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AUCD: Update on Current & Future Activities

This update provides information on the current legislative picture, budget and appropriations, combating autism funding, and other activities discussed at the LEND Directors' Meeting.

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AUCD: Update on Current & Future Activities

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  1. AUCD: Update on Current & Future Activities LEND Directors’ Meeting April 23 & 24, 2008 Washington D.C.

  2. Current Legislative Picture – What is going on?…..

  3. Budget and Appropriations Combating Autism Funding • $6 million more for LENDs • Internal Competition for supplements for up to half of current LENDs • Up to 4 New LENDs • Increased Technical Assistance • Early orientation meeting likely in late summer or fall

  4. Other Combating Autism Bill Funding • $6 million for Evidence Based Research for Interventions • Two Research Networks • Physical/Medical Aspects • Behavioral Aspects • State Demonstrations – 5 to 6 • Title V/CSHCN • TA to States • Opportunity • Possible Resource Center

  5. More Good News Good News • $3.7 million more for UCEDDs • $30,000 over last year, $20,000 over authorization • National Training Initiatives • Family Support Resource Center

  6. President’s Budget- February, 2008 The Good • DD Programs – flat funded – no cuts • Kept last year’s increase! The Bad and the Ugly • Major Cuts to HRSA programs • Health Professions, Hearing Screening, Medical Education • Rescission of 1.73% across programs • Major Cuts to CDC & Small Increase for NIH

  7. The Coming Year - ?? • Budget Process up in the Air – Options • Complete Budget Process before elections, or • Wait for the next President; CR – until February • Most likely – Budget Bill this year – • will set starting point for when new Congress begins • Pent up pressure to fund: NIH, CDC, HRSA programs – because of previous cuts

  8. Next Year’s Ask • $2 Million for LENDs – Authorized Amount • Up to 5 more Autism Supplements • One or two new LENDs • Fully Funding Block Grant- $850 million • $4 Million for UCEDDs • Minority Serving Institution Partnerships • National Training Initiatives • COLA

  9. Accomplishments for the Year • Congress much more aware of UCEDDs and LENDs • LENDs mentioned in Presidents Budget- a 1st! • Your visits & letters have had an impact • Working with major other disability groups has paid off • ASA, Easter Seal, Fragile X, Friends of NICHD, Health Coalition, CDC-EPG group, CCD, AMCHP, Autism Speaks

  10. President’s Budget ; February 4, 2008 Autism and Other Developmental Disorders: The Budget includes $36 million to continue the new effort to target Autism and Other Related Developmental Disorders. This request supports the HRSA Leadership Education in Neurodevelopmental and Related Disabilities (LEND) and the Developmental Behavioral Pediatric (DBP) training programs and Combating Autism grants. The LEND and DBP programs provide interdisciplinary training to enhance the clinical expertise and leadership skills of professionals dedicated to caring for children with disabilities, including autism. The Combating Autism grants will reduce barriers to early screening and diagnosis by: ♦ Providing information, education, and coordination; ♦ Promoting research into evidence-based practice for interventions and for the development of reliable screening tools and intervention guidelines; ♦ Promoting early screening and intervention; and ♦ Training providers to diagnose and treat individuals with autism spectrum disorder and other developmental disorders.

  11. Current Legislative Affairs Activities • Higher Education Act • Working with Senate & House staff and NDSS • Model demonstration projects • Technical Assistance Center • Work-study opportunities for students with ID • Expanding the Promise Act • Supplemental grants to UCEDDs • $200,000 for Centers to provide training, TA, dissemination, and services, and address the unmet needs of individuals with autism • authorizes funds to establish up to four new minority serving UCEDDs to provide interdisciplinary training and services for individuals with autism and related developmental disabilities

  12. Legislative Activities continued • DD Act – Likely early in next Congressional Session • Raise Authorization Levels • Minor modifications to language • Possibly no changes • Other possible amendments – waiting in the wings

  13. Resources Lots of Work Up Ahead - Resources • Check out AUCD’s Action Center for • Action alerts and sample letters • Contact info on congressional delegation • Read full text of legislation of interest • Get background info on Policy webpage • Read In Brief for legislative updates • Stay Tuned for Webinars

  14. Current Federal Landscape • MCHB • Personnel stable thus far • Reaching out to work collaboratively • Data, impact, results important • ADD • Commissioner – there for the duration & excited about additional funding • 17 continuations this year – hopefully in May • Additional staff - project officers • NCBDDD • Edwin Trevathan: New Director • Health and Disability Division Head position open • New positions for science leads & some restructuring • ED • Tracy Justesen – OSERS Assistant Secretary • Richard Fisher – NIDRR – Acting Director • Patty Guard – OSEP – Acting Director • SSA • Michael J. Astrue- new Commissioner • David Rust - Named new Deputy Commissioner

  15. AUCD Work Areas: Technical Assistance Contracts • MCHB – LENDs • ADD – UCEDDs • NCBDDD of CDC – Cooperative Agreement • NICHD – EKS-IDDRC • SSA - PMU

  16. MCHB – LENDs – Crystal • Monitoring & OPR Visits: • SD, MA, HI, OH, PA, CA, NY • Performance Measures revisions • Leadership Competencies Validation • Regional LEND meetings: NE, OH, DC • PPC, LEAH & DBP’s use of NIRS • Trainee activities – virtual trainee, blog • LEND competitions – current and new

  17. ADD – UCEDDs – Maggie • Workgroups – Annual Report, New Director Orientation & Hiring Variables • TA Meeting – June 12 & 13, Washington DC • Onsite TA: IN, CA, NY, GA, WA & AZ • National Training Initiative Consultation Meeting • Promising Practice Briefs • NIRS training and revision • Resource Center

  18. AUCD-NCBDDD Cooperative Agreement- Sue Research • 14 Current RTOI projects • 4 new RTOIs Announced- Feb. 15 • Epilepsy (1) • Physician Training (3) Education • 3 current Fellows working in the area of SB, DD, & Learn the Signs, Act Early Campaign • One new fellowships in Autism Dissemination • Health and Disability Digest • Webinars, Workshops, & Symposiums

  19. Scientific Peer Reviewers Needed • AUCD needs scientific peer reviewers for the 2008 RTOI applications in: • Epilepsy, Developmental Disabilities, and Epidemiology • General and Family Physician Education, Early Intervention, and Early Childhood Special Education Services • Early Hearing Detection and Intervention • Fragile X Syndrome

  20. Act Early Regional Autism Summits:Kansas City & Albuquerque • Purpose: To bring together state stakeholders • Hosted and facilitated by UCEDDs/LENDS • Shared challenges and promising practices • Used Logic Model for developing action plans • Possible follow-up funding and support • Testing prototype to be expanded next year

  21. NCBDDD Activities Next Year • Another Round of RTOIs • Cooperative Researcher Awards • Fellowship • Act Early Regional Summits – 3 regions • Hosted by LEND/UCEDDs • Follow-up Support • Selection in early summer • State Disability & Health TA • 16 Programs

  22. Act Early Regional Summit ProjectSuggested STATE TEAM FORMATION Part C of IDEA State Services State Preschool Special Education –Section 619 of IDEA State Children with Special Health Care Needs – Title V State Developmental Disabilities Office (MRDD) State Public Health State Child Care Resource and Referral Child Foster Care Bureau State Head Start and Early Head Start American Academy of Pediatrics State Chapters State Council on Developmental Disabilities State Autism Organization – e.g. Autism Society of America, Easter Seals, Network of Autism Training and Technical Assistance Programs(NATTAP) etc. State Parent Organization – e.g. Parent Training Center, Family Support, Family Voices, or Parent Health Information Center Provider Representative LEND/UCEDD Other? (to be recommended by LEND/UCEDD)

  23. National Service Inclusion Project (NSIP) The Institute for Community Inclusion's (MA UCEDD) National Service Inclusion Project awarded three $20,000 grants. The primary objective: • measurable increases in the application, enrollment, and retention of service members or volunteers with disabilities • Partnering with a national service program and the State Commission/State Office should allow for impact on local, regional, and/or state-wide programs.  The UCEDD award recipients include: • Idaho • Iowa • New York

  24. SSA- Pediatric Medical Unit Initiative • 7 Sites Terminated on December 31, 2007 • Last site (TN) terminated April 15 • Central office shut down in May • Caused by: • Change in leadership • Refocusing of activities • No reflection on quality or satisfaction of work • Completing data analysis and reporting

  25. Annual Meeting 2008 • November 9-12, 2008 – Washington DC • Call for Participation – Submissions due June 20th • LEND Directors Meeting • Trainee Stipends • More fun and knowledge than you can imagine

  26. Continuing Opportunities for the coming year • Early Identification of Autism & Related DD • Minority Serving Institutions • Family Support • Post Secondary Education • Transition & Employment • Adult Services • Strategic Partnerships • Disability Groups e.g. ASA, Easter Seals, etc • Other Associations – AAIDD, NASDDDs, etc

  27. Comments, Observations…..

  28. DisabilityInfo.gov Project • 8 week timeline (Dec 07-Jan 08) • Gap analysis of 9 content areas • Used 9 content experts from the network with central office staff time • For each content area, an expert addressed 3 questions: • Does the section have information gaps, what specific information is lacking that would be useful and valuable to users? • Are there existing links that are outdated or should be replaced or removed because they lack relevance or potential value to site users? • Are there content areas currently within subfolders that should be replaced, renamed, or reorganized to enhance their utility and accessibility? • Content experts • Submitted spreadsheets outlining URLs to add, delete, or move on the site • Provided written commentary and/or participated in a debriefing call to address the sites utility and accessibility

  29. Results: The vast majority of links (88%) were found to be relevant and active. A total of 876 links (12%) were recommended for deletion from the site, based on relevance, their age, or the fact that the links were broken. A total of 658 new links were recommended for addition, representing an 8% increase in links over the current number.

  30. Number of links recommended for addition or deletion by content area on the DisabilityInfo.gov website

  31. Example of an Expert’s Spreadsheet File

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