Henrico parent fights for services for son with severe autism: 'It's a complete failure'

Posted at 4:43 PM, Jun 15, 2023
and last updated 2023-06-16 14:37:30-04

HENRICO COUNTY, Va. -- Cannon Jeter cherishes the good days with their son Kaleb, but those moments are getting harder to come by.

"I wonder what he's thinking. What he's going through," Jeter said.

Kaleb, 15, cannot talk due to his severe form of autism. His frustration often leads to outbursts which are getting more intense as Kaleb gets older and bigger.

"We've had holes beat out of our walls, the glass out of the door. We've shut down lanes of traffic due to him attacking, black eyes, busted lips, a fractured nose, bruises all over us, it's a lot," Jeter said.

In April, Kaleb broke an exterior door.

"He ended up smashing his fist through the entire window pane and just sliced himself from hands all the way up his wrist," Jeter said.

At this point, Jeter said they cannot handle their son, and he needs to be in a residential treatment home before he seriously hurts himself or someone else.

"He is 290 pounds right now," Jeter said. "It is terrifying. If he honestly doesn't get the help that he needs it's destructive for himself, it's constant injuries for everybody around him."

Jeter said they found the perfect place called Grafton Integrated Health Network.

Kaleb already goes to school there, and they have a group home as well.

But, there's one catch, something called the Community Living Waiver.

"It was great, or at least that's what I thought," Jeter said.

Kaleb was granted a highly-coveted waiver when he was seven years old.

Funded through Medicaid, it allows families to access services they wouldn't otherwise be able to afford.

"It's supposed to help him with community living, with behavioral therapies, just about every service you could imagine for these kids would be under this umbrella of this waiver," Jeter said.

But, while the waiver paid for the Grafton School, it does not cover room and board at the Grafton group home.

So, the family tried putting Kaleb in sponsored residential living, which is covered under the waiver.

But, within a week, the woman he went to live with was overwhelmed.

"She actually put his belongings out on the porch and was ready for us to pick him up and canceled services," Jeter said.

Jeter said they worked with Kaleb's case manager with Henrico Mental Health to find other alternatives, but none worked out.

"None of the places that provide services were interested in being able to help him, or they just weren't adequately staffed to be able to handle that behavior," Jeter said.

At that point, Jeter said they hoped the case manager would advance Kaleb's case to Henrico's Family Assessment and Planning Team, known as FAPT, but that was a struggle.

They have the power to authorize the use of additional state funds in cases like this.

"It comes down to every time I have presented this idea, it gets pushed back and it just goes away like it never happened," Jeter said.

So Melissa Hipolit emailed the state and Kaleb's case manager in Henrico. One week later, Jeter finally got a call from Henrico that she would get a FAPT meeting.

And, on May 23, the Henrico FAPT team authorized the extra funding for Kaleb to live at Grafton.

A win for their family, but Jeter said they can't help but think about others in the same situation who are stuck in an endless loop of inability to access appropriate services.

"I feel like it's a complete failure, it's been the worst failing system, and I've been fighting tooth and nail, and there are so many other people that are going through the exact same situation," Jeter said.

During the FAPT meeting, a member of the Henrico FAPT team said point blank that the resources available under the Community Living Waiver system are not meeting the needs of kids under the age of 18 these days.

CBS 6 asked the Department of Behavioral Health and Developmental Services about that because they oversee the waiver program.

Lauren Cunningham, the Communications Manager for DBHDS, sent us the following statement:

"Both the Family & Individual Support waiver and the Community Living waiver have several services that can meet most children's needs. If families do not feel their needs can be fully met, funding and services can be woven together using sources such as the DD waivers, a Medicaid benefit called EPSDT run through DMAS, and local Family Assessment & Planning Teams (FAPT) funded through CSA. Families often work with local teams such as with their local CSB and local CSA to best meet their child’s needs. To help solve challenges of not enough statewide access to these services, Governor Youngkin has proposed in year one of his Right Help, Right Now plan to add 500 more waiver slots and increase rates by 5% for consumer‐directed personal care, respite, and companion services in year one, and to eliminate the waiting list for people waiting a year or less for DD waiver services during his Administration so people in urgent need of these essential community services can access them."

Henrico County declined to comment on Kaleb Jeter's case.

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