Opposition to 56-hour Personal Assistance Cap fir Individuals with Complex Disabilities
I am writing to express my strong opposition to the proposed 56-hour weekly limit (soft cap) on consumer-directed Personal Assistance hours for the waiver program.
My son has an Intellectual/Developmental Disability (IDD) and is blind. He currently requires, and has been medically approved for, 94 attendant hours and 18 companion hours per week. His dual-diagnosis means his disabilities amplify one another. Because of his blindness, he cannot perceive environmental hazards or navigate his surroundings safely. Because of his IDD, he lacks the cognitive safety awareness to protect himself. He requires continuous, 1-on-1, line-of-sight supervision and hands-on, hand-over-hand assistance for basic everyday survival, hygiene, and mobility.
While DMAS states this is a "soft cap" with exceptions, placing a standard 56-hour threshold creates an unnecessary, terrifying administrative burden on families who are already overwhelmed. For a child who is blind and has IDD, 56 hours a week is completely inadequate. Gaps in his care would directly jeopardize his physical safety and threaten his ability to be safely cared for in our home.
Furthermore, as the state transitions away from Services Facilitation toward Support Brokers, families are facing immense systemic instability. Forcing vulnerable individuals to simultaneously fight to justify their existing, vital care hours during a massive structural overhaul is unjust.
I urge DMAS to reconsider this 56-hour cap and to automatically exempt individuals with severe, intersecting, and co-occurring physical and cognitive disabilities—such as visual impairment combined with IDD—from these restrictive limits.
