“There are no caregivers” | Home health care lacking for children with special needs

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JOHNSON CITY, Tenn. (WJHL) Home health care is not the easiest to come by, especially for families of children with special needs.

Some living in the Tri-Cities have been searching for years, to no avail.

“We’ve tried everything,” said Tracy Arnold, mother of a 10-year-old child with physical and developmental disabilities. “It’s just not there, it’s not available, there are no caregivers.”

EllaRey Arnold, 10, needs a home health caregiver. The Arnold family’s insurance provider TennCare, the state of Tennessee’s Medicaid program, agrees they should have 30 hours of medical care per week. Arnold says that care has been approved as medically necessary for her daughter.

“But because we can’t find providers, TennCare wants to pass the buck and say ‘we’ve approved it, it’s not our fault you can’t find it,'” Arnold argued.

One of the growing issues: EllaRey is growing. Her mother struggles to lift her in and out of her wheelchair, a task that a home health nurse could take on.

“I feel like my daughter is less than, kind of not important because she does have a disability,” Arnold said.

Arnold believes with no local caregivers available through TennCare’s approved agencies in the Tri-Cities region, something has to change.

“If we could just get a stipend to pay our own provider 10, 15 dollars and hour we could do that and we would have our needs met, but that is not an option,” said Arnold.

When asked about these issues over email TennCare representatives referred News Channel 11 to existing programs like the Katie Beckett Waiver, designed to help children with special needs. But for many families like the Arnolds, it does not apply.

“We were told we were disqualified because she already has TennCare,” said Arnold.

Arnold said EllaRey would have to lose her TennCare coverage in order to qualify for Katie Beckett, and a gap in coverage is not something they can afford or risk.

“We just couldn’t pay out of pocket for those co-pays with the hopes that we would get on Katie Beckett and not be stuck on the waiting list for years,” said Arnold.

“If you have a child that has a lot of healthcare needs, it is almost impossible to get the care that they need,” said Michele Johnson, the Executive Director of the Tennessee Justice Center. She has worked in health care advocacy for 27 years.

Johnson and the TJC represent hundreds of families like the Arnolds in their fight for care.

“For families who already have this enormous burden, to have the unpredictability and to have to constantly fight to just ensure their kids aren’t suffering, ensuring their kids are safe, it isn’t fair and we can do better,” said Johnson.

It has been a battle the Arnolds have fought for years, they say they are one of many families left waiting.

“I think people just feel like it’s a lost cause. We need it but we can’t get it,” said Arnold.

Litigation

TJC filed a lawsuit on behalf of Tennesseans to stop what they call “the harm” caused by a block grant Medicaid model.

Johnson says in the final days of the Trump administration, Tennessee was given the green light to approve block grants for Medicaid, or TennCare, coverage. President Donald Trump originally tried to introduce block grant Medicaid coverage nationally; it failed in Congress.

According to the Center on Budget and Policy Priorities, “Block-granting these programs would strip away the federal commitment to help vulnerable individuals and families who are eligible for these programs when they need them. Fixed annual funding would render the programs unable to automatically respond to increased need, as they do today. As need increases, states would have to cut eligibility or benefits or establish waiting lists to stay within capped funding.”

The TJC agrees block granting TennCare is harmful, and says its is an overreach by the Trump administration.

“It’s illegal. Medicaid is an act that Congress passed. Can an administrative agency undo what Congress did? Actually, no. They can’t. They can’t waive the core purpose of the act,” said Johnson.

TJC’s current lawsuit is essentially suing the Biden Administration, asking them to reverse the Trump era decision.

Johnson says these block grants will impact every Medicaid recipient in Tennessee and sets up incentives to cut the programs, not figure out how to make it work better.

Their lawsuit is in D.C. Circuit Court, representing 30 families who are all asking the court to overturn the block grant for Tennessee. Johnson says this will help Tennessee families like the Arnolds, who are named as plaintiff in the lawsuit, fight for better care.

A copy of the complaint can be accessed here.

Tennessee’s Attorney General Herbert H. Slatery III has filed a motion to intervene in the lawsuit designed to challenge Tennessee’s Medicaid Block Grant waiver amendment. Click here to read the announcement from their office issued on May 20th, 2021.

TennCare response

This is the full statement provided to News Channel 11 on behalf of TennCare by a resprentative on May 27 in regards to these concerns:

“Tennessee offers several Medicaid home and community based services programs—that provide in-home services and supports, including most recently a new Katie Beckett program targeted to children with complex medical needs and disabilities.

In nearly all (and soon to be all) of those programs, including the Katie Beckett program, people have the ability to directly select and employ the workers who deliver certain types of services (a model sometimes referred to as “self-direction” or “consumer direction”).  There are limitations for family caregivers living with the person in the home—to ensure that we are supplementing and not supplanting natural supports.  Beyond that, there is broad flexibility to hire and pay family caregivers, friends, or others the person chooses to hire, so long as program requirements are met.

Tennessee also has a benefit called a “Family Caregiver Stipend” available to families caring for their children at home in our program for children and adults with intellectual and developmental disabilities—Employment and Community First CHOICES.”

The Arnold family says none of these existing and available options are applicable to their situation as they continue to seek home health care for their daughter.

Copyright 2021 Nexstar Media Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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