‘This is unacceptable’: Scorecard says Tennessee falls short for supporting children and adults with disabilities

MEMPHIS, Tenn. (WMC) - Almost one-third of Tennesseans live with a disability, but advocates monitoring support, education and available resources give the Volunteer State a “D” for its policies, practices, opportunities, and outcomes for those living with disabilities.

The Tennessee Disability Coalition is behind the scorecard.

This year’s “D” grade is lower than last year’s “D+.”

This year’s failing categories are in caregiving support, affordability of care, and housing.

The state scored a “D, ” average or above, in aging, transportation, early intervention, mental health access, and employment.

Despite the passing grades, the coalition says the state has not made the necessary improvements to soar past last year’s score.

The Boywids of Memphis tell Action News 5, they’re not surprised.

William and Elizabeth Boywid’s five-year-old daughter Dauphine was diagnosed with Rhombencephalosynapsis, a rare brain malformation, when she was just a baby.

Her secondary diagnoses, VACTERL with Hydrocephalus, have threatened her life, causing several emergency visits over the last five years.

William says in her short life, she’s made tremendous strides they can only describe as a miracle.

“She’s incredibly smart, and up until May, she couldn’t even walk one step,” said Dauphine’s father, William Boywid. “Two and half years before that, she couldn’t even lift her head up. She would roll around on the ground. I’m just saying, she is amazing.”

William says he and his wife work six jobs between the two of them to help cover medical expenses.

“We have definitely forgone opportunities in the past to make a little extra money here and there so we could care for Dauphine,” said William. “The state is committed to taking care of her by supporting us. At least that’s what they say, but the ‘F-’ in that category on the scorecard totally makes sense. I wish it could be lower because it feels that way.”

Dauphine uses a “G-Tube” in order to eat and has a service animal, a Cavalier King Charles Spaniel, named Figgy.

“She has tons of medical equipment that has to be kept up, maintained,” said William. “We have to stay ahead of it. It’s not just a, you do it once and it’s automatic. On a monthly basis, we are calling various different vendors to make sure she has everything that she needs.”

They’ve been in a sort of a tug of war at times with TennCare when it comes to caring for their daughter.

“In September, it took about three weeks before we were able to start talking to Consumer Directed Care, our provider,” said William. “My wife’s mother has not gotten paid after three-and-a-half weeks of submitting her first payroll cycle. And it took us that long, three-and-a-half weeks to go before she could even start caring for Dauphine under this program.”

Jeff Strand, the coordinator of Government and External Affairs for the Tennessee Disability Coalition, says access to care, specifically in the Bluff City, needs work.

“They’ve [The Boywids], gone to college; they’ve gotten good jobs, and it’s just not enough,” said Strand. “We don’t provide enough support to family caregivers. As the population grows in West Tennessee with Blue Oval City and whatnot, those resources are just going to be spread even thinner. That’ll really leave families, family caregivers, people with disabilities, kind of hanging out to dry.”

The coalition gives the state an “F-” for family caregiving support, specifically for system failures, an absence of caregiver-friendly policies, failure to exceed the federal minimum requirements protecting spousal caregivers from poverty, and a below-average wage for direct support professionals.

“I really think it’s important that Tennessee look at itself holistically and say that a D is an unacceptable grade to us,” said Strand. “That’s the experience of nearly a third of the state. We need our lawmakers to look in the mirror and say this is unacceptable. You need to look at special education. You need to look at transportation. You have to question your access to mental health care. You really need to invest generously in that and really prioritize improving the lives of Tennesseans with disabilities.”

The Boywids hope lawmakers see this scorecard and take action not just for their daughter, but for children and adults all over the state.

“She is a miracle,” said William. “Just every day I see it and I just would like to tell the legislature and TennCare, she is a person. She is your member; she deserves your support. Your love. Your care and compassion.”

The Boywids plan to take a trip to Nashville during next year’s legislative session expressing their concerns to lawmakers.

This year’s scorecard includes “homework” and suggestions on how the state can improve.

You read the executive summary of this year’s scorecard, here.

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