The State of New Hampshire began the Katie Beckett program on a simple premise: children whose medical needs are severe enough to qualify for institutional care deserves the chance to grow up at home instead of in a hospital, with the skilled nursing and aide support that would make that possible. That promise is now being broken.
At least eight families enrolled in the Home Care for Children with Severe Disabilities program, known as the Katie Beckett Program, and its adult successor, Aid to the Permanently and Totally Disabled (APTD), are now saying the managed care organizations of New Hampshire Healthy Families, AmeriHealth Caritas New Hampshire and WellSense Health Plan have cut private duty nursing and licensed nursing assistant hours, often with little clinical justification and little or no notice. A courageous, self-described group of “Medical Moms” contacted me on July 22 and I continue to hear from parents around the state in dire need of assistance.
The pattern of cuts is clear and consistent. A four-year-old with a progressive neurological degenerative disorder, uncontrolled seizures and g-tube dependency saw their nurse assistant’s hours reduced from 60 to 45 to 21 over six months, despite an increase in required care.
A medically fragile toddler, only two years old, has a compromised airway, seizure disorder, G-tube dependency and metabolic instability, any one of which can deteriorate into a life-threatening event within minutes and without warning. His nursing care cut from 60 hours per week to zero.
A child with mitochondrial disease, uncontrolled seizures and g-tube dependency had nursing hours reduced from 60 to zero in one action, later partially restored to 40 only after his mother spoke out.
A 20-year-old with a progressive neurodegenerative disease, recently hospitalized for a month after an aspiration event, had their private duty nursing eliminated with less than 24 hours of notice.
And in one household caring for seven adopted and foster children, two separate managed care organizations independently reduced authorized hours for multiple children in the same family.
The consequences of these egregious actions are neither hypothetical nor without monetary cost to the families and state. One family has watched their nonverbal son, who cannot report his own symptoms, hospitalized six times in three months, including one crisis in which his blood sugar dropped to dangerously low levels and was caught only because a trained nurse was present to recognize it — and then had his nursing hours cut anyway. For now, all six hospitalizations were covered in full by the primary caregiver’s private insurance but if nursing hours are cut below the level a physician has ordered, the state goes from paying nothing to paying everything.
These reductions implicate specific, enforceable standards. New Hampshire Medicaid rules require 30 days advance notice before reducing or terminating a previously authorized service. Federal regulation requires that any such notice give a specific reason for the decision and the clinical criteria applied, as well as inform the family of their right to appeal. It further requires that authorized services continue unchanged while a timely appeal is pending, rather than being cut off before a decision is reached.
Early and Periodic Screening, Diagnostic, and Treatment is a mandatory Medicaid benefit for children, requiring that medically necessary care be provided in whatever amount, duration and scope is needed to sustain a child’s current level of functioning and correct or better their condition — a standard that cannot lawfully be replaced by a fixed administrative ceiling. Based on the cases documented to date, New Hampshire’s managed care organizations do not appear to be consistently meeting these obligations.
Fortunately, many families whose services were cut are seeing their authorizations restored. In response to these cases, the New Hampshire Medicaid Director and Medical Director have demanded the managed care organizations to provide documentation on changes made to recipients with enhanced oversight by the state agency of the 160 families receiving these services. Unfortunately, restoration on paper has not solved the underlying problem: a statewide staffing shortage means many of these families are losing the very providers who cared for their children for years, even as their hours are formally reinstated.
I appreciate the actions being taken by our State Medicaid Director and Medical Director to restore services to these families while demanding a review of the managed care organizations’ modifications affecting these vulnerable children, but there is still much left to be done to protect and fully restore this safety net.
The following steps must be taken to protect New Hampshire’s most vulnerable: An immediate moratorium on further reductions to private duty nursing, licensed nursing assistant and home health aid hours for Katie Beckett and APTD recipients must be put in place, until the Department of Health and Human Services has verified that each managed care organization’s authorization practices comply with federal, state, and medical necessity requirements.
An accelerated independent investigation, conducted outside the managed care organizations, into every authorization reduction made to Katie Beckett and APTD recipients, including individuals who transitioned from Katie Beckett to APTD at 18, whose medical needs did not change at that boundary.
Immediate confirmation of the health and safety of every child and young adult whose hours have been reduced, to ensure no medically fragile individuals are currently going without physician ordered care.
Pursuit of liquidated damages against any managed care organization found to have violated its contractual obligations. New Hampshire’s contracts with its Medicaid managed care organizations include liquidated damages provisions meant to compensate the state, and by extension its residents, for harm caused by the contractor’s failure to meet its obligations. Those provisions exist for situations precisely like this one, and they should be enforced.
The Katie Beckett Program began with a simple premise: every child deserves to grow up in a home, not a hospital bed. We owe it to these children and to their families to fulfill this premise.
Janet Stevens is an executive Councilor who represents the majority of Rockingham County.