Thursday, October 22, 2009

Consumer-controlled personal assistance services (PAS)

There is no doubt in my mind but that one of the great achievements of the disability rights movement is the development and funding of a PAS program that enables people with disabilities to hire, train, and (if necessary) fire a PCA, but it is, nonetheless, a very difficult thing to do.

A PCA becomes much more than "just" an employee. He or she becomes intimately involved in the life of the person with a disability. When the prevailing model of "helping" people with disabilities was the medical model, the person with the disability was viewed as the "patient," and the "service system" decided what services that person needed, and then provided them, often in ways that the disabled person found unsatisfactory or worse. So when Ed Roberts and others developed the consumer-controlled PAS model, it was an enormous step forward. The person with the disability was able to shed the role of "patient" and instead was able to participate in the larger community, with PAS providing many of the services necessary to make that possible. The person with the disability, instead of being seen as somehow deficient, instead became the expert on what services were needed and how they should be provided.

In the teaching I've done over the years about this model, I often use the example of getting a shower vs. taking a shower. In the medical model, the shower is scheduled according to the needs of the provider or the institution. The person with a disability is objectified, and the shower is carried out in ways that may be personally humiliating (like getting naked in front of someone who has power over you). The water may not be at the temperature the person would like. The undressing, washing, redressing, and so forth is being "done to."

In contrast, the PAS user decides when he or she wants to shower. The PCA is instructed on personal preferences (water temperature, type of soap, how many towels to use, etc.). Individual needs direct the ways the service is carried out. In both cases, the end result is a clean person, but the method of achieving it is quite different.

So, although I've often lectured and written about how the person with the disability "hires, trains, and (if necessary) fires the PCA," in actual practice it is not at all that simple. The relationship between the PCA and the service user is complex and quite personal, and the decision to fire a PCA will almost certainly lead to emotional pain all around.

The hospice model has many similarities to the disability rights model, in that the dying person is seen as the center of a complex web of services provided by various people (nurse, social worker, chaplain, home health aide, etc.), but always with care and attention to what the dying person wants. When I became too weak to shower by myself I specifically chose not to have that service performed by a PCA, but instead by a home health aide who works for hospice, because it felt more comfortable emotionally. My home health aide, Nancie, is someone I feel very comfortable with, but, at the same time,. when she is showering me there is a certain impersonality that helps me to cope with my sense of loss and inability to care for myself. That's my choice; another person might make a different one. In either case, hospice is there to support me and ensure that I am getting my needs met.


  1. This is extremely important and valuable information. Thanks SO much for sharing it with us.
    Love, Hopey
    in Iceland

  2. Hi Judi,
    When I had home care, it was not good.
    A couple of the carers were good the rest not good at all.
    They were worrying,they could not use the hoist safely and they removed the skin off my heels by causing blisters by not placing my feet correctly in the motomed.
    Richie does all the showering and other personal things for me now.
    Much less stress than before.
    Hope today is a good day for you.

  3. Herrad makes some importamt points here. Clearly, he is the expert on how to use the equipment safely, but the caregivers weren't listening to him and as a result he was injured. This is why the power to hire and fire is so important--if the caregivers are not acting in accordance with the disabled person's wishes and instructions, in the PAS model he could fire them, whereas in the medical model he had to go along with their decisions as to how he was treated. It all comes down to issues of power and responsibility. In developing the disability rights model, power was shifted from the agency or "the system" to the disabled person--this was a profoundly radical act.