Giving New Meaning to Parenting

I read an article in the New York Times about the difficulty in providing education for autistic children. Fundamentally, the argument goes like this: Autistic children need intensive and expensive education and therapy early on if we hope to have them function independently later in life. Without this education, they will likely be at home or in a publicly-supported residential program later on as adults.

Depending on the individual, there is probably still a chance that many of the more severely autistic children may end up in supported environments anyway, but there’s no way to predict this outcome right now of course. Private education settings, when they are available, for autistic children have really high tuitions- $35,000 and greater per year, with the school profiled in New York costing $85,000 per year. This burden could bankrupt desperate families.

The alternative is to place a child in a public school setting. Many public schools are not able to provide the “maximum” or Rolls-Royce of services for autistic children, but try to provide something. In some rare instances, there are programs like the Delaware Autism Program (a public school program) that do a remarkable job with kids, including job skills training on top of education. This has caused many families to uproot their lives and relocate to school districts with good programs- even if that means moving to another state.

My friend who has a child in the program has told me of families moving here from Georgia, Texas and even Africa to find help for their children. (This also means that anyone looking to local environmental factors as a potential cause for autism or looking at clusters of cases has to be exceedingly careful, because families are relocating because of programs available, meaning the child already had a problem before moving locally, causing totally artificial clusters, caused only by good schooling.)

Another alternative pursued by some parents under the Individuals with Disabilities Education Act or IDEA, is to allege that the school district is unable to provide a “free and appropriate” education for these children with special needs, and thus the school should pay private tuition to institutions able to meet these special needs. However, with diagnosed cases of autism doubling over the past 10 years, the “out of district” costs for providing for these students is skyrocketing.

One of the solutions is for school districts (often already strapped for cash) to open their own autism school. That’s certainly what Ma Chen did for her autistic daughter in China. There’s news of charter schools for autistic children being set up in different parts of the country.

The question of allocation of limited resources for kids with special needs comes into play here more vividly than, say, an argument about whether Wilson or Orton-Gillingham reading instruction be provided to kids in every school, whether or not they struggle with reading.

And here’s the ugly actuarial question: How much money is necessary to improve the outcome for these kids? How does early intervention effect their long term prospects? How much more therapy and intervention leads to a better versus a worse outcome? And when will you wind up in the same place, with or without intervention? How much money do you spend on the children who have the most complicated problems? And here’s the real rub: is that money better allocated to children for whom there seems to be a “better chance” of educating to become productive taxpayers?

With our current economic woes, we’re going to have to face some really ugly questions about how we spend and allocate resources. This includes how much money we spend on “end of life” treatments for diseases for which there is no cure, as well as how much education is “adequate” for children with a variety of mild to severe disabilities.

While we all want the very best for our kids, there is a point in time where all the extra help and coaching may not improve the outcome- we get to a point of diminishing returns for each dollar spent. No one wants to tell someone else that their child may not get any better, even when that reality seems pretty clear to outside observers. It’s even trickier because no one knows for sure where any of these lines are, either. We can’t predict right now who will improve and who will not, let alone what they will look like or be capable of in 10, 15, or 20 years. Couple this with the fact that the brain responds well to stimulus, we know a lack of stimulus certainly won’t help, but will this particular stimulus help enough? What is enough?

I’ll be the first to agree that no help is not an option. But we have yet to figure out for autism or many other disabilities what the appropriate “dosage” of help is for kids. And until we have this information, we will continue to spend money hoping to improve outcomes, hoping to reduce long term costs, hoping to maximize a child’s abilities while the window of development is open.

Parents are living on hope. They are literally banking on hope, taking out mortgages, selling things, doing whatever is necessary to try to maximize their child’s outcome. I cannot imagine what would happen if districts like those discussed in the New York Times article decide they need to cut finding to educate these children.

When hope falters, when the little yellow bus stops coming every day-that’s when reality sets in. And I worry that the long term reality may be that all the short term costs have not yielded the results we all would hope for, leaving parents, children, and schools holding the bills, wondering what to do next.

by Whitney Hoffman

Photo graciously provided by theparadigmshifter, through a Creative Commons license, some rights reserved