Lisa Archibald’s ‘Gut-Wrenching Choice’

Story and photographs ©Robin Rayne/Zuma Press

Byron, GA — Lisa Archibald is reluctantly preparing her modest home for sale.

“Caring for my brother is my priority. I don’t want to move, but I won’t be able to work full time anymore if the state cuts disability budgets.   We’ll need a smaller home,” she said.

Her brother is John David: 36, non-verbal, quadriplegic, and profoundly disabled because of cerebral palsy, polymicrogyria, and dysplasia. He lives in Archibald’s home and requires 24-hour care. He has seizures, restrictive lung disease and silent aspiration into his lungs, which requires constant supervision to prevent choking.

She’s been able to care for her brother in her home with the help of a patchwork of support staff, funded by a Medicaid waiver for daily in-home care. “J.D. really requires 24-7, two-to-one care, but we’ve been making do with the staffing hours we’ve had for many years,” explained Archibald, 53, who provides much of his hands-on care herself. She assumed responsibility for his care since their mother died 23 years ago. She removed walls in her living room to accommodate his bed and medical equipment. His care is center-stage in her life.

If proposed caps for support for Georgia’s medically-fragile residents become reality in two months, “Families will have to make one of the most gut-wrenching decisions of our lives:  to choose between quitting our jobs, losing the ability to support ourselves and other family members in order to care for our person, or placing our medically-fragile family member in a group or nursing home,” she said.

“My brother was in a group home for several years, and nearly died. To place him back into another group home would be a death sentence. He would not survive. John David loves being at home and being a part of our community,” she said. “He knows he’s loved.”

 

While group homes may be a good choice for some people with developmental disabilities, those who are also medically fragile are not usually a good fit, Archibald explained.  “The homes aren’t set up for the magnitude of needs this group has, and the state doesn’t have the ability to provide the needed oversite,” she said.

Archibald’s brother needs a continuity of care that can only come from long-term staff members with proper training, and group or nursing homes are too often a revolving door for staff, she said.

 “When you put those two things together, this risk to John David is significantly increased. He only has 25 per cent lung capacity on the left and 50 per cent on the right.  I don’t want to think about what would have happened to him if he had been forced into a group home before Covid. I truly believe I would have lost him,” she said.

“These Medicaid waivers were created to enable the developmentally disabled population to live in the least restrictive environment, choose where they live, who they spend their time with and who takes care of them. The proposed change to the waiver takes all their choices and freedoms away,” she said.

John David’s condition requires 24-hour care with two caregivers. One must either be an LPN or family member trained in CPR, administering medications and tube feeding, and suctioning fluid from his lungs.

“I already do 12 hours of care a day, plus cover every shift when staff calls out sick. Now I’ll need to do hands-on care 20 hours a day.  When would I work, sleep, or grocery shop? I never leave the house as it is, and I rely on family or friends to shop for us.  I wonder how the state expects us as family members to do that number of hours? The answer is, they don’t. They put us in a position to where we don’t have a choice, except to put them back into state-run homes. But I won’t do that to my brother.”

“I’ve already put my home on the market. I need to downsize so I will have a lower house payment that I can afford only working part time, and care for my brother at home the best I can.”

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

The number of medically fragile Georgia residents who are at risk of relocating from their homes to a group home or nursing facility is presently 187, according to disability advocates who are fighting the proposed budget cutbacks.

Judy Fitzgerald, DBHDD Commissioner, 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 for

additional staffing services and a 16-hour maximum daily authorization for skilled nursing services, notes Shelly Dollar, a Georgia disability advocate and parent of a profoundly disabled young woman.  “Georgia residents who require more than the new limits would be redirected to group residences,” she said.

While Archibald acknowledged that state budget cuts are necessary, she has asked DBHDD officials to look into fraud and waste first. “Instead of butchering the budgets to the most vulnerable of our community, they could take a look at the entire budget and use a scalpel to make the needed cuts,” she said.

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