Children with Special Health Care Needs (CSHCN) can receive services from several different federal health programs. CSHCN is a term used in Title V of the Social Security Act to mean children who have, or are at increased risk of getting, a "chronic physical, developmental, behavioral, or emotional condition." To be eligible for services, children must require health care and related services beyond that generally required by children.
Examples of conditions that CSHCN might have include autism, cystic fibrosis, Down syndrome, HIV/AIDS, cerebral palsy, attention deficit disorder, and depression. There is no definitive list in federal law of conditions that qualify a child as a CSHCN. Instead, any child who meets the broad definition above, which will include most children who receive disability benefit through SSI, can qualify. A 2010 survey found that 15% of U.S. children qualify as CSHCN (based on the most recent data available).
The programs available to CSHCN vary from state to state.
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 a MCHB agency, usually in its department of public health. 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 CSHCN. In 2012, MCHB agencies served 3,184,715 children with special health care needs. In general, states use their Title V grants to pay for services that are not paid for by Medicaid or SCHIP (see 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 the State Children's Health Insurance Program (SCHIP) are other public programs that serve children with special health care needs.
Children with Special Health Care Needs can qualify for Medicaid in several ways. First, children in families with very low incomes can qualify for Medicaid whether they have any special health care needs or not. Second, in most states (but not all states), SSI recipients are automatically eligible for Medicaid.
In addition, Medicaid-waivered services are available to higher-income children who need institutional levels of care, depending on the state the child lives in. States typically limit waivered 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 autism. Colorado has a program offering a variety of services to children with developmental disabilities.
CSHCN 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. CSHCN 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.”
Finally, CSHCN who have been removed from their homes and placed in foster homes or other settings are automatically eligible for Medicaid regardless of family income.
Early Periodic Screening, Diagnosis, and Treatment (EPSDT) is a program offering expanded benefits to children who are Medicaid-eligible. EPSDT requires states to provide periodic well child screenings of all Medicaid-eligible children and to pay for any treatment that is medically necessary for the child, regardless of whether the treatment is included in its Medicaid plan. EPSDT is important to all children, including CSHCN, because of its expanded coverage beyond the basic state Medicaid package.
Children whose families’ income exceeds the Medicaid eligibility limit may still qualify for another federal program, the State Children’s Health Insurance Program (SCHIP). SCHIP was established by Title XXI of the Social Security Act. States have more discretion with their SCHIP than with their Medicaid programs, and so the coverage and benefits vary greatly from state to state. SCHIP usually covers fewer services than Medicaid.
In general, most states have set the income eligibility level for children in Medicaid programs around 100% of the federal poverty level (FPL) and eligibility levels for their CHIP programs starting at the Medicaid cutoff level and going from 160 - 400% FPL, with most states capping services at 200-300% FPL.
To find out whether your child qualifies for Medicaid or CHIP, contact your state’s Medicaid agency. You can find a link to your state’s agency here.
A few provisions in the Affordable Care Act (ACA) benefit Children with Special Health Care Needs. Most importantly, the ACA raised the Medicaid eligibility level for most individuals to 133% FPL. In many states, that means that children who were in CHIP programs were able to enroll in Medicaid programs instead, and gained access to more benefits like EPSDT services. In addition, because of the ACA, children who age out of the foster care system are now able to keep their Medicaid coverage until they turn 26.
The ACA also offers increased federal funding to states to encourage the development of programs that might help CSHCN. 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. CSHCN are likely to benefit in states that choose to offer the health home option because they will be able to get better access and organize all of their care needs.