ATLANTA — From art projects and scavenger hunts to community service and field trips, connection is at the heart of the Exceptional Foundation of Atlanta.
“One of the biggest parts is they have a community,” Beth Malanoski explained, “Everyone is so accepting. It doesn't matter what disability you have. They're a team.”
Malanoski is executive director of the nonprofit, which provides day programming for young adults with disabilities. The program is a refuge for people like her son John who has aged out of school-supported programs, but is unable to stay home alone.
“They are so well taken care of in public schools," Malanoski said. "There's always somebody helping you make a plan, and literally on your 22nd birthday, you're done with all those services.”
When that time comes, some parents struggle finding further support, she explained, given new challenges around cost of programming and transportation needs.
Meanwhile, some families spend years waiting on services.
“We’ve been on the waitlist for 10 years,” Jennifer Brex said. “We got on the waitlist in 2009 when [Zachary] was in eighth grade. And I really don't even think that he will get to the top of the list until my husband and I die because the list is so long.”
According to the Georgia Council on Developmental Disabilities, there are more than 7,000 people on the waitlist for a Medicaid waiver in Georgia.
The waivers help pay for home and community-based services for people with developmental or intellectual disabilities who could otherwise be routed into institutional care.
“The NOW and COMP waivers are what allows people with intellectual and developmental disabilities to remain out of institutions and nursing facilities by providing such needed services as somebody to come in and help you get out of bed in the morning, somebody to help you go to work, somebody to help feed you if you need feeding," Eric Jacobson, executive director of the GCDD, said. "The activities of daily living that most of us take for granted."
Advocates like Jacobson say the main issue is funding, and that’s a source of frustration for families like Brex, who are still waiting for such support, and Georgeanna Kelly, whose job was on the line when her 27-year-old daughter Sherika finally received the waiver.
“I was at a crossroads needing urgent, you know, assistance,” Kelly said. “You know me trying to work, Sherika not being able to be left home alone because she hears noises and just from a safety standpoint.”
Kelly said she completed requirements as instructed to her by the Georgia Department of Behavioral and Developmental Disabilities but ultimately, exhausted all measures.
“I called them every single day for maybe two weeks,” she said before receiving word she’d been approved. “I just teared up. It was an emotional day for me.”
Kelly feels for other families who are still in limbo; she said she’s heard of many who have given up on the process.
“When I started seeing other stories out there about how they were waiting,” Kelly said, “I’m thinking what happens to the child, what happens to the adult?”
The strain on families is equally felt by Brex, who is no longer able to work and drives her 23-year-old son Zachary to and from the Exceptional Foundation of Atlanta each day.
“If there were no programs like this, he would be sitting at home,” Brex, said. “I can drive away from this parking lot and know that my child is first of all loved, taken care of, being happy, interacting with others."
The alternative, she said, would be isolating, especially for her son who has autistic tendencies. Without the Exceptional Foundation of Atlanta, Brex fears Zachary would lose all the advances made while in school.
“I was a special education teacher, and I know when you even send the child home for the summer they regress so much in eight weeks. So, if you have someone who's been in school all the way through - and then suddenly they're sitting at home, they're just kind of go backwards in everything," she said.
"You've got to have some programs so that they can just keep inching forward in their skills and in their lives, and they deserve a good life.”
But such programs are not without cost.
“With Exceptional Foundation, we can get in at a discounted rate that we can afford,” Brex said. "But we couldn't afford $19,000 a year which is what we'd have to pay if he went to some of the other programs.”
The Exceptional Foundation of Atlanta seeks to bridge the gap. Around half of the families they serve get scholarship funding to be part of the program. Yet, the need is great.
“Because of our funding hybrid setup, we are able to serve those who don't yet have the waiver, and we make our prices very affordable by fundraising,” Malanoski explained.
Her family is also in the process of trying to secure the waiver.
“I know the struggles,” she said. “If I hadn't been able to work here or find here, we would have to find something for John to do every day because he cannot stay alone.”
According to the Georgia Department of Behavioral Health and Developmental Disabilities, 100 new waivers were funded this past year. As of December, there are 7,047 people remaining on the list.
A DBHDD spokesperson confirmed the waitlist, which the agency refers to as a planning list, is prioritized based on “level of unmet need, reviewing both health and safety, and the individual’s support system.”
“DBHDD encourages families to plan ahead and apply for services even when there are not unmet needs so if a need arises, we can engage quickly and connect individuals with the most appropriate services,” the spokesperson said. “Individuals on the planning list are evaluated for their level of need on an annual basis, at minimum, and upon any change in level of need, individuals are connected with any appropriate DBHDD state-funded or any other resource as indicated by their age and need.”
Because families can apply early, DBHDD confirmed some of those on the waitlist includes minors, who may still be receiving services through their school and other treatment programs administered by the Department of Community Health.
“Many people on the planning list are currently receiving state-funded services and supports, such as family supports, based on their need,” the spokesperson stated. “The bottom line is that being on the planning list does not mean that a person’s needs are not being met.”
Advocates and families, meanwhile, maintain more can be done to serve this community. According to Jacobson, the need is not unique to Georgia but remains a budgetary issue (state dollars are matched by federal dollars).
“There’s 7,000 people waiting,” Jacobson said. “If we only get 100 or 200 a year, my grandkids will be around and will be adults before they ever get to addressing really the last folks on that waiting list.”
As a result, advocates and families will once again petition lawmakers and Gov. Brian Kemp in 2022 to provide more funding.
“We're always asking for at least 1,000 slots a year because it's the only way that we think we can make progress on the effort to address the waiting list,” Jacobson said. “However, we're also realistic, and we know that even with an increased budget, if we're able to get between 250 and 500 this year, we would be really happy about that.”
Jacobson said he’s already been in touch with Gov. Kemp’s office and remains hopeful given increased revenues projected for the coming year.
While Gov. Kemp’s office is not yet providing specifics for the governor’s budget proposal, a spokesperson released the following statement: “The Governor looks forward to proposing a balanced budget in the 2022 legislative session that funds our priorities as a state – education, public safety, and healthcare – and championing legislation that puts hardworking Georgians first and keeps our state the best place to live, work, and raise a family."