Your Comments on Autism Services Sought for the IACC
August 20, 2008 by Kristina Chew, PhD
Filed under Health
The Interagency Autism Coordinating Committee (IACC) coordinates research and efforts pertaining to autism spectrum disorder (ASD) within the Department of Health and Human Services (DHHS). On August 11th, the National Institute of Mental Health issued a Request for Information (RFI): Priorities for the IACC Services Subcommittee for Autism Spectrum Disorders (ASD):
The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
The IACC is looking for your input and ideas about
….high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
You can send in your responses (limited to one page) to iaccservices@mail.nih.gov , no later than September 19, 2008, and marked with this RFI identifier, NOT-MH-08-016, in the subject line. Responses will be collated, summarized, and provided to the IACC Services Subcommittee and to the public, and the collected information analyzed and used in reports. The Service Subcommittee meets on September 15th to discuss all comments received to date (information here to attend via conference call) and will present these at the next meeting of the IACC, on November 21, 2008.
“Education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning”—these are the issues I’m most concerned about and have been concerned about, and will be writing to the IACC about. The Arizona Republic describes another approach to housing for disabled adults: Placing a child in the home of a home of a licensed caregiver full-time. I read about these arrangements and think, that would never work for Charlie, and I just don’t know, and what will happen when he’s older……. How can we start planning and working to create the best possible life for Charlie and individuals like him, right now and throughout their whole lifespans?
One option that I think receives less consideration than it might are farming communities as a community living option. This article discusses some pros and cons. My own feeling is that it could be more available for those who would enjoy having such as a lifestyle and vocation.
In Response to Deinstitutionalization: Farm Communities as a Housing Alternative for Individuals with Autism .
The biggest long-term concern that I have is opportunity for exercise of autonomy, competent professionals/parapros, and dignified living conditions premised from strengths at least as much as that from disability. Unfortunately, the ringer is $$…always $$, which can derail the best laid plans. I would feel a lot more confident if our society would establish a permanent and long-view commitment to basic and quality safety nets/systems for those most vulnerable in the society, because so far my experience is that these are too susceptible to political sea changes.
The Friends of Autistic People are also planning a farm community in southwestern Connecticut.
Regan, maybe this is too huge a question, but what kind of economic model might help to make such a “permanent and long-view commitment” plausible?
Huge is right. That was my hyperbolic, over the top never gonna happen wish…as far as the economic model that would make it happen…how about one that is at least as committed as the defense budget?
If in my lifetime I see IDEA fully funded as originally specified, I will consider that a real statement of commitment by the Federal government. I think underfunding has become so much of the status quo that I talked to some state lawmakers who were unaware that it was underfunded.
So, not relevant to the IACC, but just on my mind.
I’ve attended two IACC meetings and given statements during the public comment sessions. I have also submitted RFI statements and attended several conference calls (listen-only mode). My impression is that NIMH is very interested in hearing ALL points of view. I don’t think it’s a “done deal” that only certain types of research are going to get funded. Right now research into services and supports is vastly underfunded compared with genetic research and even biomedical research. If a concerted effort is made to respond to this RFI I think it could make a difference in where funds are allocated.