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Distance Learning

Disparities in Intellectual and Developmental Disabilities Services and Supports

Why should we focus on disparities in intellectual and developmental disabilities services and supports?


PROJECT OVERVIEW 

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 specifically cites that certain segments of the population of people with intellectual and developmental disabilities are “unserved and underserved,” which “includes . . . individuals from racial and ethnic minority backgrounds, disadvantaged individuals, individuals with limited English proficiency, individuals from underserved geographic areas (rural or urban), and specific groups within this population including individuals who require assistive technology in order to participate in and contribute to community life.”  There is emerging evidence that individuals with intellectual and developmental disabilities from these unserved and underserved populations experience even greater disparities in access to, quality of, and outcomes of the services and supports they receive across the life span.

The purpose of the Disparities Resource Guide Series is to assist Development Disabilities Councils (DD Councils), University Centers for Excellence in Developmental Disabilities (UCEDDs), and Protection and Advocacy Programs (P&As) to:  

  • Address disparities experienced by identified populations of individuals with intellectual and developmental disabilities and their families; and
  • Implement changes in policy and practice to mitigate and reduce such disparities. 

This resource was developed by the Georgetown University National Center for Cultural Competence (NCCC) in partnership with key stakeholders in the network of programs funded by the Administration on Intellectual and Developmental Disabilities (AIDD), Administration for Community Living (ACL), U.S. Department of Health and Human Services, through a professional agreement with Sidem LLC.

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ABOUT THE RESOURCE GUIDES AND VIDEO NARRATIVES

The Disparities Resource Guide series is designed to:

  • Provide rationales to address disparities in IDD services and supports experienced by individuals with intellectual and developmental disabilities including, but not limited to, data on the occurrence of such disparities across racial, ethnic, cultural, and linguistic groups;
  • Offer key definitions and conceptual frameworks for addressing disparities in IDD services and supports, including the role of cultural and linguistic competence; and
  • Provide a checklist as a structure to spur dialogue and self-examination, engage stakeholders, and plan individually and collaboratively across AIDD-funded programs to address disparities in IDD services and supports within the state or territory.

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Guides

There are four guides one each for DD Councils, UCEDDs, and P&A programs and one focused on collaboration across the three AIDD-funded programs.      

  • A Resource Guide to Respond to Disparities in Developmental Disabilities Services and Supports for Developmental Disabilities Councils (Coming Soon)
  • A Resource Guide to Respond to Disparities in Developmental Disabilities Services and Supports for University Centers for Excellence in Developmental Disabilities (Coming Soon)

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Video narratives

The video narratives give the perspectives of individuals with intellectual and developmental disabilities and their families about the scope and impact of disparities in services and supports and recommendations for addressing these disparities. The video narratives also feature insights from DD Councils, UCEDDs, P&As, and national associations concerned with intellectual, developmental, and other disabilities.  Consistent with the NCCC’s disability disparities framework, the video narratives are assigned to the following categories.

  • Disparities in Availability
  • Disparities in Accessibility
  • Disparities in Acceptability
  • Disparities in Quality
  • Disparities in Utilization

Additional categories include: 

  • Perspectives from those engaged in state level efforts to address disparities in services and supports;
  • Across AIDD-Funded Programs: What our National Organizations are doing to address disparities in services and supports; and
  • Advice to AIDD-funded and other Programs: Learn from and act on the wisdom of the people we serve and support.

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Perspectives from the IDD Network

Let’s meet the individuals, family members, and professionals featured before we hear their stories. Their narratives reflect their experiences and perspectives at the time of their video submissions received between August 2018 – May 2019.

Andy Arias
Andy Arias
Disability Advocate & Georgetown University Leadership Academy Faculty
Elver Ariza-Silva
Elver Ariza-Silva
Quality Trust for Individuals with Disabilities, District of Columbia
Diana Autin
Diana Autin
Statewide Parent Advocacy Network (SPAN), New Jersey
Joan Beasley
Joan Beasley
Center for START Services at the University of New Hampshire Institute on Disability
Ian Bott
Ian Bott
Idaho Council for Developmental Disabilities
Dina Brewer
Dina Brewer
DisAbility Rights Idaho
Griselda Camacho
Griselda Camacho
Idaho Council for Developmental Disabilities
Angela Castillo-Epps
Angela Castillo-Epps
National Association of Councils on Developmental Disabilities
Daniel Crimmins
Daniel Crimmins
Center for Leadership in Disability, Georgia State University
Curt Decker
Curt Decker
National Disability Rights Network
Anab Gulaid
Anab Gulaid
formerly, Institute on Community Integration, University of Minnesota
Maribel Hernandez
Maribel Hernandez
University of California Davis, University Center for Excellence in Developmental Disabilities
Andy Imparato
Andy Imparato
Association of University Centers on Disabilities
Angelina James
Angelina James
Hopi Disability Advocacy Group in Arizona
Janice Johnson Hunter
Janice Johnson Hunter
National Disability Rights Network
Maria Juarez
Maria Juarez
Idaho Council for Developmental Disabilities
Scott Lindbloom
Scott Lindbloom
Arizona Developmental Disabilities Planning Council
Elizabeth Morgan
Elizabeth Morgan
University of California Davis, University Center for Excellence in Developmental Disabilities
Christine Mirzaian
Christine Mirzaian
University of Southern California, University Center for Excellence in Developmental Disabilities
Chioma Oruh
Chioma Oruh
Mothering Hands, Inc., District of Columbia
Christine Ann Pisani
Christine Ann Pisani
JJ Rico
JJ Rico
Arizona Center for Disability Law
Nachama Wilker
Nachama Wilker
National Disability Rights Network

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Diana Autin provides excellent insights on the factors that contribute to disparities in IDD services and supports

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A Disability Disparities Framework

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Disparities in Availability

These video narratives offer perspectives of people who describe disparities in the availability of services and supports that they experience personally or in the communities in which they live and work. 

 

 

 

 

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Disparities in Accessibility

These video narratives offer perspectives of people who describe disparities in the accessibility of needed services and supports that they experience personally or in the communities in which they live and work.

 

 

 

 

 

 

 

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Disparities in Acceptability

This video narrative provides insight as to why some services and supports are not acceptable to some Latino families due to lack services that take culture and language into consideration.

 

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Disparities in Quality

These video narratives provide examples of disparities in how the quality of services and supports vary for specific families, populations, and communities, including the lack of cultural and linguistic competence within systems. 

 

 

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Disparities in Utilization

The lack of capacity to address culture and language in the design and delivery of IDD services and supports is a major barrier to many families and communities. These video narratives provide insight on both cultural and linguistic beliefs and practices and lack of cultural and linguistic competence in some systems of services and supports. 

 

 

 

 

 

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Perspectives from those engaged in state level efforts to address disparities in services and supports

There is a strong commitment in many states, territories, and tribal nations to address disparities in IDD services and supports.  These video narratives provide examples of the great work that is happening.

 

 

 

 

 

 

 

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Across AIDD-Funded Programs: What our national organizations are doing to address disparities in services and supports.

These video narratives feature what three national associations – Association of University Centers on Disabilities (AUCD), National Association of Councils on Developmental Disabilities (NACDD), and National Disability Rights Network (NDRN) ─ are doing to prioritize and address disparities in IDD services and supports.

 

 

 

 

 

 

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Advice to AIDD-funded and other Programs: Learn from and act on the wisdom of the people we serve and support

It is essential that we actively seek and listen to the perspectives of individuals who are directly affected by disparities in IDD services and supports. Their experiences, insights, and wisdom are needed to inform and implement new policies and practices to reduce such disparities.

 

 

 

 

 

 

 

 

 

 

 

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