Parents of autistic children in New York State provide intensive, daily care that includes behavioral support, medical supervision, therapy coordination, safety monitoring, and crisis management.

Many of these children require 24-hour supervision for elopement risk, self-injury, communication barriers, and sensory regulation. Parents often leave the workforce entirely to provide this care.

Meanwhile, Medicaid-funded programs administered by the New York State Department of Health and the Office for People With Developmental Disabilities compensate third-party caregivers under programs such as the Consumer Directed Personal Assistance Program.

However, parents of minor children are generally excluded from being paid for providing the same level of care.

This policy:

Forces families into financial hardship

Contributes to caregiver burnout

Worsens workforce shortages

Ignores the expertise and commitment of parents

We call on New York State to:

Allow parents of minor autistic children to be paid caregivers under Medicaid-funded programs.

Establish eligibility criteria with proper documentation and care plans.

Ensure compensation parity with third-party aides.

Create safeguards while prioritizing family-centered care.

Parents are already doing this work — unpaid. New York must recognize and support the families who keep their children safe every day.