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National Network of National Network of University Centers for University Centers for Excellence in Excellence in Developmental Disabilities Developmental Disabilities (UCEDD)(UCEDD)
UCEDDUCEDD Jennifer G. Johnson, Ed.D., SupervisorJennifer G. Johnson, Ed.D., Supervisor
– 202-690-5982202-690-5982– [email protected]
Team MembersTeam Members
Suad JamaSuad Jama Regions 1 & Regions 1 & 44
202-690-202-690-60596059
[email protected] [email protected]
Rita StevensRita Stevens Regions 2 & Regions 2 & 33
202-260-202-260-61686168
[email protected] [email protected]
Shawn Shawn CallawayCallaway
Regions 7 & Regions 7 & 88
202-690-202-690-57815781
[email protected]@acf.hhs.gov v
Brianne Brianne Burger Burger
Regions 5 & Regions 5 & 99
202-618-202-618-55255525
[email protected] [email protected]
Sara NewellSara Newell Regions 6 & Regions 6 & 1010
202-690-202-690-59635963
UCEDDs: UCEDDs: Connecting Research Connecting Research to Practice to Practice
Serve as the knowledge and resource broker Serve as the knowledge and resource broker between the University and community between the University and community– Brings know-how and expertise to real world Brings know-how and expertise to real world
problemsproblems– Practical application of strategies for achieving Practical application of strategies for achieving
long-term goals for people with developmental long-term goals for people with developmental disabilitiesdisabilities
– Offer real world experiences for traineesOffer real world experiences for trainees– Provides opportunity for community to impact on Provides opportunity for community to impact on
the preparation of professionals the preparation of professionals – Work is innovative (interdisciplinary training; Work is innovative (interdisciplinary training;
model demonstrations)model demonstrations)
Overview of the Overview of the UCEDDs UCEDDs Authorized by Federal Law: Developmental Authorized by Federal Law: Developmental
Disabilities Assistance and Bill of Rights Act Disabilities Assistance and Bill of Rights Act of 2000of 2000
Funded to carry out four core Functions: Funded to carry out four core Functions: – Interdisciplinary trainingInterdisciplinary training– Community services (training, technical Community services (training, technical
assistance, assistance, – ResearchResearch– DisseminationDissemination
Collaborate with persons with developmental Collaborate with persons with developmental disabilities, families, and other to conduct disabilities, families, and other to conduct research and training and to achieve positive research and training and to achieve positive outcomesoutcomes
History of UCEDDsHistory of UCEDDs Idea for UCEDDs originated Idea for UCEDDs originated
from John F. Kennedy’s Panel from John F. Kennedy’s Panel on ‘Mental Retardation’, on ‘Mental Retardation’, which called for entities to which called for entities to address:address:– Critical shortage of personnelCritical shortage of personnel– Need for research & statistical Need for research & statistical
datadata– Role of numerous governmental Role of numerous governmental
agenciesagencies– Shortage of facilitiesShortage of facilities– Lack of coordinationLack of coordination
Programs known as UAFs Programs known as UAFs (University Affiliated (University Affiliated Facilities)Facilities)
Early Characteristics of Early Characteristics of UCEDDsUCEDDs University-based units that University-based units that
reached out to communityreached out to community Linked university resources with Linked university resources with
disability communitydisability community Provided:Provided:
– Interdisciplinary trainingInterdisciplinary training– ServiceService– Clinical researchClinical research
First Generation:First Generation:1963-19741963-1974 Known as University Affiliated Facilities Known as University Affiliated Facilities Received construction funds from MCHReceived construction funds from MCH Primary emphasis on health & allied health Primary emphasis on health & allied health
for people with cognitive disabilities for people with cognitive disabilities Emphasized clinical diagnosis & treatmentEmphasized clinical diagnosis & treatment Interdisciplinary leadership trainingInterdisciplinary leadership training Medically focused trainingMedically focused training Concentration of expertise in single locationConcentration of expertise in single location
Second Generation:Second Generation:1975-19861975-1986 Known as University Affiliated Facilities Known as University Affiliated Facilities Few received MCH training supportFew received MCH training support Developed working relationships with Developed working relationships with
State DD Councils & service agenciesState DD Councils & service agencies Addressed full life spanAddressed full life span Emphasized community-based Emphasized community-based
services and developmental conceptsservices and developmental concepts Moved towards systems changeMoved towards systems change Required to leverage ADD supportRequired to leverage ADD support
Third Generation:Third Generation:1987-20001987-2000 Known as University Affiliated Programs Known as University Affiliated Programs Emphasized technical assistance, Emphasized technical assistance,
outreach training & disseminationoutreach training & dissemination Community-based programs as standardCommunity-based programs as standard Consumer empowerment, participation Consumer empowerment, participation
and satisfactionand satisfaction Emphasis on inclusion, ADA and Emphasis on inclusion, ADA and
community supports and servicescommunity supports and services Completion of Network expansion (1995)Completion of Network expansion (1995) Establishment of program standards Establishment of program standards
Fourth Generation:Fourth Generation:2000 - present2000 - present Known as University Centers for Excellence in Known as University Centers for Excellence in
Developmental Disabilities Education, Developmental Disabilities Education, Research and Services Research and Services
Emphasize national network and Emphasize national network and international resourceinternational resource
Attention to research Attention to research Continued promotion of community-based Continued promotion of community-based
programs as standard, consumer programs as standard, consumer empowerment, participation and satisfactionempowerment, participation and satisfaction
Fourth Generation:Fourth Generation:2000 - present2000 - present Increased core funding allowed for further Increased core funding allowed for further
expansion of Network in 2006 and 2007expansion of Network in 2006 and 2007 Heightened focus on evaluation and Heightened focus on evaluation and
accountability (Annual Report, indicators of accountability (Annual Report, indicators of progress)progress)
Increased attention to DD Network Increased attention to DD Network collaboration collaboration
Need for diversification of funding sources Need for diversification of funding sources Leadership transition Leadership transition
UCEDDs – ADD FundingUCEDDs – ADD Funding
FY 2009 funding $38.9 millionFY 2009 funding $38.9 million
Core funding increased to $535,000 for Core funding increased to $535,000 for each UCEDD each UCEDD
Continued funding of Two National Continued funding of Two National Training Initiative Grants as consortium Training Initiative Grants as consortium projects in:projects in:
Post Secondary Education (MA - Institute for Post Secondary Education (MA - Institute for Community Inclusion)Community Inclusion)
Self-determination (MO) Self-determination (MO)
UCEDDs – ADD FundingUCEDDs – ADD Funding
Continued funding for Two Continued funding for Two Minority Partnership Grants:Minority Partnership Grants:– Georgia State UniversityGeorgia State University– USC UCEDDUSC UCEDD
Continued funding for Training Continued funding for Training and Technical Assistance Contract and Technical Assistance Contract with AUCD (UCEDD Resource with AUCD (UCEDD Resource Center) Center)
Interdisciplinary Training
Research
Dissemination
Community Service
Impact on People with DD
The Core Functions are The Core Functions are the building blocks of the the building blocks of the UCEDDUCEDD
= 1 UCEDD
GuamAmerican SamoaC. 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 FundingSources of Funding
ADDADD– PNSPNS
MCHBMCHB– SPRANSSPRANS– LENDLEND
OSERSOSERS– OSEP, NIDDR, RSAOSEP, NIDDR, RSA
Tech ActTech Act State AgenciesState Agencies Local AgenciesLocal Agencies
CDCCDC DOJDOJ DOLDOL SSASSA CMSCMS IES - NCSERIES - NCSER Foundations & Foundations &
CorporationsCorporations
UCEDD Contributions UCEDD Contributions in National Disability in National Disability InitiativesInitiatives Early InterventionEarly Intervention Preschool & Child Preschool & Child
CareCare Inclusive EducationInclusive Education Self-Advocacy & Self Self-Advocacy & Self
DeterminationDetermination Assistive TechnologyAssistive Technology Family-Centered Family-Centered
CareCare Community-based Community-based
ServicesServices
Child Abuse & Child Abuse & NeglectNeglect
School to Work School to Work TransitionTransition
Supported Living Supported Living and Employmentand Employment
Interdisciplinary Interdisciplinary TrainingTraining
Justice SystemJustice System AgingAging AutismAutism
Organizational Organizational StructureStructure Tremendous diversity in the network of Tremendous diversity in the network of
UCEDDsUCEDDs
Centers have evolved overtime and are Centers have evolved overtime and are variously organized both within the variously organized both within the University and within the CenterUniversity and within the Center
Organizational structure is contextualized Organizational structure is contextualized in the history of the program and based on in the history of the program and based on University environment, State needs, and University environment, State needs, and grant portfolio grant portfolio
UCEDD Organizational UCEDD Organizational StructureStructure Different management models:Different management models:
– Area of Emphasis/Disability Specific (e.g., Area of Emphasis/Disability Specific (e.g., feeding clinic, autism services)feeding clinic, autism services)
– Core functions (e.g., training coordinators, Core functions (e.g., training coordinators, community services coordinator, research community services coordinator, research coordinator, information dissemination coordinator, information dissemination coordinator)coordinator)
– Mixed modelMixed model Leadership modelsLeadership models
– Director with full leadership responsibilityDirector with full leadership responsibility– Director and Associate Director with Director and Associate Director with
responsibility variously distributed responsibility variously distributed – Co-directors sharing responsibility Co-directors sharing responsibility
Medical/Hospital Medical/Hospital PlacementPlacement
AdvantagesAdvantages Access to allied health Access to allied health
professionsprofessions Health related Health related
expertiseexpertise Access to multiple Access to multiple
clinics & infrastructureclinics & infrastructure Title V relationshipTitle V relationship
ChallengesChallenges Dependent on Dependent on
changes in Health changes in Health InsuranceInsurance
Hospital Admin. may Hospital Admin. may not be interested in not be interested in range of issues/life range of issues/life span and/or span and/or community based community based workwork
Pressure to billPressure to bill
School or College of School or College of EducationEducationAdvantagesAdvantages Range of expertise Range of expertise
in education related in education related fieldsfields
Potential Potential relationship with relationship with OSERS, OERI, etcOSERS, OERI, etc
Access to academic Access to academic departmentsdepartments
ChallengesChallenges Lack of access to Lack of access to
allied health allied health professionsprofessions
Lack of medical Lack of medical expertiseexpertise
Variable interest in Variable interest in adult populationsadult populations
Stand Alone CenterStand Alone Center
AdvantagesAdvantages Autonomy & flexibility Autonomy & flexibility
in types of grants & in types of grants & funding sourcesfunding sources
Direct contact with Direct contact with University University AdministrationAdministration
Fewer academic Fewer academic responsibilitiesresponsibilities
Access to various Access to various academic departments academic departments
ChallengesChallenges Difficulty in Difficulty in
personnel personnel preparation preparation activitiesactivities
May be isolated May be isolated from university from university communitycommunity
Multi-Campus or Multi-Multi-Campus or Multi-Center arrangementCenter arrangementAdvantagesAdvantages Ability to capitalize Ability to capitalize
on respective on respective strengthsstrengths
Broader range of Broader range of funding sourcesfunding sources
Greater Greater infrastructure infrastructure resourcesresources
Greater statewide Greater statewide coveragecoverage
ChallengesChallenges Coordination among Coordination among
& between entities& between entities Potential Potential
competition for competition for resourcesresources
Designating Designating leadershipleadership
Multiple sets of Multiple sets of administrationsadministrations
Questions Questions
