Prospects for a National Personal Assistance Services Program: Enhancing Choice for People With Disabilities.

This article considers the current prospects for enacting a national personal assistance services program offering services under the independent living model in this country. Many people with disabilities prefer the independent living model because, by empowering them to recruit, select, manage, and direct their own personal assistants, it offers the greatest potential to control their lives and live independently in their communities. The prospects for establishing a national program have been affected in recent years by several developments: a) further acceptance of the independent living philosophy in our society; b) several recent proposals for a national personal assistance services program; c) expansion of state Medicaid waivers allowing recipients with disabilities to receive personal assistance services in their communities; d) enhanced interest in the independent living model among the older disabled population; and e) a relative decrease in the political power of the nursing home and home health industries. This article considers these developments, concluding that they increase the political viability of a national program. It further concludes that beneficiaries should be able to receive their personal assistance services under their preferred model, and that there are important policy tradeoffs in determining whether services should be provided in-kind, in cash, or in cash equivalent.

Several years ago, my colleagues and I recommended the establishment of a national personal assistance services program organized under the independent living model for people with disabilities (Batavia, DeJong, & McKnew, 1991). Under this model, the disabled person is considered a self-directed active recipient of services who recruits, selects, trains, manages, and directs his or her own "personal assistant." This model may be contrasted with the traditional informal support model, in which an unpaid family member or friend provides such services, and with the medical model, in which the assistant is a trained healthcare worker supervised by other healthcare professionals. We argued that the independent living model is most consistent with the goals of the majority of people with disabilities to control their lives, and to live as independently and productively as possible in their communities.

We further contended that a national program, or at least a coordinated national policy, is necessary because without it, each state would be discouraged from expanding access to personal assistance services for fear that thousands of people with disabilities would decide to move to their state to obtain the generous benefits. Conversely, we were concerned that some states might actually reduce their benefits in an effort to dissuade people with disabilities from being in their programs. These concerns about a "race to the bottom," in conjunction with the horizontal equity concern that people with identical disabilities had vastly different levels of access to personal assistance based upon geographic location, suggested a strong case for a national program or coordinated policy (Batavia, 1993). Others have similarly recommended the establishment of a national program, and some have also made specific proposals (Litvak, Zukas, & Heumann, 1987; Nosek, 1991).

Since that time, several important developments have occurred that affect the feasibility of a national program. In this article, I will consider these developments and how they are likely to affect the viability of establishing a national program. I will then consider two major policy issues that must be considered in establishing a national program: 1) whether to provide personal assistance services in-kind (i.e., through the direct provision of services) or by providing the individual with a disability cash or a cash equivalent (such as a voucher, medical savings account, or tax credit) and 2) whether, in addition to the independent living model, services should be offered under other models, such as the medical model.

Further Acceptance of the Independent Living Philosophy in Our Society.

Thirty years ago, the notion that a large proportion of people with "severe disabilities" could live independently in the homes and communities of their own choosing was, for the most part, wishful thinking. Although a relatively small percentage of these individuals did achieve such independence, they were primarily individuals with access to significant financial resources. They were the exception to the rule; the vast majority of people with major disabilities lived in institutions or in the homes of family members who took care of them without any compensation. The amount of autonomy and freedom that most individuals with disabilities were able to exercise depended in large part on the amount of assistance available from institution employees, volunteers, and family members. Many were--and many continue to be--severely limited in their freedom (Nosek, 1991).

The independent living movement was established in the early 1970's largely by people with disabilities in response to these circumstances (DeJong, 1979). The fundamental premise of the movement was that barriers to independent living must be removed so that people with disabilities could live independently and productively in their communities. One of the cornerstone policy issues of the movement was, and continues to be, access to home and community-based personal assistance services provided under the independent living model (DeJong & Wenker, 1983). Without such access, individuals with substantial functional limitations who do not have substantial financial resources either are not able to live in the communities as they choose or must rely upon the charity or altruism of others in order to do so. Access to personal assistance is also key to maintaining good health for many people with disabilities (DeJong, Batavia, & Griss, 1989; Nosek, 1993).

Thirty years later, we are in the midst of what may be described as a paradigm shift concerning the societal expectations of people with disabilities. Although many individuals in our society continue to adhere to the old view that people with disabilities are not capable of living independently and productively in their communities, large segments of our society now believe that they have this capability. Moreover, perceptions of the competence and capability of people with disabilities are being reinforced by reality--the growing numbers of people with disabilities who are living in their communities successfully. Denying the ability of disabled people to live independently is difficult when interacting with them on the job and at the grocery, the theater, and the city hall.

Moreover, the majority of Americans now actually support the independent living goals of people with disabilities. This support was demonstrated politically through the enactment of the Americans with Disabilities Act of 1990 (ADA), a comprehensive civil rights law with the purpose of ensuring inclusion of people with disabilities in all aspects of our society. ADA, which represents the culmination of the first major stage of the independent living movement, also has provided a strong impetus for the expansion of the movement. The increased accessibility of our society resulting from compliance with and enforcement of ADA, in conjunction with access to new technologies (e.g., Internet, e-mail, voice recognition, reading machines, and communication devices), have enhanced the ability of people with disabilities to live independently. These factors have also facilitated the ability of disability rights leaders to mobilize this constituency politically.

There is now a consensus that the goal of disability policy is to ensure that people with disabilities are fully included in the mainstream of our society and have the opportunity to live independently in their communities. Disability rights advocates and researchers have argued that we must bring the goals and policies of other disability laws and programs, including the Social Security disability programs, in line with the independent living goals of ADA (National Council on Disability, 1986, 1988; DeJong & Batavia, 1990). This growing consensus both within the disability community and among the public at large suggests that there will be growing political support for a program that allows people with significant disabilities to live independently. The public support is likely to be greatest if the program can be funded primarily from a reallocation of resources from existing disability programs that are not as consistent with the independent living model goal (i.e., public funding for nursing homes and home health agencies).

Recent Proposals for a National Personal Assistance Services Program

A variety of national legislative proposals for personal assistance services programs have been set forth over the past two decades (Batavia, DeJong, & McKnew, 1991). None of these have been enacted at this time. Most of the bills did not receive substantial political support, in part due to lack of understanding on the part of most legislators concerning personal assistance services under the independent living model and to the well-organized political opposition of the nursing home and home healthcare industries. A few of these proposals achieve their financing through reallocating resources from these industries that operate under the medical model to consumers under the independent living model. However, none of these proposals received significant public attention.

One proposal that was noticed, at least within the disability community, was the Clinton Administration's personal assistance policy within its massive healthcare reform proposal in the 103d Congress (Health Security Act, 1993). There were two major components of this personal assistance proposal. The first component involved a new federal program administered by the states, organized in some ways similar to the Medicaid program but without strict entitlements, to expand the provision of personal assistance services. This was directed primarily at the nonworking population of people with disabilities who were Medicaid recipients and the working poor. The second component entailed a tax credit for the cost of personal assistance services. This was directed primarily at the working disabled population and was intended to reduce the enormous financial burden that a working person who requires substantial personal assistance services must bear. In my opinion, this was a sound and fairly comprehensive proposal and one of the few intelligent aspects of the Clinton healthcare plan.

More recently, the Medicaid Community Attendant Services Act (H.R. 2020), commonly known as MiCASA, was introduced in the 105th Congress. The main objective of this legislation is to expand coverage of personal assistance services by allowing the allocated Medicaid funds to follow the individual to whichever setting he or she prefers to receive personal assistance services. Specifically, this bill allows Medicaid recipients who are eligible for nursing facility services or intermediate care facility services to choose, if they wish, to use these funds for "qualified community-based attendant services" in the "most integrated setting appropriate to the needs of the individual." This bill, which significantly is sponsored by Speaker of the House Gingrich, currently has bipartisan support.

When the first bills for national personal assistance services programs were developed, very few politicians or their staff members understood what personal assistance services are and why they are so important to many people with disabilities. Many still do not understand these issues adequately. However, over time, there has been a learning process associated with the political process of developing, marketing, and considering these bills. Now, for the first time, there appears to be a critical core of Senators, Congressmen, and their staff people on Capitol Hill who are knowledgeable of personal assistance services, particularly at the committee level (e.g., the Senate Finance Committee). Each new bill increases the understanding of the Congress on this issue and increases the grassroots organization of the disability community for lobbying for this bill. Eventually, assuming that an acceptable financing mechanism can be found, the threshold may be passed for enacting a comprehensive national program.

Expansion of State Medicaid Waivers for Personal Assistance Services

Under substantial political pressure from disability rights groups, and not willing to wait for establishment of a national program, several states have used the waiver authority under the Medicaid program to establish their own statewide personal assistance services programs under variations of the independent living model (Doty, Kasper, & Litvak, 1996). These programs have served as a natural experiment on the financing and provision of personal assistance services. Analysis of their structures, functions, and outcomes has provided valuable information for purposes of establishing a national program (Kennedy & Litvak, 1991; Egley, 1994).

Enhanced Interest Among Older People in the Independent Living Model

As the baby boom generation approaches senior citizen status, interest in the independent living model of personal assistance services is likely to grow substantially. Even the current generation of older Americans indicates a growing strong desire to maintain control of their lives to the extent possible if they become disabled (Glickman, Brandt, & Caro, 1994; Doty, Kaspar, & Litvak, 1996). However, this generation did not grow up with people with disabilities who live independently in their communities. They are, therefore, not very familiar with the independent living model and its potential to allow them to maintain autonomy in the event that they become disabled. Many of them are resigned to receiving long-term care services in a nursing facility, if such assistance becomes necessary, but they dread the day that they must leave their homes permanently.

In contrast, the aging baby boomers (and the generations that follow) are much more likely to have some familiarity with the independent living model, or are much more likely to be advised of the existence of this model at the time they become disabled. Their peers with disabilities express a high level of satisfaction with this model (Beatty, et al., 1998.) and have experienced positive health outcomes under it (Nosek, 1993). Already, in response to market demands, long-term care policies are being established that provide a cash benefit that may be used for purchase of personal assistance services under the independent living model. Many baby boomers and members of younger generations who have witnessed firsthand their grandparents' and parents' loss of autonomy when receiving nursing home care or home health services under the medical model have determined that they want a different approach for their own long-term care.

This change in attitudes among the near retirement and younger populations, which is in part a consequence of the broader paradigm shift that is occurring, again suggests that a national personal assistance program is likely to become more viable in the coming years.

Relative Decrease in Power of the Nursing Home and Home Health Industries

Perhaps the strongest reason that the independent living model of personal assistance services has not grown as rapidly as feasible is that healthcare providers that benefit from the status quo have rigorously opposed it (Batavia, DeJong, & McKnew, 1991). Their primary argument has always been that people with disabilities will be harmed under the independent living model and that providers who are either professionally trained or supervised by healthcare professionals are necessary to ensure quality and avoid negligence or abuse. This argument has lost much of its strength in recent years as evidence has mounted concerning negligence, abuse, and rampant fraud in the nursing home and home health industries. Policymakers have realized that the appropriate comparison is not between one model that is subject to problems and another model that provides perfect patient care, but rather between two models that are potentially subject to quality and abuse problems. The policy challenge is to provide services under the model preferred by the consumer in a manner that minimizes the likelihood of problems.

The problems identified in the nursing home and home health industries have compromised their public image, adversely affecting their political clout at both the federal and state levels. When providers dominated the healthcare system, prior to the 1980's, industry trade associations were highly effective in their lobbying efforts to eliminate potential competition. As the healthcare field has become more and more payer-dominated, and to some degree consumer-dominated, the lobbying effectiveness of provider groups has been diminished relative to other interests. This is particularly true concerning components of the industry that have been under attack for reasons concerning fraud and/or quality of care issues, such as nursing homes and home health agencies.

This is certainly not to suggest that these industries have lost their political power altogether. In fact, some nursing facilities and home health agencies have probably gained power through consolidating with large healthcare systems with significant resources for lobbying. However, as industries, overall they have lost power relative to competing political interests such as people with disabilities who have become more organized politically in the past decade, as evidenced by enactment of ADA. This relative increase in the political clout of people with disabilities as a potential voting block may accrue to the benefit of the independent living model and programs organized under it.

Two Key Policy Choices

A broad array of policy choices must be made in establishing a national personal assistance program. Many of these choices have been discussed previously and will not be reconsidered here (Nosek, 1991; Batavia, DeJong, & McKnew, 1993; Kennedy, 1993). However, two major issues have not been considered extensively--whether benefits should be provided in-kind or in cash and whether services should be available under models other than the independent living model (such as the medical model).

Benefits In-Kind, in Cash or in Cash Equivalent.

Currently, most state programs provide services in-kind. This means that a determination is made by the program as to how many hours of services the consumer may receive under the program and the consumer receives those services. The consumer does not pay for the services directly; the program does so on behalf of the consumer. Some of these programs are structured to allow significant consumer direction and control. However, most do not, and few entail the amount of consumer choice built into this model that would exist in a program in which the consumer controls the funds (Nosek, 1991; Batavia, DeJong, & McKnew, 1993; Kennedy, 1993)

A few programs actually allow the consumer to control the funds. The most prominent of these programs is the Aides and Attendant Allowance program of the Department of Veterans Affairs, which provides cash benefits to disabled veterans based upon an assessment of their personal assistance requirements (Batavia, DeJong, & McKnew, 1993). This program applies only to eligible disabled veterans and is an exception to the general rule that services are provided in-kind. A few states and several nations have also been experimenting with cash payments for personal assistance services (Cameron & Firman, 1995).

However, the fact that the model of in-kind personal services dominates at the current time does not mean that these services must be or should be provided in-kind (Batavia, 1996). Presumably, if all other factors were equal, the individual with a disability would prefer a cash benefit to an in-kind benefit of equal value. The cash benefit would offer far greater flexibility for the individual to pursue his or her independent living goals. However, for a variety of reasons, some people with disabilities currently prefer the benefits they receive in-kind rather than in cash, and many policymakers prefer to offer them in-kind.

From the perspective of the policymaker, who is accountable to the taxpayers financing these programs, a cash benefit does not provide the assurance that the money will be spent in a manner that would satisfy taxpayer concerns. This assurance is critical to ongoing political support for the program. For example, a cash benefit might be used by a beneficiary for better nutrition or housing. While this may be a rational decision on the part of the beneficiary, taxpayers who believe that they have paid for personal assistance services, not a higher standard of living generally, may resent this use of program funds. Some policymakers do not trust beneficiaries to make accountable decisions. In the worst case scenario, policymakers are concerned that some beneficiaries may use the cash for entirely unjustifiable purposes, such as the purchase of alcohol or illegal drugs. Such relatively rare cases, which are occasionally revealed through the press, can jeopardize support for an entire program.

From the perspective of beneficiaries, an equivalent cash benefit has two significant downsides. First, they are concerned that a cash benefit does not guarantee the ability to purchase the service previously obtained through the in-kind benefit. Second, they are concerned that, even with such reforms, there will be a political tendency for the cash benefit to be set below the level necessary to obtain adequate services.

The concept of using a cash benefit, in conjunction with counseling services available to the consumer, is currently being tested in a major research and demonstration project called the Cash and Counseling Demonstration and Evaluation Project, funded by the Robert Wood Johnson Foundation and the Office of the U.S. Assistant Secretary for Planning and Evaluation at the Department of Health and Human Services (see article by Simon-Rusinowitz in this issue). The results of this project will provide significant insight into whether a program that uses cash payments directly to the consumer is economically and politically feasible (Simon-Rusinowitz, et al., 1998).

An alternative to the strict cash approach that may better satisfy the concerns of some policymakers is a model based on "cash equivalents." A system based on vouchers, Medical Savings Accounts (MSAs)(1) or tax credits that would provide a cash equivalent limited to the purchase of specified services will satisfy the accountability needs of many policymakers. With respect to a tax credit, making it "refundable" and therefore available to individuals with no tax liability could equitably provide support for all individuals who require services. Whether this cash equivalent approach is feasible will depend largely on whether it can be structured to satisfy the significant concerns of beneficiaries and policymakers. In specific, there would have to be some assurances that the voucher, MSA, or tax credit would be sufficient to obtain the needed service over the long term and that it would not be unduly subject to fraud and abuse.

What About Those Who Want Their Personal Assistance Services Under Another Model?

As indicated above, my colleagues and I recommended establishment of a national program based on the independent living model. This raises a key question. What should we do about requests by people with disabilities to receive their personal assistance services under a different model? Some purists within the independent living movement would not allow services to be provided under other models, and particularly the medical model, as options. My view is that this position is paternalistic and unacceptable. Who are we to determine which model should be available to other individuals with disabilities? Even if we are entirely convinced that the independent living model is in the best interest of people with disabilities, we should not impose that judgment on the entire disability community.

For example, I have a friend with quadriplegia who decided that he prefers to live in a nursing home. Although I disagree with his conclusions as they apply to my own situation, his rationale is entirely sound and unrefutable. He contends that the nursing facility that he has chosen, which is a high-quality facility, offers him the security that he desires in living his life. Unlike someone who receives personal assistance services in their homes under the independent living model, he never needs to spend any time or money advertising for and interviewing personal assistants. He never has to fill out all the paperwork concerning taxes, unemployment insurance, and workers' compensation.

This raises another important point concerning the independent living model that rarely receives much attention. The model, at least in its pure form, imposes a large administrative burden on the individual with a disability. The government treats people with disabilities who employ personal assistants just like any other employer, including the filing of quarterly tax and unemployment insurance forms. These responsibilities can be extremely onerous, and are clearly a downside of the strict independent living model. A modified version of the independent living model could use independent living centers or other nonprofit entities to alleviate this burden for people with disabilities.

The independent living model is not for everyone. It is probably not for someone who has very limited capacities for self-direction (although a modified version of the model that uses surrogacy may be applicable to such individuals). It may not be for someone who has a limited desire for self-direction. It is also probably not for someone who is unable or unwilling to cope with risks, because there are definitely risks associated with bringing strangers into one's home and with receiving care from a person who is not adequately familiar with disability-related problems. Under the independent living model, the individual with a disability is responsible for screening, training, and monitoring personal assistants; a mistake in any of these processes can be fatal. However, nursing homes and home health agencies are also far from perfect in screening, training, and monitoring their employees and, therefore, present similar risks.

The independent living model is for the majority of the disabled population who want to control their lives and are willing to bear the responsibilities and risks for doing so. These individuals should have consumer-directed personal assistance services available to them in their homes and communities. Therefore, in establishing a national personal assistance services program or policy, I would insist upon the independent living model being a primary option for people with disabilities. Beyond that, the government should adopt a neutral posture, neither favoring nor disfavoring any particular model. The person with the disability should be allowed to choose the model under which he or she receives services. All bias in favor of institutional providers, such as nursing homes and home health agencies, should be eliminated.

Conclusions

Access to personal assistance services often means the difference between a free life in the community and a severely restricted life in an institutional setting. Even in the best institution, an individual with a major disability cannot choose exactly when to get out of bed, to bathe, to dress, to eat, to pursue his or her interests, and to return to bed. Individuals who require full-time personal assistance (e.g., attendant care) and who cannot obtain those services are not able to live in their communities. If people with disabilities who are recipients of Supplemental Security Income, Medicaid, and other government benefits will eventually lose their personal assistance as a result of accepting employment, it is not in their interest to accept a job that does not provide longterm assurance of at least comparable benefits, or their cash equivalent. Many people with disabilities indicate that they would strongly prefer to receive their personal assistance services under the independent living model. However, the best way to determine the actual preferences of people with disabilities is through the choices that they make under a neutral program that allows them to choose among a broad array of long-term care/personal assistance options. The prospects for establishing a national program that offers such choice appears to have increased in recent years as a result of the five recent developments discussed in this article. Specifically, the political acceptability of a national program has grown with the

* increasing public acceptance of the goals of the independent living movement,

* increasing acceptance of the independent living model by older people with and without disabilities,

* specific proposals that have been advanced,

* insights obtained through Medicaid waiver programs for home and community-based personal assistance services, and

* decreasing clout of the healthcare interests opposed to the independent living model.

This does not mean that enactment of a personal assistance services program is inevitable. Nothing in the political arena is inevitable, and the establishment of any new national program--particularly at a time of conservative retrenchment from large national programs--is a longshot. Certainly, there is almost no chance of establishing a new open-ended entitlement program. However, the odds in favor of enacting a fiscally responsible program, with substantial controls against fraud and abuse, are now better than they have ever been. Whether such a program will be enacted will depend largely on whether the economy continues to expand and whether disability rights activists will be successful in getting their message through in a manner that is consistent with the goals of policymakers.

Opponents will argue that this is just another wasteful big government program. Politicians and other policy-makers will have to be informed that we are not establishing a massive new program from nothing. Rather, we are replacing an array of poorly coordinated programs currently costing the taxpayers tens of billions of dollars that are not adequately meeting the needs of people with disabilities with a well-coordinated program that meets their needs based on their preferences.

Note

(1.) An MSA is a tax-advantaged savings account, similar to an Individual Retirement Account (IRA), which could be used for certain specified purposes (e.g., medical costs, long-term care, personal assistance services) and could accumulate from year to year (Goodman and Musgrave, 1992).

Bibliography

1. Batavia, A.I. (1996). Health care, personal assistance, and assistive technology: Are in-kind benefits key to independence or dependence for people with disabilities? In J.L. Mashaw, et al., (Eds.), Disability, cash benefits and work. Kalamazoo, MI: W.E. Upjohn Institute for Employment Research.

2. Batavia, A.I. (1993). Health care reform and people with disabilities. Health Affairs 12(1), 40-57.

3. Batavia, A.I., DeJong, G., & McKnew, L. (1991). Toward a national personal assistance program: The independent living model of long-term care for persons with disabilities. Journal of Health Politics, Policy and Law 16(3), 525-547.

4. Beatty, P.W., Richmond, G.W., Tepper, S., & DeJong, G. (1998). Personal assistance for people with physical disabilities: Consumer-direction and satisfaction with services. Archives of Physical Medicine and Rehabilitation 79(6), 674-7.

5. Cameron, K. & Firman, J. (1995). International and domestic programs using "cash and counseling" strategies to pay for long-term care. National Council on the Aging, Washington, DC.

6. DeJong, G. (1979). Independent living: From social movement to analytic paradigm. Archives of Physical Medicine and Rehabilitation 60, 435-446.

7. DeJong, G., Batavia, A.I., & Griss, R. (1989). America's neglected health minority: Working-age persons with disabilities. The Milbank Quarterly, 67 (Supplement 2, Part 2), 311-351.

8. DeJong, G., & Batavia, A.I. (1990). The Americans with Disabilities Act and the current state of disability policy. Journal of Disability Policy Studies, 1(3), 65-75.

9. DeJong, G. & Wenker, T. (1983). Attendant care as a prototype independent living service. Caring 2(2), 26-30.

10. Doty, P., Kasper, J., & Litvak, S. (1996). Consumer-directed models of personal care: Lessons from Medicaid. Milbank Memorial Fund 74(3), 377-409.

11. Egley, L. (1994). Program models providing personal assistance services (PAS) for independent living, Oakland, CA: World Institute on Disability.

12. Goodman, J.C., & Musgrave, G.L. (1992, January). Controlling health care costs with medical savings accounts, (NCPA Policy Report No. 168). Washington, DC: National Center for Policy Analysis.

13. Kennedy, J. (1993). Policy and program issues in providing personal assistance service. Journal of Rehabilitation (July/August/September), 17-22.

14. Kennedy, J., & Litvak, S. (1991). Case studies of six state personal assistance services funded by the Medicaid personal care option. Oakland, CA: World Institute on Disability.

15. Litvak, S., Zukas, H., & Heumann, J.E. (1987). Attending to America: Personal assistance for independent living. Berkeley, CA: World Institute on Disability.

16. National Council on Disability (1986). Toward independence. Washington, DC: National Council on Disability.

17. National Council on Disability (1988). On the threshold of independence. Washington, DC: National Council on Disability.

18. Nosek, M. (1993). Personal assistance: Its effect on the long-term health of a rehabilitation hospital population. Archives of Physical Medicine and Rehabilitation 74(2), 127-32.

19. Nosek, M. (1991). Personal assistance services: A review of literature and analysis of policy implications." Journal of Disability Policy Studies 2(2), 1-17.

20. Simon-Rusinowitz, L., Mahoney, K., Desmond, S.M. et al. (1998). Determining consumer preferences for a cash option (AQ1): Arkansas survey results. Health Care Financing Review, (in press).

Send Correspondence to:

Andrew Batavia
2845 Prairie Avenue
Miami Beach, Florida 33140
Telephone: [phone]
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The views expressed are solely those of the author, and do not necessarily represent the positions of Florida International University or any other organization with which Mr. Batavia is affiliated.

Mr. Batavia is Associate Professor, School of Policy and Management, College of Urban and Public Affairs, Florida International University, North Miami, Florida.