Policy & Legislative Solutions
A New Approach to Caregivers: Compensation
The Problem with the Status Quo
New York's healthcare system depends on millions of unpaid family caregivers — yet the law treats them as invisible. They are not counted in healthcare workforce data, not compensated through Medicaid unless they clear bureaucratic hurdles, and not protected when they sacrifice careers and savings to care for a loved one.
The Family and Medical Leave Act provides job protection, but no pay. Medicaid's consumer-directed programs offer limited compensation, but only when the caregiver is not also the patient's healthcare proxy — a rule that punishes the most dedicated caregivers. Irrevocable trusts lock families into arrangements made decades before illness strikes, with no mechanism to redirect assets toward the person who actually shows up.
These are not isolated policy gaps. They are a systemic failure to value care work — and they fall hardest on women, immigrants, and communities of color who make up the majority of family caregivers in New York.
"Caregivers are — and have been — part of the infrastructure of illness, death and dying yet we are not counted as such. That must change."
— Caregivers United for Equity
Our Policy Proposals
Four concrete legislative priorities that would meaningfully improve the lives of family caregivers across New York.
Compensate Caregivers Through Medicaid Reform
Remove the prohibition on healthcare proxies serving as paid caregivers. A family member who manages medications, coordinates specialist appointments, and provides round-the-clock care is performing skilled healthcare work — they should be compensated for it, regardless of their legal relationship to the patient.
Reform Irrevocable Trust Law
Current law allows irrevocable trusts to lock in inheritance arrangements decades before death — with no provision for the reality that the actual caregiver may not be who was anticipated. We propose legislation allowing courts to modify irrevocable trust distributions when a family member has provided substantial unpaid caregiving, ensuring that those who show up are not financially penalized for doing so.
Create a Caregiver Tax Credit
New York should establish a refundable state income tax credit for unpaid family caregivers who provide a minimum number of caregiving hours per year. This credit would partially offset lost wages, out-of-pocket medical expenses, and the long-term retirement savings impact of leaving the workforce to provide care.
Count Caregivers in the Healthcare System
State health agencies should be required to collect data on unpaid family caregivers as part of healthcare workforce reporting. Recognizing caregivers as part of the system is the first step toward designing policy that supports them — and toward making the economic case for investment in caregiver compensation.
Help Us Drive This Conversation
Legislative change starts with people who have lived it. Share your caregiving story, join our network, or support our advocacy work.