Tuesday, February 03, 2009
Miss Bevin goes to Washington--Olympia, Washington
Today Sarah, Bevin, and I went to Olympia to lobby our legislators. (My two daughters and me.) Washington state is facing at least 8 billion dollars in debt over the next couple of years. In response, Governor Gregoire, recently re-elected Democratic governor, published a budget proposal for the next 2 years. Not pretty. Cut that go deep into the bone. The state constitution mandates a balanced budget. I don’t envy the governor or the legislature.
One proposed cut I suspect few folks noticed. Beginning May 2008, total wipeout of Adult Day Health Services. This hits me personally because my daughter Bevin attends an adult day program 5 days a week. Though we’ll be impacted by these cuts in a profound way, we won’t be left with the absolute horror that will confront many families and many of those receiving adult day health services. We met many of these people today. And I’m even more convinced these cuts are a horror. If you live in Washington, please read this and lobby your legislators SOON.
Adult day health services are funded largely through medicade (that means the state must mostly pay). Folks who attend are elders and handicapped adults who can’t care for themselves. These day programs provide a few hours of respite for care givers. And they provide nursing oversite for some very fragile adults--seniors with Alzheimers, adults with brain injuries, physically and developmentally disabled adults.
I went with my daughter Sarah, who lives with her husband and four children in Bellevue, and with Bevin, my handicapped adult daughter. Bevin is physically 29 years old--developmentally (think IQ) at about 18 months. Think of Bevin as a very experienced but still profoundly clueless 2 year old (sort of). We visited the offices of two senators and three legislators.
Here are the people we met today:
Chris. A developmentally disabled and handicapped adult man. He is the only child of a father and mother who have cared for him at home all of his life. His parents are at retirement age, worrying about what will happen to their only son when they die. Chris has been at an adult day health service program for about two years. In that time, he has expanded his world. Learned what it means to have a world that doesn’t revolve around him but is much bigger. He was so excited to be there today to tell people how much he loves his program. For the first time, his parents can see a successful path for him to move into the larger world and to survive--successfully--once they are gone.
Christy. A developmentally disabled and handicapped adult woman. She lives at home with her mother. She is blind, profoundly developmentally disabled, and recently had a kidney transplant. Her program allows her mother to keep her daughter at home. Christy was excited to be there as well.
Jane. A an adult woman with downs syndrome. She was a crazy lady. Excited about being there. Full of stories about what would be happening next week at her program--at the top of the list painted fingernails. She is the only child of retirement age parents. She lives at home with them. This gives them a way of looking forward as well.
Mildred. She was there alone--another woman nearing retirement. She has a profoundly disabled adult daughter who lives in a group home and visits every other weekend--her only child. She has a husband who suffered cardiac arrest two years around with profound brain damage. Now her husband has no short term or long term memory. He needs constant care. The day program allows her to have some time to herself during a week. Makes it possible to keep her husband at home rather than putting him in a rest home.
We gathered in the cafeteria at the capitol. Folks in wheel chairs. Seniors with severe health programs and with dementia. All of these people attend these day programs.
Without these programs, these people will be forced into rest homes, families will be forced to quit work. Lives will change in sad ways--ways that shouldn’t be acceptable.
My daughter Bevin has no skills. She loves to hang out. Loves to ride the bus. She goes to day programs. This keeps her engaged in the world, happy. If she is left hanging about the house she either goes under a blanket and sleeps, becomes in essense an infant. Or she becomes angry and resistant. With a place in the world, she is able to live in a lovely group home during the week. With girls who talk and laugh--some even have jobs. These girls are much higher functioning than Bev and provide a wonderful environment for her. Without the day programs, she will probably end up living in a much more institutional kind of place. Or I will be forced to give up my work and my life to take care of her. Now we both have good lives. But after today, I don’t think my story is what folks should think about.
Folks should think about Chris and Christy and Jane and Mildred. These people are at the edge. If things fail for them, our society will still pay. And more. For emergency services. For nursing homes. But everyone will lose.
For pictures of the day on Facebook: Miss Bevin Goes to Olympia