Leadership in the National UCEDD Network

Strategic Planning Preparation Mailman Center for Child Development

10/1/13

1

2

Presenters

George Jesien Dawn Rudolph

3

4

The National UCEDD Network

Funded by AIDD

Supported by AUCD

Dawn Rudolph, MSEd AIDD Technical Assistance Director, AUCD

5

Why Are You Here?

Original Concept from John F. Kennedy’s Panel on Mental Retardation

To Address: • Critical shortage of personnel • Need for research & statistical data to

inform policy decisions • Role of numerous governmental

agencies • Shortage of facilities • Lack of coordination

Evolution 1961-1994

Early Expected Characteristics

• University-based units that reached out to community

• Linked university resources with disability community

• Would provide: – Interdisciplinary training – Service – Clinical research

AUCD,

50 Years of History

• 1963: Kennedy signed DD Act, creating University Affiliated Facilities

• 1970: DD Act reauthorization establishes DD Councils

• 1975: Protection & Advocacy, Projects of National Significance established

• 1987: UAF changed to UAP (Programs) • 2000: UAP changed to UCEDD, focus on community,

individualized lifespan services, rights, areas of emphasis, data, and network collaboration

• DD Act of 2000 and federal regulations

Major Areas of Contribution in National Disability Initiatives

• Early Intervention • Preschool & Child Care • Special Education • Access to General

Curriculum • Literacy • School-Work Transition • Family-Centered Care • Inclusive Education • Assistive Technology • Post Secondary Education

• Screening & Identification • Maternal & Child Health • Child Abuse & Neglect • Self-Advocacy &

Self Determination • Community-based Services • Housing • Health Promotion • Supported Living • Employment • Aging

9

Administering Agency

U.S. Dept. of Health & Human Services

Administration on Aging

Administration on Intellectual and Developmental

Disabilities

Center for Disability and Aging Policy

Administration for Community Living

DD Network Partners funded by AIDD

11

UCEDD Role

• Serve as resource for local, state, national and international agencies, organizations, and policy-makers concerned about people living with developmental and other disabilities and their families

• Interdisciplinary University-based Center – Location within University varies across network

• Leverage core funding to obtain additional grants and

contracts to expand scope of efforts

• Bridge between University and community with evidence-based practice

What Sets a UCEDD Apart?

• University has entered into relationship with AIDD • UCEDD is a designation, not just another grant

– 2-way relationship – Infrastructure for leveraging

& growing Center – Part of a national network

• Identity as UCEDD is critical in all projects • AIDD expectations are implemented individually

by each UCEDD according to state needs, Center expertise, partnerships, etc.

13

UCEDD Core Functions (Title 1, Subtitle A & D of DD Act)

• Provide interdisciplinary pre-professional & continuing education

• Provide training & technical assistance – Community, state & national – Individuals, families, professionals, policymakers

• Demonstrate exemplary clinical, educational & community services

• Conduct basic & applied research – Public policy analysis – Evaluation

• Disseminate best practices & research results

14

UCEDD 8 Areas of Emphasis (Title 1, Subtitle A & D of DD Act)

• Quality assurance activities • Education • Early intervention • Child care • Health-related activities • Employment • Housing • Transportation • Recreation • Other areas such as quality of life, cultural diversity, assistive

technology, leadership, etc.

15

Art by Sarah Bauer

Range of Activities Across Lifespan (Title 1, Subtitle A of DD Act)

16

Lifespan Family Research Program, Waisman Center

Individual UCEDD Activities

AGE ACROSS LIFESPAN

CORE FUNCTIONS

AREAS OF EMPHASIS

AUCD/URC Technical Assistance (Title 1, Subtitle D of DD Act)

• Purpose is to improve UCEDD: – Program performance – Statutory compliance – Program outcomes

Information Dissemination

Meetings, Conferences

Data Collection

On-site Visits

Websites, Newsletters

Consultation & Training

Communities of Practice

AUCD/URC Projects

• UCEDD Resource Center • National Information Reporting System

– Public NIRS search • AUCD Directory • Councils, SIGs, Listservs, Events, Pubs • Allies in Self Advocacy • Leadership development • Response to emerging issues

About LENDs

20

Leadership Education in Neurodevelopmental & Related Disabilities (LEND)

• MCHB funded: work with Title V agencies • Ensure health care professionals have leadership skills &

most current knowledge • Provide interdisciplinary clinical services at university &

community settings • Address unique needs children with special health care

needs & their families • Promote cultural competency, family-based care &

interdisciplinary partnerships

21

LEND 14 Core Disciplines

• Pediatrics • Nursing • Special Education • Social Work • Audiology • Pediatric Dentistry • Nutrition • Psychology

• Speech & Language • Health Administration • Occupational Therapy • Physical Therapy • Parents & consumers • Genetics (many include)

22

AUCD

A National Network

23

Three National Networks of Centers

• 67 University Centers for Excellence in Developmental Disabilities (UCEDDs) • 43 Leadership Education in Neurodevelopmental and Related Disabilities

(LEND) Programs • 15 Intellectual and Developmental Disabilities Research Centers (IDDRCs)

24

UCEDD/LEND Training and Services Provided in FY12

• 3,851 students and fellows trained in programs • 1,220,749 people received community training

and technical assistance • 239,046 individuals received clinical,

demonstration, and other model services • 55,777 individuals received diagnostic services • 81,373 people were screened for Autism

Spectrum Disorders and other Developmental Disabilities

25

26

UCEDD Leadership: Roles & Functions

George Jesien, Ph.D.

27

28

29

Work and Personal Experience

Discipline-Specific and Interdisciplinary Knowledge

Spheres of Influence

policies

practices/processes

organizations

colleagues

staff

workplace

institution

community state Nation

laws

Definitions of Leadership • "Leadership is the process of persuasion and example by

which or leadership team induces a group to take action that is in accord with the leader's purpose, or the shared purposes of all."

-John W. Gardner • "...individuals who establish direction for a working

group, who gain commitment from members of the group to this direction, and who motivate group members to the achievement of the direction's outcomes." -Queensland Health

31

UCEDD Leadership

UCEDD Leadership influences, promotes and moves individuals, practices and policies

toward the achievement of the ADA and DD Act vision of full participation and integration

of all people with disabilities into the social and economic fabric of our society.

32

33

University Administration

Families & Individuals

with disabilities

Colleagues &

Employees

Trainees & Students

Community Organizations

State Agencies

Legislature

Federal Agencies

Public

Spheres of Effort or Activity

34

UCEDD

University

Administration

Community:

Local &

State State Agencies

Colleagues &

Employees

Legislature

Families &

Individuals

With

Disabilities

Public

Federal Agencies

University Community • Intra & Interdepartmental engagement &

responsibility • Administrative Report – Provost, Dean, Dept. Head • Grants & Contract Administration – Business Office • Recruitment, Diversity, Hiring, Personnel Polices,

Merit • Space & location • Promotion & Tenure • Individual research agendas & publications • Liaison with other state campuses–Often untapped

35

Colleagues & Employees • Communication and information exchange

o Vertical & horizontal

• Active networking, partnering & collaboration o In and outside of Center

• Professional Development opportunities • Matching talent with job responsibilities & projects • Coaching, mentoring & accountability • Balance supervision, accountability & flexibility • Setting a tone & style of interaction • Provide opportunities to celebrate successes • Creating excitement and consistency • Diversity – racial, ethnic, disability & gender

36

Families and PWD • Welcoming context • Provision of needed supports including monetary • Growing the network of those involved • Seeking & supporting diversity • Problem solving issues as they come up • Ensuring meaningful involvement & participation • Seeking their counsel & experience • Creating and supporting an effective CAC

37

Students & Trainees • Engage them in designing & reviewing their

experiences and curricula • Provide opportunities for leadership experiences • Offer community based experiences • Provide a range of networking opportunities

o Allow them to lead and accept responsibilities

• Connect them to experiences outside of their departmental and discipline specific contexts

• Provide an array of possible mentors • Work to capture their passion, energy & career

interests

38

Community Organizations

• Develop a close relationship with DD Council’s & P&A’s • Network with other key disability organizations • Participate in strategic events & initiatives • Consider community organizations as grant partners • Look for ways to involve students in their activities • Join or initiate the building of coalition of orgs.

o Leaders of leaders

• Invite leaders to be speakers, panelists at Un. events • Conduct events in different parts of the state • Explore continuing degree opportunities for

management staff

39

State Agencies • Establishing meaningful dialogue & relationship • Knowing current challenges & future directions • Tracking federal policies that will impact state

agencies • Being available & flexible to address emerging

issues • When possible assist in grant & plan development • Be able to identify & bring stakeholders to the table • Serve as an “honest broker” • Understand your advantages: longevity, stability,

flexibility & data driven

40

Legislature • Work with your university to understand rules &

promote advantages of your involvement • Develop relationships with members & staff before a

crises • Learn about those who have personnel experience

with disability • Work to become a resource for information &

analysis; send pertinent info • Identify someone who will track issues at state

legislature & consider feasibility of policy position • To extent possible get to know federal members too

41

Public • Reflect & discuss with staff on the image you want • Develop public relations strategies: press releases,

info grams, social media, newsletter, etc. • Develop relationship with local/state news

organizations • Develop feasible events calendar for your center

that is open to local public • Contribute to news outlets, public radio,

newspapers about projects, successes and people • Develop website that provides current information • Make your web presence dynamic & real time

42

Federal Agencies • Pick your targets & be open to opportunities • Work to get ahead of the RFP bind; ie legislation,

initiatives, policy shifts • Develop personal relationships at multiple levels: political

& career • Develop grant writing process; teams, budgeting, boiler

plate, templates if possible • Encourage staff to look for opportunities • Use national conferences to identify directions & people • Volunteer to review; • Look for partners & possible collaborators • Present & showcase at national level

43

Does UCEDD have to do all of this?

• No • But yes to some extent…….. • Use team members to cover areas • Also, don’t have to do all at the same time • Each adds:

o to your capacity, o potential for impact and o ability to secure the resources to carry out your

mission • Trick is to have balance that can shift

44

10/7/2013 45

Local level Impact

State

National

Suggestions • Seek out other centers as possible partners and

collaborators – build & nurture your network • Find ways to participate in state and national

activities, events & workgroups • Use AUCD & other associations

o They are curators of information- they aggregate, organize & simplify

• Look for ways to incorporate emerging technologies

• Periodically evaluate, seek feedback, revise, re-invent

46

47