Tax changes challenge care for the disabled in Macon

Leaders at The Arc Macon say the new rules may also impact their funding for programming.

MACON, Ga. — Linda Hayes calls her son Daryl Jr. “the light” of her life. 

Daryl Jr. was diagnosed with profound intellectual disability and Lennox-Gastaut syndrome, a condition that causes life-threatening seizures, when he was a child. 

Now 39 years old, he requires round-the-clock care that Hayes cannot provide alone.

Daryl Jr. now lives at a residential program run by The Arc Macon, an agency that provides activities, employment and living options for adults with intellectual and developmental disabilities. 

“He requires 24-hour care and we are so grateful for The Arc because of the way they provide that for him,” Hayes said.

But recent changes to federal tax policy have created new obstacles for families like the Hayes, according to administrators at The Arc. 

President Trump’s tax bill, passed this month, would change the application process for Medicaid waivers that fund home and community-based services. The legislation now requires reapplication every six months instead of annually.

Hayes says she supports the tax bill, but not the new hoops that families like hers must jump through.

“The world at large sees people with disabilities as non-productive members of society,” she said. “When we can’t get services for them, the whole family becomes non-productive.”

The Arc Macon receives most of its funding through these Medicaid waivers, which cover essential services for people with disabilities who might otherwise require institutional care. Katrina Spooner, the organization’s Chief Administrative Officer, says the policy change has left her deeply concerned about the future.

“It scares me, it makes me sad, it’s all very depressing and I don’t see the positive impact of this bill,” Spooner said. “That’s what makes me really, really worried.”

Spooner says although the change seems small, it’s a huge unnecessary barrier for those seeking or trying to maintain care. The more steps in the process, the more likely adults at The Arc are to lose care.

“I see this essentially being neglect because I think that there are going to be more people not receiving care, not because they’re not eligible, but simply because they’ve made it harder to maintain this coverage,” Spooner said.

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