Hard journey for Developmentally Disabled
This article originally appeared in The Oakland Tribune on
August 1, 2001
By Kristin Bender
ALAMEDA -- Fifty
years ago, adults with developmental disabilities had few choices aside from
state hospitals that left them to while away their days in front of a window or
Their quality of
life has certainly improved as adults with special needs are increasingly
learning how to live independently, manage money, stay healthy, cook, land a job
and build relationships.
But despite those
improvements, people like 31 year-old Edward Kohl often remain on the fringes of
social interaction -- misunderstood and sometimes unable to communicate.
The move toward
independent living is still new and developmentally disabled adult Americans
continue to lag far behind others in graduation rates, employment, suitable
housing, computer use and fitting social activities.
"It's a world
of difference (from 20 years ago) and a ways to go," said Edward's mother
Gretchen Kohl, a 54-year-old single parent who since 1980 has adopted and raised
seven children with special needs. "I think one difference nowadays is we
are looking at what they can do as opposed to what they can't do."
Edward likes his
job busing tables at The Cheese Steak Shop near Lake Merritt. He takes two buses
from his home in Alameda to get there and in six years has had pay increases to
only slightly higher than minimum wage.
Most people would
balk at the thought of holding such a position for so long, but for Edward it's
practically the only chance he gets to interact with people. Being
developmentally disabled has made it difficult for Edward to make friends
outside of his work place.
Edward said he has
"nice friends" at the shop, but "outside (of work) it's harder to
make friends." Edward is a bit shy, but is friendly and smiles a lot. He
has a pleasant, sort of nervous laugh and a mild-mannered demeanor.
niceness, "Edward has been invited to a social activity one time in the
last six years," said Kohl. "Because of his speech, he has a hard time
getting acquainted with people. The speech masks what he can do."
Kohl said that
people tend to assume that just because Edward has very bad speech, he is
unintelligent. But Edward has actually completed some college courses.
A recent study by
the National Organization on Disability found that since the passage of the
Americans with Disabilities Act more than a decade ago, fewer than one-third of
Americans with developmental disabilities between the ages of 18 and 64 are
working full or part-time.
percent live on household incomes of less than $15,000. Comparatively, only 10
percent of the non-developmentally disabled population lives on that amount of
But there is hope
Experts say that
reaching out to developmentally disabled teens as they leave high school and
ponder what to do next, is one key to improving their lives, productivity and
transition programs for (young adults) is so important because when they are out
of high school it's easy for (them) to fall through the cracks and not live as
independently as possible," said parent Lynanne Jacob, whose 20-year-old
daughter Erica has severe epilepsy but is headed to College of Alameda in the
A lack of
independence can sometimes be traced to the way school districts relegate
students to jobs that don't incorporate their interests, passions or dreams.
doing what we need to do right now," said Vivian Lura, director of Oakland
school's Programs for Exceptional Children. "There is not a hook there for
Oakland will tackle
the issue with a new program that allows developmentally disabled students to
follow their interests and shadow a mentor -- be it a computer scientist or
"It may be a
rude awakening for some kids but that is OK, that is part of learning,"
Lura said. "You will get kids who really stop and start thinking about the
What's more, new
attitudes, specialized programs and an increased level of caring is giving hope
to young people who leave the public school systems with thoughts of carving out
a normal life. More and more, the idea isn't just to get developmentally
disabled people through the day, but to help them find a good job, a nice home,
an active social life and close personal relationships.
individuals with developmental disabilities make big and small gains one person
at a time," said John Rodriguez, the director of older adult services at
the Regional Center of the East Bay.
Over 22 and
Since 1976, federal
law has mandated that public schools provide special education programs for
students up to age 22. But because there aren't laws mandating education for
those over age 22, opportunities can be limited. "There are never enough
opportunities for those with special needs," said Margaret Gannon, an aid
who cares for 20-year-old Erica. "These are the chosen few, really,"
she added pointing to an Alameda-based transition class in the north area
Special Education Local Plan Area (SELPA), that includes Berkeley, Piedmont,
Albany, Emeryville and Alameda.
In that class,
students learn cooking, money management, even self defense.
"There are so
many who are out there who have nothing, programs like these should be available
to everyone," she said.
teacher Christin Cooper said she sees a lack of services for adults with
mid-range disabilities. Students in her class range from having severe to mild
disabilities. One girl can't speak at all. One can recite his favorite country
singers without missing a beat. Others hold down jobs at restaurants and stores.
Erica is heading off to a special program at College of Alameda.
those types of programs, but wants to see more for the adult set.
turn 22, there aren't a lot of good programs that a lot of people consider to be
progressive, that are community based and work-oriented," Cooper said.
"There are places where they can sit at a table and stuff envelopes, but
all my students are beyond that."
But there are
programs that are working. Programs that are folding those with special needs
into the workplace, the gyms, the social venues, and giving them the boosts they
need to succeed.
In the East Bay,
Choices and the Regional Center of the East Bay work hand-in-hand to launch
people into jobs and independent living. Choices carves out jobs, matches
employees and employers and helps with training, support and job coaching.
"We meet with
the individual and try and get a sense for what their passions are, what they
want to do with their lives," said Choices program director Tina Flower.
work at Sears, Old Navy, Trader Joe's and in coffee shops and eateries. They are
often an asset to the workplace, bringing much-needed diversity, increasing
productivity and displaying a strong work ethic.
"They can pick
up a lot of the tasks that are time-consuming and monotonous for the other
employees," Flower said. "A lot of times they really have a strong
work ethic. It's taken them a long time to get the job so they don't call in
sick, miss work. They are often around for a long time."
But not all
employers jump at the chance to hire someone with special needs.
easily get 10 'No's' for every Yes.' Though it's rare that we run up against an
employer who is abrupt and rude, it does happen," Flower said.
"Sometimes it's hard to determine how much of (not hiring) has to do with
societal barriers and stereotypes and how much of it has to do with budgetary
standard answers for not hiring developmentally disabled people. "They say,
'We've tried that and it doesn't work," Flower said.
But people like
Kohl know it can work. She decided on adoption after working with
developmentally disabled employees at her government job.
"I never ever
considered not being a parent and I was getting into my 30s and always wanted a
family," said Kohl, who was single at the time, but now has a boyfriend who
assists with the brood, ages 16 to 31. "I knew I wasn't going to get a
healthy white infant. I got to know disabled people because I had them working
The same work ethic
that Kohl saw in her employees she sees in her own children. Edward, for
instance, doesn't have plans on leaving his job anytime soon.
"He shows up
every day, he hasn't been out because (he was arrested) or something, and he
hasn't moved upward or on to something else. They've got a reliable, but
low-level person," she said.
But even when
people with developmental disabilities get on the payroll, they are sometimes
ostracized from the social interactions and excursions that accompany a job.
co-workers don't socialize with him (and) that's typical," Kohl said.
"He's in a mainstream situation, but he is not really accepted by his
co-workers. They don't go out after work."
Because of this,
Edward's world can get very lonely. Kohl is hoping that with the help of some
programs for the developmentally disabled, Edward will get a chance to make
friends and develop a social life.
There are a lot of
things he would like to do such as going to a concert, Edward said. But because
of his mild cerebral palsy, he is not allowed to have a driver's license, which
limits his ability to get around.
"He can't just
hop on the bus and go somewhere spontaneously," said Kohl. For Edward,
negotiating a route on a city bus is difficult.
developmentally disabled is still one of the toughest barriers to improving
their quality of life, experts said.
"It isn't just
the (disabled) person who has limited skills, our community has limited skills
in making the connections," said Michael Williams, executive director of
United Cerebral Palsy of the Golden Gate.
What can be
Golden Rule, treat others as you would wish to be treated," Rodriguez said.
"Don't make biased assumptions regarding people with developmental
disabilities." There are plenty of opportunities to make acquaintances and
friends. Rodriguez said his center serves nearly four times more clients than 25
Still, he added,
people often fear dealing with the unknown.
"If you have
not interacted directly with a person with developmental disabilities, you may
be unsure how to act. The answer is, act the same as you would with anyone else.
Avoid judging people solely on their diagnosis or disability. Get to know
someone well before making any judgments," he said. "Treat everyone
with dignity and respect."
say, is needed everywhere, especially in the criminal justice system. Because
statistics show that 80 percent of people with disabilities have been or will be
victim of a crime, some police departments, including San Francisco, train their
officers on how to effectively speak to and question those with disabilities.
Moreover, the state
Department of Mental Health earlier this month announced sizable grants to
several large California counties to implement the first comprehensive state
program in the nation to address the high rate of crime against people with
The purpose of the
program is to improve the reporting, investigation and prosecution of crimes
against persons with disabilities. Michael Williams emphasized that police
training is essential at the local level.
have been more about not getting how they communicate," he said.
"Someone may be looking insolent when really they don't know how to answer
a (police) question."