Federal Legislative Activities in Autism

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1 Federal Legislative Activities in Autism Cathy Pratt, ASA, NATTAP, - Moderator Kim Musheno, AUCD Katy Neas, ES Sharon Pearce, ASA George Jesien, AUCD Agenda Federal Autism Legislation Primary Bills Other Bills under consideration MCHB RFAs 7 announcements Communalities Questions & Comments 2

org AAP The Arc/UCP CEC/DEC 3 NCSL Legislative Summit - LA National Conference of State Legislatures Annual

2 Overview AUCD, ASA, and Easter Seals work together on many issues: health care, employment, education, fiscal policy, family support CCD Autism Task Force, 17 members including: Autism Speaks NACDD NASDE AAP The Arc/UCP CEC/DEC 3 NCSL Legislative Summit - LA National Conference of State Legislatures Annual meeting attended by hundreds of legislators and staff Issue Forum July 25 on Autism sponsored by AUCD, ES, and ASA 4

3 Legislative Issues for 2008 Appropriations DD Act & Family Support Medicaid Rules Community Choice Act CLASS Act Direct Support Professionals WIA/Rehab Act Higher Ed Act ADA Restoration NCLB Reauthorization 5 Primary Federal Autism Legislation Combating Autism Act funding Expanding the Promise for Individuals with Autism Act 6

Political Context Election year More politics than policy Democrats are in majority but not in control 2 vote margin in Senate (51-49) 31 vote margin in House (233-202) 202) Need 60 votes in Senate

4 Political Context Election year More politics than policy Democrats are in majority but not in control 2 vote margin in Senate (51-49) 31 vote margin in House ( ) 202) Need 60 votes in Senate to overcome filibusters But also presents opportunities Making autism an election year hot topic Presidential forum Setting the stage for coming year 7 Combating Autism Act P.L Signed into law Dec. 19,

Combating Autism Act FY 09 Authorization amounts: $129 million for NIH research into causes, diagnosis, early detection, intervention, and treatment $18 million for the CDC s s Disabilities

5 Combating Autism Act FY 09 Authorization amounts: $129 million for NIH research into causes, diagnosis, early detection, intervention, and treatment $18 million for the CDC s s Disabilities Surveillance and Research Program $42 million to HRSA to increase awareness, reduce barriers to screening and diagnosis, promote evidence- based interventions for individuals with autism, and train professionals CCD working to fully fund CAA 9 Expanding the Promise to Individuals with Autism Act S Sens. Hillary Clinton (D-NY) and Wayne Allard (R-CO) 20 co-sponsors (4R, 2 I, 14D) H.R Reps. Mike Doyle (D-PA) and Chris Smith (R-NJ) 112 co-sponsors (26R, 86D) 10

6 Expanding the Promise Act Increase the supply of services Decrease the time between diagnosis and service delivery Increase the supply of health care professionals State TA & State Coordination National technical assistance center 11 Expanding the Promise Act Need more co-sponsors Especially Members of: Senate Health, Education, Labor and Pensions (HELP) and House Energy and Commerce Committees Asking for hearing and markup 12

7 TEACH Act Teacher Education for Autistic Children Act of 2007 or TEACH Act H.R introduced on May 17, 2007 by Rep. Smith (R-NY) and Doyle (D-PA) and 9 co-sponsors referred to House Ways and Means Committee Aims to increase the number of teachers and paraprofessional teaching assistants with expertise in autism spectrum disorders by providing a refundable tax credit for qualified education expenses of such teachers and paraprofessional teaching assistants. 13 Empowering Children with Autism through Education Act Establishes a task force to identify and disseminate evidence-based educational strategies and promising best practices. Rep. Yarmouth (D-KY) introduced H.R on June 7, co-sponsors. Intended to integrate into reauthorization of NCLB Act. 14

8 Global Autism Assistance Act Introduced in House of Representatives by Rep. Chris Smith (R-NJ) and Mike Doyle (D-PA) on February 14 th and by Senator Norm Coleman (R- MN) on April 2 nd. H.R cosponsors S No Cosponsors Establishes a global health and education grant program related to autism spectrum disorders and provide support to families, educational institutions, clinics and medical centers in developing nations. 15 Fairness in Autism Treatment Act Introduced by Congressman Robert Wexler (D- FL) on January 16 th, 2008 with 5 cosponsors. Amends the Employee Retirement Income and Security Act of 1974 (ERISA) to require self- insured large employers plans and other private employer-sponsored plans to provide medical and surgical benefits to cover Autism services for children up to age

9 Fairness in Autism Treatment Act Requires the health benefit plans under ERISA to cover therapeutic, respite and rehabilitative care for the treatment of autism for children up to age 22. Extends coverage protection to families who reside in states that do not mandate coverage for autism services, and must provide parity in services; thus, plans cannot charge higher co-pays or deductibles for these services and may not cap services at a lower limit than other medical or surgical benefits. Provides an exemption for small employers with 50 or less employees. 17 Helping HANDS for Autism Act Introduced by Senator Robert Menendez (D- NJ) on April 30, 2008 no cosponsors yet. Creates a grant program to provide autism navigator services to help families of individuals with autism spectrum disorders navigate the range of health, education, housing and social services that are often available to individuals on the autism spectrum. 18

10 Helping HANDS for Autism Act Provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders in assisting individuals with autism and other cognitive behavioral disabilities and, provides grants to states and local government to support training of first responders. Creates a task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. 19 Amendment to National Defense Authorization Act Sponsored by Congressman Joe Sestak (D-PA). Provides additional health care coverage for military families who have children with autism by increasing the current cost-share share program limit for dependant children of military personnel who have been diagnosed with autism from $2,500 to $5,000. Was passed en bloc by unanimous consent. Working with Senators to see it included in Senate package. 20

Online Resources ASA: www.autism-society.org society.org Easter Seals: www.easterseals.com AUCD: www.aucd.org Consortium for Citizens with Disabilities Autism Task Force: www.c-c-d.

11 Online Resources ASA: society.org Easter Seals: AUCD: Consortium for Citizens with Disabilities Autism Task Force: 21 Combating Autism Act Initiatives (CAAI) Funded through MCHB of HRSA Section 399 BB of Law Released relatively quickly after appropriations bill was signed: Dec. 26, 2007 Due end of June or early July Quick Turn Around to get funding out by Sept

12 Seven RFAs!! 1. State Implementation Grants for Improving Services for Children and Youth (6) 2. Autism Intervention Research Network- Physical Health & Behavioral Health (1 each) 3. LEND Competition for New Programs (4) 4. LEND Expansion (Supplemental Funding) (17) 5. National Interdisciplinary Training Resource Center 6. State Public Health Coordinating Center For Autism 23 State Implementation Grants Purpose access to comprehensive, coordinated health care and related services Implement an existing state plan to improve system of services Partnership between professionals and families Access to medical home with subspecialties and community- based services Access to health insurance and financing Early & continuous screening Community services Transition to adults health care 24

13 State PH Coordinating Center Coordinate with State Autism Demonstrations Conduct environmental scan needs/gaps State PH, Title V, CSHCN, other health programs Resource Center informational resource Public Health Framework for policy Technical assistance to state demos Annual grantee meeting Participate in Evaluation 25 Autism Intervention Research Network Physical & Behavioral To establish and maintain a network infrastructure to conduct research Evidence based practices for interventions Evidence based guidelines and validate tools Disseminate critical information to health professionals and families 26

27 New LENDs Purpose: to improve the health of infants,

developing, neurodevelopmental and other related

of professional disciplines to assume leadership roles

14 27 New LENDs Purpose: to improve the health of infants, children, and adolescents who have, or are at risk for developing, neurodevelopmental and other related disabilities by preparing trainees from a wide variety of professional disciplines to assume leadership roles and to ensure high levels of interdisciplinary clinical competence. 28

15 Objectives advancing the knowledge & skills of the full range of child health professionals to improve health care delivery systems; providing high-quality interdisciplinary education which emphasizes the integration of services; Providing health professionals with the skills needed to foster a community-based partnership of health resources and community leadership; and promoting innovative practice models that enhance cultural competency, partnerships among disciplines, and family-centered approaches to care. 29 And interdisciplinary training opportunities in autism to diagnosis or rule out individuals with ASD or other developmental disabilities. receive an appropriate balance of academic, clinical, and community opportunities; are culturally competent; ethnically diverse; demonstrate capacity to provide evidence-based interventions; and demonstrate an ability to use a family-centered approach 30

16 LEND Expansions Purpose increase diagnosis of or rule out autism Conduct needs assessment Support training of medium and long term trainees Diagnose or rule out Provide evidence based interventions Participate in research to develop & validate screening tools Disseminate information 31 National ID Training Resource Center TA to LENDs and DBOs Identify and disseminate strategies and resources (i.e. guidelines, promising research and practice models) Conduct data analysis and management activities Providing MCH Training program coordination activities Advance systems development strategies among Annual Grantee Meeting Participate in National CAAI Evaluation 32

17 Common Themes & Elements Collaboration among CAAI partners & other partners i.e. Title V, PH Part C, CDC, etc Autism and related Developmental Disabilities throughout Need for data and evaluation of effort Cultural Competence and Family- Centered Three years funding Sunset provision in law Direct result of CAA Legislation & Appropriations 33 Resource 34

18 Questions? 35 Strategies for Systems Change and Development Regional Meetings (Act Early Regional Summit) enhancing the capacity of states in the early identification, assessment, service coordination and provision of services for young children with ASD and related developmental disabilities a) Convene stakeholders to identify opportunities, challenges, and barriers to address the needs of families and children with ASD and related developmental disabilities. Stakeholders include representatives state and local government, service providers, advocacy groups and UCEDDs & LENDS. b) Foster state teams that are effective in enhancing (or initiating, in some situations) state-wide systems for identification, diagnosis, service provision and coordination for families and children with ASD c) Host 3 Regional Summits in the next year d) Disseminate the findings and progress of Regional Meetings at national forums e) Create a database of State Legislation on ASD Enhance and develop strategic partnerships with federal agencies,, key collaborating grassroots advocacy organizations, and national projects and initiatives in the area of ASD

Federal Legislative Activity related to Autism. Kim Musheno Act Early Summit --October 2009

Federal Legislative Activity related to Autism Kim Musheno Act Early Summit --October 2009 Autism Treatment Acceleration Act S. 819 introduced by Sen. Durbin, Casey (D-PA), and Menendez (D-NJ) on April