Self-Directed Care bill passes legislature

Public policy
Gillian Maguire

In western Washington, a woman with multiple sclerosis whose hands no longer grip or lift small objects must lick her pills off the kitchen table. In eastern Washington, a man whose cerebral palsy affects his hands has resided in a nursing home for over 20 years. If he had been able to administer his own insulin shots, he could have lived in his own apartment.

Both people have the capacity to know when to take a pill or a shot and how to administer them. Unfortunately, neither person has the physical ability to readily do these tasks for themselves. So why not ask a Personal Assistant to do the task? The reason is simple and shocking: Washington state law — the Nurse Practice Act — forbids it.

Under the Nurse Practice Act, these tasks must be performed by a nurse or certified nursing assistant (CNA). Of course, most people who are living independently don’t have daily access to a nurse or CNA. Some have chosen to break the law, while others have been forced to forego independent living because they lacked the physical strength or control to perform a few simple tasks.

Now that has changed. As a result of people with disabilities sharing their frustrations with experiences like the ones above, the Legislature passed the Self-Directed Care Act, substitute House Bill 1880, on April 19, 1999. This legislative triumph was the culmination of a three-year grassroots campaign by advocacy organizations and people with disabilities. The campaign was a response to the self-identified needs of people who want to direct their paid unlicensed Personal Assistants to perform tasks that they would perform themselves if not for their functional disability. The Governor signed the Act into law on May 14, 1999.

The Act describes self-directed care as, "the process in which an adult person, who is prevented by a functional disability from performing a manual function related to health care that an individual would otherwise perform for himself or herself, chooses to direct and supervise a paid personal aide to perform those tasks."

Disability rights advocates and the Department of Social and Health Services (DSHS) alike welcome the news of the bill’s passage. Dan Murphy, of Aging and Adult Services Administration (AASA), applauds the bill, saying, "AASA supports self-directed care. It is a good tool to help people live independently."

Katrinka Gentile, an advocate of over 20 years commented, "It is ludicrous that anyone can tell me how and what I can do with my body. SHB 1880 corrects discrimination, and all I can say is it’s about time it passed."

National advocates, including Disability Rights Education and Defense Fund (DREDF), assert that nurse practice acts similar to Washington’s cause discrimination under the Americans with Disabilities Act. They explain that a person who does not have a disability can do the health-related tasks themselves and are not required to use the services of a nurse or CNA. For example, a person whose diabetes is controlled by insulin is prescribed the medication by a doctor, instructed in the correct dosage and use of a syringe by a nurse, and then goes home and administers his or her own insulin shots.

However, individuals whose hands or arms do not allow them to physically do the tasks themselves, but who are fully capable of understanding the procedure and instructing their paid unlicensed Personal Assistant to "be their hands", by law cannot use that Personal Assistant, and must have a nurse or CNA perform the task. Advocates describe this as an "inadvertent" effect of how nurse practice acts were written, but discriminatory nonetheless.

The Self-Directed Care Act is seen as a solution to this discrimination and also as a major step forward in strengthening the rights of people with disabilities to self-determination, unhindered by restrictive and unnecessary regulations.

For Luther Smith, who is personally affected by this Act, the passage of the bill represents the triumph of common sense over bureaucratic nonsense. "For a person living with pitifully small government-paid services, seeing it being spent inefficiently is very difficult. As government funds for Personal Assistance are always shrinking while the need is growing, anything we can do to allow the person with a disability and their Personal Assistant to do the most they can together is both the most cost-effective and most empowering way for the job to get done."

The legislative budget assumes 500 people will receive more care in their own homes rather than more restrictive and expensive facilities due to SHB 1880. This will result in an estimated savings of $1.3 million in total funds to the public taxpayer over the next biennium.

While advocates see these savings in a positive light, they are also concerned that pressure to reduce costs could translate into people with disabilities being forced to self-direct their care when they do not choose to do so. A study contained in the Act will examine whether coercion is a factor in consumers or providers doing self-directed care. It will also examine consumer satisfaction with self-directed care, service quality, and consumer safety.

The bill’s prime sponsor for three years has been Representative Eileen Cody (D-11), a nurse at Group Health. The nursing community resisted any change to the Nurse Practice Act, raising concerns about people’s safety and the liability of health professionals treating a person who chooses to self-direct their care. In response to these concerns, the Act makes clear that the responsibility to choose to self-direct care and to instruct and supervise the Personal Assistant lies solely with the person with the functional disability. The Act addresses liability concerns with a section stating, ". . . the licensed health care provider incurs no additional liability when ordering a health care task which is to be performed through self-directed care."

Advocates and people with disabilities say they will work with the state on revisions to the Washington Administrative Codes, and on a plan to educate consumers about this important new civil right.

The main features of SHB 1880, the Self-Directed Care Act include:

  • Definitions of Self-Directed Care (see article above), Personal Aide and Health Care Tasks;
  • Assurance that health professionals incur no additional liability when a person chooses to self-direct care;
  • A registry of Personal Assistants who work with people who self-direct their care;
  • A registry of Personal Assistants about whom there are substantiated findings of abuse, neglect, financial exploitation or abandonment of a vulnerable adult;
  • An internal DSHS quality improvement standards committee;
  • Coverage by the vulnerable adult abuse statutes for people who self-direct care;
  • Permission for DSHS to refuse to pay Personal Assistants who do not pass criminal background checks; and
  • A study of the impact of self-directed care.