An El Dorado County man says the path to getting state paid care for his 24-year-old autistic son was too long and rough.
Jason Shapiro asked for a Supportive Living Services for his son Rick shortly before he aged out of the public school system at age 22.
That program allows Rick to live in his own residence with 24-hour care. Jason estimates that his son functions at the level of a one-year-old child.
“I came out of the workforce we got him back, so for the last two years Rick’s been my only job,” said Shapiro.
But the non-profit agency known as Alta California Regional Center, tasked with administering state funds for the developmentally disabled, ruled that Rick was more suited to a group home. His dad said that was tried but that his son’s behavior got worse.
Alta California also said that Rick had to be able to decide for himself whether he wanted to live in his own place and be able to communicate his wishes to a helper.
“Well if he could and he understood the meaning of that, he probably wouldn’t need these services,” said Shapiro.
Disability Rights California – an advocacy group for the developmentally disabled – is also taking up Rick’s cause, saying there is nothing in the law that requires Rick to communicate that wish.
An administrative law judge ruled after an extensive hearing that Rick would benefit from 24-hour care in his own residence. It still took half a year for arrangements to be made, which Shapiro characterized as foot-dragging to save money. He said the three and half-year process was evidence that the agency was trying to save money rather than act in the interest of his son.
An administrator for Alta California said they always intended to comply with the judge’s ruling – but did not say why they fought the application on several grounds, or why the seven month delay citing confidentiality rules placed on client information.
Disability Rights California attorney Jonathan Elson released a statement:
“SLS is an important alternative to group-based living arrangements and has been instrumental in helping people move out of institutions into the community.”
Elson also stated that many clients are not suited to group living arrangements and that too often services are slow in coming despite going through an arduous hearing procedure. He also said there is a narrow opportunity for further legal recourse to speed up the process even after winning an administrative hearing.
Shapiro says his advice to other parents is to persist.
“The story is don’t give up hope and whatever you do make sure that if you need help to reach out for it,” said Shapiro.
He plans to start an advocacy group for the parents of autistic children and make use of all that he has learned in his three and half-year struggle.