Medicaid is a joint program financed by both the US Federal government and several states; it provides health coverage for low-income Americans. Both critical health services and long-term care are available to roughly 52 million Americans (about 1 in 7 US Citizens) through this powerful program, including over a million disabled youths of 21 years of age or under. Over 20% of the population of disabled youth are receiving Medicaid, including 7 out of 10 low-income children with disabilities.

These disabilities run a wide gamut, including both physical conditions such as cerebral palsy or congenital blindness, and mental conditions such as dyslexia or autism-spectrum disorders. The major channel of coverage for disabled children, Supplemental Security Income (SSI 'disability' payments), primarily goes to children with a primary mental disability such as a developmental disability or an emotional disorder.

Because Medicaid is forged between the Federal and state Governments, both have a say in how it works. The Federal government establishes basic eligibility requirements and broad benefit guidelines, but each state defines precisely what income ranges qualify in their territory, and what services they will offer. However, in an effort to support children's health, the Federal Government is much stricter about children's benefits, forcing states to accept children in at a much higher income threshold than most choose to accept adults, and to offer them a much wider scope and higher quality set of services than they offer adults.

The first and most important service mandated by the Federal government for disabled children is called the Early and Periodic Screening, Diagnostic, and Treatment benefit (EPSDT). This benefit begins at birth, and is responsible for paying for all of the hearing, vision, dental, mental / emotional, and physical exams your child receives at no cost from your school and medical provider, as well as paying for immunizations. If a child is discovered to have a genuine medical issue and is low-income, the 'treatment' part of the program kicks in to pay for whatever form of standardized treatment that state affords them.

… And Introducing 'Aging Out'

All of which is absolutely awesome … right up until the child turns 19 (21 in some states). The moment a person with a disability is no longer a 'youth,' they suddenly find themselves with absolutely nothing in terms of Medicaid benefits unless they qualify for one of the disability programs. Even those who do qualify for an adult-oriented Medicaid disability program often find that their new program (no longer subject to the federal pro-child rules) is substantially lacking in support compared to their old one.

This sudden decrease in support and benefits is known as “Aging Out,” and it is the single most difficult problem many American parents of children with disabilities will contend with during their child's transition to adulthood. Over the next several posts, we're going to explore the effects of aging out of EPSDT and into 'normal' Medicaid, and offer some of our best advice about how to deal with the transition if you're a parent with a disabled child .