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Policy and program issues in providing personal assistance services.

I. The Context of Personal Assistance and National Long Term Services Policy

Government funded personal assistance service (PAS) programs exist in every state in the U.S., but serve only a small fraction of the estimated 9.6 million people who need the assistance of another person with basic personal maintenance, hygiene and household tasks. This includes 7.8 million non-institutionalized people (78% of whom receive services only from family and friends), 1.5 million people in nursing homes and .3 million people in facilities for people with mental retardation (Bureau of the Census, 1990; Pepper Commission, 1991; Rutgers University Bureau of Economic Research & World institute on Disability, 1990; LaPlante, 1989; Kraus & Stoddard, 1989). Most receive PAS through informal supports: family, friends, and volunteers (Bureau of Economic Research & WID, 1990). People with some types of disabilities or inadequate informal supports have historically been served in nursing homes and other institutional facilities by medical professionals and paraprofessionals.

Only in the last two decades have significant numbers of state government programs been developed specifically to provide PAS in homes and communities. The development of these services has been very uneven (Litvak, Heumann, & Zukas, 1987). Some states have restructured their long-term service delivery systems to include a strong component of community-based PAS, others rely primarily on institutional placement and informal supports.

Many PAS programs retain elements of the medical model (DeJong & Wenker, 1979) which has structured this country's institutional service delivery system. PAS programs are often structured on the premise that most program recipients need to be "taken care of". This paternalism is often quite overt, particularly among programs which serve older people or people with cognitive disabilities (Kimmich, 1991). Doctors, nurses, case-managers or other professionals may be very involved, overseeing the provision of narrowly defined and often strictly rationed personal assistance services (Dejong, Batavia, & McKnew, 1992). There is little or no choice on the part of the consumer as to who will provide PAS or how it will be provided. Moreover, most PAS programs are part of "welfare" systems, and tend to limit eligibility for services to people with low incomes (Litvak & Kennedy, 1991 b).

A few newer programs have developed largely in reaction to the-paternalistic model of service provision (Litvak, 1991). These programs attempt to minimize professional intervention, income restrictions, and work disincentives. They are designed to maximize consumer involvement and control in the delivery of PAS.

States are currently faced with growing pressure to develop and expand a system of community based services. Between 1984 and 1988, average caseloads in existing PAS programs grew by over 10%, while costs grew at an even higher rate (Litvak and Kennedy, 1991b). A number of factors have contributed to this increasing demand.

Institutions have become an expensive way of providing long term services. According to the Pepper Commission 1990), Medicaid nursing home expenditures now top $43.5 billion - over 80% of total long term care expenditures. The spiraling costs of health care have impacted the nursing home industry, increasing staffing and administrative costs. Institutions also face growing resistance from disability advocates who view institutional placement as a form of costly and dehumanizing incarceration, and describe community based PAS as a basic human and civil right (Degener, 1992; Ratzka, 1992). At least on an individual basis, home and community based personal assistance services offer a cost-effective alternative to institutions (Kotler, Wright, Jaskulski and Kreisberg, 1985).

As medical technologies improve and the so-called "baby-boom" generation ages, growing numbers of people with disabilities are seeking long term services (U.S. General Accounting Office, 1991 a). At the same time, informal service provision by family members, the dominant source of PAS in this country, is becoming less viable, due to shifting family structures and increasing numbers of women entering the workforce (Etheredge, 1987). An affordable system of government funded PAS which augments existing support systems and creates a workforce of non-medical attendants to provide PAS is therefore becoming an economic necessity Ball, 1989).

II. Current State Systems

It is perhaps an exaggeration to refer to the current patchwork of programs and services for people with disabilities in each state as "systems". States may utilize a variety of federal funding sources to provide PAS (Litvak & Kennedy, 1992). Current state and federal funding sources include:

* Medicaid (Title XIX) Personal Care Option and Waiver funds

* Social Services Block Grants (Title XX)

* Older Americans Act (Title III)

* State income supplements to SSI, as well as solely state

funded programs

* Medicare (Title XVII) for short-term PAS only

* Vocational Rehabilitation (for VR clients only)

* Veterans Administration Aid and Attendants Allowance

The funding source appears to impact the actual design of PAS programs less than the political and historical circumstances unique to each state. The political strength of different interest groups has often determined who receives PAS and how it is provided (Litvak & Kennedy, 199 1 b). The perceived needs of the target populations often influence the structure of the programs in terms of service mix, hours available, degree of oversight, etc. As states attempt to serve diverse and growing populations needing PAS, they may opt to expand existing programs or develop new ones.

A nationwide survey conducted in 1989 by the World Institute on Disability studied 132 state and federally funded government programs which provide PAS to groups of different ages, incomes, and disabilities (Litvak & Kennedy, 1991 a). These programs vary dramatically in terms of policy and regulation, but people with disabilities in each state who need PAS and wish to access these programs face a core of similar problems. In order to understand these problems, one must examine the design of service delivery systems. The following sections will outline major policy issues identified by disability advocates and program administrators and describe how some specific programs have addressed these issues.

A. Access Restrictions

PAS programs limit access and define target groups primarily through various eligibility criteria. Eligibility criteria may be narrowly defined in order to contain program costs or restrict growth (Justice et al., 1988). These criteria are not static. In response to budgetary constraints, several states have modified existing program eligibility requirements to reduce costs.

Most government programs limit eligibility to people with low incomes and resources. In 1988, over 20% of programs limited eligibility to people with incomes below the poverty level of $5,257 per year (Litvak & Kennedy, 199 1 a). Under SSI rules, which are directly related to PAS program eligibility in many states, spousal income is included when determining eligibility for SSI. "Spousal deeming", i.e. "attributing income and resources from an ineligible member (spouse) of a couple (either married or holding out as married) to the eligible member of the couple", as well as possible reductions in benefits when both members of the couple are eligible for services, often discourage recipients from marrying or forming long term relationships (Martin, 1991). Parental income criteria are often used to limit eligibility in programs which serve children.

Income and resource restrictions are de facto work disincentives for many program recipients. Consumers simply cannot afford to become employed; they would lose benefits and be forced to purchase PAS privately (Nosek, 1990). Only a few states offer programs (usually administered through state vocational rehabilitation agencies) which explicitly serve people who are employed. These innovative programs tend to have extremely small and static caseloads (Litvak & Kennedy, 1992).

The implementation of section 1619 of the Social Security Act allows SSI recipients who start working to maintain publicly funded benefits (including PAS) at no cost to consumers until their earnings exceed the value of these benefits (Roth, 1990). This legislation theoretically addresses the work disincentive issue for SSI recipients, but at this point awareness (and subsequently, utilization) of the 1619 provisions by the Social Security Administration is apparently quite limited (Martin, 1991).

Some states attempt to mitigate income restrictions through various spend down formulas, which allow people to deduct medical and/or disability related expenses from their incomes. Other programs allow people to purchase services on a sliding fee scale. These programs usually target working age adults. Advocates argue that costs of such government services are at least partially offset by the increased tax revenue generated by working people with disabilities. The efficacy of such mechanisms to reduce impoverishment or remove work disincentives depends largely on the degree to which these mechanisms allow consumers to receive an adequate level of service while retaining a reasonable portion of their income and assets. The Massachusetts Commonwealth Extra Program has virtually eliminated work disincentives by allowing people with disabilities at all income levels to buy into part or all of the state's Medicaid services (including PAS) at a relatively modest cost, but the program is in danger of being curtailed to save state revenues (J. Kimberly, private communication, October 1, 1991). Some analysts point out that the cost of providing these services is offset (at least in part) by additional tax revenues generated by the employed consumers (e.g., Martin, 1991).

Some programs target specific age groups. The programs funded by the Older Americans Act, for example, are required by federal mandate to serve only those over 60 years old. Disability advocates have charged that targeted services for older people can often reflect latent "ageism": an assumption that because consumers are old and disabled, they don't require or desire independence (Cohen, 1992; Kailes, 1992; Kimmich, 1991).

All programs require some sort of documented need for services, usually based on assessments of functional limitations in activities of daily living (ADLs) or ADLs and instrumental activities of daily living (IADLs). These measures theoretically target resources to the people who most need services, but functional limitation criteria are often set so high that many people with a genuine need for PAS are considered ineligible. Some programs with fixed budgets have raised the degree of functional need required for program eligibility, excluding people who had been receiving services in order to include new and more severely disabled applicants (Kennedy & Litvak, 199 1 a).

Some programs limit eligibility to people who have severe functional limitations and are "at risk of institutionalization". The Medicaid Waivers, a special class of federally funded PAS programs, explicitly link program expenditures to nursing home expenditures, requiring states to demonstrate a decline in nursing home placements due to the provision of PAS (the so-called "cold bed" clause) (Litvak & Kennedy, 1992).

PAS programs have largely been designed to serve people with physical disabilities, and very few programs define functional limitation broadly enough to allow service delivery for people with exclusively cognitive or psychiatric disabilities. The type of services offered by most programs also preclude effective service delivery to these populations. Expanding PAS to serve such groups, however, can be beneficial and cost-effective (Stewart, 1992). A Medicaid program in Maryland, for example, has dramatically reduced hospitalization rates for people with psychiatric disabilities by providing ongoing support services with PAS funds (Eisenburg, 1990).

Some program eligibility requirements reflect a concern that the state may end up paying for services which are already being provided informally by family members. Very few programs reimburse family members who serve as attendants (Litvak & Kennedy, 1991 b; Lewis-Idema et al., 1990), but some go so far as to allow only people without non-disabled spouses or other family to become eligible for service.

Aside from eligibility criteria, access to PAS programs may be restricted simply because potential consumers and service professionals are not aware of the services available. In Montana, for example, implementation of outreach services has dramatically increased participation in that state's PAS programs (Kennedy & Litvak, 1991).

B. Service Limitations

While eligibility criteria can limit access to people with less severe functional limitations, a variety of service limits restrict program utilization for people with more severe functional limitations or specific service needs (Kennedy, 1992). Limits in the type and amount of services may preclude potential consumers from seeking program services, even if they are technically eligible. Such individuals, if existing PAS programs do not meet their needs, may remain in costly and restrictive institutions.

The most common reason cited for having service caps is to contain program costs (Kennedy & Litvak, 1991). Many programs define per person service limits, usually expressed in either maximum hours allowed per person or maximum expenditures per person. People with very high PAS needs cannot receive an adequate level of service in most of these programs. Several states offer small programs specifically geared to people with high PAS needs, sometimes requiring that consumers live in some kind of congregate housing in order to maximize attendant staffing (Kennedy, 1993). A few states do not set per person limits in some programs, allowing a small percentage of program recipients to receive up to 24 hours of PAS per day, but provision of this level of service is relatively rare.

Restrictions on the amount and type of services available, as well as restrictions on the location in which services are provided, often limit the independence of those people who are receiving program services. In most cases, provision of personal assistance services is limited to the home, a policy one advocate refers to as "the house arrest principle" (Ratzka, 1992). Only a few small programs allow PAS on the job. Transportation and escort, if available at all, are usually limited to medically related trips (Litvak & Kennedy, 199 1 b). People without other informal supports may become essentially confined to their homes because of such restrictions.

The World Institute on Disability (Litvak, Zukas, and Heumann, 1987) defines personal assistance services as the assistance of another person with those tasks which individuals would normally do for themselves if they did not have a disability. Government PAS programs, however, tend to restrict their definitions of reimbursable PAS services.

Most programs offer a core of basic personal and household tasks (e.g., feeding, bathing, dressing, ambulation, transfers, oral hygiene and grooming, skin maintenance, light housekeeping, laundry, meat preparation and cleanup). Other important tasks (e.g., assistance with childcare, heavy cleaning and maintenance, paramedical services, respite and emergency, non-medical escort and transportation) are often not considered appropriate personal assistance services (Litvak & Kennedy, 1991 a).

Most programs do not offer emergency services, due in large part to the logistical staffing problems involved. Programs which contract with provider agencies are often better at offering such services, because agencies can designate one or more employees as emergency attendants. Programs which utilize independent contractors may allow for emergency hiring of contract agency providers or maintain lists of available attendants. In California, the city of Berkeley has established its own emergency attendant service to serve its large disabled population.

The provision of paramedical services, particularly "invasive procedures" (e.g., assistance with medications, injections, catheters or ventilators) is particularly problematic for PAS programs. Such services are usually not readily available to the consumers who need them, due in part to legal restrictions set by state nurse practice acts (Sabatino, 1990).

Nurse practice acts usually prohibit non-licensed individuals other than family members from doing invasive procedures. State administrators often cite these laws and concern over liability for attendant negligence, as reasons for not providing paramedical services through their PAS programs, but people who need such service on a daily basis may not be able to live in the community because of such restrictions.

A few states have worked directly with state nursing boards, consumers, advocates, providers, and state officials to modify the nurse practice act or related regulations. In Oregon, for example, regulations were promulgated which allow nurses to delegate paramedical tasks to attendants after specific training for those tasks. In Texas, similar regulatory changes make it possible for some state programs to allow the consumer's physician to directly authorize provision of paramedical services by a designated attendant (Kennedy & Litvak, 1991).

A Massachusetts Medicaid program explicitly allows the consumer to train an attendant to provide paramedical services. Several programs tacitly acknowledge that program recipients may require services technically excluded by state statute, but these programs do not attempt to enforce such service restrictions. Administrators of these programs say that the actual risk of successful negligence lawsuits is relatively low, and the state has decided to assume the liability risk (Litvak et al., 1991).

C. Delivery Mode/Workforce Issues

The type of attendants used in PAS programs can be grouped into three categories, commonly referred to as delivery modes: agency providers, government providers and independent providers (IPs). Most programs use only one of these delivery modes, although each mode offers advantages and disadvantages to service recipients. Pennsylvania has a program which allows clients to choose the type of provider mode they prefer, but such consumer choice is very rare. The choice of provider mode is largely based on administrative and economic considerations rather than consumer preference. The following sections will describe each delivery mode and the major workforce issues associated with each mode.

1. Agency Providers

Agency providers are attendants who work through nonprofit or for-profit agencies, and are considered employees of these private agencies. This is the most common provider mode utilized (Litvak and Kennedy, 1991a), and one which requires relatively little direct administrative involvement on the part of state governments. By utilizing agency providers, the state delegates legal responsibility for paying providers and withholding income taxes to the agencies, and can minimize potential liability for attendant negligence (Sabatino & Litvak, 1992).

Private agencies are responsible for recruiting, screening, interviewing, hiring, training, supervising, and paying attendants. These agency functions tend to limit the independence of consumers who wish to perform such PAS management services themselves, but may be appropriate for people who are unwilling or unable to self-manage their PAS. Private agencies, because their administrative structures allow for greater coordination of personnel, are often used to provide a low number of hours to large numbers of people.

A commonly cited problem with programs which use agency providers is the tendency to require an expensive and sometimes intrusive level of involvement by medical professionals in the delivery of PAS. However, this "medicalization" of PAS occurs across provider types (Maryland's Medical Assistance Personal Care Program uses independent providers, but requires home visits by nurse case monitors every 60 days).

In most PAS programs, including those which use provider agencies, high turnover for attendants is a constant problem (Kimmich and Godfrey, 1991). Low pay, few or no benefits, long hours, strenuous work and little potential for professional development are the most commonly cited reasons for attendant turnover. Some programs, such as Maryland's In-Home Aide Services, appear to have dramatically reduced turnover by providing relatively high pay and benefits, as well as a career ladder for attendants. However,the greater cost of this system has been balanced at least in part by the program's strict caseload caps and individual service limits.

2. Government Providers

Government providers, who may work for local or state governments, are the least commonly utilized delivery mode (Litvak & Kennedy, 1991a). Some government providers are considered civil service employees, and receive the same wage scale and benefits as other government employees. This is the best paid group of attendants. Non-civil service employees are usually part time workers who are not considered regular civil service employees, and whose pay and benefits are comparable to independent providers.

3. Independent Providers (IPs)

IPs are attendants who work as independent contractors, employees of the recipient, or in a limited sense (for tax withholding purposes) employees of the state. The actual conditions of employment for IPs vary markedly among states. In a few states, programs exist which allow family members to become paid providers (usually under limited circumstances). IPs tend to receive low wages and few or no benefits. Programs which utilize IPs often offer more hours of PAS, presumably due to the lower per unit cost (Litvak & Kennedy, 1991 a).

This delivery mode is the most likely to afford some degree of consumer control; almost all the programs which allow a consumer to hire, fire and train their attendants use IPs (Litvak, Zukas and Heumann, 1987). Consumers presumably also have more say in determining what, when, and where services are provided. For consumers who wish to maximize independence and consumer control, the IP mode is therefore the most likely to allow consumers to manage their PAS.

This reliance on self-management is also perceived as a weakness of this provider mode; consumers without the ability or desire to self-manage their attendants may be placed in a situation which Kapp (1990) describes as "an almost nihilistic abandoning of a consumer to her theoretical rights". However, lack of appropriate management and support services is not a problem unique to programs which use IPs.

People can learn to self-manage their PAS. Massachusetts' Personal Care Assistance program, for example, provides extensive peer training for consumers in attendant management techniques, identifying elements of a quality service, and health condition self-monitoring. This training, along with an adequate pay scale, appear to provide a high quality of service (Kennedy & Litvak, 1991). The long-term cost effectiveness of this type of consumer training program is not documented, but is an obvious research priority.

For programs which utilize independent providers, the process of tax withholding and the provision of legally mandated benefits (i.e., Social Security, unemployment, and worker's compensation) are critical issues which can shape the design of the entire program. States which decide to use the IP mode often do so because of the relatively low per unit costs. Paying for even minimal benefits can increase the per unit cost significantly. Moreover, the payment of such benefits may create the perception that attendants are working for the state, and consequently give attendants justification to lobby for pay and benefits comparable to other state employees.

Such concerns have led Montana's Personal Care Services program to switch from IPs to agency providers primarily in order to avoid legal responsibility for benefits, and led Michigan's Home Help program to limit the hours of service an IP may provide in order to define attendants as part-time workers and circumscribe requirements for providing unemployment or worker's compensation insurance (Kennedy & Litvak, 1991). However, the largest PAS program in the country, California's In-Home Supportive Services, does withhold taxes and provide worker's compensation for independent providers (Litvak et al., 1990).

D. Service Quality Issues

Most states define quality as the low incidence of negative outcomes (i.e., abuse, neglect, illness, or injury). Advocates argue that program quality should also be judged by the degree to which programs facilitate social and economic independence.

The way in which states design quality assurance strategies reflects underlying assumptions about the needs of people with disabilities (Litvak & Kennedy, 1991 b). Some programs rely on quality assurance systems from "above", mandating administrative and professional oversight procedures (e.g., state compliance standards, paper reviews, nurse supervision, case management, attendant screening and training). Other programs emphasize quality assurance from "below", providing mechanisms for consumers to define and control their PAS with a minimum of intrusion (e.g., consumer training, peer support, appeal and grievance procedures, consumer boards, hotlines, ombudsmen).

Neither type of approach is sufficient to insure quality to all consumers. Some people who need PAS are capable of managing all aspects of their services and deciding for themselves what quality service entails. Others require ongoing support and monitoring, and some need such services initially, but with experience or training would be capable of monitoring their own PAS. Mandating professional and administrative oversight for all consumers may be costly and can impede independence, while doing little to guarantee service quality.

III. The Growing Importance of PAS Programs

There is an emerging consensus across the political spectrum that government funded PAS must be expanded. Even fiscal conservatives involved in the recent congressional Commission on Comprehensive Health Care (The Pepper Commission, 1990), while dissenting on most aspects of the commission recommendations, agreed that more resources must be directed to home and community based long term services. How to pay for such expansion, however, remains controversial.

The current recession has only aggravated what appear to be chronic pervasive shortfalls in available revenues in most states (Lacayo, 1991). The resulting budget cuts and expenditure caps have created a siege mentality among many program administrators, consumers, and advocates. Current efforts focus primarily on maintaining existing programs and/or minimizing the severity of budget cuts. In the words of one program administrator, "a major expansion of services just isn't in the cards fight now" (R. Young, personal communication, November 13, 1990).

Due in part to these ongoing fiscal crises, federal programs which offer matching funds have become increasingly important to many states. The Medicaid Personal Care Option in particular is viewed as one of the few vehicles left for leveraging federal dollars to expand PAS, and the number of these programs, as well as the expenditures within these programs, has grown dramatically in the past decade (Litvak & Kennedy, 1991). However Medicaid services, because of their entitlement status, are described by many legislative and executive policy makers as "budget busters", despite their federal matching funds (Altman & Beatrice, 1990; U.S. Government Accounting Office, 1991). A national initiative making such optional services a required Medicaid service would undoubtedly be met with opposition in some states which currently choose not to utilize the personal care option.

In spite of the current economic climate, disability groups are stepping up the campaign to develop a national system of PAS delivery. Heumann (1991) testified in a recent Senate hearing that, despite passage of landmark civil rights legislation (the Americans with Disabilities Act of 1990), without a national system of personal assistance services, many people with disabilities will not be able to fully participate in their communities. The Coalition of Citizens with Disabilities (CCD), a national coalition of advocacy groups, has developed and ratified draft legislation for a national PAS system premised on consumer choice. ADAPT (American Disabled for Attendant Programs Today) has begun a campaign of direct action which targets the U.S. Department of Health and Human Services (HHS) in order to draw public attention to the disproportionate amount of federal funds going to nursing homes rather than home and community based PAS. Members of Congress have begun to look at these issues, most systematically in recent long-term care legislation based on recommendations from the bipartisan Pepper Commission. The Long-term Care Campaign continues to organize families and older people to lobby for reform nationally. The Research and Training Center on Public Policy in Independent Living at the World Institute on Disability (WID) recently convened an international conference on PAS which produced a resolution calling for the recognition of PAS as a basic civil and human fight.

Policy research in community based services has intensified, and a growing body of knowledge is adding empirical justification to the calls for reform. The Commonwealth Fund has supported a series of important research projects to examine community-based services for older people. WID has completed a study of the Medicaid Personal Care Option, and presented its findings to the Health Care Financing Administration (HCFA). Such developments suggest that the provision of PAS will become an increasingly important policy issue in the 1990s. Further examination of each of the issues touched on in this paper, as well as comprehensive examinations of demographic characteristics of the potential PAS user population and the costs and benefits of service provision, are a necessary precedent to any major policy initiatives.


This project was partially supported under a grant (NIDRR #HI33B00006-90) from the National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services (OSERS), Washington, D.C. 20202. This information is also based on research funded by a contact from the office of the Assistant Secretary of Planning and Evaluation (ASPE) U.S. Department of Health and Human Services (HHS), contract #HHS-100-89-0025, and grants from the Charles Stuart Mott Foundation, and the National Institute of Disability and Rehabilitation (Research NIDRR), grant #G008720134. However, the contents do not necessarily represent the policy of these agencies and endorsement by the federal government should not be assumed.


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Received: June 1991 Revision: August 1992 Accepted: September 1992
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Author:Kennedy, Jae
Publication:The Journal of Rehabilitation
Date:Jul 1, 1993
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