Collaboration & Participation in Disability Research & Practice. George Jesien, PhD Perth, Australia March, 2014

Transcription

1 Collaboration & Participation in Disability Research & Practice George Jesien, PhD Perth, Australia March, 2014

2 It All Started with the President s Committee on Mental Retardation 2

3 Original Concept- from John F.Kennedy s Panel on Mental Retardation To Address: Critical shortage of personnel Need for research & statistical data Shortage of diagnostic & treatment facilities Lack of coordination 3

4 Conceptual Overview Serve as a Bridge between University and Community Bring the best of what science has to offer to real world problems Interplay between academic & practical Real world experience for trainees Opportunity for community to participate in formation of professionals 4

5 Three National Networks of Centers 67 University Centers for Excellence in Developmental Disabilities (UCEDDs) 43Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Programs 15 Intellectual and Developmental Disabilities Research Centers (IDDRCs) 5

6 UCEDDs work to accomplish a shared vision in which all individuals with disabilities participate fully in the social, educational and economic lives of their communities 6

7 UCEDD Role Serve as resources for local, state, national and international agencies, organizations, and policy-makers concerned about people living with developmental and other disabilities and their families. 7

8 Core Functions Research: basic, applied & evaluation Interdisciplinary pre-service & outreach training Community services that provide T&TA, or model services & supports Dissemination of information Policy Develop. & Systems Change 8

9 UCEDD 8 Areas of Emphasis (Title I, Subtitle A of the DD Act) Quality assurance (advocacy, capacity building, & systemic change) Health Education Early intervention Child care Employment Housing Transportation Recreation Other services related to quality of life, such as community supports 9

10 Leadership Education in Neurodevelopment and Related Disabilities (LEND) Programs Funded by the Maternal & Child Health Bureau to: Ensure health care professionals have the necessary leadership & disability related skills and knowledge Address the unique needs of children & adolescents with special health care needs & their families Provide students interdisciplinary training in clinical and community settings Promote cultural competency, family-based care and interdisciplinary partnerships. 10

11 UCEDD/LEND Training and Services Provided in FY2012 3,560 students and fellows trained in programs 586,886 people trained in community 654,361 people received technical assistance 105,388 individuals received clinical services 146,438 individuals received consults and/or demonstration services 11

12 Placements of UCEDDs & LENDs within Universities University Medical or Health Center University Graduate School or Research Center School of Medicine College of Education Department of Pediatrics Other Departments Independent Service Agency affiliated with University 12

13 Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers (IDDRCs) 15 NICHD funded Center grantees: serve as national resource & centers of research excellence Principal mission: scientific discovery Discover causes, prevention strategies, treatments & interventions for birth defects & DD Represent nation s biomedical & behavioral research effort for in DD 13

14 Have evolved since the 1960 s from: Emphasizing clinical diagnosis & treatment Focusing only on children Medically focused training Disabilities related primarily to intellectual disability Facility based 14

15 To currently: Addressing more of a life span & crossdisability approaches Move toward systems change & impacting policy Emphasis on community-based serves & supports Developed working relationships & partnerships with State agencies & disability organizations Required to seek support from available opportunities- leveraging Federal support 15

16 Core principles and concepts Consumer empowerment, participation & satisfaction Interdisciplinary approach with emphasis on leadership development Emphasis on inclusion, ADA and supports & services Evidence-based Importance placed on outcomes & impact and knowledge translation into practice 16

17 Major Areas of Contribution in National Disability Initiatives Early Intervention Preschool & Child Care Special Education Access to General Curriculum School-Work Transition Family-Centered Care Inclusive Education Assistive Technology Post Secondary Education Screening & Identification Maternal & Child Health Child Abuse & Neglect Self-Advocacy Community-based Services Housing Health Care & Health Promotion Supported Living & Employment Aging 17

18 Collaboration Has Evolved Out of initial and ongoing competition Necessitated by need for advocacy for legislation and appropriations Influenced by need for large scale studies and access to populations Promoted by need for varying skills and expertise Resulted in sub-networks and clusters 18

19 UCEDDs Collaboration Models Single Center network as dissemination targets Prime Subcontract Consortium of Centers Multi-site studies Role differentiation data center, dissemination, population differences Coordinating Center provides TA & training Open Competition followed by network 19

20 Local & State Partnerships Departments of Education & Special Education Departments of Social Services, Labor, Housing, etc Departments of Public Health Office of Children with Special Health Care Needs Health Care and Service and Support Providers Parent Groups Wide Range of Disability & Consumer Organizations Local Universities and Colleges 20

21 What centers have to offer: Expertise & evidence based knowledge & resources Interdisciplinary trainees eager to learn & help Evaluation skills and instruments Grant writing skills & experience Willingness to partner & collaborate 21

22 What community organizations have to offer: Community placements & operations Access to individuals with disabilities & their families Real world experience in providing services and supports Policy impact on individuals & systems of care Opportunities to leverage resources 22

23 What can be done together: Develop innovative services & supports Carryout pilot or proof of concept projects Conduct research efforts Jointly seek resources Join in advocacy efforts at local, state or national levels Develop materials, resources, publications 23

24 Roles of Self Advocates & Family Members in UCEDDs & LENDs UCEDDs Community Advocacy Committees Project consultants and advisors Employees Co-investigators Community Liaison Students LENDs Co-Faculty Trainees Family Mentors 24

25 Each UCEDD has a Consumer Advisory Committee (in statute) to: Advise the director Provide guidance and feedback in the development of the 5-year plan Each year, provide guidance and feedback on how the UCEDD is doing with their 5-year plan 25

26 What is the Basic Role of a CAC? Advise and guide the work of the UCEDD Provide input & advice on needs & wishes of people and families with disabilities Serve as an informal bridge between the community and the university in their state 26

27 AUCD s Council on Community Advocacy (COCA) Each UCEDD has a Community Advisory Committee CAC (by statute) comprised of at least 50% individuals with disabilities & family members who reflect racial representation of state. Ensures the voices of individuals with disabilities are heard in the work of AUCD The co-chairs of COCA serve on AUCD s board Members communicate by conference call and listserv 27

28 COCA helps AUCD to Develop leaders and mentors that build the capacity of the network to affect change at the local, state, and national levels Assist in the development of standards for participation of people with disabilities and family members in UCEDD education, research, and service programs and in AUCD functions Serve as a model and resource for others desiring to infuse the participation people with disabilities and family members into program planning, research, and evaluation 28

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32 Thank You? s geojesien@gmail.com 32