Monday, June 20, 2011

wanting to live as independently as possible


How will my child fare when he leaves home? And what will happen to him when I'm gone?

These are questions most parents worry about. But they weigh especially heavily on the parents of children with autism, Down syndrome and other developmental disabilities.

"Parents say this all the time: 'When I'm no longer here, I want to know they're still going to have a place to live and somebody is going to make sure they're OK,'" said Jim Whittaker, executive director of The Arc Jacksonville. "That's the biggest fear the majority of families have."

It's a fear that will become even more common in coming years, as the growing number of children with disabilities become adults with disabilities.

When The Arc recently began moving forward with plans for a 32-acre community near Beach and Hodges boulevards - planning to break ground in 2013 and have the independent and semi-independent living ready in five to 10 years - Steve and Joy Gutos were among those who viewed it as a godsend.

Their 25-year-old son, Ryan, lives at home now and has a part-time job as an office assistant at the Duval County Public Defender's Office. But he would like to eventually live in his own place. And his parents would like to know the place is a good fit for him, not only now, but in the future.

They've spent years researching options near and far, not feeling quite comfortable with group homes or supported living in the general community. Something like the Hodges Community seemed like the perfect mix of independence and structure.

"We're not saying the other alternatives are wrong, but we believe this is what is best for our son," said Steve Gutos, a board member at The Arc. "It's certainly a choice that needs to be there for everyone."
Not everyone agrees.

The federal government has proposed a rule change to Medicaid - specifically the Home and Community-Based Services Waiver - that would mean such funds could still be used to live in group homes and supported living in an apartment or condo, but not for something like the Hodges Community.

"It's not going to kill it," Whittaker said. "But it is going to make it much more difficult for people who don't have means to live there."

The reason some want the rule: They believe a planned community like this is a step backward toward the days of institutions. And they say the rule, which would only permit funding for care that allows patients to "engage freely in the community," would ensure the inclusion of disabled adults into society.

Supporters of The Arc's plans say the community would be anything but institutional - and would be a better fit for some than a small group home or supported community living.

"The Arc Jacksonville and these families aren't saying to other families we want to take away your choice," Whittaker said. "We just want this other choice."

So during a public comment period that ended on a Tuesday, supporters of the Hodges Community have been writing letters to the Centers for Medicare and Medicaid Services (CMS).

One of those letters was written, with the help of his mother, by Ryan Gutos.

He and his parents have visited some very nice group homes. But he told his parents he didn't want to live there, that they seemed too restrictive. And the idea of trying to live mostly on his own, in the general community, didn't appeal to him (and concerned his parents). A community designed for adults with disabilities excited him (and gave his parents peace of mind).

In his letter, he explained that he has lived at home with his parents and younger sister, but eventually would like to live in a neighborhood with his friends. He wants to drive a golf cart around the community, hang out, go to church, listen to country music and keep working at the Public Defender's Office.

"If this rule is passed, I won't be able to live there," he said. "Please allow my funding to stay with me no matter where I choose to live."

In her letter to CMS, Joy Gutos explained there isn't a "name or label" for her son's disability, other than that he is developmentally delayed. She explained many of the things he can do. Dress himself, get ready for work, ride his bike around the neighborhood, win over people with his endearing demeanor. But she also said, "Ryan will never make wise decisions. He always will be vulnerable."

She described how he can count money if he tries really hard, but can't tell how much he should get back from a transaction. He won't give himself medicine. He doesn't turn off the shower unless told to. And just when they think he could live in the general community, there is some incident that reminds them he needs more security and supervision.

"If he has these two things, he will surprise us, as he has many times in the past, not with his disability, but with his ability," she wrote. "The Arc Jacksonville has plans to build exactly what we're looking for."
She pointed out that the rule will continue to allow this funding to be used for hundreds of retirement communities in the state. But if enacted, it won't be available for the small handful of communities developed or planned for disabled adults.

Could Ryan continue to live at home? Absolutely, she said. But is it the best thing for him? Not at all. He doesn't want to live at home forever. And, of course, the reality is that he can't.

"There are no other family members who can take Ryan in when we are gone," his mother wrote. "This is his future. Please do not impose this rule on us."

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