Bob Rose passed away last week. I know you don’t know who he is and that’s the tragedy of his short life. But Bob was only 17 years old when he died of complications due to Duschennes Muscular Dystrophy and what’s most heartbreaking is he died alone.
Bob had lived in a group home from the age of eight years old when his parents were unable to care for him any longer and made him a ward of the state. Unlike the title character in the film Rory O’Shea Was Here, played by James McAvoy, he didn’t have an electric wheelchair nor did he ever get a chance to live out of the group home.
My husband, Tim McIntyre, a special education teacher met Bob just over a year and a half ago when Bob became his student. Touched by Bob’s plight my husband did his best to try to improve the quality of his life. However this was not my husband’s responsibility. He did this out of the kindness of his heart.
Because Bob rarely got out of the home for any social situations my husband did his best to find ways to include him in the typical world of a teenager such as movies and the prom. Because he was medically fragile and couldn’t get around without his wheel chair my husband couldn’t transport him in his car. The local shuttle service that serves the disabled community said he lived a block out of their jurisdiction. Therefore, my husband drove from Whittier to downtown LA to get him a contract with a transportation service that would do the job.
When the group home decided to relocate to another city this took Bob out of the school district and out of my husband’s class. I know my husband would have visited him in the hospital had he known. The group home didn’t have the extra personnel needed for someone to sit with Bob and that’s why he passed away without anyone by his side.
What bothered me the most, while he was alive, Bob needed a power wheelchair. The strength of his arms had been increasingly wasting away and he couldn’t manually move his wheelchair on his own by the time my husband met him. He was on a waiting list for years to receive a chair, which would have given him some freedom of movement but now it’s too late.
What Bob needed was an advocate. Most parents of disabled children are the best advocates for their child. But even then it’s an uphill battle. Most agencies who provide aid to the disabled have a “don’t ask, don’t tell policy” about available services so if parents aren’t aware of what they can get to help their child they won’t know to ask for it.
However pointing the finger at these agencies is not productive either. Considering the budget cuts over the years there is an incentive not to disclose what’s available so as to keep their finances in check. Because of the budget crisis in the state these agencies are even more strapped.
Now the Governor wants to take more money away from the disabled. In his new budget proposal he plans to eliminate IHSS, which is In Home Supportive Services. This allows the elderly and the disabled to remain in their own homes, for less cost to the state than the group homes. This was the goal of Rory O’Shea in the film, to live independently with another disabled friend and have in home care instead of life in an institution.
A disabled person living in their own home can receive IHSS for about $1,500 a month. This enables them to live independently or with their family where they will receive the needed love and patience that is often lacking in the group home situation. However, group homes cost the state as much as $5,000 a month per individual.
I’m sure the governor is hoping most people will take the hardship with the loss of finances than putting loved ones in state run facilities. However that’s gambling and could eventually cost the state over three times as much if people so choose to place their relatives in group homes.
But the state continues to give tax breaks to the wealthy whenever they purchase recreational items such as yachts and luxury RVs. Wouldn’t a wheelchair for a dying boy be money better spent?
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1 Lin Chrivia // Jun 3, 2008 at 9:29 am
It is a tragedy that some politicians seem to believe they have no choice but to balance a budget by slashing services to our most needy citizens.
I am a member and staff of the United Domestic Workers of America whose 56,000 strong members provide IHSS services to the blind, disabled and elderly in California. We are currently putting up one of our strongest fights in Sacramento to assure that our members’ clients retain the services they need to stay safely in their homes.
Shame on all citizens that we allow a tragedy such as what happened to Bob Rose and hurrahs and thanks to the Tim McIntyres of the world.
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