People with disabilities face uncertain path to "real" jobs

Aleta Hursh is 31 years old but has never held what most would consider a real job.

Born with cerebral palsy, the Kirkland woman can't talk. Her limbs jerk involuntarily, so she can't hold heavy or fragile objects. Two days a week, she sorts white paper from colored at a recycling center known as a sheltered workshop, where people with disabilities can get a taste of the working life in a supportive setting.

The job is well beneath Hursh's mental abilities. But like many people with serious disabilities, she hasn't had an opportunity to do much more.

Once viewed as progressive, sheltered workshops are now seen by some as outmoded, places where people with disabilities are segregated from society and relegated to lives of stagnation. The pay is low, averaging just $1.82 an hour, and the challenges are few. Some question whether people are really working or just killing time, and whether the workshops are just another example of discrimination.

Washington is the first state to adopt a revolutionary policy aimed at changing that.

The Working Age Adult Policy, which took effect last year, aims to transform the lives of thousands of people with disabilities. It requires adults who receive services funded by the state Division of Developmental Disabilities to be on a "pathway to employment," or have a job out in the community that pays a living wage.

"This is the next great civil-rights movement in our country," said Chris Brandt, chief executive of Issaquah-based AtWork!, a nonprofit that serves people with disabilities.

Other states are looking to Washington for advice, said Ray Jensen, director of the King County Developmental Disabilities Division. "Other states have it as a goal or a value statement, but we're the only state that's actually put it into policy."

While good jobs and living wages can hardly be criticized, the policy hasn't been universally embraced. Because the policy has placed a priority on work, some popular programs have been cut back. These programs provided activities, but they also offered respite for families who care for loved ones with disabilities, which can be just as important. Then there's the looming question: What about those who are simply too disabled to comply?

Hursh is wary herself. She pointed to a word on a board she uses to communicate.

"Scared."

"Real" jobs

On paper, the new policy seems simple. It requires organizations such as AtWork! to submit a written plan describing the steps each client will take to get a job — the individual's "pathway to employment." The organizations, which receive government funding, provide services to move clients along that path.

What counts as a "pathway" isn't defined. It could involve teaching the client a specific skill, training him to get to work on time, or teaching him how to ride the bus.

As for the jobs themselves, Linda Rolfe, director of the state Division of Developmental Disabilities, said there is one key requirement: that they be real.

"I don't want them shuffling bolts from one cabinet to another," she said.

Clients who refuse to at least try to get a job risk losing a lot of their government benefits. But there's no deadline to find a job, and officials recognize it might take years for some people.

When the client is successful, the employer, not the government, pays the worker's salary. Some say the policy could save money in the long run by getting people into the work force and off government programs. But the impetus was just as much philosophical.

"I argued for it because I want people to be valued in their community," Rolfe said.

For AtWork!, which serves more than 230 clients, the new policy came at a time of uncertainty. For the three decades that it has been involved in commercial enterprises, the nonprofit has survived on a combination of donations, government funds and contracts with private businesses that needed light assembly, packaging or envelope stuffing. But over the past few years, that work has dwindled, either because of the Internet or because businesses were sending the work overseas.

The slowdown, along with the new policy, led AtWork! to take a hard look at itself.

Brandt said the organization saw that people in the workshops weren't always progressing, that some workers were earning as little as $5 a month, and that many people had stagnated at the same job for years, if not decades.

"When your goal is to help people be independent and productive, that isn't cutting it," she said.

The agency decided it was time to change. In the past year, AtWork! has closed two of its three sheltered workshops. Now all workshop clients, including Hursh, are consolidated in the Issaquah recycling center, where their working hours have been reduced.

A loss of options?

Not everyone is happy about the new state policy.

At a recent support-group meeting in Bellevue, parents of adults and teens with serious disabilities passed around a letter from AtWork! describing the changes. They also discussed cuts in other programs.

As a result of the new policy, for example, a program called Community Access — which used to take adults with disabilities on outings — is now limited to people 62 and older.

The Working Age Adult Policy hasn't given people with disabilities more options, these parents complained — it's given them fewer. Some parents fear they may have to quit their jobs so they can care for adult children whose programs have been reduced.

Some have sons and daughters who can't talk and have no alternate means of communication. One has a daughter who is blind, autistic, developmentally disabled and has seizures. Others said their adult children couldn't understand what a paycheck was, much less appreciate a "living wage."

Parent Karen McNerney said her daughter is 22 but has the abilities of a 2-year-old. She's nonverbal and has to wear a protective helmet and arm restraints because she regularly hits herself. Recently, McNerney was instructed to connect her daughter with an agency to begin the job search.

"They told me this with a straight face," she said, explaining that her daughter would need one, if not two, job coaches with her at all times — if she could even focus on work instead of self-harm.

For most of these parents, a job seemed ridiculous.

"If we can get her toilet-trained, we'll be doing good," one mother said.

Many of them believe their children are too disabled to work. Yet they feel pressured.

The attitude, said parent Ron Ralph, is "if you aren't on board, you aren't recognizing the potential of your child. It's almost messianic."

Jensen, the King County official, said he understands the concerns.

"I'm not there with them 24 hours a day and the emotional side of that," he said. "But the worst thing you can do by giving them a chance is it doesn't work out. If you don't give them a chance you'll never know. Nor will they."

Searching for ideas

Hursh took her first step on the path to employment earlier this summer, when a group of supporters, including her father, the manager of her group home and a job coach from AtWork!, met with employment consultants to talk about job possibilities.

They began with a discussion of her work history, loosely defined. She took out the trash years ago at school, her father said. She cleans her room, the group-home manager said. She did a little volunteer work delivering gifts at a hospital, the job coach said. And then there's the paper-sorting.

Hursh's strengths came next: She is observant, has a good memory, and is persistent and creative, the group agreed. She's also compassionate to the point of being an advocate for friends who need help.

Then came the hard part: the job ideas. How about working at the airport with the Transportation Security Administration, one person suggested. Or offering food samples at Costco? Or delivering interoffice mail?

The consultants have learned to be creative. They and others shared stories about the seriously disabled man who got a job at a petting zoo collecting eggs and watering the plants. And the man who got a job sweeping up at a factory — something other employees didn't like to do — that helped reduce injuries caused by slipping on messy floors. And the woman hired by a pretzel maker to hand out free samples from her wheelchair.

But by the end of the meeting, the group seemed no closer to finding Hursh a job — which shows why this is so hard.

She can't feed herself and must rely on public transportation, so practically speaking, she can work only before or after lunch, not both. Because of her involuntary movements, she can be slow and sometimes breaks things. She's also worried about working without the help she gets at the workshop.

At the end of the session, she pointed again to a word: "Scared."

Maureen O'Hagan: 206-464-2562 or mohagan@seattletimes.com