Sunridge Ranch

The exterior of Sunridge Ranch, a center for adults with autism in Badger Pocket.

When a child with autism becomes an adult, families face a new set of challenges.

The puzzle is one that can involve several community agencies and entail questions about funding, caregivers, activities, employment and more. Each family’s situation is unique, and presents its own set of issues.

What is autism

Autism is a complex, developmental disorder that affects how a person communicates with others and interacts with the world, according to the Autism Society. People with autism generally fall somewhere along a spectrum of behaviors, from mild to severe. Behaviors include delays in speaking, repetitive motions, avoidance of eye contact, fixations on people or objects, difficulty in relationships with others and limited ability to understand humor, sarcasm or make-believe.

Why 3.5 million Americans and 1 percent of the worldwide population develop autism is not known, but research has found it is related to abnormalities in brain structure or function. Theories of autism’s origin that are being investigated include genetics, medical problems and environmental factors.

While there’s no cure for autism, it can be treated by behavioral, educational, medical or sensory therapies. Treatment varies depending on the individual.

Support in Kittitas County

Michelle Williams is the coordinator of Parent to Parent, a statewide organization for parents who have children with disabilities that has local groups in most counties. The Kittitas County Parent to Parent group formed in 2001.

“We have several monthly support meetings,” Williams wrote in an email. “Most of the families who attend have children on the autism spectrum.”

Williams’ 18-year-old son, Gerik, has profound autism. Knowing there’s someone else who’s navigating through the system of getting appropriate education, finding good care providers and securing good medical care is a big help to families and caregivers.

“The strength is the fact that parents realize they’re not alone, that all of us are going through the same issues,” Williams said.

In a community like Ellensburg, the most important thing is finding natural supports. The Special Olympics is one of these supports, but there’s not much beyond that in Ellensburg.

“Our kids, in a wonderful way, take advantage of everything the city offers,” she said, “but we also have to find them and be able to supervise our children in typical activities. (For example,) just take T-ball. How does my son participate in something like that? Maybe he can’t, but we want our kids to be as much a part of our community as possible.”

When kids age out of the system

Williams said after her son Gerik graduates from Kittitas High School at age 21, whether he lives at home or in his own apartment, he will need 24-hour care. He will receive assistance from the state Developmental Disabilities Administration, or DDA, which is part of the state Department of Health and Human Services.

The DDA will work with Gerik and his parents on his job, personal and housing supports for when he graduates.

The public school system supports autistic and other special needs adults through age 21. DDA service for adults doesn’t start until age 21. If an autistic adult leaves school before age 21, it creates a gap in service leaving families and caregivers to handle things on their own, Williams said.

“We are lucky Gerik is a DDA client,” Williams wrote. “There are some supports, although limited, available through DDA to help him in his future. I worry about people who are not eligible for DDA. These people fall through the cracks.”

What’s available now

Deborah De La Fuente, the local manager for the DDA in Ellensburg, said the agency’s goal is to try to help people be as independent as possible. The agency works with multiple clients with disabilities, mostly with intellectual disabilities, she said, and their families.

“Support of families could include respite care, it could include medical costs or co-pays, or help to access recreational opportunities,” she said. “Things like that.”

There are no age limits with the DDA’s services, but the actual needs may change, which might mean taking the focus of school on to finding a living arrangement.

A case manager meets with clients or caregivers for a roughly two to three hour evaluation to determine what their needs are, their eligibility and what programs would make the best match, she said.

A lot of what the agency does is coordinate with other organizations to provide services — training, in-home care visits and other — and in Kittitas County, there are options.

“Luckily, we’re such a small community you just pick up the phone and call folks,” she said.

Building a vision

After autistic adults leave high school, state law says parents still are the primary caregivers for their son or daughter. Many autistic adults have jobs, volunteer work and participate other community activities, but remain at home.

Elmview, a private, nonprofit group in Ellensburg, provides residential and employment services to people with disabilities. One strength of the residential program is that it helps its people “be part of community, be integrated and included, and a build vision of themselves,” said executive director Bruce Tabb.

The residential side offers a range of services for independent living for people along the autism spectrum, from seeing that medicine is taken, going shopping to full time, 24/7 care.

The other side is employment advocacy.

“We support people at work, finding a job and keeping those jobs,” he said, citing one Elmview client who has worked at CWU for more than 20 years.

Most Elmview clients come through DDA, once they are deemed eligible for residential and employment services. Elmview also works with another state agency, the Division of Vocational Rehabilitation, and contracts with Kittitas County to provide ongoing services.

This year marks Elmview’s 50th anniversary and celebration planning in underway, Tabb said.

Information on accessing services is available by calling 509-925-6124 for vocational services and 509-925-6688 for residential services.

Entrust

Another group that helps autistic adults in Ellensburg gain and keep employment is Entrust Community Services, a community access center for adults with disabilities, which is based in Yakima.

Mark James, Entrust community relations director, said Entrust also provides life and independent living skills, with training about self-maintenance and conflict resolution.

“One of our strengths is being able to facilitate positive experiences with general population and people with disabilities,” James said.

Entrust acts as the primary advocate for their clients, making sure parents and caregivers are talking to the right people, getting access to what they need and retaining client employment.

Some of the industries where Entrust clients work are retail, janitorial, general services, food service, manufacturing, and some automotive and animal care work. One client in Yakima found work as an esthetician, he said.

James said there’s “misinformation and assumptions about what it mean to help or be around someone with a disability. A disability doesn’t mean you can’t or aren’t willing to do a job.”

Entrust’s programs are heavily tied to the government funding, from the state and Yakima and Kittitas counties.

“That can limit our ability to grow, be flexible, or get creative with best way to serve people with disabilities,” he said.

From the website, www.entrustcs.org, potential clients can find phone and service office addresses. The phone number in Ellensburg is 509-453-4756, extension 400.

Entrust offices accept walk-ins, and will help navigate programs, go through the intake process and begin the next steps with parents and caregivers.

What could be done differently

As far as what could be done better, policy-wise, De La Fuente admitted money tends to always be the bottom line.

Right now the agency is working on a new service waiver that will allow more people to qualify for medical support, respite care or other assistance.

“Our goal is just to continue seeking available resources and utilize them, and help support the most people possible,” she said.

Beyond that, she wishes there were more vocational or recreational opportunities for the people she works with, something that might be hampered by misperceptions about developmentally disabled people.

“People with disabilities are just like everybody else, they have the same emotions, goals,” she said.

Look around, she said, and you can find people with developmental disabilities living and working successfully all around the community.

“There are a lot of good things happening out there for people with disabilities,” she said.

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