Who will care for disabled kids?

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http://www.detnews.com/apps/pbcs.dll/article?

AID=/20060517/LIFESTYLE03/605170401

Who will care for disabled kids?

Advocates push for them to live independently when aging parents

aren't able to take care of them anymore.

Kim Kozlowski / The Detroit News

May 17, 2006

Brown is 46, and has lived at his mother's Grosse Pointe Woods

home his entire life.

Though he is largely independent, his mental impairment has led him

to rely on his mother, Shirley, for meal preparation, transportation

to his restaurant job and other activities. But at age 77, Shirley

Brown doesn't know what will happen to her son when she gets too old

to care for him. " I'd like to be able to keep here with me as

long as I live, but I don't know if I can do that or not, " Brown said.

Brown's dilemma is shared by a generation of parents who find

themselves in a situation that 40 years ago seemed improbable: their

developmentally disabled children, who still need daily assistance in

personal care, employment and finances, may outlive them and need

someone else to provide daily care.

Advances in health care have allowed people with disabilities to have

longer and healthier lives. The Institute for Cognitive

Disabilities at the University of Colorado estimates that there were

97,401 people with developmental disabilities living with family

caregivers in Michigan during 2004. Of those, 24,818 live with

caregivers older than 60.

And despite the strides these parents made for their children, many

are unaware of options that have developed beyond group homes, which

were among the first alternatives to institutional care. Many aging

parents who are still caring for their adult children do not see

group homes as an option.

" A long time ago people with developmental disabilities couldn't live

in their own place but that's not how we view things anymore, " said

Dohn Hoyle, executive director of the ARC of Michigan, an advocacy

organization. " Now we ask, 'What supports does a person need to take

their rightful place in the community?' & #8194; "

Movement gaining steam

Hoyle has observed adult children with disabilities cope with the

unexpected loss of a parent with whom they have lived their whole

lives. The loss is tremendously stressful, especially when family

members do not step up to take the person in and the person must move

to another place, typically a group home.

After they die, it's unfair for parents to put their grieving son or

daughter through another stressful event: moving to an unfamiliar

place, Hoyle said.

" If you keep them at home and continue to treat them like a child,

that's not what's best for them. "

In recent years, advocates for the developmentally disabled have been

trumpeting the idea that people like Brown can live

independently. The movement, called self-determination, has been

gaining steam around the country, but Michigan is the only state with

a written policy that allows people with disabilities who qualify for

government aid to have a say in how their lives will be structured.

" If it's done right, people with disabilities -- no matter how

severe -- can live lives that people without disabilities take for

granted, " said Tom Nerney, executive director of the Wayne-based

Center for Self-Determination. " That's huge. "

Self-determination allows people to set up plans for their lives

based on their individual needs. They can choose to live in an

apartment and hire people to help them with bathing, dressing, meal

preparation or other needs.

Advocates call on state

In Michigan, people with disabilities who qualify for government-

funded services traditionally tap their services through their local

community mental health agency. Following a pilot program in the

1990s, the state established a policy to let people with

developmental disabilities, within certain limitations, devise a plan

for how they'll get care. The plan works by changing the way services

are funded: instead of people with developmental disabilities being

told who will work for them, people can oversee their budget and

decide how to get services.

" It really gives people power, " said Head, consultant to the

state Department of Community Health on consumer-directed

services. " The costs don't change but the power changes. "

State officials were supposed to provide local community mental

health organizations with technical assistance and guidance on how to

implement the plans but haven't yet, to the frustration of some

advocates who want to see more than the estimated 1,000 people

currently involved in such plans. Several counties are moving

forward, including Wayne and Oakland, but advocates are calling on

the state to provide more leadership so other counties can move ahead

in giving people the tools to live lives most take for granted.

" We cannot wait any longer, " said Hoyle, of ARC. " It's convenient for

the system and the providers to stay the same but it oppresses people

to have their lives governed by someone else. "

People with developmental disabilities have enough challenges in

life, which is why government should change the way it funds their

services, according to Nerney, who penned the principles that are now

embraced in self-determination projects in 35 states.

Bob and Doris Dickhudt, at ages 70 and 66 respectively, are still

caring for their 44-year-old daughter, Janet, in their Dearborn

Heights home and feel that is what is best for her. They haven't

formally planned who will care for their daughter when they no longer

can.

" We have not faced that question, " Bob Dickhudt said. " We're just

trusting it is going to work out. We have four other children. We

would expect one of our children to step forward. "

Support staffers offer help

But trust isn't enough, which is why many local ARCs and other

advocacy groups are working to help people embrace the services that

are available to them.

" It decreases the segregation of people and increases the integration

of people with disabilities in the community, " said Carver,

who works for the Center for Self-Determination. " We all have

something to offer to the community. But if we are not in the

community and part of the community, then the opportunity is lost. "

Among those who have taken this step is 55-year-old Sally Marshall, a

Brighton resident with two daughters who have developmental

disabilities.

Last month she and her husband moved her 27-year-old daughter, ,

into an apartment in Howell.

" We've raised our daughters to believe they are contributing members

to society, " Marshall said. " We have expectations for them to see

themselves as capable, independent and self-reliant. "

Six support staff take turns working with Marshall as she

transitions into life on her own. They help her to fix dinner, do her

laundry, go to the grocery store and with catching the bus to her job

and other activities.Eventually those supports will be scaled back as

Marshall gets comfortable in her new life.

Marshall says she is enjoying her apartment, even though she

was nervous at first.

" I am happy, " she said. " I am an adult now. "

You can reach Kim Kozlowski at (313) 222-2024 or

kkozlowski@....