The Autism News | English
An advocate for de-institutionalization, Mary Paulsen years ago placed her severely autistic, adult son in a group home, hoping he might achieve some level of independence. But Philip, now 45, has started to regress. His violent outbursts require the type of security, consistency and supervision that Paulsen believes can only be found at the Utah Developmental Center. But Utah Human Services officials won’t authorize his transfer from a group home, saying he doesn’t meet the legal requirements (he’s not a danger to himself or others). Paulsen, 73, disagrees and says her appeals have fallen on deaf ears. She and other parents are lobbying for a change in state law to expand enrollment at the Developmental Center. After an accident in his previous group home where Philip was severely burned in a kitchen accident she is taking care of him 24 hours a day, 7 days a week in her Salt Lake City home. In a rare quiet moment Mary gets Philip to sit down and look at a family photo album and name the relatives in the pictures. He pats her on the head in a sign of affection. It only lasted about a minute. (Al Hartmann / The Salt Lake Tribune )
By Kirsten Stewart | The Salt Lake Tribune
In one group home, Philip Paulsen was left unattended and was seriously burned in a cooking accident. While playing with water — a habit when he’s anxious — the severely autistic adult caused $5,000 in damage to a supervised apartment. He was evicted for assaulting a caregiver.
As his mother, 73-year-old Mary Paulsen rounds the corner to old age, she feels the “security, consistency and supervision” her son needs can only be found at the state-run Utah Developmental Center in American Fork.
But with a movement to keep the disabled out of institutions underway for decades, Paulsen and other parents feel shut out of decisions about where their loved ones will live. They’re now asking lawmakers to endorse legislation that would make it easier for parents to institutionalize their mentally disabled children.
SB 160 would require the Division of Services for People with Disabilities to “strongly consider” the preference of a parent or legal guardian when deciding whether to place someone at the Developmental Center. It would guarantee a transfer to the center in cases where the cost is equal to, or less than, the cost of keeping someone at a private nursing home. And it limits the division’s power to move residents to less restrictive settings.
“This isn’t about which choice is better,” Paulsen said at a recent committee hearing. “It’s about freedom of choice.”
Currently, placement decisions for people getting Medicaid-paid services are made by a committee. And the Developmental Center is open only those who are a danger to themselves or others and who are in need of continuous medical care or evaluation.
Disability services director Alan Ormsby can override the committee. He hasn’t taken a position on the bill other than to say the Developmental Center plays an important role. Part of its charge is to “stabilize people with challenging behavioral and medical issues and help them to return to the community,” he said.
While 22 people in three years have transitioned out of the center, very few newcomers have been admitted in. At a time of shortages, as nursing homes are nearly full, the center has 45 vacant beds.
“It seems people can choose to get out, but no one can choose to get in,” said Rep. Margaret Dayton, R-Orem, the sponsor of SB160.
The measure is expected to come before the Senate this week, having won committee endorsement, despite concerns from disabled rights advocates who say it would be fiscally irresponsible to open admission to the most expensive service option in a budget crisis.
“Utah’s waiting list for disabled services has been frozen for 18 months,” said Joyce Dolcourt with the Legislative Coalition for People with Disabilities.
Various studies have shown the Developmental Center costs from 10 percent to 100 percent more than options in the community, such as group homes. Hoping to capitalize on an appetite to contain Medicaid costs, advocates have in recent years argued for the center’s closure.
But parents like Paulsen say the belief that community is always cheaper is partly to blame for a woefully underfunded community system that is ill-equipped to care for those with complex needs.
“For some, institutional care is actually the least expensive option. But there aren’t enough beds in this state,” said Carola Zitzmann, the Holladay mother of a non-verbal autistic adult.
She believes that by denying access to the few beds that are open at the Developmental Center, Utah is in violation of federal Medicaid law, which gives individuals a choice between institutional care or home and community care.
Dean Robinson says bleeding the Developmental Center of clients raises its per-bed costs, which he fears will eventually lead to its demise.
Robinson’s profoundly retarded son Mark, 55, is one of the center’s long-term residents. “Community placement wasn’t an option for us,”said Robinson, a retired dentist living in Orem.
Paulsen, meanwhile, is at a loss to understand why the state rejected her petition to transfer Philip to the Developmental Center.
After his shirt caught fire on a gas stove, burning much of his back and part of his arm, Paulsen took him into her Millcreek home, scrubbing his scabs and changing his bandages with the help of a friend who is a nurse.
He is now at another group home, after his eviction from a supervised apartment for injuring staff last year.
“I know what Philip can be like,” said Paulsen. “I know him better than anyone else, which is why I think I should have some say on his placement.”
Source: http://www.sltrib.com/news/ci_14472014
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