Saturday, July 27, 2019

From the Interagency Autism Coordinating Committee on Autism Housing Needs, 7/23/19


This is from an account of the Interagency Autism Coordinating Committee meeting on 7/23/19 by Jill Escher: 


Susan Jennings, founder of Keeping Individuals with Intellectual Disability Safe (KIIDS) shared an oral public comment that her son is one of those who kicks down doors and elopes into traffic. He has been discharged from six different group homes, as none could manage his challenging behaviors. She cited systemic shortcomings to community group home, including severe abuse and toxic over-medication. His salvation was an ICF, and she laughed at the idea of “forced institutionalization” since “You can’t force your way” into an ICF since “they are closed or closing.”

She said her son is far from an anomaly. About 40% of the autism population exhibits severe challenging behavior. Because of the lack of options, these adults often languish in psychiatric facilities, hospitals, or jails. The Olmstead Supreme Court decision recognizes that the ADA does not impel states to close institutions, and indeed that some individuals may need these setting for crisis periods or permanently. They must remain available, as they offer a superior form of care for a segment of the population, she said. There are very high costs to keep some adults “in the community” with too little assistance and supervision. “The state center is a bargain compared to the community,” and also provides her son a much greater degree of personal freedom. Also, unlike community settings, ICFs must meet rigorous standards to be certified. She drew attention to the direct service provider (DSP) shortage: “You are asking people to handle life-and-death emergencies at fast-food wages.” Finally she denounced the “cruel movement afoot” to defund out-of-home options. If parents do not have the ability to care for severely affected adults — who does? We must offer a full range of services.

Thursday, July 25, 2019

Happy Times!


These were Happy Times fifty years ago, except for the Vietnam War, racial and political strife, drugs, dropouts, cults, and Richard Nixon. Listen to 18 minutes of pure bliss.

Friday, July 19, 2019

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



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."