Every day, millions of parents and spouses are doing the hardest, most important work there is: taking care of children with medical needs, special needs, or spouses who require daily support. They do it 7 days a week, 24 hours a day, 365 days a year, without a single day off. And yet, most of them are not paid for their work.

We are calling on federal and state governments to recognize family caregivers as the essential workers they are and provide tax-free, biweekly compensation for the care they already provide.

 
Why This Matters
Parents and spouses providing full-time care cannot maintain a traditional 8-hour workday outside the home. Special needs children require constant supervision, therapy, medical administration, and emotional support, and many do not qualify for daycare or after-school programs. Families often lack extended family or community support, meaning all responsibilities fall to the parent or spouse.

Caregiving includes:

Administering medications, handling medical equipment, and responding to emergencies
Assisting with daily living tasks like bathing, dressing, toileting, and feeding
Implementing physical, occupational, speech, and behavioral therapies multiple times per day
Scheduling and transporting loved ones to doctors, therapists, schools, and social services

Managing household responsibilities goes far beyond basic chores. Family caregivers are running an entire household while simultaneously providing constant, individualized care. This includes cooking specialized meals to meet dietary or medical needs, cleaning to maintain a safe and sanitary environment, doing laundry multiple times per day for soiled clothes or medical linens, managing bills, and budgeting carefully to stretch every dollar for therapies, equipment, and daily necessities.

Caregivers also take on advocacy work at a professional level, acting as case managers for their loved ones. This includes attending IEP meetings, coordinating with multiple schools, filing extensive forms and paperwork, scheduling and transporting to medical appointments, managing therapies at home, and communicating with insurance companies, social workers, and medical agencies. They are essentially the hub of the entire care network, responsible for ensuring that every service is delivered properly, on time, and in compliance with regulations.

On top of all this, caregivers provide emotional and behavioral support around the clock. They manage meltdowns, anxiety, sensory overload, and emotional crises, often with little guidance or backup. Every day can involve navigating intense stress, frustration, and unpredictable challenges while maintaining a calm, safe, and nurturing environment.

Yet most state programs only see the child or adult under care every 3 months, or sometimes once per year. Meanwhile, the family caregiver is responsible every single day of the year, often without breaks, respite, or external support. They handle everything from medical emergencies in the middle of the night to therapy exercises during the day, while simultaneously maintaining the household and managing finances — all without compensation, recognition, or guaranteed support.

The Financial Hardship
Families providing full-time care face incredible financial strain:

Out-of-pocket costs for therapy, medical equipment, sensory tools, transportation, and adaptive devices
SSI for children or spouses often disqualifies the family from food assistance programs
Daycare or external caregiving is impossible or too expensive
Many families live paycheck to paycheck, balancing household expenses, therapies, medical bills, and daily necessities
Current programs like Medicaid waivers or respite care rarely provide support directly to parents or spouses, instead often funding external caregivers. These programs are limited, inconsistent, and have long waiting lists that can take years.

 
The Solution: Paid Family Caregiving
Every parent and spouse providing full-time care should receive:

Tax-free, biweekly pay to match their daily responsibilities
Compensation based on actual care hours — including medical tasks, therapy, supervision, household duties, and crisis response
Elimination of waiting lists — pay should start immediately after a care assessment
Recognition as full-time employment with eligibility for all families providing care
 
States Leading the Way
Some states already recognize the value of family caregiving, though with limitations:

California – In-Home Supportive Services (IHSS)

Pays parents and spouses to care for loved ones
Hourly pay: $19–$25
Limited by Medi-Cal eligibility and approved care plan hours
New York – Consumer Directed Personal Assistance Program (CDPAP)

Allows family members as caregivers
Hourly pay: $18–$22
Administrative delays and program gaps often leave families waiting
Texas – Community First Choice (CFC) & STAR+PLUS

Allows family caregivers through self-directed Medicaid programs
Hourly pay: $14–$18
Some spouses or parents of minors are excluded
Florida – Medicaid Managed Care Long-Term Care & CDC+

Consumer-directed options for family caregivers
Hourly pay: $15–$19
Eligibility rules vary, and support may not cover full needs
Illinois & Colorado

Medicaid waivers allow family caregivers
Hourly pay: $15–$22
Programs may not cover all care needs or all family members
Other States with Paid Family Caregiving Programs

Alaska, Arkansas, Connecticut, Hawaii, Iowa, Kansas, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, New Hampshire, New Jersey, North Carolina, North Dakota, Ohio, Oregon, South Carolina, South Dakota, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, Wyoming
Even in these states, families face waiting lists, low hours, and administrative hurdles. No program consistently compensates all parents and spouses providing 24/7 care, leaving millions of families struggling.
 
Why We Need Change Nationwide
We are asking all states to:

Recognize parents and spouses providing full-time care as paid caregivers
Provide tax-free, biweekly payments reflecting actual hours worked
Eliminate waiting lists and arbitrary eligibility restrictions
Include all families caring for children with medical or special needs, and spouses with medical conditions
Ensure families can maintain full-time care without sacrificing their own financial stability
Families should not have to choose between working outside the home and leaving their loved ones without essential care. They should not have to live paycheck to paycheck, skipping meals or going into debt, just to provide the care that programs claim to support.

“A stay-at-home parent is not just ' at home.’ They are a full-time nurse administering medications, managing medical equipment, and monitoring vital signs. They are a therapist implementing daily exercises and therapies, a teacher guiding learning and developmental growth, a case manager coordinating appointments, paperwork, and insurance, and a household CEO cooking meals, cleaning, doing laundry, budgeting, and paying bills. They are an emotional anchor, providing constant support through meltdowns, anxiety, sensory overload, and emotional crises. They run the family schedule, advocate for every need, research treatments and therapies, and make split-second decisions in emergencies—all while loving their child or spouse unconditionally. Most programs only see the person under care every few months, yet the caregiver is responsible every single day, often without breaks, respite, or financial support, shouldering the full weight of care, responsibility, and love 24/7.”

 
Your Voice Matters
By signing this petition, you are joining a nationwide call to:

Pay parents and spouses for the life-saving, 24/7 work they already do
Provide financial stability and dignity for families caring for those who cannot care for themselves
Support children and spouses with special needs, ensuring they get the care and supervision they deserve
We need federal and state action now. Every family doing the work deserves recognition, support, and pay.

Sign today. Share widely. Every parent and spouse providing full-time care deserves to be paid.