Words a Parent Is Not Happy To Hear
December 31, 2007 by Kristina Chew, PhD
Filed under Health
“We’re not required to provide the absolute best treatment.”
So the December 30th Reno Gazette-Journal quotes Wendy Whipple, early intervention coordinator with EIS (Nevada’s Early Intervention Services), in an article entitled Parents Contend State Fails Autistic Children. Overwhelmed by long waiting lists, the Nevada EIS “can’t serve all the children who already have therapy plans — a violation of federal law, officials admitted last month. ………But when it comes to autism, some parents complained that EIS provides a minimum of help.” A number of parents of autistic children contend that the EIS’ ” workers ignored symptoms, provided minimum and, in some cases, inappropriate services and obstructed parents’ access to proper care and treatment of autistic children”—-and the words of Whipple suggest that the bare (very bare) minimum of services are being provided, without regard for what children actually need. Notes the Reno Gazette-Journal:
Local officials estimate that there are about 5,000 children statewide affected by autism, a behavioral disorder in which children become isolated within their own minds and don’t respond to the world around them.
Advocates for disabled children say the state’s estimates of the number of autistic children are probably low. Estimates based on births don’t take families who move to the state into account, and Nevada is the fastest-growing state in the nation.
Early treatment necessary
Proper treatment, which experts say often involves a minimum of 25 hours of intensive behavioral therapy and other specialized treatments per week, is so expensive that the state program usually avoids dealing with the problem, they said.
Instead, some parents and advocates said, families are offered minimal therapy for speech or occupational development while the main problem of autism is left untreated. By the time a child turns 3, the state agency is no longer involved….
While parents like Toni Richard of Reno, whose son Tyler has autism, note that there is a lack of staff qualified to help autistic children, they also note that (in Richard’s words) “‘The culture there [at EIS]is to get away with minimum effort because there just aren’t enough staff members to do the job and some of the staff members they have aren’t qualified to deal with autism. But they make life-changing decisions about children’s futures anyway.’” This is a familiar situation to me, as is choking frustration a parent feels: “Officials” wringing hands and pulling long faces and expressing their concerns about one’s child, but they “just don’t have the resources” (and how about trying this “center” in the meantime and wait and see about “other demands and concerns”). What can one do?
Call for more teacher training—-a long-term solution but a necessary one.
Teach oneself.
Dig in.
Have an answer ready for when you hear “we’re not required to provide the absolute best treatment”: “The absolute best treatment is the ONLY treatment there is.”
actually it is miss whipple who is correct legally and you are the one who is presenting inaccurate info in this blog entry. Kristina, are you familiar with special education law, i.e. the Rowley decision made by the U.S. Supreme court? The IDEA only makes the statement “Free and appropriate education” The supreme court ruled in Rowley that appropriate does not mean best. So, legally there is a middle ground. While school districts are not required to give Rolls Royce treatment they are required to avoid jalopy treatment to use an old cliche.
As far as your apparent insinuation that ABA and other treatments constitute “best” i must disagree. There is no scientific evidence that ABA is of any use and, ironically, all of lovaas’ research has involved the use of aversives which you have disparaged in your posts criticizing the judge Rottenberg center. The promise of a coin-flip probability of normalcy is merely an opiate of the parents of autistic children.
I am a 52-year-old with autism who underwent psychoanalysis during the Bettleheim era. I went from being nonverbal shortly before the age of 3, to having fully functional speech before age 5. My psychoanalyst took full credit for my recovery. Based on your argument parents should ask for psychoanalysis in their child’s IEP because it constitutes “best”
I’m sorry, I missed where in the blog post ABA was referenced?
The point on IDEA is that the student still has the right under FAPE to make “meaningful” progress, and that lack of staff and lack of training is not valid justification for not doing so. I agree that the law does not specify optimal, but it does not imply minimal or none, either.
Living in Nevada (more particularly, in Reno, so I saw this as part of the front page, and I know some of those cited through the cluster of articles that were in the paper today), the funding really doesn’t exist. As an advocate during our recent tight legislative session (for various reasons), it was only possible to get funding for a very limited number of individuals, and it’s true that to get proper funding for individuals in the lower double digits it costs several million. We’re still working with what we have (even now), but it is hard to get funding for such things when taxes are taboo and some want to throw everything into education. Actually, this year was the first year there was ANY funding, thanks to largely better mobilized advocacy.
Cliff
I also have some issues with the statement that “The absolute best treatment is the ONLY treatment there is.”
On the one hand, you shouldn’t settle for junk. On the other hand, the law does not require the “absolute best treatment.”
Let me remind you of the realities of special education teaching and caseloads. While your child (ren) are your sole focus, as a case manager, your child (ren) are only a portion of a caseload. If you demand Cadillac treatment for your child, then what happens to the rest of the children on that teacher’s caseload?
You want the absolutely best treatment out there, then you need to fight for better funding of education generally, and specifically, full funding of IDEIA.
I think we’re all aware of those realities but if we don’t demand the best, they’re not giving it to you (not in the school districts we’ve been in). Yes, better funding of education and full funding of IDEA!
@jonathan, thanks for writing about your history. I am aware of what IDEA says; a parent can still ask for what they believe is what a child needs, and otherwise seek to provide it. “Best” is perhaps a more subjective term than it seems.
And, I’m very aware of the use of aversives in ABA and, having had too many ABA consultants talk about “recovery” and “recovery goals,” have plenty of my own questions to ask them. It’s unfortunate that said consultants and professional marketed ABA in terms of recovery.
@Cliff. Some funding is better than none—-it’s hard to see parents end up fighting each other over what dollars there are, rather than the “powers that be” that make the decisions.