In Connecticut, a child with a life-limiting medical condition can wait five years for access to essential home care — physical therapy, nursing, the support that keeps them out of emergency rooms and hospitals and at home with their families. Over 300 families are on that waitlist right now.

Connecticut is the only state in New England with a cap on enrollment in the Katie Beckett waiver program. Every other New England state has figured this out. Connecticut has not.

A pediatric palliative care nurse recently described walking into a hospital room to find a family in tears — not from grief, but from joy. After nearly five years on the waitlist, they had finally gotten the call. Five years. For care their child needed from the start.

Connecticut lawmakers passed a bill in 2025 requiring the Department of Social Services to develop a plan to eliminate the waitlist. A year later, over 300 families are still waiting. Little progress has been made.

Eliminating the waitlist would cost approximately $8 million — just 0.03% of Connecticut's $27 billion state budget. Colorado runs a similar program with no enrollment cap and saves $15,000 to $20,000 per child per year in avoided emergency visits and hospitalizations. Connecticut can afford this. It is choosing not to act.

We're calling on Governor Ned Lamont and the Connecticut Department of Social Services to eliminate the Katie Beckett waiver waitlist immediately and stop asking the state's most vulnerable families to bear a burden they never chose.