Leadership in the National UCEDD Network
Strategic Planning Preparation Mailman Center for Child Development
10/1/13
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The National UCEDD Network
Funded by AIDD
Supported by AUCD
Dawn Rudolph, MSEd AIDD Technical Assistance Director, AUCD
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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
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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
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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.
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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
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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.
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Art by Sarah Bauer
Range of Activities Across Lifespan (Title 1, Subtitle A of DD Act)
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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
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
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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)
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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)
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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
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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
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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.
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University Administration
Families & Individuals
with disabilities
Colleagues &
Employees
Trainees & Students
Community Organizations
State Agencies
Legislature
Federal Agencies
Public
Spheres of Effort or Activity
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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