Just two weeks down the calendar loomed the day
Carol Patinkin had dreaded since her little boy was a
Avi was born with Williams Syndrome, a
rare genetic disorder that delays growth before and after birth.
Within days, they would celebrate his 22nd birthday.
For most young adults, turning 21 marks
the threshold of maturity. For those with special needs, 22 is the
door to adulthood.
"For kids with special needs, 22 is a
very significant birthday-and not in a positive way," says
Patinkin, 50, of Wilmette.
"The day before is the last day they
are entitled to services through the school system," she says. "The
next day you're done."
As parents of children with
disabilities struggle through the draining days of doctor's
appointments, advocating with the school district and managing
taxing behavior from breakfast to bedtime, the giant question marks
hover over the household like a silent fog shrouding the
What will happen when he grows up? What
will she do when I'm too old to take care of her? Will his brothers
and sisters take care of him? How will she ever learn to live and
work and love and play as a grown-up?
"You're never done as parent of a
special needs child. There's always uncertainty," says Jim Zils,
father of a 33-year-old son with microcephaly.
"The questions are just woven into the
fabric of our lives."
The Zils and other Chicago area parents
have found answers to those confounding questions. The most
important thing, they all agree, is to start looking for them
Jon Zils was on a waiting list for
Lambs Farm, an adult work and living program in Libertyville, when
he was 12. A year ago, when he was 32, Jon's name made its way to
the top of the list and he moved in.
"We knew it was going to happen
someday. We just didn't know what day that was going to be," says
Jon's father, Jim.
Lambs Farm is among an array of Chicago
area living and working options for adults with disabilities. Lambs
Farm is a non-profit organization that grew from a small pet shop
in Chicago in the early '60s to a 72-acre campus with a restaurant
and gift shop where more than 250 men and women live and work.
Jon works on a maintenance crew mowing
grass and setting up for events at the farm. He also works at the
local Jewel-Osco, where's he's been a bagger for 12 years. He goes
to dinner and dances with friends, plays bocce ball in Special
Olympics and takes classes in life skills.
Jon pays his own way at Lambs Farm
through his income and his Social Security Disability Insurance
Jim Zils says it's the best-case
scenario for his son.
"We are lucky. But it isn't all luck,"
Zils says. "We worked hard at it."
Zils saw his as a three-fold mission.
He wanted to see Jon shape a life with a work component, a social
life and a safe, stable place to live. Since the living piece was
going to take awhile, they focused on the other two.
Jon became a part of social groups
through the Special Recreation Association of Lake County and went
to life skills programs that helped him learn how to shop, cook and
There are lots of programs out there to
help young people move from school to work. We Grow Dreams
Greenhouse & Garden Center in West Chicago, for example, offers
jobs to people as young as 14 in growing plants, making crafts and
working in the garden and gift shop. There is no waiting list for
We Grow Dreams. There is a $150 per month tuition fee, but workers
earn about half that back in wages.
"The goal is not for people to grow up
and get a job in a nursery," says Laurie Staple, team program
manager. "It's to foster good social skills and work skills and
transition into other jobs in the community."
The Parents Alliance Employment Project
(PAEP), with offices in Lombard and Lisle, was launched in the
1980s by parents looking for work opportunities for their
youngsters with special needs. Many of its clients work in clerical
jobs. Others work in jobs ranging from restaurants and retail,
hospitality, warehouse, health care, janitorial, electronics,
entertainment and education.
PAEP is funded by the state Division of
Rehabilitative Services and is free to the families who use it.
Hiring people with disabilities makes
good business sense, says Becky White, business development
coordinator at PAEP.
"They tend to stay in jobs longer, they
are very hard working, they don't call in sick a lot," she says.
"It tends to rub off on other employees."
The Will-Grundy Center for Independent
Living pairs staff members with disabilities to help others learn
job, social and life skills transition services.
"Since most of our staff has
disabilities, the young people learn from adults with disabilities
who have succeeded," says Executive Director Pam Havens.
For Carol Patinkin and Avi, switching
focus from academics to work and life skills isn't easy. In high
school, Avi had an uncanny memory for history, geography and world
events. He is a gifted singer who routinely performs for an
audience of thousands.
"He can rock a room like nobody's
business," Patinkin says.
There's a part of her that wishes her
son, like those of her friends, was going to college instead of
into other career training.
"When it comes to giving up the
academic focus, most parents go kicking and screaming" she
Avi is in an adult program with Keshet
in Northbrook, where he helps deliver Meals on Wheels and takes
life skills and music classes. They are working through the red
tape to eventually get funding for him to get in a residential
program like the Keshet-sponsored Migdal Oaz house in West Rogers
Park. Migdal Oaz has rooms for six men and there are 75 on its
Abbie Weisberg, executive director at
Keshet, isn't very proud of her state's track record when it comes
to funding programs for adults with disabilities. Illinois ranks
51st when it comes to providing funding for adults to live in
community-integrated houses of up to six, she says. Community homes
cost no more than a more institutional setting.
To help them through the metamorphosis
from youth to adulthood, the Patinkins are working with Sherri
Schneider of Family Benefits Solutions in Buffalo Grove. Schneider,
the mother of a son with special needs, for more than 30 years has
worked with about 660 families to help them get benefits they need,
such as Social Security Disability Insurance, Medicare and Medicaid
She boasts she knows 32 ways to get a
hospital bill paid. What doesn't work for some may work for
"Our kids do not come with manuals,"
she says. "I help with the things that keep parents up at night.
What will happen to them when I pass away? How can I keep as much
of our money as we can for the things we really need to pay
Patinkin took hope when she heard about
the Zils' happy story. It turns out, the two families learned they
have something in common besides a son with special needs. The Zils
worked with Schneider, too.
A timeline for families with special needs
• If, at birth, your infant remains in the hospital for
some time, apply for Supplemental Security Income. As long as the
child remains in the hospital, parents' income and assets will not
count. To apply, call (800) 772-1213. If your child has no or
limited health insurance, think about applying for Illinois
•Work on special needs
estate planning including wills, special needs trust, powers of
attorney and change of beneficiary.
•From birth to age 3, have
your child evaluated for early intervention programs. To locate the
agency for your area, call (217) 782-1981.
• Do not open any assets in
your child's name. Let others know this as well.
• At age 3, seek as much
help from the school district as possible. You may need to hire a
school advocate or attorney to get what your child
• If your child has the
diagnosis of developmental disability or on the autism spectrum,
you must do a PUNS (Prioritization of Urgency of Need for
Services), Illinois' waiting list for services. Call your
Independent Service Coordination Agency (ISC) at (800) 588-7002 or
(888) DDPLANS. You can request funding respite, children's waiver,
Home Base Service waiver, job coaches and group
• To find programs that do
not consider parents' income and assets, call Case Management under
Division of Specialized Care for Children (773)
•Attend as many conferences
as you can to obtain information for your child's future. The
schools have presentations and The ARC of Illinois lists many on
its Web site. Find support from fellow parents at
• When your child turns 14
½, the school should be starting transition planning. Make sure
your child's IEP reflects realistic goals.
• At 18 years old: Apply
for SSI, apply for Medicaid, consider the need for guardianship vs.
powers of attorney, get a school power of attorney executed and
given to the school, get an Illinois Identification Card, look into
the RTA's Reduced Fare Permit and ADA Paratransit Service, register
them to vote if applicable and resister males for the Selective
•In Illinois, special
education can end the day before your child turns 22. One year
before this, do your due diligence to look at day and residential
•Prepare and update a "Letter of Intent" about
your child: likes, dislikes, current doctors, doctors to never see
again, daily routines, what frustrates them, how to handle a
"melt-down." Google "Letter of Intent" to see many different
Source: Sherri Schneider, Family Benefits Solutions
Robyn Monaghan is a long-time journalist and mom living in
Robyn Monaghan is a mother and long-time journalist.
See more of Robyn's stories here.
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