Personal Assistance Service Policy: Where We Have Been and Where We Are Going

Dr. Lilvak is Senior Research and Policy Analyst with the World Institute on Disability, Oakland, CA.

The following is an article from American Rehabilitation Volume 24, Number 4 Winter 1998 Personal Assistance Services Part 2 of 2. American Rehabilitation is the official publication of the Rehabilitation Services Administration (RSA) 330 C Street S.W. Washington D.C. 20202-2531

The Problem

Personal Assistance Services (PAS) policy at the national, state and local level has 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 United States 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 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, though recent data show that 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 technology, people with much more significant disabilities - whether acquired at birth or as a result of work, recreation, or war injuries - are surviving longer. The independent living movement - the civil rights movement for people with disabilities - arrived in the 1970's, demanding control, individual choice, an end to dependency upon well-meaning but disempowering professionals, and a view of disability as stemming largely from barriers which have been created by society. This view culminated in passage of the Americans with Disabilities Act (ADA).

Yet, current PAS policy remains inconsistent with precepts of ADA. The promise of ADA for significantly disabled people is hollow if they cannot get out of bed, get dressed, plan their day, and get out of the house in order to go to work or take advantage of increased public and government access.

Stages of System Development

The PAS system is a phenomenon of the last half of the 20th century. There have been three periods of system development. The first stage was the adaptation phase, when states modified old systems and programs to meet contemporary demands. The first PAS programs were jerry-rigged from systems built in the late 1950's and early 60's for other purposes. The earliest PAS programs developed from social welfare programs for protection against abuse, neglect, and the ravages of poverty, using chore workers who were sent to families to help them in time of need (Litvak, Heumann, & Zukas, 1987).

Over the past 30 years a gradually increasing number of states chose to make PAS an entitlement under their Medicaid program (Litvak & Kennedy, 1992). Medicaid provides health, hospitalization, and institutional care as well as a wide variety of optional health related services to "aged and disabled" people. However, there are still 18 states with no "personal care option" included in their Medicaid state plan. The provision of PAS in the community is left to state discretion, while every state is required to provide institutional and nursing home placement for people with disabilities under Medicaid (Harrington, et al., 1998). There are two serious results of this state discretion not to provide PAS in the home and community.

First, 20 percent of the people who need PAS, consume over 80 percent of the federal long-term service dollars because they live in nursing homes and institutions (GAO, 1994; Pepper Commission, 1990). The need for PAS is not new, but nursing homes and institutions are an old solution. Medicaid's institutional bias is inconsistent with much of the literature which shows that elderly and disabled people prefer not to go to nursing homes and institutions. In Pennsylvania, advocates have been successful under ADA in requiring the state to provide community-based services, if the recipient prefers, rather than institutional services, as a result of the Helen L. decision (1995). The L.C. v . Olmstead (1998) pursued by Georgia litigants in the 11th Circuit, resulted in a related decision. If such decisions were implemented on a national scale, it would change the PAS system profoundly. A major shift in Federal Government policy in this direction was signaled by the July 29, 1998, letter of Sally K. Richardson, Director of the Center for Medicaid and State Operations. The letter advised State Medicaid Directors that even though the above ". . . decisions are only binding in the affected circuits, the Attorney General has indicated that under the ADA States have an obligation to provide services to people with disabilities in the most integrated setting appropriate to their needs." She goes on to state that "the most integrated settings standard applies to . . . State Medicaid Programs."

The second significant result of state discretion over whether to provide PAS in the home and community under Medicaid is that Supplemental Security Income (SSI) recipients who want to go to work face a major obstacle to receiving PAS if the personal care option is not available under Medicaid in their state. Section 1619 of the Social Security Act allows people to receive Medicaid benefits after they have returned to work, including PAS (where available). (SSI is paid to people over 18 years old who have not worked enough years to be able to receive Social Security Disability payments.)

Medicare is another program which has been adapted somewhat to serve PAS needs. Medicare is health insurance for acute healthcare and primary care. Medicare pays for home healthcare for those needing medical care at home. Over the years, home health agencies have found ways under Medicare to provide PAS services to people with chronic conditions and disabilities, using home health aides. Due to the lack of 1619-like provisions for SSDI Medicare recipients, however, there is no provision for an individual to return to work and still receive some public assistance for home health services over an extended period of time. (SSDI is paid to workers who have become too disabled to work.)

The second stage, the gap filling phase in the development of PAS, began in the 1970's with the establishment of new programs geared to PAS for certain "targeted" populations. Beginning in the late 1970's, a few 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 (e.g., in Massachusetts, Illinois, and Ohio). Generally, program participants pay for their PAS on a sliding fee basis according to their income from which disability expenses have been excluded.

Title III of the Older American's Act targets older people who earn too much from Social Security and other sources to get PAS through Medicaid and state funded programs. It covers a very wide and varied number of services older people could use in order to remain in the community. For the most part, the small amount of money allocated by Congress to implement Title III did not go toward PAS in most states, and there has been little increase in funding from Congress for years.

The next gap filler programs were the Medicaid waivers geared first to aged and disabled people, then gradually to people with developmental disabilities, people with traumatic brain injury, technology dependent children, people with high medical needs, and people with AIDS. The purpose of the waivers was to prevent or reverse institutionalization. In general, they provide a richer set of services compared to other PAS programs.

There are several problems with the waivers, however. They are temporary and states need to reapply for them on a regular basis. They are aimed at serving only those who have been or would be in institutions, so the pool of money available is only that which would have been available to cover recipient needs based on existing nursing home and institutional beds. The amount of money the states receive per consumer is different, depending upon the cost of institutional care for these varied populations. Consumers who would otherwise be living in acute settings receive the most money for services in the home, followed by those with developmental disabilities and, lastly, those with later onset physical disabilities. The waivers limit the number of people served and generally have long waiting lists. Many of the 18 states have not chosen to provide PAS in the home and community as an entitlement in their regular Medicaid program, but have built their PAS system on these relatively small waivers in order to avoid implementing an entitlement program; and, in all states the waivers have led to large sums of money being available to serve a relatively small number of people in programs that rely, generally, upon high priced agency providers.

Fueled by the Medicaid waivers, this second gap-filling stage has resulted in a huge increase in number of programs and somewhat of an increase in numbers served. A directory of the existing programs in every state will be available from the World Institute on Disability (1998). This directory is a way for consumers, rehabilitation professionals, researchers, and advocates to know more about the PAS system in their area and across the United States. The latest stage involves two trends: the consolidation and centralization of programs at the state level and the introduction of much more consumer control and participation in the management of their PAS. The consolidation is occurring in order to realize efficiencies of scale across age and disability by combining similar programs under one administrative body. State councils and task forces have been forming to analyze their PAS system as a whole (e.g., Wisconsin, Texas, New York, and Massachusetts). The State of Oregon took this process one step further and combined all long-term services for younger and older disabled people so that admission to a nursing home depends upon rejection of all possibilities for service in the home and community. Over the years, Oregon has repeatedly demonstrated how cost- effective this can be. Another consolidation trend being considered on the state level is to link PAS to managed healthcare in a further move to rationalize the PAS system. Arizona has taken this process the furthest to date. A key task of the World Institute on Disability's Rehabilitation Research and Training Center on Personal Assistance Services (RRTCPAS) is to monitor these and other policy changes in the PAS system.

The introduction of more opportunities for consumer control and direction is the other new trend in the system. Studies relating to this trend are well represented in these two special issues of American Rehabilitation. Interaction between the disability community and elderly community has resulted in fruitful exchanges on the issue of consumer control for older people (Kane, 1995; White House Conference on Aging, 1995). This interest is reflected in the publication of Consumer Choice News as a joint effort of the National Council on Aging and the World Institute on Disability. PAS for those with psychiatric disabilities is in its infancy and is poorly understood by consumers and professionals alike. Several states have adapted the PAS model to support people with psychiatric disabilities with cuing to perform their daily routine, including taking medications. Some are thinking about more sophisticated options such as advanced directives so that the personal assistant will know the consumer's wishes regarding hospitalization and treatments when the consumer experiences an exacerbation of his/her condition (L. Stewart, 1996). We are seeing programs springing up to support people with cognitive disabilities, both with and without physical disabilities, to facilitate their living in homes of their own rather than group homes (Vivona, V., Eckels, K., Dresen, J., & Zukas, H., 1998). Sally Richardson (personal communication, Spring,1998) stated in her letter to State Medicaid Directors that the "forthcoming State Medicaid Manual will define personal care services" in terms of need for assistance with ADL's and IADL's so that the states can go beyond physical tasks to include cognitive and safety assurance tasks. Yet the availability of a range of programs designed for all populations does not exist in many places. Every state is different and no state meets the needs/demands of all populations equally.

Achievements and Problems

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 the 1993 Health Care Reform Task Force, PAS is seen by policymakers as a cross-disability as well as a cross-age issue (Health Security Act, 1993). Consumer direction and control has become a viable option. Studies of consumer-directed services, 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 are showing that many consumers prefer PAS arrangements that allow them to be in control and that such programs are legally and economically feasible (Egley, 1994; Sabatino & Litvak, 1996; Beatty, 1998; Benjamin, 1998; Reiff, 1996; Cameron & Firman, 1995).

Attention is being drawn even more to PAS as a work necessity. Due to the 1992 Rehabilitation Act Amendments, vocational counselors must include PAS in IWRP's so that clients and counselors begin to plan for PAS needs preclosure. Research is finally coming out that shows, as disabled people have long maintained, that there is an increase in work and community engagement when one has PAS (Richmond, Beatty, Tepper, & DeJong, 1997; Nosek, Fuhrer, & Potter, 1995; Kimmich, 1991.)

Publicly funded PAS programs that increase income and asset limits for eligibility and thereby encourage competitive employment are rare, small, and largely state-funded, but could stand as models (Roth, 1992). In theory, any program that offers the choice of hiring and managing independent PAS providers cannot monitor whether recipients use PAS at work. The key issue then becomes the income and asset limits that the program imposes to determine eligibility. As noted earlier, the passage of 1619 has allowed people on SSI to work and receive PAS in states where PAS is available to Medicaid recipients.

The recently launched Cash and Counseling demonstration projects supported by the Robert Wood Johnson Foundation and the U.S. Department of Health and Human Services theoretically will allow people to customize their PAS and use their money to shape the personal assistance provider market. Money that follows the individual leads to personal and family empowerment, the ultimate consumer control model. Many problems remain, however, 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:

• penalties for work, marriage, and scholastic achievement and
• wide variation in proportion of PAS users served in public programs across the states.

The other major problems are:

• the absence of adequate training or "Counseling" for new PAS users, including those in transition from school to work,
• the absence of emergency backup services,
• the 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, and
• the lower participation rates of people of color in PAS programs.

The last four problems above have not been addressed yet by federal policymakers, but there are several state and local initiatives, demonstrations, and research projects aimed at finding ways to solve these problems.

Abolishing Work Penalties

On the state level, Medicaid waivers for working people are beginning to appear at state discretion as a result of the Balanced Budget Amendment of 1997. The Amendment attempted to fill the gap for PAS users who want to work by extending income eligibility limits for those on SSI and instituting a Medicaid waiver for working disabled people who are on Medicaid and/or on SSI. These waivers also may enable SSDI PAS users to return to work because eligibility is not linked to being an SSI recipient, but only to being SSI eligible. However, the waivers have severe limitations in that individuals still have to be low income to be eligible, unless the state chooses to raise the income eligibility limit. Also there is no incentive for states to institute such a buying and in many instances the amount of money needed to "buy" waiver services is prohibitive. State vocational rehabilitation agencies could play a key role in encouraging the development of these new PAS programs in their state and making them truly accessible.

The recently crafted Jeffords-Kennedy Bill (1998) is an attempt to ameliorate these problems by lifting the income and resource limits for eligibility to allow SSDI and former SSI recipients with higher incomes to buy into a PAS Medicaid waiver and gives grants to states if they opt to institute a Medicaid buy-in for workers.

Increasing Outreach

In general, social welfare policy in the United States is designed so that not everyone eligible for a program will actually come forward to receive it, either because of stigma, difficulties in applying, or lack of knowledge of the program. PAS programs are no different. In particular, ethnic and racial minority communities are impacted by the lack of targeted outreach to these communities (Eckles et al., 1998). CASA (HR2020) has been introduced as a result of much work on the part of the advocacy group ADAPT to extend PAS coverage in the community to everyone who is nursing home eligible under Medicaid regardless of the state. In a sense, this makes the Medicaid waivers permanent in every state and redirects nursing home funding to PAS.

Increasing Consumer Training

Training of disabled people to manage their PAS is a major contribution to improving the quality of PAS, along with increasing provider pay and benefits. Some centers for independent living (ILC's) have taken on the task of training people with disabilities to recruit, hire, terminate, train, supervise, and pay their providers. Unfortunately, most of the ILC's do not do this training on a regular basis because they are not reimbursed for it. Excellent training manuals are available. A list of some of the better ones can be obtained from the World Institute on Disability (WID, 1996). Rehabilitation professionals might consider making such peer support programs available to clients who need training.

Increasing PAS Quality/Supply

This is a chronic problem which begs for some innovative problem solving and demonstrations. Of particular concern is the need to expand the work force that is willing to be managed by PAS recipients or their representatives. The RRTCPAS at the World Institute on Disability is beginning to explore this issue and plans to make recommendations for creative solutions. Studies to date have shown that often paid family providers are preferred by PAS program recipients because they are more reliable and dependable (Benjamin, 1998; Commonwealth Commission, 1991). There are projects around the country attempting to train people with disabilities and former welfare recipients to work as attendants.

Expanding Emergency Services

We are aware of only one place in the country - Berkeley, California - that has a citywide emergency service for people whose independent providers do not show up for work. Several counties in California that have PAS public authorities to recruit and refer attendants are trying to make emergency service available through the public authority. Planning for emergency backup by individual recipients is also part of the management training process.

Abuse Prevention

Researchers at Portland's Oregon Health Sciences Center and the World Institute on Disability are studying the nature of abuse experienced by PAS users, ways for professionals to detect it, and methods for consumers to use to confront it (Powers et al., 1997).

Racial and Ethnic Minorities

There have been many studies in the aging literature on service needs and personnel issues regarding provision of long-term services to diverse populations. WID recently completed a first step in this direction in its research on the issue. Eckles et al. (1997) found that their Asian American, Latino American and African American informants attributed the lack of PAS to culturally diverse populations to "several factors, including: a) inadequate outreach,... b) inadequate accommodation to cultural needs (such as language translation), c) economic and wage-related issues such as inadequate provider wages and concerns about employing undocumented workers, d) underepresentation of staff persons from ethnic communities in PAS agencies, e) token leadership/visibility for a few individuals in the independent living services system, and f) little or no understanding of specific cultural values and concerns about disability..." within diverse communities.

Visioning the Future

There are many organizations working on PAS legislative and regulatory change nationally, including the National Council on Independent Living (NCIL), American Disabled for Attendant Programs Today (ADAPT), and the Consortium for Citizens with Disabilities (CCD). State initiatives are springing up around the country to address the pressing need for expansion and improvement in the PAS system. These task forces involve all the PAS stakeholders, including consumers, trade unionists, Medical, rehabilitation and social service providers, government officials, and consumer advocates. Rehabilitation professionals are playing and can play an important role in the effort to chip away at the work, schooling, and marriage penalties embedded in the PAS system and in the planning to expand service availability, consumer training, emergency services, and a good quality personal assistant work force.

In the long run, the goal of many in the disability community is to achieve a system that mirrors the Recommendations from the 1991 Symposium on PAS held in Oakland, California, which built on the views of PAS consumers worldwide. This would be a cross-disability, cross-age system, which is individualized and has no penalties for working, schooling, or marriage and serves all those in need regardless of income on a sliding fee basis. We have already made progress toward these goals. If the momentum continues we will be able to see more and more significantly disabled people able to have access to "equality of opportunity, full participation, independent living, and economic self-sufficiency" (the goals of ADA). The expansion and improvement of the PAS system will continue because it makes fiscal, quality, and humanitarian sense.

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This document was made possible in part through the support of National Institute on Disability and Rehabilitation Research (NIDRR) grant (#H133B970008-98) for the Rehabilitation Research and Training Center on Personal Assistance Services (RRTCPAS) to the World Institute on Disability from the Office of Special Education and Rehabilitation Services (OSERS), U.S. Department of Education.