Fw: Arc and Who Will Care for Dana

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Arc and Who Will Care for Dana

The Arc of Illinois

April 3, 2011

Leaders in The Arc:

Sundays Parade Magazine did an excellent story on the transition of students

with autism into the world of waiting lists and uncertainty for families about

the future for their adult children without community supports. The truth is,

this is a story for every student with intellectual and developmental

disabilities as well.

Parade intends to make this a major topic of discussion during the month of

April. To join the conversation by going to:

http://www.parade.com/fdcp?unique=1301852469119

The Arc of Illinois is about to unveil our plans for statewide campaign this

week. It is loaded with strategies to involve everyone and we all need to work

together self advocates, parents and professionals. Get for ready for LIFE.

Tony auski

The Arc of Illinois

815-464-1832

Who Will Care For Dana?

By Joanne Chen

http://www.parade.com/health/autism/featured/autisms-lost-generation.html

In many ways, Dana Eisman, 20, of Potomac, Md., is like any other young adult.

She rocks out to Train, adores Glee, and eats pizza every week. And this June,

like many of her peers, shell leave school and join the real world.

But for Danaand her parents, Beth, who works in a doctors office, and Rob, a

business ownerthat prospect is terrifying. I want to celebrate, Beth says, but

what I feel is a knife in my heart.

Thats because Dana is autistic. She cant hold a conversation, make eye contact,

verbalize her thoughts, cross the street alone, or control herself when shes

upset. Starting when she was 4thanks to a federal law that guarantees disabled

children an appropriate educationshe has spent her weekdays at Ivymount, a

private school for special-needs students that she loves and that has been paid

for by the state and county. But because Dana turns 21 this week, that support

will dry up when the school year ends, leaving her parents to agonize about the

quality of life their daughter is facing.

In the next 15 years, an estimated 500,000 autistic children like Dana will

graduate out of school systems in the U.S. and into the unknown. Meaningful

programs for them are scarce, and funding even scarcer. Were at the moment of

truth to address the numbers of children aging into adulthood, says autism

activist Walder Fiddle. Their lives are hanging over a cliff, and we must

not let them fall.

Its like a splash of cold water in your face, says Robin Heyd of New Jersey,

whose son is 20. Youre devastated twice: first, with the diagnosis; then,

years later, when you realize that after all the interventions, you still have a

kid with autism and you have to plan his future.

That planning processwhich begins during a childs teenage yearsis called

transition, but many parents cant tell what exactly theyre transitioning to.

Only about 3,500 programs are available nationwide for autistic adults, compared

with 14,400 for autistic kids. Some are little more than day care, while

-vocational programs may consist of participants working for a company in

isolation, doing piecework like shredding paper. Its not what we want for our

kids, says Jeff Sell, a vice president of the Autism Society and the father of

autistic twins. The situation in many places is sad, disheartening, and

disgusting.

Share Your Story of Living with Autism

Of course, decent programs for autistic adults do exist, but they usually have

long waiting lists, says Larry Lam, a New Jersey father whose autistic son,

, is 21. Parents throw up their hands, and their kid sits at home

watching TV.

The Eismans considered 10 vocational-training programs for Dana. Their top

choice, Community Services for Autistic Adults and Children (CSAAC), is the only

one they knew of in their area designed for individuals with autism; the rest

serve a range of developmentally disabled adults. But autism is different from

many disorders with which it is frequently lumped together: Though 44% of

autistic people have mild to moderate mental retardation, some have none at all,

according to National Core Indicators, which collects data on the disabled.

Often, autistic adults capabilities are masked by a lack of social skills or an

inability to articulate ideas.

That was the case with Danauntil a few years ago, when she went to a program in

Austin, Tex., and learned to communicate by typing and pointing to letters on a

board. One of the first things she typed was: I dont want to leave Austin

because no one is going to think Im smart. And: Im so uncomfortable inside my

body. I dont know how to stop myself.

The Eismans were proudand stunned. Says Rob: For 15 years, we thought Dana had

the mind of a 4-year-old. What kind of parents are we that we didnt realize this

wasnt true?

Where are the jobs?

Every week, Dana puts on a blue employee T-shirt to work at a pet store.

Shadowed by a job coach, she unwraps boxes, shelves products, and cleans cages

meticulously and methodically. When a customer asks for assistance, the coach

prompts Dana to reply, Let me take you to someone who can help.

Dana is not paid for her work, which is part of Ivymounts vocational-training

program. Indeed, an autistic adults prospects of landing a paying job are bleak:

Only 20% are employed, one study estimates, and at least 60% of those with jobs

are thought to be underemployed or paid below-market wages.

In the workplace, many autistic adults need support, like job coaches and aides,

which autistic children are legally entitled to. The burden of responsibility

shifts after they age out of the system; once theyre adults, they must ask their

employers or vocational programs for such services, says Ari Neeman, a

presidential appointee to the National Council on Disability. Neeman himself has

Aspergers, a form of autism. Many of them have not been taught the skills to do

that.

A $3.2 million lifetime cost

As Beth drives Dana to a weekly music-therapy session on a brisk spring

afternoon, she is distracted. Shes just heard that an acquaintances child has

received funding for a program. Why hasnt Dana gotten word yet?

The Eismans have learned that finding the right programwhich takes hours of

research, visits, phone calls, and interviewsis just the first step. Getting

into that program and getting funding to cover it are essential for all but the

wealthiest families. Services at CSAAC, the Eismans pick, can cost up to $38,000

a year, and many participants will go there for decades. The steep, recurring

price of many programs and therapies is why raising an autistic child, according

to a Harvard University study, can add up to $3.2 million over his or her

lifetime, compared with the $222,360 it typically takes to raise a child to age

18.

Fortunately, Beth and Rob have been told they have a good chance of receiving

state fundsthe severity of a disability is a major factor, and Dana is

considered more impaired than most.

Who will take care of these kids?

Though legislation to benefit families with adult autistic children is inching

its way through Congress, parents are taking matters into their own hands. For

some families in New Jersey, which has one of the nations highest autism rates,

that may mean moving to a state where theres good coverage and less competition

for services. Other parents are calling local businesses to craft makeshift job

programsor even pooling their resources to buy property and hire support staff

to create assisted-living situations for groups of autistic adults.

Larry Lam formed the Post-21 Club of Bergen County, N.J., to help families like

his find appropriate programs and workshops for their adult children and to

raise funds for those facing shortfalls. Outside Austin, Dan E. Burns is

soliciting charitable donations for the Autism Trust USA, a nonprofit he

cofounded to build a campus for autistic adults, with vocational programs and

small businesses run by residents. In Phoenix, Resnik, the mother of

19-year-old , cofounded the Southwest Autism Research & Resource Center

(SARRC). Two years ago, it started a Vocational & Life Skills Academy to train

adults in fields like gardening and cooking, with the goal of helping them start

their own businesses. SARRC is now planning a residence, too. Its important that

someone take care of our adult children when were no longer able, Resnik says.

The Eismans older daughter, , who is 22 and in graduate school, has said

that shell always be there for her sister, but Rob and Beth do not want to force

that responsibility on her. Since Dana was 6, shes been on the waiting list of

the Jewish Foundation for Group Homes, a nonsectarian agency that offers

staff-supported housing for small groups of disabled adults. However, it can

cost more than $70,000 a year, and the limited state funding goes to those with

the most urgent needs, like a 50-year-old autistic man whose 75-year-old mother

is critically ill.

This year, Dana had dinner at a Jewish Foundation home while her parents hung

out in the living room. Beth describes it as cozy and welcoming. When asked her

opinion, Dana typed out that she liked the girls shed met but felt scared, too.

If I go away to a program, she typed on another occasion, can I come back if I

dont like it?

A growing population of autistic adults

These issues are not going away, because the number of autistic adults will only

continue to increase: Today, one in 110 children (and one in 70 boys) born in

the U.S. is diagnosed with autism, and the numbers have been rising 10% to 17% a

year. Advocates say that the needs of this population must be addressed by the

private and public sectors, such as by building appropriate housing, creating

tax-free savings accounts for parents to use for their adult childrens care, or

providing government incentives to companies that hire autistic employees.

Theyre hard workers, have excellent attitudes, and dont mind repetitive work,

says former NBC president and CEO Bob , who founded the nonprofit Autism

Speaks after his grandsons diagnosis. If I were a business owner, Id say, Bring

them on.

In Potomac, Dana and Beth sit together every night at the antique white desk in

Danas bedroom. Typing sentences to each other on the computer, they discuss

everything: their horoscopes, school, something they saw in the news. As the

Eismans anxiously wait for their version of the golden ticketthe funding letter

from the state disabilities agencyBeth asks Dana: What do you want to do next

year? What is your dream? A good job, Dana carefully types, calling out each

letter as she presses the key. I want to be safe and happy.

APRIL IS AUTISM AWARENESS MONTH

PARADE is launching a national conversation about autism. You can share your

story, meet other families living with autism, find resources and get updates on

ongoing news.

Note: Parade would like to extend special thanks to Autism Speaks and to Adam

Pockriss of stein Communications for connecting it with the Eisman family.

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