Wonderful, heart-felt and heart-wrenching posts on some other blogs (in particular, this one by Dream Mom) have me thinking about Medicaid (again---I admit, it's an occupational hazard).
People who have no experience living with disability (their own or their child's) have limited understanding of the safety net provided by Medicaid. Basically, Medicaid provides health care coverage for poor children and pregnant women, the elderly, and the disabled. We won't go into too much detail, so stick with me, because this is important!
Medicaid also provides for institutional care for poor people in certain kinds of nursing homes and in "intermediate care facilities for the mentally retarded" (ICF/MR). If you meet the criteria needed to be admitted to any of these institutions, and you are poor, Medicaid will pay for your institutionalization. There are lots of state options here, it's not quite as simple as all that, but basically, if you are poor and in an institution, Medicaid will pay for your nursing care, and all related care required to maintain your life and health while you are institutionalized.
However, what many people don't realize is that it is possible to get Medicaid to "waive" the requirement that you be institutionalized to receive that same level of care. This is known as a "Medicaid Waiver", and what it does is supply the nursing or personal attendant care, and other needed services, in your very own home! And if your child meets the medical or disability criteria (in other words, meets the same criteria needed to be admitted to one of those institutions) then only your child's income is counted for establishing "poverty". (Adults with disabilities will have to account for their income in a similar manner).
Now, don't you wish it was all that simple? It should be, but you will know I am lying if I tell you to run on down to your local department of social services and just sign up for a waiver!
First of all, each state differs in the kind of waivers they have had approved by the Centers for Medicaid and Medicare Services (CMS). Each state has different criteria. Each state has variously long waiting lists, or shortages of providers, or inequitable services based on narrow criteria.
Nevertheless, parents should ask about waivers. See the link in the title above to start looking in your own state for contacts. Call your local public health department, local department of social services, or your local "mental retardation" agency. Call until you get someone who knows something about waivers.
Dream Mom's post about not being able to work because she cannot find day care for her child is one I hear over and over. We would have more taxpaying parents if we had real, solid support for those struggling to care for these complex children at home. The choice should not be between putting your child away in a nursing home and working to support your family.
There is not enough citizen support for increasing these kinds of programs. Everyone is under some kind of misapprehension that "there are lots of programs for kids like that". There aren't. These programs require tax dollars, and that requires voters, voters who understand that in order to support people in their community instead of state institutions or nursing homes, we need to increase funds. This is a common sense and worthwhile thing, not a "drain" on the "government". It keeps more people employed. It keeps more families intact. These are our neighbors, the kid up the street, the mom you see at church.
Dream Mom's kid. My kid. Maybe your kid. All our kids.