When my son, Matthew, was born with a developmental disability, doctors didn't expect him to live more than 12 years. Today he is 22, happy and growing in independence. The doctors credit his survival partly to the care and love he receives from living at home.
Matthew has Dandy-Walker Malformation, a rare disorder involving brain development prior to birth. He is unable to speak and can walk only with the support of a walker. I chose to keep him home, but it hasn't been easy.
Respite -- temporary relief for caregivers -- is an essential service I need to keep Matthew at home. It breaks my heart to think about what it would be like to place him in a group home.
That is why I'm especially concerned when I hear politicians talk about slashing Medicaid, which funds respite services for Matthew and more than 700 other Western New Yorkers. Although respite receives little state funding -- it's almost entirely federally funded -- I fear the Medicaid debate might result in cutting services in the future.
In 1996, I was a single mother of a 13-year-old son, struggling to maintain my job, family and care-giving responsibilities. There was no one to call for help. I lost jobs because Matthew would often get sick. I could rarely give my 11-year-old daughter the attention she needed. Then my neighbor told me about respite. It sounded too good to be true.
I've learned to trust the respite staff over the years. They know Matthew's needs. They understand the sign language we've developed so he can communicate. Just because he is unable to talk doesn't mean he's unaware of what is happening. Matthew understands everything he hears. While he is at respite every other weekend, I'm able to relax and engage in everyday activities. I'm also able to spend precious time with my daughter.
When I tell Matthew it's time to go to respite, he becomes excited and starts packing his bags. His life has become so enriched and he's been able to establish more of an individual identity.
We live in a mobile home with narrow halls that won't accommodate his walker or wheelchair. But at respite, Matthew can move freely with the aid of his walker. He likes to follow around the male staff members, who have become his role models and friends. Matthew is also able to receive baths, thanks to the handicap accessible bathrooms. While at home, I sponge-bathe Matthew at the kitchen table. He hasn't been in our tub in four years. It is just too hard to get him in and out.
Now he socializes with other respite attendees and community members as they visit parks, eat at fish fry events or go shopping. These activities are especially a necessity in the winter, when it is much harder for me to transport Matthew, who weighs 200 pounds.
I can't imagine not having respite services. You can't appreciate how difficult it is to care for an adult child until you've actually walked in the parents' shoes. You want to be able to keep them home, but you need help.
There's much talk these days about how problematic Medicaid is, but little discussion of the tremendous importance it has in lives like mine. I look at my son and wish more people could understand what Medicaid means to us. God gave me Matthew to take care of, and I'm doing the best I can.
Joan Urban lives in Hamburg.