Medicaid is the sole source of coverage for 36 percent of children with special health care needs, according to a Kaiser Family Foundation (KFF) Issue Brief. Public insurance, like Medicaid, is important for many children with special health care needs because the Medicaid program covers medical and long-term care services that are either not covered or subject to limited coverage through private insurance. The proposed restructuring of Medicaid financing would likely impose limits on the scope of benefits available to all Medicaid beneficiaries. The KFF believes that Medicaid reform should carefully evaluate the potential impact on children with special health care needs.
Special Health Care Needs
HHS reports that nearly 20 percent of all U.S. children under 18 years of age have special health care needs. Additionally, one in five U.S. families has a child with a special health care need. HHS defines special health care needs as applying to children who “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.” Special health care needs stem from conditions including Down syndrome, cerebral palsy, depression, anxiety, and autism. Children falling under the definition have multiple and varied needs. For example nearly 70 percent of children with special needs have difficulty with bodily functions such as breathing, swallowing, or chronic pain. Children with special health care needs often have conditions which require nursing, therapy, and mental health counseling services.
The majority (73 percent) of children with special health care needs live in low or middle-income families. This means that 73 percent of children with special health care needs live in families with incomes below 400 percent of the federal poverty level. Of the 11.2 million children with special health care needs, 59 percent are white, 16 percent are black, 17 percent are Hispanic or Latino, and 8 percent fall into other racial or ethnic categories. Forty-one percent of children with special health care needs are between 12 and 17 years old, 39 percent are between six and 11 years old, and 21 percent are between zero and five years old.
The Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) required states’ Medicaid programs to cover children in families with incomes up to 138 percent of the federal poverty level. However, all states expanded financial eligibility for children above that level. As of January 2017, the median eligibility for Medicaid and CHIP children is 255 percent of the FPL. States may also make children who receive federal Supplemental Security Income (SSI) benefits eligible for Medicaid. Such children reside in poor families and are disabled in a way that severely limits their ability to function at home, school, and in the community.
Regardless of whether a state chooses to cover such services for adults, children are eligible for Medicaid’s Early and Periodic Screening Diagnostic and Treatment (EPSDT) benefit, which includes regular medical, vision, hearing, and dental screenings as well as other services necessary to “correct or ameliorate” physical or mental health conditions. Additionally, because private insurance is designed to meet the health care needs of a generally healthy population, Medicaid can fill the gap to provide care related to more intensive and chronic needs.
Medicaid provides a board scope of services and coverage to children with special health care needs. For many families, Medicaid serves as an important source of insurance and a means to fill gaps presented by inadequate private insurance. As a result, lawmakers should be cautious when evaluating Medicaid reforms to consider the impact such restructuring could have on children with special health care needs.