Learning autism's tough lessons

Getting services in Maryland for children who need them is a constant fight

September 27, 2010|By Dawn Koplos

Seven years ago, I wrote a piece about life with my son, who had recently been diagnosed with an autism spectrum disorder, and the challenges we faced. Little did I know that in the course of researching that article — and upon learning about the huge (epidemic) number of children diagnosed with autism spectrum disorders — my life's path was about to be forever altered. I went on to become executive director of Pathfinders for Autism, a statewide nonprofit dedicated to helping Maryland's families affected by autism — a position I was proud to hold for five years. I am now the director of education policy and children's issues for The Arc of Maryland, a statewide nonprofit dedicated to ensuring the civil rights and equal opportunities for all individuals with intellectual and developmental disabilities.

Back in 2005, I learned that my son was one of 5,764 children attending Maryland schools who were coded as having autism. The number in 1993 had been 260. Today, it is more than 8,000.

I learned that autism had been considered a rare disorder affecting 1 in 10,000 children. That rate was revised to 1 in 166, and then 1 in 150; now it is 1 in 110 and still climbing by as much as 10 percent each year.

I learned that the autism community is well organized and desperate for answers and services. But I also learned that there are schisms within the autism community and between this community and other disability groups. I learned that parents of children with autism have been vocal, active and successful on many fronts, including raising millions of dollars to further research. In Maryland, a brilliant father created the first Medicaid Home & Community Waiver program for children with autism that now serves 900 families. This program provides community-based services for children ages 1 to 21; previously, there were very few agencies providing such services to families. I learned that if you put a funding mechanism in place, providers will come.

I learned there are now 3,200 children on the waiting list for Maryland's autism waiver, and that of the 900 being served, none are under age 6. Those children next in line will also be over age 6, as the average wait time is several years. That means these children are not receiving early-intervention services at a young age, as the Autism Waiver was intended to provide.

Then I learned there were 19,000 individuals on the waiting list for services from the Developmental Disabilities Administration (DDA). I learned that DDA is pretty much the only hope for services for families as students leave the school system. And I learned that even individuals "in crisis" (those at risk of homelessness or injury) can languish on the waiting list for years.

I learned that my outrage over the lack of autism services and providers, evidence-based treatments and explanations for the continuing increase was soon to be overtaken as I became involved in the larger fight for all people with intellectual and developmental disabilities.

I learned that I could not sit by and fail to advocate for basic issues — better policies for all individuals with disabilities and their families; integrated and inclusive school settings; the elimination of mercury and other toxic substances in our environment, our foods and our baby bottles.

I learned that people-first language does matter. People with disabilities should not be defined by their diagnoses or disabilities; they are people, first. Word choices can lower or limit expectations. We've seen the power of language on other groups and for the most part no longer use ethnic or racial slurs. It is time to recognize the power of limiting terms in describing people with disabilities as well.

I learned that our political process is excruciatingly slow to do the right thing. There's never enough money. Our despicable history of shunning people with disabilities is not that far removed from the current way we demonstrate our priorities through budget setting and policy development.

I have learned that one of the reasons our public schools are so ill-equipped to properly support our kids is that too many parents believe that segregated schools guarantee their child better outcomes. (They don't.)

I have heard sad, frightening, horrific stories of children with intellectual and developmental disabilities in Maryland's foster care and juvenile justice systems.

I have heard far too many stories from parents and special education attorneys that all echo the same systemic issues within our education system.

I have heard far too many moms tell me that they "knew something was wrong," only to be dismissed by their pediatrician as "nervous" or "first-time" moms. This resulted in lengthy delays in having the child diagnosed and starting early intervention therapies.

I have learned that my heart will never stop breaking, no matter how many times I witness these stories played out in real lives. I have learned not to think too much about them as I go about performing my job each day — or risk crying at meetings. And, now, I suppose I can even understand how disassociated some of our state and local administrators have become. If you look away too long, you might just forget what's really at stake.

Dawn Koplos lives in Severna Park. Her e-mail is dkoplos@erols.com.

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