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National Empowerment Center - Articles

Personal Care Attendant (PCA) services available to people with psychiatric disabilities

By Patricia Deegan, Ph.D.

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  • Imagine being able to hire the people that you want help from.
  • Imagine being able to train the people you hire to assist you, in exactly the ways that you want support.
  • Imagine being able to fire the people who work for you if they are not doing a good job.
  • Imagine Medicaid giving you the money to pay your support "staff."

Does this sound too good to be true? Read on to find out how you might qualify for this unique type of service opportunity.

Lea Morin has been receiving services in the mental health system for 27 years. For the past seven months Lea has had a personal care attendant (PCA). Lea says that PCA services are very different from traditional mental health services. 'I had my first breakdown 27 years ago. I am diagnosed with manic depressive disorder and I have diabetes and I have a shoulder injury. I've used all the traditional services, including case management, group homes, clubhouse, supported housing, medication, and day treatment. In all of these traditional mental health services, the workers get paid to do a job that somebody else defines. They get paid by their respective organizations. For instance, my case manager may work with me, but she doesn't get paid by me or hired by me or trained by me. Wouldn't it be amazing if we were in charge of our case manager's pay checks? They would work a little harder maybe!" She continues, "With a personal care attendant, I actually hire the person and train him or her to assist me. I also take care of the paperwork so that Medicaid gives me the money to pay my PCA each week. That really puts control in my hands."

Lea is approved for 16 hours per week of PCA services. She uses this support in a variety of ways, including helping her with self-care related to her diabetes as well as heavy chores that would otherwise hurt her shoulder. However, there are specific ways that Lea's personal care attendant assists her with her psychiatric disability. For instance, Lea says: "Vacuuming frightens me because of the loud suction noise. I hear frightening voices sometimes when the vacuum is on. So when my PCA vacuums, I leave my apartment and go downstairs until she is done. Also, having a psychiatric disability and being on SSI means I am in the lower socioeconomic sphere. I can't afford a car and public transportation is limited. But on an emotional and psychological level I can't afford to be isolated. My PCA will give me rides to the clubhouse, food shopping, doctors appointments, etc. I'm a very sociable person. I need contact. My PCA is my friend and we do things together. Sometimes we just listen to the radio together or go out for an inexpensive meal or she cooks a meal for me if I'm not feeling up to it. I also take a lot of different medications and my PCA helps me keep them organized and we always check to make sure I have enough."

There are other people with psychiatric disabilities who use personal care attendants for other types of support, including getting help with hygiene and getting out of bed when severely depressed; getting support during times of feeling suicidal; being driven by personal care attendant to work or appointments; teaching your personal care attendant how to help you during flashback experiences, teaching your PCA to help you do reality testing if you're having frightening, suspicious or paranoid thinking, etc.

Although personal care attendants were first developed by and for people with physical disabilities, it is possible for people with psychiatric disabilities to gain access to these services. Eligibility requirements for obtaining a personal care attendant vary slightly from state to state. Essentially in order to qualify you must:

  1. Have a disability (such as being diagnosed with mental illness) that interferes with your ability to function at work, school, socially, taking care of yourself, etc.
  2. Be Medicaid eligible
  3. Need at least 14 hours of personal care assistance per week (this varies somewhat from state to state)
  4. Be able to learn how to interview, hire, train, keep records, and pay your PCA. (If you are unable to do #4, some states have "surrogate" PCA training programs where you get to decide who will assist you in hiring, training, managing paychecks, etc. for your PCA.)
If you are interested in learning more about personal care attendant services in your state, contact your local or statewide Independent Living Center.

Personal Care Attendant services can mean the difference between being institutionalized and living independently in the community. As Lea Moran says, "Personal Care Attendant services are wonderful! There is so much freedom. The PCA program treats you like an adult. It gives you your human dignity and pride and rights. I feel that I want human dignity and independence as an adult because I am an adult."