Texas wants to make it easier for certain children to access services through one of its Medicaid programs – but parents, advocates and medical providers worry the new rule is too narrow.
The Texas Health and Human Services Commission, or HHSC, published a draft rule amendment that would affect one of the ways Texas families gain access to Medicaid services through the Medically Dependent Children Program, or MDCP, which provides home- and community-based health services to children with medically complex needs. The state said during a public hearing Thursday the change would help children avoid placement in an institution – like a nursing facility.
However, Dr. Glen Medellin, a board-certified pediatrician who specializes in palliative medicine, said he was worried the rule may limit providers.
"This has been long overdue and helps our children quite significantly," he said. "I do have some concerns though about the additional changes in the policy for criteria."
What does the draft rule do?
Most people access MDCP through an interest list, which keeps track of which families are waiting for services. Advocates said due to limited availability families can wait 20 years to receive services.
Other pathways involve nursing facility placement.
"We know through data and through our experience that once a child goes into a nursing facility it is very difficult for them to come out," said Rona Statman, program director for the non-profit, Every Child. "The longer that they stay in the harder it is to get them out."
Under the change, said Renée Lombardo, HHSC's long-term supports and services manager, some children would be able to access MDCP services without first going to a nursing home.
The rule establishes clinical criteria to determine if a child is eligible for what's known as a nursing facility diversion slot – which allows children who qualify to forego facility placement ahead of getting services. Lombardo said the slots can reduce the emotional and logistical burdens on families.
"Children can remain in familiar environments, maintain family routines, and avoid disruptions to schooling and medical relationships," she said. "The primary goal is to add rules guiding the diversion slot process to help HHSC and providers understand what is and is not permitted."
HHSC is accepting public comments on the draft rule until April 3.
Concern about eligibility criteria for slots
Parents, advocates and medical providers said the eligibility criteria for the diversion slots could cause problems.
The rule includes a list of eight complex needs or issues, like congenital heart disease, certain feeding tubes, "24-hour per day oxygen dependence" or hospice placement. Children must match two of those to qualify for a diversion slot.
"I am concerned that we drop some criteria such as immunosuppression," Medellin said. "Because these include our children with cancer, stem cell transplant, that really are quite sick and should not be going into a nursing home and often can't be waiting long periods of time."
In addition, Medellin said in the past, doctors were able to indicate that a child was medically fragile, even if they didn't meet specific criteria. That information would be submitted to HHSC to be reviewed by the State Office Physician.
"I'm worried that the way these rules are written is taking that away," Medellin said.
Advocates shared Medellin's concern.
Michael Clark, deputy director of public policy and advocacy at the Arc of Texas, said requiring children to meet "at least two very high acuity medical conditions" may leave families in crisis and risk of institutionalization.
"Medically fragile children often have complex overlapping needs that do not fit neatly into rigid categories," he said. "As written, the eligibility criteria is narrow and risks excluding children who are clearly at risk of nursing facility admission, but do not meet multiple highly specific conditions."
HHSC says the slots are for "crisis diversion," which Clark said should include more factors than just a narrow list of medical conditions.
"Families may experience crisis due to a range of factors, including limited caregiver capacity, loss of private duty nursing, and inability to safely sustain care at home or other criteria," he said. "Many families would not qualify until their situation has deteriorated to an extreme and potentially dangerous point rather than receiving services early enough to prevent institutionalization."
Lack of clarity
The state said the rule was written in "plain" and understandable language to make it easier for the public to comment on, but several parents raised concerns about what the rule means in practice.
Hallie Nesbitt lives in McKinney and cares for her son. Callahan Nesbitt has a chronic, neurological condition that Hallie said results in frequent seizures, heart defects and other medical challenges.
Through tears, Hallie Nesbitt said she and her husband paid for nursing out of pocket because of gaps in insurance and "the difficult hoops of the current MDCP program." Her family was denied from the program for two years.
"It has broken us and we have done everything right," Nesbitt said. "The most chilling part of this process wasn't the denial itself, it was the realization that the system wasn't even looking at us. During our appeal call, the agent began reading off of medical records that weren't even Callahan's. They were declaring a denial based on a stranger's file."
Nesbitt said she's afraid the narrower criteria would make it more difficult for families.
Renée Lombardo clarified the criteria for the MDCP program will not change. She said the rule establishes the criteria specifically for the nursing facility diversion slots.
However, parents and advocates continued to ask for the rule to be redrafted.
Natalia Nagy, another McKinney resident, is the mother of twins with complex medical needs. She said she's concerned that the proposal is still unclear.
"I urge the state to revise its proposal to ensure that it expands access, preserves clinical judgment, opens up the qualifications for all families and children, and removes the structural barriers that force families into unsafe care settings," Nagy said.
Abigail Ruhman is KERA's health reporter. Got a tip? Email Abigail at aruhman@kera.org.
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