Georgia parents fear for their disabled children: Return to pre-Olmstead?

Story and Photographs © Robin Rayne/Zuma

Mike and Sheila McBroom often lie awake at night, filled with anxiety about their disabled adult son Tim’s future.

Tim, 36, who is non-verbal and experiences severe autism, has seizures and behavioral issues. McBroom and his wife are doing their best to provide their son with a safe and secure environment in their Jonesboro home, with daily help from Medicaid waiver-funded support staff.

But proposed cutbacks to those Medicaid-funded services turn their son’s life upside down.

Georgia’s disability officials are currently wrestling with likely budget cuts that will dramatically impact their son, and 187 others in the state with profound intellectual disabilities who need extensive daily support to remain at home.

“We’ve been able to keep him at home for the past 21 years with supports from the waiver. Tim requires a lot of support and has always had a lot of service hours. That’s the only thing that allows us to have any semblance of a normal life outside of caring for him,” explains McBroom, 65, “but that could change any day, and we feel powerless to do anything about it. The state’s solution is to place Tim and others like him in group homes. That would be a disaster.”

Georgia’s Department of Behavioral Health and Developmental Disabilities supports more than 13,000 Georgians with intellectual and developmental disabilities through several Medicaid waiver programs. Another 7,000 Georgians are on the waiting list for support, with many residents languishing on the list for years.

The McBrooms are deeply angered at the state’s proposal, especially considering Georgia was the birthplace of the U.S. Supreme Court’s Olmstead Decision in 1999. The court ruled that individuals with developmental disabilities could no longer be isolated and segregated from society in institutions. That population was to be integrated into communities when possible, with services provided where they lived. State-owned institutions for the developmentally disabled subsequently closed, and residents were relocated into a confusing and overwhelmed system of skilled-care facilities, group homes, and private residences.  “Person-centered planning” and Medicaid-funded supports resulted in significant quality-of -life improvements for those were able to live in their own homes or with family members, disability advocates said.

“The court ruling was seen as a landmark decision for the disability community, but with Georgia’s proposed budget cuts, many families fear the state is returning to pre-Olmstead mindsets,” Sheila McBroom said.

Georgia’s proposal that Tim and others like him be relocated back into group homes flies the face of what the Supreme Court ordered, she said. “It’s a step backwards for the disability community, and Georgia should know that better than anyone.”

The state’s proposed cutbacks affect 187 individuals like Tim who need more than 16 hours a day of support that allows them to remain at home, integrate into their communities, and enjoy some degree of independence, Mike McBroom explained.   “Under proposed changes to the waiver, Tim will no longer qualify for the person-centered care he needs to remain here,” he said.  “State officials said they have identified the needed numbers of beds in various locations around the state — and all of them are in group homes.”

“This proposal affects Georgia’s most vulnerable citizens and jeopardizes their ability to live in the least restrictive community setting because of their cognitive and physical conditions,” notes Shelly Dollar, an Atlanta mother of a 31-year-old woman with profound disabilities who requires 24-7 in-home care.  “They will lose the care they require to live their best lives,” Dollar said.

 “The state tried to push the group home option in the past,” Mike McBroom recalled.  “We were involved with group homes years ago.   We’ve also had many caregivers who worked in group homes. We’ve seen and heard of too many situations that should not be acceptable. The state has had many group home deaths they cannot explain.  We’re aware of cases where the clients died due to poor or lax attention to issues before they became an emergency.”

Dollar called the state’s proposal a “one-size-fits-all approach where individuals are essentially herded together.” The time when developmentally disabled individuals were segregated away from the rest of society is over, and forcing them to move into institutional-group home settings “is not only inappropriate, it is just wrong,” she said.

The Comprehensive Supports Medicaid (COMP) waiver is one of two under Medicaid authority. It is administered by Georgia’s Department of Behavioral Health and Developmental Disability. “That agency’s mission is to empower individuals with developmental disabilities to live safely and independently in their communities,” McBroom said.

The waiver must be renewed by the federal Centers for Medicare and Medicaid Services every five years. Georgia’s waiver program expires in March. Ashley Fielding, assistant commissioner at DBHDD, said her office is reviewing services that aren’t widely used, redirecting resources into areas where demand is higher.

“They are taking from one pocket and spreading it around so that it looks like they’re doing more than they really are. 187 Georgia residents with serious disabilities who really need the support will pay the price, and it’s all about appearances,” McBroom said.

“Some of them have become self-injurious and/or aggressive with others when forced to live in a group home setting,” Dollar said. “They can’t tell you why aggregate living situations don’t work for them other than by their acting out behavior for which they are typically punished by those who should be their advocates. It’s heartbreaking.”

Even with the support Tim McBroom has, he falls with caregivers and has seizures where the caregiver didn’t know how to respond, McBroom explained.  “We have seen him lose ground when caregivers do not ask questions or pay attention to his history. And that’s with current levels of support. It would be far worse in as group home.”

Tim currently has slightly over 12 hours per day staffing, McBroom said. “This allows them to get out with him during the day and have time to get him settled at night. There is a second person when they are out in the community and that is 7 hours a day. This gives them time to do productive activities, and it allows us to be able to have some time for ourselves.

With the proposed limits on hours, we would lose the ability to have a normal life and Tim would be stuck in the house longer than he is now. We are trying to support Tim with the waiver assistance as long as we can,” said McBroom, who suffered a small stroke brought on by stress.

Judy Fitzgerald, Commissioner of Georgia’s Department of Behavioral Health and Developmental Disabilities, has acknowledged that change is difficult and scary, especially for those with disabilities and their families. “One thing will not change,” she said. “DBHDD is required and strives to meet the needs of every individual who receives waiver services.”

For those who will experience changes, Fitzgerald said that she, her team, and network of providers will work to ensure everyone’s services are designed in a person-centered and collaborative process that empowers them to live safely and independently.

Instead of the 24/7 care previously available under the Community Living Support (CLS) program,the department has proposed limiting services to a six-hour maximum daily authorization foradditional staffing services and a 16-hour maximum daily authorization for skilled nursing services, Dollar explained. “Georgia residents who require more than the new limits would be redirected to group residences,” she said.

Dollar and the McBrooms firmly believe such a relocation into quasi-institutional settings would traumatize their children, with devastating results, including higher risk for injury, mistreatment, and abuse.

“We will be forced to put him into a group home where quality of care is not guaranteed. Tim would have little say in his everyday activities. Many group homes are one step above an institution and with the low pay and low training requirements – not somewhere where we can expect the best quality of life for any consumer,” McBroom said. “If we place him in a group home, they want to control everything. If there are dental issues, they will only get a tooth pulled, since Medicaid will only pay for extractions and not preventative care.”

“As we age and after our passing, we will need safe, enriching options for Tim to live and thrive. The state always has voiced a desire that all plans be person-centered and should improve the quality of their lives,” McBroom added.  “For us to be put in the position that we may have to consider a group home because we can’t get the support we need goes against every bit of this.”