In partnership, the Georgetown University Center for Children and Families and Family Voices, —a national nonprofit led by families and friends of children and youth with special health care needs (CYSHCN) and disabilities—are sharing perspectives from families whose children have special health care needs and disabilities and are covered by Medicaid.1
In a survey conducted by Family Voices in January 2025, parents were asked to describe: “Why Medicaid is important to you and your family.” The 78 respondents were either a parent, caregiver or family member of a child or youth (age 0-21) with special health care needs or disabilities. The family responses below were extracted from the survey results to represent the general types of experiences described. The partner organizations are grateful to families for sharing their perspectives, lived experiences, and invaluable knowledge.
Half of CYSHCN are Covered by Medicaid
Children and Youth with Special Health Care Needs (CYSHCN) are defined as children who have chronic physical, developmental, behavioral, or emotional conditions who need health and related services of a type or amount beyond that required by children generally.2 One in five children under age 18 have special health care needs, with nearly half being covered by Medicaid and/or the Children’s Health Insurance Program (CHIP). 3 4
Many CYSHCN live with serious conditions such as asthma, autism, cerebral palsy, epilepsy, genetic disorders, sickle cell disease, and Type 1 diabetes. Most require specialized health services such as medications, therapies (e.g., physical, occupational, or speech-language-hearing) and care of specialty physicians. Medicaid-eligible children with disabilities have coverage for a full range of health care and long-term services and supports.
For Families of CYSHCN Medicaid is a Lifeline
While parents and other family caregivers shoulder much of the burden for care of CYSHCN, by definition, they need extra support from health professionals and often need in-home services. Medicaid covers services that help to keep children with complex and chronic needs living at home with their families, in their communities. It helps families avoid medical debt and meet other basic needs. Medicaid coverage helps to ensure that CYSHCN and their families are able to thrive.
A parent from South Carolina tells it this way:
I am writing as a parent of a child with disabilities, adopted through the South Carolina Department of Social Services, to express the critical importance of preserving and expanding Medicaid for children and adults with disabilities. Medicaid is not just a lifeline; it is a pathway for individuals with disabilities to live fuller, more independent lives while reducing long-term costs for our society.
Medicaid is not just a safety net for individuals with disabilities—it’s a foundation for building independence. Cutting Medicaid would force families to forgo necessary care, push more people out of the workforce to become full-time caregivers, and shift costs onto other strained welfare systems. Expanding Medicaid funding, on the other hand, ensures that more individuals with disabilities can achieve their potential and contribute meaningfully to our communities.”
A family from Montana shared this perspective:
Having Medicaid for my medically complex daughter is allowing our family to finally start digging out of the debt we have been in for the last 10 years, since her birth. It is a lifesaver for families like mine, and will ensure she can continue to receive high-quality healthcare.
For a family in Wisconsin, Medicaid coverage started after a year of medical bills.
Medicaid is crucial for accessing care and therapy that would otherwise be unavailable for my special needs child! In his first year of life, prior to getting approved for Medicaid, we depleted our savings paying for just his medical care.
The need for Medicaid coverage of CYSHCN often begins at birth, when a baby is born too small (low birthweight), too early (preterm), or with a congenital condition.
A parent in Maryland faced challenges with twins.
I was laid off while pregnant and could not afford COBRA coverage. I had the unexpected blessing of twins. Then the unexpected challenge of raising 2 children with special needs. Medicaid made so much possible, and they are thriving now thanks to early intervention. We are no longer on Medicaid, but I am thankful for it and know firsthand how impactful it is in health outcomes and poverty reduction.
Medicaid Helps CYSHCN Get Care When They Need It
Medicaid coverage helps to ensure that CYSHCN and disabilities are able to survive, achieve optimal health and grow into more self-sufficient adults. Medicaid’s child-specific benefit, known as the Early and Periodic Screening, Diagnostic and Treatment or EPSDT benefit, requires that children be covered for services when medically necessary to improve and/or maintain their health.5
For Tiffany and her family, Medicaid fills the gap in employer-based coverage.
Medicaid is important to my family because my son got diagnosed with a rare disease at age 2, leaving me unable to work full time; therefore, having private health insurance is not an option for my family. It allows my child to get the medical services he needs. If we didn’t have Medicaid he wouldn’t get the proper hospital/ follow up care he needs.
A family in North Dakota sees Medicaid’s role in greater independence for their son.
Medicaid allowed our son to receive necessary therapy, occupational therapy, physical therapy, and speech therapy even after our primary insurance would not pay. These therapies have helped him learn new skills to become and independent adult.
Mackensie has a son with special health care needs whose care is complex.
Medicaid is important for my family in many ways. Medicaid has funded feeding tube supplies, therapy, counseling, mentoring and respite care for my 11-year-old son. He has been considered disabled since he was 1 year old and has been receiving services weekly since.
A family in Wisconsin described the negative alternatives.
Without Medicaid, my 5-year-old wouldn’t be able to attend school. [Due to medical costs] We as a family would lose our home and also not be able to afford to rent.
One family in South Carolina described how Medicaid helped them avoid medical debt.
Without Medicaid, we would be left paying for thousands of dollars in speech and physical therapy for my child who has a syndrome. He has thrived because he has had therapy to help him grow and develop as closely as possible to his peers. Without this funding, we would have had to sacrifice our own healthcare, gone into medical debt, sought as much help as possible for paying for that medical debt. Because of Medicaid, my son is able to be in a classroom with his peers rather than special education, and he is treated as if he is capable.
Alison, a mother of a child with a hereditary condition, reported on the role of Medicaid.
Because of Medicaid, my daughter with Angelman Syndrome was able to receive physical therapy that helped her learn to walk. Our family never would have been able to afford several years of weekly physical therapy for her without Medicaid.
Medicaid Can Reduce Health Care Costs and Disabilities
Because it provides coverage for an array of services and supports, Medicaid can help cut health costs for families and the health care system overall. More importantly, it can help to avoid worsening conditions and reduce the degree of disability or functional loss that children might otherwise experience. The result is more success in school, in daily activities, and in future adult life.
Courtney reported on how Medicaid contributed to school attendance and success for her child.
Having Medicaid means that my daughter has access to healthcare without hesitation. We no longer have to consider our outstanding medical bills and try to hold off seeing a doctor or taking her to the hospital just a little longer. As a result, she is the healthiest she has ever been! She is back in public school, competing in archery tournaments and robotics, making straight A’s and looking at colleges. Without Medicaid she was essentially bedridden about 4-5 days a week.
As described by a parent from Illinois, Medicaid can help to preserve function and reduce disability.
Without Medicaid my family would not be able to afford the many surgeries and medications required to save and preserve my son’s vision.
Beth described the situation before and after Medicaid coverage.
Without Medicaid, I would not be able to afford the daily medication my child needs. Before this medication my child had regular hospitalizations and was sick often.
For a family in Florida, Medicaid has improved function and long-term success for her daughter.
My 15 years old daughter has Down Syndrome and since she was born, she has medical needs, she needs lots of therapies and her health and development is at risk if Medicaid is taken from us. It is crucial for a family like us to have access to Medicaid, we could not afford all the treatments and therapies that she needs. With Medicaid, my daughter has a great future ahead, please don’t take the dream away from us.
Selina believes Medicaid-financed treatments are reducing symptoms and helping her children thrive.
Medicaid is important to my family because without it my two young children would not be able to receive the support they need… [they] go to several therapies each week. It has made them thrive and help give them the support they need to make their lives easier and more fulfilling…. Medicaid has not only been extremely helpful but a blessing for my family. Without it my children would not be progressing and would not have a fair chance at life.
For another family in South Carolina Medicaid helped with a diagnosis and successful treatment in the early years.
Medicaid is important to me and my family because it helped us get an accurate diagnosis for my 3-year-old daughter. This helped her access services and programs she would not have qualified for otherwise. Since then, she’s went from non-verbal to speaking, reading, counting, etc. Her progress would have been stifled without Medicaid.
Medicaid Keeps CYSHCN Living At Home and In Their Community
Medicaid is the primary source of financing for home and community-based services (HCBS), which help to ensure that children can live at home with their families rather than living in more costly institutions. This began with the bipartisan Katie Beckett Medicaid option, signed into law in 1981 by President Ronald Reagan. By 2024, 43 states covered some children with significant disabilities living at home under the “Katie Beckett” state plan option or a comparable waiver.6
For Gina’s family, Medicaid’s HCBS program that provides long-term services and supports has made difference.
Medicaid & the [HCBS] program have been life changing for my family. Without it’s support my child would have ended up in a residential program. Instead, because of [home and community-based services] support, she is home and thriving.
A family in Colorado describes how Medicaid helps keep their children at home, in their care.
Medicaid allows me and my husband to live comfortably and care for our two special needs kids. With the HCBS waivers, only one of us has to work and the kids’ behavior has gotten better because of it. Without the waivers from Medicaid, one or both of our kids would have ended up in residential institutions.
Cassie reported on the role of Medicaid in helping her son live at home.
It has allowed us to be able to care for our child at home to thrive versus staying in hospital for months. It has also allowed us [access to] programs that assist him by way of paying for assistive devices and coverage of specialty services, food, and equipment.
Another family in Wisconsin reported:
Medicaid is important to my family because my son has intense special needs and relies on Katie Beckett coverage. He gets necessary equipment & supplies, as well as respite funding and therapies covered.
A mother in the District of Columbia with two sons with special needs depends on Medicaid.
I am a mother of two … boys who are currently accessing Medicaid services through our DC Katie Beckett program. Without this waiver and access to Medicaid services, it will be unaffordable for my family to meet my children’s many medical needs, negatively impacting their care, development, and quality of life. As a single mother living in one of the most expensive cities in the country, I would not be able to work and maintain a household without respite care, many therapies, and medications without access to the Medicaid waiver.
For Meghan’s daughter, Medicaid has meant survival.
…Medicaid is important to my 7-year-old daughter with special needs, because it has allowed her to receive multiple therapies, be seen by countless specialists, and receive equipment that without [Katie Beckett program] we would not have been able to afford to give to her. Without it, we could not afford the daily medical supplies that she requires to survive!
A parent from Illinois shared her family’s story in brief.
Medicaid allowed my daughter to live at home with the assistance of home nurses until she passed away at age 11. Without Medicaid, she would have been institutionalized in a hospital due to the complexity of her medical needs. Instead, she was able to spend her short time here on earth surrounded by her family and friends, living in a community where she was loved and cherished.
- Family Voices, available here. ↩︎
- Maternal and Child Health Bureau, Children and Youth with Special Health Care Needs, National Survey of Children’s Health Data Brief, Health Care Resources and Services Administration, June 2022. Available here. ↩︎
- Child and Adolescent Health Measurement Initiative, 2022-2023 National Survey of Children’s Health (NSCH) data query, Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Available here. ↩︎
- E. Williams and MB. Musumeci, Children with Special Health Care Needs: Coverage, Affordability, and HCBS Access, Issue Brief, KFF, October 4, 2021. Available here. ↩︎
- K. Whitener, EPSDT: A Primer on Medicaid’s Pediatric Benefit, Georgetown University Center for Children and Families, March 4, 2016. Available here. ↩︎
- KFF, “Medicaid Eligibility for Katie Beckett Children with Significant Disabilities and Special Income Rule” (2024), available here. ↩︎
Additional resource: Wei W. Understanding Medicaid Proposed Changes: Key Terms & Phrases. Family Voices. Available at: https://familyvoices.org/understanding-medicaid-proposed-changes-key-terms-phrases/