Why you should care about Advanced Home Health Aides

On Monday of this week, over a dozen people from CDR joined a broad coalition of stakeholders in Albany to meet with members of the the Senate Higher Education Committee, including its chairman, Senator Kenneth LaValle. We were there to convince the Committee to pass legislation creating Advanced Home Health Aides (AHHAs), specially trained workers who would be allowed to perform health related tasks that will allow people with disabilities, and older adults, to receive these necessary services in their own home.

Right now, in New York, many people with disabilities are forced into institutions against their will because the law does not allow them to receive needed services and supports at home unless they are self-directing. Unless a consumer is self-directing, New York law does not allow an attendant to do things like cut their fingernails or administer eye drops, switch on a ventilator or change an ostomy, or administer their medication, outside of an institutional setting. If a New Yorker needs those services, right now they have to leave behind their community, their job, their life, and go into an institution, where a home health aide or a personal care attendant can do those things.

The reason for this is that a nurse is allowed to assign these tasks to a worker in what is called a “certified setting” such as an institution, but not in a non-certified setting. These tasks are already being performed by people who are not nurses. The Advanced Home Health Aide proposal creates a new class of workers who have already worked as a PCA or a home health aide for at least a year, and who have taken at least 40 hours of additional training and passed additional tests, and allows those workers to perform these health-related tasks in a non-certified setting: a house or apartment.

You might be thinking, “hang on. I use Consumer Directed Personal Attendant Services to receive those health related tasks in my own home. Why do I care about Advanced Home Health Aides?” That’s a great question. Consumer Directed Personal Attendant Service (CDPAS) is a great way for some people with disabilities to receive these services in their own home, but as you probably know, it is not for everybody. CDPAS requires the consumer to recruit, hire, train, supervise, schedule, and if necessary fire their own attendants. That can be a lot of work, and more people with disabilities would be able to live in the community if they could have an agency do that work for them. The AHHA proposal allows people to receive many health related tasks in the community through the use of an agency to provide the attendant. On top of that, CDPAS is not available in every part of the state, and it can be difficult for consumers to recruit attendants. The AHHA proposal will help many people who are not served by CDPAS to receive these health related services in the community.

By way of example, consider the cases of two people, A and B, who have multiple sclerosis, a progressive disability. Both of these people require the exact same services and health-related tasks. A uses CDPAS, which means that she has had to find people willing to work as attendants, train them, plan a schedule for their work, supervise them, and deal with having to fire them if that becomes necessary. This is a lot of work, but A does it because she wants to live in the community. By contrast, B, whether through temperament or ability, is not able to do all of the work of hiring, training, scheduling, and supervising her attendants, and she would like to be able to hire an agency to handle these tasks for her. Not everybody is cut out to be an employer or a manager. Under the current system, B cannot live in the community, not because there are no agencies to help her, but because she cannot receive health related tasks through an agency. A and B lead very different lives: A participates in the life of her community; she works; she visits friends; she controls her own life and her destiny. B is stuck in an institution, where she does not want to be: she receives a shower once a week if she is awake in time for her turn; she eats when they tell her to eat; she cannot decide who visits her and when. This is not because A requires a different level of care; it is because the law will not allow B to receive health related tasks through an agency.

In addition to this, we all change as we get older, and even though CDPAS works for A today, it might not work for her fifteen years from now. She might no longer want to, or be able to, recruit and hire and train and supervise and schedule her attendants. A’s right to live in the community should not be based on how good we are at being consumers in CDPAS, and having AHHAs as an alternative will help make sure that B can get out of the institution, and that A can stay in the community.

Is the AHHA proposal safe? CDR has participated in the workgroup that created the AHHA guidance document, along with a broad cross-section of stakeholders that included health care providers, consumer groups, independent living organizations, nurses, home care providers, and representatives from the Department of Health. The workgroup spent a lot of time and thought on the safety of the consumer, and made a number of recommendations relating to safety in its final guidance. First, an AHHA must have been trained as a home health aide, and must have worked as a home health aide or PCA for at least one year. Second, an AHHA must receive a minimum of 40 hours of additional training on AHHA tasks, assignment, supervision, and communication, and must pass subject area specific tests. Third, an AHHA, even after meeting these qualifications, cannot perform health related tasks unless the supervising nurse has assigned them. This means that if the nurse is not sure that the AHHA is able to safely perform the task, the AHHA can’t perform it.

But is it safe, I hear you ask. Keep in mind that nurses are already allowing family members to perform these tasks. Keep in mind that CDPAS attendants are able to perform them, and that consumers in CDPAS have better health outcomes than people in institutions at a comparable level of disability. Keep in mind that safety is relative, and that the Disability Community knows too well that institutions are not safe places. People in institutions are on someone else’s schedule for eating, for going to the bathroom, for bathing, not to mention the very real danger of being abused by attendants. Over half of the people who go into in a nursing facility are dead six months after the day they check in. In New York, a person in a nursing facility only receives 44 minutes of attention from a nurse per day: contrast this with a person whose AHHA is attending them all day long. Are AHHAs safe? That might not even be the right question.

The Disability Community has pushed for the creation of this program because living in a certified setting is not living in the community. It is not living in freedom. People with disabilities have the right to live in the most integrated setting possible, a right that was recognized by the Supreme Court of the United States, and a right that has been affirmed in New York by Governor Cuomo.

A broad cross-section of stakeholders, including health care providers, consumer advocates, home care providers, advocates for older adults, the nurses association, and many other organizations, has called on the Legislature and Governor Cuomo to create AHHAs this year. Even though all of these organizations support this, the proposal is being held up in the Senate Higher Education Committee.

We need Senator LaValle, and the whole Higher Education Committee to support our right to live in freedom, not to stand by a status quo that imprisons our people and leaves us to die in institutions. CDPAS attendants are already performing these tasks in the community. Home health aides and PCAs are performing the same tasks in institutions. This is a small change that will make a big difference.

You can contact Senator LaValle at lavalle@nysenate.gov, at 518-455-3132, and at 631-473-1461. You can find your local Senator at www.nysenate.gov. Tell them it is important to support the creation of AHHAs and the rights of people with disabilities to live in freedom.