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Parents of adults with disabilities face numerous challenges

When Ishan Nayak turns 22, he will no longer be able to attend school during the year.
Posted at 10:52 AM, Jul 23, 2023

Life is about to change for 21-year-old Ishan Nayak.

“In October, he’ll be done with high school," his mother, Sitara, said. "So that’s the huge change, and now it’s, ‘OK, after school, it's the rest of his life.'"

Ishan has developmental disabilities. When he turns 22, he will no longer be able to attend school during the year. 

It puts a burden on his parents who have been searching for day programs near their Atlanta suburb.

“The only place that I could find is about 25, 30 miles from our house," Sitara said. "So, it’s a good 40-minute one-way drive. That’s basically two hours of driving every day, just dropping off and picking up. We count ourselves lucky that we even found a place for him because that's not the reality for most families.”

What the Nayaks face now is what many across the country have known for years: services and programs for adults with disabilities don’t come close to covering those in need.

“Our heart breaks for families because we provide services," said Diane Wilush, who runs United Cerebral Palsy of Georgia and South Carolina. "That's our mission. That's our objective. That's what we exist to do. But because of the lack of personnel due to the funding, we often will tell people, ‘Check back with us. We just can't support you now.’”

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Individuals with intellectual and developmental disabilities often rely on waivers from Medicaid to receive government-funded services. But the waiting lists for those services hold nearly 500,000 people.

This year, the Georgia state budget included a pay raise for direct care workers from more than $10/hour to more than $16/hour. Georgia’s governor, Brian Kemp, removed that raise, saying it would take away funding from other services.

“This issue of personnel is directly related to funding," said Wilush. "This issue of a waiting list is inextricably related to funding. We’ve got to get that right. And if we don’t, we may as well just accept that this is the way things are.”

The Nayaks still have their waiver. It’s why Ishan can enroll in a day program, but that’s just one answer to a host of questions that await them when he turns 22.

“He’s always so joyful and so happy, and even the smallest things, he’s grateful for," his mother said. "So, I think it really motivates us to continue to keep that spirit in him."

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