National Network of University Centers for Excellence in Developmental Disabilities (UCEDD)

UCEDD Jennifer G. Johnson, Ed.D., Supervisor Jennifer G. Johnson, Ed.D., Supervisor – Team Members Team Members Suad Jama Regions 1 & Rita Stevens Regions 2 & Shawn Callaway Regions 7 & Brianne Burger Regions 5 & Sara Newell Regions 6 &

UCEDDs: Connecting Research to Practice Serve as the knowledge and resource broker between the University and community Serve as the knowledge and resource broker between the University and community –Brings know-how and expertise to real world problems –Practical application of strategies for achieving long- term goals for people with developmental disabilities –Offer real world experiences for trainees –Provides opportunity for community to impact on the preparation of professionals –Work is innovative (interdisciplinary training; model demonstrations)

Overview of the UCEDDs Authorized by Federal Law: Developmental Disabilities Assistance and Bill of Rights Act of 2000 Authorized by Federal Law: Developmental Disabilities Assistance and Bill of Rights Act of 2000 Funded to carry out four core Functions: Funded to carry out four core Functions: –Interdisciplinary training –Community services (training, technical assistance, –Research –Dissemination Collaborate with persons with developmental disabilities, families, and other to conduct research and training and to achieve positive outcomes Collaborate with persons with developmental disabilities, families, and other to conduct research and training and to achieve positive outcomes

History of UCEDDs Idea for UCEDDs originated from John F. Kennedy’s Panel on ‘Mental Retardation’, which called for entities to address: Idea for UCEDDs originated from John F. Kennedy’s Panel on ‘Mental Retardation’, which called for entities to address: –Critical shortage of personnel –Need for research & statistical data –Role of numerous governmental agencies –Shortage of facilities –Lack of coordination Programs known as UAFs (University Affiliated Facilities) Programs known as UAFs (University Affiliated Facilities)

Early Characteristics of UCEDDs University-based units that reached out to community University-based units that reached out to community Linked university resources with disability community Linked university resources with disability community Provided: Provided: –Interdisciplinary training –Service –Clinical research

First Generation: Known as University Affiliated Facilities Known as University Affiliated Facilities Received construction funds from MCH Received construction funds from MCH Primary emphasis on health & allied health for people with cognitive disabilities Primary emphasis on health & allied health for people with cognitive disabilities Emphasized clinical diagnosis & treatment Emphasized clinical diagnosis & treatment Interdisciplinary leadership training Interdisciplinary leadership training Medically focused training Medically focused training Concentration of expertise in single location Concentration of expertise in single location

Second Generation: Known as University Affiliated Facilities Known as University Affiliated Facilities Few received MCH training support Few received MCH training support Developed working relationships with State DD Councils & service agencies Developed working relationships with State DD Councils & service agencies Addressed full life span Addressed full life span Emphasized community-based services and developmental concepts Emphasized community-based services and developmental concepts Moved towards systems change Moved towards systems change Required to leverage ADD support Required to leverage ADD support

Third Generation: Known as University Affiliated Programs Known as University Affiliated Programs Emphasized technical assistance, outreach training & dissemination Emphasized technical assistance, outreach training & dissemination Community-based programs as standard Community-based programs as standard Consumer empowerment, participation and satisfaction Consumer empowerment, participation and satisfaction Emphasis on inclusion, ADA and community supports and services Emphasis on inclusion, ADA and community supports and services Completion of Network expansion (1995) Completion of Network expansion (1995) Establishment of program standards Establishment of program standards

Fourth Generation: present Known as University Centers for Excellence in Developmental Disabilities Education, Research and Services Known as University Centers for Excellence in Developmental Disabilities Education, Research and Services Emphasize national network and international resource Emphasize national network and international resource Attention to research Attention to research Continued promotion of community-based programs as standard, consumer empowerment, participation and satisfaction Continued promotion of community-based programs as standard, consumer empowerment, participation and satisfaction

Fourth Generation: present Increased core funding allowed for further expansion of Network in 2006 and 2007 Increased core funding allowed for further expansion of Network in 2006 and 2007 Heightened focus on evaluation and accountability (Annual Report, indicators of progress) Heightened focus on evaluation and accountability (Annual Report, indicators of progress) Increased attention to DD Network collaboration Increased attention to DD Network collaboration Need for diversification of funding sources Need for diversification of funding sources Leadership transition Leadership transition

UCEDDs – ADD Funding FY 2009 funding $38.9 million FY 2009 funding $38.9 million Core funding increased to $535,000 for each UCEDD Core funding increased to $535,000 for each UCEDD Continued funding of Two National Training Initiative Grants as consortium projects in: Continued funding of Two National Training Initiative Grants as consortium projects in: Post Secondary Education (MA - Institute for Community Inclusion) Post Secondary Education (MA - Institute for Community Inclusion) Self-determination (MO) Self-determination (MO)

UCEDDs – ADD Funding Continued funding for Two Minority Partnership Grants: Continued funding for Two Minority Partnership Grants: –Georgia State University –USC UCEDD Continued funding for Training and Technical Assistance Contract with AUCD (UCEDD Resource Center) Continued funding for Training and Technical Assistance Contract with AUCD (UCEDD Resource Center)

Impact on People with DD The Core Functions are the building blocks of the UCEDD

= 1 UCEDD Guam American Samoa C. N. Mariana Islands Hawaii Islands Washington, DC Puerto Rico National Network of UCEDDs 68 Centers in each State and Territory = 2 UCEDDs = 3 UCEDDs Virgin Islands

Sources of Funding ADD ADD –PNS MCHB MCHB –SPRANS –LEND OSERS OSERS –OSEP, NIDDR, RSA Tech Act Tech Act State Agencies State Agencies Local Agencies Local Agencies CDC CDC DOJ DOJ DOL DOL SSA SSA CMS CMS IES - NCSER IES - NCSER Foundations & Corporations Foundations & Corporations

UCEDD Contributions in National Disability Initiatives Early Intervention Early Intervention Preschool & Child Care Preschool & Child Care Inclusive Education Inclusive Education Self-Advocacy & Self Determination Self-Advocacy & Self Determination Assistive Technology Assistive Technology Family-Centered Care Family-Centered Care Community-based Services Community-based Services Child Abuse & Neglect Child Abuse & Neglect School to Work Transition School to Work Transition Supported Living and Employment Supported Living and Employment Interdisciplinary Training Interdisciplinary Training Justice System Justice System Aging Aging Autism Autism

Organizational Structure Tremendous diversity in the network of UCEDDs Tremendous diversity in the network of UCEDDs Centers have evolved overtime and are variously organized both within the University and within the Center Centers have evolved overtime and are variously organized both within the University and within the Center Organizational structure is contextualized in the history of the program and based on University environment, State needs, and grant portfolio Organizational structure is contextualized in the history of the program and based on University environment, State needs, and grant portfolio

UCEDD Organizational Structure Different management models: Different management models: –Area of Emphasis/Disability Specific (e.g., feeding clinic, autism services) –Core functions (e.g., training coordinators, community services coordinator, research coordinator, information dissemination coordinator) –Mixed model Leadership models Leadership models –Director with full leadership responsibility –Director and Associate Director with responsibility variously distributed –Co-directors sharing responsibility

Medical/Hospital Placement Advantages Access to allied health professions Access to allied health professions Health related expertise Health related expertise Access to multiple clinics & infrastructure Access to multiple clinics & infrastructure Title V relationship Title V relationshipChallenges Dependent on changes in Health Insurance Dependent on changes in Health Insurance Hospital Admin. may not be interested in range of issues/life span and/or community based work Hospital Admin. may not be interested in range of issues/life span and/or community based work Pressure to bill Pressure to bill

School or College of Education Advantages Range of expertise in education related fields Range of expertise in education related fields Potential relationship with OSERS, OERI, etc Potential relationship with OSERS, OERI, etc Access to academic departments Access to academic departmentsChallenges Lack of access to allied health professions Lack of access to allied health professions Lack of medical expertise Lack of medical expertise Variable interest in adult populations Variable interest in adult populations

Stand Alone Center Advantages Autonomy & flexibility in types of grants & funding sources Autonomy & flexibility in types of grants & funding sources Direct contact with University Administration Direct contact with University Administration Fewer academic responsibilities Fewer academic responsibilities Access to various academic departments Access to various academic departmentsChallenges Difficulty in personnel preparation activities Difficulty in personnel preparation activities May be isolated from university community May be isolated from university community

Multi-Campus or Multi- Center arrangement Advantages Ability to capitalize on respective strengths Ability to capitalize on respective strengths Broader range of funding sources Broader range of funding sources Greater infrastructure resources Greater infrastructure resources Greater statewide coverage Greater statewide coverageChallenges Coordination among & between entities Coordination among & between entities Potential competition for resources Potential competition for resources Designating leadership Designating leadership Multiple sets of administrations Multiple sets of administrations

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