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Adults With Autism: Scarce Funds & Wait Lists

Since the year 2000, there have been a number of policies and regulations enacted on the state and federal level to help children with autism. But eventually, those children grow up. Everything changes when a child with autism becomes an adult.

In the back of a large building at the ARC Gateway campus in Pensacola there is a large industrial paper shredder next to a large room filled with tables and people sorting paper. One of those people is Nikiya Houston, who says her job is pretty simple "To shred paper and to sort paper." 

Nikiya is one of about 275 people with varying disabilities that are employed by ACR Gateway. Those disabilities include autism. They are one of the few places that have programs and job opportunities for adults with autism who have aged out of the school system.

For school age children with autism or other qualifying special needs, local school districts must create an IEP, Individualized Education Plan. Implementation of that plan is monitored and adjusted as needed according to current regulations. After that, services get scarce. Jennifer Findley is Behavior Analyst at the Autism Center at Sacred Heart Children’s Hospital in Pensacola, and the mother of a child with autism. "We actually have a lot more services for them when they're children compared to what happens when they become 18 or 21 [years old]. Now insurance isn't covering them or they're back in the Medicaid system and what do they do for employment and how are they going to be sustainable and how, as a community, are we going to be able to support them. And I think that's an area...that we really need to work on because our kids are not three years old forever." 

"We say they sometimes graduate from school to mama's couch" adds Susan Byram, the President and CEO of Autism Pensacola and another parent of a child with autism. "And that's a very sad thing. When a person has worked and a family has worked for all the years of public school to push and improve and build skills. And suddenly, boom, nothing!"

When you talk to people who deal with children and adults with autism, you invariably hear about “the wait list”. While there are programs and services that help adults with autism live and work independently, the money for those programs is in short supply. "Those [services] are all funded through an agency called the Agency for Persons with Disabilities." said Byram. "And...that agency has a waiting list of over 20,000 individuals across the state."

Being on a waiting list for services is a fact of life for families seeking help for a loved one with autism. Dr. Christine Ogilvie, an Autism Consultant for CARD, the FSU Center for Autism and Related Disabilities, even advises her clients on managing the list. "I try to tell them at the middle school level [to] get on the list for vocational rehab, get on the list for A.P.D. because you're going to be on a waiting list and it's going to take time."

And the sooner someone gets on the list the better. "You can get on [the list] anytime after your third birthday once you get an official diagnosis from a doctor, a physician of your choice" said Melissa Rogers, the CEO at ARC Gateway. "It's a referral process. it's very easy to get on the wait list once you fill out all of the documentation and meet with a state representative. However, the people [who] are coming off of the wait list are the ones who have the more severe needs. They could be homeless, they could have no caretaker involved with them. So the average individual that is safe, living in their home with their family is not going to come off the wait list very quickly."

For those people still waiting for funding, there are agencies that offer help. Dr. Ogilvie from CARD says their services are free of charge. Those services include working with clients on their job skills  as well as working with employers on autism awareness and how to accommodate the needs of a worker with autism. "Everything we do is free because we're a state funded grant. I do a lot of one to one work with clients, and then we have our adult groups that we do. That's more on social [skills] aside from [job] interviewing skills."

Providing services for children and adults with autism can be hard, frustrating work. But the people we spoke to for this report without exception say they love the work. Many of them have someone with autism in their family. "It's not about fixing something or curing something. It's about maximizing potential in every human being" said Susan Byram from Autism Pensacola. "And just reaching out and building a better community that can support everyone." 

According to the CDC, about 1 percent of the world population has an autism spectrum disorder. In the US, more than 3.5 million Americans are living on the autism spectrum. 

Here is how you can reach some agencies that can offer help and services:

The Agency for Persons with Disabilities: (850) 487-1992 

Autism Pensacola:(850) 434-7171

CARD (Center for Autism & Related Disabilities): (800) 9-AUTISM

ARC Gateway: (850) 434-2638

Pyramid Inc (a group for artists with disabilities): (850) 453-3341

Florida Division of Vocational Rehabilitation: (800) 451-4327 

Copyright 2020 WUWF. To see more, visit WUWF.

Bob Barrett has been a radio broadcaster since the mid 1970s and has worked at stations from northern New York to south Florida and, oddly, has been able to make a living that way. He began work in public radio in 2001. Over the years he has produced nationally syndicated programs such as The Environment Show and The Health Show for Northeast Public Radio's National Productions.