When most people hear the word Medicaid, they probably think about health care for poor people, especially children. To an extent, that is true. But for children and adults with intellectual and developmental disabilities and their families, Medicaid means so much more than just health care. For them, Medicaid is the reason people with disabilities and their families have been able to thrive in our communities, having a quality of life comparable to that of other citizens.
Now, in the face of a protracted economic downturn, Medicaid is under attack. Proposals to rein in the national deficit threaten the future for those currently receiving services and would extinguish hope for those with future needs.
One such proposal would make the entire Medicaid program a block grant, cutting $810 billion over the next 10 years. States would be left holding the mixed bag of overwhelming fiscal responsibility and choosing which needy group — people with disabilities, the elderly, the medically fragile, uninsured children, or those with intellectual and developmental disabilities — would have their services cut.
Many argue that cuts to curb federal budget deficits have to start somewhere. However, it may be enlightening to understand — and appreciate — the commitment of the elected and appointed leaders who helped forge this important policy in the first place.
Arguably, that commitment was first evident when, in 1975, students with Down syndrome, autism, cerebral palsy and hundreds of other types of intellectual and developmental disabilities became "entitled" to a free and appropriate education with passage of The Education for All Handicapped Children Act. This measure allowed special education students, previously excluded from educational services, to acquire knowledge and develop skills like their peers without disabilities. At least equally important, they were now able to enjoy more typical social and interpersonal experiences. All of this better prepares these students for an adult life in which they work and live in the community — the same goal we have for children without disabilities.
But there was the rub. In the '70s and '80s, special education students were exiting school with no guarantee of access to (or funding for) needed support services like job coaching, vocational training, job placement support or day habilitation services. For many, turning 21 meant an end to a life of growth and development. For those whose parents could no longer provide care in the family home, the limited number of community group homes had few openings and long waiting lists. That left most in state institutions, where their quality of life was limited at best.
In the 1980s, the federal government began allowing states that were downsizing and closing such institutions to use Medicaid matching dollars for Home and Community Based Services. Previously, Medicaid funds were available only to individuals with intellectual and developmental disabilities who resided in state institutions (because they operated more like hospitals in times past). With an approved waiver, though, states could use Medicaid matching funds to "follow" a person who moved to community care in a small group home.
Many states quickly sought and received approval for waivers that would also allow states to receive Medicaid matching funds for those who had never lived in a state institution. This last step enabled Maryland and other states to rapidly expand their network of community-based care, which included services like residential (community living) services, supported employment, day centers, job coaching, and training for supervised work crews as well as family support services. Though the steady expansion of community-based services has always lagged behind the number in need (creating persistent waiting lists), at least there was hope on the horizon.
Now, all of those gains are in jeopardy. That's why parent advocates, self-advocates, volunteer leaders, and staff from The Arc Baltimore traveled to Washington last November and again in April to deliver a message to members of Maryland's congressional delegation: "Medicaid is our lifeline. Don't cut our lifeline." As Election Day approaches, voters, especially those with family members who presently or may in the future depend on the vital community-based supports funded by the Medicaid program, should ask each candidate's position on the Medicaid program. And that position should weigh heavily on which lever is pulled when each voter steps inside the voting booth on Nov. 4.
Stephen H. Morgan is executive director of The Arc Baltimore. His email is firstname.lastname@example.org.