IACC (InterAgency Autism Coordinating Committee) met for a full committee meeting on Tuesday January 29, 2013 at NIH main campus – Bethesda, MD.
This meeting was intended to finalize the final Autism National Strategic Plan which has 7 questions from diagnoses, services, cause, biology, genetics, environmental factors to the surveillance system in the country, which is where we get the 1 in 88 number. For the past year or so, we looked at national and international studies done and published.
Some of the highlights that interested me were; the need to decrease the persistence racial/ethnic services and research disparity. To increase the diversity of autism workforce in services and research fellows through CAA funded programs. I am excited about this. Even HRSA is picking up here by asking their 43 LEND university programs to assure there is an increase diversity in their graduate fellows. They told me they now have a better way to measure and if a university is not following such guidelines to hold them accountable. Finally HRSA is looking colorful – I am beginning to like them a little. The devil is always in the detail especially in their child and maternal health programs which sorely need improvement.
Dr. Cordero from Univ of Puerto Rico did a presentation on autism prevalence there. There is no ADDM system there and got data from dept of education. 1 in 62 kids were autistic similar to Hispanic population in the U.S and if a parent was born in USA, the more likely they were to say their child had autism than if they were born in Puerto Rico. Again, this emphasizes the need for considering cultural perspectives on autism diagnoses and intervention.
Dr. Fein from Univ of CT (Fein et al (2013) J. Child Psychology and Psychiatry presented findings on optimal outcome in children with autism by tracking children that got early behavioral intervention. The 1987 Dr. Lovaas study of 40 hours of ABA whereby out of 19 kids, 47% entered kinder garden in regular classrooms had been attempted but the same results were not replicated. In addition, normal IQ and functioning in regular class-room did not mean losing the autism diagnoses. Sutera, S., et al (2007) 73 children diagnosed with ASD at age 2 followed to age 4 and 13 (18%) lost the diagnoses. I hope states take this data into consideration as they write policies and legislations. Dr. Fein also said high rates of repetitive behavior do not prelude OO. (optimal outcome). This gave me as a mom hope. In other words, children who get early behavioral intervention do better though not necessarily lose the autism diagnoses. In addition, this study had very little ethnic or geographic diversity as it was mostly Caucasian and done in East Coast states. It is my hope that future NIH funded research will require diverse population to get an optimal view of autism.
Another interesting research done by the Lewin group looked at autism medical claims of behavioral therapy, mental health treatment and pharmacy data. Of the half with available data, over 75% were white and 80% were male. It found that ASD children had more sleep issues, gastrointestinal and nutrition problems. ASD siblings were less likely to get vaccines and ASD parents were more likely stressed. No surprise here. These are symptoms and issues that are real and we live with it daily.
Finally, we got to IACC business and how to assure we take an active & more assertive role in advising the Secretary on services delivery rather than only services and policy research. In other words, families are on fire and need services now. My advice would be to ask Sec Sebelius and Congress to change CMS rules and allow behavioral therapy in EPSDT so that all low income families can get access to it. In addition, we need to add it to ACA – but at the same time and not leave the low income kids who are mostly minorities on the back of the services bus. Perhaps Minnesota can take note here. Let’s hope state legislators help all kids at the same-time for the same coverage of benefits. Nothing less than that will create even more disparity and health inequity.
All of the Federal and Public members acknowledged the need to close the disparity gap in diagnoses, intervention and family support. When this finally happens, I think I will party like it is 1999. Everyone talks about disparity and diversity, but few agencies both public and private actually practice it.
In Minnesota, there has been a legislation introduced by DFL representative Norton and DFL senator Eaton that mandates private insurance to pay unlimited autism therapy. There has been nothing equivalent for low income children that have public insurance/Medicaid. President Obama said once “Republicans want poor children with autism and disabilities to fend for themselves”. Minnesota Democrats who introduced, co-authored or allowed it in their committees want poor children with autism to FEND for themselves now. This kind of deliberate disparity creating policies are wrong at its core.
One day soon every child/adult with autism will get the medical services and intervention he/she needs. That is my goal and hope. We in the minority communities especially African Americans need to learn the connection between politics to policy to services and resources as well as diverse workforce. We elect public officials to represent our concerns not throw us under the bus. That is what is happening in Minnesota state capitol for poor children with autism. Your votes at work. Think about that and vote differently next time or disparity will remain our first name, wide achievement gap our middle name and screwed our last name.
Thanks!
Idil – Somali Autism Mom.
www.saafmn.org