Washington Post article on Down Syndrome & life expectancy

[Guest guest]

Expecting Longer Lives With Greater Risk, Reward

Down Syndrome Generation First to Outlive Parents

By Fredrick Kunkle

Washington Post Staff Writer

Monday, November 10, 2008; B01

Like many people her age, Holden wants to be on her own.

But for the 20-year-old Springfield woman, crossing streets can be

frightening. Keeping track of money is difficult. And fending for

herself is challenging at times for a person who loves to read but

has difficulty with novels above a fifth-grade level.

" A stranger could set a trap on me, " she says between bites of a

cheeseburger at a 's. " Kidnap me. "

Holden belongs to the first generation of people with Down syndrome

who will probably outlive their parents. The life expectancy of

people with Down syndrome has increased from about 25 years in 1983

to more than 50, thanks largely to medical advances. Although

achieving independence has long been the goal for any person with a

disability, increased life expectancy has made the goal more urgent

now that the baby boomer generation is graying.

" It's a big question we all ask, " said Gail on, 55,

executive director of the Down Syndrome Association of Los Angeles.

on's 29-year-old son, Blair, has Down syndrome and a résumé

that many actors in Hollywood would envy, including performances on

television dramas including " CSI, " " Nip/Tuck " and " ER. " But he also

participates in a supported-living day program and will probably

need similar guidance when he is totally on his own, she said.

Estate planning is tricky, as families have to create special trusts

to ensure that their children will be provided for without

jeopardizing their eligibility for Medicaid and other programs.

Openings in group homes and supervisory programs are hard to find.

Deciding whether to make a sibling a guardian can be difficult.

" It's a huge problem, and it's not just a problem involving Down

syndrome but for all people who have an intellectual disability, "

said V. Berns, executive director of the Arc of the United

States, whose headquarters is in Silver Spring. " There's a serious

crisis brewing. There are actually huge waiting lists for services

across the United States. "

In 2006, 61 percent of people with an intellectual disability were

living with their families, and more than 700,000 of them were

living with parents or family members who were older than 60, Berns

said.

" The reality is that the services are not available to take care of

these people in the event that their family member either becomes

sick or passes away, " Berns said. " In a sense, their very freedom is

at stake. "

Anita Mahood of Leesburg said she and her husband encountered many

difficulties, including waiting lists for group homes and other

programs,before finding their 34-year-old son, Bill, a subsidized

apartment to share with another man who also has an intellectual

disability. Mahood's son is enrolled in Community Systems, a

supervisory program whose staff drops by her son's apartment to

check on him, and a group called Every Citizen Has Opportunities,

which provides job training and placement for people with

disabilities.

" This is the first generation of children who will outlive their

parents, " Mahood said. " That's why we worked so hard to find a

solution for Bill. "

Mahood, 69, said she and her husband have set up a special-needs

trust that will provide support for their son after they die.

Although her daughter and son-in-law offered to take Bill in, Mahood

said she decided that she did not want them to accept primary

responsibility.

" I don't feel it's the right way to go, " Mahood said. " Both need to

have their own lives. I feel very strongly about that. "

The LIFE Program that Holden attends at Mason University's

Helen A.Kellar Center for Human disAbilities is in its sixth year,

and it is not cheap. Tuition, which is $16,500 a year for a non-

degree program, is about the cost of a GMU degree for out-of-state

students.

But it also offers a shot at independence.

" With each stage, as with a non-disabled child, you're giving them a

little freedom and watching to see if they can handle it, " said

Jeanne Holden, 's mother. She knows that her daughter might

not realize her dream of becoming a professional teacher and that

she probably will be unable to live by herself without support. But

her daughter also surprises.

" More often than not, they rise to the occasion, " Jeanne Holden

said. " Sometimes you've got to take a deep breath. You take that

same deep breath earlier with your other kids. But you have to let

them go. If they're going to go as far as they can, you've got to

let them try. "

Holden loves movies and musicals, especially " The Three

Musketeers " with Charlie Sheen and " High School Musical. " She often

goes to the movies with friends. She also has been serving as an

assistant religion instructor for young children at her synagogue in

andria and this summer worked as an assistant counselor in a

Fairfax County recreation program. Last year, she spent a week

living in a GMU dorm, preparing microwaved meals and navigating the

campus. She loved it.

" Independent living is to live by yourself in dorms without my

parents and without my siblings -- by ourselves and without my

siblings bothering me sometimes, " she says. She adds that she really

enjoyed fixing her own meals. " I cooked for myself -- I loved that.

Hardest thing to do -- cross a street. That's a big problem.

Sometimes I don't like it when there's an accident. I don't like

cars " crushed up, she says.

A trip to the Metro and a fast-food restaurant with her class last

week illustrates the rewards and possible perils that she faces

along the way. Holden's classes in independent living and community

access combined classroom work and a field trip with four

instructors, 21 students and three former students who work as

interns.

The students, who have intellectual disabilities including Down

syndrome, autism and traumatic brain injuries, hugged often and

exchanged high-fives. At times, they had trouble understanding the

teacher's explanations, but they kept trying. Holden, in particular,

seemed to be bursting with things to say. Thin, petite and with an

obvious sense of poise, she was eager to participate, whether

listing her favorite restaurants or doodling hearts and flowers on a

piece of paper. When she is excited, her voice zooms upward in pitch

like a slide whistle. " Awesome! " Holden squeals when she hears a

classmate's jazzy cellphone ring tone.

Because of her disability, Holden has to work hard at things that

are easy for many others. She did not always understand what the

instructors or people outside the class were talking about. Making

herself understood can be difficult as well because of a speech

impediment and sometimes broken syntax.

Her day began in a literature class with a simplified version of

Jules Verne's " 20,000 Leagues Under the Sea. " Then came an

independent-living session that included an explanation of how to

prepare a tuna sandwich and use the Metro system.

Waiting on campus for the Green 2 shuttle bus that will drop the

students off near Fair City Mall in Fairfax, Holden gets caught up

in teasing insults that ping-pong between her and the class cutup.

The group of eight students and two instructors disembarks in front

of W.T. Woodson High School. At the crosswalk to the mall, there is

a momentary scare when three students step into traffic while the

light is green. Fortunately, there are no cars on the three-lane

street, and the students scamper back onto the curb.

At 's, Holden is first in line. Clutching her pink wallet, she

follows the zigzag maze to the counter and waits for the cashier.

The cashier looks at Holden, then past her, with a look of

expectation that someone else must be doing the ordering.

" Hi. May I have a cheeseburger, please? " Holden says. " Small fries.

And small drink. " " Okay, " the cashier says. " $3.26. "

Holden hands the cashier a $10 bill and two $5s. The cashier takes a

$5 bill, returns the other bills without comment and tells Holden

that the rest of her change is in the chute attached to the register.

Holden lifts her tray and heads for the condiments, then finds a

table with friends. She puts the receipt for her meal into her purse.

" For banking, " she says.

While Holden is eating, a white-haired woman stops at the table and

tells instructor Kime that a nearby church offers a crafts

program for " Down syndrome kids. " " That's not me, " Holden

interjects. Kime listens politely as the woman speaks. After the

woman leaves, Kime turns to Holden. " You're a person with a

disability, " she says. " I know, " Holden says. " You're a person

first. Remember that. "

After lunch, as the Green 2 bus rumbles past the Metro lot, signs of

weariness are evident among instructors and students. Holden, her

blond hair pressed against the bus window, watches the scenery go by

as they head back to campus. Her lips move as she begins muttering

something to herself. Suddenly, she looks up.

" Imagination, " she says. She explains that she was daydreaming.

" The Three Musketeers wanted to see me, " she says.

[Guest guest]

Wow!  In one average-length article, we have an overview of adults with DS

outliving their parents, special needs trusts, the national wait list problems,

a sample of an adult shopping in the community with the independent living

instructor, and the prejudices displayed by adults in the community.  Amazing to

see so much territory covered.

-Gail

From: Laurie Jerue <jeruefamily@...>

Subject: Washington Post article on Down Syndrome & life expectancy

IPADDUnite

Date: Tuesday, November 11, 2008, 7:36 AM

Expecting Longer Lives With Greater Risk, Reward

Down Syndrome Generation First to Outlive Parents

By Fredrick Kunkle

Washington Post Staff Writer

Monday, November 10, 2008; B01

Like many people her age, Holden wants to be on her own.

But for the 20-year-old Springfield woman, crossing streets can be

frightening. Keeping track of money is difficult. And fending for

herself is challenging at times for a person who loves to read but

has difficulty with novels above a fifth-grade level.

[snip]