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 AppropriationsCombating 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

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

More Good NewsGood News $3.7 million more for UCEDDs

$30,000 over last year, $20,000 over authorization

National Training Initiatives Family Support Resource Center

President’s Budget- February, 2008The 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

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

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

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

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 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

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

ResourcesLots 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

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

Current Federal Landscape

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

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

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

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

Duchenne Muscular Dystrophy

Fetal Alcohol Syndrome

Hearing LossTourette

Syndrome

SpinaBifida

Down Syndrome

Autism

RTOI Research Disability Areas

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

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

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

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)

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 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

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

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

Comments, Observations…..

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:

1. Does the section have information gaps, what specific information is lacking that would be useful and valuable to users?

2. Are there existing links that are outdated or should be replaced or removed because they lack relevance or potential value to site users?

3. 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

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.

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

Example of an Expert’s Spreadsheet FileContent Area: Community LifeFolder: Accessibility

LINKS TO ADDSubfolder Name of Link to Add URL Description

Business & Service Provider

Disability Business and Technical Assistance Training Page http://www.dbtac.vcu.edu/training/index.html

Training available in variety of formats on ADA and other disability issues. Site for National Institute on Disability and Rehabilitation Research.

Business & Service Provider

Wheel Me On (multiple listings on this site)

please add to site that this is for veterans and military persons with disabilities

Business & Service Provider

ADA Training Resource Center ttp://www.adagame.org/

One stop for courses, events, tools on the ADA. Information from the Disability and Business Technical Assistance Center.

Business & Service Provider

Current political news about disability legislation (ADA)

http://www.aapd.com/News/adainthe/indexada_restore.php

American Association for People With Disabilities is dedicated to ensuring economic self-sufficiency and political empowerment by providing information about legislation and other political news.

LINKS TO REMOVESubfolder Name of Link to remove URL DescriptionBusiness & Service Provider

Access Currents Newsletter - September/October 2007

http://www.access-board.gov/news/Access%20Currents/Sept-Oct07.htm technical, not useful to the average user

Business & Service Provider Access Board Trainings http://www.access-board.gov/training.htm other resources provide better ADA training

Business & Service Provider

Accessible Format for Persons Who are Blind or Visually Impaired

http://www.brailleplus.net/visually_impaired_resources/Glossary/Accessible_Format/ limited info about accessibility & braille only

Business & Service Provider

Alternative Financing Technical Assistance Project http://www.resna.org/AFTAP/index.html

duplication of another link in this section that is more readable: Rehab Engin & Assistive Techn Soc of North America Technical Assistance Project

Business & Service Provider

Accessibility Guidebook on Outdoor Recreation & Trails

http://www.fs.fed.us/recreation/programs/accessibility/htmlpubs/htm06232801/lib_card.htm not useful - description of library card