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Home Care Benefits for Persons with Disabilities.

Nearly 49 million people over age 5 (19.4%) have a disability of some type. Of these, 24.1 million have a severe disability. Of the noninstitutional population over age 5, 4 percent (9.2 million people) need personal assistance with one or more activities of daily riving (ADL's), such as bathing and dressing, or an instrumental ADL, such as shopping or cooking. One percent (2.5 million) have a developmental disability or mental retardation. One person in seven (37.7 million) has an activity limitation, and of these 12 million are unable to perform a major activity whether it be work, school, or play depending on age. The prevalence of most physical disabilities increases with age, while the prevalence of mental retardation/development al disabilities (MR/DD) is highest among those under age 18.

Persons with disabilities (PWD's) of all types and all ages usually prefer to live at home rather than in institutional settings; and policymakers, professionals, and families tend to concur. The impacts of chronic and disabling conditions can be ameliorated by home- and community-based (HCB) services such as personal care, homemaking and chores, transportation, and day center care. Under current benefit and service systems, HCB care is differentiated from "skilled" or "home health" care. The latter is covered under medical insurance--typically for a period of recovery after an acute condition, but also for ongoing care that requires supervision of a physician or involvement of a nurse or therapist (Bishop & Skwara, 1993). The shortcomings in current United States HCB service and benefit systems have led service users and policymakers alike to consider radical changes in those systems, including simply giving cash to users to buy services on the market. Before examining cash alternatives, current shortcomings should be understood.

Institutional spending bias: Despite preferences for home care, the bulk of public long-term care (LTC) funds are spent on institutional care. In 1994, 81 percent of Medicaid's $45.6 billion in LTC spending was on institutional care (61% on regular nursing facilities and 20% on intermediate care facilities for persons with mental retardation). Of the 19 percent spent on HCB care, $3.9 billion went to HCB waiver services, $3.0 billion to personal care, and $1.6 billion to home health (Graves and Bectel, 1996). Other public funders of HCB services don't make up for the disparity (AARP, 1995; Alecxih, Corea, & Kennell, 1995; Pepper Commission, 1990; Wiener & Sullivan, 1995). For example, in 1993, other state and federal spending on HCB services for elders amounted only to $2.1 billion (Committee on Ways and Means, 1996). Medicare spending on home health has been rising rapidly, from $2.8 billion in 1988 to $15.7 billion in 1995 (Mauser, 1997), and most of the new spending has been on home health aides for long-term patients (Welch, Wennberg, & Welch, 1996). However, Medicare is an expensive way to deliver HCB services, access varies tremendously geographically, and the 1997 Balanced Budget Act provisions are intended to rein in growth through both managed care and new incentives on home health agencies themselves. Private insurance systems do very little to fill the gaps in home care benefits, and disability insurance is designed to replace wages not pay for services. The number of LTC insurance policies sold is rising rapidly, but policies are affordable only to the well-off (Crown, Capitman, & Leutz, 1992; Rivlin & Wiener, 1988). This may explain insurers' expectations that half of the policies they sell will lapse in 5 years and that 65 percent will lapse in 10 years (GAO, 1993).

Services not benefits: The multiplicity of small HCB care programs--often aimed at particular groups of PWD's--makes for a fragmented, underfunded, and confusing patchwork of services. And aside from Medicaid personal care, care is offered through service programs rather than a benefit system. A "benefit" implies access to a set of covered services on an equitable basis for a defined group of eligible individuals. Benefits need not be entitlements in the sense that no limits are put on access (e.g., gatekeepers, discrete resource limits), but true benefits should be adequate to address the needs of all eligibles equitably. In contrast, a service program can establish waiting lists and make no pretense of meeting needs. Although some states have done better than others both to increase resources for home care and to strengthen the service delivery infrastructure (Leutz et al., 1992), eligibility, choice, and coordination problems are widespread.

Gaps in eligibility: Because HCB services are optional state benefits under Medicaid and because there are numerous smaller HCB service programs aimed at particular groups of PWD's, there are differences both across and within states in which groups of PWD's receive public support, how much they receive, and under what conditions (Liu, Hanson, & Coughlin, 1995; Leutz et al., 1992). The result is a system of "haves" and "have nots," with some families and PWD's stuck in "no care zones" in which their age, disability status, location, or income exclude them from assistance which they formerly had or which others with no greater apparent need seem to enjoy (Kassner & Martin, 1996; Litvak & Kennedy, 1991).

Confusing choices: "Choice" has become an anthem for critics of HCB care systems--and with good reason. Fragmented funding and administration leave new users struggling to understand their options with confusing choices among programs that offer only partial solutions (Baldwin & Twigg, 1991), while care management tools administered to those who find their way seldom ask users and carers how they see needs or what help they want (Leutz & Sciegaj, 1997). Creating single entry points to benefits and then listening to what users want are first order choice priorities which few states have addressed adequately (Leutz, et al., 1992).

Poor coordination with related service systems: For PWD's of all ages, HCB systems overlap with related systems of benefits and care, particularly health systems (Leutz, 1994; Leutz et al., 1995; Schlesinger & Mechanic, 1993; Tanenbaum & Hurley; 1995; Williams & Weissert, 1994). Coordinating with these systems is an opportunity to improve quality and efficiency, but the opportunity too often is missed in the face of time, cost, conceptual, turf, and logistical barriers to integration (Leutz, forthcoming). Emerging managed care approaches that integrate the finance and delivery of acute and LTC move eligibility, choice, and coordination problems into the interior of private healthcare systems. The hope is for better care and enriched benefits, but there is also the possibility that tighter management will reduce HCB benefits by imposing tighter eligibility definitions and closer management of utilization (Schlenker, Shaughnessy, & Hittle, 1995).

Conflict with income support programs: Two key provisions in U.S. income support systems for PWD's affect HCB care. First, unlike some European countries (Evers, 1995), disability and retirement benefits are not available in the United States on the basis of providing family care to a PWD. Second, health and LTC benefits that are linked to Supplemental Security Income (SSI) are lost when beneficiaries' work puts them over income limits. This is one reason that PWD's have low incomes (Davis & O'Brien, 1996), and the fact must be considered in designing coinsurance for HCB care.

Few members of the general public understand these deficiencies in HCB benefits until they need them. Most people expect that their health insurance or the broader "welfare state" will protect them. But policy experts know that the earth is still flat in the world of LTC. When you get to where you need it, you may fall off into the abyss--along with your money, your family, and your dignity.

In the early 1990's, policymakers considered filling gaps in HCB care benefits nationwide through new service and income entitlements for PWD's and their families (Clinton, 1993; Rowland, 1989; Pepper Commission, 1990) Models and momentum for some proposals were built on concurrent European initiatives, some of which went forward (Evers, 1995). Just a few years later in the United States, these proposals seem not only remote but discredited. The very notion of universalistic social welfare programs is in retreat in the face of attacks from the top by those who believe that private markets solve problems better than government and from the bottom by libertarian ideas fueled by frustrations with government regulation and overbearing professionals. The transformation of "clients" and "patients" who "need care" into "consumers" seeking "choice" in social welfare "markets" is symbolic of the change in thinking, which again is most clearly analyzed in Europe (Barnes & Walker, 1996; Taylor-Gooby, 1994).

The HCB benefit model that is benefiting most from these new dynamics is to simply give PWD's cash to buy what they want to meet their perceived needs. As discussed below, cash systems can vary regarding how the payment level is set, what cash can buy, what administrative supports are offered, and how closely user status is monitored. A large "cash and counseling" demonstration is now underway in several states (NCOA, 1997). As all states gain flexibility in the use of disability care funding streams through block grants and other mechanisms, the opportunity to create cash benefits will increase.

In Section II, I critically review cash benefit approaches and suggest safeguards and options that should be included. Although there are strong reasons to give service users more control--including the option of taking cash--we must be careful to recognize and respond to cash's ideological and practical pitfalls. Market rhetoric has great appeal, but there are dangers in turning the care for PWD's into commodities and trusting that the market will respond. Market failures, competitive abuses, and exploitation of carers are possibilities. Also, cash will not work equally well for all PWD's, which means that public administrative savings may not be realized.

In Section III, I offer a companion approach to strengthening home care benefits in light of changing political and ideological realities. I propose that we make conscious and material efforts to help communities promote and develop services. This may seem like an idealistic and nostalgic swim against commercial tides in human services, and much work needs to be done on defining community and how to support it. But given the alternatives, the effort seems worthwhile.

In Section IV, I summarize the recommendations in light of current home care policies and programs. The state of our political economy precludes a proposal for extensive expansions of benefits, but the analysis and recommendations are relevant to the narrow spaces where home care benefits currently exist and point to ways that those spaces could be extended to round out coverage in the flat world of LTC.

Cash for Home Care: Avoiding the Trap of Consumerism

This section examines the promises and pitfalls of giving PWD's cash to buy care. I will argue that a free market application of the consumerist model is unlikely to yield home care benefits that many people either want or need without extensive regulations and supports. Moreover, the market offers what for many may be hollow answers: purchased services rather than places in society; commodities rather than communities. Much of the enthusiasm for cash and counseling comes from European models (Laing, 1993; Keiger & Stone, 1994), but European experience is not extensive, and many observers have concerns. At least six areas of concern stand out.

Does favoring choice require throwing out professionals? Given the strong currency of the choice concept (Social Services Inspectorate, 1995; Tyne, 1994; Vladeck, 1995), it is important to examine what choice means in home care and when giving cash and a market choice makes sense. Long-term home care often presents circumstances in which user choice and control are important, for example, regarding "who and how" when service is intimate, personal; regarding place and time; and regarding long-term arrangements. This describes the circumstances of working-age persons with physical disabilities (Batavia, DeJong, & McKnew, 1991). Being able to hire, train, and supervise an aide to provide this care is the classic case for giving cash to PWD's.

However, as one of my reviewers pointed out, "Choice has an ideological 'patina' that makes choice seem good, in and of itself, regardless of unintended consequences." Letting consumers shop around with cash may not be the appropriate answer in crisis situations or in cases where care is skilled. "Making choices implies judging and action, when what we may want is to have our needs met. Having to make a choice may be unwelcome if it causes delay or uncertainty ... Choice is experienced as risk" (Barnes & Prior, 1996:5). Thus, cash and the free choice it promises are valuable to address some care needs but not others.

What will the market supply? Market enthusiasts assume that private providers will respond to newly empowered consumers with choices for innovative home care products. There is no assurance that this will happen, particularly in small markets, or that providers will be experienced, honest, or qualified. Even where there are options, consumers need experience and skill in making choices, good information about quality and the terms of purchase, and the funds to afford the choices (Pijl, 1994). Individual consumers may not be able to negotiate prices and terms of service that are as favorable as the state's bulk purchasing power. There is also the potential that large and well-financed home care firms will drive out smaller local firms through predatory pricing, hard sell advertising, hiring away staff, and other well-tested practices of would-be monopolists. There is nothing in the nature of "free" markets that gives confidence that unsatisfactory results will be avoided without regulation and other supports (Kuttner, 1997).

Will cash mean cuts in care? If cash attracts more users to the system, and if total spending is not increased, it follows that the amount of cash given to each user must be less than would have been spent on individual care plans for agency services. Cash advocates' contentions that users will find and buy services more economically also supports the idea of lower spending per user. What level is adequate is not clear: The new German home care plan pays half of the formal care plan costs in cash (Evers, 1994). Early experience is that more than 80 percent of users take it. However, benefits are not income-tested, so most (but clearly not all) people can afford to supplement. Supplementation will be all but impossible for Medicaid users under U.S. cash and counseling models. A related concern is whether the cash is seen as the end of responsibilities for public programs, or whether other supportive services that are difficult to buy on the market will be available. Inadequate cash grants without supportive services could increase isolation and risk.

What infrastructure supports will be needed? Virtually all European systems require a payment system and an assessment/reassessment to determine the level of payment. Most systems add (1) oversight to ensure funds are spent on services (unless vouchers are used), (2) some monitoring of quality, satisfaction, and outcomes, and (3) a scheme to help users maintain the records and controls needed to comply with tax, reporting, and other system requirements. Additionally, regulatory and perhaps legislative actions are required to clarify various legal issues (e.g., how payments affect user and carer eligibility for other service and entitlement programs, and whether minimum wage laws apply and how they will be enforced). Finally, current case management systems will need to be maintained for those who do not choose cash, and new case management systems will be needed to assess and monitor those who do, including more extensive support for those who are not able to manage the cash on their own. For example, in the United States, PWD's who employ their own aides must maintain Federal Insurance Contribution Act (FICA) tax recording. Thus, if policymakers reduce administrative expenditures under a cash grant system, we should expect confusion and inefficiency at best and scandal and exploitation at worst (Leat & Ungerson, 1994).

Will family members and other carers be treated fairly? Giving PWD's cash to buy care introduces potential conflicts between family carers and PWD's, including whether users or family members control the cash and whether cash is used to support family carers (e.g., respite). By all accounts, family carers provide at least two-thirds of the help that PWD's receive (Fischer & Eustis, 1994; Kahana, Biegel, & Wykle, 1994; Tennstedt, Crawford, & McKinlay, 1995; Twigg & Atkin, 1994). The large majority of family carers are women, who may already have other family obligations and who often make career sacrifices to provide care. Some feminists' oppose encouraging family care (as would be the case if cash were allowed to pay family members), but others value womens' caring nature, accept that caring opportunities/obligations will present themselves at various points in peoples' lives, and focus on how fairly to support caring with adequate programs (Baldwin & Twigg, 1991; Evers, 1994; Johanss0n & Sund-strom, 1994; Lingsom, 1994). They favor an "emancipation policy" that includes fair wages and benefits, limits on amounts of informal care, and various other supports: facilities for day care, holiday leave, professional support, skills training, insurance, buildup of pension rights, and a network of informal carers (Pijl, 1994).

Without these types of specific guarantees, cash to family carers can continue if not expand exploitation of women. For example, one pay for care experiment in Canada found long hours, high burnout, wages at less than half the minimum, women being encouraged to quit jobs to provide care, and refusal by public sector to add services if there was a paid informal carer. The evaluation found that pay for care often created a cross between wages and welfare with work up to the welfare limit and wage cuts thereafter (Stryckman & Nahmiash, 1994).

Conflicts with nonfamily carers around hours, wages, and other conditions of work may be even sharper (Ungerson, 1994). If the government leaves these as gray areas, and workers leave agencies to become independent contractors, home care workers could lose even the few protections and benefits they now receive from employing agencies. A new type of domestic service could be created, using various categories of vulnerable people (e.g., welfare mothers, immigrants who will work for small wages and housing). These issues have always been tied up with class, gender, and race.

Should caring be a commodity? Offering cash instead of services shifts power and choice to consumers but it also makes them responsible. If that's all there is, it disconnects society and professionals from results. The over bearing professional bows out in deference to the theoretically responsive market. But if theory falls short of reality, who will we blame: economic theory or the consumer who was not a savvy shopper?

In addition to changing the relationship between the public and the PWD, commodification of family support responsibilities could upset delicate balances in these caring relationships. The idea of offering "incentives" to caregivers is misguided, since it would be aimed at the minority who do not meet their care giving responsibilities voluntarily. A Dutch study that offered cash for caring found that informal carers saw the gesture as more important than the amount of reward. "A bad relationship between a recipient and a caregiver cannot be compensated by money ... people feel a moral obligation to care." Volunteers feel similarly as only a minority would like higher compensation (Pijl, Mand-maker, Daal, & Schoonman, 1994:154) Similarly, a survey of New York City caregivers found that they valued financial incentives much less than service and emotional supports. The most desirable supports were homemaker (26%), medical care (25%), social center (12%), monthly check (10%), and general services (9%). Overall, 80 percent picked a service first, while 20 percent picked financial support (Horowitz & Shindelman, 1983). The authors were not surprised with the findings, citing earlier studies that found that the pressure with caregiving is more emotional and social than financial. Similar preferences for services over cash have been reported in Sweden (Johansson & Sundstrom, 1994).

In summary all six questions point to the need for a substantial amount of intervention and oversight in the private home care market if users are given cash as an alternative to case-managed benefits. Features include assessment and reassessment to set the level of cash payments, support for users in hiring and keeping records, monitoring of the adequacy of the level of payment based on what can be purchased, oversight of home care firms' competitive and sales practices, employment conditions for hired carers, and support to help families and users work out conflicts about the use of cash. Furthermore, the option of using traditional case-managed access to benefits will need to be maintained alongside the new system.

Free market advocates may argue that all this is unnecessary and discredited regulation of agreements that individuals can and should make on their own. The potential for abuse and neglect in LTC is so strong, however, that it is almost inevitable that payers will be required to oversee the use of public funds. There is no reason to think that such oversight will be any more successful in avoiding scandal and abuse than oversight of provider agencies, but it is likely to be required nonetheless.

Process: Community Action and Social Reciprocity

As an alternative to relying on consumerism and markets to define home care benefits, I propose a more proactive community development strategy. The United States is an extremely individualistic society, but we also have a history of collective community action on the local, state, and national levels. Community action relies on the voluntary participation of citizens; it operates primarily through democratic and open processes; and it is driven primarily by goals of collective betterment rather than individual enrichment.

The concept of community used herein is broad. Examples of community include participation in groups for self-help, advocacy, service, and advice giving. Community groups are sponsored by government, religious institutions, civic organizations, and by or on behalf of sectors of society (e.g., women, youth, elders). A very common form is the nonprofit corporation to collect and distribute money (foundations) or to provide services (innumerable voluntary agencies), but the formation of public programs in response to community action also may be seen as products of community. Other examples include community coalitions, special authorities, tenants and neighborhood organizations, and community action agencies. There are differences in the processes and powers of these various forms, and the options will differ for each community in terms of its capabilities and issue in terms of the forums available, but all are expressions of community.

This all may sound like 1960's rhetoric, and I acknowledge that advocating community action is swimming against the individualistic and market tides, particularly when it seeks support from public funds. Despite a history of community activism and volunteerism in the United States, we don't have nearly the sense of solidarity that still characterizes many European states or even Canada (Buxbaum, 1992; Clark, 1991). Even when it produces results, community action does not mean that conflicts among groups for resources will go away or that unsatisfactory solutions will always be avoided. There are "community failures" just as there are "market failures." Yet the results of successful community action are undeniable, particularly in the field of services for PWD's. The achievements of the disability rights advocates and active parents in deinstitutionalization and educational integration are testimony to the power of community action, as are the innumerable voluntary nonprofit agencies that provide health, educational, vocational, residential, and human services for PWD's.

Beyond the material results of community action, it can be a vehicle for legitimation for disability issues and integration of PWD's into the community. Isolation from community life is a common problem cited by PWD's and their families (Cooley, 1992; Hirst & Baldwin, 1994). Becoming active in formulating service strategies, agencies, and policies as well as participating in self-help and mutual-aid activities not only breaks down isolation, but also contributes to the community itself.

A foundation for the process can be found in the principle of mutual obligation or reciprocity, through which PWD's and families are acknowledged to be giving back to the community in exchange for the support they receive. Recognizing these reciprocal relationships helps to maintain community in the face of a market society which "emphasizes economic values and individualization, which breaks down communities and produces alienation" (Moroney, 1986:173). Also avoided is the residual approach to welfare: "We"--who are independent--give to support "them"--who can't support themselves. This puts the process of developing and delivering home care benefits on the basis of what communities can do together rather than the notion of what individuals are "entitled" to from the community or on the notion of what they can buy on the market. The goal of community integration suggests several process features for developing home care benefits for PWD's (Leutz, 1994).

First, communities (as embodied by PWD's, carers, concerned professionals and providers, and other supporters) can develop and encourage new services. Depending on political and community realities, these might range from sponsorship by public sector agencies--if funding can be obtained to direct services provided by nonprofits--to volunteer help lines and carer support groups. Well organized and informed communities can even adopt new taxes to support HCB care, as did one Ohio county in 1992 (Logan & Applebaum, 1995). Communities can also set expectations for user and community involvement in traditional nonprofit and for-profit providers. If communities become more active in working with all kinds of providers, heavy-handed external regulations may be less necessary.

Second, these community initiatives need resources. Medicaid should allow purchase of these services through home care benefits, rather than restricting coverage to services that meet usual licensure, quality, and reporting requirements. Direct support for organizing and infrastructure is also needed. For example, Canada launched the New Horizon's Program in 1972 to encourage older people to use their own skills and talents to combat social isolation and to address needs. This nationwide community organizing effort provides federal technical assistance and local grants for space and other direct costs but not for professional staff. The initial focus of the program, which awards 18-month grants with the possibility for one follow-up of 18 months, was on senior centers, but in 1982 initiative moved to community services, self-help, education, and self-advocacy. After 10 years, 90 percent of the 20,000 projects funded were still active (Novak, 1987). By the late 1980's, more than $200 million had been given to 32,000 programs (Clark, 1991).

Third, participation of disabled people in home care benefit design must be real rather than window-dressing. This not only may mean seats on policy and governing boards, but also developing supportive forums where service users and carers can meet to talk among themselves to formulate positions that can be taken to larger bodies. This will require support for the process and sensitivity to special needs, including thinking through how to gain fair representation of disabled people (Bewley & Glendenning, 1994), setting meetings at times and places that are convenient, offering help with transportation and communications, and putting in the staff and other resources that are needed. The Interagency Coordinating Council form used to oversee Title 5 education funds for early intervention is a good U.S. example. It includes hiring parents of disabled children in designated staff positions in state government and parents and providers meeting publicly and regularly to consider and advise on policy and program matters.

Fourth, the process should ensure that all interests are represented fairly. Consumerism is an individualist notion--maximizing one's own needs and satisfaction without reference to others with similar needs. Care needs to be taken that participatory processes are inclusive, since they can go wrong too, through a tyranny of majority or domination by the articulate middle class, for example (Barton, 1993). Empowerment of one person should not result in exploitation of another (Barnes & Walker, 1996). Coalitions among different groups of PWD's may foster more coherent disability policy rather than special treatment for the most successful groups.

Fifth, professionals and policymakers must accept and support changes in procedures, power relationships, status, and security. This will be no mean feat, since professionals have great investment and experience in running the system and will be loathe to cede territory (Schorr, 1992). Furthermore, service users are conditioned to deferring to professionals or, at least, telling them what they seem to want to hear (Clark, Dyer, & Hartman, 1996; Cooley, 1992). To facilitate change, professionals and policymakers should start from the proposition that "authority deriving from professional knowledge is balanced by authority deriving from the experiential knowledge of the user ..." (Barnes, et al., 1996). Empowerment of the consumer does not remove the responsibilities of those who produce services; the responsibility to learn and change remains.

Sixth, in designing home care benefits, communities should consider how needs, resources, and preferences may vary across groups and individuals. People become disabled at different points in life (e.g., birth, adulthood, and old age); this affects what a person has been able to do before he/she became disabled, including being prepared financially for the costs of disability. On another level, impairments that foster disabilities are of different types, intensities, and trajectories. The impact of a short-term disability from which a person recovers is different from a short-term degenerative disability which is in turn different from a long-term stable disability.

Finally, the types and levels of support change with the life cycles of both carers and PWD's; the community should be sensitive to these changes, valuing the help that is given and providing help when it is needed (Gerry & Mirsky, 1992). The life cycle concept helps us untangle the relative stresses and burdens of different patterns of caring and to think about how home care benefits should relate to family carers. For example, for the first year or two of life, a child with a physical impairment causing lower body paralysis may require the same care as a typically developing infant, and society considers it normal that parents (particularly mothers) provide this care as a matter of course. As the two children age, however, the former's care needs will increase--eventually to the point where he will be too heavy for the mother to lift and where (if he is male) sexual taboos may interfere with her ability to help with toileting, dressing, and bathing (Litwak, Jessop, & Moulton, 1994). And the teen turning 20 will want a life independent of his parents. These are very different family care relationships than those of a wife's caring for her husband of 50 years. Similarly, a spouse/carer of retirement age is in a different life cycle point than a daughter/carer of working age and should be able to get different help through LTC benefits.

Thus, in general, policy and programs should recognize that both the carer and disabled person have different needs for independence, work, income, recreation, pensions, pay for care, etc., at different points in their lives. If we ask people what they want, many would indicate that modest expenditures (in cash grants or service supports) would be sufficient. One of the earliest but most important studies of home care preferences found that families and users asked for less than professionals thought they should have (Sager, 1980). Different rationales apply to PWD's of different ages, types and severity of disability, different family situations, and different life cycle stages of carers. Purposes might include compensating for the costs of disability, supporting care, providing income, or to compensate carers. Current assessment and care planning approaches are not equipped to respond to diverse or idiosyncratic preferences. It will take leadership from communities and policymakers to develop the basis for this kind of response, as well as the training of resource allocators to help service users to think through and choose options.

In summary, I recognize that many will be skeptical of both the feasibility of supporting community initiatives and user empowerment, particularly in a time when individualistic and market oriented solutions are in the ascendancy. For example, in comparing long-term care in the United States and in Canada, Clark (1991) observed: "Strait jacketed by narcissistic individualism, [Americans] are unable to engage in any meaningful public dialogue on what the goals of society should be and the appropriate means for achieving them.... We substitute economic incentives and cost-cutting procedures for real social dialogue in the vain hope that these will solve what is at heart a crisis of shared values and principles.... "The commodification of care through cash and markets is consistent with the American character described by Clark, but there is another side to that character that also can be tapped. Given the activist histories of disability communities, the state and local control of disability policy, the profusion of voluntary agencies, and the widespread involvement of families in caregiving, a pro-community policy could nurture and structure that involvement and create a dialogue that leads to democratic and participatory choices, as opposed to market choices.

Policy Challenges

Like much of our social welfare programming, there are no easy choices about home care benefits. Fiscal pressures make it difficult to see sources for new federal funds without substantial realignment of current thinking about spending priorities and taxation burdens (Gist & Aleksa, 1994). Devolving responsibility to hard-pressed states and localities is more likely to result in a race to the bottom than in new funds. Yet, the numbers and needs of PWD's of all ages will rise sharply in the future, quite possibly overwhelming our already inadequate home care systems and further straining overburdened families.

My colleagues and I argued several years ago for a national home care entitlement (Leutz, et al., 1992), but a realistic benefit strategy must start where we are today, and that means states and Medicaid. Using Medicaid personal care and HCB waiver funds, supplemented by other smaller state and federal sources, there are sufficient resources in many states to pay for meaningful home care benefits for at least some groups of low income persons with disabilities. Some states also have pooled these resources to create administrative infrastructures that provide a single entry point to multiple sources of funds and that will pay for a wide range of HCB services up to benefit caps pegged at or below institutional spending.

Although some states approximate benefit adequacy in levels of resources, advocates for more choice and autonomy for PWD's have helped us to see that service users' wants and concerns are too often ignored even in the more comprehensive systems. But the call for more choice can be heeded in different ways, and how we respond will have profound consequences.

One path to choice and autonomy promises empowerment of PWD's as consumers in markets. Proponents of this path believe that public service and management systems cannot be reformed. It is better just to give people money trust that the cash will stimulate a supply of preferred and affordable services, and let people find and buy what they want. I have argued herein that the free market will not offer adequate services without extensive regulation, that unfettered competition may drive out community-based providers, that many PWD's will need financial and logistical help as consumers, and that commodification is the wrong principle upon which to base home care benefits and services.

An alternative path is to try to empower PWD's by connecting them better with more active and organized communities at both state and local levels. This position holds that public management systems and professionals can change and grow stronger by working in partnership with service users and carers. It also posits that democratic community action is the path to deciding what services are needed, to developing self-help and community provider organizations, to monitoring the performance of administrative systems and providers, and to working through the relative needs and obligations of PWD's and family members based on life cycle factors.

The option of giving users cash rather than case-managed service benefits should be developed. It is an option which many PWD's and carers clearly want. But offering the cash option does not preclude the need for other administrative, provider, and professional reforms to increase respect for choice and autonomy.

The community development strategy for home care benefits will require modest new resources in three areas. First, assessment and care management systems need overhauling to ensure that users' and carers' views of problems and needs become the starting point in care planning. Training, as well as supportive administrative and advice structures are needed. Second, various initiatives and roles for users and carers will require operational support. These may include advice lines, self-help groups, new provider initiatives, community coalitions, advocacy organizations, and participation in policymaking and oversight groups. Third, definitions of services that are covered by benefits must be expanded to include family carers, privately hired aides, expenses for volunteers, community social agencies, social transportation, and other services deemed important by users and carers.

Beyond these actions specific to support of community-based home care benefits, broader actions would help significantly. These include finding the funds to support equitable eligibility by eliminating waiting lists and "no care zones," better coordinating health and long-term care benefits, and fixing deficiencies in income support programs that discourage PWD's from working and penalize family carers in pension and disability systems.

The poor public understanding of the limits on benefits for LTC is a barrier to improving these benefits, but it is also an opportunity. If we can construct service programs that have the active support and participation of PWD's, carers, and concerned professionals and other supporters, home care benefits and their gaps will become more broadly understood. Eventually, society may be more ready to put in the resources that will be needed so desperately for all groups in the future.


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Dr. Leutz is Associate Professor at Heller Graduate School, Brandeis University.
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Author:Leutz, Walter
Publication:American Rehabilitation
Date:Jun 22, 1998
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