AUCD: Update on Current

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AUCD Update on Current Future Activities

• LEND Directors Meeting
• April 23 24, 2008
• Washington D.C.

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Current Legislative Picture What is going on?..
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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

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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

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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

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Presidents Budget- February, 2008

• The Good
• DD Programs flat funded no cuts
• Kept last years 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

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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

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Next Years 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

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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

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Presidents 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.
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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

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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

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Resources

• Lots of Work Up Ahead - Resources
• Check out AUCDs 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

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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

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AUCD Work Areas Technical Assistance Contracts

• MCHB LENDs
• ADD UCEDDs
• NCBDDD of CDC Cooperative Agreement
• NICHD EKS-IDDRC
• SSA - PMU

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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 DBPs use of NIRS
• Trainee activities virtual trainee, blog
• LEND competitions current and new

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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

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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

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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

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Act Early Regional Autism SummitsKansas 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

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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

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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)

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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

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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

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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

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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

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Comments, Observations..
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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

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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.

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Number of links recommended for addition or
deletion by content area on the
DisabilityInfo.gov website
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Example of an Experts Spreadsheet File