Families of Medically Fragile Children Frustrated by Pandemic's Impact

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

A North Texas family reached out to NBC 5 Responds while waiting for their child to be evaluated for benefits. Their spot on the list froze during much of the pandemic and their wait to be evaluated for benefits grew longer.

Disability rights advocates said it doesn’t have to be this way.

One family’s story

At five years old, Hailey Peters loves to look at books, swing in her backyard and snuggle with her family.

“She has such a positive attitude, and she takes everything that comes at her and does just fine with it,” said Hailey’s dad, Greg Peters.

Hailey has a rare genetic condition. Her parents, Greg and Monica Peters explain she can’t talk or walk or feed herself.

She also has difficult-to-control seizures among other serious medical conditions that require 24/7 care. While both Greg and Monica work full-time, their private insurance doesn’t cover everything Hailey needs - including multiple weekly physical, occupational 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 that. I just don't know them personally,” said Monica Peters. “We work really, really hard and we can't possibly afford that, but Medicaid would pay for that.”

The Peters hope to benefit from a Medicaid waiver program for medically dependent children. It provides wrap-around services so kids can stay in their homes with their families, instead of a nursing facility.

It’s a way for families who make too much to qualify for regular Medicaid to pay for care that insurance doesn’t cover.

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

Interest lists for Medicaid waivers can take years to clear

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

The Peters said they signed Hailey up in 2018 and followed her movement up the interest list.

“The expectation was that her name would come up as being eligible for services in March, maybe April, at the latest, of 2020,” said Monica Peters.

In the spring of 2020, the Peters said Hailey’s place in line stopped moving and she remained number 214 on the interest list well into 2021.

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

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

Texas HHSC also said COVID-19 made assessments more challenging, but it’s since resolved those issues and began releasing slots on the Medically Dependent Children's Program interest list in October.

Since then, Hailey’s name has come off the list and her family said they are now working through the paperwork and evaluations to learn if Hailey will be approved for benefits.

Pandemic spotlights challenges

“I don't think we're climbing out of that yet. Even though some enrollments are happening, being able to access the caregiver to provide the services is more difficult,” said Susan Murphree, senior policy specialist, Disability Rights Texas.

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

Along with the Medically Dependent Children's Program, there are a handle of other interest lists in the state.

Enrollments are capped and some people may wait years before they’re considered for services.

“We waited for about seven years to get the Medically Dependent Children's Program,” said Karla Auten – who has a son with cerebral palsy.

In January, he turns 21 years old and will have to transition to another program with another round of paperwork.

“I think the long-term commitment to really doing more to reduce these interest lists or waiting lists is a big need in our state,” said Murphree.

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

“We appreciate it, but it seems like we might be able to do more right now both to get people into services and also to improve services,” said Murphree.

The latest available data for states’ home and community-based services comes from a 2018 Kaiser Family Foundation survey. It reports Texas has the longest waiver waiting lists in the country.

In 2021, Texas counts just over 170,000 people across six interest lists.

Texas HHSC told NBC 5 Responds, some people on the interest lists may not actually be eligible for benefits. It also said some people waiting on an interest list may be receiving services through other waivers or programs.

“It is a shame that the State of Texas, which is a state that I love, I'm a sixth-generation Texan, is ranked one of the worst states in the country to live in if you have disabilities,” said Monica Peters.

“I have a massive extended family in the state and we're thinking about moving to a different state just because we could provide better for her there,” said Peters. “There are services available for her in other states. They managed to do it. There's no reason Texas can't do it.”

“We're concerned, not just for our daughter, but for all of those out there who are trying to get services to help their child be the most developed and healthy that they can be,” said Greg Peters.

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

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

NBC 5 Responds is continuing to cover this issue and will bring you that story next week.

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