Legislation gives disabled right to self-direct care
Researchers will report outcomes to legislators
It took more than three years to get State House Bill 1880 passed in the state of Washington. Disability advocates say the bill, which passed in July 1999, is simply a civil rights law, but case managers with the state’s Aging and Adult Services Administration in Olympia remain cautious, mostly out of concern for the safety of their clients.
The bill provides disabled individuals in the state of Washington the right to hire and self-direct an individual provider in their own homes to assist them with activities necessary to maintain their health, such as administering medications. "Individuals receiving Medicaid funding have not been able to do this before the bill was passed, and they were at risk of being put into a more restrictive environment," notes Patty McDonald, program manager of the home and community services division of the Aging and Adult Services Administration.
Under the law, the person with the disability/ client is responsible for the following:
• initiating self-direction by informing the health care professional who has ordered the treatment;
• informing the case manager/social worker and providing verification of the treatment ordered for documentation purposes;
• developing the service plan in coordination with the case manager/social worker;
• giving the case manager/social worker the individual provider’s name and other information for purposes of registration with the state;
• giving the individual provider a copy of the service plan and providing training for the tasks requested;
• supervising the performance of the individual provider;
• possessing the necessary knowledge and ability to train the individual provider to perform those tasks;
• asking for assistance in training, if necessary.
Case managers have expressed concerns about the potential for abuse and neglect and their own liability if abuse and neglect take place, notes McDonald. "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. If the disabled person gives the care provider the wrong instructions, the disabled person is liable. If the care attendant refuses to follow directions, then the care attendant is liable."
Case managers who believe a self-directed client is at risk must document and make appropriate referrals; for example, to Adult Protective Services, says McDonald. "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 on the plan of care, the case manager may offer assistance or help the client obtain an alternative. Life is not black and white in the world of case management. Case management is often a series of shades of gray. A person with a disability does 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."
Under the bill, the case manager is responsible for the following:
• identifying, along with the client, the self-directed care tasks;
• documenting the self-directed care tasks in the service plan and sharing them with the individual provider;
• registering and authorizing payment for the individual provider with the state;
• asking the client for verification of the prescribing health care practitioner’s treatment order and document.
If a case manager is concerned about a client’s ability to self-direct care based on cognitive deficits, the case manager may discuss the issue with the client’s physician by having the client sign a release form and granting permission.
To add a degree of protection to disabled clients who choose self-direction, Washington requires that case managers run a background check for criminal convictions and substantiated claims of abuse or neglect on every individual provider hired by a disabled client, adds McDonald.
Give me liberty!
"It wasn’t difficult for me to support the new bill. I see it as a civil rights issue for disabled individuals," says Kathy Woods, RN, BSN, lead manager of nurse delegation and nursing services with the Aging Adult Services Administration. "Lay caregivers have been performing some skilled nursing tasks for disabled individuals for some time. I think that in selected instances for persons willing to accept responsibility for their own care and who understand the risks, self-direction of care should be a private decision."
"There are so many activities we don’t give a second thought — things like taking an aspirin or antibiotic as directed by our physician," notes Mary E. McKnew, a disability rights attorney in Olympia. "I have heard of numerous cases where a disabled individual was institutionalized because they were unable to have certain needs met in their own homes. The state system is built on the premise that we have to protect people with disabilities. That’s a wrongheaded premise. We have to save that protection for those who really need it. We don’t need to protect people who are intellectually capable of directing their own care but simply not physically able to carry it out."
The bill is designed to provide care options for individuals who fit that description. For example, a diabetic with a hand deformity may not be able to administer daily insulin injections, notes Woods. "The individual may have been diabetic since birth and be very well-controlled and yet have this functional disability," she explains. "The individual doesn’t have a family member or friend available to administer the injections, and third-party payers won’t pay for daily home health care. If the patient wants to stay at home, now, under the self-directed care bill, they can teach someone else to inject their insulin. Too often, when you must turn to the state for funding, you lose your civil rights. The state gains the right to say what you can and can’t do in your own home. This bill simply gives that right back to the individual."
Woods’ support does not come without some degree of caution. "I’m concerned that disabled individuals who choose to self-direct their care may not always understand the consequences of incorrectly performed care," she says. "I don’t believe this bill is appropriate for everyone."
The birth of the bill
The effort for self-directed care in the state of Washington started at about the same time discussions about nurse delegation were taking place, notes Toby Olson, executive secretary of the Washington State Governor’s Committee on Disability Issues and Employment in Olympia. "I think individuals from the disability community were going to the hearings on nurse delegation, and they heard a great deal of discussion that didn’t reflect the reality of their lives," he says. "They listened to debates about under which conditions a nurse could delegate authority to perform tasks to personal assistant providers, and that debate left out the person to whom those tasks were performed."
Those hearings on the nurse delegation legislation that passed in 1995 pushed the debate on self-directed care to the front, and public forums were held so the disabled community, state agencies, and health care professionals could share their concerns. At the same time, the state’s department of health was able to fund a study of self-directed care initiatives passed in other states. The study was conducted by a graduate nursing student.
"It was very clear to everyone involved that the nursing student was very skeptical about the entire concept of self-directed care," says Olson. "I think it was very beneficial that she was so skeptical. Her literature search and her discussions with administrators in other states with self-directed care legislation already in place turned her into a convert. I think her conversion made a strong impression on people who had some doubts about self-directed care."
Olson also credits face-to-face conversations between interested parties with helping the legislation pass. "Direct, unfiltered communication is very important. I think the life experiences that disabled individuals shared at those hearings were very eye-opening for many nurses. Nurses enter their profession to help others. I think the nurses involved in the hearings were shocked to find that many disabled people believe that the nursing profession in some instances was robbing them of their autonomy."
"As a health care professional," Woods says, "I want to make sure that people receive appropriate care, but that doesn’t mean that I have to control the entire process. As a case manager, or a home health nurse, or a rehab nurse, I can educate the individual about the consequences of inadequate care. I have to educate them and allow them the ability to stay independent and take control of their own lives."
The state has contracted with two nurse researchers to evaluate the impact of the self-directed care bill. The researchers are mandated to evaluate the following five areas and present a report to state legislators by November 2001:
• consumer satisfaction with self-directed care, including consumer perceptions of degree of autonomy, self-direction, and choice allowed by the self-directed care bill;
• service quality and consumer safety as determined both by consumer and quantifiable outcomes such as hospitalization rates or nursing home placement;
• the number of reports that personal aides abused or neglected consumers;
• the number of consumer neglect or abuse cases that directly caused medical or social emergencies;
• whether the consumer has been coerced into accepting self-directed care or caregivers are coerced into performing tasks they are not trained to do.
The state took the same approach to the nurse delegation bill, using the same nurse researchers to conduct a study of the bill’s impact. The nurse delegation bill allows nurses to delegate certain care tasks to unlicensed personnel trained and supervised by nurses in certain settings such as boarding houses.
"The state has taken a responsible and cautious approach to moving ahead and making sure that the steps they take are appropriate," says Heather M. Young, PhD, ARNP, FAAN, research associate professor with the school of nursing at the University of Washington in Seattle. "Not every older person needs to be protected. Not every disabled person needs to be protected. The state and health care professionals remain concerned, however, about how we can adequately protect the most vulnerable members of our society and still recognize the rights of persons with disabilities to be independent."
Young found that the nurse delegation bill did not cause adverse outcomes, and due to the supervisory requirements, nursing involvement actually increased in some settings. "I think we found that in terms of personal care the outcome appears to be more dependent on whether the disabled person likes and trusts the caregiver rather than whether that caregiver is a nurse," says Young.
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