1. BACKGROUND ON PERSONAL ASSISTANCE SERVICES (PAS)
   
   
   1. Definition
      
      
   2. Statistics
      
      
   3. Home vs. Institution
      
      
   4. Activities in which PAS may be required
   
   
   
2. DISABILITY AND PAS
   
   
   1. Types of disabilities and services needed
   
   
   
3. IMPORTANCE OF PAS
   
   
   1. The issue
      
      
   2. Problems with the PAS system
   
   
   
4. PSYCHOLOGICAL ISSUES
   
   
   1. Help-Seeking Behavior
      
      
   2. Diversity
      
      
   3. Definitions of Independence/Dependence
   
   
   
5. HISTORY OF PAS IN THE U.S.A.
   
   
   1. Before 195O's
      
      
   2. 1950's
      
      
   3. 1960's
      
      
   4. 1970's
      
      
   5. 1980's
      
      
   6. 1990's
   
   
   
6. FUNDING SOURCES FOR PAS
   
   
   1. Federal Funding Sources
      
      
   2. State Funded Programs
      
      
   3. Private Funding Sources for PAS
   
   
   
7. CDIP'S PAS OBJECTIVES
   
   
8. REFERENCES

1. BACKGROUND ON PERSONAL ASSISTANCE SERVICES (PAS)
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   1. Definition: The World Institute on Disability's (WID) Rehabilitation Research and Training Center on Personal Assistance Services defines PAS as "involving a person assisting someone with a disability to perform tasks aimed at maintaining well-being, personal appearance, comfort, safety, and interaction with the community and society as a whole" (WID, 1999).
      
      
      1. Personal assistance services 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.
         
         
      2. Personal Assistance Services (PAS) are the services of another person that people with disabilities use to assist them to perform, manage, and move through daily life. These services include assistance with personal maintenance and hygiene, cognitive tasks, household maintenance, raising children, school- and work-related tasks, and community interaction activities. Many people refer to personal assistance services as attendant care.
      
      
      
   2. Statistics: An estimated 7.3 million adults living in the community are limited in their capacity to perform one or more of five basic activities of daily living (ADL) (e.g., bathing, transferring, dressing, eating, toileting) and more than half of this population, 3.7 million adults, require the assistance of another person in performing ADLs (Kennedy & LaPlante, 1997).
      
      
   3. Home vs. Institution: PAS helps people with disabilities continue to live in the community instead of an institution.
      
      
   4. Activities in which PAS may be required
      
      
      1. Personal Services (e.g., eating, walking, getting in and out of chairs, bowel and bladder functioning, taking medications, navigating grounds, menstrual care, sexual positioning)
         
         
      2. Paramedical Services (e.g., Respiratory care)
         
         
      3. Household Services (e.g., Preparing food, cleaning house, grocery shopping)
         
         
      4. Communication Services (e.g., voice interpreter, sign language interpreter, reading)
         
         
      5. Transportation Assistance Services (e.g., getting to and from home, school, work)
         
         
      6. Safety Assurance Services (e.g., on call services)
         
         
      7. Cognitive/Emotional Support Services (e.g., managing schedules, time, interpretation of interpersonal; interactions, cuing)

2. DISABILITY AND PAS
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   1. Types of disabilities and services needed
      
   
   

   DISABILITY	SERVICES
   1.  Physical	Personal, transportation, paramedical, safety assurance, household
   2.  Developmental	Cognitive/Emotional, communication, safety assurance
   3.  Sensory	Personal, communication, transportation, safety assurance
   4.  Cognitive	Cognitive/Emotional, communication
   5.  Psychiatric	Cognitive/Emotional, communication
   6.  Learning	Cognitive/Emotional, communication transportation
   7.  Environmental	Personal, paramedical, household

3. IMPORTANCE OF PAS
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   1. The issue: Personal Assistance Services policy at the national, state and local level has a profound impact on individual consumers 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 that is no longer suited to those new realities. The PAS system has developed as the disability population has changed substantially. The population is aging, creating a large pool of people with disabilities who are older. In addition, due to improvements in medical technology, people with much more significant disabilities, whether acquired at birth, a result of work, recreation or war injuries, are surviving longer.
      
      
   2. Problems with the PAS system. 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. The other problems that exist are 3) the absence of adequate training or "Counseling" for new PAS users, including those in transition from school to work, 4) the absence of emergency back-up services, 5) the dearth of personal assistance providers, 6) the lack of understanding of the nature of abuse experienced by PAS users and the successful methods that consumers use to counteract that abuse, and 7) the lower participation rates of people of color in PAS programs. The latter issues (3-7) have not been addressed yet by Federal policy makers, but there are several state and local initiatives, demonstrations and research projects aimed at finding ways to solve these problems.
      

4. PSYCHOLOGICAL ISSUES
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   1. Help-Seeking Behavior: The ability to ask for assistance is complex. For many with disabilities, it is simply a natural part of living everyday life. For others, perhaps those with shorter duration of disability status, asking for help can be daunting. Having the ability to comfortably articulate the need for assistance is important in that it offers people with disabilities access to a wide range of work and social opportunities.
      
      
   2. Diversity: Psychologists must keep in mind that knowledge about people with disabilities is required by APA ethical guidelines. Diversity and multicultural concepts have traditionally applied to people of color. This umbrella is being expanded to include disability, aging, and gay/lesbian/bisexual/transgendered communities.
      
      
   3. Definitions of Independence/Dependence: Becoming educated about disability can help psychologists rethink the way they conceptualize independence. Independence is often equated with "doing things by yourself." Some members of the disability independent living movement, however, believe that independence is better defined as "having the ability to direct your life." Directing one's PAS at home and within the work place may actually increase individuals' sense of independence and ownership of their lives. By supporting notions of interdependence, psychologists can help people with disabilities gain a greater sense of being a productive and valued member of society.

5. HISTORY OF PAS IN THE U.S.A.
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   1. Before 195O's: There were no formal PAS programs. State social services departments would send out housekeepers to families and individuals in distress. At times these families included a person with a disability. For the most part people with disabilities, who could not afford to hire household help, relied on their families or neighbors for assistance. If no assistance was available, people with disabilities were forced to live in institutions or nursing homes.
      
      
   2. 1950's: The first formal PAS programs were established. They were either organized to provide backup support to families assisting older relatives, as was the case in Oklahoma, or they were targeted to working age people, particularly polio survivors as was the case in California. A handful of other states started PAS programs in the 50s.
      
      
   3. 1960's: During this time Medicaid and Medicare were passed. States had the option of providing "personal care" as part of their Medicaid services for which the state would get matching funds from the Federal government. Oklahoma was the first state to take advantage of this option. But until the end of the 1980's New York State accounted for over 75% of all "personal care option" monies expended by the Federal Medicaid program.
      
      
   4. 1970's: From the beginning of the Independent Living Movement, in the Movement focused attention on personal assistance because they considered it to be one of the most critical elements of independent living. Centers for Independent Living made advocacy and peer support for PAS users one of four core services offered. The Independent Living Movement advocated for a consumer-directed, IL model of PAS as an alternative to medical model services and informal support from family. Due to IL Pressure, a few PAS programs were developed, using only state dollars, for people who work and therefore earn too much to qualify for Federally funded PAS programs. Often these programs developed with heavy involvement of the state vocational rehabilitation agency as happened, for example, in Massachusetts, Illinois, and Ohio. Generally program participants pay for their PAS on a sliding fee basis based on their income from which disability expenses have been excluded.
      
      Also during this time, Title III of Older American's Act was enacted. It targeted older people who earn too much from Social security and other sources to get PAS through Medicaid. It covered a very wide and varied number of services older people could use in order to remain in the community but was never well funded.
      
      
   5. 1980's: In 1986 PAS was framed as a cross-disability issue with the publication of Toward Independence by the National Council on the Handicapped (now NCD). In 1989 Congress developed the Medicaid Waiver Program, providing federal dollars to states to target specific populations or geographic areas for community-based PAS. The purpose of the waivers was to reduce institutional, nursing home or hospital costs. Unlike the Personal Care Option, the waivers are not an entitlement, so states can maintain waiting lists. By 1999 there were waivers in every state. They targeted aged and disabled people, people with HIV, people with developmental disabilities, disabled children, people with brain injury or those with high medical needs. Also during this period section 1619 of the Social Security Act passed allowing people on SSI to return to work and still maintain their Medicaid benefits which included PAS in at leas 10 states.
      
      
   6. 1990's: In 1990, the Americans with Disabilities Act (ADA) signed into law but only addressed personal assistance indirectly as a reasonable accommodation, but regulations did not require entities to provide "services of a personal nature."
      
      Efforts to develop PAS legislation cross disability and cross age were on the national agenda. The Consortium for Citizens with Disabilities (CCD), a key Cross Disability Lobbying group, issued a position paper in 1992, "Recommended Federal Policy Directions on PAS for Americans with Disabilities." The 1993 Clinton Health Care reform task force adopted many of the above concepts relating to PAS consumer choice and control into its proposal.
      
      Another policy trend involved efforts to eliminate penalties for working from the SSDI program. The Work Incentives Improvement Act has much bipartisan support. Among its many provisions, is one allowing PAS users leaving the SSDI rolls in order to work to receive PAS through Medicaid.
      
      Another PAS policy trend in this period was aimed at eliminating the institutional bias in Medicaid services. ADAPT proposed the Community Attendant Services Act (CASA), which has been introduced every year in Congress since 1997 with ever increasing Congressional support. Momentously, in 1999, the Supreme court upheld a lower court ruling (Olmstead vs. L.C.) and determined that the ADA's integration mandate applies to the long term services delivery sector. In particular the Court noted that institutionalization constitutes a form of discrimination specifically prohibited by the ADA. The Court required each state to have a "comprehensive, effective working plan for placing [people with disabilities] in less restrictive settings [than an institution]."
      
      Note: This historical account of PAS was provided by the World Institute on Disability (1999).

6. FUNDING SOURCES FOR PAS
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   1. Federal Funding Sources
      
      
      1. Medicare (Title XVIII): Theoretically, only funds short-term use of PAS for people receiving Medicare home health treatment. In practice, many people rely on Medicare for PAS.
         
         
      2. Medicaid (Title XIX): The bulk of these funds go toward hospital, nursing home and institutional care for low income people. However, Medicaid funds are also used by states to provide PAS through the Medicaid Personal Care Option(PC-Option) and Medicaid Waivers.
         
         
         1. The Medicaid PC-Option Programs serve a large number of people because they are entitlement programs. The PC-Option programs serve people of all ages and disabilities and are targeted to people at or below the poverty level. Between 26 and 32 states have a PCO program. (Figures vary due to different criteria)
            
            
         2. The Medicaid Waiver Programs - The Home and Community-Based Service Waivers - commonly known as Medicaid Waivers - serve very few people, and are intended to be an alternative to nursing homes for people who are severely disabled. The waiver programs offer a wide variety of services both in and out of the home. On the average, these programs have the most generous service allowances.
            
            Medicaid Waiver Programs tend to be highly medically supervised, and use agency providers. The waivers have somewhat higher income eligibility limits than the PC-Option Programs, but not high enough to avoid employment disincentives.
            
            One very problematic aspect of the waivers is that they are very temporary - thus states must go through the time-consuming process of reapplying every three years. Every state has at least one Medicaid Waiver Program.
         
         
         
      3. Social Services Block Grants (Title XX): These programs tend to be very large. One problem associated with SSBG is that states are required to supplement the federal funds. Currently, a larger and larger supplement is being required by states that receive SSBG. It is difficult to categorize SSBG-funded PAS programs because they vary enormously from state to state. 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 and respite/short-term service. On paper, the Older Americans Act is one of the most flexible of federal title programs, but there is little money behind it. Because of the funding limitations, it has not been a major source of PAS programs.
         
         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 levels 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 Aid and Attendance Allowance: An "aid and attendance allowance" is furnished to veterans in addition to their monthly compensations for disability incurred during active service in the line of duty. Veterans can receive as much as $2,000 for their personal assistance services needs monthly
         
         
      6. Vocational Rehabilitation: In some states Vocational Rehabilitation funds have been 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.
      
      
      
   2. State Funded Programs
      
      During the late 1970's and 1980's a number of states created PAS programs funded solely by state funds. There were 27 such programs in 1988. In 1995 we interviewed 35 such programs out of the 144 programs that responded to our mail-out (24%) including programs in 26 states.
      
      These programs are the most likely to encourage consumer control in some ways. For example, these programs are more likely to use Independent Providers, and to provide PAS at work. These programs have wide variations in income and eligibility requirements, though as of 1995, 22 of the 35 state funded programs had 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 age and disability groups that fall through the cracks between the federally funded programs. These programs frequently have long waiting lists and are subject to reduction or elimination by the states during periods of cost cutting or fiscal crisis.
      
      
   3. Private Funding Sources for PAS
      
      There are a few experimental Social Health Maintenance Organizations (SHMO's) which include PAS as part of their service package. Several states have taken part in HCFA-funded SHMO demonstrations to evaluate cost savings and service quality achieved by having primary, secondary and long term services (LTS) managed together by one organization. Developing managed care systems that cover long-term services has so far proven to be very difficult.
      
      Note: Information on PAS funding sources was provided by the World Institute on Disability (1999).

7. CDIP'S PAS OBJECTIVES
   Return to outline
   
   
   1. To understand the nature of PAS and how it affects the quality of life for people with disabilities
      
      
   2. To realize how PAS affects our roles as psychologists in academic, service, and research domains
      
      
   3. To conceptualize PAS from a social/political perspective so that advocacy issues and efforts are taken seriously
      
      
   4. To broaden other psychologists views on PAS and people with disabilities, including colleagues with disabilities

8. REFERENCES
   Return to outline
   
   
   Kennedy, J. and LaPlante, M.P. (1997). A profile of adults needing assistance with activities of daily living, 1991-1992. Disability Statistics Report, 11. Washington DC: U.S. Department of Education, National Institute on Disability and Rehabilitation Research.
   
   World Institute on Disability. (1999). Personal Assistance Services 101: Structure, Utilization and Adequacy of Existing PAS Programs. Oakland, CA: Author

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