Madhavi Kuthanur, Program Associate, Lucile Packard Foundation for Children’s Health
Ryan Easterly, Executive Director, WITH Foundation
Holly Henry, Program Director, Lucile Packard Foundation for Children’s Health
Kristen Rogers, Assistant Communications Director, Lucile Packard Foundation for Children’s Health
“It was a very new experience and a very confusing experience. I had to get a lot of new documents.… The government should think about people with special complications and assist more if they have these conditions. Instead, we have to find a way for ourselves.”
—A Black young adult and self-advocate with cerebral palsy and intellectual and developmental disabilities (ID/DD)
This young adult is sharing his experience of needing to reapply for Medicaid, expressing frustration that he did not receive advance notice of his expiring Medicaid as this information was mistakenly sent to his dad. Three months after reapplying, he was still waiting for approval, all while living with a condition that requires him to use a wheelchair and access expensive medications and therapies (Ilango et al. 2024). His story captures the confusion, feelings of abandonment, and consequences that many young adults with disabilities experience when aging out of Medicaid and other essential public programs. As low-income youth with disabilities transition into adulthood, they are at risk of losing coverage, disability income supports, and continuity of care (McManus et al. 2024).
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).
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: Access to Public Program Services for Young Adults with Disabilities After Age 18
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).
The NAAAH developed recommendations for Congress and other stakeholders to improve the four programs. The recommendations fall under categories such as program and policy reform, transition supports, and outreach. Implementing these recommendations can help ensure continuous coverage, income stability, and care for YYA with disabilities aging out of public programs (McManus et al. 2024).
The Effects of Multiple Marginalization Experienced by Black Young Adults with ID/DD
Key informant interviews with national disability and advocacy organizations unearthed common challenges specific to Black young adults with ID/DD. Systemic racism was the most reported challenge and appeared to be at the root of other inequities that were identified. Additionally, subpopulations of Black young adults with ID/DD, such as individuals who identify as LGBTQIA+ and those in the foster care system, experienced greater challenges when aging out of public programs (McManus et al. 2024). The five-state case study further highlighted the perspectives of YYA and incorporated lived expertise into the work. André Marcel Harris, MSW, led the key informant interviews with Black young adults with developmental disabilities. In a recent webinar, André shared that he lives with sickle cell disease and reflected on how the stories of interviewees resonated with his journey transitioning from pediatric to adult health care (Got Transition 2024).
Making Disability Inclusion a Funding Priority
For LPFCH and WITH, our work with the NAAAH has underlined the importance of improving the aging out process and strengthened our commitment to supporting the continuum of care and coverage for people with disabilities. The NAAAH’s findings also spotlighted the differences in the experiences of subpopulations of young adults with disabilities based on race, gender identity, housing status, etc.
We are calling on our colleagues in health philanthropy to invest in issues that matter to people with disabilities and prioritize the meaningful inclusion of people with lived experience across all your grantmaking processes and projects. We share the steps below as a starting point for embracing disability-inclusive philanthropy.
1. Ensure that people with disabilities and/or their loved ones/families are valued partners.
When considering proposals, ask the following: Do they discuss disability as part of the communities they serve? Do they have leadership and authentic engagement of people with disabilities within their board, senior leadership, and/or staff? In their budget(s), are there allocations for accommodations and/or access needs?
WITH embraces, intentionally demonstrates, and gives preference to organizations that benefit from the expertise and leadership of those most impacted. WITH values the leadership and expertise of adults with ID/DD. WITH also supports the compensation of experts and leaders with ID/DD in ways that support parity between adults with ID/DD and their non-disabled peers.
In that same vein, LPFCH believes that families are experts in the care of their children and have direct experience navigating our complex and fragmented health care system. The foundation centers family engagement by requiring grantees to partner with family members of CYSHCN in all grant-funded activities and to compensate family partners for their time and expertise at the same level as other expert partners.
2. Consider whether a project addresses the needs and experiences of people with intersecting identities.
Children, youth, and adults with special health care needs are not monoliths. Race/ethnicity, language, income level, gender identity, and geography are a few key factors that shape one’s experience of navigating the health care system. At LPFCH, we fund projects that address multiple marginalization and ableism in pediatric health care to ensure that we are transforming health systems to work better for children and families with the greatest needs.
At WITH, we support organizations that celebrate adults with ID/DD that may also hold other historically excluded identities based on race, gender identity, sexual orientation, national origin, veteran status, and/or linguistic and communication diversity. By supporting health care systems and health care education that are both culturally competent and embracing a cultural humility approach, we are fostering better health care service delivery for all, including people with disabilities.
3. Remember that children with disabilities grow into adults with disabilities. Fund work that is conscious of the life course.
The findings shared in the NAAAH’s report underline that continuity of coverage, care, and supports from childhood to adulthood is crucial for the health and well-being of people with disabilities and special health care needs. The stories of young adults with disabilities reveal the confusion and stress that occur during the transition to adulthood, particularly for those who may not have a caregiver guiding the process. LPFCH and WITH call for greater investment in the life course of people with disabilities, so children can get the care they need and grow into thriving adults without disruptions in their health care or other supports.
As health philanthropy leaders, this guidance reflects our core values. We urge our fellow funders to expand their understanding of disability-inclusive philanthropy by participating in organizations like the Disability & Philanthropy Forum. We encourage you to put this approach into action so we can work toward fulfilling a shared vision of improving health systems and health care access for all.
Ilango, Samhita, Schmidt, Annie, McManus, Margaret, and White, Patience. A Five State Case Study: Black Youth and Young Adults with Disabilities Aging Out of Medicaid, CHIP, SSI, and Title V Programs. Washington, DC: The National Alliance to Advance Adolescent Health, July 2024.
McManus, Margaret, Ilango, Samhita, White, Patience, and Schmidt, Annie. National Report: Youth and Young Adults with Disabilities Aging Out of Medicaid, CHIP, SSI, and Title V Programs – Barriers, Inequities, and Recommendations. Washington, DC: The National Alliance to Advance Adolescent Health, July 2024.
Lucile Packard Foundation for Children’s Health. “Program for Children and Youth with Special Health Care Needs (CYSHCN).”
Lawrence, Steven and Harris, Emily J. Foundation Giving for Disability: Priorities and Trends. Amherst, Massachusetts: Proteus Fund, January 2023.
Got Transition. “Aging Out of Public Programs: Webinar Recording.” May 2024.