Dedication

To Wade Blank, who devoted his life to freeing people with disabilities from incarceration in institutions to enjoy the liberty to live and work in the community.
and
To Jerry O'Bryan, who through personal example and peer support helped dozens of people with disabilities move from nursing homes to independence in the community.

Foreword

While great advances have been made in the last decade, disability rights and independent living advocates concur that numerous barriers remain which keep people with disabilities from living independently in their communities. None can lay a greater claim to our attention than people living unnecessarily in nursing homes.

Too many people are in nursing homes because they do not have the very modest support which would allow them to live in their own homes. This absence of support can be attributed to community deficiencies, such as lack of accessible housing and lack of sufficient funding for personal assistance services, as well as to individual deficiencies, such as lack of adequate independent living skills, reluctance to take such huge risks, and lack of family support. And, it must be acknowledged, lack of leadership and aggressive action on the part of many independent living centers and disability-focused organizations.

We in the independent living field need to examine our values as well as where we are investing our energies. What are we putting in front of assisting people to leave nursing homes? No question that this is hard work and that there are numerous fronts on which battles must be fought--with nursing home administrators, with over-protective family members, with well-placed apprehension on the parts of the individuals, with state and federal legislators to obtain adequate funding for PAS, with local authorities to assure that adequate housing is available, and with exquisite planning on the part of the center to assure that services are in place, staff are prepared, and fall-back positions are established.

In this document, Bonnie O'Day has done her usual excellent job in providing a concise overview to the extent of problem. In so doing, she describes six centers across the country which have successful transitional programs, and she closes by presenting a thoughtful set of policy issues.

For those of you under-engaged in fighting this good fight, we hope that this document will lead you to considering the role your organization can take in this campaign. For those of you already involved, let us, as a research and training center in independent living, know what we can do to support your efforts.

Laurel Richards, Editor
ILRU Issues in Independent Living

Acknowledgments

Integral to the success of this project was the creation of a project advisory committee. This dedicated and hard-working group of individuals provided inspiration and encouragement throughout the project. They insured that this monograph represents the knowledge, diversity, and needs of the independent living field by forwarding relevant legal and scholarly materials, selecting exemplary programs to be highlighted, and reviewing draft manuscripts. The committee consisted of the following individuals:
 

Additionally, I wish to acknowledge the following individuals who took several hours from their crowded schedules to explain their programs, to review drafts, and to forward relevant documents.
 

In sum, centers have not abandoned their original mission to move people from institutions into the community. Instead, some centers have constructed sophisticated policy solutions and have advocated on behalf of institutionalized individuals at the state level. Other centers have used innovative methods to stretch a few staff and a shoestring budget to get the job done, often in spite of insurmountable odds.

Highlights of Center Programs

The Center for Independent Living of Southwestern Pennsylvania participates in three distinct transition programs and has assisted 62 people to move from nursing homes to independence in the community since 1986.

A brand new rural center in Illinois has successfully moved one person from a nursing home into the community.

The Center in Detroit uses a transition program that is quite structured, consisting of independent living apartments scattered throughout an apartment complex. Candidates for the program are usually people who live in a nursing home or with parents and have never had a chance to learn independent living skills because of an overprotective environment. There is a maximum six-month stay in the transitional apartment. The center also can help with the first month's rent and security deposit.

The Denver Center has established support groups for young people who have tried living independently, but have been severely abused by attendants or caretakers and have retreated back to the nursing home. Support groups also serve people in nursing homes who have never lived independently.

One center helped a man who had spent 26 years in a nursing home move into his own apartment. He had been put in a nursing home when he was 33 by his father. He is a wheelchair user and has no other disability. When he first came into contact with the center, he didn't want anything to do with independent living, and only one and one-half years later would he speak to a center staff member. He asked if someone at the center could teach him how to use a computer without nagging him about independent living. Staff said yes, but insisted that he come to the center for training. That was the first time he had been on an access van by himself in his life!

That day, he changed his mind and started working on moving out of the home. The biggest problem with the move was that the consumer did not have his own wheelchair and could not take the one from the nursing home with him. Staff scrounged up a used wheelchair, threw it in the back of a station wagon, and drove it to his new home. This man has been out on his own for several months, has interviewed for a job, and has become involved in his community.

Policy Barriers

Center staff surveyed by ILRU in 1993 overwhelmingly identified two major barriers to community living for institutionalized individuals: lack of affordable, accessible housing and inadequate PAS. These areas will be examined in the following pages and recommendations to policy makers will be provided.

Housing⁽²⁾

Accessible, affordable housing is a significant factor in the life satisfaction of persons with disabilities. One of the first requirements of moving people with disabilities from institutional to independent living settings is to have an affordable, accessible place to live in the community. According to 67% of centers surveyed, finding such housing is the primary problem faced by consumers who wish to leave nursing homes.

A plethora of federal and state programs have been established to provide housing and related services to individuals with physical and mental disabilities. However, according to the U.S. Department of Housing and Urban Development report to Congress, Worst Case Needs for Housing Assistance in the United States in 1990 and 1991, individuals with disabilities suffer acute housing problems and "face the most pressing unmet housing needs" of any group which qualifies for housing subsidies. According to the report, "worst case renters"--individuals who are very low-income renters with "priority housing problems," including those who are involuntarily displaced--pay more than half of their income for rent or live in severely substandard housing. About 47% of individuals with disabilities who receive subsidies from the Department of Housing and Urban Development (HUD) fall into the "worst case" category, a much higher percentage than other low-income housing recipients, even though people with disabilities generally have preference for admission into federal rental assistance programs.

The report contrasts housing problems for individuals with disabilities and other "worst case renters." Most families with worst case needs live in urban areas and report severe rent burden as their only housing problem. In contrast, individuals with disabilities face both inadequate housing options and high rent burdens, leading to increasingly unmet housing needs. The report concludes by observing that since the enactment of the Housing and Community Development Act of 1992, the supply of federally assisted housing has declined as an absolute percentage of the overall housing supply, and housing options for people with disabilities are deteriorating (Division of Policy Development, 1994).

People with disabilities, especially those in rural areas, face the following complex of housing problems.

• Most housing is inaccessible and too few accessible or adaptable housing units are available to meet the needs of people with physical disabilities. This problem is exacerbated by recent federal and state efforts to "cap" the number of people with disabilities under age 55 in subsidized housing complexes.

• Waiting lists to obtain subsidies are often long, resulting in unnecessary institutional placement until a subsidized apartment becomes available.

• Little multi-family housing exists in rural communities, so nondiscrimination provisions in the Fair Housing Amendments Act of 1988 (24 CFR Part 14--applicable only to multi-family housing) have had minimal impact on the availability of accessible or adaptable housing in rural settings.

• Since federal building access requirements do not exist for single family residences, this often translates into less effective "make-do" solutions to accessibility problems, especially in areas where resources for technical assistance on access do not exist (Donovan & Jones, 1995).

• The rent for accessible or adaptable apartments in urban areas often is not affordable for people with disabilities of moderate income, who are also ineligible for housing subsidies.

People with more significant disabilities face complex needs beyond initial location of affordable, accessible housing. As recently as six years ago, group homes were widely considered to be the best means for providing supports needed by people with DD, MR, or CMI. While group homes allow more community integration than institutions, residents of some group homes still have little control over their lives and often remain isolated from the larger community (Rothman & Rothman, 1984).

The group home system is based upon a continuum of services with people grouped by severity of disability and extent of service needs. As people progress or their service needs change, they are supposed to be able to work their way into a less restrictive setting. There are several problems with this approach, however. First, individuals have little control over the services they receive or even where they live. Second, people with significant disabilities, such as "problem behaviors," never move to less restrictive settings, but remain in highly controlled environments. Third, services are linked to housing facilities, not individuals, so residents must continually change places of residence to obtain the levels and types of services they need (Walker, 1994).

In response to these concerns, the efficacy of group home programs is being examined by advocates and service providers. Some states are developing a new housing/support services approach that helps people establish homes in the community and provides the individualized assistance and support needed to live in those homes. This approach separates the housing from the support services, providing the individual with maximum flexibility and control. Disability agencies do not operate housing themselves, but help their consumers rent or purchase homes with the same resources used by other community members. Agencies coordinate these resources and provide the services and supports people need to live in their own homes. Support services usually are funded under state Medicaid waiver programs, but waiver funds generally are not sufficient to cover the costs of all services, especially for people with the most severe disabilities. Agencies that sponsor independent living programs must be innovative in tapping a variety of housing programs within the broader community, combining them with Medicaid waivers and other funds (Walker, 1994).

Current public housing policy also is being examined, based upon criticism that it contains duplicative programs and funding streams, archaic, burdensome, and inefficient regulations, and disincentives for recipients to find employment. Based on these charges, HUD policies and programs are under review by the Clinton Administration and the Congress. Proposals during the 104th Congress call for sweeping changes including block granting and greater state and local control of funding. If these proposals prevail, 60 major HUD operational programs, including Section 8 certificates for persons with disabilities, the housing for the elderly and persons with disabilities program, and supportive housing and shelter care plus, will be consolidated into seven programs. These programs will be consolidated further into three performance-based block grants after 1998. Proposals also call for widespread use of vouchers to allow public housing residents to choose where they will live. Tenant-based rental assistance would be governed by a pricing system that pegs the dollar amount of the voucher to local housing costs. HUD has proposed national standards under the new performance-based funding scheme that would make provisions for individuals with disabilities a contingency for funding.

Housing advocates, such as the National Action Coalition for Disability Rights and Housing, have pointed out several concerns and have proposed plans for reform. First, consolidating disability-related program funds into a general fund, combined with proposed reductions in program expenditures, is likely to result in loss of housing for people with disabilities. Second, although program reform provides an opportunity to accelerate the separation between housing and disability services, decreasing funds may also lessen the amount of services available. Third, current proposals allow local housing authorities to "target" funds to provide segregated housing programs for certain constituencies such as people with Acquired Immune Deficiency Syndrome (AIDS) or mental retardation, to save housing funds. This segregation allows local authorities to place ceilings on the amount of funds available for certain constituencies and can limit access to integrated, generic housing units.

Policy Recommendations

• Ensure that a percentage of HUD resources is made available specifically to meet the housing needs of individuals with disabilities. People with disabilities should not be lumped in with a larger class of "vulnerable populations."

• Retain the current federal requirement that individuals who are homeless must be the top priority for housing assistance. The definition of "homeless" should include people in institutions such as state psychiatric hospitals, nursing homes, ICF-MRs, transitional programs, or residential treatment facilities. A person should also be considered a top priority for housing assistance if he or she cannot return to the original dwelling due to its lack of physical access.

• Direct increased housing funds to residents with disabilities through portable vouchers to ensure consumer control and independent living. Project-based assistance funds should be converted into vouchers.

• Prohibit set-asides for subgroups of people with disabilities and targeting of funds based upon age, type of disability, or service needs.

• Separate the services a person needs and freely chooses to receive from the housing made available so that services will follow the person wherever he or she chooses to live. Services should be community-based rather than facility- or site-based.

• Provide funding and tax incentives to housing providers, renters, and homeowners for structural modifications for physical access.

Personal Assistance

Personal Assistance Services (PAS), an essential component to independent living, is broadly defined as assistance from another person with activities of daily living to compensate for a functional limitation. Advocates for disability rights and independent living are the strongest proponents of PAS, emphasizing its role in allowing independence and employment (Nosek, 1990).

Despite the cost and human factors championing community over institutional living, the United States has no comprehensive and coherent national policy to provide affordable, self-directed, community-based personal assistance for individuals with disabilities (Litvak, 1992). One result of this lack of federal policy direction is that 52% of centers surveyed report lack of personal assistance as a major barrier to transition for consumers from institutions to independence.

Federally legislated and financed in-home services are fragmented, highly regulated, and often difficult to access. The financing of in-home assistance is scattered across several federal programs, including:

• home health, homemaker, and chore services financed under Titles XIX (Medicaid) and XX (Social Services Block Grants) of the Social Security Act;

• services provided under Title XVIII (Medicare) of the Social Security Act, when home-based assistance is associated with a recent hospital stay;

• services provided under Title III of the Older Americans Act; and

• the Veterans Administration's Home Care program and its Aides and Attendant Allowance program, which apply only to eligible disabled veterans (DeJong, Brannen, & Batavia, 1993).

A major problem with establishment of in-home services is the institutional bias in the Medicare and Medicaid programs. Medicare, which provides medical coverage to Social Security recipients over age 65 and people with disabilities on Social Security Disability Insurance (SSDI), is extremely problematic for advocates of community integration. Medicare covers few services, such as PAS, which fall at the chronic end of the care continuum. This system covers primarily acute episodes in a hospital setting, or a hospital substitute such as a skilled nursing facility, where there is a curative goal. Medicare pays for in-home skilled services, with only limited payment for nonskilled assistance, and only if skilled services are being provided simultaneously. Coverage for services provided outside a hospital setting is short-term in nature, generally for restorative or episodic care (DeJong, Batavia, & McKnew, 1992).

Medicaid also contains a strong institutional bias. Federal law mandates that states wishing to participate in the Medicaid program cover the following services:

• inpatient hospital services;

• outpatient hospital services;

• lab and x-ray services;

• services in a skilled nursing facility;

• early and periodic screening, diagnosis, treatment; and

• family planning, physician, and home health services.

All other services, including PAS, are optional under the Medicaid program, and the states provide them at their own discretion. If states choose to provide services under this "Medicaid Optional" program, the 50% state match required often necessitates additional legislative appropriations. This leads to an extraordinary bias in favor of institutional care over community services in the Medicaid program. One need only look at the distribution of Medicaid funds--$2.4 billion for community-based PAS versus $20 billion for nursing homes--to appreciate the strength of this institutional bias (Nosek and Howland, 1993).

The Medicaid HCBS waiver program has emerged as the single most important resource to states in offering flexible, consumer-directed PAS and other services to individuals with disabilities. However, the fiscal problems of the states, combined with current federal proposals to curtail Medicaid expenditures and the current institutional bias in the Medicaid program, pose significant barriers to expansion of HCB waiver services. Although all 50 states now offer some level of waiver services, the bulk of funding still supports institutional-based programs such as ICF/MRs and nursing homes. This problem is further exacerbated by the original federal formula for determining the number of individuals that can be served under a state waiver program. This formula was based upon the number of empty institutional beds or "slots" within each state. HCFA has relaxed this formula to some extent, but most states still are requesting waiver funds based upon this rule. This means that people with disabilities living in states that have an excess number of institutional beds have more access to PAS and in-home services than people in states with fewer empty beds. Institutionalization is quickly becoming an outdated and outmoded form of treatment for young and elderly people with disabilities alike and should not be the basis for determining a state's level of funding for community services (Smith & Gettings, 1992).

While the Medicaid program, through its waiver provisions, has been liberalized over the past several years to allow more flexibility to states, the over-arching paradigm under which federally sponsored in-home services operate is the medical model. In this agency-directed or medical PAS model, service providers are hired, trained, and supervised by agencies (usually certified home care providers) under contract to the state Medicaid or Developmental Disabilities agency. Home health agencies were established to meet episodic health care needs during post-hospital convalescence, but have expanded to cover chronic needs of older and some younger disabled persons.

Based on a medical or rehabilitative model, this approach views service recipients as patients whose care requires nurse supervision under physician treatment plans. System accountability flows to physicians, with payment to home health agencies which, in turn pay nurses and nurse's aides under their supervision (DeJong, et. al., 1992). Programs financed by the federal government are expensive and rely on professionals employed by home care organizations such as home health agencies or nursing homes (Litvak, Zukas, & Heumann, 1987). The medical supervision and professional control required renders these programs largely unresponsive to working-age adults with disabilities who must alter their expectations and schedules to match those of the home health agency. Consequently, people with disabilities without financial resources to purchase such care or without family members to provide the support needed are left with no community options.

Independent Living Model

The type of independent living program advocated by the disability rights movement is based upon a nonmedical empowerment model and differs from medical model programs in several significant ways. First, the independent living model puts the consumer, rather than a medical professional, in charge of his or her own care. The involvement of a medical practitioner is minimized, and the daily personal assistance generally is provided by a "lay" person. This person is not affiliated with a certified home health agency, but is an independent provider, often someone already known to the consumer. Second, the consumer, rather than a home health or professional agency, generally hires, fires, and often pays the assistant. The consumer sets hours and terms of employment. Third, the consumer, rather than a professional agency, trains the assistant to provide the help he or she needs. Several states, such as Massachusetts, Kansas, and Pennsylvania, have adopted consumer-directed PAS programs, either committing state resources or using Medicaid waiver provisions. However, adoption of such programs is dependent upon the strength of the disability advocacy community seeking to advance the cause of independent living in each state (DeJong, et al., 1992).

The consumer control model recently has been adapted to serve people with limited cognitive ability by allowing a surrogate, such as a friend or family member, to perform management functions, like hiring, training, and ongoing supervision of the assistant. An essential element of this model is the ability of the consumer to choose a surrogate. Consumer and surrogate together decide which tasks each will perform. Surrogate models exist in only a few states; most HCBS waiver programs use a case management rather than a consumer/surrogate-directed model to provide PAS (Smith & Gettings, 1992).

A plethora of other issues must be confronted in the establishment and implementation of PAS programs. Many of these issues, described below, have proved to be problematic in many states.

State nurse practice legislation prohibits unlicenced persons from performing medical functions including tracheal suctioning, bowel and bladder care, and other personal hygiene tasks. Persons with the most significant disabilities can be served safely and more cost-effectively at home without the involvement of nurses in the provision of routine daily care (Bach, et al., 1992) . Yet many states are reluctant to establish PAS programs that are relatively free from the involvement of medical personnel.

Tax and benefits liability issues are also problematic. Current PAS programs either require the consumer to act as the employer of an individual provider or to accept services provided by an agency. Few options currently exist which match consumer desires and capabilities with the appropriate level of responsibility over their own care. Consumers should have the option to use the state or another agency as a fiscal intermediary which takes responsibility for withholding taxes and paying Social Security benefits (Sabatino, 1995). Consumers must be educated to advocate more effectively for a range of choices.

Lack of benefits is another major issue with consumer-controlled PAS. Most states that establish these programs provide no funds for employee benefits such as sick or vacation pay, establish no mechanism for employee raises, and make no provisions for liability insurance. Lack of competitive benefits packages has a dramatic effect on the recruiting, reliability, and longevity of the attendant labor pool.

Funding constraints at all levels of government, manifest through access and service limitations, restrict the effectiveness of PAS. Access often is limited to consumers with low incomes, and benefits are denied to consumers with working spouses, family members, or who become employed themselves. Some programs are limited to individuals who would require institutionalization without the provision of PAS. Other programs limit hours or expenditures per person, require that PAS services be provided in the home rather than on the job or in the community, or restrict the type of services an attendant can provide (Kennedy, 1993).

Another serious limitation is that most PAS programs are limited to those with physical, rather than cognitive or mental disabilities, or require that the consumer manage the personal assistant directly. This excludes people who lack the desire or capability to manage the service themselves. A few states are experimenting with surrogate programs that substitute control of a friend or family member for the consumer. However, these programs tend to exclude consumers with little family involvement or support--those most in danger of institutionalization.

Consumer education can assist PAS users and their surrogates in confronting this range of complex issues. Providing information about how these issues have been addressed in other states can allow consumers to serve as catalysts for change in their own localities.

Policy Recommendations

• Federal funding should be provided for consumer-directed personal assistance programs for working and living independently, either by:

  1. adopting federal legislation that diverts funds from institutions to community-based PAS (see recommendations offered by American Disabled for Attendant Programs Today, 1995), or

2. mandating that states provide in-home personal assistance and other community services in order to receive Medicaid funds and requiring that PAS be addressed in a state's Medicaid plan.

•  States should modify their nurse practices legislation to allow non-medical personnel to provide quasi-medical PAS services, such as tracheotomy suctioning.

• States should insure that their consumer-directed PAS programs are flexible enough to offer consumers a range of options for control commensurate with their desires and capabilities. For example, states should provide the option for consumers to use a fiscal intermediary for tax withholding or should allow consumers to select a surrogate to manage their care.

• States should provide funding to offer comprehensive, competitive benefits packages to personal assistants that would include sick pay, vacation pay, and worker's compensation coverage.

Service Approaches

Several variables strongly influence the extent, type, and level of transitional services offered by centers. Primary variables include state leadership in establishing formal mechanisms to decrease institutionalization, presence of a consumer-directed PAS program, characteristics of the service area and population (urban, rural, racial, and ethnic mix of residents), and the primary disability groups served by the center. Each of these variables is discussed below.

Formal Mechanisms

All states now offer some type of HCBS waiver to provide community services. However, states vary widely on services provided, populations served, geographic areas of coverage, and available financial resources. States have taken a variety of implementation approaches, but all must prove that individuals served under HCBS waiver programs are residing in an institution or are in imminent danger of entering an institution.

If centers become involved with implementation of state waiver programs, the services that they provide would be highly formalized and regulated. A state agency, such as Medicaid or DVR, would provide close, ongoing oversight and contract supervision and would require extensive documentation of consumer services and program finances. Sophisticated record keeping systems and close contact with the sponsoring agency would be required.

Centers participating in waiver programs are likely to obtain ready referrals from the sponsoring agency or even from institutions. Waiver funds can be used to cover skills training services for waiver-eligible individuals, allowing centers to use Title VII funds for non-waiver consumers and for other independent living services or advocacy. However, in addition to rigorous paperwork requirements, centers must also be prepared to meet Medicaid requirements that run counter to independent living philosophy, such as involvement of a nurse or case manager. Although some centers are able to successfully negotiate their dual roles of service provider and advocate, other centers experience conflicts between their role as service gatekeepers (determining who receives PAS and how much) and their role as agents of systems change. Consumers may become confused as to who will advocate on their behalf if an advocacy issue arises concerning their PAS.

Consumer-Directed PAS Programs

Not all states that provide community-based personal assistance do so through a medicaid waiver. Several states, including Colorado, Virginia, Kansas, Pennsylvania, and Massachusetts, offer consumer-directed services with a state appropriation. Because independent living centers and consumers with disabilities in these states advocated for PAS through their state legislatures, people with disabilities were instrumental in determining the conditions of service. For example, the PAS program in Virginia requires no involvement of a medical professional in determining hours of PAS or duties of an assistant. Medicaid waiver requirements do not govern service provision, so centers are more free to negotiate involvement with the program.

The major disadvantage to this approach, of course, is that state appropriations can be level-funded or easily cut in times of budget shortfall, resulting in long waiting lists, low wages, or restrictions on the number of service hours. If the center's involvement is not mandated, the relationship between the center and the nursing home may be less formal and perhaps less cooperative.

Characteristics of the Service Area and Population

Rural independent living centers face constant and often overwhelming challenges that necessitate particular resourcefulness in identifying existing or potential resources to serve consumers. Major challenges include scarcity of services, lack of accessible housing and transportation, higher per-consumer cost of service, broader staff responsibilities, and increased requirements for staff travel. Rural centers have become expert at developing mutual supports with other agencies, in combining resources, keeping abreast of information resources, and implementing new ideas and service models (Donovan & Jones, 1995).

These factors tend to make service provision less formalized and to allow for more flexible service approaches. The service requirements of formalized waiver programs can become challenging to implement in rural areas. Even more than in urban areas, relationships between service providers form the bedrock of service delivery systems. The importance of maintaining these relationships in obtaining referrals cannot be overstated. Positive relationships with community leaders, combined with other innovative approaches, are essential in locating personal assistants and others who provide individualized services.

Cultural diversity within the service area is also a major determinant of service models. The principles of consumer choice and empowerment, cross-disability services, and the importance of peer role models should be the cornerstones of any multi-cultural programs. To implement this philosophy adequately, individuals from cultures being served should be involved at all levels of the organization, including the board of directors and center management.

Disability Population

Centers wishing to provide transitional services to a cross-disability population must be particularly innovative in developing new service models. For example, traditional consumer-directed personal assistance programs must be modified to serve people with cognitive impairments. Surrogates or advocates can fill this role, but care must be taken to insure that the consumer makes life choices at the highest level possible.

Centers with Innovative Approaches

The programs described in the following pages show how centers have grappled with the above issues, implementing creative and unique service approaches tailored to their particular communities. Representing only snapshots of transitional services, these exemplary programs provide glimpses of service implementation possibilities given the array of variables.

ENDependence Center of Hampton Roads, Norfolk, Virginia
Liberty Resources, Inc., Philadelphia, Pennsylvania
Wyoming Independent Living Rehabilitation, Inc., Casper, Wyoming
Topeka Independent Living Resource Center, Topeka, Kansas
Independent Living Center of Amsterdam, Amsterdam, New York
Independent Living Resource Center, San Francisco, California

1. Some residents have more than one disability and are counted twice, making percentages add to over 100.

2. The author would like to thank the National Council on Disability and the National Action Coalition for Disability Rights and Housing for providing much of the information used in this section.