MOHAWK, Tenn. — Drama Bryant’s entire life has revolved around caring for her little brother, Jay, who — at 32 years old — requires 24/7 assistance as a result of congenital conditions that leave him unable to eat, bathe, go the bathroom, speak or walk unassisted.

Jay Bryant has Down syndrome and autism, suffers seizures, severe reflux disease and eczema and lives with chronic pain. If no one is looking, he will try to eat grass, dirt, rocks or other inedible items. When he’s distressed, he hits himself hard enough to leave marks.

His intellectual and physical disabilities qualify him for a program operated by the Tennessee Department of Intellectual and Developmental Disabilities that is supposed to provide Jay with 337 hours of professional care each month in the home he shares with his 69-year-old mom — who herself has a disability and early symptoms of dementia.

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But his family has gotten no outside help. Instead, it has fallen to Drama Bryant, 38, to step in to care for her brother, full-time, while their desperate search for caregivers continues.

Tennessee, much like the rest of the nation, has long experienced a shortage of workers willing to take the low-pay, high stress jobs that are vital to helping people with severe disabilities live with dignity in their own homes and outside of institutions. The caregiver scarcity has reached crisis proportions during the new COVID-era of labor shortages.

Families like the Bryants, however, face yet another barrier to finding professional caregivers, this one specific to Tennessee.

Jay Bryant is enrolled in a program through the Department of Intellectual and Developmental Disabilities, which provides home-based services. The services are paid for by Tennessee’s Medicaid program, TennCare, which provides similar services to people without intellectual disabilities.

The two programs offer differing pay rates for comparable work. DIDD’s program pays lower wages to in-home caregivers for people with intellectual disabilities than TennCare pays for caregivers providing the same services to other home-bound individuals — those with physical illnesses or disabilities, for example.

As a result, families of people with intellectual disabilities are not just competing for workers with fast food and retail industries. They are competing for workers who get more money from TennCare for providing the same toileting, feeding, bathing and daily care to people who are equally physically incapacitated but do not have an intellectual disability.

For Drama Bryant, an energetic and no-nonsense woman who has gone toe-to-toe with state officials over the lack of staffing for her brother without success, the bureaucracy behind the pay differences costing her brother the help he needs makes no sense.

“They need to stop making excuses for being short staffed and lower pay,” said Bryant. Her voice was matter-of-fact as she spoke, but she was staring into Jay’s eyes with a wide smile holding both his hands as he pushed against her affectionately from the living room couch of her mother’s home in northeast Tennessee.

“They’ve done that for years,” said Drama Bryant, whose aspirations to become a full-time web designer have been put on hold to take care of her brother. “The way I look at it, I know it’s serious and I know that unemployment was paying more, but that’s the situation and they have to compete with that. Is my brother not deserving of care because he’s got this kind of disability?”

In-home care can encompass a variety of job titles including skilled nurse, personal assistants, home health workers, physical therapy, housekeeping and other therapeutic caregivers. The purpose of the programs is to keep individuals who would otherwise qualify for a nursing home at home with visiting staff caring for everyday needs.

State lawmakers this year approved a raise for support workers caring for people with intellectual disabilities at home — from $11 per hour to $12.50, bringing their pay in line with the rates paid to TennCare workers providing similar care.

But the disparity in pay rates for all other in-home workers remains.

Take the example of a respite worker, who can relieve regular in-home staff or family members. TennCare pays managed care organizations who hire the workers a rate of $4.03 per quarter hour, according to the agency’s most recent rate scale. Agencies who hire workers to provide similar respite services to people enrolled in the DIDD program are paid $3.91. The rates represent the amount paid to the middlemen — nonprofit agencies or managed care organizations, who in turn set rates for their workers.

Other pay rates are difficult to compare directly given differing types of pay scales provided by each agency. Vanessa Zapata, a staff attorney with the Tennessee Justice Center, said attorneys representing people enrolled in both programs have been unable to get hard ranges or pay scales.

In July, Zapata and attorneys with the Tennessee Justice Center filed suit in federal court against the state alleging it has discriminated against people with intellectual disabilities in violation of the Americans with Disabilities Act and the Medicaid Act.

“The State … fails to provide in-home care required to meet the Plaintiff’s acknowledged needs,” the lawsuit said. “As a result, the Plaintiffs repeatedly experience gaps in their care, causing preventable suffering, harm to their health and heightened risk of involuntary institutionalization.”

“The State’s chronic failure to meet the Plaintiff’s care needs is due to the State’s longstanding insistence on paying lower rates for home care services for people in the DIDD Waiver than TennCare pays for identical services provided to all other TennCare enrollees.”

A spokeswoman for the Department of Intellectual and Developmental Disabilities declined to respond to questions about pay disparities or how many individuals enrolled in DIDD’s in-home care programs lacked adequate staffing, citing the ongoing lawsuit.

The agency uses social media to highlight the benefits of becoming a direct care worker, said Cara Kumari, the spokeswoman. Kumari noted that pay rates are out of the agency’s hands. Each agency that contracts with DIDD to provide care makes it own hiring, wage and benefit decisions, she said.

The suit has thus far led to a partial victory for the Bryants, who are named in the suit.

Attorneys have agreed to an order in the case that requires state agencies to ensure Jay and four other plaintiffs immediately get the in-home care for which they have already been approved.

Drama Bryant, who hopes she will still get the time to pursue her career in web design, said that making sacrifices for her brother is a no-brainer. She has set her career aside for now, and lives in a mobile trailer behind her mother’s home so she can be nearby. She isn’t married and doesn’t have children — not, she said, because they can’t find caregivers, but because “Jay just wouldn’t understand if I did.”

“I just want people to know there’s families like us who just can’t get any help,” she said. “Jay’s really not hard to take care of. And I will always be in the background fighting for his legal rights.”

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