Disability Resource Center

Personal Care Attendant Program

”In'de'pend'ent, (adj) 1) self-governing; 2) free from influence, guidance, or control of others; 3) financially self-sufficient, self supporting; 4) self-directing.”

The Kentucky Personal Care Attendant Program (PCAP) has one purpose: to enable eligible severely disabled adults to live independently. The program provides financial support that allows the participant to hire a personal care attendant and thereby achieve independence.

What are Personal Care Attendants?

They are the arms and legs of their employer. Their specific duties can be broken down into three areas:

Domestic: Housecleaning, cooking, laundry, and shopping.

Personal: Transferring, skin care, positioning, bathing, range of motion exercises, dressing, grooming, toilet assistance, and bowel and bladder care.

Transportation: Attendants who do drive may transport their employers to appointments, shopping, recreational outings, etc., and may run errands for them. They can also ride tTARC 3 or fixed route bus with or without their employer.

Participant Eligibility

To be eligible for PCAP, a consumer must:

Be 18 or older
Have a disability that results in the functional loss of two or more limbs
Need between 14 and 40 hours of attendant care weekly
Be capable of instruction and supervising attendants
Meet income eligibility criteria
Reside or through this program be able to reside in a non-institutional setting
Be capable or preparing or supervising the preparation of attendant payroll records and employer tax statements (after training from the Center)

For information, call (502) 589-6620.

Testimony

Georgia

I lived in a nursing home for twelve years and some of the situations I saw were unbelievable. I woke up one morning and I found a naked man standing at the end of my bed. It was a resident who they could not control. On numerous occasions, myself and other residents would buzz for staff to come to the room and you could wait for hours because staff would turn off the buzzers at the desk. Imagine yourself living in a house that smelled like urine 24 hours a day. It is not a pleasant experience that anyone would like to live with. One night I went to a Christmas party but didn’t get back until after 11 PM. I had to sit in my wheelchair for over 3 hours until they finally decided to put me in bed because I had not gotten back by 11:00, which was the curfew. Because of this, the doctor rescinded my pass privileges for a month. This is not the way someone in their twenties should be forced to live.

Because my parents had both died and I had no other family, I then became involved with the Center for Accessible Living, and I discovered that I could live on my own with some help. That is where the Attendant Care Program has helped me so much. I was able to get out of the nursing home and start living on my own, which I have done for the last nineteen years. This program has been invaluable to me and to so many others who live on their own with the help of the Attendant Care Program. There are so many others who can greatly benefit with more funding. You don’t know what it is like to live in a nursing home. You have hardly any freedom to even try to live a normal life. So many of you take it for granted that when you lie down at night, to go to sleep in your own home, that you will be safe for the night. I know you have read the horror stories about people living in nursing homes, especially young people who have been raped, either by an employee or a mentally disabled patient. This should not happen to anyone and won’t with more funding for the Attendant Care Program. So I ask you, no I beg you, please make more funding available so no one will have to endure that horrifying experience. When I left the nursing home is when my life really began. It is impossible for me to describe the way I really felt. The first time I entered a grocery store to purchase what I really wanted to eat instead of being told what I had to eat, or the first time I answered my own phone, there are just no words to describe it. The only way I can describe my feelings about that is, I was like a bird out of a cage and I want that feeling for others.

Through the Attendant Care Program I can now decide on what I want to eat or what time I want to go to bed, instead of having someone else make those decisions for me. If I want to go out to a concert or to a ballgame, I can do so without having to listen to the nurse’s aides talk about me getting back too late to put me to bed at 8 or 9 PM. Does this sound like the life you want to live -- to be in by 8 or 9 instead of listening to a concert or watching a basketball game? These are just a few of the reasons that it is so important that we have more funding made available for the Attendant Care Program, so others can have the same opportunity that I speak of. Thank you for listening to my story.

There's No Place Like Home

Jackie

Jackie at the Center

My name is Jackie. I was raised by my grandparents. When I had surgery on my hip in my early thirties, I left my grandparent’s home because my grandmother wasn’t able to tend to me anymore. I spent almost a year at Kosair Children’s Hospital after my surgery and then was put into a nursing home.

My experiences in the nursing home were not good. For a woman in her early thirties, I had very little freedom. The staff told me what to do and when to do it, they wanted to put me to bed at seven in the evening. I had no independence as a young adult. I had to sign a paper every time I went somewhere, and if I went out at night I had to back by eleven pm. One night I went to Jim Porter’s Bar and stayed out after midnight. When I returned the staff made me wait until after they did their rounds to put me to bed. They were not very happy with me, but I didn’t care because I am an adult.

While in the nursing home, the facility wasn’t going to pay for an electric wheelchair, which I need to move around independently. With no other choice, a friend gave me a used power chair and shortly after, it caught on fire with me in it at the nursing home. I was scared and unable to get out myself, and yelled for someone to get me out of it.

I used to go to the Center for Accessible Living to get away from the nursing home. I would stay all day sometimes. The Center had regular meetings with me to plan for me to live outside the nursing home on my own. When the nursing home found out that I was trying to leave, I received negative attention. They did not want to help me to the bathroom when I wanted, or give me my medicine when I need it.

Once I was out on my own, the Center for Accessible Living helped me find an apartment, Medicaid provided a power chair and I used a local agency for attendant care. For that agency, I had to be home at five in the evening, so they could feed me and put me to bed. Although I was now living in the community, I still had restrictions on my independence. Eventually, the Center got money for an attendant care program, which I got onto shortly after. In fact, I helped the center and other places in Kentucky get the Personal Care Attendant Program. I protested and advocated for the program here in Louisville. I protested for my rights and for the rights of so many others, though I did not go to jail.

The Personal Care Attendant Program allows me to be the boss of my attendant, so that I can live more independently. I can hire and fire who I want and most importantly, I can set my own schedule on my time. For the first time in my life I was eating and going to bed when I chose to, not when someone else wanted me to. I was able to eat food that I wanted to eat, not just whatever was put in front of me. I now have the choice of doing what I want without being told what to do, I can go to a baseball game if I want to. There have been many changes in the staff who run the program at the Center, but the program has stayed and helped many more people along with me.

My first apartment wasn’t as accessible as it should have been, but it was the only thing I could get if I wanted to move out at that time. I was leaving in a hurry and it was the only apartment that was available to me without being on a waiting list. I lived there for four years until I had to move due to some maintenance problems with the apartment that weren’t being fixed. At that time I asked the Center for Accessible Living’s housing program to help me find an accessible place to live, without breaking my pocketbook. They gave me a list and I went through it filling out applications and calling them. I was on a waiting list for three years waiting for accessible housing, until finally I was at the top of a list and got my new home.

I used the same wheelchair for twelve years, needing a new one in 1990, I still had to wait five years to get the replacement paid for. The next wheelchair that I needed, I researched and found myself, not wanting to wait for the home health agency and their services. I met the owners of the wheelchair company here and advocated for them to get the ball rolling for me. This wheelchair took only three month to get.

The Center for Accessible Living has been at three different locations, the first being on 8th and Jefferson. They moved to 3rd and Kentucky and then to 3rd and Broadway. Now I am an executive board member at the Center. Before that I was on the advisory board for the Council on Mental Retardation. I try and stay active and give back some of what I have learned myself in the community.

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