Today marks a monumental moment for families of children with disabilities. The American Academy of Pediatrics (AAP) has officially endorsed the concept of paid family caregiving for children with special health care needs (CYSHCN). This advocacy step could transform the lives of millions of families across the United States.
For decades, families of children with medical complexity (CMC) have been the backbone of the disability care system—providing around 1.5 billion hours of unpaid care per year to keep kids out of costly institutional settings. Despite their unwavering dedication, these caregivers have often faced financial instability, burnout, and emotional strain. Now, the AAP is recognizing this extraordinary effort and calling for systemic change.
Why This Matters
The AAP’s endorsement is a critical acknowledgment of the challenges families face due to severe workforce shortages in home care services. Many children with disabilities depend on private-duty nursing, personal care, or respite care—services that are often unavailable due to inadequate payment rates and recruitment challenges. Parents are left to fill their children’s federally mandated care hours, sometimes at great personal and financial cost.
The AAP’s advocacy guide outlines pathways for states to implement paid family caregiving programs, including Medicaid waivers and legislative changes. The benefits of these programs are profound, ranging from improved health outcomes for children to greater financial stability for families.
Key Benefits of Paid Family Caregiving
The AAP highlights several advantages of compensating family caregivers, including:
Continuity of Care: Family members know the child’s needs better than outside providers, ensuring stable and high-quality care.
Enhanced Family Stability: Hiring parents for personal care aide and other jobs can ease financial pressures, allowing families to focus on their child’s well-being without the constant fear of economic hardship.
Skill Development: Caregivers often acquire medical skills that can support their child’s transition to adult care and potentially contribute to the broader care workforce.
A Path Forward
During the COVID-19 pandemic, many states temporarily allowed family caregivers to be paid for their work, showcasing the feasibility and value of hiring parents to fill direct care job openings. With the AAP’s guidance, states now have a blueprint to make these policies permanent. The organization emphasizes that participation should remain optional, ensuring families retain the choice of traditional services if preferred.
This endorsement also underscores the importance of setting fair reimbursement rates, avoiding caregiver burnout, and integrating respite care into paid caregiving models.
A Win for Advocacy
This milestone is a testament to the tireless efforts of advocates, families, and professionals who have fought for recognition of the invaluable work performed by parent caregivers. For families like mine, this is more than just an endorsement statement—it’s a validation of the love, labor, and sacrifices we pour into our children every day.
The journey ahead will require collaboration at the state level to implement these programs effectively. But today, we celebrate this incredible step forward, knowing that the AAP’s support brings us closer to a future where family caregivers are empowered and supported, not penalized and derided, for caring for their children with disabilities.
Let’s continue to advocate and ensure this vision becomes a reality in every state. Together, we can build a system that values and supports the caregivers who make community-based care possible.
For more details on the new American Association of Pediatrics guidance, click below: