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| Bill McCool |
My friend Arté lives in an apartment on Washington Street. I have known him since he was three years old. Today, he is in his mid-thirties. He lives in a spacious apartment, has a job he enjoys, goes out to the movies and shopping, listens to music, and is greatly loved by family and friends. None of this sounds unusual.
Everyone I know who knows Arté will comment about his smile. When his face lights up, you light up too. During the summer, he volunteers at a camp for children with and without disabilities. He attended the camp when he was kid. He knows first-hand how important camp is to them. He knows they love the pool, being with their friends, being outside and playing. He loved it too. All of the kids at camp want their picture taken with Arté and his big smile.
Arté has Cerebral Palsy. He uses a power wheelchair to get around. He cannot stand. He cannot get in and out of his wheelchair or his bed on his own. He cannot use the bathroom on his own. When you realize these things, you might begin to wonder how he does it. Or maybe you don’t realize how significant this is because we see many people with physical disabilities living and working around us every day. It’s so commonplace we might forget to think about how it’s happening.
When he was in his early twenties, Arté lived in a nursing home that had over fifty residents. The place where he lived was wonderful. The folks living there were mostly younger people with the same types of needs as his. The home had lots of fun activities, it had an accessible pool, and it had transportation so that they could get out and about. The staff helped Arté to get his first job; it was part-time, but Arté loved the job. He still has that job.
It’s hard to imagine a young man who would go into a nursing home in his twenties and would then live there for the rest of his life. Arté did not want to live there forever, even if it was a great place.
This is not a story about courage. Arté doesn’t think he has any more courage than anyone else. He is living the life he lives and like everyone else there are good parts and difficult parts.
This story is about how separate pieces of public policy have come together to enabled Arté to live the good and difficult parts on his own terms.
Arté talked to our agency staff when he learned that we were renovating as historical home to be an accessible apartment building. He asked to be put on our waiting list. I admit I was a little skeptical, and asked him if he was sure he wanted to do this. He was sure. He was the second person on our list.
Arté signed a lease and rented an apartment from us. Six year later, he still lives there. He is successful because the planets of his world have somehow come in alignment.
Our building was made possible because of HUD funding that gave us the most of the capital we needed for its construction. It allowed us to put up a three story building with seven apartments and an elevator. We put in wide doorways, accessible bathrooms with roll-in showers, big living areas, and secure entryways.
Just as important as the capital, were the rent subsidies that came with the project. Each resident would pay only 30% of their income toward rent; the subsidy would pay the remainder. Arté didn’t have to work full-time to live there. He could keep his part-time job and afford the rent. If he went full-time, his rent would still be 30% of his income. He could keep his employment and still afford the rent.
Arté would need assistance, but not twenty-four/seven, live-in help. He knew he only needed assistance for particular things at certain times of day. Arté utilized Personal Care Attendants; he needs about four hours a day. He is able to let his attendants into the building and his apartment with remote control door openers. They help him in the mornings to get up, with his personal care, and, in the late evenings, to go back to bed. Arté manages the rest of the day on his own.
A change in Federal funding has enabled folks like Arté to hire, train, and pay for their own attendants, and to utilize those attendants in their home. He would longer have to be in a nursing home to get assistance. Arté is in charge; he sets his own schedule.
Most of us did not know that federal capital to build accessible living spaces, rent subsidies, attendant services were lining up and creating new possibilities for people with disabilities. Most of us don’t know how these things work together, so we might be unaware of how Arté came to live and work alongside us.
Arté fully knows how it works because he is now able to live on Washington Street, the way he wants to live.
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Bill McCool has been the Executive Director of United Cerebral Palsy of
Delaware, Inc. (UCP) for over 30 years. He and his wife Kathy live in
Wilmington. They have two sons.
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This blog post was curated and/or edited by The Ardent Reader, Esther Hofknecht Curtis, BSOL, MSM-HCA. The views expressed in this blog post are those of the guest blogger. Visit Esther's page at www.parrotcontent.com for more information.
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