One in five children in the United States has a special health care need requiring more than routine health services, and one in four adults report having a disability (LPFCH.org n.d.). As 70 million adults and 14.5 million children in the United States have a disability, the population impacted by issues in the aging out process and in the health care system more broadly is far from insignificant. Despite these numbers, disability-related grants represent just 2 percent of total philanthropic giving and are primarily directed towards services and supports that seek to fix or cure disabilities and perpetuate the ableist assumption that people with disabilities are unable to make decisions about their own care (Lawrence et al. 2023). Prioritizing disabled voices is important for the future of health philanthropy.

The Lucile Packard Foundation for Children’s Health (LPFCH) and the WITH Foundation (WITH) share a commitment to addressing the needs of individuals with disabilities and special health care needs, and to disability-inclusive philanthropy that engages individuals with lived experience throughout our grantmaking processes and projects. These values led us to jointly fund The National Alliance to Advance Adolescent Health (NAAAH) effort to foster effective transitions from pediatric to adult health care.

To investigate the complexities of this issue and develop recommendations, the NAAAH spent two years studying the experiences of youth and young adults (YYA) with disabilities when they age out of four public programs: Medicaid, the Children’s Health Insurance Program (CHIP), the Supplemental Security Income (SSI) program, and Title V Programs for Children and Youth with Special Health Care Needs (CYSHCN). To understand the unique challenges facing Black young adults with disabilities, the NAAAH led case studies in five states that had not expanded Medicaid and had large populations of Black young adults. This work is an example of practicing disability-inclusive philanthropy and offers actionable guidance for how foundations can promote disability inclusion at their own organizations.

Challenges and Recommendations for Prioritizing Disabled Voices

The NAAAH conducted its research from July 2022 to April 2024, with guidance from a National Advisory Committee. The findings in the NAAAH’s national report include challenges and inequities affecting young adults with disabilities for each of the programs studied. Common issues that leave this population uninsured include lower income eligibility standards for adults compared to children, states lacking Medicaid expansion, and the burdensome application process for programs (McManus et al. 2024).

Read the full article about prioritizing disabled voices at Grantmakers in Health.