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Making a Difference | Central PA moms fight for funding for adult autism support programs

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Central PA moms of sons with autism fight for more funding for adult support programs

The Centers For Disease Control & Prevention just recently adjusted the prevalency rate for Autism Spectrum Disorders to 1 in 59 - a 15% jump from 1 in 68 just six years ago.

And that means more of these children being diagnosed are going to lose services when they become adults - a term referred to as "falling off the cliff."

Well a group of Pennsylvania moms with adult sons on the spectrum are in the process of enrolling for adult services provided by the state and county agencies.

But there's a debate about whether those services have adequate funding.

Amy Hudson has a 21 year old son with autism. Cody is currently a student at The Vista School in Hershey, a private school for kids with autism. https://www.thevistaschool.org/ When Cody graduates he will lose the services the Vista School and the state provides for children with autism and intellectual disabilities.

"My son will not have a place to go every day because there's not enough funding...", Hudson says.

Hudson adds she would have to quit her job to take care of her son at home because without the support programs, Cody can’t work outside the home.

Lori DeVelin is in a similar situation with her 21 year old son, Eddie. DeVelin says, "For parents who do work, it's unfortunate that some parents need to quit their job and this becomes a financial hardship."

What happens after these students graduates is also a concern for Becky Huhn whose 18 year old, Ethan has autism. She says, "We know our boys can be successful with the right support with people who support them and help them, they can go far. But without the funding, we're stuck."

These Central PA moms all have their sons enrolled at The Vista school, but upon graduation they will lose services or “fall off the cliff”.

And that's why they are sounding the alarm.

DeVelin says, "Statistics show that after your child graduates and if they are not receiving services and they're just sitting at home, they regress. So, all those years of progress being made through their education years is gone."

The state Office of Developmental Programs, or ODP, within the department of Health and Human Services, handles the funding of the Adult Waivers. http://www.dhs.pa.gov/citizens/autismservices/

These waivers are in place to provide those services which can include job coaching, respite, transportation and behavioral support.

Nancy Thaler, Deputy Secretary for the Office of Developmental Programs says the waiver programs started back in the sixties for people with intellectual disabilities (formerly referred to as Mental Retardation – MR). The waivers were revamped over the years to include other disabilities including autism) "It is very complex for families and the concept of Medicaid Waivers, while wonderful because it provides an influx of federal funds into the state, it has its complications and we actually have four different Medicaid waivers, but the door to all of them is thru that county office.", Thaler says.

In order to get those services, caregivers of children who are in their early teens should visit their county assistance office. https://www.cmu.cc/

These moms have done that.

They were assigned a case manager and Amy Hudson even came up with a budget for how much funding would be needed for her son Cody to live after graduation.

$97,000 a year!

Problem is - one of the four waivers caps out at $70,000 - another waiver only provides half that!

And there is one waiver that has no cap - but the moms were told there are no more of those to offer.

Hudson says, "Governor Wolf says every student graduating in the 2018 and 2019 classes would have waivers - as if that's some big to do. What do you do if you get a $34,000 waiver? That's nothing, it's not good enough!"

They are asking the governor and state legislators to look at how the funding of these waivers work and find a way to provide enough money to address this population's real needs.

Unfortunately for these moms and their adult sons, it might be too late.

DeVelin says, "It makes me sad knowing that this is all coming to an end for him. His whole life is going to change drastically and he doesn't handle this well, change is not good."

Jen, who has a 20 year old son with autism says there are private companies who see value in her son as a worker and they’re paying him. She questions why, if her son used a wheelchair or other device, the state doesn’t take that away when he turns 21, so why are they taking away the employment and behavioral support when he turns 21?

Jen says, "It seems like he was always safer when he was a child because an adult will stop and help a child if they see him alone. If they see him as an adult alone, nobody is going to go up to him thinking he needs help. That's what's so scary to think about. If I'm not here for him, he's always going to need somebody with him and we're not asking for cash handouts, we're asking for access to services."

Another part of the problem is there are waiting lists for most of the adult waivers. But Nancy Thaler points out that there are services to help individuals achieve their goals and improve their quality of life regardless of their waiver status. The Wolf Administration has made policy changes allowing every individual with an intellectual disability access to service coordinators to help them receive basic needs regardless of their age, even while on the waiting list. Individuals are also eligible for additional services depending on specific county offerings. And individuals can participate in other waivers while they are waiting for the Consolidated waiver.

Here's more response from the Office of Developmental Programs:

• There are four waivers in ODP: PFDS is capped at $33,000; Community Living is capped at $70,000, Adult Autism Waiver is not capped and the Consolidated is not capped. For each waiver we plan for expansion and utilization. We know the specific number of individuals we are approved to serve and past service utilization patterns inform our predictions.

• The support coordinators can only offer enrollment in a waiver if there are vacancies in the waiver. We cannot add new individuals when the waiver is at its approved limit.

• We know the individuals of people to be served and past utilization patterns inform our predications for future budgets. The populations in all waivers is quite stable. Approximately 5% of the individuals are discharged or leave in one year which is the number of new people that can be enrolled.

The moms say they will still advocate for more funding for these waivers and they are urging others to join them as they fight for funding.

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