Transcript AUCD: Future Directions & Opportunities

AUCD: Update on Current & Future
Activities
LEND Directors’ Meeting
April 23 & 24, 2008
Washington D.C.
Current Legislative Picture
– What is going on?…..
Budget and Appropriations
Combating Autism Funding
 $6 million more for LENDs
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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
Other Combating Autism Bill Funding
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$6 million for Evidence Based Research for
Interventions
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State Demonstrations – 5 to 6
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Two Research Networks
 Physical/Medical Aspects
 Behavioral Aspects
Title V/CSHCN
TA to States
Opportunity
Possible Resource Center
More Good News
Good News
 $3.7 million more for UCEDDs
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$30,000 over last year, $20,000 over
authorization
National Training Initiatives
Family Support Resource Center
President’s Budget- February, 2008
The Good
 DD Programs – flat funded – no cuts
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Kept last year’s increase!
The Bad and the Ugly
 Major Cuts to HRSA programs
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Health Professions, Hearing Screening, Medical
Education
Rescission of 1.73% across programs
Major Cuts to CDC & Small Increase for NIH
The Coming Year - ??
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Budget Process up in the Air – Options
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Complete Budget Process before elections, or
Wait for the next President; CR – until February
Most likely – Budget Bill this year –
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will set starting point for when new Congress
begins
Pent up pressure to fund: NIH, CDC, HRSA
programs – because of previous cuts
Next Year’s Ask
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$2 Million for LENDs – Authorized Amount
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Up to 5 more Autism Supplements
One or two new LENDs
Fully Funding Block Grant- $850 million
$4 Million for UCEDDs
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Minority Serving Institution Partnerships
National Training Initiatives
COLA
Accomplishments for the Year
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Congress much more aware of UCEDDs and
LENDs
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LENDs mentioned in Presidents Budget- a 1st!
Your visits & letters have had an impact
Working with major other disability groups
has paid off
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ASA, Easter Seal, Fragile X, Friends of NICHD,
Health Coalition, CDC-EPG group, CCD,
AMCHP, Autism Speaks
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.
Current Legislative Affairs Activities
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Higher Education Act
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Working with Senate & House staff and NDSS
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Model demonstration projects
Technical Assistance Center
Work-study opportunities for students with ID
Expanding the Promise Act
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Supplemental grants to UCEDDs
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$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
Legislative Activities continued
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DD Act – Likely early in next Congressional
Session
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Raise Authorization Levels
Minor modifications to language
Possibly no changes
Other possible amendments – waiting in the
wings
Resources
Lots of Work Up Ahead - Resources
 Check out AUCD’s Action Center for
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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
Current Federal Landscape
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MCHB
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ADD
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Edwin Trevathan: New Director
Health and Disability Division Head position open
New positions for science leads & some restructuring
ED
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Commissioner – there for the duration & excited about additional funding
17 continuations this year – hopefully in May
Additional staff - project officers
NCBDDD
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Personnel stable thus far
Reaching out to work collaboratively
Data, impact, results important
Tracy Justesen – OSERS Assistant Secretary
Richard Fisher – NIDRR – Acting Director
Patty Guard – OSEP – Acting Director
SSA
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Michael J. Astrue- new Commissioner
David Rust - Named new Deputy Commissioner
AUCD Work Areas:
Technical Assistance Contracts
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MCHB – LENDs
ADD – UCEDDs
NCBDDD of CDC – Cooperative Agreement
NICHD – EKS-IDDRC
SSA - PMU
MCHB – LENDs – Crystal
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Monitoring & OPR Visits:
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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
ADD – UCEDDs – Maggie
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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
AUCD-NCBDDD Cooperative Agreement- Sue
Research
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14 Current RTOI projects
Autism
Duchenne
Muscular Dystrophy
Down Syndrome
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4 new RTOIs Announced- Feb. 15
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RTOI Research
Fetal
Disability Areas
Alcohol Syndrome
Spina
Bifida
Education
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Hearing Loss
Epilepsy (1)
Physician Training (3)
Tourette
Syndrome
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3 current Fellows working in the area of
SB, DD, & Learn the Signs, Act Early
Campaign
One new fellowships in Autism
Dissemination
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Health and Disability Digest
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Webinars, Workshops, & Symposiums
Scientific Peer Reviewers Needed
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AUCD needs scientific peer reviewers for the
2008 RTOI applications in:
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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
Act Early Regional Autism Summits:
Kansas City & Albuquerque
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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
NCBDDD Activities Next Year
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Another Round of RTOIs
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Act Early Regional Summits – 3 regions
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Cooperative Researcher Awards
Fellowship
Hosted by LEND/UCEDDs
Follow-up Support
Selection in early summer
State Disability & Health TA
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16 Programs
Act Early Regional Summit Project
Suggested STATE TEAM FORMATION
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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)
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
SSA- Pediatric Medical Unit Initiative
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7 Sites Terminated on December 31, 2007
Last site (TN) terminated April 15
Central office shut down in May
Caused by:
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Change in leadership
Refocusing of activities
No reflection on quality or satisfaction of work
Completing data analysis and reporting
Annual Meeting 2008
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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
Continuing Opportunities for the
coming year
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Early Identification of Autism & Related DD
Minority Serving Institutions
Family Support
Post Secondary Education
Transition & Employment
Adult Services
Strategic Partnerships
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Disability Groups e.g. ASA, Easter Seals, etc
Other Associations – AAIDD, NASDDDs, etc
Comments, Observations…..
DisabilityInfo.gov Project
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8 week timeline (Dec 07-Jan 08)
Gap analysis of 9 content areas
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Used 9 content experts from the network with central office staff time
For each content area, an expert addressed 3 questions:
1.
2.
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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
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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
Content Area
Benefits
Content Expert
Becky Banks, MA
Indiana Institute on Disability and Community (IN UCEDD)
Civil Rights
Judy Emery, MA
JFK Partners ( CO UCEDD)
Community Life Carole Moore-Slater, MS
Vanderbilt Kennedy Center (TN UCEDD)
Education
Mike Sharpe, PhD
Institute on Community Integration (MN UCEDD)
Employment
Health
Housing
Technology
Transportation
David Hoff, MSW
Institute for Community Inclusion (MA UCEDD/LEND)
Susan Havercamp, PhD
Florida Center for Inclusive Communities (FL UCEDD)
Royal Walker Jr., JD
Institute for Disability Studies (MS UCEDD)
Marty Blair, MS
Center for Persons with Disabilities (UT UCEDD)
Uwe Rutenberg, MID
Oregon State University , in association with the Oregon Institute on
Disability & Development (OR UCEDD/LEND)
Results:
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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.
Number of links recommended for addition or deletion
by content area on the DisabilityInfo.gov website
Content
Area
Benefits
Civil Rights
Community Life
Education
Employment
Health
Housing
Technology
Transportation
TOTAL
Reviewed
332
802
889
739
956
1,938
619
748
427
7,450
Number of Links
Recommended for
Addition
Recommended for
Deletion
203
0
12
78
99
5
7
200
54
658
62
103
234
92
271
6
6
85
17
876
Example of an Expert’s Spreadsheet File
Content Area:
Folder:
LINKS TO ADD
Subfolder
Community Life
Accessibility
Business & Service
Provider
Business & Service
Provider
Name of Link to Add
URL
Disability Business and
Technical Assistance Training
Page
http://www.dbtac.vcu.edu/training/index.html
Wheel Me On (multiple listings
on this site)
Business & Service
Provider
ADA Training Resource
Center
Business & Service
Provider
Current political news about
disability legislation (ADA)
LINKS TO REMOVE
Subfolder
Name of Link to remove
Business & Service
Provider
Business & Service
Provider
Business & Service
Provider
Business & Service
Provider
Business & Service
Provider
Description
Training available in variety of formats on ADA and
other disability issues. Site for National Institute on
Disability and Rehabilitation Research.
please add to site that this is for veterans and
military persons with disabilities
One stop for courses, events, tools on the ADA.
Information from the Disability and Business
ttp://www.adagame.org/
Technical Assistance Center.
American Association for People With Disabilities
is dedicated to ensuring economic self-sufficiency
and political empowerment by providing
http://www.aapd.com/News/adainthe/indexada_res information about legislation and other political
tore.php
news.
URL
http://www.accessAccess Currents Newsletter - board.gov/news/Access%20Currents/SeptSeptember/October 2007
Oct07.htm
Description
technical, not useful to the average user
Access Board Trainings
http://www.access-board.gov/training.htm
other resources provide better ADA training
Accessible Format for Persons
Who are Blind or Visually
http://www.brailleplus.net/visually_impaired_resour
Impaired
ces/Glossary/Accessible_Format/
limited info about accessibility & braille only
duplication of another link in this section that is
Alternative Financing
more readable: Rehab Engin & Assistive Techn
Technical Assistance Project http://www.resna.org/AFTAP/index.html
Soc of North America Technical Assistance Project
Accessibility Guidebook on
http://www.fs.fed.us/recreation/programs/accessibil
Outdoor Recreation & Trails ity/htmlpubs/htm06232801/lib_card.htm
not useful - description of library card