Families of medically fragile children frustrated by impact of pandemic – NBC 5 Dallas-Fort Worth


It’s a lifeline for thousands of Texans – Medicaid benefits that help cover the cost of home and community services for people with disabilities.

A family in North Texas contacted NBC 5 Responds while they waited for their child to be assessed for benefits. Their place on the list froze during much of the pandemic, and their wait to assess the benefits grew longer.

Disability rights advocates have said this should not be the case.

The story of a family

At five years old, Hailey Peters loves looking at books, swinging in her garden, and cuddling with her family.

“She has such a positive attitude, and she takes whatever comes her way and is doing really well,” said Hailey’s dad, Greg Peters.

Hailey has a rare genetic disorder. Her parents, Greg and Monica Peters explain that she cannot talk, walk, or eat.

She also has seizures that are difficult to control among other serious medical conditions that require 24/7 care. Although Greg and Monica both work full time, their private insurance does not cover everything Hailey needs, including several weekly physiotherapy, occupational therapy and speech therapy appointments.

“For three disciplines, three times a week, that’s $ 900 a week or $ 3,600 a month. I’m sure there are people who can afford it. I just don’t know them personally, ”said Monica Peters. “We’re working really, really hard and we can’t afford this, but Medicaid would pay for it.”

The Peter’s hope to benefit from a Medicaid waiver program for medically dependent children. It provides comprehensive services so that children can stay at home with their families, instead of a nursing home.

It is a way for families who earn too much money to qualify for regular Medicaid to pay for care that the insurance does not cover.

“People work hard, but when a medical device costs over $ 20,000 and you need 10 different medical devices, who has that kind of money? Monica Peters said.

Medicaid Waiver Interest Lists May Take Years to Fade

There are a limited number of slots for the program, and the state maintains an “interest list” for people waiting to be assessed for benefits.

The Peters said they signed Hailey in 2018 and followed her move on the list of interests.

“Her name was expected to be eligible for services in March, possibly April, at the latest, 2020,” said Monica Peters.

In the spring of 2020, the Peters said Hailey’s place in the queue had stopped moving and remained number 214 on the interest list until 2021.

“One of the hardest things is that there are actually programs and services that even if we want to pay, we don’t have access to because we’re not in the program,” said Greg Peters.

The Texas Health and Human Services Commission said the interest list movement was suspended, in part, to prevent some people from losing Medicaid benefits during the pandemic.

The Texas HHSC also said COVID-19 made assessments more difficult, but it has since addressed those issues and began freeing up slots on the Medicated Children’s Program’s interest list in October.

Hailey’s name has since been taken off the list and her family said she was now working on documents and assessments to see if Hailey would be approved for benefits.

The pandemic highlights the challenges

“I don’t think we’re doing it yet. Even though some registrations do take place, it is more difficult to access the caregiver to provide the services, ”said Susan Murphree, senior policy specialist, Disability Rights Texas.

Murphree said the pandemic highlights the challenges for the most medically fragile Texans.

In addition to the Medically Dependent Children’s Program, there are a handful of other lists of interest in the state.

Enrollment is capped and some people can wait years to be considered for services.

“We waited about seven years before we got the medical dependent children’s program,” said Karla Auten – who has a son with cerebral palsy.

In January, he will be 21 and will have to move on to another program with another round of paperwork.

“I think the long-term commitment to really do more to reduce those interest lists or waiting lists is badly needed in our state,” Murphree said.

In the last legislative session, Texas lawmakers approved additional spending of $ 76.9 million to serve more people on Medicaid interest lists.

“We appreciate it, but it looks like we can do more right now both to bring people into the services and also to improve the services,” said Murphree.

The latest available data on state home and community services comes from a 2018 survey by the Kaiser Family Foundation. He reports that Texas has the longest waiver waiting lists in the country.

As of 2021, Texas has just over 170,000 people on six interest lists.

Texas HHSC told NBC 5 Responds that some people on interest lists may not be eligible for benefits. He also indicated that some people waiting for a list of interest may receive services through other exemptions or programs.

“It’s a shame that the state of Texas, which is a state that I love, I’m a sixth generation Texan, is ranked among the worst states in the country to live in if you have a disability,” said Monica Peters . .

“I have a big extended family in the state and we’re thinking about moving to another state just because we could offer him better there,” Peters said. “Services are available for her in other states. They managed to do it. There’s no reason Texas can’t do it.

“We are concerned, not only for our daughter, but for anyone who is trying to get services to help their child be as developed and as healthy as possible,” said Greg Peters.

The pandemic has also worsened the shortage of home health workers. Some families tell NBC 5 Responds that even when they go off an interest list and are approved for home care, finding someone to provide the care is a challenge.

Disability rights advocates call this “the invisible waiting list”.

NBC 5 Responds continues to cover this issue and will bring this story to you next week.

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