This story also appeared in Georgia Health News

Matt Gaffney had trouble living in a group home for people with disabilities like himself.

He’s nonverbal and suffers from multiple conditions: severe autism, bipolar disorder, chronic gastrointestinal issues.

In group homes, Matt, now 42, had his medications ‘‘raised to higher levels,’’ says Sue Gaffney, his mother. And she adds that his last group home “dumped’’ him into a state hospital.

Matt Gaffney

Sue and her husband, Phil, moved Matt to an independent home in Athens about 20 years ago. The Gaffneys, who live in Evans, cover the cost of his cottage plus other expenses. The state pays for community support aides to assist him 24 hours a day, so he’s not left alone. These aides help him eat, bathe and dress, and take him shopping, among other duties.

The Athens home helped Matt ‘‘become part of the neighborhood,’’ Sue Gaffney says. He works for a half-hour once a week at a local YMCA.

But now the services that he receives could be reduced under proposed state limits on hours of support received. “We are extremely concerned and nervous about this,’’ Sue says. “It’s heartbreaking.’’

“There’s no way our son can be left alone for even five minutes,’’ she adds.

Georgia’s Department of Community Health (DCH), which runs the state’s Medicaid program, has proposed changes that may cut the support hours for Matt Gaffney and 187 other Georgians with severe medical or behavioral health needs. These individuals are served under two federally authorized waiver programs, and any changes such as Georgia is seeking must be OK’d by U.S. health officials.

State officials say their goal is to serve more people, because thousands of people are now on waiting lists for community services.

But the proposed changes to the Comprehensive Supports Waiver Program (COMP) and the New Options Waiver (NOW) have caused an uproar among the parents of individuals getting these services. They say their children are likely to be moved to group homes, where they won’t get the services they need.

“It will be so traumatic for Matt to move him to a group home,’’ Sue Gaffney says.

State officials say the approach that Georgia is taking is consistent with what other states are doing. It will provide access to as many people as possible, said Lynnette Rhodes, a DCH official, at an agency board meeting last week.

And a second state agency, the Department of Behavioral Health and Developmental Disabilities, which administers the programs, says that there are no budget cuts proposed for waiver services.

“DBHDD has worked with DCH to propose adjustments that ensure as many Georgians as possible who are living with intellectual and developmental disabilities have the opportunity to access the supports these waivers provide so that they may live in their communities,’’ said DBHDD in a statement Tuesday. The state spends about $9 million annually to care for the 188 people, officials say.

Matt Gaffney, center, with his parents, Sue and Phil.

But at a House Appropriations subcommittee Monday, parents expressed outrage about the waiver changes.

“They’re looking at this in terms of a spreadsheet and faceless individuals,’’ John Zoller told the panel. His daughter Katie lives independently in Lawrenceville with help of 24-hour services.

Zoller, who lives in Flowery Branch, said that other states such as Minnesota, Oregon and Hawaii have preserved the 24-hour help. He noted that while Katie was living in a group home, she assaulted other people and hurt herself.

“I’m going to die,’’ he told lawmakers. “And she’s got to have a life structure when I’m no longer here.’’

The waiver change adds another major Medicaid-related issue to emerge at the Georgia General Assembly.

The House on Tuesday unanimously passed a bill to extend Medicaid benefits automatically to thousands of uninsured children who get food stamps.

And the Biden administration is threatening to undo Gov. Brian Kemp’s proposal to add low-income adults to the Medicaid rolls by challenging Georgia’s eligibility requirements for recipients — such as holding a job, being enrolled in school or participating in a volunteer program. How Kemp and Georgia will respond to this federal stance is a question that has many legislators speculating.

State board debate

The proposed waiver changes have led to rare dissent on the DCH board.

Mark Trail, a board member who’s a former Georgia Medicaid director, asked agency officials tough questions about the move. He persuaded the board in January to table the issue until the federal Centers for Medicare and Medicaid Services (CMS) could weigh in on the changes.

This month, the board approved the proposal, with Trail voting against it.

Trail told GHN in an interview that he didn’t get “clear answers’’ from state officials on the waiver changes.

If the changes are approved by CMS, Trail said, “there will be some people who will be no longer to live independently, and will have to live in a shared living environment.’’

An alternative would be to add more funding for those on the waiting lists, Trail said.

The state proposal would reduce hours of service from 24 hours to 16 maximum for skilled nursing services. Others could see their hours reduced even lower, families say.

State officials plan for 18 months of transition time before any individual loses the coverage.

“You have our commitment we will work with you personally to ensure that your loved one continues to get the absolute best care,’’ said Frank Berry, DCH commissioner, after the board vote.

The state proposal allows some exceptions to the service cuts.

But Shelly Dollar says her daughter Gabby, 31, won’t qualify for an exception.

Gabby normally lives in a Lawrenceville home with 24-hour care, but during the COVID-19 pandemic, she has been back home with her family. Her mother and another relative are caring for her until she gets vaccinated.

“She’s so medically fragile, we couldn’t risk her getting COVID,’’ says Shelly Dollar, who lives in Atlanta.

Gabby has cerebral palsy, autism and multiple physical disabilities.  She can’t feed herself, dress herself or do anything independently.

“She can’t do anything for herself,’’ Shelly says. “She can’t be alone for a minute.’’

Shelly Dollar is in her 60s, like the other family member who’s helping out. She says caring for Gabby is exhausting.

“With the help of the COMP waiver, my daughter is integrated into her community.”

“Some people do great in group homes,’’ Shelly says. “They don’t have the physical and emotional needs of these 188 people.’’

This story available through a news partnership with Georgia Health News.

Andy Miller, Senior Editor for Kaiser Family Foundation Health News, has been a health care journalist for 29 years. Miller graduated from Duke in 1973 and received a master’s in education from Duke...