ADVOCACY GOAL 2
Supporting Families as Caregivers
Families are the backbone of care. Many people with intellectual and developmental disabilities (IDD) live with family caregivers who provide daily, often complex support—usually without pay. Let’s update New York policy so trained family members can be recognized, supported, and compensated for the care they already provide.
The Current Situation
- Most people with IDD, receiving OPWDD HCBS Waiver services live with family caregivers, many providing full-time care, without compensation
- Lack of recognition and support leads to burnout, service disruptions, and in some cases unnecessary institutional placement.
- Families face emotional and financial strain, even as they deliver essential care at home.
Our Proposal – Support the Family Caregiver Bill (bill number pending)
- Creates a Complex Care Assistant Services Program in Medicaid so trained, certified family members can provide covered private duty nursing and other complex home care tasks (e.g., medication administration, skilled nursing tasks).
- Authorizes Medicaid coverage for those certified family-provided services in the home.
- Aligns with consumer-directed models while expanding options for people with IDD to reeve needed care at home and in their communities.
How it Works
- Clear Standards: The state defines certification requirements and covered tasks for family caregivers in this role.
- Training & Oversight: The Medicaid director sets training/certification; certified family caregivers are employed by a licensed agency and complete in‑person examination and training.
- Budget Guardrails: The program stays within existing Medicaid reimbursement limits (no added state costs) and would require a federal plan amendment to implement.
We must recognize family caregivers as essential partners and support them so people with IDD can thrive at home.
Expected Results
- Stronger family stability by valuing and compensating family‑based care.
- Cost‑effective care and less reliance on institutional or private nursing when family support is appropriate.
- Better continuity and quality of care with consistent, trusted support at home.
- Reduced caregiver burnout, preventing disruptions and avoidable crises.
- A more inclusive long‑term care system that recognizes families as partners.
Frequently Asked Questions
No. If passed, this bill will allow trained, certified family members—employed by a licensed agency—to perform defined tasks, with standards and training set by the state’s Medicaid program.
The proposal is structured to stay within existing Medicaid reimbursement limits; implementation would require a federal plan amendment.
Examples include private duty nursing services and certain complex home care tasks like medication administration, as defined in regulation and training standards.