AUSTIN, Texas — State officials are proposing changes to a Medicaid program aimed at helping medically fragile children remain at home, but the plan is drawing concern from parents, advocates and health care providers who say it may exclude families in need.
The Texas Health and Human Services Commission (HHSC) has introduced a draft rule that would modify access to the Medically Dependent Children Program (MDCP), which provides home- and community-based services for children with complex medical conditions.
During a public hearing Thursday, state officials said the proposed changes are designed to help children avoid being placed in institutions such as nursing facilities. The rule would create clearer guidelines for so-called “nursing facility diversion slots,” allowing some children to qualify for services without first entering a facility.
Dr. Glen Medellin, a pediatrician specializing in palliative care, said the change is a step forward but warned that parts of the proposal could limit access. He expressed concern that stricter eligibility requirements may exclude children with serious conditions who do not meet narrowly defined criteria.
Currently, many families access MDCP through a lengthy interest list, with advocates noting that wait times can stretch up to two decades due to limited availability. Other children qualify only after being admitted to a nursing facility — a pathway critics say can make it harder for families to transition children back home.
Under the draft rule, children seeking a diversion slot would need to meet at least two of eight specified high-acuity medical conditions, such as congenital heart disease or 24-hour oxygen dependence. Advocates argue that this approach may overlook children with equally serious but less clearly categorized conditions, including those undergoing cancer treatment or living with complex overlapping needs.
Michael Clark of The Arc of Texas said the criteria could leave some families without support until their situations become critical. He emphasized that crises often stem not only from medical conditions but also from caregiver burnout, loss of in-home nursing and other external pressures.
Parents who spoke at the hearing also raised concerns about how the rule would be applied. Some said the proposed language lacks clarity and may reduce flexibility for doctors to determine whether a child is medically fragile.
Renée Lombardo, an HHSC official, said the proposal does not change overall eligibility for MDCP but instead outlines rules specifically for diversion slots. She added that the goal is to provide clearer guidance for providers while reducing disruptions to children’s lives.
Still, families and advocates are urging the state to revise the proposal to broaden access and preserve clinical judgment. HHSC is accepting public comments on the draft rule through April 3.
