March 26, 1999   9 Nisan 5759

A Special Community

Rachel Pomerance Special to the Jewish Times

What do you want to do when you grow up?"
Eighteen-year-old Robbie Grollman's lips part into a wide smile as he
answers. "I'd like to go play for the Atlanta Hawks or the Chicago Bulls,"
or "go into business with Sammy or Ted Turner or for myself." Sammy is
Sammy Rosenberg, program coordinator for the Developmental Disabilities
Department of the Atlanta Jewish Community Center.
With every question about his future, Robbie delightedly churns out the
bright possibilities.
But it wasn't always that way for a kid with Fragile X syndrome, a genetic
chromosomal disorder, marvels his father, Dr. Robert Grollman. "When he was
real young, there was nothing available, but it has just mushroomed," the
Atlanta dentist says.
Robbie, a student at Roswell High School, is involved in social clubs at
the AJCC and the YMCA, and counts bowling, baseball, basketball, tennis and
soccer among his passions.
"He has more activities than his parents," his father chuckles.
The words "developmental disabilities" weren't used 20 years ago to
describe the broad spectrum of cognitive and physical impairments that can
range from a mild learning disability to severe autism. Even the language
this newspaper employed to cover the subject five and 10 years ago is no
longer "politically correct."
A new sensitivity mirrors the progress that's been seen by this community,
as evidenced by the sheer volume and variety of activities and programs now
in place for the disabled.
March was designated the first Jewish Disability Awareness Month by the
Coordinated Network of Services for Persons with Disabilities, managed by
Jewish Family and Career Services (JF&CS).
The month was highlighted by an educational conference, the sixth annual
Larry Bregman Educational Series - which drew 400 people, a 25 percent
increase over last year - and featured a Saturday night dance along with a
day of learning.
All together, the month's programs have reinforced the message that living
with a developmental disability does not mean living life at the margins.

Knocking at the door
When Robyn Berger's daughter, Lori, was born with Down Syndrome in 1970,
the Jewish community had nothing to offer them. Slowly, a handful of
programs - a chapter of the B'nai Brith Youth Organization (BBYO), a small
respite home to give families a break, two JCC recreational and cultural
programs for adults, and a Sunday school class - provided a glimmer of
hope. But Berger wasn't alone in her frustration over the dearth of
services.
"I wanted to see the Jewish community offer the same full range of
activities for Lori and her friends that were afforded my other children,"
she recalls.
Berger led the vanguard of concerned parents, who made real progress in
1988. That was when the Federation held six forums at synagogues around
Atlanta as part of its Year 2000 Survey to hear the needs of the entire
Jewish community and respond to them by the year 2000. One of the most
vocal groups at those forums, according to Berger, were families of the
developmentally disabled.
Community leaders were "shocked" by the outpouring from the families, says
Berger, thinking back to '88. "They had no idea."
If 1.8 percent of the population is estimated to have developmental
disabilities, the Jewish community of Atlanta, at about 80,000, includes
1,440 who are developmentally disabled.
"Once the Federation opened the door, that's when people started knocking,"
she adds. And that's when the ball started rolling.
The Federation set up a committee for the developmentally disabled as part
of their Year 2000 planning group and hired Webb Spraetz to chart a
blueprint for the future.
"One of the most invigorating things I've ever done," said Spraetz of being
handed $60,000, a blank piece of paper, and the opportunity to lay the
seeds for serving the Jewish disabled population. Under Spraetz, Berger was
the first chair of the Federation's developmental disability committee. She
currently serves as the assistant director for the DeKalb Developmental
Disabilities Council.
Spraetz, whose own 30-year-old daughter, Teri, is developmentally disabled,
has already achieved and surpassed the goals he set for the year 2000. As
supervisor of Developmental Disabilities for JF&CS, Spraetz heads what is
called the Coordinated Network of Services for Persons with Disabilities,
known as the Coordinated Network.
By pooling the resources and services of JF&CS, Jewish Educational
Services, and the AJCC, the network can better meet a wide range of needs,
from information and referral to transportation, job placement and
training, respite care, sports teams and summer camps. It also offers a
host of educational programs, including a special class at Tichon Atlanta,
the community-wide Jewish supplemental high school.
"It's more cost-effective to collaborate because it avoids duplication of
programs and it's a greater opportunity to help people by working with more
than one agency," says Spraetz.
The network, which is eight years old, has been such a success that Spraetz
and other members have been asked to speak to other communities, Jewish and
non-Jewish alike, to describe the formula for their non-competitive and
highly effective inter-agency alliance. Sixty percent of its 5,000 clients
are Jewish.
There was no developmental disability program at JF&CS when Gary Miller,
the agency's executive director, assumed his position in 1991. Now, nearly
$1 million of its $5.6 million budget is devoted to developmental
disabilities. Miller predicts the agency will double its capacity to serve
the disabled in two to three years.
"The demand is there," says Miller, "and we just need to supply the
resources to meet the demand."
For her part, Robyn Berger's daughter, Lori, now 28, represents people with
disabilities on the board of directors at the Atlanta Alliance for
Developmental Disabilities (AADD) and is frequently asked to speak at
schools, businesses and conferences. She also works full time at the Druid
Hills Child Development Center and is vice president of Very Special
People, a social club for adults at the JCC.

Mission: independence
Success has been sweet, but each breakthrough has only enlightened
providers about how many people are still in need of services. Perhaps the
greatest challenge is the effort to provide independent living - the
ultimate goal of most of these programs.
Susan Wheeler, 42, and Terri Roth, 44, are enjoying independence in spite
of their developmental disabilities. They recieve public assistance, and a
caregiver comes to their apartment for about 24 hours a week to help them
with things like grocery shopping and money management. But the roommates
and best friends otherwise are self-sufficient. They prepare their food and
clean house and they go to work.
When they're not at their respective Pizza Hut jobs - Terri works delivery
and Sue washes dishes - they are looking after each other.
Sitting together at the Bregman Educational series, Susan leans down to put
their belongings under her seat while Terri fluffs up Susan's jacket. "She
makes me happy," says Susan. "I like her. I kiss her on the cheek," she
motions. "She's the first friend I had." They moved in together after
meeting at a disability program about five years ago. Before that, Terri
lived in a group home and Susan lived with her parents.
"You get tired of living at home," Susan smiles.
But as Robyn Berger explains, the cost of independent living for people
with developmental disabilities is a king's ransom. She estimates it to be
as much as $4,500 per month. "It's like sending your kids to college for
the rest of their lives," she says.
That's why Eric Jacobson, executive director of the Governor's Council on
Developmental Disabilities, has been spearheading a statewide collaborative
campaign called "Unlock the Waiting List." It is designed to pressure the
Georgia Legislature to create more funding for community-based residences
and vocational opportunities for people with disabilities.
Currently, Medicaid-funded programs help people who can prove they need
institutional care. But people can put their names on a waiting list to
obtain waivers that will allow them to receive services in the community
rather than in an institution. There are 13,000 names on that waiting list.

Jacobson says $60 million is needed to fund the people on the waiting list.
There are signs of promise as the state has begun closing institutions and
transferring that money to the community. Out of seven institutions in the
state of Georgia, three have closed in the past four years, and another
closing is underway. Last year's closing of Brook Run in Dunwoody was proof
of money successfully following the individual from the institution to the
community. Enough money was saved with that closing to fund twice as many
people in the community.
"I think there is a general movement by the state to put more money into
the community and allow people to have more input and choice in the
services they provide," says Jacobson. Having worked with the Federation
for seven years before joining the Governor's Council, he shares optimism
about progress in the Jewish community. "When I was at the Federation, we
were just beginning to look at how to provide services in a community, and
now the Coordinated Network is a model for providing community-based
services."
   
The challenges within
And Moses said unto the Lord: "Oh Lord, I am not a man of words, neither in
the past, nor since hast Thou spoken unto thy servant; for I am slow of
speech, and of a slow tongue." (Exodus 4:10)

That's one of several biblical soundbytes that the Accessible Congregations
Campaign is submitting to rabbis around the country. The Campaign seeks the
commitment of 2,000 congregations by the year 2000 to pledge that people
with disabilities are valued individuals created in God's image, to remove
barriers that exclude people with disabilities, and to encourage people
with disabilities to use their gifts in worship.
Shelley Kaplan, chairperson of the Accessibility Committee for the United
Synagogue of Conservative Judaism in Atlanta, says, "Inclusion means
everyone can worship." Kaplan notes that some synagogues have already
demonstrated a commitment to the disabled, and that most newer ones have
eliminated physical barriers because of the mandate to do so by the
Americans with Disabilities Act six years ago. She cites Atlanta's Ahavath
Achim Synagogue as having made a commitment to the disabled with a
hydraulic lift to the bimah, large-print siddurim and assisted listening
devices.
But Kaplan believes synagogues are far from accessible for people with
disabilities of all kinds. "It's one thing," she says, "to remove a
physical barrier. ... it's another to change our atittudes and recognize
that all people have gifts and talents to share with their congregations.
It's our own beliefs and stereotypes that determine what someone with a
developmental disability can or can't do and that's the hardest thing to
change."
For now, eight of the 22 Atlanta synagogues targeted by the campaign have
returned the initial survey discussing accessibility issues.
Linda Zimmerman, special needs director for Jewish Educational Services, is
thankful there is increased awareness and acceptance in the Jewish
community about developmental disabilities. But she believes there are
certain struggles the community still must overcome - specifically, the
stigma associated with disabilities. "We're the people of the book in the
Jewish community," she says. "And some parents are very uncomfortable
admitting any problems with their child, that he or she isn't 'perfect.' "

Elise Prezant, employment coordinator with JF&CS, agrees that an open mind
is critical for success. "Some parents frown upon their child serving at
Burger King or working a dishwasher," she says, "but these are
opportunities that offer skills and allow for a future." She adds, "Like
all of us, you have to start somewhere, particularly if other businesses
are still hesitant to hire people with disabilities."

The community at large
One of the greatest assets for the community at large has been the Marcus
Institute. Made possible through the generosity of Home Depot mogul Bernard
Marcus, the 9-year-old, non-sectarian facility is one of its kind in the
state of Georgia and one of only a prestigious few in the country. In
partnerships with the Centers for Disease Control and Emory Medical school
and now Kennedy-Krieger, a similar facility in Baltimore, the Institute
employs a unique interdisciplinary approach to patients that combines
pediatrics, therapy, and cutting-edge research to treat all aspects of
brain disorders. The institute has parents serving on staff and includes
the family in its treatment, instructing them how to understand the needs
of their child.
"Every approach is different because every child and every family situation
is different," says Betty Sunshine, a speech pathologist at the Marcus
Institute. "It becomes our goal to determine which professionals need to be
involved and what needs to be done. ... We say we'll stand on our head and
spit nickels if that's what works!"
Metro Atlanta's public school systems also have been instrumental in
expanding opportunities for people with developmental disabilities.
Janice Nodvin is co-president of the Down Syndrome Association of Atlanta
and chairperson of the DeKalb Developmental Disabilities Council. She says
public schools have come a long way, but she's quick to note that those
changes are a direct result of active parents demanding services for their
family members. Her son, Evan, is in special ed at Chamblee High School,
where he spends half the day in academic classes and the other half in
hands-on job training.
"Whereas the public school systems used to train students to become
job-ready through workshops, they have now realized that students and
potential employers alike can benefit from having on-the-job training out
in the community," she says.
Through the DeKalb County school systems, Evan spends two days a week in
housekeeping at the Marriott, one day a week cataloging books at the
Dunwoody library, and one day a week as an office aide in the Ravinia's
Human Resources Department.
"That's his work-study program, and he loves it!" says Nodvin, who explains
that her son goes to the job sites with other students and his teacher acts
as the job coach.
As a parent advocate, Nodvin advises parents to be active in all areas of
their child's life. "It's important not to compartmentalize the child's
education or recreation, but to look at the whole child and fight for all
parts of his life."
Every advance for people with developmental disabilities is won by pushing
the envelope to create opportunities that were once thought impossible. Dan
Evatt, recreational therapist for the Atlanta Association for Developmental
Disabilities, captures the pioneering spirit of the community. "A common
question I get from parents is 'What can my kid do?' I answer, 'Whatever
they want to do.' "
Whether it's independent living or organized adult trips to Israel, every
accomplishment can be traced to someone like Evatt believing that people
with disabilities are like everyone else, want the same things as everyone
else, and are entitled to the same things as everyone else, if only at a
different pace.
At one of the JCC's recent basketball games, a kid with Down syndrome yells
to parents and friends that he made a basket. A mother travels the court,
manuevering her son in a wheelchair so that he can be part of the game. And
with all the kids in uniform, patiently passing the ball to each other, it
becomes clear that life is beautiful and anything is possible.

For more information...
The starting point for finding a way into the various programs for people
with developmental disabilities is the Coordinated Network of Services for
Persons with Disabilities, managed by Jewish Career and Family Services
(JF&CS). For more information, call JF&CS at 770-677-9341.