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About the Autistic Self Advocacy Network Autism Policy & Advocacy • Autistic people, cross-disability advocates, non-autistic family Ari Ne’eman members, professionals, educators, President and friends The Autistic Self Advocacy Network • th Advancing principles of disability 2013 H St. 7 Floor • Washington, DC 20035 rights movement for Autistic people Voice: (202) 596-1056 www.autisticadvocacy.org • Systems change and policy advocacy and leadership programming
Recent Federal Policy Developments
Passage of the Autism CARES Act of Terminology Issue: 2014
Person-First vs. July 2014 CMS EPSDT & Autism Identity-First Language Guidance January 2014 CMS Home and Community Based Settings Regulation
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Combating Autism Act of 2006
Rhetorical emphasis on ‘eliminating’ autism through causation research and prevention
Provided statutory authorization to a variety of existing autism and developmental disability programs (i.e: LEND, CDC Health Surveillance)
Increased autism research funding
Autism CARES Act Schakowsky Letter
Changed rhetorical focus Signed by Reps. Schakowsky, Speier, Castor, Duckworth & Tonko and sent to HHS in October Slight increase in representation for self- 2014 advocates on the IACC Called for greater self-advocate representation, shift in autism research Recognition of the need for greater funding patterns emphasis on adult services
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Excerpt from Schakowsky Letter
“Individuals with autism are not adequately represented in federally-run programs, such as the Leadership and Education in Neurodevelopmental Disabilities (LEND) programs, which train Autism is not going students interested in careers in disability services and supports.” away - nor are Autistic “Very little autism funding is currently devoted to the daily needs of individuals with autism and their families. For example, according to people the IACC's Portfolio Analysis Web Tool, in 2010 only 2.4% of NIH's autism research budget went towards research on improving the qualityo f services and only 1.5% went towards research on the needs of autistic adults.”
July 2014 CMS EPSDT Guidance
Requires states to shift “autism services” out of 1915(c) and into EPSDT benefit What do we mean Explicitly states that this is not limited to – and when we say “autism may not even necessarily mean – Applied Behavioral Analysis services”?
Requiring states to “reboot” their behavioral health services to autistic children and youth
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Behavioral Interventions Strong emphasis on Applied Behavioral Analysis in much state advocacy
Behavioral vs. Delivered by a BCBA or a para working under their Developmental direction Emphasis is on “indistinguishability from peers”, to Approaches quote Lovaas
Many self-advocates & families are concerned that many ABA providers utilize aversives
Institute for Education Sciences: What Developmental Approaches Works Clearinghouse Typically delivered by an OT, SLP or sometimes Psychologist
Often play based and/or parent-mediated interventions
Broad range of options: DIR/Floortime, SCERTS, TEACCH, etc.
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Institutional Census, 1880-present
What is the goal of autism service- provision?
Early 20 th Century Institutional Population
• Mostly not the severely disabled! – Orphaned or homeless children – Sexually promiscuous teens – Unwanted babies Who Went Into Institutions – Juvenile Delinquents th in the Early 20 Century? • Had schools, bands – some even had a football team playing the local high school • “Feeble-mindedness” was a popular label • “Morons”, “Imbeciles” and “Idiots” were technical terms • “High Grade” and “Low Grade” Residents • 3 in every 1,000 Americans was in an institution
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Missouri Medical Association Presidential Address, May 1918
Skill Changes for People with I/DD Studies on ADL Impact of Leaving Institutions for People with I/DD Leaving Institutions
Lakin, K.C., Larson, S. A., Kim, S. (2011). Behavioral outcomes of Deinstitutionalization of People with Lakin, K.C., Larson, S. A., Kim, S. (2011). Behavioral outcomes of Deinstitutionalization of People with Developmental Disabilities: Third Decennial Review of Studies, 1977-2010 . Policy Research Brief, 22 (1) Developmental Disabilities: Third Decennial Review of Studies, 1977-2010 . Policy Research Brief, 22 (1)
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HCBS Settings Requirements: • The setting is integrated in and supports full access to the greater community; • Is selected by the individual from among setting options; • Ensures individual rights of HCBS Settings Regulation privacy, dignity and respect, and freedom from coercion and restraint; • Optimizes autonomy and independence in making life choices; and • Facilitates choice regarding services and who provides them.
Provider Owned Settings Settings Presumed to Have Requirements Institutional Qualities • The individual has a lease or other • those in a publicly or privately- legally enforceable agreement owned facility that provides providing similar protections; inpatient treatment; • The individual has privacy in their • on the grounds of, or immediately unit including lockable doors, adjacent to, a public institution choice of roommates and • that have the effect of isolating • freedom to furnish or decorate the individuals receiving Medicaid- unit; funded HCBS from the broader • The individual controls his/her own community of individuals not schedule including access to food receiving Medicaid-funded HCBS at any time; • Gated communities • The individual can have visitors at • Farmsteads any time; and • Settings that “co-locate” • The setting is physically accessible. multiple services
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What do we mean when we talk about “the community”?
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Questions?
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