered medication. 
Household Services: light cleaning, laundry, grocery shopping, meal preparation and cleanup, 
meal planning. 
Communication Services: none. 
Transportation Services: medical escort only. 
Short-Term Services: none. 
Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per week, 24 hours a day: varies by county or region. 
Service Limits: 20 hours per week or $640 per month 
Average Weekly Hours Provided Per Consumer: 6.6 


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Appendix A, Page 38 

Non-Technical Medical Care 
Dept. of Human Services 
312 N.E. 28th Street 
Oklahoma City, Oklahoma 73125 
(405) 521-4165 
Program Implemented: 1970 


Data from Fiscal or Calendar Year 1984 and or 1988 
Interviewee: Wilma Ray, RN, Administrative Officer 

Norma L. Groff, RN; Program Administrator 

Total Expenditures: $35,000,000 $34,400,000 
Medicaid Expenditures: $26,250,000 (75%) $32,000,000 (93%) 
Other Expenditures: State $8,750,000(35%) $2,400,000 (7%) 
Total Number of Clients Served: 14,028 7,643 
Total Hours of Service Provided: 210,420 409,482 
Cost Per Hour of Service: na 
Provider Mode: independent providers only 
Entitlement Program: yes 

Independent Living Rating: medium. 
Program Goals: To prevent institutionalization, to enable people to stay in their home and 
community. 


Program Eligibility Requirements 

Maximum Client Assets: $1500, excluding home, personal items and burial insurance. 
Maximum Client Income: $5,184 $4,080, excluding medical expenses, health insurance 
payments. 
7),pe of Disabilities Eligible: all 


Age Groups Eligible: all 

Other Attendant Requirements: Medicaid eligible, at risk of institutionalization, family 
unable or unwilling to do attendant care, physician's orders, need for assistance with ADLs. 
Number of Applicants Considered Ineligible: na 

Administrative Profile 

Administrative Agency: Oklahoma Dept. of Social Services. 
Types and Quantity of Services Assessed By: an RN acts as the trainer, consultant, manager 
and resource person for the client and provider. 
Factors for Assessment: physician's recommendation, functional ability (ADLs), accessibility 
of environment, plan of care less costly than institutionalization, services needed. 


Administrative Activities: needs assessment, provider training, provider supervision. 

Consumer Profile 
Age Ratio: na 
Sex Ratio: na 
Ethnicity Ratio: na. 
Disabilities Served: all 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 39 

Average Income: $3,600 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave institutions If Program Were Expanded: very few. 

Attendant Profile 
Independent Providers 

Wage: $13.99 per day for a minimum of three hours of service. 
Benefits: Social Security. 

Attendant Requirements: graduate from agency training program, consumer requests an 
individual provider. 
Family Regulations: "If a client lives in a remote area or speaks an unfamiliar language and 
no other person is available, a relative will be paid using state funds (not Title XIX funds)." 


Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: yes 
Consumer Can Train Attendant: no 

Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, care and 
assistance with prosthesis, medication ("the only medications given are those the client would 
normally administer to themselves"), range of motion, foot care. 
Household Services: light cleaning, laundry, grocery shopping, meal preparation, cleanup 
and planning. 
Communication Services: making telephone calls, writing letters, getting assistance from 
agencies in the community, handling paperwork for paid helpers, reading. 
Transportation Services: medical escort only 
Short-Term Services: respite none 
Medical Supervision Required for Some Services: yes once every two months for all 
services. 

Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: no 
Service Limits: $432.00 per month $425.53 per month 
Average Weekly Hours Provided Per Consumer: 15 hours 30 hours 

Administrator Comments 

Program's Strong Points: "Training program for providers of care. Clients are able to 
remain at home. Clients are able to maintain some independence. Program is cost 
effective." 
Program's Weak Points: "Lack of control in provider selection." 
Program Changes Being Contemplated: "Possible change from daily rate of pay to hourly. 


Changes Since 1984 

Developed functional ability assessment tool. 
Increased maximum income eligibility figure. 
District Supervisors perform periodic audits or assessments. 


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Appendix A, Page 40 

In Home Services & Project Independence 
Senior Services Division 
313 Public Services Building 
Salem, Oregon 97310 
(503) 378-3751 
Program Implemented: 1970 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Loren Simonds, Disability Services Program Coordinator 

Robert Zeigen, Asst. Administrator, Program Assistance Section, Susan Dietsche, and Jane 
Dixon 

Total Expenditures: $20,112,325 $12,500,000 
Medicaid Expenditures: $675,429 (3%) $912,468 (7%) 
Other Expenditures: State $9,238,468 (46%) $7,684,588 (62%) 
Title XIX Waiver $7,186,146 (36%) $2,478,610 (20%) 
Title XX none $713,659 (6%) 
Title III $1,487,705 (8%) none 
County $1,239,122 (6%) 610,648 (5%) 
Client Share $305,511 (2%) $100,000 (I%) 
Total Number of Clients Served: 2,594 9,170 (8,352 Household Services, 818 personal 
care services) 


Total Hours of Service Provided: 166,500 (personal) 6,300,000 (household) 
Cost Per Hour of Service: na 
Provider Mode: private agencies and independent providers. 
Entitlement Program: na 


Independent Living Rating: high. 
Program Goals: to enable people to stay in their own home and community, to contain costs 
associated with long-term care, to prevent institutionalization. 


Program Eligibility Requirements 

Maximum Client Assets: na 

Maximum Client Income: $2,928-$12,744 

Type of Disabilities Eligible: physical disability, brain injury. 
Age Groups Eligible: over 18 all 
Other Requirements: functionally impaired by state criterion, at risk of institutionalization, 
able to manage own attendant. 
Number of Applicants Considered Ineligible: na 


Administrative Profile 

Administrative Agency: Senior Service Division. 
Types and Quantity of Services Assessed By: agency assessment team. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, ICF eligible, 
services needed. 


Administrative Activities: Provider recruitment (RFP process) 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 41 

Consumer Profile 
Age Ratio: 26% 18-64, 29% 65-74, 45% 75 or over. 
Sex Ratio: 26% male, 74% female. 
Ethnicity Ratio: na 
Disabilities Served: physical disability, brain injury. 
Average Income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: 1800 
Number Who Could Leave Institutions If Program Were Expanded: 500 

Attendant Profile 
Independent Providers 

Hourly Wage: $1.70-$13.46 $3.45-$3.65 
Benefits: social security, unemployment compensation, transportation costs. 


Attendant Requirements: consumer requests an individual provider, consumer capable of 
supervising attendant, trained by consumer, attendant must be 18 or older. 
Family Regulations: relatives can be paid for attendant care services if not residing in the 
same home, not legally responsible, or if relative is prevented from working outside the home 
because no attendant is capable or available. 

Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: no 

Private Agencies 

Hourly Wage: $3.65-10.00 na 
Reimbursement to Agencies: $7.43 plus mileage (maximum for home care), $10.49 plus 
mileage (maximum for personal care) 

Benefits: worker's compensation, social security, unemployment compensation, 
transportation costs. 

Attendant Requirements: home health aide (personal care) or training by agency (home 
care). 
Who Hires/Fires Attendant: agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: respiration, bowel and bladder care, feeding, bathing/showering, 
dressing, menstrual care, ambulation, moving in and out of bed, oral hygiene and grooming, 
skin care, care and assistance with prosthesis, catheterization, injections, medication, range 
of motion, foot care. 
Household Services: light cleaning, heavy cleaning, laundry, grocery and other shopping, 
meal preparation, planning and cleanup, repair, maintenance and renovation, chore services. 


Communication Services: getting assistance from agencies and the community, handling 
paperwork for paid helpers. 
Transportation Services: Medical and non-medical trips. 
Short-Term Services: respite and emergency services available. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 42 

Medical Supervision Required for Some Services: yes every two months for personal 
care, home health. 

Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: yes 
Service Limits: $874.00-977.00 per month, 57 hours per week $2,359 or comparable care 
in an institution (some exceptions on a case by case basis for over $2,359- mostly severely 
disabled children). 

Average Weekly Hours Provided Per Consumer: na 

Administrator Comments 
Program's Strong Points: "Comprehensive, fairly balanced, risk intervention workers who 
look for other ways to provide service than state funds." 
Program's Weak Points: "Haven't gotten into daycare." 
Changes Being Contemplated: "Comparable payment based on in-home and foster care. 
More sophisticated assessment based on degree of impairment. Developing step-by-step scale 
to prioritize cases." 


Program Changes Since 1984 
none listed 

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Appendix A, Page 43 

Homemaker/HHA 
Dept. of Social Services, Adult Services and Aging 


700 Governors Drive 
Pierre, South Dakota 57501 
(605) 773-3656 
Program Implemented: 1978 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Jacki Casanova, Program Specialist 

Ray Rickard, Program Specialist 

Total Expenditures: $2,690,000 $1,834,000 
Medicaid Expenditures: $492,000 (25%) $309,000 (17%) 
Other Expenditures: State $614,000 (18%) $465,000 (25%) 
Title III $503,000 (19%) $375,000 (20%) 
Title XX $1,004,000 (37%) $685,000 (37%) 
Client Share of Cost $77,000 (3%) 
Total Number of Clients Served: 3282 4000 
Total Hours of Service Provided: 341,328 246,329 
Cost Per Hour of Service: approx. $7.88 $7.54 
Provider Mode: private agencies and government workers. 
Entitlement Program: no (41 people on waiting list) 


Independent Living Rating: low 
Program Goals: to enable people to stay in their own home and community, to prevent 
institutionalization, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: na 

Maximum Client Income: "income means testing is not utilized." 

Type of Disabilities Eligible: all 
Age Groups Eligible: all over 18 
Other Requirements: at risk of institutionalization, family members unable or unwilling to do 
attendant care, Medicaid eligible, physician's orders. 

Administrative Profile 

Administrative Agency: Adult Services and Aging. 
Types and Quantity of Services Assessed By: social worker with RN. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, services 
needed. 


Administrative Services: needs assessment, case management. 

Consumer Profile 

Age Ratio: na 
Sex Ratio: na. 
Ethnicity Ratio: na 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 44 

Disabilities Served: all 
Average Income: $3600 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Private Agencies 

Hourly Wage: $4.00-5.50 na 
Reimbursement to Agencies: $7.00 

Benefits: worker's compensation, social security, unemployment compensation. 
Attendant Requirements: graduate of agency training program. 

Government Employees 

Hourly Wage: $4.66-6.98 $3.85-4.67 
Benefits: vacation pay, sick leave, health insurance, worker's compensation, social security, 
unemployment compensation, transportation costs, retirement or pension plan. 


Attendant Requirements: home health aide, graduate of in-service training program. 
Who Hires/Fires Attendant: government agency. 
Who Pays Attendant: government agency. 


Program Services Available 
Personal Services: bathing/showering, dressing, oral hygiene and grooming, skin care, 
menstrual care, feeding, ambulation, moving in and out of bed, bowel and bladder care and 
assistance with prosthesis, self-administered medication, range of motion. 


Household Services: light cleaning, laundry, grocery shopping, meal preparation and 
cleanup. 
Communication Services: none 
Transportation Services: driving, medical trips only. 
Short-Term Services: none 
Medical Supervision Required for Some Services: no supervision monthly for Title 19 
services. 

Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: no 
Service Limits: 4 hours per week 
Average Weekly Hours Provided Per Consumer: 2 

Administrator Comments 
none. 

Changes Since 1984 

Program monitoring. 
On site review of provider performance based on service standards. 


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Appendix A, Page 45 

Primary Home Care Program 
Department of Human Services 
Mail Code 543-W PO Box 2960 
Austin, Texas 78769 
(512) 450-3165 
Program Implemented: 1979 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Maria Montoya, Program Specialist 

Ernest McKenney, Director of In-Home Services 

Total Expenditures: $108,982,470 $46,423,890 
Medicaid Expenditures: $62,021,924 (57%) $25,240,669 (54%) 
Other Expenditures: State $46,960,546 (43%) $21,183,221 (46%) 
Total Number of Clients Served: 31,266 14,399 
Total Hours of Service Provided: 20,133,268 8,555,066 
Cost Per Hour of Service: $5.41 $5.43 
Provider Mode: private agencies only. 
Entitlement Program: yes 

Independent Living Rating: low 
Program Goals: to prevent institutionalization, to enable people to stay in their own home 
and community, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: $1500 
Maximum Client Income: $8820 $4140 
Type of Disabilities Eligible: all 

Age Groups Eligible: all 

Other Requirements: Medicaid eligible, physician's orders, functional assessment. 
Number of Applicants Considered Ineligible: 12,000 

Administrative Profile 

Administrative Agency: Department of Human Services. 
Types and Quantity of Services Assessed By: case worker. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), 
accessibility of environment, plan of care less costly than institutionalization, services 
needed. 


Administrative Activities: eligibility determination, needs assessment, case management, 
prior approval. 

Consumer Profile 

Age Ratio: 18% under 64, 82% 65 or over. 
Sex Ratio: 23% male, 77% female. 
Ethnicity Ratio: 22 % Black, 25% Hispanic, 53 % White. 
Disabilities Served: all 
Average Income: $3960 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 46 

Income Source: 10% social security retirement, 89% SS1. 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Private Agencies 

Hourly Wage: $3.35-$4.41 (FY1987) $3.48 
Reimbursement to Agencies: $5.47 
Benefits: transportation costs (varies), worker's compensation, social security, unemployment 
compensation. 

Attendant Requirements: certified by agency contract. 
Who Hires/Fires Attendant: agency. 
Who Pays Attendant: agency. 


Program Services Available 
Personal Services: feeding, bathing/showering, dressing, menstrual care, ambulation, 
moving in and out of bed, oral hygiene and grooming, skin care, respiration, care and 
assistance with prosthesis, bowel and bladder care, medication, range of motion. 


Household Services: light and heavy cleaning, laundry, grocery and other shopping, meal 
preparation and cleanup, chore services. 
Communication Services: none 
Transportation Services: medical and non-medical escort 
Short-Term Services: emergency and relief available. 
Medical Supervision Required for Some Services: yes every two months for all services. 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: no yes 
Service Limits: 30 hours per week. 
Average Weekly Hours Provided Per Consumer: 12.3 11.7 

Administrator Comments 
Program's Strong Points: "Available statewide without any discrimination on the basis of age 
or disability. Allows people to remain in their own homes. Cost effective alternative to 
institutionalization. Administration strong in fiscal monitoring." 
Program's Weak Points: "Need more stringent standards for breaks in service, replacing no-
show attendants. Initial eligibility assessment can be time-consuming. High turnover in 
attendants because of low wages, no benefits." 
Changes Being Contemplated: "Changes around service breaks. Procurement for 
competitive bidding for private agencies." 

Changes Since 1984 

On site review of provider performance based on service standards. 
The PHC provider manual has been rewritten to ensure statewide conformity. 
Improved management information system. 


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Appendix A, Page 47 

Homemaker-Personal Care Program 
Utah Department of Health 
288 North 1460 West 
Salt Lake City, Utah 84116 
(801) 538-6636 
Program Implemented: 1983 


This program was split between the time of the two surveys; personal services are now provided 
through the Division of Health Care Financing rather than Aging and Adult Services, and 
homemaker services are provided through the Department of Social Services (currently being 
phased out). 

Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: RueDell Sudweeks, Health Program Specialist 

Cosette Mills, Program Specialist 

Total Expenditures: $182,577 $938,765 
Medicaid Expenditures: $136,002 (74%) $35,000 (3.7%) 
Other Expenditures: State $46,575 (26%) $610,197 (65%) 


Title )0C $279,568 (29.8%) 
Total Number of Clients Served: 200 500 (141 for personal care, 359 for household 
services). 
Total Hours of Service Provided: 19,778 84,500 
Cost Per Hour of Service: $9.23 $11.11 
Provider Mode: private agencies, state and local government staff. 
Entitlement Program: yes 

Independent Living Rating: low 
Program Goals: to prevent institutionalization, to enable people to stay in their own home 
and community, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: $4,000 excluding home, personal items in the home, car, burial 
insurance. 
Maximum Client Income: $3,636 $5,256, excluding excessive medical costs, health 
insurance payments, housing costs which exceed 30% of income, funeral costs for family 
members. 
Type of Disabilities Eligible: na 
Age Groups Eligible: all ages over 18. 
Other Requirements: SSI, Medicaid or SSDI eligible, at risk of institutionalization, RN 
assessment. 
Number of Applicants Considered Ineligible: na 


Administrative Profile 
Administrative Agency: Division of Aging and Adult Services. 
Types and Quantity of Services Assessed By: case management agency assessment team, 
program director. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 48 

Factors for Assessment: functional abilities (ADLs), accessibility of environment, services 
needed, budget limitations of program. 


Consumer Profile 


Age Ratio: 28% 18-64, 26% 65-74, 45% over 75. 
Sex Ratio: 14% male, 85% female. 


Ethnicity Ratio: 6% black, 4% hispanic, 1% native american, 89% white. 


Disabilities Served: na 


Average income: na 
Income Source: na 
Number Who Left Institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 


Attendant Profile 
Private Agencies 
Hourly Wage: $4.25 


Reimbursement to Agencies: $7.00 


Benefits: varies depending on agency. 


Attendant Requirements: graduate of agency program. 
Who Hires/Fires Attendant: agency. 
Who Pays Attendant: agency. 
Government Agency 


Hourly Wage: $4.00 


Benefits: social security. 


Attendant Requirements: graduate of state agency training program. 
Who Hires/Fires Attendant: government agency. 
Who Pays Attendant: government agency. 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, oral hygiene and grooming, skin care, foot care, range of motion. 
Household Services: light cleaning, laundry, shopping, meal preparation, meal cleanup and 
menus, coal and ash cleanup. 

Communication Services: none 

Transportation Services: none 

Short-Term Services: emergency services available. 

Medical Supervision Required for Some Services: yes supervision required every six 

months for personal care services. 

Recipients Participate in Decisions r.e. Service Allocation: no 
Services Available 7 days per Week, 24 hours per Day: no 
Service Limits: 15 hours per week, $570 per month. 
Average Weekly Hours Provided Per Consumer: 6 

italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 49 

Administrator Comments 
Program's Strong Points: "Available in all areas of the state, including rural areas. Cost 
kept down. People who need minimum services can get care without Homehealth Aide." 
Program's Weak Points: "Complex system of administration, dcult to coordinate. Varies 
all over state. Poor reporting process." 
Program Changes Being Contemplated: "Bringing up eligibility criteria to 150% of poverty 
level and using a sliding fee schedule. Establishing a uniform method of service delivery. 
Improving reporting method." 


Changes Since 1984 

Developed functional assessment tool. 
Annual review by Health Care Financing. 

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Appendix A, Page 50 

Medicaid Personal Care 
Aging and Adult Services Administration 
623 8th Ave. SE 
Olympia, WA 98504-0095 
(206) 586-4746 
Program Implemented: 1989 


Interviewee: Rick Bacon, Community Services Program Manager 
Fiscal or Calendar Year 1989 Data and Projections 


Total Expenditures: $34,000,000 
Medicaid Expenditures: $18,020,000 (53%) 
Other Expenditures: State $15,980,000 (47%) 
Total Number of Clients Served: 5,864 (projected) 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: individual providers and agency providers. 
Entitlement Program: yes 


Program Eligibility Attendant Requirements 


Maximum Client Income: $4,992 per year 
Age Groups Eligible: all 
Disability Groups Eligible: physical disability, brain injury or trauma 
Other Eligibility Requirements: Medicaid recipient or eligible, SSI recipient or eligible, 
family unable/unwilling to provide services, physician's orders 

Attendant Profile 
Independent Providers 

Hourly Wage: $5.36 
Benefits: na 
Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: no 

Agency Providers 

Hourly Wage: $5.15-5.36 
Benefits: vary by individual agencies 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, menstrual 
care, ambulation, moving in and out of bed, oral hygiene and grooming, skin care, 
respiration, care and assistance with prosthesis, catheterization, medication, foot care. 
Household Services: light cleaning, heavy cleaning, laundry, meal preparation and cleanup, 
meal planning, grocery and other shopping. 
Communication Services: none. 
Transportation Services: medical escort and driving only. 
Short-Term Services: emergency services available. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 51 

Medical Supervision Required for Some Services: yes 
Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per week, 24 hours a day: yes 
Service Limits: $772.10 per month 
Average Weekly Hours Provided Per Consumer: na 

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Appendix A, Page 52 

Personal Care Aide Services Program 
Home Care Services Bureau 
Department of Human Services 
19th & Massachusetts Ave. SE 
Building 16, DC General Hospital 
Washington, DC 20003 
(202) 727-0268 
Program Implemented: 1984 


Fiscal or Calendar Year 1984 and/or 1988 Data 
Interviewee: Inez Atwell, Chief of Home Care Services Bureau 

Louise Earlbeck, Director 

Total Expenditures: na $3,600,000 

Medicaid Expenditures: na $1, 700,000 (48%) 
Other Expenditures: District na $1,900,000 (52%) 

Total Number of Clients Served: na 900 

Total Hours of Service Provided: na 1,016,409 
Cost Per Hour of Service: na $3.54 

Provider Mode: agency providers and independent providers 

Entitlement Program: no (74 people on waiting list) 

Independent Living Rating: medium 
Program Goals: prevent institutionalization, to enable people to stay in their own home and 
community, to contain costs associated with long-term care. 

Program Eligibility Requirements 

Maximum Client Assets: na 
Maximum Client Income: $4596 $4200 excluding medical expenses 
Type of Disabilities Eligible: physical disability, brain injury, mental illness. 
Age Groups Eligible: all over 18. 
Other Requirements: Medicaid eligible, physician's orders, living in own home or apartment 
or with family. 
Number of Applicants Considered Ineligible: 15-20 


Administrative Profile 


Administrative Agency: Home Care Services Bureau. 
Types and Quantity of Services Assessed By: RN with physician's approval. 
Factors for Assessment: physician's recommendation, functional abilities (ADLs), services 
needed. 


Consumer Profile 


Age Ratio: na 
Sex Ratio: 15% male, 85% female. 


Ethnicity Ratio: 92% black, 2% hispanic, 3% white. 


Disabilities Served: physical disability, brain injury, mental illness. 


Average Income: na 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 53 

Income Source: na 
Number Who Left institutions Because of the Program: na 
Number Who Could Leave Institutions If Program Were Expanded: na 

Attendant Profile 
Independent Providers 
Hourly Wage: $4.00 
Benefits: none. 
Attendant Requirements: attendant must be 18 or older, able to read and write, complete 
training program. 
Family Regulations: no parent, in-law, child or any relatives residing in the same home. 
Consumer Can Hire/Fire Attendant: na 
Consumer Can Pay Attendant: na 
Consumer Can Train Attendant: na 

Agency Providers 

Hourly Wage: $7.00 
Benefits: none 


Program Services Available 
Personal Services: bowel and bladder care, feeding, bathing/showering, dressing, 
ambulation, moving in and out of bed, oral hygiene and grooming, skin care, care and 
assistance with prosthesis, range of motion, foot care, catheterization, injections, 
medication, menstrual care. 


Household Services: light cleaning, laundry, grocery and health-related shopping, meal 


preparation, cleanup and planning. 
Communication Services: making telephone calls, getting assistance from agencies in the 
community, interpreting, reading. 
Transportation Services: medical escort only. 
Short-Term Services: none 
Medical Supervision Required for Some Services: RN supervision every month for all 
services. 


Recipients Participate in Decisions r.e. Service Allocation: yes 
Services Available 7 days per Week, 24 hours per Day: no 
Service Limits: none 
Average Weekly Hours Provided Per Consumer: 30-35 20 

Administrator Comments 
Program's Strong Points: "Maintaining people at home, many of whom would otherwise be 
in a nursing home." 
Program's Weak Points: "Aides are underpaid- could get better quality aides with better pay 

and benefits." 

Changes Since 1985 

Monthly telephone monitoring, biannual nurse visits 
Professional advisory committee 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 54 

Personal Care Option 
Department of Health and Human Resources 
Medical Services Bureau 
Building 6, Capitol Complex 
Charleston, West Virginia 25305 
(304) 348-8990 
Program Implemented: 1987 


Interviewee: Auburn Cooper, Assistant Director 
Fiscal or Calendar Year 1988 Data 

Total Expenditures: $4,000,000 
Medicaid Expenditures: $3,040,000 (76%) 
Other Expenditures: State $960,000 (24%) 
Total Number of Clients Served: 7,500 
Total Hours of Service Provided: na 
Cost Per Hour of Service: na 
Provider Mode: individual providers only. 
Entitlement Program: yes 

Program Eligibility Attendant. Requirements 

Maximum Client Income: $16,200 
Age Groups Eligible: over 18 
Disability Groups Eligible: physical disability, brain injury or trauma 
Other Eligibility Requirements: medicaid recipient or eligible, physician's orders. 

Attendant Profile 
Independent Providers 

Hourly Wage : $5.00 
Benefits: none 
Consumer Can Hire/Fire Attendant: yes 
Consumer Can Pay Attendant: no 
Consumer Can Train Attendant: no 


Program Services Available 
Personal Services: feeding, bathing/showering, dressing, menstrual care, ambulation, 
moving in and out of bed, oral hygiene and grooming. 
Household Services: light and heavy cleaning, laundry, meal planning preparation and cleanup, 
grocery and other shopping, chore services, repairs, maintenance, renovation, taking care 
of children, scheduling household tasks and deciding who will do them, paying bills, 
budgeting. 
Communication Services: making telephone calls, writing letters, handling money or 
checks, getting assistance from agencies in the community, handling paperwork for paid 
helpers, interpreting, reading. 
Transportation Services: medical driving and escort only. 


Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


Appendix A, Page 55 

Short-Term Services: emergency and respite services available. 

Medical Supervision Required for Some Services: yes 

Recipients Participate in Decisions r.e. Service Allocation: yes 

Services Available 7 days per week, 24 hours a day: varies 

Service Limits: $110 per month. 

Average Weekly Hours Provided Per Consumer: na 

Administrative Services: eligibility determination, needs assessment, provider recruitment, 

referral, training and supervision. 

Italic Type = 1985 Survey Data Plain Type = 1988 Survey Data 


APPENDIX B: 

THE EFFECT OF GOVERNMENT FUNDING SOURCE 
ON PERSONAL ASSISTANCE PROGRAMS: 
A SUMMARY OF 1985 NATIONAL SURVEY DATA 



Table of Contents 
Section Page 

I. Introduction 
Funding Sources 2 
Hypotheses 5 


II. Methodology 
Subjects 6 

Materials 7 
Procedure 7 
Reliability and Validity 7 

III. Results 
Average Size of Programs, Total Expenditures, Client Load, 

Expenditures Per Client, Total Hours of Service, Cost Per Hour 
of Service and Hours of Service Per Client 10 
Scope of Services Provided 12 
Medical Supervision Requirements 15 

Availability of Program Services 16 
Service Limits 17 
Eligibility Requirements: Maximum Income and Assets 18 
Eligibility Requirements: Age 20 
Eligibility Requirements: Disability Group 20 
Other Eligibility Requirements 21 
Provider Mode 22 
Attendant Wages and Benefits 23 
Regulation of Independent Providers 25 
Circumstances Under Which Family Members 

Can Become Paid Providers 25 
The Impact of Provider Mode on Consumer Control 
and Average Hours of Service Provided 26 

Program Age 29 

IV. Discussion 30 

Appendix A: Survey Instrument 37 


List of Tables and Figures 
Table Page 

1. Program Location and Funding Source 3 

2. Average Total Expenditures, Client Load, Expenditures 
Per Client, Total Hours of Service, Cost Per Hour of 
Service and Hours of Service Per Client 11 

3. Scope of Services Provided 13 

4. Average Number of Total Services and Paramedical 
Services Provided 15 

5. Medical Supervision Requirements 16 

6. Frequency of Medical Supervision 16 

7. Days and Times Service is Available 17 

8. Service Limits 18 

9. Income Eligibility Requirements 19 

10. Asset Eligibility Requirements 19 

11. Age Eligibility Requirements 20 

12. Disability Group Eligibility 21 

13. Other Eligibility Requirements 22 

14. Provider Mode 23 

15. Average Attendant Wages and Benefits 24 

16. Independent Provider Regulation 25 

17. Regulation On Family Members Providing 
Paid Attendant Services 26 

18. Average Program Age 29 


Appendix B, Page 1 

The Effect Of Government Funding Source On Personal Assistance Programs: 
A Summary Of 1985 National Survey Data 


Data from a nationwide 1985 survey of 157 attendant service programs, originally 
presented in Attending to America: Personal Assistance for Independent Living] , is reanalyzed to 
examine the impact of primary government funding source on various program features, 
including; program expenditures, number of clients, hours of service provided, scope of services, 
medical supervision requirements, service availability, service limits, eligibility requirements, 
provider mode, attendant wages and benefits, program philosophy, and program age. Summary 
statistics are presented, and a brief discussion of the implications of these findings suggests 
specific case studies of select programs in order to examine key variables in greater detail. 

In 1985, the World Institute on Disability conducted the first nationwide survey of 
government-funded programs for people of all ages with disabilities which offer personal 
maintenance and/or household/domestic service on a long-term basis or short-term (respite) basis. 
The resulting monograph, Attending to America: Personal Assistance for Independent Living 
(Litvak, Heumann and Zukas, 1987), provided an overview of personal assistance programs 
throughout the United States. It also highlighted the lack of a comprehensive federal policy and 
integrated funding for personal assistance services (PAS), which led to a basic research question: 
how do the various funding sources (and their concomitant regulation) affect the design of these 
programs? The present research will address this question by examining the impact of disparate 
funding sources on personal assistance programs. The following is a list of primary government 
funding source catagories, and the distribution of these funding sources among the 157 programs 
surveyed. 

1 •

Litvak, S., J. Heumann, & H. Zukas (1987) Attending to America: Personal Assistance for Independent Living. 
Berkeley, CA:: World Institute on Disability. 


Appendix B, Page 2 

Funding Source 

A total of 157 programs from 49 states and the District of Columbia were included in the 
present study (Table 1). These programs are divided into one of the following eleven groups on the 
basis of federal funding source, although all programs were supplemented with state funds (see 
Litvak et. al., 1987, for a full discussion of funding sources): 

la) TXIX Only- Title XIX (Medicaid) PC-Option funding only (n=13). 

lb) TXIX Mixed- Title XIX (Medicaid) PC-Option funding combined with other federal 

funding (n=7). 

2) TXIX Waiver- Title XIX (Medicaid) Waiver funding (n=39). 

3) SSBG- Title XX (Social Services Block Grant) funding only (n=34). 

4) THI- Title HI (Older Americans Act) funding only (n=21). 

5a) State Only- State funding only (n=23). 

5b) State Spplt.- State Supplement to Social Security Insurance (n=4). 

5c) TVII- Title VII A or B funding only (n=3). 

6a) Other- Mix of federal funding other than Medicaid (n=5). 

6b) TXIX-HHA Only- Title XIX (Medicaid) funded home health agencies (n=4). 

6c) TXIX-HHA Mixed- Title XIX (Medicaid) funding combined with other 

funding (n=4). 

Group la consists of programs funded by the Title XIX PC-Option. The Medicaid PC-
Option is a part of the original Medicaid legislation introduced in 1965. The PC-Option legislation 
mandates a physician's prescription for services and the supervision of non-family providers by a 
registered nurse. Otherwise there is no regulation and programs vary in their degree of medical 
emphasis. Group lb programs are funded primarily by the Title XIX PC-Option, but have other 
sources of federal funding as well. Statistical tests indicated that there were no significant 
differences between these two groups, so they were combined into a single "Title XIX PC-Option" 
group for all analyses presented in this report. 

Group 2 is composed of programs funded by Title XIX waivers. These programs, begun 
in 1979 on a demonstration basis, are the result of a legislative concern about burgeoning nursing 
home costs. Programs are required to demonstrate that the services they offer are less costly than 
nursing home or hospital care. Many states apparently utilize this new source of federal money to 


Appendix B, Page 3 

Table 1: Program Location and Funding Source 

5.141k 

AL 
AK 
AZ 
AR 
CA 

CO 
CT 
DE 
FL 
GA 

HI 
ID 
IL 
IN 
IA 

KS 
KY 
LA 
ME 
MD 

MA 
MI 
MN 
MS 
MO 

MT 
NE 
NV 
NH 
NJ 

TXIX 
Only Mixed 

1 

1 

11 

1 
1 

1 

1 
1 
1 
1 
1 

Waiver 

1 

2 

1 
2 

2 
1 

1 
2 
1 
1 

1 
1 

1 

1 
1 

2 

1 

1 
2 

auQ State 1111 Tvil Other TXIX-HHA Total 
Only Spplt. Only Mixed 

11 3 
111 3 
11 
12 
1 14 

11 14 

1 115 
1 12 
111 5 
12 

11 3 
13 
12 
1 114 
1 12 

111 4 
11 3 

o 
13 5 
11 3 

21 6 
13 
12 
11 2 
111 6 

1 14 
23 
1 114 
11 4 
3 


Appendix B, Page 4 
Table 1: Program Location and Funding Source (continued) 
TXIX SSBG State TM TVII 
Only Mixed Waiver Only Spplt. 
Other TXIX-HHA 
Only Mixed 
Total 

NM 
NY 
NC 
ND 
OH 
1 1 
2 
1 
1 
2 
2 
2 
1 
2 
1 
1 
1 
1 
1 
5 
6 
2 
1 
6 
OK 
OR 
PA 
RI 
SC 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 1 
2 
1 
3 
4 
2 
SD 
TN 
TX 
UT 
VT 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 3 
1 
4 
3 
2 
VA 
WA 
WV 
WI 
WY 
DC 1 
1 
1 
1 
1 
1 
1 
1 
1 
1 
1 
4 
2 
2 
2 
6 
1 
2 
Totals 13 7 39 34 23 4 21 3 6 4 3 157 

create programs for populations not being adequately served by other programs (e.g. people with 
AIDS, children with disabilities). 

Group 3 consists of programs funded by Title XX of the Social Security Act or the Social 
Services Block Grant (SSBG). Many states provide some sort of home services with Title XX 
funds, but few have developed comprehensive attendant services including both personal "care" 
and household services. Notable exceptions are California's In-Home Supportive Services 
program (LHSS) and Pennsylvania's Attendant Care Program. 


Appendix B, Page 5 

Group 4 programs are funded by Title III of the Older Americans Act, which is directed to 
people over the age of 60. These programs do not have income eligibility rules, though federal 
regulations encourage local Area Agencies on Aging to target poorer people. 

Group 5a programs are funded exclusively by state resources, and state agencies are in 
charge of all aspects of these programs. Group 5b consisted of programs which provide state 
supplements for PAS directly to Social Security Insurance (SSI) recipients, generally with little 
monitoring of how recipients use the supplement. Group 5c programs are funded by state 
resources, with some Title VII funds. These three groups have been combined into a single "State 
Funding" group for all analyses. 

Group 6a consists of programs funded by more than one source of non-Medicaid federal 
funding, primarily Title III and SSBG. Group 6b programs are funded by Title XIX home health 
funds; Group 6c programs are funded by Title XIX home health funds and other federal funds. 
Group 6b and 6c programs are included in this report because, although are not specifically 
intended for personal assistance but rather for home health services, in several states they have in 
fact become de facto personal assistance programs, providing long-term PAS to people with 
disabilities. Because the number of programs in each of these subgroups was very small, the 
three groups are combined into a single "Other Funding" group for these analyses. 

Hypotheses 

It is hypothesized that these funding groups will differ significantly on a number of key 
variables, including; program expenditures, number of clients, hours of service provided, scope 
of services, medical supervision requirements, service availability, service limits, eligibility 
requirements, provider mode, attendant wages and benefits, program philosophy, and program 
age. 


Appendix B, Page 6 

Methodology 

Subjects 

One hundred and seventy-five programs were contacted. Nineteen of these were not 
included in this study because of inadequate statewide data, or because the administrator refused to 
be interviewed. 

Several types of programs were not included in this survey. Protective service programs 
(those aimed at preventing abuse or neglect of adults and children) were only included if these 
programs served people on a long-term basis. Programs targeted exclusively for people with 
mental illness or mental retardation were not included. Temporary services for people who are 
acutely ill or for those in transition from the hospital, nursing home or institution to the community 
were also not included. In addition, shared attendant programs in congregate living arrangements 
were not included. Finally, purely household/domestic service programs were not included if there 
was no program providing personal services in the state with which the domestic program could be 
paired to provide a full range of attendant services. 

Materials 

An 18-page questionnaire was developed by reviewing current reports on attendant service 
programs and the limited research literature. A copy is provided at the end of this report. 

Procedure 

Data was gathered through two methods: telephone and mail surveys. In general, the state 
administrator of the specific program or the head of the administering public agency was contacted. 
In a few cases, the state agency delegated full responsibility for administration and data collection 
to a Center for Independent Living, so the administrator of that program was contacted. 

Telephone interviews of 118 program administrators were conducted from February to 
September, 1985. A copy of the questionnaire was mailed at least two weeks before the scheduled 


Appendix B, Page 7 

interview, so the administrator could gather the necessary data. In the interest of time, a mail 
survey was conducted from September,1985 to January,1986, to gather data on the remaining 39 
programs. All questionnaires were examined by the principal investigator for internal consistency, 
and respondents were called to clear up any discrepancies. 

Reliability and Validity 

The survey is intended to gather specific information based primarily on objective, written 
data from program regulations and annual budgets and reports. However, management 
information systems (MIS) were not in place for some of the programs surveyed. Among 
programs which did have management information systems, the data available was often 
incomplete or not comparable to data from other programs. Demographic breakdowns of client 
populations and specific budgetary breakdowns, for example, were generally unavailable. 

The low response rate on some questions may also indicate that some administrators were 
unable to convert their information into the stated categories. For example, there was a high 
percentage of missing data on consumer income and asset limits. This may be due to the variety of 
income and asset deduction allowances in a given program which made a single figure difficult to 
derive. 

Overall, despite the objective nature of the data requested, the reliance on the knowledge of 
a single administrator may also limit reliability. In some cases, the administrator was new to the 
program or position, or he/she had little to do with particular aspects of the program (e.g. 
assessments). When there appeared to be a major gap in the administrator's knowledge of a 
particular program aspect, an attempt was made to contact other program representatives. For the 
most part, however, the data administrators provided was simply recorded as it was presented. 

The expenditure and caseload data has notable limitations. Whenever possible, this data 
was recorded for fiscal or calendar year 1984, but in two cases the programs could only provide 
figures from 1983 data, twenty-eight programs could only provide information for FY 1985, and 
three programs had only budget estimates and caseload goals for FY 1986. No attempt was made 
to convert these figures to 1984 levels using the consumer price index or other means. This 
particular data may also be skewed by the inability of some administrators to break out PAS 


Appendix B, Page 8 

recipients and program costs from total program caseloads and expenditures. For example, some 
Title III programs include a wide array of services unrelated to PAS. When the figures stated 
obviously included such services, they were dropped from the analyses. However, Title III 
programs on the average appear to have inflated caseloads despite this precaution. 

The key validity issue is whether the concepts and definitions used in this study are 
sufficiently clear and precise. The definition of what constitutes a PAS program, and how this 
determination is made, is of primary importance. Identifying PAS programs and contacting 
administrators proved to be a difficult and time-consuming task. It is unlikely that all PAS 
programs in the U.S. which meet the stated criteria were contacted. Independent Living Programs 
(ILPs), Medicaid programs and social services departments were contacted in each state, and asked 
for a complete list of personal assistance programs and program administrators in that state. Each 
of these administrators was then contacted to determine if the program was a short-term (respite) 
program, or a long-term personal management/hygiene, household maintenance or attendant 
program. It is possible that some of the programs surveyed may in fact not meet either of these 
criteria. For example, distinguishing Medicaid HHA programs which target people who are 
chronically ill and in need of significant amounts of medical services on an intermittent basis from 
those programs which offer PAS on a long-term basis was difficult. The identification and 
inclusion of such programs were often based on the administrator's judgement as to whether 
his/her program actually fit the stated criteria. The opposite problem occurred with some program 
administrators who had a very narrow concept of attendant services, e.g. programs for disabled 
working age people who are employed or employable. In such cases the administrator had to be 
convinced that if, for example, the program only served older people for a few hours a week on a 
regular basis, that it was in fact an attendant service program. 

It should also be noted that in some cases, the respondents indicated that there was a 
difference between what the program was supposed to do, according to regulations, and what the 
program actually did. For example, some programs which utilized independent providers did in 
fact offer paramedical services, despite regulation to the contrary. In order to avoid the 
discrepancy, the respondent was asked to report what was in the rules and regulations, but this 
may not have always occurred. 


Appendix B, Page 9 

Results 

Size of Program, Total Expenditures, Client Load, Expenditures Per Client, Total Hours of 
Service, Cost Per Hour of Service and Hours of Service Per Client 

Size of program, total program expenditures, number of clients served, expenditures per 
client, total hours of service provided, cost per hour of service provided, and hours of service 
provided per client, were compared by funding source, utilizing analyses of variance (ANOVAs). 
Some significant relationships emerged, although there was often high variance within the six 
funding groups. 

The average total number of clients per program differed significantly between groups; F 
(5,125) = 14.11, _u < .001. Title III programs had the highest average number of people 
(78,890,000) and Waiver programs had the lowest average number (1,920). The average 
expenditures per person per program varied significantly between groups; F (5,125) = 2.77, p < 
.05. Medicaid Waiver programs had the highest mean expenditures per person ($4,810), while 
Title III programs had the lowest ($250). The average hours of service per person per week also 
varied significantly by funding source; F (5,68) = 4.77, p < .001. State programs had the highest 
average weekly hours of service (26.4 hours per person), and Title III programs had the lowest 

(2.3 hours per person). 
The total expenditures, total hours of assistance provided to all clients, and the cost per 
hour of assistance did not significantly vary between funding groups. Overall, PC-Option 
programs had the highest average total program expenditures, $35.72 million per program, and 
Medicaid Waiver programs had the lowest, $3.25 million. PC-Option programs also had the 
highest average cost per hour of service ($13.48/hour), while State programs had the lowest 
($7.08/hour). Title XX programs provided the greatest average total hours of PAS (13,450,000) 
and State programs provided the lowest average total hours (210,000). 


Appendix B, Page 10 

Table 2: Average Total Expenditures, Client Load, Expenditures Per Client, Total Hours of 

Service, Cost Per Hour of Service and Average Hours of Service Per Client 

Funding Source TXIXPC 
TXIXWaiver 
SSBG TTII State Other Total 
Average Annual Expenditures 
in $ millions 
Number of Responses 
35.72 
19 
3.25 
28 
14.24 
31 
7.11 
17 
4.91 
30 
12.14 
13 
11.86 
138 1.36 
Average Total Clients 
in thousands 
Number of Responses 
7.77 
18 
1.92 
35 
9.10 
32 
78.89 
16 
3.25 
27 
3.93 
12 
13.54 
140 14.13** 
Average Annual Expenditures Per Client 
in $ thousands 
Number of Responses 
3.82 
17 
4.67 
25 
1.49 
30 
.25 
15 
4.23 
27 
1.40 
12 
2.87 
126 2.68* 
Average Total Hours of Attendant Care 
in millions 
Number of Responses 
7.12 
12 
.29 
7 
13.45 
15 
2.40 
7 
.21 
11 
.30 
6 
5.35 
58 .90 
Cost Per Hour of Service 
in dollars/hour 
Number of Responses 
13.48 
12 
8.01 
6 
7.36 
14 
12.41 
6 
7.08 
11 
8.47 
6 
9.38 
55 .43 
Average Hours Per Client Per Week 
in hourslweek 
Number of Responses 
19.7 
14 
18.7 
12 
8.4 
19 
2.3 
3 
26.4 
14 
5.4 
7 
15.6 
69 4.87** 
* p < .05 ** p < .01 


Appendix B, Page 11 

Scope of Services Provided 

The majority of all programs surveyed provided a core of basic services such as dressing, 
bathing, oral hygiene and grooming, feeding, transfers, ambulation, skin maintenance, bowl and 
bladder assistance, prosthesis/range of motion, medications, menstrual assistance, meal 
preparation, clean up and menus, light cleaning, laundry, shopping, chores, case management and 
escort (Table 3). 

Table 3: Scope of Services Provided 

Funding Source TXDC- TXIX- TXX Till State Other Total 
PC Waiver 

Personal Maintenance/Hygiene 
Number of Responses 20 37 32 18 29 11 147 
Percentage of Responses 
Dressing 100 100 94 94 100 100 98 
Bathing 100 100 91 94 97 100 97 
Oral Hygiene and Grooming 100 100 88 89 97 100 95 
Feeding 100 100 84 78 100 100 94 
Transfers 90 100 81 89 97 91 92 
Ambulation 95 100 75 83 93 91 90 
Skin Maintenance 95 97 72 67 90 91 86 
Bowl and Bladder Assistance 95 92 50 72 86 82 79 
Prosthesis Assistance/Range Motion 85 78 50 56 72 82 69 
Menstrual Assistance 85 65 38 86 73 59 
Medications 70 68 41 61 66 82 62 
Respiration 30 46 31 33 62 73 44 
Catheter Assistance 35 49 28 39 52 73 44 
Injections 25 49 22 39 41 73 39 


Appendix B, Page 12 

Table 3: Scope of Services Provided (continued) 

Funding Source TXIX-TXX Tiff State Other Total 
PC Waiver 

Household Assistance 

Number of Responses 17 38 37 20 29 8 145 

Percentage of Responses 

Meal Preparation 100 95 100 90 93 100 96 
Light Cleaning 100 97 97 95 97 88 97 
Meal Clean-up/Menus 100 95 100 90 93 100 96 
Laundry 100 95 97 90 93 88 95 
Shopping 88 87 97 100 90 88 92 
Chores 35 58 73 95 76 75 68 
Heavy Cleaning 41 47 49 60 62 63 52 
Repairs/Maintenance 23 29 36 60 55 63 41 

Related Services 

Number of Responses 15 38 34 20 27 10 144 

Percentage of Responses 

Transportation 80 68 79 95 67 70 76 
Case Management 73 87 59 75 67 60 72 
Escort 80 55 65 50 48 40 59 
Telephone Counseling 26 8 29 95 22 20 30 
Readers 7 11 27 50 15 20 21 
Interpreters 13 8 18 20 15 10 14 
Respite 47 76 53 70 52 70 62 

Services considered crucial to independent living were not provided by many of the 

programs surveyed. Roughly half of the PC-Option, Title XX and State programs did not provide 
respite assistance, while three quarters of Waiver programs offered respite. Important paramedical 
services such as respiration, catheter assistance and injections were not provided by most 
programs. A sum of all services provided in each program (maximum = 29), as well as a sum of 
specifically paramedical services (maximum = 4), were calculated as rough measures of 


Appendix B, Page 13 

comprehensiveness, and average scores for each funding group were compared (Table 4). There 
were no statistically significant differences between funding groups on either of these measures, 
although the "Other" category, which included seven Medicaid HHA programs, had the greatest 
average scope of paramedical services, while state and Medicaid Waiver programs had the greatest 
average scope of total services. 

Table 4: Average Number of Total Services and Paramedical Services Provided 

Funding Source TXIXTXIXSSBG 
THE State Other Total 
PC Waiver 
Number of Responses 20 39 34 21 30 13 157 

Average Sum of Services 

19.7 20.6 18.8 19.6 21.0 17.4 19.8 
Average Sum of Paramedical Services 

 

1.6 2.0 1.1 1.5 2.1 2.51.8 
Medical Supervision Requirements 

The majority of Title XX programs did not require any medical supervision (Table 5). Title 
XIX Personal Care-Option programs were most likely to require medical supervision for all 
services. Of the programs which specified frequency of medical supervision, most required a visit 
with a medical professional every one or two months (Table 6). 


Appendix B, Page 14 

Table 5: Medical Supervision Requirements 

Funding Source TXIX-DUX- SSBG Till State Other Total 
PC Waiver 

Number of Responses 20 37 32 19 30 12 150 

Percentage of Responses 

Amount of Medical Supervision Required 
None 
For Some Services 
For All Services 
10 
35 
55 
5 
49 
46 
75 
25 
47 
53 
67 
13 
20 
33 
25 
42 
41 
33 
26 

Table 6: Frequency of Medical Supervision 

Funding Source TX1X-TXIX- SSBG ME State Other Total 
PC Waiver 
Number of Responses 16 31 4 4 10 6 71 

Percentage of Responses 
Frequency of Supervision 

1 mo. 25 58 50 7540 50 48 
2 mo. 38 23 25 17 21 
3 mo. 19 7 2525 33 13 
6 mo. 137 30 10 
12 mo. 67 30 9 

Availability of Program Services 

Most programs surveyed (71%) did not limit the times that services could be provided 

(table 7). State programs were the least likely to limit availability (4%), while approximately 80% 

of Title III programs offered services less than 7 days a week and less than 24 hours a day. 


Appendix B, Page 15 

Table 7: Days and Times Service is Available 

Funding Source TXIX- TXIX- SSBG TM State Other Total 
PC Waiver 

Number of Responses 17 38 31 19 28 9 142 

Percentage of Responses 
Days and Hours Services are Available 


24 hrs./day; 7 days/week 82 90 58 11 96 67 71 

<24 hrs./day; 7 days/week 6 3 3 11 4 11 5 

<24 hrs./day; <7 days/week 12 8 39 79 22 24 

Service Limits

0 

Although the majority of programs did not limit the days or times services were available, 

this did not mean that a person could receive around the clock assistance. About 23% of all 

programs limited the total number of hours of service per week, and another 30% limited 

expenditures per person. 

These service limits were converted to a single measure: expenditure limits were converted 
to hour limits by dividing the weekly expenditure limit by the average attendant hourly wage 
($4.02/hour). Seventy-one percent of PC-Option programs had some degree of service limit 
(Table 8), usually limiting hours to less than 40 per week. The Medicaid Waiver programs had the 
most generous limits: 68% of the programs allowed over 40 hours per week. Title III programs 
generally did not limits hours of service, although these programs actually provided the lowest 
average number of hours per person. This apparently indicates that programs with "no limits" may 
not explicitly state a per person limit, but probably limit service by overall program budget 

allocation or some other means. 

In general, there was no significant correlation between the stated service limits and the 
actual average hours of service provided per client. However, on a case by case basis, the higher 

service limit should allow for a greater amount of service to people who need it. Higher service 

limits were correlated with greater scope of paramedical services (r_ =.25, p < .05) and total 

services (r =.25, < .05). 


Appendix B, Page 16 

Table 8: Service Limits 

 

Funding SourceTXDC- TXIX- SSBG 111I State Other Total 
PC Waiver 

 

Number of Responses20 35 32 15 27 7 136 
Percentage of Responses 

Hours/Week Limit 

< 20 20 8 25 19 29 17 
21-30 15 8 9 19 14 11 
31-40 10 3 13 33 14 13 
over 40 25 62 3 26 27 
No Limits 30 21 50 100 4 43 32 

Eligibility Requirements: Maximum Income and Assets 

Income eligibility requirements (Table 9) were generally most strict for PC-Option 
programs. Ninety percent of these programs required that the income of recipients be at or below 
the 1984 poverty level ($5,200/year for a single person in the continental US). State and Waiver 
programs tended to have less restrictive income limits. No Title 111 programs limited income or 
assets. Title XX and State programs had the least strict asset requirements (Table 10), although the 
regulation of asset deductions varied greatly among individual programs (i.e. some programs 
considered only cash assets for eligibility, while other programs included a wide array of non-cash 
assets such as homes, cars, and insurance policies). 


Appendix B, Page 17 

Table 9: Income Eligibility Requirements 
Funding Source 
TXIX- TXIX- SSBG TM State Other Total 
PC Waiver 
Number of Responses 
10 26 22 21 15 6 100 
Percentage of Responses 
Maximum Income by Poverty Level a 
= or < PL 90 39 32 13 50 31 
= or < 200% PL 10 19 50 40 50 26 
over 200% PL 42 18 47 23 
No limit 
100 21 
a Poverty Level = $5,200/year for a single person in the US in 1984 (except Hawaii and Alaska) 
Table 10: Asset Eligibility Requirements 
Funding Source 
TXIX- TXIX- SSBG THI State Other Total 
PC Waiver 
Number of Responses 
11 28 4 21 7 5 76 
Percentage of Response 
Assetsb 
= or < $1,500 27 46 25 57 60 32 
< $2,000 18 46 25 20 22 
< $4,500 55 4 9 
< $10,000 4 50 43 20 9 
No limit 100 28 
b Asset exclusions varied widely among programs 


Appendix B, Page 18 

Eligibility Requirements: Age 

All Title III programs targeted older people (Table 11). State programs and Title XX 
programs were more likely to target working-age adults. Four of the six programs directed 
exclusively at children were Waiver programs. Most PC-Option programs were open to people of 
all ages. 

Table 11: Age Eligibility Requirements 

 

Funding SourceTXIX- TXIX- SSBG 'MI State Other Total 
PC Waiver 

 

Number of Responses20 39 34 20 29 12 154 

Percentage Of Responses 

Age Groups Eligible 
All Ages 
< 65 
< 18 
> 18 
> 60 or 65 
75 
20 
5 
46 
10 
28 
15 
41 28 
9 28 
3 
38 30 
9 100 14 
67 
8 
8 
17 
41 
7 
4 
25 
23 

Eligibility Requirements: Disability Group 

Most PC-Option, Title XX, and Other programs considered all disability groups eligible 
(Table 12). In contrast, only 34% of Waiver programs were open to all disability groups. 
Overall, 42% of all programs excluded people with mental retardation or other cognitive 
disabilities. 


Appendix B, Page 19 

Table 12: Disability Group Eligibility 

 

Funding SourceTXDC- TXIX- SSBG TEE State OtherTotal 
PC Waiver 

 

Number of Responses19 32 32 18 28 9 138 
Percentage Of Responses 

Disability Groups Eligible 

All Disabilities 78 33 72 56 54 78 58 
Physical Disability Only 6 12 16 18 11 
PD, Brain Injury Only 11 42 9 39 25 22 25 
PD, BI, Cognitive Only 6 12 3 6 4 6 

Other Eligibility Requirements 

A number of other eligibility requirements were also stated (Table 13). Most PC-Option 
programs required a physician's order for services. The most common requirement was that 
people be at risk of institutionalization: almost all Medicaid Waiver programs required this. 
Another common requirement was that the family of the consumer be unwilling or unable to 
provide assistance (half the Title XX programs required this). Some programs mandated that the 
recipient have a severe degree of disability (SSI definition), particularly the Medicaid Waiver 
programs. Residence in a specific area was considered a criterion for some programs. Other 
programs specify that the consumer be able to manage his/her own attendant (State programs seem 
particularly concerned with this). Less common criteria included requiring that a person be unable 
to use a specific number of limbs, or be a wheelchair user. 


Appendix B, Page 20 

Table 13: Other Eligibility Requirements 

Funding Source Txuc 'pax-SSBG TM State Other Total 
PC Waiver 
Number of Responses 20 39 24 13 29 12 137 

Percentage Of Responses 

Other Eligibility Requirements 
Risk of Institutionalization 45 92 63 46 66 36 66 
Physician's Orders 80 67 25 23 38 27 48 
Family Unable/Unwilling 15 18 50 23 28 9 25 
Severe Disability 5 36 13 17 18 19 
Specific Geographic Area 28 8 31 17 27 19 
Able to Manage Own Attendant 25 3 8 45 15 
Inability to Use Limbs 5 4 31 0 8 
Wheelchair User 10 4 7 4 
Specific Disability Group 5 10 9 4 
Living Alone 5 4 23 4 

Provider Mode 

Programs utilized one or more types of providers: independent providers (IPs), private 
agency workers, or local government workers (Table 14). The numbers and percentages cited for 
each group include some duplication, because 42% of the programs utilized more than one 
provider mode. Overall, private agency workers were the most common provider type (62%), 
followed by independent providers (49%), and local government workers (44%). State programs 
were most likely to use independent providers (87%), followed by PC-Option programs Most 
Waiver programs and all other programs utilized private agency workers, and these programs, 
along with Title VC programs, were also most likely to utilize local government workers. 


Appendix B, Page 21 

Table 14: Provider Mode 

Funding Source TXIX-TXIX- SSBG TM State Other Total 
PC Waiver 
Number of Responses 20 39 34 21 30 12 156 

Percentage Of Responses 

Provider Type a 
Independent Providers 
Private Agency Workers 
Local Government Workers 
60 
45 
40 
41 
77 
59 
47 
56 
53 
47 
56 
21 
87 
23 
20 
33 
100 
50 
49 
62 
44 

a The numbers and percentages cited for each group include some duplication, because 42% of the 
programs utilized more than one provider mode. 

Attendant Wages and Benefits 

When asked about attendant pay and benefits, some administrators could not provide 
specific data, particularly for private agency workers and local government workers who were 
compensated via a third party (ie. private agency or local government). When the administrator 
gave a wage or benefit range, the lower figure was used. 

Generally, pay was low for most IPs (Table 15); averaging only slightly more than 
minimum wage ($3.35/hour in 1985). Benefits for IPs (social security, unemployment 
compensation, transportation costs, sick leave, health insurance, vacation pay) were either low or 
nonexistent. Overall, an IP received roughly 80% of the wages and one third of the benefits that 
an average agency worker received, and only 78% of the wages and 15% of the benefits an 
average government worker received. The average wage of IPs ranged from $2.25 to $4.61 per 
hour, and the average number of benefits ranged from 0 to 1.2. There were no statistically 
significant differences between funding groups. 

Agency workers received an average of $4.70/hour, with a range of $4.09 to $5.83 per 
hour, and received a number of benefits ranging from 0 to 7. There were no significant differences 


Appendix B, Page 22 

between funding groups. 

Government workers received an average of $4.91/hour, with a range of $3.93 to $5.25 

per hour, and received a number of benefits ranging from 0 to 7. There were no significant 

differences between funding groups. 

Table 15: Average Attendant Wages and Benefits 

Funding Source TXIX-TXIX- SSBG Tiff State Other Total 
PC Waiver 

Average Hourly Wage 

Independent Providers 
(n=64) $3.89 $4.61 $3.26 $3.50 $3.80 $2.25 $3.82 1.16 
Agency Workers 
(n=62) $5.12 $4.60 $4.12 $5.51 $4.77 $4.2 0 $4.70 1.12 
Government Workers 
(n=32) $3.93 $5.25 $4.93 $4.38 $5.00 $4.82 $4.91 .30 

Average # of Benefits 

Independent Providers 
(n=70) 0.8 0.4 1.1 0.0 1.0 0.0 0.8 1.46 
Agency Workers 
(n=89) 3.0 2.5 3.0 2.2 0.9 1.7 2.4 .86 
Government Workers 
(n=41) 5.0 5.4 5.2 5.2 7.0 4.2 5.2 .43 

Regulation of Independent Providers 

Forty-one of the 77 programs which utilized IPs had some specific regulation on hiring 

(Table 16). Title XIX PC-Option programs were most likely to regulate IPs. Overall, the 

regulation was minimal; the most common requirement was that the attendant be over 18. 


Appendix B, Page 23 

Table 16 : Independent Provider Regulation 

Funding Source 
TXIX- TXIX- SSBG TE11 State Other Total 
PC Waiver 
Number of Responses 
9 9 9 2 12 0 41 

Percentage Of Responses 
Independent Provider Regulation 
Attendant Over 18 89 44 78 50 58 66 
Attendant Has Training 33 56 67 100 42 51 
Client Capable of Supervising 44 44 56 67 51 
Consumer Requests IP 67 56 44 50 51 

Circumstances Under Which Family Members May Become Paid Attendants 

Forty-one of the programs surveyed allowed family members to become providers in some 
limited circumstances (Table 17). Six PC-Option programs allowed family members to become 
paid attendants in some circumstances, despite the exclusion of family providers in Medicaid 
regulation. 

Table 17: Regulation On Family Members Providing Paid Attendant Services 

 

Funding SourceTXIX- TXIX- SSBG 1111 State Other Total 
PC Waiver 

Number of Programs Which Allow Family 
Members to Become Paid Providers 6 9 12 0 13 1 41 

Percentage Of Responses 

Under What Conditions Can a Family 
Member Become a Paid Provider? 
If Not at Same Residence 17 11 25 15 100 19 
If Not Legal Guardian 33 44 33 15 26 
If No One Else is Available 33 22 33 15 23 
If No One Else is Capable 33 44 33 15 28 
Other Circumstances 67 67 67 85 74 


Appendix B, Page 24 
The Impact of Provider Mode on Consumer Control and Average Hours of Service Provided 
Independent providers (IPs) are considered the preferred provider mode from an 
independent living perspective, in that consumers have a far greater level of control with IPs. In a 
previous analysis with this data set, programs which utilized IPs were found to be far more likely 
to allow the consumers to train, hire, fire and/or pay their attendants (Litvak, Zukas and Heumann, 
1987). This pattern was also evident among each of the funding groups in the present analysis. 
Overall, there was a significant relationship found between provider type and average hours of 
service; F (5, 68) = 3.87, p < .01. IPs provided the highest average hours of service (25 
hours/week), and government workers provided the lowest (3 hours/week). 
Program Age 
The average age of programs (Table 19) differed significantly between funding groups; F 
(5,144) = 10.59, p < .001. PC-Option programs were an average of 8.4 years old. Title III 
programs were the oldest (12.1 years) and Medicaid Waiver Programs were the newest (2.2 
years). Overall, almost half of the programs surveyed were less than five years old. 
Table 18: Average Program Age 
Funding Source 
TXTX- DCDC- SSBG TM State Other Total 
PC Waiver 
Number of Responses 
19 36 30 20 30 10 145 
Average Number of Years Program Has Existed 
8.4 2.2 10.2 12.1 5.8 10.0 7.3 11. 39** 
** p < .001 
In general, the scope of total services was inversely correlated with program age, i.e. older 
programs offered fewer services; r = -.21, p < .05. Service limits were also inversely correlated 
with program age, i.e. older programs had lower limits; r = -.24, p < .05. Provider mode varied 
with program age; F (5,144) = 3.52, p < .01. Older programs were more likely to utilize private 
agency and government workers, newer programs were more likely to utilize independent 
providers.

Appendix B, Page 25 

Discussion 

The present study reveals some basic patterns among personal assistance programs, but it 
also highlights the need for more specific and detailed research. Funding source was found to 
impact a wide range of variables, i.e. number of clients, expenditures per client, average weekly 
hours of service provided, medical supervision requirements, service availability, service limits, 
eligibility requirements, and attendant training requirements. With other variables, the high degree 
of within group variance overwhelmed the influence of funding source, i.e. program expenditures, 
and total hours of service. In other words, individual programs within a given funding stream 
tended to differ from each other as much as they differed with programs from other funding 
streams on some variables. It is therefore difficult to create a profile of the "average" program 
within a funding source. A few general observations, however, can be made. 

PC-Option programs were among the largest programs surveyed. They had average annual 
expenditures of $32,460,000 per program and served an average of 7,090 people. The average 
cost per hour of assistance was relatively high. They offered a basic core of services, but, in some 
cases, there were important limitations on the types of services provided. Many programs failed to 
offer paramedical services such as catheterization, even though attendants could be trained for these 
services in other programs. Only 35% offered respite services. Most programs limited services to 
less than 40 hours per week. They required medical supervision more frequently and more 
intensively than other funding groups. These programs are clearly intended for poor people with 
disabilities, and as such were the least likely to encourage employment. Of the programs reporting 
financial limits, 83% required income to be below the 1985 poverty level. They were likely to 
include people of all ages and all disabilities. They used independent providers and private agency 
workers with equal frequency. 

Medicaid Waiver programs generally served the smallest number of people, had the 
smallest total budgets, and offered the largest variety of services. They are the newest PAS 
programs, an average of 2.2 years old. These programs were most likely to offer respite services, 
and tended to utilize contract agency providers and/or local government workers. They targeted 
people with the severest disabilities, often targeted specific disabilities, and spent the most per 
person. This is in keeping with the Medicaid Waiver mandate to serve those most at risk of 


) 


Appendix B, Page 26 

institutionalization. They were also more likely to target specific age groups. A subset of these 
programs, the "Katie Beckett" waivers, targeted children with severe disabilities who would 
otherwise be institutionalized. Most Waiver programs specified risk of institutionalization as a 
primary eligibility requirement, and these programs usually required medical supervision. 

Title )0( programs were the least likely to require medical supervision. These programs 
had comparatively high average caseloads and expenditures, and relatively low expenditures per 
client. They provided the greatest total hours of service, but were the least likely to provide 
paramedical services. These were among the oldest programs contacted; an average of 10.2 years 
old. 

Title III programs were the oldest programs (an average of 12.1 years). They served the 
most people and had the highest average cost per hour of service, but spent the least per person and 
provided the least amount service per person, suggesting that their function is to supplement 
existing informal support systems (i.e. family and friends). For many Title III programs, 
personal assistance services constitute a small part of total program expenditures, and 
administrators had difficulty separating PAS expenditures and caseloads from other program 
services. In keeping with provisions of the Older Americans Act, all services were directed to 
people over 65 without income restrictions. These programs were most likely to limit the times 
services were available. 

State programs provided the greatest average number of hours of service per person and 
had the lowest average cost per hour of service. These programs had relatively small caseloads 
and budgets. They usually did not require medical supervision, and were most likely to utilize 
independent providers. State programs were the most likely to encourage employment of 
recipients. These were among the newer programs surveyed (an average of 5.8 years old), and 
often were developed to fill gaps between federal programs. 

The "Other" programs, consisting largely of home health aide programs, provided the 
highest level of paramedical services. They all used private agency workers, and half also used 
local government workers. They also had relatively strict income and asset requirements, but were 
usually open to people of all ages and disabilities. 

Across all funding streams, service providers received low wages and few benefits. In 


Appendix B, Page 27 

relative terms, agency workers received slightly higher wages and substantially more benefits than 
independent providers, and government workers were generally the best paid and received the 
most benefits. It would, therefore, seem logical to conclude that independent providers would be 
the most cost-effective provider mode. Surprisingly, this was not the case: no significant 
relationship was found between provider mode and cost per hour of service. These findings must 
be regarded as tentative, since the cost per hour of service figures used were very general ( i.e. 
total hours of service divided by total program expenditures), and could only be calculated for a 
third of the programs surveyed. Perhaps the administrative costs of maintaining and coordinating a 
pool of independent providers may, in fact, negate much of the apparent cost reduction. Although 
the present research is unable to provide explicit data on the relationship of provider mode and cost-
effectiveness, this clearly is an important policy area which merits closer investigation on a 
program by program basis. 

Preliminary analyses suggest that the different provider types perform essentially the same 
range of services, despite presumed differences in the skill level of providers. This is consistent 
with the position of the independent living movement that the majority of skills necessary for 
attendant services are relatively basic, and can be learned on the job with a sufficiently trained 
consumer. Average weekly hours of service did vary significantly by provider type, i.e. 
independent providers provided the highest average hours of service and government workers 
provided the lowest. Overall, consumers are much more likely to hire, fire, train and pay 
independent providers than other types of providers. These findings suggest that there are good 
reasons to utilize independent providers from a consumer perspective, regardless of the cost-
effectiveness issue. 

Almost 50% of the programs surveyed in 1984 were less than 5 years old, a fact which 
suggests that both the need for PAS and the political awareness of that need had grown 
dramatically in the early 80's. Much of this growth may also be related to the rise in long-term care 
costs; PAS is a cost-effective alternative to nursing homes for many individuals. Most programs 
explicitly state this rationale by requiring that eligible individuals be at risk of institutionalization. 
The other reason for this growth in PAS programs may be the increasing influence of the disability 
movement. It was hypothesized that newer programs would be more influenced by the 
independent living movement and advocacy groups, and that this would translate into more 
responsive and comprehensive programs. A general pattern of findings did emerge from the 
analysis of program age, apart from the obvious relationship between funding source and program 


Appendix B, Page 28 

age (i.e. older funding sources have older programs). Newer programs were more likely to use 
IPs, provide a greater range of services, and have higher service limits. All of these factors could 
be considered positive indications that new programs are responding to some of the concerns 
voiced by the independent living movement. 

The present research indicates that funding source has an impact on programs, particularly 
if the legislation authorizing this funding contains explicit guidelines on eligibility or other key 
program features. However, many crucial policy decisions (about how the program will be 
structured, what services will be provided, when they will be provided, and who will receive 
them) are probably made in response to the political context of the individual state. Variables such 
as the state tax base, the strength and position of state political groups (e.g. the nursing home 
lobby, the independent living movement and other disability and advocacy groups, etc.), state 
demographics (e.g. rural and metropolitan populations, the number of disabled and elderly 
persons, ethnic composition, etc.), are probably more important than funding source in shaping 
individual program features. An explicit analysis of the historical and political context of individual 
programs is probably the most effective way to understand these programs. This would require a 
different methodology in which more open-ended questions could be asked of a number of 
informants. 

Clearly the next step in this research area is identification and in-depth study of individual 
programs of particular theoretical interest. 2 To move beyond the general outlines provided here, a 
greater volume of information from a variety of perspectives is needed. Site visits should be 
conducted to collect all available regulatory data, caseload information and financial summaries 
(although lack of accurate and detailed management information systems may present the same 
methodological problems as in the present study). Future research will also need to be more 
comprehensive in terms of people interviewed. In this survey, reliance on a single administrator 
and a single measurement was an economically necessary procedure. However, it failed to address 
key program factors (e.g. availability, eligibility, scope and frequency of services) from the 
perspective of consumers, advocates, and providers. Representatives of each of the involved 
groups will need to be identified and contacted in future research projects. Finally, the measures 
will need to be more open-ended, so that unique features of individual programs can be identified. 

2 The World Institute on Disability has, in fact, been funded by the National Institute on Disability Rehabilitation Research 
(NIDR) to conduct case studies on representative programs from each funding source, and by the Department of Health and Human 
Services to conduct site visits to select Medicaid PC-Option programs. 


Appendix B, Page 29 

This study does not single out programs which merit intensive study, but it does provide 
a starting point by identifying important variables. The influence of provider mode on consumer 
control and cost-effectiveness is clearly an important policy issue, and programs which utilize 
different provider modes should be compared. The age of the population served also appears to be 
a key variable. Programs targeting working adults, elderly people, and people of all ages could be 
contrasted in future research. The independent living score may also be a good way to select 
programs which apparently respond to consumer needs, but the actual impact of these programs on 
the independence of consumers will need to be examined on a case by case basis. More specific 
indices such as average hours of service provided per person or expenditures per person may also 
be appropriate in selecting programs for further study. 

The expanding elderly population, the rising costs of institutional care, and the growing 
demand for services which maximize independence, all assure a growing interest in personal 
assistance services. The identification and analysis of programs which adequately address the 
needs of consumers in a cost-effective manner is a necessary evolution of this research. 


WORLD 
INSTITUTE 
ON DISABILITY 

1720 Oregon Street, Suite 4 • Berkeley, California 94703 • (415) 486-8314 

STATE 
TITLE OF PROGRAM 
CASE NUMBER 
DATE 
INTERVIEWER 
RESPONDENT 
TITLE 
AGENCY NAME 
ADDRESS 


TELEPHONE ( ) 

FOR INTERVIEWER COMMENTS: 

a public policy center dedicated to the elimination of handicappism through the promotion 
of independence, equity of opportunity and full participation of people with disabilities 


-2


A. HISTORY 
Al. Is this a medicaid waiver program? 
Yes 1 
No 2 
D/K 8 
iF NO, SKIP TO A3 
A2. When did HCFA approve the waiver? 
SKIP TO AS 
SKIP TO HERE 

A3. What is the legislation which established this 
program? 

A4. When was the legislation passed? 

SKIP TO HERE 

A5. When was the program implemented? 
A6. What is the mission or purpose of the program? 


Yes No D/K 

1. Prevent institutionalization 1 2 8 
2. Contain costs associated with long-term 
care 1 2 8 
3. Allow people to work and still receive 
financial aid for attendant services 1 2 8 
4. Enable people to stay in their own home 
and community 1 2 8 
5. Financial aid to employer or employable ... 1 2 8 
6. Other 
B. SERVICES 
Bl. Which of the following services are provided by the program? 
(Circle all that apply.) 

Yes No D/K 
PERSONAL CARE 

1. Respiration 1 2 8 
2. Bowel and Bladder Care 1 2 8 
3. Feeding 1 2 8 

-3


Yes No D/K 

4. Bathing 1 2 8 

5. Dressing 1 2 8 

6. Menstrual Care 1 2 8 

7. Ambulation .1 2 8 

8. Moving into and out of bed 1 2 8 

9. Oral Hygiene and grooming 1 2 8 

10. Skin Care 1 2 8 

11. Care and assistance with prosthesis 1 2 8 

12. Catheterization 1 2 8 

13. Injections 1 2 8 

14. Medication 1 2 8 

15. Range of Motion 1 2 8 

16. Other 

DOMESTIC SERVICES 
Yes No D/K 

1. Light Cleaning 1 2 8 

2. Heavy Cleaning 1 2 8 

3. Laundry 1 2 8 

4. Shopping 1 2 8 

5. Meal preparation 1 2 8 

6. Meal cleanup and menus 1 2 8 

7. Chore Services 1 2 8 

8. Repairs, Maintenance, Renovation 1 2 8 

9. Other 

RELATED SERVICES 
Yes No D/K 

1. Transportation 1 2 8 

2. Protective Supervision 1 2 8 

3. Escort 1 2 8 

4. Teaching and demonstration 1 2 8 

5. Respite Care 1 2 8 

6. Telephone Reassurance 1 2 8 

7. Readers 1 2 8 

8. Interpreters for Deaf 1 2 8 

9. Home Delivered Meals 1 2 8 

10. Case Management 1 2 8 

11. Other 


-4


B2. Under this program what is the maximum limit on the: 

1. Number of visits allowed per week 
2. Number of hours of care allowed per week 
3. Monthly financial allowance 
4. Total cannot exceed cost of being in 
nursing home 
(specify amount) 

5. Other 
6. Program has no maximum limits (circle) 
B3. During what hours is attendant service available? 

Yes No D/K 

1. 24 hours per day 1 2 8 
2. 9-5 only 1 2 8 
3. Other 
(specify) 
B4. During what days is attendant care service available? 

Yes No D/K 

1. Every day 1 2 8 
2. Weekdays only 1 2 8 
3. Other 
C. ELIGIBILITY CRITERIA 
Cl. Is eligibility for this program based on criteria 
which are: 

Yes No D/K 

 

1. Statewide 1 2 8 


2. Countywide 1 2 8 
3. Other 

C2. What age groups are eligible for the program? IF RESPONDENT 
CANNOT BREAK DOWN FIGURES IN THIS WAY, USE THEIR CATEGORIES 
AND RECORD ON DOTTED LINE.) 

Yes No D/K 

1. Less than 18 years old 1 2 8 
2. 18-64 years old 1 2 8 
3. 65 years old and over 1 28 
C3. Which of the following are criteria for eligibility in this program? 

(Circle all that apply.) 
Yes No D/K 
1. Employed 
2. Unemployed 
3. Vocational Rehabilitation clients 
4. SS *pients or eligibles 
5. SSDI recipients or eligibles 
6. Medicaid recipients or eligibles 
7. AFDC recipients 
1 
1 
1 
1 
1 
1 
1 
2 
2 
2 
2 
2 
2 
2 
8 
8 
8 
8 
8 
8 
8 

IF NOT EMPLOYED, 
SKIP TO QC5. 

IF EMPLOYED, 

C4. Is there a minimum number of hours per week a person must be employed 
to be program eligible and if so, what is it? 

1. Minimum Hours = 
2. No Minimum (circle) 
SKIP TO HERE 

C5. What is the maximum yearly income a person may have and still be eligible? 

N/A (circle) 

IF N/A, SKIP TO C7 

C6. What expenses, if any, can be excluded from a person's income when 
determining eligibility? 

Yes No D/K 

1. Taxes 1 2 8 
2. FICA 1 2 8 

-6


Yes No D/K 
3. Anything Mandatory for employment (e.g. 
uniforms, union dues, pension, lunches, 
transportation) 1 2 8 
4. Impairment-related work expenses 
5. Day Care Costs 
1 
1 
2 
2 
8 
8 
6. Typical medical expenses 1 2 8 
7. Health insurance payments 1 2 8 
8. Other 

SKIP TO HERE 

C7. What are the maximum assets a person may have and still be eligible? 

N/A (circle) 

IF N/A, SKIP TO C9 

C8. What property can be excluded from a person's assets when determining eligibility? 

Yes No D/K 

1.Home 1 2 8 
2. Personal items in the home 1 2 8 
3.Car 1 2 8 
4. Burial Insurance 1 2 8 
5. Life Insurance 1 2 8 
6. Other 
C9. Is there a graduated shared cost formula? 

Yes 1 
No 2 
D/K 8 

C10. Are any of the following criteria for eligibility in this program? 
(Circle all that apply) 

Yes No D/K 

1. At risk of institutionalization 1 2 8 
2. Wheelchair user 1 2 8 
3. Able to manage own attendant 1 2 8 
4. Currently living in nursing home 1 2 8 
5. Living alone 1 2 8 

Yes No D/K

6. Family members unable or unwilling to do 
attendant care 1 2 8 
7. Physician's orders 1 2 8 
8. Resident in certain geographic area 1 2 8 
Specify 
9. Severely disabled according to Social 
Security Definition 1 2 8 
10. Member of specific disability group • • • . 1 2 8 
Specify group 
11. Inability to use certain number of limbs ... 1 2 8 
Specify # 
12. Other 
Cll. Was every applicant who met the eligibility criteria served in FY 1984? 

Yes 1 
No 2 
D/K 8 


IF YES OR D/K, 
SKIP TO QC13 

C12. How many people were on the waiting list in FY 1984? 

SKIP TO HERE 

C13. How many people applied for services, but were considered ineligible in 
FY 1984? 

D. CARE PROVIDERS 
DI. Which of the following types of attendant care providers are there under 
" this program? 
Yes No D/K 

1. Self-Employed Individuals 1 2 8 
(includes family members) 
2. Contract Agencies 1 2 8 
3. Local Government Unit Staff 1 2 8 
4. Other 
(specify) 

IF SELF-EMPLOYED, CONTINUE 
IF CONTRACT AGENCY, 
SKIP TO 010 
IF LOCAL GOVERNMENT UNIT 
SKIP TO D 17 


-8


D2. Are there specific regulations or guidelines relative to receiving attendant care 
from a self-employed individual? 

Yes 1 
No 2 
D/K 8 

IF NO OR D/K 
SKIP TO D5 

IF YES, 

D3. What are they? 
1. Attendant must receive some type 
of training 
2. Attendant must be 18 years old or older ... 
3. Consumer has to be able to supervise 
attendant 
4. Consumer requests an individual provider... 
Yes 
1 
1 
1 
1 
No 
2 
2 
2 
2 
D/K 
8 
8 
8 
8 
5. Other 

D4. Under what circumstances, if any, can a relative be paid for 
attendant care services? 

Yes No D/K 

1. Does not reside in same house if related 
by blood (includes spouse) 1 2 8 
2. Is not the family member/spouse legally 
responsible for the disabled person 1 2 8 
3. Is prevented from working outside the home 
because no other attendant available 1 2 8 
4. Is prevented from working outside the home 
because no one else capable of caring for 
disabled individual 1 2 8 
5. Other 
SKIP TO HERE 

D5. What is the hourly wage for self-employed individual providers? 
$ 


-9


D6. What benefits do self-employed individual providers receive? 

Yes No Varies D/K 

1. Vacation Pay 1 2 3 8 
2. Sick leave 1 2 3 8 
3. Health Insurance 1 2 3 8 
4. Worker's Compensation 1 2 3 8 
5. Social Security 1 2 3 8 
6. Unemployment Compensation 1 2 3 8 
7. Transportation Costs 1 2 3 8 
D7. What skill level is required for the people who provide direct attendant 
services? 

Yes No D/K 

1. Trained by client/consumer 1 2 8 
2. LPN 1 2 8 
3. Home Health Aide 1 2 8 
4. Graduate of agency training program • • • • 1 2 8 
5. Other 
(specify) 
D8. Who hires and fires the attendant? 
Yes No D/K

 

1. Consumer1 2 8 


2. Government Agency1 2 8 


3. Contractor1 2 8 
D9. Who pays the attendant? 

Yes No D/K

 

1. Consumer1 2 8 


2. Government Agency1 2 8 


3. Contractor1 2 8 
IF ONLY SELF-EMPLOYED ARE 
PROVIDERS, SKIP TO El 
IF CONTRACT AGENCIES ARE 
PROVIDERS, CONTINUE 


IF LOCAL GOVERNMENT UNITS 
ARE PROVIDERS, SKIP TO D17 

SKIP TO HERE FOR CONTRACT AGENCIES 

DIO. Which of the following types of contract agencies are there under this program? 

Yes No D/K 

1. Certified Home Health Agencies 1 2 8 


2. Private, non-profit1 2 8 


3. Private for profit1 2 8 


4. Local Government Units1 2 8 

-10


5. Other 
D11. What is the average hourly reimbursement you pay to contract agencies? 

D12. What is the average hourly pay range of the people who provide direct attendant 
care? 

D13. What benefits do contract agency attendants receive? 

Yes No Varies D/K 

1. Vacation Pay . 1 2 3 8 
2. Sick leave 1 2 3 8 
3. Health Insurance 1 2 3 8 
4. Worker's Compensation 1 2 3 8 
5. Social Security 1 2 3 8 
6. Unemployment Compensation . 1 2 3 8 
7. Transportation Costs 1 2 3 8 
D14. What skill level is required for contract agency attendants? 

Yes No D/K 

1. Trained by client/consumer 1 2 8 
2.LPN 1 2 8 
3. Home Health Aide 1 2 8 
4. Graduate of agency training program • • • • 1 2 8 
5. Other 
(specify) 
D15. Who hires and fires the attendant? 

Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 

D16. Who pays the attendant? 

Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 
IF LOCAL GOVERNMENT UNITS 
NOT PROVIDERS, 
SKIP TO El 

SKIP TO HERE FOR LOCAL GOVERNMENT EMPLOYEES 
D17. What is the hourly wage for attendants who are government employees? 


D18. What benefits do goverment employed attendants receive? 
Yes No Varies D/K 

1. Vacation Pay . 1 2 3 8 
2. Sick leave 1 2 3 8 
3. Health Insurance 1 2 3 8 
4. Worker's Compensation 1 2 3 8 
5. S 'al Security 1 2 3 8 
6. Unemployment Compensation . 1 2 3 8 
7. Transportation Costs 1 2 3 8 

D19. What skill level is required for goverment employees who provide direct attendant 
services? 
Yes No D/K 

1. Trained by client/consumer 1 2 8 
2. LPN 1 28 
3. Home Health Aide 1 2 8 
4. Graduate of agency training program .. • . 1 2 8 
5. Other 
(specify) 
D20. Who hires and fires the attendant? 
Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 
nn. Who pays the attendant? 

Yes No D/K 

1. Consumer 1 2 8 
2. Government Agency 1 2 8 
3. Contractor 1 2 8 

E. ADMINISTRATION 
El. Which of the following are the basis for determining the hours and types of services 
to be provided to each recipient? 
Yes No D/K 
1. Physician's recommendation 
2. Functional ability (ADLs) 
3. Accessibility of environment 
4. Plan of care less costly than 
institutionalization 
5. ICF eligible 
6. S rvices Needed 
1 
1 
1 
1 
1 
1 
2 
2 
2 
2 
2 
2 
8 
8 
8 
8 
8 
8 
7. Other 

E2. Who makes the final decision on hours and types of services provided? 

Yes No D/K 

1. Case Management Agency Assessment 
Team 1 2 8 
2. Program Director 1 2 8 
3. Independent Living Program 1 2 8 
4. Vocational Rehabilitation Couselor 1 2 8 
5. Other 
E3. Is medical supervision (nurse, physican or other licensed practitioner) required for 
any of the services? 

Yes No D/K 

1. For all services 1 2 8 
2. Some services 1 2 8 
(specify) 

3. None 1 2 8 
IF NONE, SKIP TO F1 

E4. How often is this supervision required? 
Yes No D/K 

1. Once a month or more 1 2 8 
2. Once every 2 months 1 2 8 
3. Each quarter 1 2 8 
4. Once every 6 months 1 2 8 
5. Once a year 1 2 8 

13


SKIP TO HERE 

F. CLIENTELE 
Fl. For FY 1984 or the latest year figures available FY (specify), 
what is the unduplicated count of recipients of the following: (REFER TO BI 
FOR DEFINITIONS) 

1. Personal Care Services 
2. Domestic Services 
3. Related Services 
4. All Attendant Care Services 
5. Total Program (includes attendant care plus 
N/A 

FL Approximately what percentage of the program's clientele in FY 1984 
or FY (specify) was: IF RESPONDENT CAN'T BREAK DOWN 
FIGURES INTO THESE AGE CATEGORIES, USE THEIR CATEGORIES AND 
RECORD ON DOTTED LINE 

1. Under 18 years of age 
2. 18-64 years old 
3. 65-74 years old 
4. 75 and older % N/A 
F3. What percentage of the program's clientele in FY 1984 or FY 
was: (specify) 

1. male 
2. female % N/A 
F4. What percent age of the program's clientele for FY 1984 or FY was: 
(specify) 

1. Black 
2. Hispanic 
3. Native American 
4. Asian 
5. White % N/A 

F5. What was the average income of the program's clients in FY 1984 or 
FY (specify)? $ N/A 
F6. What was the percentage of clients receiving income from the following in FY 1984 
or FY ? 
(specify) 
1. Social Security Surviror's Benefits % 
2. Social Security Retirement Benefits % 
3. SSI % 
4. SSDI • . % 
5. Veteran's Benefits % 
6. Private Retirement % 
7. Earned income % 
8. Family % 
9. AFDC % 
10. Other % N/A 
(specify) 
F7. What was the average number of hours of attendant care per week that people 
received? 
N/A 
F8. How many people in FY 1984 did not enter institutions or left institutions or nursing 
homes as a result of this program? 
N/A 
F9. What is your estimate of the number of people per year who could leave institutions 
or nursing homes in your state, if attendant care programs were expanded? 
N/A 
G. EXPENDITURES 
Gl. For FY 1984 or the latest year figures are available (FY ) (specify), what was 
the total dollar amount or percent spent for: (REFER TO BI FOR DEFINITIONS) 
1. Personal Care Services: 
2. Domestic Services: $ %

3. Related Services: $ 
4. All attendant care services: $ 
5. The total program (includes 
attendant care plus $ 
) 
G2. For FY 1984 or FY (specify) which of the following are the sources of 
funds for the program and the dollar amounts that come from each source? 
A. FEDERAL SHARE ONLY (Does not include match) 
1. Vocational Rehabilitation 
a) Title VII A $ % 
b) Title VII B $ % 
2. Title XVIII (Medicare) $ % 
3. Title XIX (Medicaid) $ % 
4. Title XIX Waiver $ % 
5. Title XX (Social Services Block Grant) • • • $ % 
6. Title III $ % 
7. Other Federal: (specify) 
%
% 
B. NON-FEDERAL (Including NON-FEDERAL match) 
1. State Funds $ 
2. County Funds $ 
3. Municipal Funds $ 
4. Private Funds $ 
5. Client Contributions $ 
6. Other Non-Federal: (specify) 
C. TOTAL FEDERAL AND NON-FEDERAL 
(SHOULD BE SAME AS QG1 (4) ABOVE) $ %

G3. For FY 1984 or the latest year figures are avaiable FY (specify), 
what are the number of hours of service delivery for: (REFER TO BI, for 
definitions) (IF AGENCY USES DIFFERENT UNIT MEASURE CONVERT TO HOURS 
AS ACCURATELY AS POSSIBLE) 
1. All attendant care services: hrs. 
2. Total program (including 
hrs. 
G4. Have any studies been done on the cost effectiveness of this program? 
Yes 1 
No 2 
D/K 8 
G5. Could you send us a copy? 
Yes 1 
No 2 
D/K 8 
(IF NO or D/K, 
SKIP TO G6) 
(IF YES, GIVE 
WHYS ADDRESS) 
SKIP TO HERE 
G6. Have any studies been done in your state on the extent of need for attendant care 
services? 
Yes 1 
No 2 
D/K 8 
G7. Could you send us a copy? 
Yes 1 
No 2 
D/K 8 
(IF NO OR D/K, 
SKIP TO HO 
(IF YET, GIVE WID 
ADDRESS)

-17


SKIP TO HERE 

H. EVALUATION 
HI. What are the program's strong points? 
H2. What are the program's weak points? 

H3. What changes in the program are being contemplated? 

(IF AGENCY ADMINISTERS 
ANOTHER PROGRAM, PROCEED 
TO NEW FORM, OTHERWISE) 

H4. Do you know of any other attendant programs in your state, in particular waiver 
programs? 

Thank you very much for answering our questions. 

WORLD INSTITUTE ON DISABILITY 
1720 OREGON STREET 
BERKELEY, CALIFORNIA 94703 
(415) 486-8314 
ATTN: DR. SIMI LITVAK 



Cla. What rare the disabilities of the people who are eligible to receive 
services from this program? 


Yes No D/K 


1. Physical Disability 1 2 8 


2. Brain Injury 1 2 8 


3. Mental Illness 1 2 8 


4. Mental Retardation 1 2 8 


5. MR, CP,Autism, Epilepsy 1 2 8 


6. DD (broadest definition) 1 2 8 


7. Other 


Fla. What are the disabilities of the people who receive services from 
this program? 


Yes No D/K 


1. Physical Disability 1 2 8 


2. Brain Injury 1 2 8 


3. Mental Illness 1 2 8 


4. Mental Retardation 1 2 8 


5. MR, CP, Autism, Epilepsy 1 2 8 


6. DD (broadest definition) 1 2 8 


7. Other 



APPENDIX C: 


CHARTBOOK OF PROGRAM COMPARISONS 
BY FUNDING SOURCE ON 1988 NATIONAL 
SURVEY DATA 



Appendix C, Page 2 

Table of Contents 

Section 

Introduction 

Hypotheses 5 

Methodology 

Questionnaire Design 6 
Survey Procedure 6 
Response Rates 7 
Reliability 7 
Validity 8 

Findings 


I. Programs Surveyed: Location and Funding Source10 
IL Program Expenditures12 


III. Program Caseloads14 
IV. Total Hours of Service Provided16 
V. Expenditures Per Recipient17 
VI. Hours of PAS Per Recipient18 
VII. Income Eligibility Requirements19 
VIII. Age Eligibility Requirements21 
IX. Services Offered 22 
X. Service Availability24 
XI. Service Limits24 
XII. Medical Supervision Requirements27 
XIII. Provider Types Utilized 27 
XIV. Provider Pay and Benefits29 
XV. Consumer Control Issues31 
XVI. Summary of Funding Sources32 
Questionnaires Used 35 


Appendix C, Page 3 

List of Tables 
Table Page 

10

1: Programs Surveyed by Location and Funding Source Group 
2 : 1988 PAS Expenditure Level Per Program and Average 
Expenditures Per Program by Funding Source Group 
13 

3: 1988 Caseload Level and Average Caseloads Per Program 
by Funding Source Group 14 
4: Average Total Hours of PAS Provided and Hour Level 
by Funding Source Group 16 
5: Average Annual Expenditures Per Recipient by Funding 
Source Group 17 
6: Average Hours of PAS Per Week Per Recipient by 
Funding Source Group 18 
7: Income Eligibility Requirements by Funding Source Group 20 
8: Age Groups Eligible by Funding Source Group 21 
9: Percentage of Programs Offering Assistance With Personal 
Assistance Tasks by Funding Source Group 22 
10: Percentage of Programs Offering Assistance With Paramedical 
Tasks and Average Number of Paramedical Tasks Provided 
by Funding Source Group 23 
11: Days and Times Service is Available by Funding Source Group 24 
12: Maximum Hours Allowed Per Week Per Recipient and Maximum 
Expenditures Per Recipient by Funding Source Group 25 
13: Percentage of Programs Which Require Medical Supervision and 
Changes in Medical Supervision Requirements by Funding 
Source Group 27 
14: Average Hourly Attendant Wage by Funding Source Group 29 
15: Average Number of Attendant Benefits by Funding Source 30 
16: Degree of Consumer Control for Programs Which Utilize 
Independent Providers by Funding Source 
31 


Appendix C, Page 4 

List of Figures 

Figure Page 

 

1: Programs Surveyed by Funding Source Group 12 
2 : 1988 PAS Expenditure Level Per Program Per Program 


by Funding Source Group

13 

3: 1988 PAS Average Expenditures Per Program by 


14

Funding Source Group

4: 1988 Caseload Level Per Program by Funding 


Source Group15 


5: Average 1988 Program Caseload by Funding Source Group15 
6: Annual Hours of Service Level by Funding Source Group 16 
7: Average Total Hours of Service Provided by Funding 


Source Group 17 

8: Average Annual Expenditures Per Recipient by Funding 


Source Group 18 

9: Average Hours of PAS Per Week Per Recipient by Funding 


Source Group19 


10: Income Eligibility Requirements20 
11: Age Groups Eligible21 
12: Maximum Hours Allowed Per Week Per Recipient26 
13: Maximum Expenditure Limit Per Month Per Recipient 26 
14: Total Number of Programs Using Each Provider Type 28 
15: Percentage of Programs Utilizing Provider Types by 


Funding Source28 


16: Hourly Attendant Wage by Provider Type and Wage Level 30 
17: Number of Benefits Received by Provider Type 31 

Appendix C, Page 5 

Introduction 

The following data is derived from the World Institute on Disability's (WID) second 
nationwide survey of government-funded programs for people of all ages with disabilities which 
offer personal maintenance and/or household/domestic service on a long-term basis or short-term 
(respite) basis. The survey was mailed in the spring of 1989, and state administrators of Personal 
Assistance Service (PAS) Programs were asked to provide information for calendar or fiscal year 
1988. This document is intended as a summary text of major 1988 program features of PAS 
programs as a whole and by primary funding source. It provides brief descriptions of major 
findings in key program areas, followed by detailed tables and figures. 

Hypotheses 

WID's first 1984 survey and resulting monograph, Attending to America: Personal 
Assistance for Independent Living (Litvak, Heumann and Zukas, 1987), provided an overview of 
personal assistance programs throughout the United States. It also highlighted the lack of a 
comprehensive federal policy and integrated funding for personal assistance services (PAS), which 
led to a basic research issue: how do the various funding sources (and their concomitant 
regulation) affect the design of these programs? The present study addresses this issue by 
grouping the 132 programs surveyed into six groups, based on their primary source of federal 
funding (although all programs supplement the federal funds with state revenues). These groups 
are then compared on the critical program variables, in order to answer the following research 
questions: 

1) How does funding source impact the size of the PAS program, in terms of program 
expenditures, caseloads, and hours of service provided? 
2) Does funding source effect the allocation of services? Is there a difference in hours of 
service or dollars expended per consumer? 
3) Do eligibility requirements vary by funding source? 
4) Do different funding sources offer different types of services? 
5) Are the days and times services are available impacted by funding source? 
6) Are some funding source groups more likely than others to limit the amount of service a 
consumer may receive? Is there a difference in how much the programs limit service? 
7) What is the relation of funding source and medical supervision requirements? 
8) Does funding source influence the type of providers used, or the pay and benefits 
providers receive? 
9) Does funding source relate to the amount of consumer control built into program 
regulations? 



Appendix C, Page 6 

Methodology 

Questionnaire Design 

A mail survey questionnaire was developed which was similar, but not identical, to that 
used in WID's nationwide 1985 survey of PAS programs (see end of report for copies of each 
questionnaire). Questionnaires in both 1985 and 1988 focused primarily on basic descriptive data, 

i.e. number of recipients served, program expenditures, hours of service provided, type of service 
provided, program regulations. There were slight differences in the content of the two surveys. 
Some of the items used in 1985 were qualified to make finer distinctions, e.g., provider types were 
were more specifically categorized, additional services were listed, hours of service were broken 
down by type. Other items which had very low response rates were dropped from the survey 
entirely, e.g., consumer control options for agency or government providers, demographic 
breakdowns for populations served. A somewhat longer questionnaire was developed in 1989 for 
programs not previously surveyed, in order to obtain additional data from these programs. All 
program administrators were also asked if there had been any substantial change with regard to 
various program features since 1985. Questionnaire items were pre-tested with the 16 programs 
included in the case studies done by Litvak et. al.(1990). The pre-test of the questionnaire was 
completed in December of 1988, and the final draft of the questionnaire was ready by January of 
1989. 
Survey Procedure 

The mailing of the questionnaire was completed in February of 1989. In order to maximize 
the return rate, additional copies of the questionnaires and follow-up letters were mailed, and 
reminder phone calls were made throughout the remainder of 1989 and into 1990. An effort was 
made to get surveys from each program funded by the Medicaid Personal Care Option. Several 
types of programs were not included in this (or the 1984) survey. Protective service programs 
(those aimed at preventing abuse or neglect of adults and children) were only included if these 
programs served people on a long-term basis. Programs targeted exclusively for people with 
mental illness or mental retardation were not included. Temporary services for people who are 
acutely ill or for those in transition from the hospital, nursing home or institution to the community 
were also not included. In addition, shared attendant programs in congregate living arrangements 
were not included. The PAS programs which were contacted came from three different sources: 

1) The 157 programs which were surveyed by WID in 1985. 

2) 19 programs contacted by WID in 1985 which were either unwilling or unable to 
respond at that time. 


Appendix C, Page 7 

3) A list of 58 Medicaid Waiver programs for children, disabled, and elderly received from 
the National Association of Developmental Disability Councils. 

Response Rate 

After two mailings and six months of follow-up phone calls, 132 questionnaires were 
received (see end of Appendix D for a complete list of 1984 and 1988 questionnaires). Of these, 
26 (20%) were from programs not previously contacted, and 106 (80%) were from programs WID 
had interviewed in 1985. Several of the questionnaires received represented 2 or more programs 
interviewed separately in 1985, so a total of 117 programs interviewed in 1985 were accounted for 
in the 1989 survey. This constitutes a 75% return rate for the PAS programs contacted in 1984. 

Despite the extensive follow-up procedures used, there is no definitive account as to why 
25% of the programs responding in 1985 failed to respond in 1989. However, the reasons 
identified for some of these programs are probably representative. During the follow-up phone 
calls, one program administrator interviewed in 1985 simply refused to complete the 1989 survey, 
and it is likely that some other administrators also decided not to invest the time required to 
complete our questionnaire. Twelve other programs were found to be completely defunct or to no 
longer offer PAS. 

Reliability 

The survey is intended to gather specific information based primarily on objective, written 
data from program regulations and annual budgets and reports. However, state management 
information systems (MIS) varied tremendously in level of sophistication, methods of collecting 
and categorizing data, and the types of data collected. Many Title III programs, for example, 
include a wide array of services unrelated to PAS (e.g. home-delivered meals and adult day care), 
but keep records only on total units of service provided in each county. The caseloads for these 
programs were therefore generally inflated, and many cases had to be dropped from the analyses. 

The low response rate on particular items suggests that the data requested is not easily 
placed into the stated categories. For example, there was a high percentage of missing data on 
consumer income eligibility requirements. This may be due to the variety of income and asset 
deduction allowances in the programs which made a single figure difficult to derive. 

Despite the objective nature of the data requested, the reliance on the knowledge of a single 
administrator may also limit reliability. In some cases, the administrator was new to the program 


Appendix C, Page 8 

or position, or he/she had little to do with particular aspects of the program (e.g. assessments). 
When there appeared to be major gaps in questionnaire responses, researchers attempted to contact 
other program representatives to supplement or verify the data provided. For the most part, 
however, the data administrators provided was simply recorded as it was presented. 

The expenditure, hour, and caseload data has specific limitations. Whenever possible, this 
data was recorded for fiscal or calendar year 1988, but in some cases the programs could only 
provide figures from fiscal or calendar 1987 or 1989 data. No attempt was made to convert these 
figures to 1988 levels using the consumer price index or other means. 

Validity 

The key validity issue is whether the concepts and definitions used in this study are 
sufficiently clear and precise. The definition of what constitutes a PAS program, and how this 
determination is made, is of central importance. For example, distinguishing Medicaid home 
health programs which target people who are acutely ill and in need of significant amounts of 
medical services on an intermittent basis from those programs which offer PAS on a long-term 
basis was quite difficult (at least one program surveyed in 1984 and analyzed with that data set was 
discovered to be a short-term home health program when contacted again in 1988). The 
identification and inclusion of such programs were often based on the administrator's judgement as 
to whether his/her program actually fit the stated criteria. The opposite problem occurred with 
some program administrators who had a very narrow concept of attendant services (i.e. programs 
for disabled working age people who are employed or employable). In these cases, the 
administrator had to be convinced that if, for example, the program only served older people for a 
few hours a week on a regular basis, it was in fact an attendant service program. 

The validity of the funding source groups is not certain. Programs were originally grouped 
by primary federal funding source into twelve categories, but in order to have groups large enough 
for meaningful statistical analysis, these were collapsed into six categories. The "Other" category 
in particular became a catch-all for programs that could not be placed into the other five categories. 
Analyses of Variance (ANOVAs) on most variables consistently showed enormous within group 
variance, which indicates that program funding source in general was much less important than the 
individual political, economic and administrative context within the states (a premise borne out by 
the subsequent site visits conducted by WED). 

These categories appeared even more tenuous when 1984 and 1988 surveys were 
compared. For example, nine programs had apparently switched funding source between 1984 
and 1988, and these programs could not be included in the 1984 to 1988 comparisons by funding 


Appendix C, Page 9 

source group. In three of these cases, the administrators no longer reported Title XX funding as 
distinct from state funds, in another case TXX funds were not distinguished in 1984. It is possible 
that other programs in this data set may be incorrectly categorized, or that the categories themselves 
are not sufficiently defined. 

Eight questionnaires were received which seemed to indicate that the state had consolidated 
a number of programs which had been interviewed separately in 1984. When WED visited one of 
these states, the researchers found that although the state continued to have two distinct programs, 
only one questionnaire had been filled out because the same department administered both of the 
programs. Other questionnaires counted in these analyses as a single program may also be 
aggregate reports of several programs. 

Given these data limitations, the following analyses must be viewed primarily as 
summaries of general trends. The study strongly suggests that funding source category by itself is 
not a valid predictor of specific program features. 


Appendix C, Page 10 

I. Programs Surveyed: Location and Funding Source 
One hundred and thirty two programs from 49 states responded to the survey in 1988 
(Table 1). These programs were grouped into six major categories: 1) TXIX-PC: programs 
funded exclusively by the Medicaid Personal Care Option, or those funded primarily by the Title 
XIX PC-Option, but have other sources of federal funding as well (n=24). 2) Waiver: programs 
funded by Title XIX waivers (n=31). 3) SSBG; programs funded by Title XX of the Social 
Security Act or the Social Services Block Grant (n=24). 4) THE; programs funded by Title III of 
the Older Americans Act (n=13). 5) State: programs funded exclusively by state resources; 
programs which provide state supplements for PAS directly to Social Security Insurance (SSI) 
recipients; or programs that are funded by state resources, with some Title VII funds (n=27). 6) 
Other: programs funded by more than one source of non-Medicaid federal funding (primarily Title 
III and SSBG), programs funded by Title XIX home health funds, or programs are funded by 
Title XD( home health funds and other federal funds (n=13). The number of programs in each 
funding group are shown in Figure 1. 

Table 1: Programs Surveyed by Location and Funding Source Group 

Funding Source TXIX-TXIX- SSBG 1111 State Other Total 
PC Waiver 

State 

AK 
AL 
AR 
AZ 
CA 
1 
1 
1 
2 1 1 
2 
1 
1 1 
1 
3 
2 
2 
4 
CO 
CT 
DE 
FL 
GA 
1 
1 
1 
2 
1 
1 
1 
1 
2 
1 
2 
1 
4 
5 
0 
5 
1 
HI 
ID 
IL 
IN 
IA 
1 
1 
2 
1 
1 
1 1 
1 
1 
2 
1 
3 
2 
2 
3 
3 

KS 112 
KY2 13 
LA 0 
ME 112 
MD 11114 


Appendix C, Page 11 

Table 1: Programs Surveyed by Location and Funding Source Group, continued 

Funding Source TXIXPC 
TXIXWaiver 
SSBG TM State Other Total 
State 
MA 
MI 
MN 
MS 
MO 
1 
1 
1 
1 
1 
1 1 
1 
1 
1 
1 
1 
3 
2 
4 
1 
2 
MT 
NE 
NV 
NH 
NJ 
1 
1 
1 
1 
1 
2 
2 
1 1 
1 
1 
1 
3 
4 
2 
3 
NM 
NY 
NC 
ND 
OH 
2 
1 
2 
1 
1 
1 
1 
1 
1 1 
3 
2 
3 
1 
3 
OK 
OR 
PA 
RI 
SC 
1 
1 
1 
1 
1 
2 
1 
1 
1 1 
1 1 
3 
1 
4 
3 
2 
SD 
TN 
TX 
UT 
VT 
1 
1 
1 
1 
1 
2 
2 
1 
1 
1 
2 
1 
3 
3 
1 
6 
4 
4 
VA 
WA 
WV 
WI 
WY 
DC 
1 
1 
1 
1 
1 
1 
1 
1 1 
2 
1 1 
1 
3 
2 
2 
2 
3 
Totals 24 31 24 13 27 13 132 


Appendix C, Page 12 

Figure 1: Programs Surveyed by Funding Source Group 

other (n=13) 

pc-option (n=24) 

waiver (n=31) 

ssbg (n=24) 

II. Program Expenditures 
Annual program expenditures for PAS in 1988 averaged about $24 million (Table 2 and 
Figure 3), but varied markedly between and within funding sources (Figure 2). TXIX-PC 
programs tended to have the highest service expenditures per program, with almost half of the 
programs spending over $10,000,000 in 1988. Two TXIX-PC (New York, Texas), one SSBG 
and one Waiver program spent over $100,000,000 on PAS in 1988. The SSBG programs on the 
average had relatively high service expenditures, while the State programs had the lowest average 
expenditures. 


Appendix C, Page 13 

Table 2 : 1988 PAS Expenditure Level Per Program and Average Expenditures Per Program 
by Funding Source Group 

Funding Source DOX-TXDC SSBG 1111 State Other Total 
PC Waiver 
Number of Programs 23 29 22 10 26 10 

1988 PAS Expenditure Level per Program 
Percentage of Programs 

< $100,000 10 5 12 6 
$100,001 - $500,000 13 14 5 10 27 10 14 
$500,001 - $1,000,000 4 3 5 10 8 5 
$1,000,001 - $5,000,000 17 24 36 40 35 40 30 
$5,000,001 - $10,000,000 17 14 27 30 8 20 18 
$10,000,001 - $100,000,000 39 31 18 10 12 30 24 
> $100,000,000 9 3 5 3 

Average 1988 Expenditures Per Program 
(in $ millions) 72.51 13.39 27.87 6.13 2.68 7.99 24.00 

Figure 2: 1988 PAS Expenditure Level Per Program Per Program by Funding Source Group 

txix-pc(n= 23)

50 — 

waiver(n=28) 

• ssbg(n=22) 
O tiii(n=10)
40 —

td: q state(n=27) 
• other(n=12) 

30 


bC 

,et 20 C 


G! 

fa. 

10 


0 
< .1 mil .1-.5 mil .5 -1.0 mil 1-5 mil 5-10 mil 10-100 mil over 100 mil 

Annual PAS Program Expenditures (in $millions) 


Appendix C, Page 14 
Figure 3: 1988 PAS Average Expenditures Per Program by Funding Source Group 

80 


60 


40 


20 


0 

pc-option waiver ssbg tiii state other total 

funding source 

III. Program Caseloads 
The PAS programs surveyed in 1988 served an average of almost 15,000 people per 
program (Table 3 and Figure 5), but this varied among and between funding sources (Figure 4). 
TIII and SSBG programs served the most people on the average. The TIII caseloads may be 
inflated by clients receiving services other than PAS. State and Waiver programs served the least 
people on average (although one Waiver program served over 50,000 clients in 1988). 

Table 3: 1988 Caseload Level and Average Caseloads Per Program by Funding Source Group 

Funding Source 
Number of Programs 
TXIXPC 
22 
TXIXWaiver 
30 
SSBG 
23 
TIII 
6 
State 
24 
Other 
11 
Total 
116 
Size of Program Caseload 
Percentage of Programs 
0 - 200 
201 - 1,000 
1,001 - 5,000 
5000 - 10,000 
10,101 - 50,000 
over 50,000 
9 
23 
27 
9 
27 
5 
37 
10 
37 
7 
7 
3 
9 
17 
39 
17 
9 
9 
17 
67 
17 
58 
13 
17 
8 
4 
18 
45 
36 
25 
16 
30 
9 
16 
4 
Average 1988 Caseloads Per Program 
(in thousands) 10.77 5.80 36.58 53.94 1.43 11.00 14.92 


Appendix C, Page 15 

Figure 4: 1988 Caseload Level Per Program by Funding Source Group 

80 -• pc-option(n=22) 
waiver(n=29) 
70 -ssbg(n=23) 
tiii(n=6) 
60 -state(n=24) 
other(n=13) 

505 


40 


co 

on 

t 30 co 


20 ow 


10


0 

 

< 200 201-1000 1001-5000 5000-10000 10000-50000 > 50000 
# of recipients per year 

Figure 5: Average 1988 Program Caseload by Funding Source Group 

60 
50 40 
30 
20 
10 



0 
pc-option waiver ssbg tiii state other total 

funding source 


Appendix C, Page 16 

IV. Total Hours of Service Provided 
The TXIX-PC and SSBG programs on the average provided over 14 million hours of PAS 
in 1988, while the State programs provided the least (Table 4 and Figures 6 and 7). The response 
rate was fairly low on this item, suggesting that states vary in the degree to which they track 
individual units of service. 

Table 4: Average Total Hours of PAS Provided and Hour Level by Funding Source Group 

Funding Source TXIX-TXIX- SSBG MI State Other Total 
PC Waiver 
Number of Programs 11 12 9 4 14 7 57 

Percentage of Programs 

Total Hours of PAS Provided 
0 - 20,000 27 25 11 14 16 
20,001 - 100,000 9 33 25 29 14 19 
100,001 - 500,000 27 8 22 0 50 43 28 
501,000 - 1,000,000 17 33 25 7 12 
1,000,001 - 5,000,000 18 8 11 25 43 14 
over 5,000,000 18 8 22 25 11 
Average Total Hours of PAS 
(in millions) 14.71 1.39 14.46 2.43 .18 .97 5.75 

Figure 6: Annual Hours of Service Level by Funding Source Group 

60 


. 
pc-option(n=11)
50 


waiver(n =12) 

• ssbg(n=9) 
tiii(n=4)
40 


q state(n=14) 
El other(n=7) 

30 


20 


10 


0 
< .02 .02-.10 .10-.50 .50-1.00 1.00-5.00 > 5.00 
# hours of PAS provided per year (in millions) 


Appendix C, Page 17 

Figure 7: Average Total Hours of Service Provided by Funding Source Group 

15 


10 


5


0 
pc-option waiver ssbg tiii state other total 

funding source 

V. Average Expenditures Per Recipient 
The Waiver and State programs on the average spent the most per recipient (Table 5 and 
Figure 8). TIII programs spent the least per client, but this must be interpreted in light of the 
potentially inflated caseloads for this group. 

Table 5: Average Annual Expenditures Per Recipient by Funding Source Group 

Funding Source TXIX-TXIX- SSBG TM State Other Total 
PC Waiver 

Percentage of Programs 
Average Annual Expenditures Per Recipient 
(in $ thousands) 3.86 7.02 2.70 .12 5.02 1.63 4.36 
Number of Responses 22 29 21 5 22 9 108 


Appendix C, Page 18 

Figure 8: Average Annual Expenditures Per Recipient by Funding Source Group 

8 

6


4 

2


0 
pc-option waiver ssbg tiii state other total 

funding source 

VI. Average Hours of PAS Per Recipient 
The Waiver and State programs on the average provided the most hours per recipient (Table 
6 and Figure 9). TXIX-PC, SSBG and Other programs provided less hours per client, and TIII 
programs provided the least hours per client (this latter figure must again be viewed in light of 
potentially inflated caseloads for TM programs). 

Table 6: Average Hours of PAS Per Week Per Recipient by Funding Source Group 

Funding Source TXIX-TXIX- SSBG 1111 State Other Total 
PC Waiver 

Percentage of Programs 
Average Hours Per Recipient Per Week 
(in hours/week) 14.4 27.4 9.3 1.6 26.0 5.1 16.4 
Number of Responses 10 10 12 4 14 8 57 


Appendix C, Page 19 

Figure 9: Average Hours of PAS Per Week Per Recipient by Funding Source Group 

8 

6


4 

2


0 

 

pc-option waiver ssbg tiii state othertotal 

funding source 

VII. Income Eligibility Requirements 
Twenty one percent of all programs limited eligibility to people whose income fell below 
the 1987 poverty level (Figure 10). Most TXIX-PC programs were eligible only to people below 
the poverty level or very close to it. State, SSBG and Waiver programs tended to set somewhat 
more generous income eligibility limits, and the Title III programs had no income eligibility 
restrictions (Table 7). 


Appendix C, Page 20 

Table 7: Income Eligibility Requirements by Funding Source Group 

Funding Source TXDCTXIX- 
SSBG TM State Other Total 
PC Waiver 
Number of Programs 21 27 23 10 22 10 113 

Percentage of Programs 
Maximum Income b.y Poverty Level a 
< 100% PL 48 19 4 18 40 21 
100% - 150% PL 14 15 13 5 10 
150% - 200% PL 10 7 22 5 9 
200% - 250% PL 5 19 9 23 10 12 
Over 250% PL 5 33 22 32 0 19 
No Limit 10 7 13 100 14 20 19 
Varies by Funding Source 10 9 10 4 
Sliding Scale 8 5 10 2 
a Poverty Level = $5 ,2571year for a single person in the US in 1987 (except Hawaii and Alaska) 
Figure 10: Income Eligibility Requirements 
30 


20 


10 


0 

 

< 100% pl 100-150% 150-200% 200-250% > 250% no max varies sliding 
income eligibility requirements (percentage of poverty level) 


Appendix C, Page 21 

VIII. Age Eligibility Requirements 
People over 60 are most likely to be eligible for publicly funded PAS. Eighty-eight percent 
of all programs were eligible to people in this age group. In contrast, only 44% of the programs 
were open to people under 18 (Figure 11). All TIII programs limited eligibility to people over 60, 
and most TXIX-PC programs were open to people of all ages (Table 8). 

Table 8: Age Groups Eligible by Funding Source Group 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver

 

Number of Programs24 31 24 13 27 13 132 

Percentage Of Programs 

Age Groups Eligible 
• children 
<18 
• working age 
19-65 
• elderly 
over 60 
79 
100 
100 
56 
63 
83 
33 
92 
88 100 
32 
86 
71 
40 
80 
100 
44 
76 
88 

Figure 11: Age Groups Eligible 

100 80 
60 
40 
20 
0 


children working age elderly 

age groups eligible 


Appendix C, Page 22 

IX. Services Offered 
Most programs in 1988 offered a basic core of personal and household services such as 
dressing, bathing, grooming, ambulation, transfers, feeding, meal preparation, light cleaning, 
laundry and grocery shopping (Table 9). Communication and transportation services were less 
frequently provided. Respite was offered by slightly over half of the programs, but emergency 
services were available for only 36% of the programs. Essential paramedical services 
(medication, injections, catheterization, and respiration) were often not provided. The Other 
programs, which consisted primarily of Home Health programs, were most likely to provide 
paramedical services (Table 10). 

Table 9: Percentage of Programs Offering Assistance With Personal Assistance Tasks by 
Funding Source Group 

Funding Source TXIX-TXIX- SSBG TIII State Other Total 
PC Waiver 
Number of Programs 24 31 24 13 27 12 131 

Percentage DI Programs 

Personal Maintenance/Hygiene 
Feeding 96 97 83 77 93 83 90 
Bathing 100 94 88 100 100 100 96 
Dressing 100 94 92 100 100 92 96 
Ambulation 96 94 83 92 93 92 92 
Transfers 96 90 79 85 100 92 91 
Oral Hygiene and Grooming 100 94 88 100 100 92 95 
Skin Maintenance 96 84 63 85 93 92 85 
Menstrual Assistance 88 65 38 23 78 67 63 
Bowl and Bladder Assistance 75 84 38 69 85 92 73 
Prosthesis Assistance 67 84 29 38 81 92 66 
Range of Motion 67 61 29 85 81 92 66 
Foot care 71 68 42 54 67 83 63 
Household Assistance 
Light Cleaning 
Heavy Cleaning 
96 
38 
90 
35 
100 
50 
100 
85 
89 
56 
92 
50 
94 
49 
Laundry 
Grocery Shopping 
Run Errands 
88 
83 
58 
90 
81 
68 
100 
100 
96 
100 
92 
92 
81 
74 
67 
83 
83 
75 
90 
85 
74 
Meal Preparation/Cleanup 96 90 100 92 93 92 94 
Chore Service 42 55 83 85 59 58 62 
Repairs/Maintenance 
Child care 
13 
4 
32 
3 
25 
29 
77 
15 
30 
30 
50 
33 
33 
18 
Scheduling/Assigning 
Pay Bills/Budget 
Plan Meals 
4 
21 
75 
19 
52 
74 
29 
79 
75 
38 
54 
62 
37 
56 
63 
58 
42 
58 
27 
51 
69 

Short-Term Services 
Emergency 38 35 38 38 26 50 36 
Respite 42 74 25 85 48 58 53 


Appendix C, Page 23 

Table 9, continued: Percentage of Programs Offering Assistance With Personal Assistance 

Tasks by Funding Source Group 

Funding Source TXIX-TXIX- SSBG TM State Other Total 
PC Waiver 

Number of Programs 24 31 24 13 27 12 131 

Percentage Qf Programs 

Communication Tasks 
Phone Calls 25 61 50 77 78 58 57 
Write Letters 21 61 50 69 70 67 55 
Handle Money 13 29 54 62 59 42 41 
Agency Liaison 29 52 29 77 56 83 50 
PAS Paperwork 29 32 25 38 56 42 37 
Interpreters (deaf) 25 29 17 23 33 25 26 
Reading 25 45 33 54 44 50 40 
Transportation Tasks 
Medical Escort 75 65 50 69 81 67 68 
Non-Medical Escort 29 35 50 69 70 33 47 
Driving (med) 42 39 38 62 67 50 48 
Driving (non-med) 25 26 38 69 63 42 41 

Table 10: Percentage of Programs Offering Assistance With Paramedical Tasks and Average 
Number of Paramedical Tasks Provided by Funding Source Group 

Funding Source TXIX-TXIX- SSBG TIII State Other Total 
PC Waiver 
Number of Programs 24 30 25 12 27 15 133 

Percentage Of Programs 
Paramedical Tasks 
Medications 58 52 42 69 63 75 57 
Respiration 38 58 25 38 63 67 48 
Catheterization 29 42 29 23 52 50 38 
Injections 21 39 17 38 41 50 33 

Average Sum of Paramedical Tasks 

1.5 1.9 1.1 1.7 2.2 2.2 1.8 

Appendix C, Page 24 

X. Service Availability 
Forty-three percent of all programs did not limit the days or times services were available 
(Table 11). State programs, which tended to serve younger people with physical disabilities, were 
most likely to allow attendants to work at any time as needed. Twenty percent of all programs 
allowed service at any time only in limited circumstances (e.g. special eligibility requirements, 
separate application process, consumer lives in limited geographic area, etc.), and 37% limited 
availability in all cases. The TIII programs, which rely heavily on agency providers and offer 
very few hours per week, were the most likely to limit availability. 

Table 11: Days and Times Service is Available by Funding Source Group 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver 

 

Number of Programs24 29 24 13 27 12 129 

Percentage of Programs 
Services are Available 24 hrs./day, 7 days/wk. 

Yes 46 48 29 74 25 43 
No 38 21 58 69 22 33 37 
Varies 17 31 13 31 4 42 20 

XI. Service Limits 
In addition to the eligibility requirements and limitations on the types and times services are 
available, programs controlled costs by limiting the amount of services available. The total amount 
of PAS provided per person was usually limited in terms of hours per week and/or expenditures 
per month (Table 12). Services could also be limited by programmatic budgetary constraints 
instead of per person service caps, so it is impossible to tell which programs have no service limits 
at all from this survey data. 

Seventy-five percent of the programs which responded to the question stated some sort of 
hour limit. Fourteen percent of these programs limited hours of PAS to less than 20 per week 
(Figure 12). A small number of programs (8%) which had limits below 20 hours per week in 
1984 (Appendix D) had raised the limit to over 20 hours by 1988. SSBG, Waiver and Other 
programs were most likely to have high hour limits (i.e. more than 60 hours per week) or no limits 
on hours. 


Appendix C, Page 25 

A similar pattern emerged from the per person expenditure limits. Over seventy-five 

percent of the programs responding limited expenditures per client per month, most at between 

$500 and $1000 (Figure 13). The Other programs also tended to have fairly high monthly 

expenditure limits or no expenditure limits at all. Waiver programs also had high limits. 

Table 12: Maximum Hours Allowed Per Week Per Recipient and Maximum Expenditures Per 
Recipient by Funding Source Group 

 

Funding SourceTXLX- TXIX- SSBG TIII State Other Total 
PC Waiver 

Percentage of Programs 
Hours/Week Limit 

0-20/wk 18 19 11 14 9 14 14 
21-30/wk 23 6 17 22 16 
31-40/wk 9 13 6 22 11 
41-50/wk 5 9 3 
51-60/wk 9 6 429 6 
over 60/wk 14 25 22 13 14 16 
No Max. Set 18 25 39 43 17 14 25 
Other* 5 7 6424 14 9 

Number of Programs 22 16 18 8 23 7 93 

Cost/Month Limit 

$0 - $500/mo. 18 17 25 30 14 
$501 - $1000/mo. 41 44 44 50 14 41 
$1000 - $2000/mo. 12 29 5 
over $2,000/mo. 6 20 5 14 9 
NH Level** 6 20 5 8 
No Max. Set 29 4 39 75 10 43 23 

Number of Programs 17 25 18 4 20 7 91 

*Other = varies by county, NH limits, limited by available funds 
**NH Level = State Average Medicaid Nursing Home Reimbursement 


E
tx 20 - 
o. 
en 
10
0 
Figure 13: Maximum Expenditure Limit Per Month Per Recipient 
50 - 
40 
30 - 
Appendix C, Page 26 
Figure 12: Maximum Hours Allowed Per Week Per Recipient 
30 - 
0-20 21-30 31-40 41-50 51-60 60+ No Max Other* 
hours per week 
*Other = varies by county, NH limits, limited by available funds 
$0-500 $501-1000 $1001-2000 $2001+ NH Level* No Max 
maximum expenditure limit per recipient per month 
*NH Level =Medicaid Nursing Home Reimbursement

Appendix C, Page 27 

XII. Medical Supervision Requirements 
Sixty-two percent of all programs required some level of ongoing medical supervision, for 
some or all PAS tasks (Table 13). Almost all TXIX-PC programs required ongoing medical 
supervision, whereas State and SSBG programs were the least likely to require medical 
supervision. 

Table 13: Percentage of Programs Which Require Medical Supervision and Changes in 
Medical Supervision Requirements by Funding Source Group 

Funding Source TXIX-TXIX- SSBG Till State Other Total 

PC Waiver 
Number of Programs 24 29 24 12 24 12 125 

Percentage of Programs 
Medical Supervision Required? 

Yes 8876 29 83 21 92 61 
No 1324 71 1779 8 39 


XIII. Provider Types Utilized 
Agency providers (including employees of Home care or Home health agencies) were the 
most common provider type used, followed by independent providers (Figure 14). Over 40% of 
the programs used two or more types of providers. Only 25 programs responding used 
government providers (including both civil service and non-civil service employees). State 
programs were most likely to utilize independent providers, while Waiver and Other programs 
were most likely to use agency providers (Figure 15). The SSBG and TXIX-PC used a mix of 
providers. 


Appendix C, Page 28 

Figure 14: Total Number of Programs Using Each Provider Type 

government providers (n=25) 

independent providers (n=56) 

agency providers (n=74) 

Figure 15: Percentage of Programs Utilizing Provider Types by Funding Source 

80 II 
IPs (n=56) 
El Agency (n=74) 

Gov (n=25) 
60 


40 


20 


0 

 

pc-option waiver ssbg tiii stateothertotal 
funding source 


Appendix C, Page 29 

XIV. Provider Pay and Benefits 
Attendant wages varied by provider type and funding source (Table 14). Overall, family 
providers and independent providers received the lowest hourly wage, and home health and home 
care agency workers received the highest wage (Figure 16). Agency providers also had the highest 
average number of benefits across funding source groups (Table 15). In general, the number of 
benefits for attendants was very low: the mode was zero benefits for program attendants (Figure 
17). 

Table 14: Average Hourly Attendant Wage by Funding Source Group 

 

Funding SourceTXIX- TXIX- SSBG 1111 State Other Total 
PC Waiver 

Average Hourly Wage 

Provider Type 

• Independent Providers 
IPs 4.59 6.54 4.18 4.00 4.67 4.84 4.85 
n 9 9 13 1 18 2 52 
Family Members 2.62 4.38 4.67 3.50 4.05 
n 1 5 6 7 19 

•Private Agency Workers 
Home care Agencies 6.17 8.67 5.56 5.77 5.87 4.47 6.62 
n 10177 467 51 

Home health Agencies 5.72 8.67 3.43 6.15 5.67 4.67 6.95 

n 512 1223 25 

•Government Workers 
Civil Service 8.00 6.73 5.42 4.42 6.18 
n 2432 11 

Non-Civil Service 6.05 3.35 5.13 4.69 4.75 5.07 
n 3 12 13 10 


Appendix C, Page 30 

Figure 16: Hourly Attendant Wage by Provider Type and Wage Level 

In IP (n=52) 

111 Family (n=19) 

HCA (n=51) 

60 


1:2 HHA (n=25) 
q NCS Gv (n=10) 
• CS Gv (n=11)
50 


40 


30 


20 


7 

10 

7

7

0/ 

< or = $3.25 $3.26-$4.88 $4.89-$6.50 over $6.50 

hourly wage 

Table 15: Average Number of Attendant Benefits* by Funding Source 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver 

Average # of Benefits 
Provider Type 

•Independent Providers 0.9 0.3 1.4 6.0 1.3 0.0 1.1 
n 119 14 1 192 56 

•Private Agency Workers 2.7 3.2 2.5 4.6 2.8 4.7 3.2 
n 1522135 9 10 74 

•Government Workers 4.0 0.0 2.6 1.3 5.0 3.5 2.9 
n 4 1 11432 25 

*Benefits = social security, unemployment, worker's compensation, health insurance, sick leave, vacation, 
transportation, retirement 


Appendix C, Page 31 

Figure 17: Number of Benefits Received by Provider Type 

80 

• IPs (n=56) 
El Agency (n=74) 
O Gov (n=25)
60 

40 


20 


0 

 

0 1 2 3 4 5 6 7 
number of benefits 

XV. Consumer Control Issues 
Among the programs which used independent providers, over 80% allowed the recipient to 
hire or fire the attendant, and over half allowed the consumer to train the attendant (Table 16). 
Less than half of the programs allowed the recipient to pay the attendant . State programs are the 
most likely to encourage all three types of consumer control, followed by SSBG and TXIX-PC 
programs. 

Table 16: Degree of Consumer Control for Programs Which Utilize Independent Providers by 
Funding Source 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver 

 

Number of Programs12 14 16 4 25 4 75 

Percentage of Programs 

Consumer Can Hire/Fire Attendants 
83 79 88 0 96 50 
Consumer Can Pay Attendants 
25 7 56 0 76 25 44 
Consumer Can Train Attendants 

52

50 29 44 0 84 25 


Appendix C, Page 32 

XVI. Summary of Funding Sources 
MEDICAID PERSONAL CARE OPTION 
(n=24, 18% of total programs surveyed) 

Among the largest funding groups: 
Avg. annual expenditures = $72,512,000/per program 
Avg. recipients/program = 10,770 
Avg. total hours per year = 14,706,000 

Offers basic core of services: 
Unlikely to offer paramedical services 
42% programs offer respite 

Service allowance: 60% offer <40 hours/week 
Avg. exp/person/year = $3,860 
Avg. hrs/recipient/wk = 14 

High medical supervision requirements 
Targets poor people (72% require incomes of < 200% of poverty level) 
Targets all ages, all disabilities 
Likely to use individual or agency providers 
More likely to be available any day, any time (48%) 

MEDICAID WAIVER PROGRAMS 
(n=31, 23% of total programs surveyed) 

Smaller programs 
Avg. annual expenditures = $13,393,000 
Avg. recipients/program = 5,800 
Avg. total hours = 1,394,000 

Largest variety of services: 
higher level of paramedical services 
74% offer respite 

Most generous service allowance: 56% offer >40 hrs/week 
Highest avg. exp/person/year = $7,020 
Avg. hrs/recipient/wk = 27 

High medical supervision 
Income eligibility varies 
Target particular disabilities and age groups 
Use agency and individual providers 
More likely to be available any day, any time 


Appendix C, Page 33 

TITLE III PROGRAMS 
(n=13, 10% of total programs surveyed) 


Large caseloads and low expenditures 
Avg. annual expenditures = $6,131,000 
Avg.recipients/program = 53,940 
Avg. total hours = 2,426,000 

Offers basic core of services: 
Unlikely to offer paramedical services 
85% offer respite (high) 

Service allowance: 
Lowest hours/week/person = 2 
Lowest avg. exp/person/year = $120 

No service limits stated 
83% require medical supervision 
No income requirement 
Target those over 60 years old 
Use agency and government providers 
Least likely to be available any day, any time 

TITLE XX SSBG PROGRAMS 
(n=24, 18% of total programs surveyed) 

Second largest programs 
Avg. annual expenditures = $27,869,000 
Avg. recipients/program = 36,580 
Avg. total hours = 14,460,000 

Offers basic core of services: 
Least likely to offer paramedical 
25% offer respite (low) 

Service allowance: 
34% offer <40 hours/week 
Low avg. exp/person/year = $2,700 
Avg. hrs/recipient/wk = 9 

Least likely to require medical supervision 
Target poor people, 39% require income <200% poverty level 
Target adults, all disabilities 
Use all types of providers 
Only 29% have providers available any day, any time 


Appendix C, Page 34 

STATE PROGRAMS 
(n=27, 20% of total programs surveyed) 


Smallest programs 
Avg. annual expenditures = $2,684,000 
Avg. recipients/program = 1,430 
Avg. total hours = 183,000 

Offers basic core of services: 
Most likely to offer paramedical 
48% offer respite 

Service allowance: 
Only 43% offer >40 hours/week 
High avg. exp/person/year = $5,020 
Highest avg/hrs/recipient/wk = 26 

Lowest medical supervision requirements 
High income requirements (only 38% < 200% of poverty level) 
Variation in age group and disability targets (gap filler) 
Most likely to use IPs 
Available any day, any time 


WORLD 
INSTITUTE 
ON DISABILITY 

1720 Oregon Street, Suite 4 • Berkeley, CA 94703 • (415) 486-8314, voice or TDD 

TITLE OF PERSONAL ASSISTANCE PROGRAM 


RESPONDENT'S NAME 
RESPONDENT'S TITLE 


AGENCY 
ADDRESS (DEPARTMENT) 
(STREET) 
(CITY, STATE, ZIP) 
TELEPHONE( TTY( 
PLEASE ANSWER EVERY QUESTION WHICH APPLIES TO YOUR PROGRAM. THE 


QUESTIONS REFER TO THE LAST COMPLETED FISCAL YEAR (i.e.
1987-88 OR CALENDAR YEAR 1987). IF YOUR DATA COVERS ANOTHER 
PERIOD PLEASE SPECIFY IN THE SPACES PROVIDED. 

a public policy center dedicated to the elimination of handicappism through the promotion 
of independence, equity of opportunity and full participation of people with disabilities 

,ctnt) 


A. SERVICES PROVIDED 
Please check all of the following tasks 
the program provides assistance. 
for which 
(1-4 
(5-6 
Al. PERSONAL SERVICES 

1. [ ] Feeding (7 
2. [ Bathing/Showering 
3. [ ] Dressing 
4. [ ] Ambulation 
5. [ ] Moving into and out of bed 
6. [ 1 Grooming and oral hygiene 
7. [ Skin care 
8. [ ] Menstrual care 
9. [ Respiration 
10. [ 1 Bowel and bladder care 
11. [ 1 Care and assistance with prosthesis 
12. [ 1 Catheterization 
13. [ 1 Injections 
14. [ ] Medication 
15. [ ] Range of motion 
16. [ Foot care (22 
A2. HOUSEHOLD SERVICES 


1. Light cleaning (23 
2. [ 1 Heavy cleaning 
3. [ Laundry 
4. [ Grocery shopping 
5. [ Running errands and other shopping 
6. [ ] Meal preparation and clean-up 
7. [ ] Chore services 
8. Repairs, maintenance, renovation 
9. [ ] Taking care of children 
10. [ 1 Defining, scheduling household tasks, and 
deciding who will do them 
11. [ 1 Paying bills, budgeting 
12. [ 1 Planning meals, making grocery and other 
shopping lists (34 
A3. COMMUNICATION SERVICES 


1. [ 1 Making telephone calls (35 
2. [ Writing letters 
3. [ ] Handling money or checks 
4. [ Getting assistance from agencies in the 
community 
5. [ 1 Handling paperwork for paid helpers (personal 
assistance service providers) 
6. [ ] Interpreting (for people who are deaf) 
7. [ Reading (newspaper, books, etc.) (41 
A4. TRANSPORTATION ASSISTANCE SERVICES 


1. [ 1 Escort, medical trips only (42 
2. [ Escort, non-medical 
3. [ Driving, medical trips only 
4. [ Driving, non-medical (45 

2 
A5. SHORT-TERM SERVICES 
1. [ ] Emergency (46 
2. ] Relief (Respite) (47 
A6. Is medical supervision required for any of the services 
provided? 
1. [ 1 Yes 2. [ ] No (48 
B. ELIGIBILITY CRITERIA 
Bl. What are the disabilities of the people who are eligible for 
services from this program? (Check all that apply.) 
1.[ ] Physical disability (49 
2.1 Brain injury or trauma 
3.[ ] Emotional Disability (Mental illness) 
4.1 ] Cognitive Disability (Mental retardation) (52 
B2. What age groups are eligible for the program? 
1.[ ] Less than 18 years of age (53 
2.[ ] 19-60 years of age 
3.[ 1 61-65 years of age 
4.1 66 years or over (56 
B3. Which of the following are criteria for eligibility in this program? 
(i.e. must an applicant fit any of these categories in order to be 
eligible?7 (Circle all that apply.) 
1.1 ] Employed (57 
2.[ ] Unemployed 
3.1 1 Medicaid recipient or eligible 
4.[ ] SSI recipient or eligible 
5.[ ] At risk of institutionalization 
6.1 ] Family unable/unwilling to provide services 
7.1 ] Severely disabled 
8.1 ] Able to manage own personal assistance service 
provider 
9.[ ] Resident in certain geographic area 
10.[ ] Physician's orders (66 
B4. What is the maximum yearly income an individual may have and 
still be eligible for the program? (67-71 
(NOTE: If your program has multiple funding sources, 
please indicate the highest income)

B5. Which one of the following best describes your program? 


1.[ ] An entitlement program in which all people in a 
specific category are eligible for the program. (72 
2.[ ] Not an entitlement program and we have a waiting 
list of people (please specify). (73-77 
3.[ ] Not an entitlement program and we do not have a 
waiting list. 


B6. If a recipient does not like the assessment results, what 
methods of redress does s/he have? 


(78 


C. AMOUNT AND AVAILABILITY OF SERVICE PROVIDED 
Cl. What was the average number of hours per week per person and the 
total number of hours of personal assistance services delivered by 
your program in the last fiscal year for which data is available 
(specify year ). (5-6 


Average hours Total 
per WEEK hours per 
per person YEAR 
(7-19) (20-74) 


1. All types of services combined 
a. Personal services 
b. Household Services 
c. Communication Services 
d. Transportation Assistance 
Services 
e. Short-term Services 
2. Data unavailable 
C2. Are services available 24 hours a day, 7 days a week? 


 


1. [ ] Yes 2. [ No 3. [ ] Varies by (5 
County or Region 
C3. What is the maximum number of hours PER WEEK allowed (6-7 
for each recipient? 


C4. IF VARIES by county or region, give highest and lowest allowed. 


1. Highest number hours/week (8-9 
2. Lowest number hours/week (10-11 
C5. What is the maximum dollar allotment PER MONTH per recipient? 


(12-13 



4 
C6. IF VARIES by county or region, give the highest and lowest 
allotment. 
1. Highest allotment $ 2. Lowest allotment $ 
D. RECIPIENTS 
(14-15 
(16-17 
Dl. For FY 1987-88 what is the unduplicated count of recipients for all 
personal assistance services delivered by your program (including 
personal care, household, communication, transportation and shortterm 
assistance) 
= number of recipients for the last fiscal year (18-22 
for which data is available (specify year (23-24 
D2. What percentage of the recipients in your program are served by: 
1. Homecare/Homehealth agencies (25-27 
2. Government agencies (28-30 
3. Individual providers (31-33 
D3. If you offer the individual provider mode,of service, do recipients 
have the right to: 
1. [ Hire and fire assistants? (34 
2. [ ] Pay assistants? 
3. [ ] Train assistants? (36 
D4. Do recipients participate in deciding on hours and type of services 
they will receive? 
1. [ ] Yes 2. [ ] No (37 
E SERVICE PROVIDERS 
El. What is the hourly pay of personal assistance service providers? (38 
(If there is more than one rate in any category, please give the 
highest and lowest rate of pay.) Single 
Rate High Low 
(39-62) (5-23) (24-47) 
1. Individual providers $ $ $ 
2. Paid family members $ $ $ 
3. Homecare agency employees $ $ $ 
4. Employees of certified 
home health agencies $ $ $ 
5. Government employees 
(civil service) $ $ $ 
6. Government employees 
(non-civil service) $ $ $

E2. Which of the following benefits are received by personal assistance 
service providers? (Check all that apply.) 
HOMECARE/ GOV'T 
INDIVIDUAL HOME HEALTH CIVIL 
PROVIDER EMPLOYEE SERVANT 
(48-55) (56-63) (64-71) 


1. Vacation/holiday pay 17[] I7 

2. Sick leave [ ] 17 17 

3. Health Insurance 17 17[] 

4. Worker's Compensation 17 I7I7 

5. Social Security 17[1 13 

6. Unemployment Compensation r7[] 17 

7. Transportation costs 17[] 17 

8. Retirement or pension plan 17[] 17 

F. EXPENDITURES 


Fl. What were the total expenditures for Personal Assistance Services 
delivered by your program in the last fiscal year for which data 
is available (specify year (72-73 


(5-14 


F2. If possible, please indicate how these monies were divided among the 
following services (see page 1 for definition of terms) 


1. Personal Services $ (15-24 


2. Household Services $ (25-34 


3. Communication Services $ (35-44 


4. Transportation Assistance Services $ (45-54 


5. Short-Term Services $ (55-64 


6. Data unavailable (65 


F3. What percentage of the total expenditures for the program goes 
toward: 


1. Administration % (66-68 


2. Provider wages and benefits % (69-71 


a. Independent providers % (72-74 


b. Contract agency providers % (75-77 


c. Government agency providers % (5-7 


d. Other (specify ) % (8-10 



6 
F4. Check all of the 
administrative 
following activities 
budget. 
which are funded under your 
1. 
2. 
3. 
4. 
5. 
6. 
7. 
8. 
9. 
10. 
[ 
[ 
[ 
[ 
[ 
[ 
[ 
[ 
[ 
[ 
] 
] 
] 
] 
] 
] 
] 
] 
] 
] 
Eligibility determination 
Needs assessment 
Provider recruitment 
Provider referral 
Provider training 
Recipient outreach 
Recipient training 
Provider supervision 
Case management 
Other 
(11 
(20 

F5. Which of the following are funding sources for the program and the 
dollar amounts and/or percentages that come from each source in the 
last fiscal year for which data is available 


(specify year ) (21-22 
A. FEDERAL SHARE ONLY include match)(Does not 
(23-62) (45-56) 

1. Title XIX (Medicaid) $ % 
2. Title XIX Waiver $% 
3. Title XX (Social 
Services Block Grant) $% 
4. Title III $% 
B. NON-FEDERAL (including NON-FEDERAL match) 
(5-44) (57-68) 
1. State Funds $ 
2. County/Municipal Funds $ 
3. Private Funds $ 
4. Client Share of Cost $ 
F6. What percentage, if any, of program recipients contribute a share of 
the cost of their services? 
% (69-71 



7 
G. PROGRAM CHANGES 
Gl. Since 1984 what changes (if any) have been made in the program's 
eligibility criteria? 
1. [ ] Liberalized eligibility (72 
2. [ ] Developed functional ability assessment tool 
3. [ ] Increased maximum income eligibility figure 
4. [ ] Created minimum disability level 
5. [ ] Instituted statewide uniform assessment process 
6. [ ] Other: (77 
G2. Since 1984 what changes (if any) have been made in the degree of 
recipient control allowed in the program? 
1. [ ] Changed provider mode from individual providers to 
agency providers (5 
2. [ ] Established consumer board 
3. [ ] Instituted client management training 
4. [ ] Changed provider mode from agency to individual 
providers 
5. [ ] Formalized client grievance mechanisms 
6. [ ] Other: (10 
G3. Since 1984 
instituted? 
what other quality assurance mechanisms have been 
1. [ ] Independent case management (11 
2. [ ] Program monitoring, describe 
3. [ ] Onsite review of provider performance based on 
service standards 
4. [ ] Statewide coordination, describe 
5. [ External quality assurance committees 
6. [ Competitive agency provider selection based on 
quality (not lowest bid) 
7. [ ] Other: (17 
G4. Since 1984 what changes have been made in your management information 
system? 
1.[ ] Developed system (18 
2.[ ] Reduced system 
3.[ ] Improved system 
4.[ ] Other: (19 
(20

APPENDIX D: 

CHARTBOOK OF PROGRAM COMPARISONS BY 
FUNDING SOURCE ON 1984 AND 1988 NATIONAL 
SURVEY DATA 



Appendix D, page 2 

Table of Contents 

Section Page 

Introduction 
Hypotheses 

5 

Methodology 
Questionnaire Design 6 
Survey Procedure 6 
Response Rates 7 
Analysis Procedure 7 
Reliability 8 
Validity 9 

Findings 

I. Program Expenditures Changes 11 

II. Program Caseload Changes 13 

III. Program Hours Changes 16 

IV. Changes in Service Allocation: 
Expenditures Per Recipient 18 

V. Changes in Service Availability: Days 
and Times PAS Can Be Provided 21 

VI. Changes in Service Limits Per Consumer 21 

VII. Changes in Medical Supervision Requirements 22 

VIII. Changes in Amount of Paramedical 
Services Provided 23 

IX. Consumer Control Changes 24 

X. General Program Policy Changes 
Since 1984 25 

XI. List of Programs Contacted in 1984 and/or 1988 27 


Appendix D, page 3 

List of Tables 

 

Table Page 

1: Comparison of 1984 and 1988 Average Expenditures 


Per Program by Funding Source Group

11 

2: Magnitude of Growth in Total Program Expenditures 
Between 1984 and 1988 by Funding Source Group, in 


Total Dollars and Corrected for Inflation 12 

3: Comparison of 1984 and 1988 Average Program Caseloads 


by Funding Source Group 14 

4: Magnitude of Growth in Program Caseloads Between 1984 


and 1988 by Funding Source Group 15 

5: Comparison of 1984 and 1988 Average Total Hours of PAS 


Provided Per Program by Funding Source Group 16 

6: Magnitude of Growth in Total Program Hours Between 


1984 and 1988 by Funding Source Group 17 

7: Comparison of 1984 and 1988 Average Annual Program 


Expenditures Per Client by Funding Source Group 19 

8: Magnitude of Change in Annual Program Expenditures Per 
Client Between 1984 and 1988 by Funding Source 20 
9: Days and Times Service is Available by Funding Source Group 21 
10: Comparison of 1984 and 1988 Maximum Hours Allowed 
Per Week Per Recipient by Funding Source 22 
11: Change in Maximum Annual Expenditures Per Recipient 
Between 1984 and 1988 by Funding Source 22 
12: Percentage of Programs Which Require Medical Supervision and 
Changes in Medical Supervision Requirements by Funding Source 23 
13: Change in Number of Paramedical Services Provided 
Between 1984 and 1988 23 
14: Degree of Consumer Control for Programs Which Utilize 
Independent Providers by Funding Source 
24 

15: Program Changes Since 1984 25 

Appendix D, page 4 

List of Figures 

Figure Page 

1: Comparison of 1984 and 1988 Average Expenditures Per 
Program by Funding Source Group 
12 

2: Magnitude of Growth in Program Expenditures Between 1984 and 
1988 by Funding Source, In Total Dollars and Corrected for Inflation 
13 

3: Comparison of 1984 and 1988 Average Program Caseloads by 
Funding Source Group 14 
4: Magnitude of Growth in Program Caseloads Between 1984 and 
1988 by Funding Source Group 15 
5: Comparison of 1984 and 1988 Average Total Hours of PAS 
Provided Per Program by Funding Source Group 17 
6: Magnitude of Growth in Total Program Hours Between 1984 and 
1988 by Funding Source Group 18 
7: Comparison of 1984 and 1988 Average Annual Program 
Expenditures Per Client by Funding Source Group 19 
8: Magnitude of Change in Expenditures Per Recipient Between 
1984 and 1988 by Funding Source Group 20 

Appendix D, page 5 

Introduction 

The following data is derived from the World Institute on Disability's (WED) two 
nationwide surveys of government-funded programs for people of all ages with disabilities 
which offer personal maintenance and/or household/domestic service on a long-term basis 
or short-term (respite) basis. These surveys were conducted in 1985 and 1989, and 
represent data from fiscal or calendar years 1984 and 1988. This document is intended as a 
summary text of major changes among PAS programs as a whole and by primary funding 
source. It provides brief descriptions of major findings in key program areas, followed by 
detailed tables and figures. 

WID's first 1985 survey and resulting monograph, Attending to America: 
Personal Assistance for Independent Living (Litvak, Heumann and Zukas, 1987), provided 
an overview of personal assistance programs throughout the United States. It also 
highlighted the lack of a comprehensive federal policy and integrated funding for personal 
assistance services (PAS), which led to a basic research issue: how do the various funding 
sources (and their concomitant regulation) affect the design of these programs? The 
resulting research project involved re-analyzing the original 1984 survey data as well as 
conducting another survey in 1989. The PAS programs surveyed were placed into six 
groups, based on their primary source of federal funding. For each survey, these groups 
were compared on the critical program variables, both among each other, and between 
funding sources. 

The two surveys were also compared with each other, in order to answer the 
general question, "what changes have occurred among these programs between 1984 and 
1988?", and also to answer the more specific question, "are the changes which have 
occurred between 1984 and 1988 related to program funding source?" The changes which 
have occurred between the two survey years are the subject of this report. 


Appendix D, page 6 

Methodology 

Questionnaire Design 

Questionnaires in both 1985 and 1988 focused primarily on basic descriptive data, 

i.e. number of recipients served, program expenditures, hours of service provided, type of 
service provided, program regulations. There were slight differences in the content of the 
two surveys. Some of the items used in 1985 were qualified to make finer distinctions, 
e.g., provider types were were more specifically categorized, additional services were 
listed, hours of service were broken down by type. Other items which had very low 
response rates were dropped from the survey entirely, e.g., consumer control options for 
agency or government providers, demographic breakdowns for populations served. A 
somewhat longer questionnaire was developed in 1989 for programs not previously 
surveyed, in order to obtain additional data from these programs. All program 
administrators were also asked if there had been any substantial change with regard to 
various program features since 1985. 
Survey Procedure 

Several types of programs were not included in either survey. Protective 
service programs (those aimed at preventing abuse or neglect of adults and children) were 
only included if these programs served people on a long-term basis. Programs targeted 
exclusively for people with mental illness or mental retardation were not included. 
Temporary services for people who are acutely ill or for those in transition from the 
hospital, nursing home or institution to the community were also not included. In addition, 
shared attendant programs in congregate living arrangements were not included. 

The major methodological difference between the two surveys was the procedure 
for gathering the data: in 1985 the surveys were completed by the wrD research team 
primarily through phone interviews with program administrators, whereas in 1989, 
surveys were simply mailed to the program administrators. The latter method, though less 
time-consuming for the research team, led to more incomplete and inconsistent data on 
some programs. Follow-up mailings and phone calls were conducted to encourage 
administrators to respond and to clarify specific responses. Special effort was made to 
ensure that all the programs funded by the Medicaid Personal Care Option responded. 


Appendix D, page 7 

Response Rates 

One hundred and seventy-five programs were contacted in 1985. Nineteen of these 
were not included in this study because of inadequate state wide data, or because the 
administrator refused to be interviewed. A total of 157 questionnaires were included in 
the analysis. 

After two mailings and six months of follow-up phone calls, 132 questionnaires 
were received in 1989. Of these, 26 (20%) were from programs not previously contacted, 
and 106 (80%) were from programs WID had interviewed in 1985. Several of the 
questionnaires received represented 2 or more programs interviewed separately in 1985, so 
a total of 117 programs interviewed in 1985 were accounted for in the 1989 survey. This 
constitutes a 75% return rate for the PAS programs contacted in 1984. A list of both the 
1984 and 1988 questionnaires is included in Section XI of this report. 

Despite the extensive follow-up procedures used, there is no definitive account as to 
why 25% of the programs responding in 1984 failed to respond in 1988. However, the 
reasons identified for some of these programs are probably representative. During the 
follow-up phone calls, one program administrator interviewed in 1985 simply refused to 
complete the 1989 survey, and it is likely that some other administrators also decided not to 
invest the time required to complete our questionnaire. Twelve other programs contacted in 
1984 were found to be completely defunct or to no longer offer PAS. 

Analysis Procedure 

In order to get an accurate measure of growth, the eight questionnaires which 
represent a total of 19 programs surveyed in 1984 had to be wieghted. Because of the 
varied response rates and the addition of new programs, the comparison between 1984 and 
1988 data was done in two different ways: 

1) Comparisons of overall group means -- Programs were assigned to one of six 
funding groups in both 1984 and 1988, and these group means were compared. 
These calculations included new programs added in 1988 to the data set, as well as 
programs which responded in 1984, but failed to respond in 1988. 


Appendix D, page 8 

2) Within-program measures of magnitude of change -- Only programs which 
responded in both 1984 and 1988 were analyzed for individual program changes. 
Programs which failed to provide data on a given item in either survey year were 
dropped from that analysis. 

For the examination of within-program changes by funding source, programs 
which had changed or consolidated funding could not be included, so the total n for these 
analyses are greater than the sum of the funding source group ns. The number of 
responses used to calculate group means tended to be fairly low because of these 
limitations, which decrease reliability. 

Reliability 

The survey is intended to gather specific information based primarily on objective, 
written data from program regulations and annual budgets and reports. However, state 
management information systems (MIS) varied tremendously in level of sophistication, 
methods of collecting and categorizing data, and the types of data collected. Many Title III 
programs, for example, include a wide array of services unrelated to PAS (e.g. home-
delivered meals and adult day care) but keep records only on total units of service provided 
in each county. The caseloads for these programs were therefore generally inflated, and in 
many cases had to be dropped from the longitudinal analyses. 

The low response rate on particular items suggests that the data requested is not 
easily placed into the stated categories. For example, there was a high percentage of 
missing data on consumer income eligibility requirements. This may be due to the variety 
of income and asset deduction allowances in the programs, which made a single figure 
difficult to derive. 

Because this report is based on data from both survey years, the problem of 
missing data is compounded. Only a subset of programs had reliable data from both 
survey years, and the low ns therefore limit the representativeness of these comparisons. 

Despite the objective nature of the data requested, the reliance on the knowledge of 
a single administrator may also limit reliability. In some cases, the administrator was new 
to the program or position, or he/she had little to do with particular aspects of the program 

(e.g. assessments). When there appeared to be major gaps in questionnaire responses, 

Appendix D, page 9 

researchers attempted to contact other program representatives to supplement or verify the 
data provided. For the most part, however, the data administrators provided was simply 
recorded as it was presented. 

The expenditure, hour, and caseload data has specific limitations. Whenever 
possible, this data was recorded for fiscal or calendar years 1984 and 1988, but in some 
cases the programs could only provide figures from fiscal or calendar 1983 or 1985 and 
1987 or 1989 data. No attempt was made to convert these figures to 1984 and 1988 levels 
using the consumer price index or other means. 

Validity 

The key validity issue is whether the concepts and definitions used in this study are 
sufficiently clear and precise. The definition of what constitutes a PAS program, and how 
this determination is made, is of central importance. For example, distinguishing Medicaid 
home health programs which target people who are acutely ill and in need of significant 
amounts of medical services on an intermittent basis from those programs which offer PAS 
on a long-term basis was quite difficult (at least one program surveyed in 1984 and 
analyzed with that data set was discovered to be a short-term home health program when 
contacted again in 1988). The identification and inclusion of such programs were often 
based on the administrator's judgement as to whether his/her program actually fit the stated 
criteria. The opposite problem occurred with some program administrators who had a 
very narrow concept of attendant services (i.e. programs for disabled working age people 
who are employed or employable). In these cases, the administrator had to be convinced 
that if, for example, the program only served older people for a few hours a week on a 
regular basis, it was in fact an attendant service program. 

The validity of the funding source groups is not certain. Programs were originally 
grouped by primary federal funding source into twelve categories, but in order to have 
groups large enough for meaningful statistical analysis, these were collapsed into six 
groups. The "Other" category in particular became a catch-all for programs that could not 
be placed into the other five categories. Analyses of Variance (ANOVAs) on most 
variables consistently showed enormous within group variance, which indicates that 
program funding source in general was much less important than the individual political, 


 

0

Appendix D, page 10 

economic and administrative context within the states (a premise born out by the 
subsequent site visits conducted by WID). 

These categories appeared even more tenuous when 1984 and 1988 surveys were 
compared. For example, nine programs had apparently switched funding source between 
1984 and 1988, so these programs could not be included in the 1984 to 1988 comparisons 
by funding source group. In three of these cases, the administrators no longer reported 
Title XX funding as distinct from state funds, in another case TXX funds were not 
distinguished in 1984. It is possible that other programs may be incorrectly categorized, or 
that the categories themselves are not sufficiently defined. 

Eight questionnaires were received which seemed to indicate that the state had 
consolidated a number of programs which had been interviewed separately in 1984. When 
WID visited one of these states, the researchers found that although the state continued to 
have two distinct programs, only one questionnaire had been filled out because the same 
department administered both of the programs. Other questionnaires counted in these 
analyses as a single program may also be aggregate reports of several programs. 

Given these data limitations, the following analyses must be viewed as summaries 
of general trends. The study strongly suggests that funding source category by itself is not 
a valid predictor of specific program features. 


Appendix D, page 11 

I. Program Expenditures Changes 
The two Medicaid funding sources experienced the highest growth in average 
program expenditures between 1984 and 1988 (Table and Figure 1). The Waiver programs 
(which had been relatively small in 1984) grew by an average of over 300%, which 
indicates that these programs are becoming a more entrenched part of many states' service 
delivery systems. PC Option and SSBG programs had the largest expenditures in 1984, 
and this trend was accentuated by 1988 as average expenditures doubled. On an individual 
program basis, the PC-Option option programs grew by an average of $60 million (Table 
and Figure 2). 

On a program by program basis, State and Other program expenditures grew 
slightly. Small new programs added by 1988 account for the decline in average 
expenditures in the group comparisons between 1984 and 1988. Both the decline in 
expenditures in the State funding group and the dramatic increases among the PC-Option 
and Waiver groups indicate a growing tendency of states to move to federal matching 
funds for their PAS. 

Table 1: Comparison of 1984 and 1988 Average Expenditures Per Program by 
Funding Source Group 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver 

Average Annual Expenditures Per Program (in $ millions) 
Year 

1984 
Number of Responses 
35.72 
19 
3.25 
28 
14.24 
31 
7.11 
17 
4.91 
30 
12.14 
13 
11.86 
138 
1988 
Number of Responses 
72.51 
23 
13.39 
29 
27.8722 
6.13 
10 
2.68 
26 
7.99 
10 
24.00 
120 

Average Percentage Change 103% 312% 96% -14% -45% -34% 102% 


• 84 expenditures 
111 88 expenditures 
Appendix D, page 12 
Figure 1: Comparison of 1984 and 1988 Average Expenditures Per Program by 
Funding Source Group 
--,c, 80 - 
o 
E
= 
60 
at 
tap oF. 
0. 1.. 40 - a, o.. 
w, a) 
1-, 
= 
117- 
=
a. a) 20 
x
a.) 
a) 
G5,0 et 
I. a) 
et 0 
pc-option waiver ssbg tiii state other total 
funding source 
Table 2: Magnitude of Growth in Total Program Expenditures Between 1984 and 1988 
by Funding Source Group, in Total Dollars and Corrected for Inflation 
Funding Source TX[X- TXDC- SSBG 1111 State Other Total 
PC Waiver 
number of programs 
number missing 
Program Expenditure Change (in $ millions) 
mean 60.7 8.3 12.5 0.9 0.8 3.1 13.6 
standard deviation 184.2 11.2 42.8 9.8 2.2 4.5 80.1 
high 721.6 45.7 166.5 16.4 5.5 9.7 721.6 
low - 0.7 - 1.0 - 6.5 -16.0 -4.5 -0.5 -106.5 
Program Expenditure Change-corrected for inflation* (in $ millions) 
mean 54.4 7.7 9.0 - 0.1 0.4 2.6 11.4 
standard deviation 168.1 10.4 33.0 10.0 2.3 4.4 73.0 
high 657.5 41.9 127.1 14.4 4.8 9.0 657.5 
low - 4.2 - 1.1 -12.8 -18.5 -6.6 -0.7 -121.5 
15 17 15 7 18 7 88 
2 4 3 2 1 1 18 
* There was a 14% increase in the Consumer Price Index between 1984 and 1988, so corrected figures are in 
1984 dollars

Appendix D, page 13 

Figure 2: Magnitude of Growth in Program Expenditures Between 1984 and 1988 by 
Funding Source, In Total Dollars and Corrected for Inflation 

60 


• $ growth 
lia $ -inflation 
40 


20 


0 

 

pc-option waiver ssbg tiii stateothertotal 

funding source 

II. Program Caseload Changes 
SSBG programs on the average had the largest program caseloads in 1984 and 
1988 (Table and Figure 3), over 300%. The Waiver programs grew on the average by 
over 200%, and the PC-Option programs grew an average of 70%. State caseloads 
declined by 56%. The growth in Medicaid program caseloads and the decline in state 
caseloads offer general confinination of the pattern shown in expenditure data, i.e. that the 
states in this period are attempting to maximize federal dollars. 

As a group, Title III programs declined in caseload size, although one program 
caseload apparently grew by over 160,000. This outlier, combined with the low N, 
accounts for the high average caseload growth among individual Title III programs in Table 
and Figure 4. In general, there was a problem among Title III administrators in identifying 
PAS recipients apart from other service recipients for related programs such as adult day 
care or home-delivered meals, so these figures may not be accurate. 


Appendix D, page 14 

Table 3: Comparison of 1984 and 1988 Average Program Caseloads by Funding 
Source Group 

 

Funding SourceTXIC TXIX- SSBG MI State Other Total 
PC Waiver 

Average Program Caseloads (in thousands) 
Year 

1984 
Number of Responses 
7.77 1.92 9.10 78.89 3.25 3.93 
18 35 32 16 27 12 
13.54 
140 
1988 
Number of Responses 
10.77 5.80 36.58 53.94 1.43 11.00 
22 30 23 6 24 11 
14.92 
116 
Average Percentage Change 39% 202% 302% -14% -56% 143% 10% 

Figure 3: Comparison of 1984 and 1988 Average Program Caseloads by Funding 
Source Group 

80 


• 84 clients 
ES 88 clients 
60 


40 


20 

 


pc-option waiver ssbg tiii state othertotal 

funding source 


Appendix D, page 15 

Table 4: Magnitude of Growth in Program Caseloads Between 1984 and 1988 by 
Funding Source Group 

Funding Source TXIXTXIXSSBG 
1111 State Other Total 
PC Waiver 
number of programs 15 18 17 4 15 7 85 
number missing 2 3 1 5 4 1 21 

Program Caseload Change (in thousands) 
mean 4.3 2.0 2.6 45.4 .7 6.2 1.4 
standard deviation 9.3 4.3 8.1 78.6 1.7 13.1 21.2 
high 26.8 18.7 32.9 163.1 4.8 34.8 34.8 
low -10.2 -.4 -3.0 0.0 -1.0 -1.3 -86.1 

Figure 4: Magnitude of Growth in Program Caseloads Between 1984 and 1988 by 
Funding Source Group 

45 40 
35 
30 
25 
-.. 
20 -. 
15 10 
-. 

5 


0 
pc-option waiver ssbg tiii state other total 

funding source 


Appendix D, page 16 
III. Program Hours Changes 
Total hours of PAS provided in 1988 averaged 5,670,000 per program, compared 
with 5,350,000 hours in 1984. The TXIX-PC and SSBG programs on the average 
provided the most total hours of PAS per program, (Table 5 and Figure 5) but while the 
PC-Option programs provided on the average twice as many hours in 1988 as they did in 
1984, the SSBG programs' hours grew only slightly. Other programs and Waiver 
programs grew by over 200%, while State program hours dropped (which is consistent 
with the overall pattern of down-sizing within this funding source). On a case by case 
basis, the PC-Option and SSBG programs grew the most in total hours of PAS provided 
per program (Table 6 and Figure 6), whereas hours provided per program stayed static or 
dropped slightly with the Waiver, Other, State, and Title III programs. The number of 
programs per group able to provide data on hours was relatively low, so these findings 
may not be representative. 
Table 5: Comparison of 1984 and 1988 Average Total Hours of PAS Provided Per 
Program by Funding Source Group 
Funding Source 
TXIX- TXIX- SSBG 1111 State Other Total 
PC Waiver 
Average Total Hours of PAS (in millions) 
Year 
1984 7.12 .29 13.45 2.40 .21 .30 5.35 
Number of Responses 12 7 15 7 11 6 58 
1988 14.71 1.39 14.46 2.43 .18 .97 5.75 
Number of Responses 11 12 9 4 14 7 57 
Average Percentage Change 107% 379% 8% 1% -14% 223% 7%

Appendix D, page 17 

Figure 5: Comparison of 1984 and 1988 Average Total Hours of PAS Provided Per 
Program by Funding Source Group 

16 


84 total hours 
El 88 total hours 

12 


8


0 
pc-option waiver ssbg tiii state other total 

funding source 

Table 6: Magnitude of Change in Total Program Hours Between 1984 and 1988 by 

Funding Source Group 

Funding Source TXIX-TXIX- SSBG 1111 State Other Total 

PC Waiver 
number of programs 6 2 6 2 6 3 25 
number missing 11 19 12 7 13 5 81 

Change in Total Program Hours (in millions) 

mean 11.6 0.1 7.2 -1.6 0.0 0.0 4.4 
standard deviation 23.5 0.4 18.1 3.0 0.0 0.0 14.5 
high 58.6 0.4 44.1 0.5 0.1 0.1 58.6 
low - .2 -0.1 -1.4 -3.8 0.0 0.0 -3.8 


Appendix D, page 18 

Figure 6: Change in Total Program Hours Between 1984 and 1988 by Funding 
Source Group 

12 


total hours 

10 


8


6


4 

2


0 

-2 
pc-option waiver ssbg tiii state other total 

funding source 

IV. Changes in Service Allocation: Expenditures Per Recipient 
Average expenditures per client rose from $3,220 per person in 1984 to $4,520 per 
person in 1988, but this varied both among and between funding sources (Tables 7 and 8 
and Figures 7 and 8). Because of data limitations, Title III programs were not included in 
these analyses. State and Waiver programs had by far the highest expenditures per client in 
1984 and 1988, and they also experienced the greatest growth in expenditures per client. 
This reinforces the conclusion that these programs appear to be serving people with the 
most severe disabilities. All funding source groups except the PC-Option experienced 
some growth in average expenditures per client, most markedly the SSBG, Waiver and 
Other programs. 

On a case by case basis with individual programs which have data from both survey 
years, these gains appear more modest. The PC-Option programs dropped expenditures 
per client slightly as a group, but the individual programs on a case-by case basis spent an 
average of $500 more per client in 1988 than in 1984. 


Appendix D, page 19 

Hours per client were derived differently in 1985 and 1989. In 1985, total hours 
were divided by total clients, whereas in 1989 administrators were asked to actually 
estimate average hours per client. A comparison between the two surveys is therefore 
inappropriate. 

Table 7: Comparison of 1984 and 1988 Average Annual Program Expenditures Per 
Client by Funding Source Group 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver 

Average Annual Expenditures Per Client (in $ thousands) 
Year 

1984 3.82 4.67 1.49 .25 4.23 1.40 2.87 
Number of Responses 17 25 30 15 27 12 126 
1988 3.86 7.02 2.70 .12 5.02 1.63 4.36 
Number of Responses 22 29 21 5 22 9 108 
Average Percentage Change 1% 50% 81% -52% 19% 16% 52% 

Figure 7: Comparison of 1984 and 1988 Average Annual Program Expenditures Per 
Client by Funding Source Group 

8 

• 84 $/client 
121 88 $/client 
6 

4 

 

pc-option waiver ssbg tiii state othertotal 

funding source 


Appendix D, page 20 

Table 8: Magnitude of Growth in Annual Program Expenditures Per Client Between 
1984 and 1988 by Funding Source 

Funding Source TXDC-TXIX- SSBG 1111 State Other Total 

PC Waiver 
number of programs 14 16 14 3 13 6 69 
number missing 3 5 4 6 6 2 28 

Average Expenditures Per Client Change (in $ thousands) 
mean 0.5 2.8 0.1 0.0 1.8 0.3 1.2 
standard deviation 3.7 3.8 1.0 0.1 3.4 1.4 3.0 
high 6.2 14.1 1.6 0.0 9.8 3.0 14.1 
low -7.8 -0.5 -3.2 -0.2 -1.2 -0.9 -7.8 

Figure 8: Change in Expenditures Per Recipient Between 1984 and 1988 by Funding 
Source Group 

3.0 • 
$/client growth 
2.5 
2.0 1.5 
1.0 
0.5 
0.0 


pc-option waiver ssbg tiii stateothertotal 

funding source 


Appendix D, page 21 

V. Changes in Service Availability: Days and Times PAS Can Be Provided 
Contrasting 1984 and 1988 responses, 22% of the programs which had offered 
services at any time in 1984 had limited the times available by 1988 (Table 9). Except for 
the Title III programs, this decline occurred in all funding groups. These findings may 
indicate a growing tendency among programs to limit services in order to curtail 
expenditure growth, although slight differences in the way the question was asked in 1985 
and 1989 may account for this shift. 

Table 9: Days and Times Service is Available by Funding Source Group 

 

Funding SourceTXIX- TXIX- SSBG TIII State Other Total 
PC Waiver 

 

Number of Programs24 29 24 13 27 12 129 

Percentage of Programs 
Services are Available 24 hrs./day, 7 days/wk. 

No in 84 and 88 12 5 39 100 0 25 23 
Yes in 84 and No in 88 24 33 28 0 16 13 22 
No in 84 and Yes in 88 6 0 0 0 5 0 2 
Yes in 84 and 88 41 52 33 0 68 25 41 
Missing Data 18 10 0 0 11 38 13 

VI. Changes in Service Limits Per Consumer 
There were small increases in total per client service limits; in terms of both hours 
per week, and expenditures per year (Tables 10 and 11), but the low response rates, 
particularly with the hour per week limits, make interpretation questionable. For example, 
the Other programs appear to have increased per client hour allotments dramatically, but 
this is due only to a jump of 15 hours in one of the two programs responding. 

On the average, the PC-Option programs increased service limits by $300 per year. 
The largest increases in annual expenditures per client occurred among the Waiver, State, 
and Other programs. 


Appendix D, page 22 

Table 10: Comparison of 1984 and 1988 Maximum Hours Allowed Per Week Per 
Recipient by Funding Source 

Funding Source TXIX- TXIX- SSBG TILI State Other Total 

PC Waiver 
number of programs 6 0 3 0 8 2 20 
number missing 11 21 15 9 11 6 86 

Change in Maximum Hours Per Client Per Week 
mean -1.0 - 0.7 0.0 7.5 0.8 
standard deviation 1.6 11.0 0.0 10.6 5.5 
high 0.0 10.0 0.0 15.0 15.0 
low -4.0 -12.0 0.0 0.0 -12.0 

Table 11: Change in Maximum Annual Expenditures Per Recipient Between 1984 and 
1988 by Funding Source 

Funding Source TXIX-TXIX- SSBG 1111 State Other Total 

PC Waiver 
number of programs 7 14 8 0 13 4 52 
number missing 10 7 10 9 6 4 54 

Change in Maximum Expenditures Per Client ( in $ thousands) 
mean 0.3 1.9 0.2 1.0 4.1 1.2 
standard deviation 0.4 3.9 0.1 2.2 5.3 2.8 

high 1.0 15.2 0.4 8.1 12.0 15.2 
low 0.0 -0.3 -0.1 0.0 1.0 -0.3 

VII. Changes in Medical Supervision Requirements 
There was no real change in the number of programs requiring an RN or MD to 

supervise some or all PAS tasks. A few programs dropped medical supervision 

requirements between 1984 and 1988, and roughly an equal number added them (Table 

12). Persistent differences remain between the funding groups on this issue. SSBG and 

State programs rarely require medical supervision, while most TXIX-PC, Waiver, 'MI and 

Other programs require medical supervision. 


Appendix D, page 23 

Table 12: Percentage of Programs Which Require Medical Supervision and Changes in 
Medical Supervision Requirements by Funding Source 

Funding Source TXIX-TXIX- SSBG TI1I State Other Total 
PC Waiver 
Number of Programs 17 21 18 9 19 8 106 

Percentage Qf Programs 
Changes Between 1984 and 1988 
No in 84 and 88 0 0 67 0 63 0 27 
Yes in 84 and No in 88 12 14 6 11 11 13 10 
No in 84 and Yes in 88 12 0 11 22 11 0 9 

Yes in 84 and 88 76 71 6 56 5 75 41 
Missing Data 0 14 11 11 11 12 12 

VIII. Changes in Amount of Paramedical Services Provided 
There was no real change in the amount of paramedical services (i.e., medication, 

injections, catheterization, and respiration) an attendant could provide, although there was a 

slight decline in some funding groups, notably the TXIX-PC programs (Table 13), which 

may indicate a reaction to liability concerns. 

Table 13: Change in Number of Paramedical Services Provided between 1984 and 
1988 

Funding Source TXIX- TXIX- SSBG TIE State Other Total 

PC Waiver 
number of programs 17 21 18 9 19 8 106 
number missing 0 0 0 0 0 0 0 

Change in Number Qf Paramedical Services* Provided 
mean -0.3 -0.2 -0.2 0.2 -0.2 0.4 -0.1 
standard deviation 1.4 1.4 1.3 2.0 1.7 0.7 1.5 
high 2.0 4.0 2.0 3.0 4.0 2.0 4.0 

low -4.0 -3.0 -4.0 -4.0 -3.0 0.0 -4.0 

*medication, injections, catheterization, and respiration 


Appendix D, page 24 

IX. Consumer Control Changes 
In the 1985 survey, almost none of the programs which used agency or government 
providers allowed the recipient to hire, fire, pay or train the attendant. The decision was 
therefore made to ask these questions only of programs which used independent providers 
in 1989. Among the programs which used independent providers, there was little 
discernable change in degree of consumer control (Table 14). The consumers in these 
programs were as likely to be able to hire, fire, pay and train their attendants in 1984 as 
they were in 1988, and this did not vary among funding sources. 

Table 14: Degree of Consumer Control for Programs Which Utilize Independent 
Providers by Funding Source 

Funding Source TXIX-TXIX- SSBG TM State Other Total 
PC Waiver 
Number of Programs 17 21 18 9 19 8 106 

Percentage of Programs 
Consumer Can Hire/Fire Attendants 

No in 84 and 88 0 0 6 0 0 0 1 
Yes in 84 and No in 88 0 5 6 11 0 13 4 
No in 84 and Yes in 88 0 5 11 0 0 0 4 
Yes in 84 and 88 41 19 50 0 89 0 41 
Missing Data 59 71 28 89 11 88 51 

Consumer Can Pay Attendants 
No in 84 and 88 29 24 33 11 5 0 20 
Yes in 84 and No in 88 0 5 6 0 5 13 4 
No in 84 and Yes in 88 6 0 11 0 11 0 7 
Yes in 84 and 88 6 0 22 0 63 0 17 
Missing Data 59 71 28 89 16 88 53 

Consumer Can Train Attendants 
No in 84 and 88 2 14 33 0 5 0 11 
Yes in 84 and No in 88 6 10 6 11 5 13 8 
No in 84 and Yes in 88 0 0 11 0 5 0 6 
Yes in 84 and 88 18 5 22 0 68 0 23 
Missing Data 65 71 28 89 16 88 53 


Appendix D, page 25 

X. General Program Policy Changes Since 1984 
Programs reported a number of changes since 1984 (Table 15). The most common 
change in eligibility was an increase in income eligibility (40 programs), followed by some 
other form of liberalized eligibility (27 programs). Twenty-two programs developed some 
sort of functional assessment tool. In terms of consumer control, 13 programs formalized 
grievance procedures, 7 established consumer boards, and 6 established consumer training 
programs. The most common change reported in terms of quality control was establishing 
on-site review of providers (35 programs) and competitive bidding for provider agency 
contracts (10 programs). Twelve programs switched or added provider types. 

Table 15: Program Changes Since 1984 

Number of Programs Percentage of Total 
Implementing Change Programs Responding 

Eligibility Changes 


Increased Maximum Allowable Income Level 40 34% 
Liberalized Eligibility Requirement 27 23% 
Developed Functional Ability Assessment 22 19% 
Established Uniform Assessment Process 14 12% 
Established Minimum Disability Level 8 7% 
Larger Part of the State Can Receive Service 4 3% 
Increased Number of Clients Allowed 1 1% 
Focus on Severe Disability 1 1% 
Lowered Age Eligibility 1 1% 
Improved Assessment 1 1% 


Recipient Control Changes 
Formalized Grievance Procedures 13 11% 
Established Consumer Board 7 6% 


Established Consumer Training Program 6 5% 
Adopted Pennsylvania (Choice) Model 3 3% 


Duality Assurance Changes 
Established On-Site Review of Providers 35 31% 
Established Independent Case Management 11 10% 
Competitive Provider Agency Selection 10 9% 
Established External Quality Assurance Committee 8 7% 
Independent Program Evaluation 8 7% 


Management Information System Changes 
Developed Pilot MIS 2 2% 
Purchased Software 1 1% 


Developed Client Database 1 1% 



Appendix D, page 26 
Table 15, continued: Program Changes Since 1984 
Number of Programs Percentage of Total 
Implementing Change Programs Responding 
Provider Changes 
Changed from IP to Agency Provider 7 6% 
Changed from Agency Provider to IP 4 4% 
Limited or Disallowed Family Providers 2 2% 
Increased Provider Reimbursement Rate 2 2% 
Added Agency Providers 1 1% 
Other Program Changes 
Created or Modified Cost-Sharing Formula 6 5% 
Increased Maximum Expenditures Per Client 5 4% 
Narrowed Scope of Services Offered 2 2% 


Appendix D, page 27 

XI. Programs Contacted in 1984 and/or 1988 
* This Program Switched Funding Source Group Between 1984 and 1988 
** This Program Combined With Other Programs Contacted Separately in 1984 


ID State 88 Funding Source84 Funding Source 
1 WI na other 

-county based program in 1988, no statewide data 
2** * MA waiver state 
combined with 1984 program #94 


3**

MAtxix-pc txix-pc 
combined with 1984 program #93 
4 MA state state 

5 HI txx txx 

6* CT txx state 

7 CT txx txx 
txix-w in some analyses 

8 CT na txix-w 

-defunct 
9 CO txix-w txix-w 
10** MO na txx 

11 MO na txix-w 

-no longer offers PAS 
12 IL txix-w txix-w 
13* IL txix-w state 


Appendix D, page 28 

ID State 88 Funding Source 84 Funding Source 
14 MA na tiii 
16 ID na txix-w 
- defunct 
17 ID txix-w txix-w 
18** ME na state 
19** ME na state 
20 ME na txx 
21 KS txx txx 
22 KS txix-w txix-w 
24 KS na state 
- only residential services now available 
25 AR state state 
26 WI na other 
- defunct 
27 NY txix-pc txix-pc 
28 ID other other 
29 AL txix-w txix-w 
31 WA txx txx 
32* WI state other 
33 WI state state 


Appendix D, page 29 

ID State 88 Funding Source 84 Funding Source 
34** ME state state 

-combined with 1984 programs #18 and #19 
35 AL state state 
36 IA state state 
37 AR txix-pc txix-pc 
38 DE na txx 
39 WA txix-w txix-w 
40 PA txx txx 
41 ME na txix-w 
42 AL state state 
43 NY na txx 
45 NE txix-pc txix-pc 
46* NE state txx 
47 FL txix-w txix-w 
48 DE na other 
49 MI na txix-w 
50** * NH other txx 
-combined with 1984 program #102 
51 NV na txx 


Appendix D, page 30 

ED State 88 Funding Source BL1 Funding Source 
52 PA tiii tiii 
53 PA state state 
54** MO na tiii 
55 AZ other other 
56 HI txix-w txix-w 
57 CA txix-w txix-w 
59 NV txix-pc txix-pc 
60 MN txix-pc txix-pc 
61 MT na txx 
- now only offer protective services 
62 WI na txix-w 
63 NV na tiii 
64 NV state state 
65 MS na state 
67 AK na tiii 
- defunct 
68 AK na txx 
69 AK na state 
70 CA tiii tiii 


Appendix D, page 31 

ID State 88 Funding Source 84 Funding Source 
71 CA txix-w txix-w 
72 CA txx txx 
73 CO tiii tiii 
74 CO state state 
75 CT other other 
76 CT other other 
77** FL na txix-w 
78 FL tiii tiii 
79* FL state txx 
80 FL state state 
81 GA txx txx 
82 HI tiii tiii 
83 IN other other 
84 IN txix-w txix-w 
85 IA other other 
86 KS na tiii 
87 KY txix-w txix-w 


Appendix D, page 32 

ID State 88 Funding Source 84 Funding Source 
88 KY state state 
89 KYna txx 
90 MD txix-pc txix-pc 
91 MD txx txx 
92 MI) state state 
93** MA na txix-pc 
94** MA na txix-w 
95 MI tiii tiii 
96 MN tiii tiii 
97** MO txix-pc txix-pc 

-combined with 1984 programs #10, #54 and #98 
98** MO na txix-w 
99 MO state state 
100 MT na tiii 
101 NE txx txx 
102** NH na tiii 
103 NH txix-pc txix-pc 
104 NH na txix-w 


Appendix D, page 33 

ID State 

105 NM 

106 NM 

107 NM 

108 NM 

109 NY 

110 NY 

-defunct 
111 NY 
112 NY 
113 NC 
114 ND 
115* OH 
116 OH 
117 OH 
118 OH 
119 OH 
120 OH 
121 OK 

88 Funding Source 
txix-w 

txx 
na 

txix-w 
na 
na 

txix-pc 
na 
txx 
txix-w 
other 
na 
na 
state 
na 

txx 

txix-pc 

84 Funding Source 
txix-w 
txx 
txx 
txix-w 
txx 
state 

txix-pc 
tiii 
txx 
txix-w 
tiii 
txix-w 
txix-w 
state 
txx 
txx 
txix-pc 


Appendix D, page 34 

ID State 88 Funding Source 84 Funding Source 

122 OK txx txx 

123 OR txix-pc txix-pc 

124 RI na state 

125 RI state state 

126 S C txix-w txix-w 

127 SD state state 

128 SD state state 

129 TX txix-w txix-w 

130 TX txx txx 

131 TX txix-pc txix-pc 

132 TX tiii tiii 

133 UT na txix-w 

-defunct 
134 UT na state 
135 VT state state 
136* VT state txx 
137 VA txx 


txx 
138 DC txix-pc txix-pc 



Appendix D, page 35 

ID State 88 Funding Source 84 Funding Source 
139 DC txx txx 
140 WI na other 
141* WY other tiii 
142 VA na txix-w 
143 SD txix-pc txix-pc 
144** IN other txx 

-combined with 1984 program 145 
145** IN na tiii 
146 TN tiii tiii 
147 * * MT txix-pc txix-pc 

-combined with 1984 program #149 
148 SC txx txx 
149** MT na txix-w 
150 NM na tiii 
151 RI other other 
152* WV txix-pc txx 
153 NJ txix-w txix-w 
154 NJ txix-pc txix-pc 
155 NJ txix-w txix-w 


Appendix D, page 36 

ID State 88 Funding Source 84 Funding Source 
156 UT txix-pc txix-pc 
157 MI txix-pc txix-pc 
158 MS txx txx 
159 RI txix-w txix-w 

160 NC na txix-w 

-consumers shifted to 1988 program #229 
161 CO other other 
162 GA na txix-w 
163 WV txix-w txix-w 


Appendix D, page 37 

New Programs Contacted Only in 1988 

ID State 
201 NC 
202 OK 
204 WY 
206 DC 
207 VT 
208 VT 
209 AK 
210 AZ 
211 NV 
212 MN 
217 MN 
218 IA 
220 WA 
221 FL 
222 MD 
223 CT 
224 PA 

88 Funding Source 
tiii 
tiii 
state 
tiii 
txix-w 

state 
txix-pc 

state 

txix-w 

txix-w 

txx 

txix-w 

txix-pc 

other 

txix-w 

txix-w 

txx 


Appendix D, page 38 

ID State 88 Funding Source 

225 KY txix-w 

226 ME txix-pc 

229 NC txix-pc 

231 UT txx 

232 TX txx 

233 TX state 

234 UT txx 

235 UT tiii 

236 NV txix-w 


Appendix D, page 39 

Questionnaires Received by Funding Source Group 

Funding 

Source 84 Questionnaires 88 Questionnaires* 
TXIX-PC 
TXIX-W 
TXX 
MI 
State 
Other 
20 
38 
35 
21 
30 
13 
24 
31 
24 
13 
27 
13 
TOTAL 
157 132 

* Includes 9 questionnaires from programs which appear to have switched funding source 
group between 1984 and 1988, 5 questionnaires which each represent two or more 
programs contacted separately in 1984, and 2 questionnaires which appear to have 
switched funding source group and which each represent 2 programs contacted separately 
in 1984. Because of these questionnaires, it is difficult to derive a response rate for each 
funding source group. Approximately three-quarters of the programs contacted in 1984 are 
represented in the 1988 data set. 
Programs Represented by 1988 Questionnaires 

number of 1984 programs new programs 
questionnaires represented by questionnaires: 
from programs the questionaires recieved 

Funding Source surveyed in 1984 recieved** in 1988 only 

TXIX-PC 20 21 4 
TXIX-W 23 28 8 
TXX19 20 5 
TIII9 11 4 
State 23 25 4 
Other 12 12 1 

TOTAL 106 117 26 

** Includes programs contacted separately in 1984 which are represented in one 1988 
questionnaire.