Falling through the cracks: The uncertain future of adults with autism
- Admin
- 19 hours ago
- 6 min read
Guam services leave much to be desired, parents say
By Jayvee Vallejera
Frustrations. Negative experiences. Lack of adequate support. So many requirements just to be able to get job training.
These are just some of the obstacles Guam parents face when looking for support services for their children who are on the autism spectrum, said Josephine Blas, president of Autism Community Together Guam and a mother of a teenager with autism.
The financial and emotional challenges parents face, along with the difficulties individuals on the spectrum already experience, unfold in a scenario where affected families are left adrift, uncertain about what to do when their children reach adulthood and need to find a job.
The Guam government agency that’s supposed to help them—the Division of Vocational Rehabilitation under the Department of Integrated Services for Individuals with Disabilities—is not doing enough, Blas said, with many parents complaining about having to jump through so many hoops just to get the help they need.
Michelle L.C. Perez, DISID director, acknowledges that there is always room for improvement and the department has, in fact, increased the number of DVR counselors to ease access to services and reduce barriers.
“We take the concerns of parents and families seriously,” she said. “Our goal is to ensure that all eligible individuals, including those on the autism spectrum, receive the guidance and support needed to achieve employment outcomes.”
Those on the spectrum typically first get into the system through the Guam Department of Education’s special education program, but Blas said this is just a catchall for children facing significant learning disabilities; there’s really nothing specifically geared for those on the autism spectrum.
This is what worries parents the most: What happens to those on the spectrum once they cut the GDOE apron strings? What happens to them when they now have to find a job?
Blas, whose son Joseph is now 16, has some worrying news about that. Based on what she knows from talking to other parents of children on the autism spectrum, “there really isn’t much [help], unless you are at a higher functioning level and are employable.”
A Dededo mother, who asked not to be named, said her 23-year-old son, who is non-verbal, trained with a janitorial company and a restaurant under the DVR program.
“But after the training, they never hired him. My son is OCD when it comes to cleaning so he would have been an asset for these companies,” the 54-year-old mother said. “I tried to help him look for a job, but we were told to go back to DVR. When we went back to DVR, we were told that there is a limit to training eligibility and that he has already hit the limit, so they could not renew him.”
There are limited programs in Guam that could be tapped, but they are not specifically tailored for children on the spectrum, Blas said. GDOE has a special education program, but nothing specializes in autism.
A child with special needs can stay in GDOE until their 22nd birthday. “But after that, there really isn't much if a child is lower-functioning,” she said.
Autism comes in different levels.
Level 1, known as high functioning autism, refers to a person with social communication and interaction challenges, but who can often live independently and have a fulfilling career.
Level 2, which requires more substantial support, has more pronounced challenges in social communication and interaction, and may also show more frequent and intense repetitive behaviors or restricted interest.
Level 3 represents the most severe end of the spectrum. Affected individuals usually have a limited ability to talk and require a lot of support for daily living, including self-care.
Blas said that support services, especially for those on Level 3 of the spectrum, are badly lacking in Guam and leave parents flailing to find support.
She said “nine out of 10” parents are frustrated with DVR, which requires a labyrinth of requirements that parents can’t navigate.
For instance, Blas said, many ACT parents have told her that DVR is supposed to have a program where they work with employers to train those on the autism spectrum so they can become employable. Under that program, DVR is supposed to tell employers about a program where DVR pays the employer to train the individual to become employable, and, after six months, the employer will hire them.
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“But, from what I’m hearing, is that they’ve been returning [federal] money because they’re not just doing the program. …That’s what I’m hearing,” she said.
If the program is actually put into practice, it would be an incredible one, as it will eventually allow the affected person to take over the job and have a career, whether it’s at a hotel or restaurant, she said.
“There are so many possibilities, but what I’m hearing is that they’re [DVR] not just taking advantage of that program to help the individual become employable,” said Blas.
Even the experience of tapping iCan Resources Inc. is not smooth sailing, Blas said.
iCan, a non-profit organization that offers training and employment opportunities for individuals with disabilities, first requires a “verification” of the affected individual’s disability from DVR in order for the person to get job training or even a job.
“And parents just wait and wait, and it doesn’t happen,” she said.
That DVR certification is crucial, Blas said. “If DVR gives the parents this verification to give to the employer, iCan can hire them,” she added.
Of course, it’s not all doom and gloom. There are cases when things work out for some parents, “but not all the time.”
Yes, Blas said, there have been a handful of cases where an individual on the spectrum became employed. “The kids just love working, whether it’s doing janitorial work or working in the kitchen or any other job that they’re capable of doing,” she said. “They love it because it gives them something to do, it gives them a social atmosphere where they have colleagues. They’re happy doing it.
“In the end, that’s what we want for our kids. We want them to just be happy, and if they’re happy doing any kind of job, that’s all we want for them,” she said.
Blas said persons on the spectrum who are higher functioning are usually very focused and work well. “That’s what we’re trying to tell employers, and when we talk to people.”
She said those on the spectrum who now have jobs are happy because they have a routine and are making a contribution in a job as well as at home.
“It's not an easy experience, but those on the spectrum have very hardworking parents who advocate and help them get a job they are happy with,” she added.
It’s not as if these individuals are asking for anything outside the ordinary. They just need a supportive environment, Blas said. That, in a nutshell, is just the basic idea of providing accommodation, similar to what employers do for others with disabilities.
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What can employers and the greater public do then? Blas encourages people to be more aware that just because an individual has autism, it doesn’t mean that they cannot contribute anything.
“If they get to know the individual, they’ll learn that they have a lot of capabilities, and if you work with them and teach them what they need to do, I think they’ll be very highly effective in any employment,” she said.
At DISID, Perez said the department continues to conduct outreach efforts through school visits and community presentations to raise awareness about DVR services and the steps involved in accessing them.
For parents with children on the spectrum, Blas encourages them not to give up and to keep pushing the system to do what they’re supposed to do. “They go in and they try to seek assistance and they’re not just getting it, so then they give up. …Don’t give up because we have to keep pressing the system in order to get what your child deserves,” she said.
Perez acknowledged that navigating requirements can be overwhelming for families, “[but we] are committed to improving the process to be as clear and supportive as possible.”
Those who need help understanding DVR services or eligibility requirements may contact DISIDS or DVR directly to be walked through the process. They may reach out to DVR Administrator Joseph Cameron at
Joseph.Cameron@disid.guam.gov or by phone at (671) 475-4624.
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