Thursday, May 3rd, 2012
“The special-needs population is growing. Government funding is shrinking,” proclaimed the recent Newsweek piece The Coming Special Needs Care Crisis. Reading the realities the piece laid out was depressing—and not total news to me. I already know that our state’s funding for adults with special needs is getting cut back, and that the wait list for housing is very long. I know of the stats about higher stress levels among parents of kids with special needs, both because I’d reported on them and because I live that life. I know all about the day-to-day care and concerns of raising my son, Max.
The article also spoke of the isolation parents of kids with special needs can feel, thought it didn’t mention how incredible online support groups and blogs have been for sharing inspiration, information and virtual hugs. It didn’t touch on the implications of ObamaCare for kids with special needs. It also didn’t include, sadly, any constructive ideas for what could be done to help our kids get the services and care they need, now and forever. (It also referred to autism as the “800-pound gorilla in the room,” a dubious choice of words.)
I don’t have the answers; I’m not an expert. But I can share what’s helped me fund my son’s care, along with my thoughts on what could help boost his chances (and other kids’) of getting good care down the road:
• Ask for help. When Max was an infant, we knew he was at risk for serious issues; he’d had a stroke at birth. So we got him a ton of therapy. The insurance company often didn’t reimburse us, and costs were getting out of control. So I asked my parents to start giving him the money they were going to put into a college fund. The fund could wait; Max needed intensive therapy early on in life. There’s no shame in asking relatives to make contributions to your child’s care. One new way to get help: Tadpole Adaptive’s new special needs equipment registry, where parents can register for gear their child needs and friends and family can contribute.
• Find local resources. Years ago, I signed up for a respite care program through our branch of The Arc that gave us 14 free hours of caregiving a week. Over the years, I’ve also found qualified sitters by posting notes on bulletin boards at local colleges that teach pediatric physical, occupational and speech therapy; the students have always been eager for the hands-on experience and generally wonderful.
• More government regulation of insurance payments. There are currently proposals in several states, Kaiser Health News recently reported, that would require insurance companies to limit the co-pays for physical, occupational and speech therapy. Most would require that the fees cost no more than a visit to a primary care doctor (currently, some insurance companies consider these ”specialty” visits and charge increased co-pays).
• Pool parent funds. Last year, I went to a local seminar on Medicaid. The administrators talked of ridiculously long wait lists for housing and how often those who needed emergency placement (say, an adult with disabilities living with an elderly parent who died) took priority. The ray of light came when one rep spoke of parents pooling money for their kids; she knew of several families who’d combined funding they received from the state to buy a home, staffed with aides, for their children with disabilities. That seemed promising to me.
• Push Congress for more funding. With the recent news from the U.S. Centers for Disease Control (CDC) that 1 in 88 kids have autism, it’s a sure thing that the forces behind that disability will lobby fiercely for increased funding for kids and adults on the autism spectrum. Yesterday, protestors packed the Capitol Rotunda to speak out against proposed cuts for programs for those with intellectual disabilities, with representatives and senators joining them. One simple thing anyone can do: Write your congressperson and urge him or her to push for funding for the care of children and adults with disabilities (find your rep here).
What hopes and ideas do you have for navigating the financial costs of our children’s care, now and in the future?
From my other blog:
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