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 television set.

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.

Despite his 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.

Additionally, 29 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 money.

New hope

But there is hope for change.

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 outlooks.

"Setting up 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 fall.

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.

"We're not 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 (the) kid."

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 banker.

"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 real world."

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.

"Every day 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 struggling

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.

Special education 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.

Cooper applauds those types of programs, but wants to see more for the adult set.

"Once they 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."

Folding in workplace needs

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.

Choices clients 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.

"You can 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 constraints."

Employers have 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 for me."

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.

"(Edward's) 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.

Barriers to social inclusion

"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.

Excluding the 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 done?

"Follow the 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 years go.

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."

Respect, advocates 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 disabilities.

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.

"(Problems) 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."