Benefits for Children with Special Health Care Needs (CSHCN)

Children (and youths) with special health care needs (CSHCN, or CYSHCN) can receive services from several federal health programs. To be eligible for CSHCN services, children must require health care and related services beyond those generally required by other children.

In Title V of the Social Security Act, CSHCN (and CYSHCN) refer to children (or children and youths) who have or are at increased risk of getting a "chronic physical, developmental, behavioral, or emotional condition" like:

• autism
• cystic fibrosis
• Down syndrome
• HIV/AIDS
• cerebral palsy
• attention deficit hyperactivity disorder (ADHD), and
• depression.

Federal law doesn't definitively list conditions that qualify a child as a CSHCN or CYSHCN. Instead, any child who meets the broad definition above, which includes most children who receive SSI disability benefits, can qualify.

In 2022, the United States Department of Health and Human Services (HHS) found that 20.8% of U.S. children (ages 0-17) qualify as CSHCN.

Title V provides funding to the states to help cover the costs of programs with the goal of improving health care access for children and youths with special health care needs (43 U.S.C. § 701-713). The states run the CSHCN programs, so the help available to children and youths with special health care needs varies from state to state.

CSHCN Benefits and Maternal Child Health Bureau Agencies

Title V of the Social Security Act also established the federal Maternal and Child Health Bureau (MCHB), an agency tasked with:

• promoting the health of mothers and infants
• reducing infant mortality
• overseeing the provision of rehabilitation services to children who receive SSI, and
• encouraging the development of family-centered, community-based services for CSHCN.

Every state has an MCHB agency, usually in its public health department. The federal MCHB distributes block grants to the state MCHB agencies to administer programs, and 30% of the federal money must be spent on programs to serve CYSHCN.

These state agencies use federal grants and state funds to provide services for more than 1.6 million children with special health care needs. States generally use their Title V grants to cover services not paid for by Medicaid or CHIP (more on this below).

Every state and U.S. territory has a hotline to answer questions about its MCHB agency. To find out whether your child might be eligible for any MCH program services in your state, contact your state hotline.

Medicaid and CHIP Eligibility for CSHCN

The health care needs of a CSHCN child can be a financial drain on their families. Fortunately, many children and youths with special health care needs can get help through Medicaid and the Children's Health Insurance Program (CHIP).

Medicaid Eligibility for Children With Special Health Needs

Children with Special Health Care Needs can qualify for Medicaid in a few ways. First, children in families with very low incomes can qualify for Medicaid, whether or not they have special health care needs. Second, in most states (but not in all states), SSI recipients—including children getting SSI disability—are automatically eligible for Medicaid.

In addition, Medicaid waiver services are available to higher-income children who need institutional levels of care, depending on the state they live in. States typically limit waiver services to certain individuals, often based on their diagnoses.

For example, Nebraska has a Medicaid waiver program that offers behavioral intervention services to children with developmental disabilities (like autism). Colorado has an "extensive support waiver" program offering a variety of services to children with developmental disabilities.

CSHCN children whose families are over the income limit for Medicaid coverage in their state can still qualify for Medicaid in some circumstances. A few states offer Medicaid to children with severe disabilities regardless of their family income.

Children with special health care needs can also qualify for Medicaid if their families spend so much on their care that their adjusted income allows them to qualify as "medically needy." And children with special health care needs who are removed from their homes and placed in foster homes or other settings are automatically eligible for Medicaid, regardless of family income.

CHIP Eligibility for CYSCHN

Children whose family incomes exceed the Medicaid eligibility limit might still qualify for another federal program, the Children's Health Insurance Program (CHIP). Title XXI of the Social Security Act established the program and gave states more discretion with their CHIP than their Medicaid programs. CHIP coverage and benefits vary greatly from state to state and usually cover fewer services than Medicaid.

The Affordable Care Act (ACA) set the minimum income eligibility level for children in Medicaid programs to 133% of the federal poverty level (FPL). Many states have set higher income limits, so they vary from the federal minimum up to 319% FPL. In most states, the income eligibility levels for their CHIP programs are higher, ranging from 170% to 400% FPL, with most states capping services at 200-300% FPL.

To find out whether your child qualifies for Medicaid or CHIP in your state, contact your state's Medicaid agency. You can find your state's agency using the interactive map at InsureKidsNow.gov.

Children's Benefits After the ACA and COVID

A few provisions in the Affordable Care Act (ACA) benefit children with special health care needs. By raising the income limit and making more children eligible for Medicaid, the ACA enabled many children in CHIP programs to enroll in Medicaid, giving them access to more benefits like early health screenings through EPSDT programs.

In addition, because of the ACA, children who age out of the foster care system can now keep their Medicaid coverage until they turn 26. And the ACA also offers increased federal funding to states to encourage the development of programs that might help children with special health care needs.

For example, states can opt to create a system of "health homes" to coordinate care so that people with chronic conditions can receive comprehensive, wraparound case management services. Children and youths with special health care needs often benefit in states with the health home option because they have better access and can organize all their care needs.

Early in the COVID-19 pandemic, the Centers for Medicare & Medicaid Services (CMS) temporarily waived various Medicaid and CHIP requirements. That meant the states stopped reviewing continuing eligibility for existing Medicaid and CHIP beneficiaries. The easing of these rules helped children, including those with special health care needs, to keep their health coverage during the pandemic.

State Medicaid programs restarted eligibility reviews in 2023 and resumed denying coverage to current Medicaid recipients (and new applicants found ineligible for health coverage under the program). But those denied coverage have the right to appeal. Here's what to do if your Medicaid coverage is denied.