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Transcript of September 15, 2011 IACC Services Workshop

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Transcript of September 15, 2011 IACC Services Workshop 1 U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES INTERAGENCY AUTISM COORDINATING COMMITTEE 2011 IACC SERVICES WORKSHOP: ENHANCING SUPPORTS FOR PEOPLE WITH AUTISM AND THEIR FAMILIES: COMMUNITY INTEGRATION AND THE CHANGING DELIVERY SYSTEM THURSDAY, SEPTEMBER 15, 2011 The Workshop met in the Congressional Ballroom of The Bethesda Marriott, 5151 Pooks Hill Road, Bethesda, Maryland, at 8:30 a.m., Ellen Blackwell and Lee Grossman, Co-Chairs, presiding. PARTICIPANTS: ELLEN BLACKWELL, M.S.W., Services Subcommittee Co-Chair, Centers for Medicare & Medicaid Services (CMS) LEE GROSSMAN, Services Subcommittee Co-Chair, Advance Enterprises, LLC SUSAN DANIELS, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), National Institute of Mental Health (NIMH) DANIEL DAVIS, U.S. Department of Health & Human Services (HHS), Office on Disability (representing Henry Claypool) NEAL R. GROSS COURT REPORTERS AND TRANSCRIBERS 1323 RHODE ISLAND AVE., N.W. (202) 234-4433 WASHINGTON, D.C. 20005-3701 www.nealrgross.com 2 PARTICIPANTS (continued): ALICE KAU, Ph.D. Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)(representing Alan Guttmacher, Ph.D.) LAURA KAVANAGH, M.P.P., Health Resources and Services Administration (HRSA) SHARON LEWIS, Administration for Children and Families (ACF) CHRISTINE McKEE, J.D. ARI NE'EMAN, Autistic Self Advocacy Network (ASAN) CATHERINE RICE, Ph.D., Centers for Disease Control and Prevention (CDC) (representing Coleen Boyle, Ph.D.) (attended by phone) STEPHEN SHORE, Ed.D., Adelphi University and Autism Spectrum Consulting ALISON TEPPER SINGER, M.B.A., Autism Science Foundation (ASF) (attended by phone) ANN WAGNER, Ph.D., National Institute of Mental Health (NIMH) (representing Thomas Insel, M.D.) LARRY WEXLER, Ed.D., Department of Education (attended by phone) 3 PRESENTERS: BRIAN ABERY, Ph.D., University of Minnesota DANIEL ABREU, M.S., C.R.C., L.M.H.C., Policy Research Associates, Inc., The SAMHSA National GAINS Center ALISON BARKOFF, J.D., U.S. Department of Justice GEORGE BRADDOCK, Creative Housing Solutions, LLC KEITH BOURDON, M.A., L.S.W., Taunton District Court CHRISTIAN BUTT, J.D., Hawaii Department of Human Services JUNE GRODEN, Ph.D., The Groden Center, Inc. CINDY GWINN, Virginia Department of Behavioral Health and Developmental Services BILL McANDREW, M.A., Community Partnerships, Inc., Anna Maria College THOMAS McCOOL, Ed.D., Eden Autism Services NANCY JESS MURRAY, M.S., The Arc of Greater Pittsburgh at ACHIEVA PIA NEWMAN, Pennsylvania Department of Public Welfare C. LEE PRICE, M.S., Virginia Department of Behavioral Health and Developmental Services 4 PRESENTERS (continued): JENNIFER SHEEHY, M.B.A, U.S. Department of Education JAMI SNYDER, Arizona Health Care Cost Containment System STEVEN TURNER, M.S., Adult and Youth Taunton Community Crisis Intervention Teams, Taunton Police Department NINA WALL-CÔTÉ, M.S.S., L.S.W., Pennsylvania Department of Public Welfare KATHLEEN WOLFE, J.D., U.S. Department of Justice, Georgetown University 5 TABLE OF CONTENTS Welcome and Introductions Ellen Blackwell and Lee Grossman. .7 Roll Call Dr. Susan Daniels . 15 Self Determination as a Guiding Principle for Services for People with Disabilities Dr. Brian Abery . 20 Safe and Supportive Environments for people with Autism George Braddock . 62 Criminal Justice Diversion of People with Disabilities Daniel Abreu. .105 Taunton, Massachusetts Community Crisis Intervention Team: Steven Turner. .. .123 Keith Bourdon . .134 Bill McAndrew . .143 Home and Community-Based Services: Federal Precepts and the State Delivery System Ellen Blackwell . .176 C. Lee Price. .192 Cindy Gwinn . .208 Americans with Disabilities Act and Olmstead Enforcement Alison Barkoff. .228 Kathleen Wolfe. .250 Panel Discussions. 276 Panel on Managed Care for People with Disabilities Jami Snyder . .278 Christian Butt. .297 Pia Newman. .304 6 Panel on Services Provision to People with Autism Dr. June Groden . .342 Nancy Jess Murray. .363 Dr. Thomas McCool . .380 Rehabilitation Research and Employment Services Jennifer Sheehy. ..399 Subcommittee Discussion. 431 Closing Comments and Adjournment.. .. .434 7 PROCEEDINGS 8:42 a.m. Dr. Daniels: Good morning I wanted to welcome all of you to this workshop today, "Enhancing Supports for People with Autism and their Families: Community Integration and the Changing Delivery System." We are really excited to have all of you here, our distinguished speakers, our members of the IACC and members of the public who are attending, as well as our web audience and our phone audience. So welcome, everyone, we really look forward to a stimulating day. And I'd like to introduce our co­ chairs of the Services Subcommittee, Lee Grossman and Ellen Blackwell and they will be chairing the meeting today. Ms. Blackwell: Hi everyone. Good morning. This is Ellen Blackwell. I am with the Centers for Medicare and Medicaid Services in Baltimore. Today is our last Services 8 Subcommittee meeting under the Combating Autism Act. It's really hard for me to believe. I think I have been coming to these meetings for about eight years, so today is really a landmark day for me, and there have been so many changes since I first started coming to IACC meetings. I see a few faces in the room who were around then, Ann, and at that time, I was thinking last night, we didn't talk about services at all. We talked a lot about the biology of autism, and there were a lot of people at my agency, CMS, who said why is CMS even at these meetings because there is no discussion about services? So we have come such a long way. We have a Services Subcommittee and now Services has really migrated heavily into -- or did migrate, I guess I should say, past tense, into the IACC meetings. 9 So I just think that's a really landmark development and I am so happy that things have gone in this direction. I also wanted to thank Gail Houle, who was the co-chair of the Services Subcommittee prior to my tenure in this role, and also Dr. Daniels, and, as usual, the great team at the National Institute of Mental Health Office of Autism Research Coordination, that got everybody here today, gets all our meeting logistics together, and we appreciate it so much. So with that -- and also Dr. Insel, our Chairman, who has really hung in there over the long haul. Okay, Lee, I will turn it over to you. Mr. Grossman: Thank you Ellen. I am Lee Grossman and I have a 24-year-old son with autism. It's been my pleasure to serve as the Services Subcommittee co-chair for these past four years with Ellen. 10 I am the longest-tenured IACC member. I have served the full term of both iterations of the IACC. So I have been around since, really, 10 years now, on the IACC, and have seen a number of changes, particularly in services. When the IACC first began in 2001, it -- we went a good two, two-and-a-half years without services even being on the agenda, and that wasn't for lack of fighting to put it there. And I was very pleased that eventually it became a priority and we started the Services Subcommittee, and when the IACC was -- when the Combating Autism Act was passed in 2006, which created this latest iteration of the IACC, it was an immediate consideration and action that there would be a Services Subcommittee and that services would be at the table, and then we included all the relevant Federal agencies that are dealing with services across the life span with 11 autism. I want to thank you all for being here and taking the time for being here. Just so that you know, and also to thank those that are listening by phone, and on the -- and watching us on the web -- these workshops do get a tremendous web -- do have a tremendous web presence. This -- your presentations will be viewed, if it's like what has happened in the past, by hundreds of people over the next few months, and it will -- and that's really one of the purposes of this workshop is that -- so that it has a life of its own, so this information that you are going to be providing to us, will be out there to the public and will be of value to the community. I briefly want to talk about some of the discussions that we had leading up to this workshop, and I -- I -- what -- what I rely on is a conversation I had a few months ago. 12 I was at a conference in the Midwest, and I was keynoting the conference, and as I do normally with my presentations, I leave time near the end for a Q & A. And one of the people that came up to the mic to ask me a question was a mother of a child with autism, a daughter who was five years old, and she was really concerned about the future of services, and what the future would be like for her daughter, and she challenged me to respond on what it should look like and really where we are with services today in the U.S. And my response was that I believe the future is now, with services in the U.S., for people with autism as well as other disabilities. And I say that because we really do know what to do. We know how to serve these people with autism. To simplify it, when we look at the service -- what is required for service delivery in the U.S. today, it 13 basically breaks down into four chunks. The first one is early diagnosis and intensive intervention, and getting those services started early and having a comprehensive, not only medical but educational and behavioral, and then transitioning that child into an education system and providing the supports that they are going to need throughout those young years in the education systems, so that's the second chunk.
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