In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities.
An estimated 11.2 million children, or 15% of all children in the U.S., have special health care needs, based on the most recent data available from 2009-2010. Their needs result from a range of conditions, such as Down syndrome, cerebral palsy, and autism. These children may require services such as nursing care to live safely at home, therapies to address developmental delays, and mental health counseling. This issue brief describes the role that Medicaid plays for children with special health care needs.
Medicaid, CHIP, and other public health insurance programs cover nearly half (44%) of children with special health care needs (Figure 1). Public insurance, including Medicaid, is the sole source of coverage for over 1/3 (36%) of these children. Another 8% have public insurance to supplement their private coverage. Medicaid provides a wide range of medical and long-term care services, many of which are not covered at all or only available in limited amounts through private insurance, and makes coverage affordable for many children with special health care needs and their families.
President Trump and Congressional Republicans are considering proposals to restructure Medicaid financing in ways that would cap federal funding through a block grant or per capita limit approach. Under such proposals, states could gain additional flexibility to administer their Medicaid programs but with funding constraints are likely to limit the number of people covered and the scope of benefits available as states use increased flexibility to address less federal funding than under the current financing structure. These changes are particularly relevant to children with special health care needs who use services more intensively than other children.
As of 2015, 50 states opt to cover children with significant disabilities living at home under the “Katie Beckett” pathway; this pathway disregards parental income and assets, just as they are for children with disabilities living in an institution, which makes it possible for children with disabilities to receive necessary care while remaining at home with their families. The child’s own income, up to 222% FPL ($26,460/year for an individual in 2016), and assets (generally limited to $2,000) are counted. Katie Beckett children also must meet SSI medical disability criteria and otherwise qualify for an institutional level of care according to functional eligibility criteria set by the state. Some states cover Katie Beckett children as an optional state plan group, while other states use a Medicaid home and community-based services waiver; using a waiver allows states to cap enrollment, which is not permitted under state plan authority.