Home health agencies want in on self-directed care

Home health agencies in Washington state that opposed legislation allowing the physically disabled to self-direct their own health care are now signaling an interest in amending the law to include their staffs as covered providers.

As the law is now written, only independent contractors may provide services under the direction of a disabled person, and the services may be provided only in the disabled person’s home.

The Washington Aging and Adult Services Administration says that those who are disabled, live at home, are age 18 or older, and want to direct their own care must:

• tell the health care professional who has ordered the treatment that they want to direct an individual provider to perform the tasks;

• have the necessary knowledge and ability to train someone to perform the tasks;

• train the personal aide or individual provider to perform the tasks;

• supervise the performance of the personal aide or individual provider.

Ignoring patients

The bill, which passed last summer, arose out of changes to the state’s nurse practice act. Hearings on nurse delegation legislation that was approved in 1995 raised awareness among members of the state’s disabled community that they were left out of the equation.

Toby Olson, executive director of the Governor’s Committee on Disability Issues and Employment, says disabled people listened to discussions about conditions under which a nurse could delegate authority to perform personal tasks to personal assistant providers and realized that the debate was ignoring the patients for whom the tasks were performed.

Public forums on self-directed care followed the nurse delegation debate, aided by a health department study of self-directed care initiatives in other states. Mr. Olson said the graduate nursing student who did the study for the department had been skeptical of the concept but ended up a believer based on what she found in other states, a conversion that helped convince people to support the concept.

Patty McDonald, program manager with the Aging and Adult Services Administration, tells State Health Watch that case managers continue to be concerned about liability, especially since the legislation does not include a specific list of tasks that can be self-directed.

"Who may be held liable if a bad outcome occurs depends on a variety of issues. For example, if the physician prescribes an inappropriate treatment, the physician is liable," she points out. "If the disabled person gives the care provider the wrong instructions, the disabled person is liable. If the care attendant performs the task incorrectly or refuses to follow directions, then the care attendant is liable."

Ms. McDonald sympathizes with the challenge facing case managers. "Case management is one of the most difficult jobs a person can undertake. The case manager is responsible for supporting the client and that includes support in implementing the plan of care. If self-directed care tasks are not performed as outlined in the plan of care, the case manager may offer assistance and training, or help the client obtain an alternative. People with a disability do not have to self-direct. They also do not have to self-direct all of their needed care. For example, they could choose to self-direct their medications, but not their wound care. This is part of the service plan development process that the case manager and the client must work out."

Mr. Olson says participation in the law remains low as the program gets started. "It’s still very early in implementation, and it’s hard to say anything about it yet," he tells State Health Watch. "We haven’t seen any particular problems."

The Washington law appears to have been one of the most liberal at the time it was adopted. According to Mr. Olson, many states still do not support self-directed care even for activities of daily living, such as dressing, that are not covered by professional licensure.

Ms. McDonald says a study of the self-directed care law is due to the state legislature in 2001. Researchers from the University of Washington School of Nursing in Seattle are looking into the impact of the bill in terms of consumer satisfaction with self-directed care including these points:

• perceptions of degree of autonomy, self-direction, and choice allowed by the bill;

• service quality and consumer safety as determined both by consumers and by quantifiable outcomes;

• number of reports that personal aides abused or neglected a consumer;

• number of cases of consumer neglect or abuse that directly caused medical or social emergencies;

• whether consumers were coerced into accepting self-directed care or caregivers were coerced into performing tasks that they were not trained to do.

[Contact Ms. McDonald at (800) 422-3263 and Mr. Olson at (360) 438-3168.]