Several families in North Texas tell NBC 5 Responds they qualify for private duty nursing hours to help care for their medically fragile children but a shortage in nurses has made it nearly impossible to find help at home. Many qualify under a benefit provided by Medicaid to help families cover the costs for services—like round-the-clock care only a registered nurse can provide.
But the pandemic highlighted major staffing shortages of registered nurses with COVID-19 front and center—moving all qualified staff to the hardest hit places.
Families like the Parkers of The Colony tell NBC 5 Responds their 4-year-old daughter, Dallas, qualifies for 24/7 care. She has several medical conditions, including Hashimoto’s and Graves’ disease. She spent much of her first four years in and out of a hospital
“We have to make sure that somebody is constantly watching Dallas with meds and everything else,” said Dallas’ father, Jeff Parker.
In July, Parker ended up at Cook Children’s Health Care System for a relapse. In September, doctors cleared her to go home. Parker qualifies for 168 hours of private duty nursing per week, but the family learned their nurse is no longer available.
“We were actually supposed to be discharged the day we found out. We told the hospital and they said, ‘Well, you have nothing now, so we can't let you go,’” said Parker.
Brian and Julia Broadbent’s daughter, Emma, also needs round-the-clock care.
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“She’s actually the first human on Earth to be diagnosed with any disease caused by a long non-coding RNA. So, she is basically the rarest of the rare,” said Brian Broadbent.
This summer, Emma spent weeks in the hospital while the family searched for home health care.
“It was much better before COVID, and then it's just kind of gotten progressively worse through the pandemic,” said Broadbent.
“They get stuck there because then they don't have nurses to come home to,” said Kristen Robison, board president for the Texas Association for Home Care and Hospice. Robison also works with Angels of Care – a home health agency.
“We have probably close to 500 kids that are not getting all of their hours served and that's just one agency. There are hundreds of agencies across the state that have waiting lists and hours that need to be staffed just like we do,” said Robison.
Like Karla Auten’s son who has cerebral palsy.
“We waited for about seven years to get the Medically Dependent Children's Program,” said Auten.
Once in the program, the Auten’s qualified for 53 hours of private duty nurse care that they don’t always get.
“With the emergence of COVID, we've really had difficulty keeping nursing and we've actually had to change nursing agencies,” said Auten.
“There's not enough people. It's really difficult to find anybody,” said North Richland Hills resident Katie Stevens.
Her son has a rare heart defect and she, too, can’t find help.
“Currently, we qualify for 60 [hours]. We're probably getting about 30 and after this week, it will be none. We've had a lot of trouble filling slots,” said Stevens.
And there’s the Cheevers family in Houston. Four children, all requiring special care, but unable to find nurses to fully staff the hours they qualify for.
Data from the Texas Workforce Commission shows that as of November 12, 2021 there are 21,505 open jobs in Texas for registered nurses.
And even before the pandemic hit, a 2018 study highlighted a shortage of more than 27,000 registered nurses in Texas.
“The Medicaid reimbursement rates that agencies get right now are far less than anything that the hospitals are paying their nurses,” said Robison.
In September, Brian Broadbent joined their fight in Austin during the special session where they requested $412 million of the state’s $16 billion in federal COVID-19 funding.
Less than half was awarded, $178 million, which will be split between other interest groups like assisted living facilities and home health agencies through requested grants.
The state told NBC 5 Responds the last time the commission set an hourly rate for private duty nursing was 2019.
Groups like Disability Rights Texas see families spend years waiting for benefits—only to continue waiting.
“Even though you've finally come off of the waiting list, known as an interest list, to get a program that's supposed to provide services, now you're on a waiting list that's invisible to get somebody to show up,” said Susan Murphree, a senior policy specialist at Disability Rights Texas.
Meanwhile, children like Dallas Parker wait. In all, Dallas spent an extra 52 days in the hospital while searching for help until the family was finally able to go home.
And just a few weeks ago, the Broadbent family’s daughter, Emma, was also able to go home.
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