Sam Lyss is an ideal employee. 

He never misses a day at work, has an eye for detail, loves what he does and is easy to train.

“He’s a whiz at mailings,” said his mother, Jane. “If you lay it out for him and show him one time, he watches you do it once and then just turns around and starts working.”

Then there’s his work ethic.

If you give him too much work, he actually won’t leave,” she said. “They have to take half of it and hide it.”

At the same time, life can sometimes be difficult.

That’s because Sam is autistic. The 24-year-old Nusach Hari B’nai Zion congregant is non-verbal but is able to communicate through various means, ranging from a pen and pencil to sign language to the use of an electronic device.

Sam maintains a very active social schedule including basketball, book clubs, art projects, floor hockey, bowling and dancing. He does volunteer work supported by a one-on-one job coach. On Thursdays, he can be found at the Brodsky Jewish Community Library doing data entry on archiving projects.

Like any parent, Jane Lyss wonders about the future. But for parents of autistic children those thoughts take on special concern. Despite his abilities, Sam cannot be left alone to take care of himself. Though good at tasks, he requires supervision and guidance to do many things most people take for granted, including looking out for his own safety crossing the street.

Those challenges loom large in childhood. But they get even bigger as time passes and as parents, initially able to create the secure environment and constant attention a child, or young person, with special needs or a mental illness requires, continues to age. Then the question hangs heavily: What will happen to an adult who still requires care after a parent can no longer provide it?

“We were at a meeting last week with probably 30 parents in a room,” Lyss said. “You go around the room and say ‘What’s your one fear?’ Everyone literally just said the same thing. ‘What’s going to happen to our young person in the future? Who’s going to take care of him?’”

Housing and services

In the Jewish community, those questions are no less important. Jane Lyss said some areas have found answers but in St. Louis it’s still a worry.

“Many communities have Jewish community-based supported living apartments,” she said. “It’s supported living but in the Jewish community. That’s a challenge for us. When we were in Florida, the Jewish Community Center on the campus has a dorm-type setting right there in the J, fully integrated. That’s what we’re missing here.”

Ideally, she’d love to see something of that nature right on the Millstone Campus.

“The few I’ve toured and seen, it’s just amazing, to be able to live with people your age and still have a kosher kitchen and observe the holidays,” she said.

One advantage of such a location would be easy access to the Jewish Community Center. The JCC does provide a number of services for adults with special needs. Molly Hoffman, special needs coordinator with the agency, points to the bi-monthly friendship group which has 30 to 50 participants who do everything from visiting the St. Louis Zoo to watching movies or playing board games. Meanwhile, a theater program puts on an annual show. There are also summer camp programs with one-on-one support, a “Teen Skills” pre-vocational program for 16 to 20-year-olds and strength training programs for both children and adults.

“That is one-on-one personal training that helps our participants with developmental disabilities to walk on the treadmill, to learn about health, to get their strength up,” Hoffman said. A lot of time we have people with physical disabilities as well and we work on striving toward whatever their goal is.”

The JCC’s programs serve people with Down syndrome, autism, cerebral palsy and other developmental and/or neurological issues.

“With kids the challenge is getting them help in school. When they are adults, they don’t have any place to go so it’s trying to get them jobs and trying to get them out in the community,” she said. “There’s also a difference in friendships. When they are kids, they want the inclusion experience. They want to meet people who don’t have disabilities.”

She said the JCC does a good job of meeting the needs in the community for both children and adults but familiar challenges remain. All programs charge a nominal fee; some, like the strength training, are $10 an hour.

“A huge issue is lack of funding and financial barriers we face. The people that come to the J also don’t have a huge salary to live on,” Hoffman said. “They don’t have a lot of money to spend on programs.”

Eighty percent unemployment

Mark Arens, executive vice president of MERS/Goodwill said that it isn’t just a place to live that’s the problem. It’s also about a place to work.

“Certainly, one of the biggest things facing individuals with developmental disabilities as far as being independent is employment,” he said. “We in the broader society get upset and concerned when the unemployment rate is 10 percent. For individuals with developmental disabilities … the unemployment rate is 80 percent.”

Fortunately, he said part of that problem is easily solved. As Sam Lyss demonstrates, many with developmental issues are well-suited to play a role in the work world, often with less absenteeism and greater enthusiasm. The challenge is getting human resource and hiring departments to understand that. 

The key, he said, is not to present it as charity but rather as something that will help a given organization.

“If we’re just saying give them a job because it is the right thing to do or it’s socially responsible or taking a philanthropic approach, that really just doesn’t work,” he said. “It will work with some but most employers are going to operate out of their company’s best interests. You have to be able to say, this person is the best choice for you because they are not going to leave you when the economy gets better. They are going to be the first ones to come in and the last to leave.”

Yet even getting to work can be a problem. Ashley Elliott of the St. Louis Office for Developmental Disability Resources said that it can also be expensive.

“It’s a challenge on getting transportation door-to-door if they don’t know how to take bus routes,” she said. “It basically needs to be a cab going directly to their destination.”

Wendy Sullivan, president of Life Skills, notes that, ironically, some of the challenges posed by caring for the population with special needs are the result of good news. Those with developmental disabilities are living longer than previously. Just a few decades ago, it was far less common for those with such conditions to outlive their parents. 

However, that’s created a need for infrastructure.

“The biggest issue for people with developmental disabilities as they age is that there really aren’t services available,” she said.

Those services actually aren’t that extraordinary or unusual either. She said her organization, which, like MERS/Goodwill, has Jewish roots, would like to see nursing home or day activity center providers step in to fill the gap.

“One thing is for the general public to realize is that people with developmental disabilities have the same needs that the rest of us have in terms of support as they get older,” she said. “Mobility, someone to check on them, different diet and medications.”

She agrees with Arens that, as far as jobs are concerned, the biggest hurdle with employers is the initial one. 

“Employers are usually very satisfied with the process but they might be reluctant in the beginning to try it,” she said.

Retention rates run over 90 percent after a year, she said.

Measuring success

Rabbi Susan Talve of Central Reform Congregation always knows when things are going well during services. She can tell by the sound of a laugh from the front row.

“We have a young man in our congregation I call our barometer,” she said. “He has severe disabilities but he has even more tremendous abilities.”

That “barometer” is Aaron Sorkin, who will turn 20 this summer. He has CHARGE Syndrome, a genetic disorder featuring multiple disabilities including being mostly deaf and blind as well as having developmental issues.

Talve notes that it is important in Judaism to understand that everyone can make a contribution to the whole.

“What the tradition teaches us is that every human being has infinite worth,” she said. “Everyone has a gift to bring to a community so a community that doesn’t make a place for people of all abilities is going to miss out on the gifts that everybody can bring.”

Aaron requires constant supervision, which his father, Steve Sorkin and wife, Jeane Vogel, work to provide.

“We know that somewhere down the road, it would probably be better for him to live somewhere else and get some experience living outside of the house,” said the 57-year-old Sorkin, administrative director of the St. Louis Rabbinical Association. “As any parent of a child with disabilities can tell you, it’s always a concern over what happens when we are not here down the road.”

The exact course of that road remains murky but, like other parents with special needs children, the Olivette couple has their own hopes regarding the issue. Sorkin looks at nearby Rainbow Village, a non-profit that provides housing for those with developmental disabilities. 

It’s one of the options that are out there but as with any other family, the future remains unknowable.

“No matter what he did educationally or developmentally or with a job or in any other way, he would know he is loved and that he would be happy,” he said. “I measure it by that.”