Personal Assistance Services.

This issue of American Rehabilitation is the first of two devoted to the discussion of personal assistance services.

The need for personal assistance services is among the most actively debated issues in the rehabilitation and independent living arena. There is a wide variety of current research projects focusing on this concern, primarily research studies sponsored by the National Institute on Disability and Rehabilitation Research here in the Office of Special Education and Rehabilitative Services and by the Assistant Secretary for Planning and Evaluation in the Office of Disability, Aging, and Long-Term Care Policy at the Department of Health and Human Services.

Nursing and nursing aide services have been provided to individuals with significant physical disabilities since the beginning of organized society. In recent years, these services have been provided with increasing sophistication. The classic "Medical Model" paradigm applicable to the provision of nursing services presupposes that the individual with the physical disability is sick or that something is wrong with him/her and has needs for which to be cared. Caring services such as these have traditionally been provided in nursing homes and other institutions in order to permit a limited number of full-time staff to take care of a larger number of patients. The use of Visiting Nurses represented an expansion of these services enabling nurses and aides (under the direction of nurses) to be placed in the homes of people needing services.

The early challenges to the Medical Model paradigm began in 1959 with the advent of California's In-Home Support Services (IHSS) program, which not only placed providers in the homes of individuals receiving services but, most importantly, also required that providers follow the directions of the individual receiving services. The independence and confidence gained by individuals with significant disabilities receiving services through this consumer-directed approach was instrumental in developing the independent living movement in California. Since then, consumer-directed personal assistance programs have developed in many states, each providing varying levels and types of services and serving varying disability populations.

The IHSS program in California has grown to provide services for 200,000 people with significant disabilities. A recent study of the IHSS program by A.E. Benjamin, Ph.D., et al., at the University of California at Los Angeles compared a professional agency model with a consumer-directed model and revealed that the consumer-directed model had a unit cost of approximately one-third of the agency model and that there was no difference in safety or unmet needs. According to the study, the consumer-directed model program provided the individual greater satisfaction with service quality, impact, and empowerment and better emotional, social, and physical well-being. The study results were consistent with a second study conducted in Virginia by Beatty et al.

The argument for home-based community personal assistance services was eloquently made by U.S. Attorney General Janet Reno on May 15 this year at the National Conference on Independent Living when she said:

"We believe that states have an obligation to provide services to people with disabilities in the most integrated setting appropriate to their needs; and we have used the law to fight for this. Many individuals with disabilities are being placed in nursing homes or other institutional settings even when they don't really need to be there.

"If the treating professionals conclude that the individual could live in the community with the right mix of support services, that is where they should be.

"But some states don't understand what I've been talking about and they refuse to make reasonable modifications in their policies that would allow this to happen. They deny people with disabilities from receiving community based services under already existing state programs."

A recent federal appeals court case, Helen L. vs. DiDario, established a legal framework for supporting community-based alternatives to the mandatory Medicaid provision of nursing home coverage. In this case, a number of nursing home residents brought suit against the Secretary of the Pennsylvania Department of Public Welfare (DPW), alleging that the department violated the Americans with Disabilities Act (ADA) by requiring that they receive required care services in a nursing home rather than in more integrated settings such as an individual's home. The United States District Court for the Eastern District of Pennsylvania granted summary judgment in favor of DPW. Following an appeal by one of the plaintiffs, however, the U.S. Court of Appeals for the Third Circuit held that the department violated ADA by requiring that the individual receive the required care services in the nursing home rather than through the attendant care program, for which she was qualified, in her own home.

Many of us are facing questions about how best to meet the long-term disability needs of aging parents. Many of the rest of us know healthy, capable individuals with significant physical, sensory, cognitive, or mental disabilities who need some form of personal assistance services on a daily or weekly basis in order to live independently. I believe that individuals with significant disabilities need personal assistance services not only to survive, but also to achieve their life potential.