Petition to Amend Pennsylvania Medicaid and Waiver Service Definitions to Recognize Elopement Risk as Medically Necessary

We, the undersigned parents, caregivers, professionals, and advocates for individuals with autism and developmental disabilities, respectfully petition the Pennsylvania Department of Human Services (DHS) and the Office of Developmental Programs (ODP) to revise current waiver service definitions to explicitly recognize elopement risk as a medically necessary condition warranting home health aide, behavioral support, or direct care supervision services.

Elopement (wandering or fleeing from safe settings) is one of the most dangerous behaviors associated with autism and developmental disabilities.

Nearly 50% of children with autism have engaged in elopement behaviors.
Of those, 65% have had close calls with traffic and 24% were at risk of drowning (Anderson et al., Pediatrics, 2012).
Pennsylvania families have experienced repeated elopement-related tragedies, including preventable deaths of children with autism who wandered from homes, schools, or care settings.

Despite this evidence, Pennsylvania Medicaid and waiver programs currently exclude elopement risk from the definition of “medical necessity.” This results in denials of critical home health aide services that could prevent serious injury or death.

The current waiver language narrowly defines “medical necessity” as treatment required to diagnose or treat a medical condition, omitting life-threatening behavioral safety risks. This omission leaves families without coverage for medically required supervision — even when the individual’s physician or behavioral health provider documents the risk.

We respectfully request that the Pennsylvania Department of Human Services (DHS) and the Office of Developmental Programs (ODP) take the following actions:

Amend Medicaid Waiver service definitions to explicitly include “lack of safety awareness and elopement risk” under criteria for medical necessity.

Permit coverage of home health aide or direct support services for children and adults whose elopement risk places them at risk of serious injury or death.
Issue guidance to Medicaid Managed Care Organizations (MCOs) clarifying that elopement supervision can qualify as medically necessary when tied to a diagnosed condition.
Collaborate with legislators and advocacy organizations to ensure funding and service accessibility for affected families.

This policy update would:

Prevent deaths and medical emergencies resulting from elopement.

Support caregivers who currently bear full responsibility for constant supervision.
Reduce taxpayer costs by avoiding hospitalizations, police interventions, and institutional placements.
Align Pennsylvania’s Medicaid policy with scientific research and ethical standards of care.

Our children’s lives depend on this change.

 Please help us keep our children safe.

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