AN ACT CONCERNING A COMPASSIONATE MEDICAID WAIVER PROGRAM FOR CHILDREN WITH RARE, PROGRESSIVE OR NEURODEGENERATIVE DISORDERS.

SB 802 would create a Medicaid waiver program to provide critical services for up to 50 children in Connecticut diagnosed with rare, progressive, or neurodegenerative disorders that are often fatal within three years of diagnosis. The bill requires the state's Social Services Commissioner to seek federal approval for this program under existing Medicaid rules, ensuring coverage for life-sustaining care and support services for eligible children aged birth to 18. It directly affects families of children with these specific, severe conditions who currently face significant barriers to accessing necessary medical and support services. The program aims to address urgent needs by expanding access to equitable, life-sustaining care through a state-federal partnership.