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Systems Change A Workbook for Improving PAS in Your State Understanding Personal Assistance Services (PAS) and the Pocy Options for Changing PAS Devery Systems in the United States PAS Systems Change A Workbook for Improving PAS in Your State This document was made possible in part through the support of National Institute on Disability and Rehabitation Research (NIDRR)grants (#H133B00006-90) and (#H133B970008-98) for the Rehabitation Research and Training Center on Personal Assistance Services (RRTC-PAS) to the World Institute on Disability from the Office of Special Education and Rehabitation Services (OSERS), US Department of Education. World Institute on Disability R RTC- PAS 510 16th Street, Suite 100 Oakland, Cafornia 94612 phone (510) 763-4100 fax (510) 763-4109 web site: www.wid.org e-mail: wid@wid.org Additional copies of this manual are available for purchase. To order please contact WID at (510) 763-4100. March 2000 Introduction 4 Goals for the PAS Workbook 5 Module Five: Introduction 6 Module Six: Evaluating Your PAS System 7 Worksheet B: The Big Picture - Your State PAS System as a Whole 15 Worksheet A: Evaluating PAS in Your State 16 Module Seven: The Ideal PAS System 17 Worksheet C: The Ideal PAS System 18 Resolution on PAS 20 Exemplary Programs 23 Module Eight: A Reaty Check 30 Regulatory Barriers to Independent Providers 31 Medicaid Strengths and Weakneses 34 Worksheet D: Recycle, Reuse, Reduce 37 Worksheet E: Pocy Into Action 39 Worksheet F: PAS Changes Needed in Your State 40 Module Nine: Making It Happen 41 PAS Design Issues 42 Worksheet G: Identifying and Prioritizing Our Strategies 49 Creating a Plan of Action 50 Worksheet H: The Next Steps in our Campaign for PAS Change 51 Bibography 60 Some Useful Web Sites 63 Evaluation 67 What is the PAS Workbook? The goal of this manual is to provide participants with the knowledge and tools necessary to evaluate and (re)design their current state PAS systems as well as to help support individuals or groups who are or wish to become leaders in PAS pocy development. Module Five begins by creating a safe learning space for participants. Module Six offers participants the tools needed to evaluate and assess their current state PAS system. Module Seven invites participants to envision all the components of their ideal PAS system. Module Eight examines PAS design issues, problems and possible solutions and provides participants with factual information on ability issues and Medicaid opportunities. In addition, this module analyzes participants state PAS history for what can be used, restructured or discarded in developing the ideal system. Module Nine enables participants to strategize and begin development of an effective plan of action for (re)designing the ideal PAS system for their state. PAS Systems Change combines data and practical information with hands-on activities to help participants take concrete steps in advocating for PAS change on both a state and national level. The PAS Workbook is designed to help participants collectively design an action plan for PAS pocy and program change in their state. World Institute on Disability Goals for the PAS Workbook Participants will gain the knowledge and skills to enable them to more effectively advocate for PAS pocy changes at a state and national level. By the end of the training, participants will: Assess the strengths and weaknesses of the PAS program(s) in their state. Envision the ideal state PAS system. Identify: essential elements to consider when designing PAS pocies and programs existing gaps between their current system and their ideal state solutions for bridging the gaps between current system and ideal system Generate effective strategies to use for implementing state PAS systems change. Develop an initial plan of action for designing or restructuring current state PAS system. PAS Systems Change 1:1 module five: Introduction to PAS objectives Clarify goals and expectations Review the training methods and schedule Become oriented to the training, trainers and each other overview Welcome Goals and Objectives of Training Overview Training Agenda Housekeeping-Logistics Explanation of Participant Materials Questions and Answers Expectations and Learning Objectives World Institute on Disability module six: Evaluating your PAS System objectives Assess and evaluate current PAS programs in your own state Identify problems that exist in current state PAS system in regards to: availability services provided workforce and ability issues service quaty consumer control overview An Assessment of Current PAS Programs in Your State Problems with PAS in Your State Discussion and Small Group Activity PAS Systems Change Evaluating PAS in Your State Goal To paint a reastic picture of the existing state PAS system in your state by examining the various state PAS programs. Objective To help illuminate what is working and/or not working in your state PAS system as a whole. Use this time to utize the collective knowledge of your group. Use the following worksheet to evaluate the various PAS programs in your state. Check any boxes that apply and provide examples. Break into small groups depending on your famiarity with a certain PAS program or specific disability knowledge. World Institute on Disability Who is Egible? Type of Disability 17 years of age or under 18-59 years old 60-64 years old 65 years of age or older Different breakdown Physical disability/chronic condition (diabetes, congestive heart failure) Mental retardation Other developmental disability (e.g., cerebral palsy, autism, epilepsy) Any form of dementia (including Alzheimer's) Brain injury Psychiatric disability or mental illness Vision Impairment Hearing Impairment HIV/AIDS Dual diagnosis: Mental retardation and mental illness Dual diagnosis: Mental retardation and physical disability Other disability PAS Systems Change Level of Functional mited in Activities of Daily ving (ADLs) on a scale Impairment including ADLs (ADLs/IADLs) mited in Instrumental Activities of Daily ving (IADLs) on a scale including IADLs Functional impairment criteria other than ADLs/IADLs IADL mitations alone (no ADL mitations) Type of Disability At risk of institutionazation Meet Medicaid criteria for nursing home/censed facity care Disabled according to Social Security Administration definition Severe or profound mental retardation Severe and persistent mental illness Other Severity of mited in ADLs on a scale including ADL items Disability mited in IADLs on a scale including ___IADL items At risk of Institutionazation Meets Medicaid criteria for nursing home/censed facity care World Institute on Disability Severity of Disabled according to Social Security Administration definition Disability Severe or profound mental retardation Severe and persistent mental illness Employment, Employed, including self-employment Status Looking for work Unemployed, not looking for work Participant Income Maximum annual income that individuals may have and still be eligible $ should be $ Can disability-related expenses be excluded from a person's income when determining egibity Other Eligibity, living alone Criteria Medicaid recipient or eligible Family unable/unwilng to provide services Physician's order Resident of certain substate geographic area PAS Systems Change el Services: Amount and Availability of PAS Scope of Services Assistance is provided with: Location PAS available: Maximum number of hours of PAS that one person can receive is Per week per month per year Services available 24 hours a day, 7 days a week Maximum payment allowed is Per week,per month, per year Household Tasks Raising Children Personal Routines Communication Paramedical Services Social/Sexual Travel Work Related Cognitive Tasks PAS users home PAS users workplace (outside the home) PAS users school Recreational setting Temporary housing or emergency shelters (e.g., for homeless or domestic violence) Elsewhere in the local community While receiving medical services in a cnic or other outpatient While receiving medical services in a hospital While shopping and doing errands While traveng World Institute on Disability Payment Method U To PAS user who then pays assistant Directly to personal assistant Voucher Other Administrative/ Medicaid PC-Option Funding Source(s) Medicaid Waiver (XIX) Social Services Block Grants (Title XX) Local Funds lState Funds Older Americans Act (Title III) Other Consumer Controls Recruiting, hiring and firing assistants Paying assistants Schedung assistants Medical or nursing supervision is required Peer support and training is available PAS Systems Change Assessment Conducted uniformly throughout the state Conducted by an entity not involved in providing the service Personal Assistants Wages range from $_ to $ Receive benefits (health, sick leave, paid vacation) There is a high turnover of assistants ElWorld Institute on Disability The Big Picture: Your State PAS System as a Whole Your current PAS state system is the sum of all the different PAS programs. The space below has been provided to write down a summary of the findings from the small group evaluations of the various PAS programs in your state. EGIBITY SERVICES LOCATION OF PAS AVAILABLE PAYMENT METHOD PAS Systems Change El ADMINISTRATIVE FUNDING SOURCE(S) CONSUMER CONTROL ASSESSMENT PERSONAL ASSISTANTS World Institute on Disability module sever': The Ideal PAS System objectives Envision the components of the ideal state PAS system Generate a mission statement for ideal state PAS system Recognize and incorporate facets of innovative PAS programs overview Creative Visuazation Group Brainstorm PAS Resolution Examples of Programs Designed to Maximize Recipient Management of Their Own Service PAS Systems Change ICI The Ideal PAS System Brainstorm the components of your ideal state PAS system. This is an opportunity for you to expand the potential for PAS beyond what may seem possible or feasible. Often, in order to create change, we must tear down the existing structure to envision a new one. Dream big — anything goes! You can use the sted categories and/or create your own to write down the components of your ideal system. EGIBITY SERVICES LOCATION PAS AVAILABLE PAYMENT METHOD World Institute on Disability ADMINISTRATIVE FUNDING SOURCE(S) CONSUMER CONTROL ASSESSMENT PERSONAL ASSISTANTS PAS Systems Change Resolution on PAS The following resolution was passed by participants of the International Personal Assistance Services Symposium convened in 1991. You may find the components you envisioned for your ideal state PAS system are very similar to those sted below. E, PEOPLE WITH DISABITIES AND OUR ALES, have come together from across the United States and around the world from September 29-October 1, 1991 in Oakland, Cafornia at the symposium entitled " Empowerment Strategies For The Development Of A Personal Assistance Services System." This conference has focused on personal assistance services as an essential factor in independent ving, which itself encompasses the whole area of human activities, including but not mited to housing, transportation, community access, education, employment, economic security, family fe and interpersonal relationships of choice, leisure and potical influence. Recognizing our unique expertise derived from our experience, we are taking the initiative in the development of pocies that directly affect all people with disabities. People with disabities are entitled to be enabled to achieve the highest possible level of personal functioning and independence through appropriate education, health care, social services and assistive technology, including, as necessary, the assistance of other people. We firmly uphold our basic human and civil rights to full and equal participation in society as called for in the Americans with Disabities Act and the United Nations Universal Declaration of Human Rights. We consider independent ving and the availability of services to be critical to the exercise of our full human and civil rights, responsibities and privileges. To this end, we condemn forced segregation and institutionazation as direct violations of our human rights. Government pocies and funding should not perpetuate the forced segregation, isolation, or institutionazation of people with disabities of any age. The Americans with Disabities Act was passed into law to promote the equazation of opportunity. The passage of comprehensive federal personal assistance legislation is essential to reazing the historic promise of the Act. World Institute on Disability The recommendations of the United Nations World Programme of Action (s 115) specifically state that "Member states should encourage the provision of support services to enable disabled people to ve as independently as possible in the community and in so doing should ensure that persons with a disability have the opportunity to develop and manage these services for themselves." In support of the international movement of disabled people and in Disabled Peoples' International, which has a special commitment to setting up a network of initiatives for personal assistance services as part of the implementation of the equazation of opportunities, we call on governments and pocy makers to assure greater and more equitable access to personal assistance services based on the following principles: PRINCIPLES: 1. Personal assistance services are a human and civil right. These services shall serve people of all ages, from infancy throughout a person's fetime, when the person's functional mitation(s) shall necessitate the services. This right is irrespective of disability, personal health, income, marital and family status and without discrimination on the basis of race, national origin, cultural background, region, gender, sexual preference, or geography. 2. All people with disabities (and their self-designated or legal representatives if appcable) shall be informed about their rights and opinions related to personal assistance services in accessible formats and appropriate languages. All levels of personal assistance services should respect the privacy and confidentiaty of the user. 3. Personal assistance users shall be able to choose from a variety of personal assistance services models which together offer the choice of various degrees of user control. User control, in our view, can be exercised by all people regardless of their ability to give legally informed consent or their need for support in decision making or communication. 4. Services shall enable the users to exercise their rights and to participate in every aspect of socio-cultural fe including, but not mited to, home, school, work, cultural and spiritual activities, leisure, travel and potical fe. These services shall enable disabled people, without penalty, if they so choose, to estabsh a personal, family and community fe and fulfill all the responsibities associated with those aspects of fe. 5. No individual shall be forced into or kept in an institutionazed setting because of lack of resources, high costs, sub-standard or non-existent services or the refusal and/ or denial of any or all services. PAS Systems Change C 6. These services must be available for up to seven days a week for as many hours as needed during the 24-hour period of the day, on long-term, short-term and emergency bases. These services shall include, but are not mited to, assistance with personal bodily functions; communicative, household, mobity, work, emotional, cognitive, personal and financial affairs; community participation; parenting; leisure; and other related needs. The user's point of view must be paramount in the design and devery of services. Users must be able to choose or refuse services. 7. Government funding shall be an individual entitlement independent of marital status and shall not be a disincentive to employment. 8. Government funding must include competitive wages (based on consumer cost experience within the private sector) and employment benefits for assistants and related administrative and management expenses. 9. Payments to the user shall not be treated as disposable, taxable income and shall not make the user ineligible for other statutory benefits or services. 10. Sufficient governmental funding shall be made available to ensure adequate support, outreach, recruitment, counseng, and training for the user and the assistant. Government efforts shall ensure that a pool of quafied, competent assistance shall be available for users to access through a variety of personal assistance services models, including, but not mited to, individual providers and full service agencies. H. The user should be free to select and/or hire as personal assistants whomever s/he chooses, including family members. 12. Children needing personal assistance services shall be offered such services as part of their right to inclusive education as well. Such education and personal assistance services shall include age appropriate opportunities to learn to use and control personal assistance services effectively. 13. There shall be a uniform appeals procedure, which is independent of funders, providers and assessors that is effected in an expeditious manner and allows the appcant/ user to receive advocacy services and legal counsel at the expense of the statutory authority. 14. In furtherance of all of the above, users must be formally and decisively involved and represented at all levels of pocy making through ongoing communication and outreach in planning, implementation, design and development of personal assistance services. World Institute on Disability Exemplary Programs Descriptions of Programs Designed to Maximize Recipient Management of their Own Services. As you begin to design or restructure your current system, it may be useful to refer to these programs as an illustration of what is possible, what exists, and what you might choose to create in your own state. Most of the consumer management oriented programs utize independent or individual providers who are directly hired by the recipient, rather than agency providers who are employed by a private agency. In general, the level of control that recipients have over agency providers is less than they have over individual or independent providers. However, that is not always the case. In particular, Texas consumers have worked hard to institute a consumer controlled homecare agency model. In addition there are models that allow the consumer to choose the type of provider that she/he wants or the type of supports the consumer wants in order to be able to manage an independent provider. PAS Systems Change In Cash and Income Supplement Models INCOME SUPPLEMENT PROGRAMS are PAS programs in which the PAS user receives payment in the mail. The money can be used for purchasing the services needed from any type of provider desired. The advantage of the income support model is that recipients can spend their allowance however they see fit. They can hire family, outsiders or agency providers. They are totally in control of their own services. However there is no oversight of the service, leaving recipients vulnerable to potential neglect or abuse, particularly if they do not seek out training in how to manage their own services. Providers also are not guaranteed benefits or withholding for social security. Below are several examples of pubcly funded PAS programs based upon a cash subsidy to the PAS user. VETERAN'S ADMINISTRATION AIDE AND ATTENDANT ALLOWANCE. The Veterans Administration provides an add-on to disability payments for those people injured in the ne of duty who need PAS. Currently this amounts to approximately $2000 per month over and above disability pay. SI SUPPLEMENT PROGRAMS. There are six states which supplement SSI checks for those needing attendant services. The Colorado Home Care Allowance Program is the most generous. It gives people needing PAS up to $297 per month in addition to their SSI allocation. FAMILY SUPPORT PROGRAMS are another variation of this model. They have developed around the United States for famies with children who have developmental disabities. These programs give famies a certain amount of money which they can spend on whatever they feel is necessary to assist them in raising their disabled child, including respite, PAS, therapies, housing modifications and technology. The Louisiana and Wisconsin Family Support Projects are among the exemplary programs of this genre. iloWorld Institute on Disability Innovative Independent Provider Models CONSUMER TRAINING: The Massachusetts Independent ving Personal Care Program is one of the few in the country that pays for program recipients to be trained in PA management. As part of the program's services recipients receive extensive training in how to manage their attendant and their own health status and how to recognize when they need to seek medical advice. The recipients select their own providers and arrange for back-up and withholding for the providers. The administering agencies, which are primarily ILCs, act as flow through agencies for Medicaid and state funds, perform intake and annual assessments, and provide one-to-one peer support Some feel there is a training for all recipients. Individuals unable to manage their confct of interest own service may designate a surrogate to perform those funcwhen an agency that tions (see below). manages the services SURROGATE MODEL: The Massachusetts Personal Care Attenalso acts in an dant (PCA) program expanded from targeting only people who advocacy role on are "self-directing" to include people who need a surrogate. The ILCs, which managed the program statewide, generally agreed behalf of the to serve people with a "significant other" who could act as "sur- disabled individual. rogate". For people with mental retardation who have no family, paid surrogates are used and these people receive their PCA services through organizations such as UCP and The Arc. Some feel there is a confct of interest when an agency that manages the services also acts in an advocacy role on behalf of the disabled individual. CONSUMER COOPERATIVES: The consumer cooperative model was developed in Sweden by a PAS users cooperative, Stockholm Independent ving (STIL), in the late 1980s. PAS users pool their PAS allotments from the municipaties, which include funds for management. The cooperative then provides services from which people may choose in order to meet their PAS needs, including recruitment, screening, training, and mediation services. The STIL cooperative does not require people to have a physical disability, rather it includes people with cognitive disabities who have a "significant other" to assist them with management tasks. The cooperative is run by people who use the service and is part of a network of PAS Systems Change cooperatives in Sweden providing other services, such as gas stations. Attendants collectively bargain with the cooperative management. An example of the Most of the consumer management oriented pro grams utize independent or individual providers who are directly hired by the recipient, rather than agency provid ers who are employed by a private agency. cooperative arrangement existing in the United States is Concepts of Independence located in New York City. It functions as a homecare agency just ke the 70 other agencies receiving funds from Medicaid to provide PAS in New York City. Once a consumer who needs PAS appes for Medicaid he/she can request to be a member of Concepts. Once the consumer completes a form to confirm his/her ability to manage PAS, she/he becomes a member of Concepts. Concepts, whose board of directors is made up entirely of users of Concepts services, acts as a flow through for Medicaid funds. It does not recruit providers, provide emergency back-up or pay providers. It only provides information and payroll support. Both STIL and Concepts serve people of all ages, though the bulk of participants are working age. SUPPORTED INDEPENDENT PROVIDER (SIP) AND !SOS: Several Cafornia Counties have developed the SIP Model which enables people who are not totally capable of managing their own services to get help from a county worker to do things ke recruit, hire and fire their attendant. The people receiving SIP may be elderly, have mental health problems, or be medically fragile. There is a growing number of programs (e.g., Michigan's Program) that provide this assistance to enable people with mental retardation to use the generic state PAS program. World Institute on Disability Choice Models CASH OR SERVICE PROVISION: Germany has allowed PAS users to choose whether they want to receive cash or services provided and managed by the state. The amount cash recipients receive is less than the cost of the state services, however 80 0/0 of users have chosen cash. The program serves both younger and older adults. U.S. CASH AND COUNSENG DEMONSTRATIONS: Currently, there is increasing interest among the aging and disability communities in models of consumer-directed health care. Among them is "cash and counseng," in which cash allowances, coupled with counselng on managing attendants, are paid directly to disabled persons allowing them to arrange and purchase the services they feel best meet their needs. The Cash and Counseng Program consists of demonstrations and evaluations of programs in four states: Arkansas, Florida, New Jersey, and New York. The purpose of the program is to evaluate, using an experimental design, the impact of permitting consumers to take on the responsibity of managing a cash allowance and arranging their own services. The program is sponsored by The Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services. PRIMARILY HOMECARE AGENCY PROVIDERS WITH INDEPENDENT PROVIDER OPTION: In New York and Ilnois PAS users may choose agency providers or IPs. SINGLE STATE PROGRAM DETERMINING EGIBITY FOR NURSING HOMES AND COMMUNITY SERVICES: In Oregon an individual cannot be placed in a nursing home unless she/he is assessed by the state as unable to stay in the community with PAS or assisted ving. CHOICE OF SUPPORTS (MANAGEMENT CHOICE): The Pennsylvania Attendant Care Program, covering people aged 18 to 59, for many years was the only state administered program which gave consumers a menu of support services to choose from. These include recruitment, screening, supervision, and payroll handng of attendants' payroll. On the county level the program is administered by a local agency, e.g. Independent ving Centers (ILCs), disability-oriented agencies such as United Cerebral Palsy or Jewish Vocational Service, and Home Health Agencies. PAS Systems Change gal These administering agencies give recipients the right to hire, manage, pay and fire their assistant. The program does not accept people who are not "mentally alert". Extensive research on the various provider sites indicates that the degree of consumer control varies from county to county, but not necessarily with the type of provider (The Conservation Company, 1988). For example recipients in the county which provides PAS through a Home Health Agency and in the county providing PAS through the Area Agency on Aging felt they had as much control over their services as recipients served by two out of three of the ILCs. Recipients served by other ILCs actually felt they had very ttle control over their PAS. CUSTOMIZED/PERSONAZED FUNDING: Manitoba Province in Canada developed a demonstration project called Independent Service Brokerage. Services to assist the person with a disability are purchased and controlled directly by the individual. If the individual needs assistance in making decisions regarding needed services and where and how to purchase them, an autonomous community board is estabshed to act as a third party to manage and monitor the disbursement of funds. These boards are often referred to as Circles of Friends or Joshua Committees. Service dollars, regardless of the source(s), are allocated to the person, not to a program or a place. Services can be purchased from individuals, nonprofit agencies or for-profit agencies. A plan, which can cover a wide variety of services, must be submitted to the Province. The individual or a trustee is then accountable to the Province for how the funds are disbursed. Agency Provider Models CONSUMER CONTROL FEATURES: Consumers in Texas have worked over the past few years to develop a demonstration project which allows people to find their own providers, register them with a homecare agency which does all the withholding functions, but allows the consumer to train and supervise their attendant. World Institute on Disability Work Incentive Models CURRENTLY, FOURTEEN STATES HAVE WORK INCENTIVE PROGRAMS which only accept people between ages 18 and 60 who work a specified minimum number of hours per week. These programs generally are administered through State Vocational Rehabitation Agencies using state funds. A notable exception is Massachusetts, where there is a state-subsidized Medicaid buy in. Those not eligible for Medicaid pay a sding-fee scale to enroll in the Medicaid PAS program and the rest of the cost of services is borne by the state. Another exception is Pennsylvania, which uses Social Services Block Grant Funds for their work incentive program. Most of these programs tend to be quite small, generally serving fewer than 100 recipients. Washington state is the major exception, where the Employed Disabled Chore Service Program serves 9,900 people. Wisconsin developed a Medicaid Waiver to do this. The work-oriented programs differ in egibity requirements and services provided. Generally, however, they either have no income mit or have an income, asset and allowable deduction mit generous enough to encourage individuals to work. Most have some sort of sding-fee scale or state-subsidized arrangement to buy-in to existing programs funded by Federal sources, so that recipients pay part of the costs. The programs allow recipients to employ their own providers and usually encourage people to obtain management training through a local ILC. Most have mits on the amount of service available. All provide basic PAS services. Far fewer allow services outside the home or for child rearing tasks. The 1999 Work Incentives Improvement Act gives states the option to allow people on SSDI to buy-in to Medicaid to receive health care and PAS, where it is part of the Medicaid state plan. People on SSI who want to work can receive PAS, health coverage, and other Medicaid state plan services pursuant to section 1619 of the Social Security Act. PAS Systems Change A Reaty Check: Identifying the gaps between the Current PAS system and the Ideal PAS system objectives Comprehend the regulatory issues affecting consumer-directed PAS Understand the strengths and weaknesses of existing Medicaid programs Identify the gaps between current state PAS system and ideal Prioritize the crucial issues/changes needed in designing or restructuring state PAS system overview Regulatory Issues Affecting Consumer-Directed PAS Medicaid Strengths and Weaknesses Revisit state PAS history World Institute on Disability Regulatory Barriers to Independent Providers Many — if not most — PAS users prefer Individual Providers (IPs) over agency providers. Moreover, unit costs for IPs are generally far less than for agency providers. Why, then, hasn't there been a stronger trend toward the use of IPs? The answer es largely in concerns about tort ability and withholding of payroll taxes and restrictions imposed by state nurse practice acts. PAS Systems Change El Tort ability and Payroll Deductions WHEN IPs ARE USED, one issue that arises is, who is the employer? States have generally been loath to take on the role of employer for fear of being held responsible for injuries or other problematic occurrences during the provision of PAS. This fear has persisted despite the evidence that it is greatly overblown, since there have been few — if any — court judgements holding PAS programs able for damages. Another dilemma facing PAS programs which don't want to take on the role of employer is assigning responsibity for withholding payroll deductions, such as FICA, workers' compensation, and unemployment insurance. Holding the PAS user responsible, while theoretically plausible, is unworkable in practice. Similarly, some states have contended that IPs are independent contractors and thus responsible for their own withholding. All but one state have abandoned this position after a series of adverse rungs from the IRS. Several states, however, have found relatively simple ways of resolving the withholding issue: Massachusetts funnels its PAS payments through "fiscal intermediaries," including independent ving centers, which are then responsible for making the requisite payroll deductions. In the late 1970s, the state of Cafornia started withholding payroll taxes itself after declaring that it was the employer for the purpose of withholding only, while the PAS user continues to be the employer for purposes of hiring, firing, and supervision. World Institute on Disability Restrictions Imposed by Nurse Practice Acts AMONG THE TASKS TRADITIONALLY INCLUDED in the definition of PAS are so-called "paramedical" tasks, such as catheterization, injections, and giving medication. Under the nurse practice acts in most states, however, such tasks are considered invasive procedures and therefore may only be performed by paid personnel who are either registered nurses or persons directly supervised by such. (Unpaid family members are almost always exempt from this prohibition.) Since the 1970s, as more programs developed serving younger disabled persons capable of managing their own PAS, the need to circumvent these restrictions became more and more pressing. A variety of solutions has emerged: Kansas exempts its Medicaid waiver program which serves self-direct ing disabled people from the provisions of its nurse practice act. Oregon allows nurses to delegate the tasks in question to personal as sistants. Cafornia PAS users are allowed to take responsibity for such tasks as long as a physician authorizes them to do so. Such successes have not been universal, however. In some states, the nursing profession has prevented the relaxation of nurse practice acts. Consequently, paramedical tasks for people who need them must still be performed by health professionals at a substantially increased cost. PAS Systems Change Medicaid — Strengths and Weaknesses ALL 50 STATES ARE REQUIRED TO PROVIDE a certain set of services, including hospitazation, physician visits, home health services, and nursing home services. These services must be made available to, among others, all the "bnd, disabled and aged" people who meet a particular state's income egibity criteria. THE PRIMARY SOURCE OF FEDERAL FUNDING for PAS in the U.S. is currently Medicaid (Title XIX of the Social Security Act), which provides healthcare for poor people in all 50 states and the District of Columbia. Each state administers its Medicaid program under a certain amount of federal guidance. Costs are spt between federal and state governments, with the federal contribution varying between 50 0/0 (for wealthy states, such as Cafornia) and 80 0/0 (for the poorest states, such as Mississippi). INCOME EGIBITY MITS are, with a few exceptions (for example, the income mit for nursing home care is federally mandated to be 300 0/o of the poverty level) left to the discretion of the state. These mits range from less than 40 0/0 of the poverty level in some states to over 1000/o in Alaska, where the cost of ving is high. IN ADDITION to the mandatory services mentioned above, states may choose to provide a number of "optional" services, such as prescription drugs, chiropractic, vision care, and, of prime importance to people with significant levels of disability, "personal care." Currently, somewhere between 26 and 32 states offer personal care as part of their Medicaid program, making it an entitlement. A SECOND VEHICLE for providing PAS under Medicaid is the Home and Community-Based Services Waiver program (commonly known as Medicaid Waivers) under which states can develop demonstration programs providing services in the home and community to mited populations who are eligible to enter nursing homes and institutions. States have great freedom in defining the services provided under waivers. However, the cost of serving a population in the community under a waiver must be no greater than the cost of institutionazation. Additionally, waivers must be renewed every three years, which can be a cumbersome process. It should be borne in mind that Medicaid funding for institutional long-term services far exceed the combined total for the Personal Care Option and the Waivers. MWorld Institute on Disability Medicaid Personal Care Option Strengths No waiting sts; everyone who meets the state's egibity mits has to be served. The definition of what constitutes personal care is left entirely to the state. States can use independent providers and/or agency providers. Medical supervision is not required. Services must be available "statewide." Weaknesses Since the Personal Care Option is an entitlement, states cannot expcitly mit the number of people served. They resort to other strategies to mit costs, such as putting restrictions on income, functional level, diagnoses served, types of services available and amount of service hours (or expenditures) an individual may receive. (For example, people needing 24 hours of service can receive them in only five states.) Few states provide services outside the home, even though federal regulations allow it. The designation of which family members can be paid is left to the states. PAS Systems Change In Medicaid Home and Community-Based Waivers Strengths A very broad range of services, going far beyond what is available in the regular Medicaid state plan, can be provided, if needed, to keep someone out of an institution—such as assistive technology, paramedical services, and housing modifications. States can provide services to people not eligible for the regular Medicaid pro gram, e.g. those with incomes as high as 300% of poverty (institutional finan cial egibity). States can mit the number of people served and, therefore, better control their costs. States can provide enough hours of service to people with significant levels of disability so that they can remain safely in the community. States can use independent providers and/or agency providers. Services may be provided outside the home. Weaknesses The number of people a waiver accepts can be mited and waiting sts are allowed. Often the waivers in a state are administered and managed separately, thereby dupcating effort. The waiver appcation process is cumbersome. The waivers are restricted to those who would otherwise be in an institution. The requirement that waivers be cost-neutral skews services in two ways: People who receive PAS from family members are not considered at risk of institutionazation, so they are not eligible for services. Since the cost of institutionazation of developmentally disabled people is generally several times that of institutionazing people with other disabities, the service packages in waivers serving developmentally disabled people are often much richer than in other waivers. World Institute on Disability Recycle, Reuse, Reduce Reexamining your state's PAS history — what can you let go of, use and/or modify to create your ideal PAS system? The goal of this section is to begin bridging the gap between your ideal PAS system and the one you've got. This will be accompshed by reviewing your state's PAS history and identifying the programs and the initiatives that are no longer useful, need some modification to be useful and/or still work. Below is space to write down a summary of the group's findings. Not Useful Needs ModificationStill Works Recycle, Reuse, Reduce Not Useful Needs ModificationStill Works Pocy Into Action It is important to identify, reach consensus on and prioritize the critical issues facing PAS users in your state. The more specific you can be when identifying these issues the better prepared you will be to create a viable plan of action. The Five Most Critical Issues for PAS Users Are: I. 2. 3. 4. 5. PAS Systems Change PAS Changes Needed in Your State Some pocy and program changes may be necessary to enhance and expand PAS in your state. Specifically, this may involve changing pocies that create disincentives, allowing more flexibity and choice for consumers, increasing funding for PAS, expanding egibity, creating sding fee schedules, relaxing restrictions caused by nurse practice acts, increasing wages and providing benefits for assistants, etc. What are the most important changes needed in your PAS pocies and programs? 2. 3. 4. 5. World Institute on Disability module nine: Making It Happen objectives Identify the issues to consider when designing a pubcly funded PAS devery system Generate effective strategies for instituting state PAS systems change Develop an initial plan of action for designing or restructuring current state PAS system Identify resources overview PAS Design Issues, Problems, and Solutions Strategies Designing the PAS System You Want in Your State: Pocy Into Action PAS Systems Change PAS Design Issues: Problems and Possible Solutions Following are some of the many issues to consider when designing your own PAS devery system, including: Eligibity Assessment Service mitations 4 Workforce Issues ability Issues Service Quaty Til Consumer Control and Peer Support Long Term Service Utization and Coordination Outreach 11:IWorld Institute on Disability 1. PROGRAM ACCESS AND EGIBITY CRITERIA Who will the PAS program serve? Are there restrictions regarding: Ages Types of disability Level of disability Income/resource egibity Are children eligible as well as adults? Is PAS available to people on the basis of functional need? Does the program serve people with physical, cognitive, psychiatric, and sensory impairments? Are there income and resource tests for egibity? Is PAS only available to people with incomes at or below the poverty level or for people who meet income and resource egibity for SSI? Are there disincentives to employment, marriage and child rearing? 2. ASSESSMENT Uniform across counties Separate from provider Takes setting into account Are assessments provided uniformly across all regions of the state? Is the provider of services also conducting the assessment for the consumer's services? Are the assessments being conducted in the PAS users' homes? PAS Systems Change CI 3. SCOPE OF SERVICES AVAILABLE What range of services is provided? What time are services available? Are there mits on service location? Are there service mits in hours or money? RANGE OF SERVICES PROVIDED: Does the program mit the types of tasks that assistants can perform in response to the needs of an individual? Can program participants get assistance with personal services/routines? Household tasks? Paramedical services?Travel? Communication? Cognitive assistance? Child raising tasks and activities? Is cueing and standby assistance available for people with psychiatric disabities or mental retardation? Are management services available if needed and requested? DOES THE PROGRAM PROVIDE participants with training and support in how to employ, train and supervise assistants, and in how to budget for and manage their personal assistance system? Is case management/support coordination available to people who want and need assistance in utizing a range of community services that will maximize their ability to ve in the community? TIMES SERVICES ARE AVAILABLE: Is the assistance available at whatever time of day or night the PAS user requires it or is it mited to only certain hours of the day? LOCATION OF SERVICES: Are there mits on the location in which the participant can get necessary assistance? Is the assistance available in the home and outside the home? Can assistants help the person at work? At school? To travel? To participate in community fe? Some people mistakenly beeve that Medicaid allows assistance to be provided only in the home to people who are "homebound." TOTAL HOURS OF SERVICE: Are there mits (in terms of hours or money) on the total amount of services that a participant can use? Is 24-hour-a-day assistance available, if needed? CIWorld Institute on Disability 4. WORKFORCE ISSUES Provider modes - Agency, Government, Independent Provider, Family Payment systems - Voucher, Direct Pay, SS1 Supplements Wages and benefits for assistants High turnover of assistants WHAT PROVIDER MODES ARE AVAILABLE: Agency workers? Government employees? Independent providers? Can family members be hired as personal assistants? Are spouses and parents of disabled children the only family members ineligible to be employed as independent providers? WHO PAYS THE WORKER? Can PAS users receive vouchers for personal assistance? Can they receive money to directly pay their workers? Are the workers paid by the state or county? Who is the "employer" of record? Who does withholding for taxes, workers' comp, unemployment insurance? WAGES AND BENEFITS: Who is involved in advocating for and negotiating wages and benefits? HIGH TURNOVER OF ASSISTANTS: High turnover seems directly related to wages and benefits for work. Can PAS users play a role in advocating for and insuring decent wages and benefits for their personal assistants? PAS Systems Change 5. REGULATORY ISSUES Tort ability Payroll deductions Restrictions imposed by nurse practice acts TAX ability: Government and private agency providers perceive the risk of injury to consumers as quite high, although the lack of reported tigation suggests that the risk is quite modest (Sabatino, C. and tvak, S., 1995). How does your PAS program deal with the issue of personal injury ability? PAYROLL DEDUCTIONS: Is withholding done of income taxes, social security payments, federal and state unemployment insurance, and workers' compensation for independent providers? If so, is it done by consumers? agency providers? the state? or a designated fiscal intermediary? RESTRICTIONS IMPOSED BY NURSE PRACTICE ACTS: The key issue here is whether these state laws allow or prohibit uncensed personal assistants from performing tasks which are considered paramedical even though they are widely regarded as a normal part of PAS. One major ability issue for nurses or doctors in delegating nursing functions is the extent to which the nurse or doctor is able for the acts of the delegatee. One question then is: what is the role of nurses and nurse practice acts regarding "nursing services" tasks or paramedical services performed by uncensed personal assistants? This issue has been addressed in several states in ways which do not increase ability. SERVICE QUATY ISSUES: The issue here is whether the potential for abuse by personal assistants can be reduced without sacrificing consumer control. In other words, are "ensuring a low incidence of negative outcomes" and "achieving a high degree of social and economic independence" mutually exclusive objectives? Administrative oversight (from "above") Consumer directed quaty assurance (from "below") World Institute on Disability ADMINISTRATIVE OVERSIGHT often involves ttle consumer participation in evaluation of services provided. It can take the form of: The state setting up compance standards Paper reviews of agencies Nurse supervisors conducting "spot checks" The agency conducting worker screening and training 6. CONSUMER DIRECTED QUATY ASSURANCE Consumer directed quaty assurance requires that PAS users participate in the evaluation of the services and workers. Elements of consumer directed quaty assurance include: Consumer training Availability of formal or informal peer support The estabshment and utization of appeal and grievance procedures Availability of ombudsmen to monitor the PAS program Governance opportunities: PAS users and family members have right to survey consumers and conduct hearings to evaluate participant satisfaction with PAS program 7. CONSUMER CONTROL AND PEER SUPPORT CONSUMER/PAS USER CHOICE: Participants have the option of deciding how much direct control they want to exercise over their PAS in regards to: Hiring, training, supervising and terminating assistants Paying assistants Schedung assistants and assigning their duties IS TRAINING AVAILABLE to PAS users in how to employ, manage, train assistants? Does the program provide an effective way to mediate confcts and disputes between consumers and assistants? Is this service available to PAS users and workers? PEER SUPPORT Management Skills Peer Advice to PAS Systems Change 8. LONG TERM SERVICE UTIZATION AND COORDINATION For consumers who want or need assistance in utizing the long term care services available, is help utizing and coordinating these services a program option for PAS users? Can program participants get assistance? Across different PAS programs in the same state? Across the long term service spectrum (institutions, healthcare services, etc.)? 9. OUTREACH Adequate Inclusive Culturally relevant IS THE PAS PROGRAM BEING ADEQUATELY ADVERTISED? Are people in all parts of the state being informed about the existence of the program via pubc service announcements on radio and television, print media and pubcations, flyers in the community, etc? Is the program being advertised in rural as well as urban areas of the state? Are advertisements and flyers being produced in languages that reflect the diversity of the state's population? Are outreach campaigns being conducted by representatives of minority communities in the state? Is PAS being explained in ways that are culturally meaningful to people with disabities from all ethnic communities? World Institute on Disability Identifying and Prioritizing Our Strategies The goal is to create your ideal state PAS system. The mission statement for this PAS system is: SHORT TERM STRATEGIES LONG TERM STRATEGIES PAS Systems Change Creating a Plan of Action The purpose of this section is to help you identify a viable plan to accompsh your stated objectives. There are many components involved in developing an action plan. It is imperative to get very specific about your goals and objectives, as well as to reach a consensus. Below are some important guidenes to keep in mind when creating a plan of action: 1. Manageable and Measurable objectives 2. Plan for accompshing set objectives 3. Individuals or teams to take ownership of and accompsh these objectives 4. Reastic timenes for accompshing set objectives 5. System to evaluate that the objectives have been satisfactorily met Ideas for Possible Strategies n Connect with other advocates n Form local and statewide PAS action groups n Get involved in the implementation of the Olmstead decision n Rate your state's PAS programs n Invite and seek out media attention n Organize letter-writing campaigns a ADAPT demonstrations; participate in ADAPT's "Real Choice" Campaign n Get involved in the implementation of WIIA n Survey candidates running for office n Meet with legislators n Get people involved and educated including: PAS users, other people with disabities, family members, community supporters of independent ving, civic leaders, poticians, etc. n Persist World Institute on Disability The Next Steps in Our Campaign for PAS Change I.1 GOAL a. b. ACTION STEPS TIME NE c. d. 2 . a. b. c. d. -3• a. b. c. d. -4• a. b. c. d. -5• a. b. n= c. d. The Next Steps in Our Campaign for PAS Change GOAL ACTION STEPS TIME NE 6. a. b. c. d. 7 . a. b. c. d. 8. a. b. c. d. 9• a. b. c. d. Jo. a. b. c. d. People Who Will Coordinate This Effort Name Address Phone/TDD Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Fax Email PAS Systems Changeel People To Contact Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email Name Address Phone/TDD Fax Email INWorld Institute on Disability Who Are Our Ales When Advocating for PAS? Name Address Organization Phone/TDD Fax/ Email Remarks Name Address Organization Phone/TDD Fax/ Email Remarks Name Address Organization Phone/TDD Fax/ Email Remarks Name Address Organization Phone/TDD Fax/ Email Remarks PAS Systems Change IIII Potical Ales (State and local elected officials, potical leaders, etc.) Name Department Position Address Organization Phone/TDD Fax Email Remarks Name Department Position Address Organization Phone/TDD Fax Email Remarks Name Department Position Address Organization Phone/TDD Fax Email Remarks World Institute on Disability Administrative Ales (State and local program administrators, members of DD councils, SILC members, etc.) Name Department Position Address Organization Phone/TDD Fax Email Remarks Name Department Position Address Organization Phone/TDD Fax Email Remarks Name Department Position Address Organization Phone/TDD Fax Email Remarks PAS Systems Changer" 58 World Institute on Disability 59 PAS Systems Change Personal Assistance Services (1998). American Rehabitation. (Vol. 24(3 Et 4)). Washington, DC: Rehabitation Services Administration. *Ng • Arno, P. S., Levine, C., Et Memmott, M. M. (1999). The economic value of informal caregiving. Health Affairs, 18(2), 182-8. Batavia, A. I., DeJong, G., Et McKnew, L. B. (1991). Toward a national personal 0.•nn assistance program: the independent ving model of long-term care for persons with disabities [see comments]. Health Pot Pocy Law, 16(3), 523-45. *IA • Beatty, P. W., Richmond, G. W., Tepper, S., Et DeJong, G. (1998). Personal assistance for people with physical disabities: consumer-direction and satisfaction with services. Arch Phys Med Rehabil, 79(6), 674-7. Benjamin, A., Et Doty, P. (1998). Who's in Charge? Who Gets Paid? A Study of Models for Organizing Supportive Services at Home. Los Angeles, CA: UCLA. Bruen, B., Wiener, J., Kim, J., Et Miazad, 0. (1999). State usage of Medicaid coverage options for aged, bnd, and disabled people. Washington DC: The Urban Institute. Burwell, B. (1999). Medicaid long term care expenditures in FY 1998: The MEDSTAT Group. Cameron, K., Pagoyda, R., Nadash, P., Mahoney, K., Simon-Rusinowitz, L., a tvak, S. (1997). Cash and Counseng Technical Analysis: The Counseng Component. Washington, DC: National Council on the Aging. Dautel, P., Et Frieden, L. (1999). Consumer Choice and Control: Personal Attendant Services and Supports in America. Report of the National Blue Ribbon Panel on Personal Assistance Services. Houston: Independent ving Research Utization Program. Doty, P., Kasper, J., a tvak, S. (1996). Consumer-directed models of personal care: Lessons from Medicaid. Millbank Quarterly, 74(3), 377-409. Flanagan, S. (1994). Consumer-Directed Attendant Services: How States Address Tax, Legal and Quaty Assurance Issues. Cambridge: Systemetrics. Gckman, L. L., Stocker, K. B., Et Caro, F. G. (1997). Self-direction in home care for older people: a consumer's perspective. Home Health Care Sery Q, 16(1-2), 41 54. 6o World Institute on Disability Harrington, C., LaPlante, M., Newcomer, R., Bedney, B., Shostak, S., Summers, P., Weinberg, J., a Basnett, I. (1998). A Review of Federal Statutes and Regulations for Personal Care and Home and Community Based Services: A Final Report. San Francisco: Department of Social a Behavioral Sciences University of Cafornia, San Francisco. Horvath, J. (1997). Medicaid financial egibity for aged, bnd and disabled. A survey of state use of selected options. Portland, ME: National Academy for State Health Pocy. Kane, R. A. (1995). Expanding the home care concept: blurring distinctions among home care, institutional care, and other long-term-care services. Millbank Q 73(2), 161-86. Kassner, E., a Wilams, L. (1997). Taking care of their own: State-funded home and community-based care programs for older persons. Washington DC: American Association of Retired Persons. Kaye, H. (1997). Disability Watch: The status of people with disabities in the United States. Volcano, CA: Disability Rights Advocates, Inc. tvak, S., a Kennedy, J. (1991). Pocy Options Affecting the Medicaid Personal Care Services Optional Benefit: Appendices A through D. Oakland: World Institute on Disability. Miller, N. A. (1992). Medicaid 2176 home and community-based care waivers: the first ten years. Health Affairs, 11(4), 162-71. Miller, N., Ramsland, S., a Harrington, C. (1999). Trends and issues in the Medicaid 1915(c) waiver program. Health care financing review. Nadash, P., a Flanagan, S. (1996). The Massachusetts Medicaid Personal Care Attendant (PCA) Program: Impcations for Cash and Counseng. Washington, DC: National Institute on Consumer-Directed Long Term Services National Council on the Aging. National Institute on Consumer-Directed Long Term Services a The Independent Choices Grants Program. (1999). Consumer Choice News (Vol. 4, ). Washington DC: National Council on Aging. National Institute on Consumer-Directed Long Term Services. Cash and counseng technical analysis: The counseng component. Washington, DC: The National Council on the Aging, Inc. a The World Institute on Disability. PAS Systems Change Prince, J. M., Manley, M. S., Et Whiteneck, G. G. (1995). Self-managed versus agency-provided personal assistance care for individuals with high level tetraplegia. Arch Phys Med Rehabil, 76(10), 919-23. Richmond, G., Beatty, P., Tepper, S., Et DeJong, G. (1997). The effect of consumer- directed personal assistance services on the productivity outcomes of people with disabities. Journal of rehabitation outcomes measurement, 1(4), 48-51. Scala, M. A., Mayberry, P. S., Et Kunkel, S. R. (1996). Consumer-directed home care: cent profiles and service challenges. Case Manag, 5(3), 91-8. Scala, M., Et Mayberry, P. (1997). Consumer-Directed Home Services: Issues and Models. Oxford, Ohio: Ohio Long Term Care Research Project, Scripps Gerontology Center, Miami University. United States General Accounting Office. (1999). Adults with severe disabities: Federal and state approaches for personal care and other services. Report to Congressional requesters. Washington DC: GAO. USGAO. Medicaid long term care: Successful state efforts to expand home services while miting costs. (GAO/HEHS-94-167). Washington, DC: United States General Accounting Office. USGAO. (1999). Adults with severe disabities: Federal and state approaches for personal care and other services. (GAO/HEHS-99-101): United States General Accounting Office. Vivona, V., Dresen, J., Et tvak, S. (1999). Exemplary Consumer Directed Personal Assistance Services (PAS) Programs for People with Physical and/or Cognitive Disabities. Oakland, CA: World Institute on Disability. Wagner, D., Nadash, P., Et Sabatino, C. (1997). Autonomy or Abandonment: Changing Perspectives on Abandonment. Washington: National Institute on Consumer- Directed Long-Term Services, National Council on the Aging. Wiener, J., Et Stevenson, D. Long term care for the elderly: Profiles of thirteen states. Washington, DC: The Urban Institute. Wiener, J., Et Stevenson, D. Repeal of the "Boren Amendment": Impcations for quaty of care in nursing homes. (Number A-30 in series: New Federasm: Issues and Options for States). Washington, DC: The Urban Institute. World Institute on Disability GENERAL INTEREST WID's web site http://www.wid.org The National Institute on Disability and Rehabitation Research http://www.ed.gov/offices/OSERS/NIDRR/ The Assistant Secretary for Planning and Evaluation. Part of HHS with a great deal of research about long term care services. http://aspe.hhs.gov/ The Health Care Financing Administration. The federal agency that manages Medicare and Medicaid. http://www.hcfa.gov/ 1997 State Data Book on Long Term Care Program and Market Characteristics http://www.hcfa.gov/medicaid/97stdabk.pdf Home page for the Administration on Aging http://www.aoa.dhhs.gov/default.htm Home page for the Administration on Developmental Disabities http://www.mncdd.org/ Home page of the ARC of the United States HTTP://TheArc.org/ The ARC's self-determination project National Center for Directed Services (part of Counsel on Aging) HTTP://TheArc.org/sdet/sdet.htmlhttp://ncoa.org/consumerdirect/ consumer_direct.htm Consumer Choice News http://ncoa.org/consumerdirect/pubs/index.htm American Association of People with Disabities http://www.aapd-dc.org National Council Independent ving http://www.ncil.org PAS Systems Change ADVOCACY American Disabled For Attendant Programs Today http://www.adapt.org/ MadNation — "People working together for social justice and human rights in mental health." http://www.madnation.org/index.htm Everything about advocacy http://www.empowermentzone.com/ ABOUT EVALUATION "Practical Evaluation of Pubc Health Programs" http://www.cdc.gov/phtn/Pract-Eval/workbook.htm "The Program Manager's Guide to Evaluation" http://wwwz.acf.dhhs.gov/programs/hsb/core/dox/progman.html ABOUT OLMSTEAD The Bazelon Center's extensive information about the Olmstead case. http://www.bazelon.org/olmstead.html Eleventh circuit court Olmstead opinion. http://www.law.emory.edu/circuit/apr98/97-8538.man.html National Association of Protection and Advocacy page deang with Olmstead. http://www.protectionandadvocacy.com/lcolmste.html World Institute on Disability ABOUT PAS The Independent ving Research Utization Center's information about and nks to PAS services. http://www.ilru.org/pas/index.html Consumer Choice And Control: Personal Attendant Services And Supports In America, The Report of the National Blue Ribbon Panel on Personal Assistance Services http://www.ilru.org/pas/BRPPAS.htm User's Manual for PAS from the disability Resource Center http://www.wa-ilsc.org/toczack.html UCLA and ASPE's report comparing consumer satisfaction with consumer directed versus professional managed attendants in Cafornia. http://aspe.hhs.gov/daltcp/reports/ihss.htm Report from Mathematica and ASPE titled "The Role of Home and Community- Based Services in Meeting the Health Care Needs of People with AIDS." http://aspe.hhs.gov/daltcp/reports/aidsfrpt.htm Tells about the work of the San Francisco Pubc Authority, a quasi governmental agent with authority to perform collective bargaining with unionized Independent Providers http://www.infocareu.com/sfpa/ The American Association of Retired Persons pages on caregiving http://www.aarp.org/caregive/home.html The manuscript "Trends in Medicaid Long Term Care Spending" http://www.aarp.org/caregive/home.html The manuscript "New Directions for State Long Term Care Systems" http://research.aarp.org/health/98o9_tateltc.pdf The National Alance for Caregiving http://www.caregiving.org/defaultasp PAS Systems Change "Family Caregiving in the US: Findings From a National Survey, Final Report." http://www.caregiving.org/content/reports/finalreport.pdf Information about the Cash and Counseng Demonstration Project http://www.inform.umd.edu/EdRes/Colleges/HLHP/AGING/CCDemo/ or http:// ncoa.org/ news/archives/cash_and_counseng.htm National Association of Protection and Advocacy home page OrA http://www.protectionandadvocacy.com/ World Institute on Disability Evaluation Your feedback about this training is an invaluable assessment tool. Please complete and return this form to the trainer. Comments are appreciated. Please use the back of this form if you need additional space. Please rate the following sessions of the training: 5 (excellent) 4 (good) 3 (average) 2 (fair) 1 (poor) Please comment on the reason for the rating. PAS Fundamentals Please circle Please comment Introduction 5 4 3 2 I Understanding PAS 5 4 3 2 I Who Uses PAS and How is it Funded? 5 4 3 2 I Diversity of PAS 5 4 3 2 I PAS Workbook Introduction 2 I 54 3 Evaluating your PAS System 5 4 3 2 I Designing the PAS System you Want 5 4 3 2 I Pocy into Action 5 4 3 2 I Wrap up 54 3 2I General Accessibity of Training 2 I 54 3 Training Manuals/Materials 5 4 3 2 I Networking Opportunities 5 4 3 2 I Organization of Training 2 I 54 3 PAS Systems Change Evaluation of Overall Training Were the objectives of the training clearly expressed? Yes No Please explain Were the objectives of the training met? Yes No Please explain Did the training meet your expectations? Yes No Please explain Which aspects/modules of the training were the most beneficial? Which aspects/modules of the training were the least beneficial? What specific recommendations or comments do you have for the World Institute on Disability to improve future trainings? What further information or training would you find beneficial? Would you recommend this training? Yes No 68 World Institute on Disability Evaluation of Facitators Were the facitators well prepared? YesNo Please explain Were the facitators well organized? Yes No Please explain Did the facitators answer questions sufficiently? Yes No Please explain Were the facitators knowledgeable about the subject matter? Yes No Please explain Were the facitators interactive and engaged? Yes No Please explain Specifically, what skills have you gained from this training? PAS Systems Change 70 World Institute on Disability