File contents

Fundamentals 

History, Structure, Utilization and Adequacy of 
Existing PAS Systems 

Understanding Personal Assistance Services (PAS) 
and the Policy. Options for Changing 
PAS Delivery Systems in the United States 



PAS Fundamentals 

History, Structure, Utilization and Adequacy of Existing PAS Systems 

This document was made possible in part through the support of National Institute on Disability 

and Rehabilitation Research (NIDRR) grants (#H133B00006-90) and (#H133B970008-98) for 

the Rehabilitation Research and Training Center on Personal Assistance Services (RRTC-PAS) to 

the World Institute on Disability from the Office of Special Education and Rehabilitation Services 

(OSERS), US Department of Education. 

World Institute on Disability 
R RTC- PAS 
510 16th Street, Suite 100 
Oakland, California 94612 
phone (510) 763-4100 
fax (510) 763-4109 
web site: www.wid.org 
email: wid@wid.org 

Additional copies of this manual are available for purchase. To order please contact WID at 

(510) 763-4100. 
March 2000 

The PAS manuals were made possible by the following people. 
Our gratitude and thanks to: 

Simi Litvak for her commitment to expanding and improving PAS over the 
past 15 years and for developing the first PAS lectures. 

Bill Bruckner for designing the first PAS manual and training in 1995• 

Elissa Berrol for editing, formatting and updating the PAS manuals and 
designing the current PAS trainings. 

The Staff at WID, especially the RRTC-PAS staff Dr. Tom Bleecker, Dr. Linda 
Mona, Hale Zukas, Karyl Eckels, and Merrie Snead. 

The Disability Movement, whose dedication, work and experience has contributed 
enormously to our understanding of the PAS system in the U.S. 


Forward 5 
Introduction 12 
Goals for PAS Fundamentals 13 

Module One: Introduction 14 

Module Two: Understanding PAS 15 
Worksheet A: Exploring PAS 16 
Worksheet B: Defining Personal Assistance Services (PAS) 17 
The Six Components of PAS 18 
A Little History Worth Knowing 20 
Worksheet C: What I Know About the History of PAS 25 

Module Three: Who Uses PAS? How is PAS Funded? 26 

Three Models of PAS for Persons with Disabilities 27 
The Question of Consumer Management 28 
Effectiveness Criteria 29 
Funding Sources for PAS 32 
Current Trends in PAS Usage and Availability 35 

Module Four: PAS — A National Perspective 38 
The Eight Dimensions of Variance 39 
PAS on the National Agenda 44 
An Update on National Initiatives 47 
What Do We Know About PAS in our own State? 52 

Conclusion 53 


The World Institute on Disability is a nonprofit public policy center 
dedicated to the promotion of independence and full inclusion in society 
of people with disabilities. Founded in 1983 by leaders of the Independent 
Living/Civil Rights Movement for people with disabilities, WID is committed 
to bringing policy into action. 

Over the past 13 years, WID has earned an excellent reputation for 
high quality research and public education on a wide range of issues that 
impact people with disabilities. VVID's board and staff includes experts in the 
fields of public policy, research, law, nonprofit management, education, training, 
development, and business. Over half of the board and staff are people 
with varying types of disabilities which enables WID to bring a cross-disability 
perspective to the policy arena. VVID's innovative personnel policies are 
national models of affordable reasonable accommodation for people with 
disabilities, including personal assistance, adaptive technology, flexible work 
scheduling and telecommuting options. 

WID has drafted model legislation on personal assistance services 
and is now educating legislators at the state and federal level about its significance. 
WID is committed to the principles of unity and collaboration among 
people with diverse disabilities, backgrounds and cultures. 


Personal Assistance Services (PAS) Division 

The overall objective of this Division is to further our understanding of how 
personal assistance services (PAS) systems design can better promote the economic 
self-sufficiency, independent living, and full integration of people of all ages and 
with all types of disabilities into society. 

This is being accomplished by exploring models of PAS for independent living for the 
diverse population of people who need PAS, the assistance of another person in 
performing daily tasks. A major focus of the PAS Division is on promoting consumer-
directed services and providing consumer choice. 

WID began to apply Independent Living philosophy to policy issues surrounding disability, 
long-term care and quality of life in the early 1980s. Since that time, WID 
has been at the forefront of research and training in the field of PAS policy, and has 
developed an internationally respected team of experts under the PAS Division. 

On the local, state, national and international levels, WID has been working with 
people across the full spectrum of disability groups and cultural backgrounds to 
develop models of service delivery which meet the needs of consumers and communities. 


Largely because of Win work, the aging community and the federal government 
are showing an increased interest in consumer-directed PAS (i.e., persons with disabilities 
having responsibility to direct their PAS versus these services being administered 
by an outside agency). Since 1987 WID has published a series of research 
studies which have focused on key policy questions. 

World Institute on Disability 


The Role of the Rehabilitation Research And Training 
Center on PAS (RRTC-PAS) 

For a person with a disability, a personal assistant can make the difference 
between living in the community and institutionalization. Personal Assistance Services 
are both a human and a civil right. The RRTC's goal is to explore how PAS can 
promote the economic self-sufficiency, independent living, and full integration of 
people with disabilities into society. A major focus of the RRTC is the exploration of 
PAS models that enhance consumer control and choice. 

WID is currently conducting the following research: 

The Fourth State-of-the States National Survey of PAS Programs — describing 
program characteristics and examining the extent to which services are 
consumer-directed; 
 
The Cost-Effectiveness Study — exploring the relationships among PAS program 
variables, consumer variables and consumer outcomes; 
The Policy Study — investigating innovations in PAS policy across the country; 
The Worksite PAS Study — exploring models of PAS in the workplace as well 
as obtaining information about consumers who utilize worksite PAS; and 
The Qualified Workforce Study — exploring ways to increase the quality and 
supply of the PAS independent provider workforce. 

As far as training is concerned, WID has a unique relationship with the disability 
advocacy community. Our extensive network ensures that research we conduct will 
further policy goals relevant to the needs of the disability community. Training, dissemination, 
and information and referral services arising from our research findings 
are aimed at diverse audiences, including: consumers, advocates, service providers, 
corporations, and policy makers. 

PAS Fundamentals 


The Problem 

PAS policy at the national, state and local level has a profound impact on individual 

PAS users and on the ability of rehabilitation professionals to realize gains for their 

significantly disabled clients. Like many disability services in the US today, PAS faces 

a peculiar dilemma. The new realities of the composition, demands and ideology of 

the disability population are not well served by a delivery system which is no longer 

suited to these new realities. The PAS system has developed as the disability popula


tion has changed substantially, the population is aging, creating a large pool of 

people with disabilities who are older, though recent data shows the size of the 

disabled population that is over age 65 is, and will continue to be, smaller than 

anticipated (Manton, 1998). In addition, due to improvements in medical technol


ogy, people with much more significant disabilities — whether acquired at birth, or 

as a result of work, recreation or war injuries — are surviving longer. 

Many problems remain with the PAS system. The system is a patchwork quilt that 

has holes in it and doesn't quite cover all those it might. Two of the major problems 

which remain have received attention by Congress in the last period: 1) Penalties for 

work, marriage and scholastic achievement and 2) Wide variation in proportion of 

PAS-users served in public programs across the states. 

Other major problems that exist are: 

 
the absence of adequate training or "counseling" for new PAS users, including 
those in transition from school to work 
 
the absence of emergency back-up services 
 
a dearth of personal assistance providers 
the lack of understanding of the nature of abuse experienced by PAS users 
and the successful methods that consumers use to counteract that abuse 
the lower participation rates by people of color in PAS programs. 
World Institute on Disability 


These latter issues have not yet been addressed by federal policy makers, but there 
are several state and local initiatives, demonstrations, and research projects aimed 
at finding ways to solve these problems. 

Achievements 

The PAS system has achieved much to date. From a service available in only a 
handful of states it has evolved so that there are PAS services in every state. More 
and more new people are being served. Since 1993 and the creation of the Health 
Care Reform Task Force, policy makers have recognized PAS as an issue affecting 
people of all ages and disabilities. (Health Security Act, 1993). 

Consumer direction and control has become a viable option. Studies of consumer-
directed services and the cost of various models, legal analyses of liability, as well as 
demonstrations of consumer driven models among people of all ages in several states 
and in Europe show that many consumers prefer PAS that allow them to be in control 
and that such programs are legally and economically feasible (Egley, 1994; 
Sabatino and Litvak, 1996; Beatty, 1998; Benjamin, 1998; Reiff, 1996; Cameron, K.A. 
Et Firman, J.P., 1995). 

There is a growing awareness that PAS can be essential to one's ability to work. Due 
to the 1992 Rehabilitation Act Amendments, vocational counselors must include 
PAS in individual work and rehabilitation plans so that clients and counselors begin 
to plan for PAS needs before closure. Recent research suggests that there is an increase 
in work and community engagement when one has PAS (Richmond, G.W., 
Beatty, P., Tepper, S. Et DeJong, G., 1997; Nosek, M., Fuhrer, M. Et Potter, C., (1995); 

Kimmich, 1991.) 

 

PAS Fundamentals 


Why Conduct Training in PAS Policy Development and 
Advocacy? 

Personal Assistance Services are key services for people with disabilities. "Personal 
Assistance" involves a person(s) assisting someone with a disability in performing 
tasks aimed at maintaining well-being, personal appearance, comfort, safety and 
interactions within the community and society as a whole. Practically speaking, 
personal assistance tasks are those that individuals would perform themselves if 
they did not have a disability. 

The need for community-based PAS for independent living and the lack of a nationwide 
policy direction and mechanism for meeting that need has become a significant 
issue for disabled people of all ages who feel these services are critical to their 
ability to be in control of their lives. Along with people who are disabled and their 
families, advocates, legislators and social policy makers throughout the United States 
and abroad have placed PAS at home and in the community on the global agenda. 

People of all ages and with all types of disabilities — physical, sensory, developmental, 
cognitive, and psychiatric — benefit from personal assistance services. Not having 
this assistance is a major barrier to full participation for many persons with 
disabilities (Louis Harris a Associates, 1986). 

This training in PAS policy development and advocacy is being conducted to provide 
people with disabilities, parents and other family members, public policy developers, 

administrators of programs and services with: 

An understanding of the history and diversity of PAS systems throughout the 
United States. 
A comprehensive framework for understanding PAS policy at both the national 
and state levels. 
Tools to effectively advocate for and implement PAS systems change on a 
state level. 


World Institute on Disability 


Who Should Attend this Training? 

This training is intended to help participants define PAS and to provide them 
with a comprehensive framework for understanding PAS policy on both a state and 
national level. The goals of this training are furthered by the participation of people 
who represent diverse perspectives and interests in the community. 

This training is designed for: 

People who want to gain a greater understanding of PAS on a local and 
national level. 
People who already have an understanding of PAS and want to become more 
knowledgeable about the choices and possibilities for effecting PAS systems 
change. 

State program administrators and policy makers who wish to deepen their 
understanding of PAS and participate in restructuring or developing the PAS 
system in their state. 
WID's goal is to make this training accessible to constituents of all ages, ethnicity, 
disability, communities (rural and urban), affiliations, and perspectives. 

PAS Fundamentals 


 

What is the PAS Fundamentals Manual? 

The goal of this manual is to provide straightforward information about the 
history, structure, utilization and adequacy of existing PAS systems. The purpose 
is to help prepare and support individuals or groups who are or want to become 

leaders in local, state and national efforts in PAS policy development. 



This manual is divided into four separate modules that work together to create a 
comprehensive framework for understanding PAS policy at both the national
and state level. 

Module One begins with introductions, goals and expectations to help create a 
safe learning space for participants. 


Module Two helps participants expand their definition of PAS and explores the
elements, history and importance of PAS for people with disabilities. 

Module Three provides participants with information about different PAS delivery 
models and data on national PAS trends. It also explores the different funding 
sources for PAS. 

Module Four addresses the diversity of PAS programs throughout the United 

States and explores the impact of recently enacted and proposed PAS legislation 

and litigation. The module concludes by exploring PAS on local levels. 

PAS Fundamentals combines both data and practical information with hands 

on activities to help participants understand the complex history and issues of 

PAS policy and delivery. Ideally, this manual and training will help participants 

build the necessary foundation from which they can begin to design and/or restructure 
their ideal state PAS system. 

1:11World Institute on Disability 


Goals for PAS Fundamentals 

Participants will gain a firm understanding of the history, structure, utilization and adequacy of 
existing PAS systems, and the tools to enable them to more effectively advocate for PAS policy 
change at a state and national level. 
By the end of the training, participants will: 


Define PAS and describe the components of personal assistance services. 

Understand the history of PAS in the United States and articulate why PAS is the corner


stone of the Independent Living Movement. 

Identify current dimensions of PAS from a national perspective, including: 

models of PAS 
usage 
availability 
funding sources for publicly-financed PAS 
current advocacy efforts being undertaken nationally 
Recognize the tremendous diversity of PAS programs throughout the United States. 
Create a solid foundation of knowledge on PAS policy on both a state and national level 
from which participants can envision PAS systems change. 

 

PAS Fundamentals 


module one 

objectives 

Review the training goals, methods and agenda 
Become oriented to training, trainers, and each other 
Clarify expectations 
Create a comfortable learning environment 



World Institute on Disability 

overview 

Welcome 
Goals and Objectives of Training 
Overview Training Agenda 
Housekeeping - Logistics 
Explanation of Participant Materials 
Questions and Answers 
Expectations and Learning Objectives 


module tvvc): understanding PAS 


objectives 

Define PAS 
Describe the full spectrum of PAS components 
Become familiar with the history of PAS locally and nationally 

overview 

Definition of PAS 

Exploration of the Components of PAS 

A Little History Worth Knowing 

 

PAS Fundamentals 


Exploring PAS Taking it Personally 

The purpose of this worksheet is to explore and expand our conception of PAS. The tasks a 
PAS user requires assistance with may vary depending both on their disability and lifestyle. 
Our goal is to generate and discuss the diverse and multiple tasks that fall under PAS. 

What are Personal Assistance Services? 

With what activities do you, or someone you know, receive assistance? 

Who provides you, or someone you know, with assistance? 

With which activities would you, or someone you know, like to receive assistance that you 
are not currently? 

World Institute on Disability 


Defining Personal Assistance Services (PAS) 

Personal Assistance involves a person assisting someone with a disability to perform 
tasks aimed at maintaining well-being, personal appearance, comfort, safety and interactions 
within the community and society as a whole. For people with mental retardation, 
these services have sometimes been called "supported living" or "independent living" services. 


PAS was a term developed by the National Council on Disability as a way of countering the 
image of people with disabilities being "taken care of or "attended to." The term "care" 
implies that the disabled person passively receives the ministrations of the attendant. 

The following services and tasks further define PAS: 

PAS Fundamentals 


The Six Components of PAS 


1. ATTENDANT SERVICES 
A. Personal Services 
ambulation (getting around) 
bathing or showering 
grooming 
toileting 
feeding 
grooming and oral hygiene 
skin care 
menstrual care 
using the toilet 
positioning for sex 
mobility tasks: 
getting in and out of bed 
transferring in and out of a 
wheelchair 
wheelchair travel 
assistance with child care 

B. Paramedical Services 
oral medications 
respiration 
maintaining and applying prosthesis 
range of motion 
foot care 
injections 
catheter care 
bowel and bladder care 
operating/routine maintenance of 
breathing equipment 

C. Household Tasks 
shopping 
meal preparation and clean-up 
light cleaning 
heavy cleaning 
laundry 
yardwork 
assist consumers with parenting 
tasks 
simple household maintenance and 
repairs 
physical assistance with paying bills 

2. COMMUNICATION SERVICES 
reading 
interpreting 
writing 
using communication and telecommunication 
equipment 
World Institute on Disability 



3. COGNITIVE/EMOTIONAL 
SUPPORT SERVICES 
defining or scheduling household 
tasks 
planning meals, making shopping lists 
budgeting and paying bills 
personal or family decision-making 
plan parenting approaches 
problem-solving or advocacy (community) 
social network development or support 
support with personal relationships 
reminders for medication 
safety in dangerous situations 

4. PAS MANAGEMENT SERVICES Related to personal assistants: 
interviewing 
hiring 
training 
supervising 
paying 
firing 
quality monitoring 

5. TRANSPORTATION SERVICES 
escort 
driving 

6. WORK RELATED SERVICES 
personal services while at work 
(eating, using the toilet) 
job specific tasks 
using the phone 
filing 
picking up dropped items 
computer 
reading mail 




PAS Fundamentals 


A Little History Worth Knowing: PAS in the USA 


Before 
1950 

1950s 


1960s 


No formal PAS programs exist. 

Occasionally local welfare departments send housekeepers out to assist 
individuals with a disability and families in distress. 

People who need assistance but can't afford to pay for it receive assistance 
from relatives or neighbors, or go into institutions. 

A handful of states establish the first formal PAS programs. 

O Programs provide backup support to families assisting older relatives, 
as in Oklahoma. 


Programs targeted at people aged 18-64 (particularly polio survivors), 
as in California. 

Medicaid established in 1965. 
Under Medicaid federal matching funds and oversight is provided for 
state-run health care programs for the poor. 

"Personal care" is one of the services states are allowed (but not required) 
to provide under Medicaid. 
Oklahoma is the first state to take advantage of this option. 

New York state follows and soon accounts for over 75 0/0 of all "personal 
care option" monies expended by the federal Medicaid program. 
 
California provides PAS to eligible persons by adding a supplement to 
their monthly "Aid to the Totally Disabled" checks. 
20 

World Institute on Disability 


 

1950 1960 1970 1980 1990

 
The Independent Living (IL) Movement is born in California (the loca1970s 
tion of one of the first and largest PAS programs). 
IL founders recognize that PAS is crucial to living independently. 
IL founders advocate for increasing the availability of PAS following 
the consumer-directed model rather than the medical 
model. 
Due to IL Movement pressure, a few PAS programs, using only state 
funds, are developed for people who work and therefore earn too much 
to qualify for Medicaid-funded PAS programs. 

Often these programs are developed with heavy involvement of the 
state vocational rehabilitation agency (e.g., in Massachusetts, Illinois, 
and Ohio). 

Generally, program participants pay for their PAS on a sliding fee 
scale based on their income, from which disability expenses have 
been excluded. 
Title III of the Older American's Act is enacted. 

Targets older people whose income and/or assets exceed the eligibility 
limits for getting PAS through Medicaid. 
Although it covers a very wide and varied number of services 
older people can use in order to remain in the community, it is 
never well funded. 

PAS Fundamentals 


1990

1950 1960 1970 

1981: Congress enacts Section 1619 of the Social Security Act, which

1980s 

allows people on SSI to return to work and still maintain their Medicaid 
benefits (which include PAS in at least 10 states). 

1983: Congress creates Home and Community-Based Services waivers 
(otherwise known as Medicaid waivers). 

States can use waivers to provide a variety of services (including 
PAS) under Medicaid to specific populations or geographic areas. 

By 1989, there is at least one waiver program in every state. 

Groups covered by various waivers include aged and disabled people, 
people with HIV, people with developmental disabilities, disabled 
children, people with brain injury and those with high medical needs. 

Waiting lists may be allowed, since waiver programs, unlike the 

PC option, are not an entitlement. 
1986: "Toward Independence," published by the National Council on 
the Handicapped (now NCD), frames PAS as a cross-disability issue. 

World Institute on Disability 


1950 1960 1970 1980 




1990: The Americans with Disabilities Act (ADA) is enacted.

1990s

Only addresses personal assistance in passing as a reasonable accommodation. 


Does not require entities to provide "services of a personal nature.
Efforts to put PAS on national agenda and make PAS legislation a 
cross-disability and cross-age issue gather momentum. 

1991: Resolution on PAS is adopted internationally by PAS users at 
WID-sponsored symposium on PAS. 
1992: "Recommended Federal Policy Directions on PAS for Americans 
with Disabilities" issued by the Consortium for Citizens with Disabilities 
(CCD), a key cross-disability lobbying group. 

1993: Clinton Health Care reform task force adopts many of the above 
concepts relating to PAS consumer choice and control into its proposal. 


The Work Incentives Improvement Act allows PAS users leaving the 
SSDI rolls in order to work to receive PAS through Medicaid. 

Focus of PAS advocates at ADAPT's initiative becomes reducing the 
institutional bias in Medicaid long-term services. 

1997: The Community Attendant Services Act (CASA) is introduced in 
Congress. 
23 

PAS Fundamentals 


950 1960 1970 1980. 


Late 1999: The Medicaid Community Attendant Services and Supports

1990s 

Act (MiCASSA), an expanded version of CASA is introduced in the 
Senate. 

1999: Olmstead vs L.0 — a momentous decision in which the U.S Su


preme Court holds that the ADA's integration mandate applies to the 

delivery of long-term services. 

Court rules that failing to provide services in the community and 
thereby forcing someone into an institution may constitute a form 
of discrimination prohibited by the ADA. 

The Court requires each state to have a "comprehensive, effective 
working plan for placing [people with disabilities] in less restrictive 
settings [than an institution]. 

24 

World Institute on Disability 


What I Know About the History of PAS in My State 

The purpose of this worksheet is to record any information you have about PAS efforts in 
your state. This worksheet can be used in the future to explore which PAS efforts are or not 
useful and which may need to be restructured to create the PAS system you want. 

Before 195os: 

1950S: 

1960s: 

1970S: 

1980S: 

1990S: 

 25 

PAS Fundamentals 


module three: Who uses PAS? How is PAS fur-idea? 


objectives 

Identify the strengths and weaknesses of different PAS models 
Assess exemplary characteristics of PAS programs 
Recognize current PAS trends 
Identify the different funding sources for PAS 

overview 

Three Models of PAS 
Consumer Management — Fact vs. Fiction 
Exemplary PAS Program Features 
Who Uses PAS? A National Perspective 
PAS Funding Sources 

26 

World Institute on Disability 


Three Models of PAS for Persons with Disabilities 

Below is a general breakdown of how most PAS users receive services. Underlying each model is a unique philosophy and history. It is useful to 

examine the impact and effectiveness of each model and to understand its implications for self direction and choice. 
Historically, most PAS Programs evolved from the medical model, which, in essence, holds that disability is an affliction to be cured, like any 
disease. All aspects of disability, including PAS, are thus considered to be under the purview of the medical profession. The underlying belief is 
that being "functionally" able-bodied is the desired goal and thus persons with disabilities are best served by having medical professionals direct 
their PAS. 

Until relatively recently the Family Model was the only "model" for providing PAS; there was simply no source of assistance for people with 

disabilities other than their families. The view is still widely held that the responsibility for providing assistance lies with the family. 
Lastly, The Independent Living Model — derived from the disability rights movement — views the goal not as eradicating a person's disability, but 
as enabling the person to take charge of all aspects of their life, including their PAS, to participate in society to the degree they choose. 

The question before us is which aspects of these models are beneficial or detrimental and to whom. To help identify the strengths and weaknesses 
of each model, we have asked specific questions. 

IMPORTANT DISTINCTIONS 
BETWEEN PAS MODELS 
MEDICAL MODEL FAMILY MODEL IL MODEL 
1. Who directs services? Provider Direction Family Direction PAS User Direction 
2. Plan of treatment? Physician Plan of Treatment No Physician Plan of Treatment No Physician Plan of Treatment 
3. Nurse supervision? Nurse Supervision No Nurse Supervision No Nurse Supervision 
4. Who provides PAS? Aide Provides PAS Family/Friends Provide PAS Determined by Consumer 
5. Who trains assistant? Aide Trained by Provider No Formal Training Assistant Trained by PAS User 
6. Payment received by? Payment to Provider No Payment PAS User Pays Assistant 
7. Who is accountable? Provider is Accountable Little Accountability PAS User is Accountable 
8. PAS user role? Patient Dependent PAS User 
9. Policy maker view of PAS? Health Care Benefit No Government Benefit Social Service Benefit 


The Question of Consumer Management 
Relative to Size of Consumer Population 


This chart reflects what percentage of PAS users are willing and able or unwilling and unable to 
manage their own services; not necessarily if they want to manage or have the opportunity to 
manage them. It is important to remember that just because things are done in a certain way in 
a certain place, does not mean it is the most useful or beneficial to a PAS user. You may 
be receiving services from a particular model that doesn't match your willingness 
or ability to use that model. 

REQUIRE 
PROFESSIONAL 
OVERSIGHT 


PREFER AGENCY-MANAGED 
SERVICES 


UNABLE/UNWILLING TO MANAGE 
CERTAIN ASPECTS OF SERVICE 


ABLE/WILLING TO MANAGE 
OWN SERVICES WITH TRAINING 


ABLE/WILLING 
TO MANAGE 
OWN SERVICES 
This chart is a reminder not to make IMMEDIATELY assumptions about what all people 
with disabilities want or need. In spe-cific regard to the IL model, there are 
divergent levels of PAS management pref-erence and ability. PAS users need to be 
able to chose the method that works best for them. In many states, the PAS delivery model 
is driven by funding, not necessarily a reflection of what constituents want or need. In California 
for example, almost all of the PAS users in the IHSS program which serves over 200,000 people, 
receive services from Individual Providers (IP's) that the consumer hires. However, IHSS has learned 
that there are some people who need extra support to function well using an IP. 


World Institute on Disability 


Effectiveness Criteria 

The Exemplary Programs were chosen by a panel of judges who based their nominations on 
the following three criteria: Adequacy of Services, Consumer Choice and Consumer Satisfaction. 


1. With respect to ADEQUACY OF SERVICES, to what degree do these best programs incorporate: 
Provision of services to people of all ages, disabilities and ethnicities. 
• Availability of comprehensive needs assessment. 
Coverage for overnight, weekends, emergencies, and respite. 
• A comprehensive menu of services (provision of personal care, household chores, support 
for social/recreational activities, facilitation for appointments such as physician visits). 
Sufficient hours to meet personal goals. 
Optional ancillary services such as payment processing or providing assistant registry. 


2. With respect to CONSUMER CHOICE, to what degree do these best programs allow 
consumers to have effective input into: 
• Clarifying consumer rights (development of self-advocacy skills). 
Training consumers in assistant management. 
• Choice as to what kind of services are delivered, where, when, and by whom. 
Developing their individual Personal Assistant Service plan. 
a Program policies. 


3. With respect to CONSUMER SATISFACTION to what degree do these best programs assess: 
• Consumer satisfaction with personal assistants. 
Consumer satisfaction with life activities support. 
PAS Fundamentals 


Exemplary PAS Programs for People with Cognitive Disabilities 

 

PROGRAM 

Michigan Habilitation 
Supports Waiver 
Lansing, Michigan 

Midland Supported 
Community Living 
Midland, Michigan 

Onondaga 
Community Living 
Syracuse, New York 

Options in 
Community Living 
Madison, Wisconsin 

Training Toward 
Self-Reliance 
Sacramento, California 

FEATURES 

Person centered planning 
Allows for consumer direction of services 
Services available 24 hours/day 
Provides supports to enable utilization of Michigan Home Help Program 
Respite allowed in home of friend/relative chosen by consumer 
Provides services across age within statewide, generic PAS system 
Person centered planning 
Networking of services (agencies) 
Choice of degree of consumer control 
Activates personal network to support consumer's individual goals 
Serves small numbers of people with comprehensive services 
In transition from providing residential group care to individualized community living supports 
Provides services across age groups 
One agency provides all services 
Zero exclusion of consumers 
Assists people to pursue their own choices 
Team provides services 
External program evaluation 
Consumer centered approach (develops personal support program around the individual's needs) 

Flexibility in providing services 
Administers consumer satisfaction surveys 
Provides individualized training to consumers in managing their personal 
assistance generally received through large, statewide In Home 
Supportive Services (IHSS) program 


Provides supports in all settings; serves parents with disabilities 


Offers personal planning and assistance with developing circles of support 



Consumer and customer based program evaluation 

World Institute on Disability 


Exemplary PAS Programs for People with Physical Disabilities 

 


PROGRAM 

California In Home 
Supportive Services 
(IHSS) Program 

Massachusetts 
Personal Care 
Attendant Program 

Cerebral Palsy of the South 
Shore Options, Taunton, MA 

Massachusetts Personal 
Care Attendant Program 

Northeast Independent Living 
Program, Lawrence, MA 

Oregon Senior And 
Disabled Services 

Vermont Attendant 
Services Program 

Wisconsin Community 
Options Program 
(COP) 

FEATURES 


Comprehensive needs assessment 


Wide range of services 


Serves large number of individuals across age 


Consumers choose attendant 


Consumer input on policy 


Serves self- and non-self directing consumers in same program 


Allows "surrogates" to manage PAS for consumers who cannot 


Medicaid pays for PAS management training 

 
Enables consumers to transition from institutions to community 


Provides services for unique consumer needs 

Does a "mock" assessment with consumers to prepare them for actual 
assessment 


Team develops service plan 


Strong consumer control and cross-disability services 


Commitment to community empowerment 


Services for people with Psychiatric Disabilities 


Program provides management skills training to all recipients 

 
Comprehensive needs assessment and wide range of services 


Serves large number of individuals across age 


Consumers choose attendant and consumer input on policy 


Live-in attendants provide 24-hour services as needed 

Program pays for PAS outside the state of Vermont for up to six weeks 
per year 
Program will increase the number of PAS hours for individuals during 
post hospitalization recovery period 
Program will pay personal assistant for up to 30 days when consumer is 
hospitalized 


Serves large number of individuals 


Provides services to persons all ages, all disabilities 

Services provided in all settings 
Supplements other PAS programs to serve people not covered by other 
PAS programs or provide unusual services 

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Funding Sources for PAS 

If we are to understand and impact the PAS system locally and/or nationally, it is imperative to 
be aware of the diverse funding sources. There are three branches of PAS funding: 

 

FEDERAL STATE PRIVATE 

A. Federal Funding Sources 
There are several federal sources for funding PAS: 

1. Medicaid 
2. Medicare 
3. Social Service Block Grants 
4. Title III of the Older Americans Act 
5. The Veteran's Administration 
6. Vocational Rehabilitation. Medicaid is the largest source. 
1. Medicaid (Title XIX) There are two ways that Medicaid provides funds for PAS, either 
through the Medicaid Personal Care Option (PC-Option) or through Medicaid Waivers. 
However, the bulk of Medicaid long-term services funds are allocated towards institutional 
and nursing home care. In addition, there are now a few states which are managing 
and integrating Medicaid primary, secondary and long-term services together. For example, 
in Arizona government entities manage the long-term services and contract out 
the primary and secondary health care services to local managed care organizations. States 
have to contribute their share of state dollars to the program in order to receive the Federal 
funds. 
n The Medicaid PC-Option programs, in the aggregate, serve the largest number of 
people in the country, with over 450,000 people receiving PC-Option services in 
1998-99. Also, in states which have PC-Option programs, these tend to be the largest 
source of paid PAS. States have the option to include personal care services in 
their state Medicaid plans, consequently the PC-Optional programs are entitlement 
programs and have no waiting lists. However, many of the states limit the amount 
of service individuals can receive through the program. Of the thirty-two states 
that have a PC-Option program, five serve only children, while the rest serve people 
of all ages and disabilities. In six states the PC-Option is the only source of paid 
PAS. All PC-Option programs are limited to people at or below the poverty level. 

World Institute on Disability 


n The Medicaid Waiver Programs — also known as the Home- and Community-
Based Services (HCBS) Waivers — serve only 200,000 people. They are intended 
to be an alternative to nursing homes for limited groups of people who are 
significantly disabled. Waiver programs tend to have higher income eligibility 
limits than PC-Option programs. Waiver programs generally offer a wide variety 
of services both in and out of the home and have more generous service 
allowances. They tend to be very medically supervised and use agency providers. 
One problem with the waivers is that they are time-limited, thus states 
must go through the time-consuming process of reapplying every three years. 

2. Medicare (Title XVIII) Theoretically, Medicare only funds short-term use of PAS 
for people receiving Medicare home health treatment. In practice, few people rely on 
Medicare for PAS. 
3. Social Services Block Grants (Title XX) These programs tend to be very large. One 
problem associated with SSBGs is that their amount is fixed; moreover it has remained 
fixed at virtually the same level for decades. Consequently, any increase in 
program costs is borne entirely by the states. Partly because there are almost no 
federal strings attached, SSBG-funded PAS programs vary enormously from state to 
state, so it is difficult to categorize them. They run the gamut from the medical model 
to the most independent living-oriented of all programs, Pennsylvania's Attendant 
Care Program. 
4. Older Americans Act (Title III) Very few Older Americans Act programs around 
the U.S. actually provide PAS. While Title III is, on paper, one of the most flexible of 
federal programs covering PAS , it has historically been funded at very low levels, 
and thus has not been a major source of PAS. 
Title III programs tend to serve those who need very few hours of service. It is targeted 
toward people who cannot meet the low income limits of the Medicaid and 
SSBG programs, but have difficulty in paying for services out-of-pocket. These programs 
are only for people over 60 years old. 

5. Veterans' Administration The Veteran's Administration provides PAS through two 
different programs. The "Aid and Attendance Allowance" is furnished to veterans in 
addition to their monthly compensations for disability incurred in the line of duty. 
Veterans can receive as much as $2,000 per month for their personal assistance service 
needs. The Veteran's Administration also provides a much smaller PAS allowance 
for veterans disabled by age or in non-active duty situations. 
6. Vocational Rehabilitation In some states Vocational Rehabilitation funds have been 
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PAS Fundamentals 


used to pay for PAS for some clients of Vocational Rehabilitation. These funds have 
been provided to PAS users for very short and temporary periods. There is also a very 
small number of states that have used Rehab monies to provide PAS to working people. 

B. State Funded Programs 
During the late 1970s and 1980s a number of states created PAS programs funded 
solely by state funds. There are about 35 such programs and 12 of them are specifically 
targeted to people who work. These programs are the most likely to encourage 
consumer control, provide paramedical services, use independent providers, and allow 
PAS providers to go to the workplace. The state-funded programs have wide 
variations in income and eligibility requirements, and most have no limit on the 
amount of assets a person could have and still be eligible to receive PAS through the 
program. The state funded programs are often aimed at groups of people ineligible for 
federally funded programs. The state-funded programs frequently have long waiting 
lists and are subject to reduction or elimination by the states during periods of cost 
cutting or fiscal crisis. 

C. Private Funding Sources for PAS 
The number of older people covered by private long term care insurance has grown 
since the early 90s, but the cost of premiums is too high for most Americans. Some 
people injured on the job or in vehicle collisions may receive PAS through workers' 
compensation or private insurance. Finally, again for those with more resources of 
their own or in their families may purchase PAS out-of-pocket. Over 80 0/0 of all those 
needing PAS for ADLs or IADLs get their assistance from unpaid sources, primarily 
family. 

How is PAS funded in your State? 

World Institute on Disability 


Current Trends in PAS Usage and Availability 

Understanding who uses PAS, how it is paid for and used on a national scale may help us 
make sense of these trends in our own state. Generally speaking, most states reflect the 
national PAS trends. 

WHO USES PAS? 

PAS affects the lives of 15 million people. It is important to know who makes up the PAS user 
population and from where they receive their services. PAS affects the aging, children, people in 
institutions, people with developmental, psychiatric and physical disabilities, chronic illness, etc. 

The following information can be used to develop talking points when interacting with legislators 
and policy makers. 

In 1995, there were approximately 14.8 million American adults who received assistance 
with activities of daily living (ADLs), or instrumental ADLs. 

The vast majority of people who need PAS live in the community (non- institutionalized 
settings). 

• 2,000,000 live in nursing homes (90 0/o over 65 years old). 
• 300,000 live in facilities for people with mental retardation. 
• 58 0/o are people 65 years of age or older. 
• 42 0/o are people under the age of 65. 
• About 500,000 are children. 
About 300,000 people with hearing impairments need sign language or oral 
interpreters. 

• The number of people with vision disabilities who use readers or drivers is 
unknown. 
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SOURCES OF PAS 

People needing PAS receive assistance from informal/volunteer sources or from paid sources 
(either publicly funded, from insurance companies or other third-party payers, or out of 
pocket). 

• Among PAS consumers living in the community, 79 0/0 use volunteer/unpaid 
personal assistance only. Often this is assistance by a family member or a 
friend. (87 0/0 of these individuals live with a relative.) 
m 11 0/0 use both paid and volunteer PAS. 

• 10 0/0 use paid PAS only. (60 0/0 of these people do not live with relatives.) 
LIVING ARRANGEMENTS OF PAS USERS 

The PAS user population includes people who live: alone, with family members, in group or 
foster homes, in institutions and nursing homes. 

RI PAS users who live with relatives are more likely to rely on them for their 
personal assistance. (Conversely, people who live on their own have a 
greater chance of receiving paid PAS.) 

• 360/a of "long-term care" expenditures are paid out of pocket. Private 
insurance accounted for 1-2 0/o of 1993 expenditures. 
ABILITY TO PAY 

Working aged adults who need personal assistance have substantially 
lower personal incomes and are less likely to be employed than the general 
population. This is both because of disability and the disincentives to 
employment which are built into income maintenance programs. 

The low purchasing power of people with disabilities largely explains why 
most users rely on family volunteers for assistance (WID Et BER, 1990). 

World Institute on Disability 


PUBLICLY FUNDED PAS AVAILABILITY AND EXPENDITURES 

• Between 132 and 175 publicly funded PAS programs were identified in 
surveys conducted by WID in 1984 and 1988. 
• In 1995 there were over 200 publicly funded programs, and in 1999 there 
were over 250. 
• Of the $56 billion spent by Medicaid in 1997 on long-term care, approximately 
$41 billion went toward nursing homes and other institutions, 
although most of the people who need PAS receive it outside of institutions. 
THE DEMAND FOR PUBLICLY FUNDED PAS 
In 1984 1 million people in America received some or all of their PAS 
from public programs (Litvak et, al„ 1987). By 1988 this number had 
increased to 2 million people. (Litvak, S., 1991) Soon new data will give us 
these figures for 1999. Most certainly it is over 2 million. 

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module four : PAS A National Perspective 

objectives 

Recognize the lack of uniformity among PAS programs nationally 
Understand the implications of current national legislation and litigation 
Identify the diversity among PAS programs in your state 
Evaluate the learning process 

overview 

PAS — The Eight Dimensions of Variance 

Why PAS is on the National Agenda 
Olmstead vs. Helen L.C. 
MiCASSA -1999 
The Work Incentives Improvement Act of 1999 
Early Periodic Screening, Diagnosis and Treatment 

What Do We Know About PAS in Our Own State 
Wrap Up 

World Institute on Disability 


The Eight Dimensions of Variance 

There is a tremendous variance in both the availability and delivery methods of PAS programs. 
One of the main frustrations of PAS advocates and users is the lack of a uniform system for 
providing PAS in the U.S. These are 8 main dimensions upon which PAS systems vary: 

Funding sources



Populations served



Eligibility criteria 

Services provided



Maximum service limits/hours available



Location of services 

Service provider modes and wages



Degree enabling independent living



FUNDING SOURCES 
As was outlined in Module Three, there are a number of different sources of funding for 
PAS. The largest source of federal funding for PAS programs is Medicaid. All states use a 
combination of federal monies and state revenues to fund some or all of their PAS 
programs. In 1995, 34 states also had PAS programs that were funded solely from state 
revenues. 

POPULATIONS SERVED AND ELIGIBILITY CRITERIA 

PAS programs directly limit access by defining the groups who will be served through 
various eligibility criteria including disability, income and assets. 

 

PAS Fundamentals 


ELIGIBILITY CRITERIA 

Age Restrictions 

As of 1995, less than one half of PAS programs in the U.S. serve people of 
all ages. 

is Less than one half serve children. 

Disability Criteria 

All programs require some sort of documented need for services, the majority 
based on assessments of functional limitations. 

• More than half (56%) of PAS programs say they serve people with all types of 
disabilities, but in reality few programs provide services to compensate for 
visual, hearing or cognitive impairments (e.g., reading, sign language 
interpretation, money management), and few serve people with mental 
retardation or psychiatric disabilities. 
26 0/0 serve people with physical disabilities only. 

Income/Resource Restrictions 

• Half the programs limit eligibility to people whose incomes fall below the 
poverty level. 
As of 1990, only 13 programs encouraged employment. In Ohio, for example, 
there is a program that allows recipients to earn more than $40,000/yr. — and 
still get some paid assistance. Massachusetts has an asset limit but not an 
income limit. People can buy in to Medicaid on a very generous basis. As a 
result Massachusetts is the state closest to having no penalty for working. 

• Most programs have marriage disincentives because the recipient's income is 
considered in combination with the spouse's income when determining 
eligibility. 
• Most states also consider college scholarships as part of income, thereby 
penalizing students. 
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World Institute on Disability 


SERVICES PROVIDED 

• Only 33 0/o of programs offer a full range of PAS. 
P: The provision of paramedical services, particularly "invasive procedures" 
such as assistance with medications, injections, catheters or ventilators, 
is particularly problematic for PAS users throughout the U.S. Only 1/3 
allow this. 
Few programs offer emergency services. 

MAXIMUM SERVICE LIMITS/HOURS AVAILABLE 

840/0 of programs allow PAS users to get services 7 days a week and any 
time during the day or night. 

Service limits restrict PAS program utilization for people needing 
assistance. These service limits are usually expressed in terms of either 
maximum hours per person or maximum expenditures per person over a 
month. 

Programs range in their maximum allowance from 3 hours per week to 
24 hours a day. In 1995, seven states had PAS programs that allowed 
eligible consumers to receive assistance 24 hours a day. 

• Several states offer small residential programs specifically geared to 
people with high PAS needs. The programs require that consumers live in 
some type of congregate housing to maximize personal assistant 
staffing (Kennedy, 1992). 
LOCATION OF SERVICES 

• States range from requiring that PAS users receive assistance only in 
their homes, to allowing users to receive assistance anywhere it is needed, 
e.g., at school or work, on vacation, and in recreation and community 
activities. 
PAS Fundamentals 


SERVICE PROVIDER MODES AND WAGES FOR 
PERSONAL ASSISTANTS 

There are three broad categories of service delivery modes: agency providers, 
government providers and independent providers. Most programs emphasize 
the use of only one of these delivery modes or provider types. 
Agency providers tend to require expensive and sometimes intrusive levels of 
involvement by supervisory and nursing staff. 
• In addition they pay the highest provider wages and more benefits. 
• Many are organized into unions. 
• In agency provider programs the PAS users tend to have far less control over 
the who, what, when, where, and how of their PAS. 
Programs which utilize Independent Providers tend to offer more hours of 
PAS, presumably due to the lower cost per hour. 
• The Independent Provider mode is the most likely to afford some degree of 
consumer control by allowing PAS users to hire, fire, train and supervise their 
own personal assistants, and determine tasks and hours. 
Totally consumer-controlled PAS is not suited to all PAS users. Those who are 
not totally self-directing may need various degrees of supports. For example, 
the Pennsylvania Attendant Care Program has a menu of management services 
that consumers can select from in order to get help with tasks that are 
difficult for some reason. 
Wages and benefits of independent providers are generally lower. There is less 
organizing among IPs. In California, however, PAS Public Authorities have been 
working with consumers, providers and the union to increase wages for independent 
providers. In San Francisco, most notably, this coalition convinced 
the county to supplement the minimum wage paid by the state to workers. 

42 


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DEGREE TO WHICH THE PROGRAM ENABLES 

INDEPENDENT LIVING 

"Long-term care services," which include personal assistance, have been 
provided under three distinct conceptual models: 

(1) the informal support model — which places an unfair burden on 
disabled persons and their families; 
(2) the medical model — which is provider directed, medically and health 
care oriented and fundamentally linked to the nursing home industry; 
and 
(3) the independent living model — which is consumer directed and nonmedical 
in approach. Providers are recruited, paid by and 
accountable to the user. 
In 1984, only 33 programs of a total of 147 surveyed scored high on an independent 
living scale. In this independent living model of PAS, the assistants 
were recruited, paid and accountable to, the user. Furthermore, no medical 
supervision was required. 

(The data cited in this section is based on studies conducted by the World Institute on Disability in 

1988 and 1994 and 1990 U.S. Census data.) 

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Why is PAS on the National Agenda? 

There are several reasons why PAS has emerged onto the national agenda: 

n The increasing number of people needing PAS — due to the following factors: 

• The achievements of Medical Technology have enabled people to live who would 
have died earlier in this century — increasing the number of people requiring PAS. 
• The increase in older people (the boomers) needing PAS even though the proportion 
of the aged population which becomes disabled is declining. 
• Deinstitutionalization of people with developmental and psychiatric disabilities 
continues. 
is The transformation of the US family to single parents and two parents working has 
greatly reduced the availability of family "caregivers." 
n Persistent Advocacy Efforts 
n The lack of a comprehensive national policy 
n Federal and state cost cutting of Long-term Services costs 

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World Institute on Disability 


INCREASING NUMBER OF PEOPLE NEEDING PAS 

The number of people needing personal assistance services has grown tremendously 

during the last half of the 20 th century. Many factors have contributed to this growing 

need, including: 

Advances in medical technology. These advances are enabling increasing numbers 
of people with extensive congenital and acquired disabilities to survive and have 
longer lives. 

Increase in the aged population. People over the age of 85 — currently numbering 
4,201,000 — is the population that is both growing faster than any other and most 
likely to need assistance in performing the activities of daily living. 

n Deinstitutionalization. Since the 1960s, largely due to advocacy efforts on behalf 
of people with disabilities — especially people with developmental and psychiatric 
disabilities — there has been a growing emphasis on the need to, whenever possible, 
keep people in the community rather than in institutions; hence the increased need 
for PAS in the community. 

Transformation of the U.S. family. Rises in divorce rates and the number of working 
women, shrinking family size, the disappearance of the extended family, and the 
growth in single-parent households have all contributed to the family's decreasing 
ability to provide personal assistance services for family members with disabilities. 

PERSISTENT ADVOCACY EFFORTS 

Another factor which has contributed to the emergence of PAS as a national issue is 
the birth and development of the Independent Living and Disability Rights movements. 
Disability Organizations (such as the World Institute on Disability, the 
National Council on Independent Living, and the Consortium for Citizens with 
Disabilities) consumer groups (such as ADAPT [American Disabled for Attendant 
Programs Today] and the Older Women's League) and countless PAS users, disability 
advocates, parents and community supporters have all worked to keep PAS on the 
national agenda. 

Most recently the Work Incentives Improvement Act of 1999 passed. Additionally, the 
Medicaid Community Attendant Services Act (S. 1935) was reintroduced in Congress 
(November 1999) after years of advocacy efforts led by ADAPT members around the 
United States. 

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LACK OF A COMPREHENSIVE NATIONAL POLICY 

Despite the growing need and interest, the federal government has neither promoted 
the development of PAS nor established a coherent policy. As has been documented 
throughout this manual, states have pieced together funding from various federal 
sources and have developed their own PAS policies and programs. There is no uniform 
or coordinated system. 

The lack of a comprehensive, coordinated national policy often means that PAS users 
have to maneuver through a bewildering maze of fragmented state policies and 
procedures. Absence of a uniform national policy also means that PAS users often 
must make do with services that are inadequate, or they must remain in an institution 
or nursing home, or are forced to live with their families. 

GOVERNMENT COST CUTTING 

A factor which propelled PAS onto the national agenda in the 1980s relates to 
government cost cutting. As the need for personal assistance services has grown, the 
federal and state governments have concurrently been scrutinizing the costs 
associated with providing "long-term care" services, especially nursing home care. 
Community-based services, including PAS, have proven to be a more economical 
approach to providing support and assistance to people with disabilities, regardless of 
their age. 

World Institute on Disability 


An Update on National Policy Initiatives 

MICAS SA: THE MEDICAID COMMUNITY ATTENDANT SERVICES 
AND SUPPORT ACT OF 1999 
The enactment of MiCASSA (S.1935, introduced on November 16, 1999) would, for the first time, 
establish the beginnings of a national PAS system instead of the fragmented non-system that 
now exists. Under MiCASSA — states would be required (rather than having the option, as they 
do now) to provide PAS at least to people who would be eligible for placement in institutions, 
enabling them to live independently in their own homes and other community settings of their 
choice. A wide variety of community services and supports would be provided to those who need 
them. 

People with disabilities, their families, and/or their representatives would have real control 
over how, when, and where they receive community attendant services and supports, as well 
as the right to approve or disapprove needs assessments and service plans; 

Users could choose among several consumer-controlled service delivery modes and payment 
mechanisms, including agency and individual providers, vouchers, direct cash payments, and 
fiscal agents; 

States could raise income limits above current levels so as to stop discouraging people from 
getting jobs. 

MiCASSA's goal is to provide flexible, consumer-responsive services, which means that the person 
receiving the services decides how, when and where they are provided. Many people with 
disabilities can and want to select, train and supervise their own attendants. For them, MiCASSA 
provides options such as vouchers with which to pay attendants (including family members) and 
training in directing and managing their care. For those who prefer not to manage their own 
services, it also provides for a consumer-directed agency model. 

 

PAS Fundamentals 


THE WORK INCENTIVES IMPROVEMENT ACT OF 1999 

Under previously existing federal law, people on Social Security Disability Insurance (SSDI) 
who returned to work risked losing their cash and health benefits. To a large extent, this 
explains why fewer than one half of one percent of SSI recipients have returned to work 
even though, according to estimates, over 70 0/0 of people with disabilities are willing and 
able to work. 

The Work Incentives Improvement Act, signed on December 17, 1999, was intended to 
remove these so-called work disincentives from the Social Security Act by adding the 
following provisions: 


Instead of disappearing entirely once a recipient's earnings reach the level of 
"Substantial Gainful Activity" (currently $700 a month), their SSDI payments will 
decline gradually as their earnings increase. 

Continued Medicare eligibility for people who leave the SSDI rolls will be 
extended from four to eight-and-a-half years. 
n People who need Medicaid benefits (such as PAS) will be able to "buy in" to their 
state's Medicaid program. 

The bill also includes the "Ticket to Work and Self Sufficiency" program, under which people 
with disabilities will be able to use vouchers to select their own vocational or psychosocial 
rehabilitation provider. 

Other critical provisions in the bill include: tax credits for workers with disabilities to help 
defray the cost of transportation and /or technology; suspension of work-related continuing 
disability reviews; and expedited reinstatement of cash benefits in cases where an 
acute episode of the person's impairment forces them temporarily out of employment. 

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OLMSTEAD VS. L.C. 
History 

In May 1995, an Atlanta Legal Aid attorney helped L.C. (a pseudonym), a young woman 
with mental retardation and a psychiatric disability to challenge her confinement in an 
Atlanta psychiatric hospital. She (and E.W., another individual who joined the suit in January 
1996) had been recommended for community placement by treatment professionals, 
but remained institutionalized. The two women 
On June 22, 1999 the argued that Georgia's failure to provide them with care 
in a community-based setting appropriate to her needs 
US Supreme Court held violated Title II of the Americans with Disabilities Act 

(ADA). 
that the segregation of A District Court determined that the state of Georgia's 
failure to place the women in an appropriate commu


individuals with dis


nity-based treatment program did indeed violate the 
anti-discrimination provision of Title II of the ADA. The 

abilities in institutions 

court rejected the State's argument that inadequate 
funding, not discrimination against L. C. and E. W. by 
may indeed constitute reason of [their] disabilit[ies]," accounted for their retention 
at the psychiatric hospital. Under Title II, 
discrimination based on thecourtconcluded, unnecessary institutional segregation 
constitutes discrimination per se, which cannot be 
disability. justified by a lack of funding. The Court ordered the State 


to provide community-based treatment for both women. 
The state of Georgia appealed this decision to the Circuit Court of Appeals and lost. The 
state then asked the US Supreme Court to decide "[w]hether the public services portion of 
the ADA compels the state to provide assistance for mentally disabled persons in a community 
placement when appropriate assistance can also be provided to them in a State 
mental institution." Twenty-two states filed a brief urging the Supreme Court to accept 
the case for review. After the Court accepted the case, all of these, and four additional 
states signed on to an amicus brief arguing against federal court interference in states' 
operation of mental health and developmental disability systems. 

PAS Fundamentals 


Decision 

On June 22, 1999 the US Supreme Court held that the segregation of individuals with 
disabilities in institutions may indeed constitute discrimination based on disability. The 
court ruled that the ADA may require states to provide community-based services rather 
than institutional placements for individuals with disabilities. The Court held that 
unjustified institutionalization is discrimination not only because it perpetuates 
assumptions that people with disabilities are incapable or unworthy of participating in 
community life, but also because confinement in an institution severely limits everyday 
life activities, such as family relations, social contacts, work, educational advancement 
and cultural enrichment (http://www.bazelon.org/olmstead.html). 

The Court's opinion, however, does not establish de-institutionalization as a required, or 
even as a preferred mode of service delivery in all circumstances. Specifically, states can 
maintain institutional placements by demonstrating that providing community-based 
services to an individual would fundamentally alter the state's service-delivery system. 
For example, an individual cannot skip to the top of the waiting list by filing a lawsuit to 
obtain community services if a state has a "comprehensive, effectively working plan for 
placing qualified persons with mental disabilities in less restrictive settings, and a waiting 
list that move[s] at a reasonable pace not controlled by the State's endeavors to 
keep its institutions fully populated." 

Implication 

The Supreme Court's ruling should serve the purpose of encouraging states to plan implementation 
strategies to comply with the ADA's integration mandate, that services be 
provided "in the most integrated setting appropriate to the needs" for people with 
mental or developmental disabilities. 

World Institute on Disability 


EARLY AND PERIODIC SCREENING, DIAGNOSIS AND 
TREATMENT (EPSDT) 

Early and Periodic Screening, Diagnosis and Treatment is the Medicaid benefit for poor 
children under the age of 22. Federal regulations require states to furnish any "medically 
necessary" diagnostic and treatment service for illnesses or conditions identified 
during screening. Covered services include all mandatory and optional services that a 
state is permitted to cover under Medicaid, even if the state has opted not to offer that 
service to adults. Therefore these regulations require states to provide Personal Care 
services to children who qualify for Medicaid as part of the Medicaid state plan, if 
personal care is "medically necessary." A state must do this regardless of whether or not 
it has exercised its option to provide personal care to adults under its Medicaid state 

plan. 

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What Do We Know About PAS In Our Own State? 

The purpose of this worksheet is to begin constructing an overview of the PAS system 
in your state. The following should be completed for each state or district represented. 

Eight Dimensions of PAS 

 

Funding SourcesMaximum Service Limits/Hours Available 

 
Populations Served Location of Services 

 

Eligibility Criteria Service Provider Modes and Wages 

 
Service Provided Degree Program Enables Independent Living 

World Institute on Disability 


Conclusion 

PAS is a critical issue in this country. 

The long-term care system in America has a pronounced bias toward institutional services — 
with over 800/0 of the long-term care funds going for these services. Only 20 0/0 are left to pay for 
ALL the community based programs. 

Every state that gets Medicaid dollars must have a nursing home program, while community 
based services are optional. Unfortunately, there is no uniformity of PAS programs. What we do 
know is the following: 
Every state is different. 
No state serves all populations who require PAS. 
There is a wide variety of funding sources and jurisdictions. 
There is a fundamental lack of comprehensive, coordinated policy. 
There is an unequal distribution of services across states and even within the same state. 
PAS programs encourage and maintain dependency: there are inherent employment 
and marriage disincentives. 
Publicly funded programs are aimed at poor people and frequently restricted to people 
at or below the poverty level. 
Programs are not tailored to individual needs: they are often inflexible in service 
delivery. 
Worker wages and benefits are usually too low to insure a pool of appropriate and 
reliable personal assistants. 
Quality assurance comes "from above" by administrative oversight including state compliance 
standards, paper reviews, and nurse supervision. 
PAS users' ability to hire, train, manage, and terminate assistants ranges from program to 
program. 

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PAS Fundamentals