IACC Workshop: Addressing the Housing Needs of People with Autism, 7/23/19

The Interagency Autism Coordinating Committee (IACC) is holding a workshop to address the housing needs of people on the autism spectrum on 7/23/19:

Tuesday, July 23, 2019

Hilton Washington DC/Rockville Hotel and Executive Meeting Center 

1750 Rockville Pike 

Plaza Ballroom 

Rockville, MD 20852 

9:30 to 4:30 pm

“The purpose of the 2019 IACC Workshop, Addressing the Housing Needs of People on the Autism Spectrum, is to convene a working group of the IACC that will focus on housing needs of people on the autism spectrum. The workshop will be open to the public, will include time for public comments, and will be accessible by live webcast and conference call. "

Remote Access:

Conference Call:
Dial: 888-946-9416
Access code: 1391703 (listen only)

Webcast: https://videocast.nih.gov/summary.asp?live=33279&bhcp=1 

It is too late to submit a request to make oral or written comments to the committee during the 7/23 meeting, but truth be told, any member of the public can submit comments in writing to the IACC at any time. You can also listen in by phone or webcast.

Contact information:

Ms. Angelice Mitrakas
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 7218
Rockville, Maryland 20852
Phone: 301-435-9269
E-mail: IACCPublicInquiries@mail.nih.gov

Full Agenda for IACC Workshop, 7/23/19

Partial agenda that will include discussion of Intentional Community models:

Overview of Housing Issues

10:00 Status and Trends in Supports and Services from the Residential Information Systems Project
Heidi Eschenbacher, Ph.D.
Researcher, Institute on Community Integration, University of Minnesota

10:15  Trends and Insights from the Autism Housing Network
Desiree Kameka, M.T.S.
Director of Community Education & Advocacy, Madison House Autism Foundation 

10:30  Discussion of Public Comments

Susan Daniels, Ph.D.
Director, Office of Autism Research Coordination, NIMH, and Executive Secretary, IACC

Oni Celestin, Ph.D.
Science Policy Analyst, Office of Autism Research Coordination, NIMH

Intentional Community Models

1:00 Live. Learn. Lead. We’re the place for that…First Place AZ
Denise Resnik
CEO and Co-Founder, DRA Collective, Phoenix, Arizona

1:10 Benjamin’s Hope: a "Live, Learn, Play, Worship" Community Where People with Autism Enjoy Lives of Dignity and Purpose
Krista Mason
Executive Director, Benjamin’s Hope, Holland, Michigan


1:20  From House to Home: Thriving with Autism at The Center for Discovery
Terry Hamlin, Ed.D.
Associate Executive Director, Center for Discovery, Harris, New York


1:30 Organizing for Inclusive Community: Leveraging Partners and Policies to Make More Possible
Lindsay Johnson
Director of Policy and Partnerships, The Kelsey

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"The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in November 2015 to begin a new session under the Autism CARES Act."

Comments to the IACC from an MD addressing needs of people with severe autism

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). The following are comments from Lee Wachtel, MD, a child psychiatrist at the Kennedy Krieger Institute in Baltimore, MD:

Lee Wachtel, MD 
January 17, 2018

Hello, my name is Lee Wachtel, and I am a child psychiatrist working at the Kennedy Krieger Institute in Baltimore, where I run an inpatient unit for children, adolescents and young adults with autism who require hospitalization for severe, often life-threatening, and certainly life-limiting, challenging behaviors. I have been in this position for nearly 15 years, and would like to speak today on behalf of my patients, and their families, many of whom have remained under our care at KKI for years, right into adulthood.

The vast majority of our patients are significantly afflicted, and would be characterized in the DSM5 [Diagnostic and Statistical Manual on Mental Disorders] as having autism requiring extensive supports and with intellectual disability. They don’t come to KKI for their autism or ID, however, but rather for the severe self-injurious, aggressive and disruptive behaviors that they display, often within the context of further severe psychopathology that can run the gamut from anxiety, mood and psychotic disorders, and more. These kids are really suffering, and so are their families. These parents will move heaven and earth for their children – one of the hardest parts of the job is telling moms and dads on our waitlist that we don’t have a bed for their bloody and battered child TODAY – but none of our parents are glad that their child has autism, or see their son or daughter’s autism and associated suffering as part of neurodiversity. In fact, most of the parents would sell their soul for their child to not have autism. As one parent who spent 30 years campaigning for the best services for his son recently told me, “I would walk through perdition’s flames for my son, but I don’t buy into the autism fairytale.”

Not my words, but those of a parent who has walked the autism walk for 30 years. And I hear many such comments. I know very well that this type of response, and the mere existence of the types of severely afflicted autistic kids in our care, flies in the face of the overriding 2018 agenda for autism, where everything is rosy and diverse, and some even suggest the removal of the autism as a psychiatric illness. I would suggest that the DSM5 characterization of autism does not accurately describe the condition, and that there are likely many conditions currently all thrown together into the autism rubric, which only hinders science and our ability to make important advances to help everyone along this range of diagnoses. But I’m less for splitting hairs over diagnosis, and more for making sure that those who don’t currently fall into the happy and hopeful side of the diagnosis – at least not happy and hopeful today, but with the potential for so much improvement – still have a voice, and do not become the black sheep of the autism community just because they aren’t blogging or reciting soliloquies at Lincoln Center. Because these autistic kids with severe behavioral, psychiatric and medical concerns, as well as significant cognitive disability, really do exist, and so do their families, who are less than enamored with autism, and are frankly heartbroken and exhausted. These kids need our understanding and help just as much as the autistic child contemplating best strategies to succeed at college. And these kids will continue to need the support of the autism community as they become adults, as they will not be able to live independently, will require extensive supports and substituted decision-making, and can’t be pushed into models that just don’t meet their unique needs.

I encourage the IACC, and autism community in general to consider several things. First, the IACC needs to prioritize research on the treatment of self-injurious and aggressive behavior. These behaviors are highly prevalent — studies show about 1/3 of autistic kids engage in SIB and over half in aggressive behaviors, yet very little attention is paid to this devastating problem. The IACC should host a panel focused on these dangerous behaviors. Not only are these behaviors dangerous to the children and families involved, but they often preclude participation in inclusive, community-based educational and vocational programs. These behaviors are often physiological in etiology — typically from a co-morbid psychiatric disorder, and do not represent “communication” from non-verbal individuals. It is a medical problem that requires medical solutions.

Second, the IACC must promote a choice-based approach to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population.

Finally, we need to invite more parents of severely affected autistic children to have seats on the IACC. These parents represent children who can’t represent themselves, and they require a voice.

Thank you.

Madison House Autism Foundation presentation to the Interagency Autism Coordinating Committee

This is a videocast of a presentation by the Madison House Autism Foundation (MHAF) on housing options for adults with autism, including planned and intentional communities. It was presented to the Interagency Autism Coordinating Committee (IACC) at their July 2017 meeting.

Here is an overview of the IACC, a federal committee that advises the Secretary of Health and Human Services on autism issues:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The committee reconvened in November 2015 to begin a new session under the Autism CARES Act.

The IACC mission is to:

• Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
• Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
• Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.

IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings page.

Here is a link to the full meeting schedule of the July meeting of the IACC. The presentation by JaLynn Prince of MHAF begins at 3:52:15 and a presentation by Desiree Kameka on the Autism Housing Network (AHN) begins at 4:19:52. The AHN Website includes links to autism housing projects nationwide and answers questions about housing models and resources.