"Government policies and funding should not perpetuate the forced segregation, isolation, or institutionalization of people with disabilities of any age," said delegates to a 1999 conference on "Personal Assistance Services in the New Millennium," hosted by the World Institute on Disability in July, 1999. "No one should have to live in a nursing home," said Clinton adminisration Secretary of Health and Human Services Donna Shalala.

In the past, disability was regarded as a medical condition that prevented people from participating in most activities of daily life. Many people with disabilities were segregated and isolated from society, housed in large institutions without consideration of appropriate, less restrictive, alternatives.

In 1965, Medicare and Medicaid legislation was passed that provided strong financial incentives to provide long term care in nursing homes. "Medicare and Medicaid legislation came to guarantee public payment for institutional services. Nursing home care in the United States is an entitlement -- any person who is eligible for nursing home services cannot be denied that service if there is a nursing home bed available," says the Robert Wood Johnson Blue Ribbon Panel on Personal Assistance Services." "Personal assistance services delivered in the community does not have such entitlement status. There is still a strong institutional bias in federal and state policies which provide funding for long-term services."

More from the Blue Ribbon Panel:
The financial eligibility criteria for receiving personal care services in the community should not be more stringent than the financial eligibility criteria for institutional placement. Medicaid and SSI asset and income limits for persons receiving long-term services in the community should be changed to allow individuals the greatest opportunity to remain in the community and not be forced into an institution. For example, recipients of home- and community-based services could be allowed to retain the equivalent of 6 to 12 months of expenses, and the maximum income requirements for qualified disabled working individuals could be relaxed. This must apply equally to all persons who meet institutional criteria, regardless of the program type (e.g., Personal Care Option, home- and community-based waiver services, etc.).

In many states, Nurse Practice Acts require that many procedures associated with personal assistance be performed or overseen by a registered nurse -- even things such as giving medications to someone who cannot use her hands and must have pills placed in her mouth. The independent living movement has been working to get such Acts changed to permit "nurse delegation,." which both brings down the cost of personal assistance services and allows consumer direction.

"It is not unusual for nurses to delegate a wide range of tasks to attendants and family members in the performance of their practice," says the Blue Ribbon Panel. "And all states permit nurses to use wide discretion in teaching and delegating. Requirements for specific nurse oversight or firm requirements that the persons to whom tasks are being delegated have particular credentials, or that they be closely supervised at regular intervals drives up costs of care and reduces flexibility.

Several states have clarified their nurse practice acts to permit delegation to uncertified, qualified individuals with no untoward effects. Requiring long-term care providers to have professional certification in order to provide 'low-tech' services increases the cost of long-term care programs substantially with no discernible impact on the quality of services delivered.

Training requirements should be flexible in order to accommodate the range of needs and resources of service recipients. Training packages required at the state level are unlikely to meet the needs of any long-term care consumer from the diverse population of individuals who need those services, and are likely only to increase program costs. The consumer of long-term care services is the expert when it comes to determining her/his needs, and should be allowed to direct and provide the individualized training of her/his assistant(s).

If a minimal level of training is required for personal care providers at the state level, these programs should be administered by the consumer if desired, and should include information on consumer-directed approaches and descriptions of how to maximize the independence of individual consumers.

The Blue Ribbon Panel recommends that:

• Uncertified but competent individuals be allowed to perform certain personal assistance tasks.
• The personal assistant for a particular individual be required to have only the type of training necessary to meet the needs and preferences of the individual.