Priority 2.
Supporting Families as Caregivers
- 61% of people with intellectual and developmental disabilities receiving HCBS Waiver Services live with family caregivers, who often provide full-time care without compensation
- This lack of support leads to caregiver burnout, service disruptions, and in many cases, unnecessary institutional placement.
- The burden on families strains both emotional well-being and financial stability, weakening family units and driving up public care costs.
We urge lawmakers, families, and advocates to support Senate Bill S.4462-B (Mayer) and its Assembly companion A.464-B (Steck), which authorize parents and guardians to serve as paid, certified complex care assistants for individuals with IDD. This proposal:
- Recognizes family caregivers as official providers under New York’s long-term care system, aligning policy with the Complex Care Assistant framework.
- Authorizes Medicaid coverage for certified family members to provide complex home care, such as medication administration and skilled nursing tasks.
- Aligns state policy with existing consumer-directed home care programs while extending care options for individuals with IDD.
- Defines “family member” (parent, guardian, sibling, etc.) and “complex care assistant” certification requirements to perform ADLs, IADLs, medication administration, tracheostomy care, ventilator care, and more.
- Medicaid director will establish certification/training and set reimbursement rates for services rendered.
- Certified family caregivers will be employed by a licensed agency and undergo in-person examination and training.
- The structure ensures spending stays within existing Medicaid reimbursement limits for no additional state costs, and requires a federal plan amendment to implement.
Reference source: NYSenate.gov, billtrack50.com, caseforinclusion.org/publications/data-snapshots, and legiscan.com
- Strengthened family stability by valuing and compensating family-based care.
- Cost-effective care model that reduces reliance on institutional and private nursing services.
- Enhanced continuity and quality of care, since loved ones provide consistent, trusted support at home.
- Reduced caregiver burnout, preventing service disruptions and avoiding crises.
- A more inclusive long-term care system that formally recognizes families as essential frontline providers.
Supporting S.4462-B/A.464-B means treating family caregivers with the respect and support they deserve—empowering families to care for their loved ones with dignity, reducing unnecessary institutionalization, and strengthening community-based support for people with disabilities.
Your voice matters. Contact your legislators and urge them to support S.4462-B/A.464-B, because family care is the future of compassionate, community-based disability support.
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