Addressing Barriers to Full Participation for Racially and Ethnically Diverse Populations: Strategies and Lessons Learned JOANNA CORDRY PLANNING COORDINATOR TEXAS COUNCIL FOR DEVELOPMENTAL DISABILITIES (TCDD)

Why Address Barriers? DD Act TCDD’s mission statement: “…all people with disabilities…” Demographics Disparities and disproportionality exist

2013 Demographics (Percentage)

More than 50% of U.S. children under age 5 are Minorities

Disparities and Disproportionality: Examples African American infants with Down syndrome have a lower survival rate beyond their first year than their white peers African American and Latino boys with disabilities experience more severe school discipline than other racial and ethnic groups

When one fish is not doing well, you look at the fish. When most of the fish are not doing well, you look at the water. About Disparities and Disproportionality

TCDD’s Previous Efforts Outreach to large organizations Training Expectations of grantees Data & literature review One-time events

2011: “Outreach and Development” Grants 1 year, $10,000, non-competitive Shortened, simplified application for grassroots groups Goals chosen by groups that apply African American, Latino, Asian, or Native American groups Within group work 15 grants funded thus far

“Outreach and Development” Grants: Purpose Support people of racial/ethnic minority backgrounds to: Improve service systems Increase access to services and supports Inform TCDD’s future activities Address needs they have identified Groups must be willing to present to Council

Reaching East African Children and Families (REACh) Example Grant:

REACh Presentation: Accomplishments Provided direct support to families Supported families who regularly attended monthly meetings Supported 40 families via phone/ and personal contact Raised awareness at community events Held social events for families Translated documents into multiple languages Gained non-profit status

REACh Presentation: Challenges Stigma: Some families were hesitant to join to keep their child’s disability private Addressed: Educated community Held individual meetings, phone calls Discussed openly at community events

REACh Presentation: Challenges Religious, Cultural, Political Differences among Ethiopians and Eritreans; Somalis not as willing to join activities. Addressed: Provided binders to Somali families Reached Somali families through a Somali leader in the organization Educated families individually, and supported them in all areas (school, medical, agency, etc.)

REACh Presentation: Overcoming challenges in the Somali community Create a separate entity for Somali families Communicate in their native language Have more information translated into Somali Create an appropriate cultural and religious setting for them

Outreach Grants: Representation

Some Grantees Shared: In their culture… People are less likely to ask for help until there is a crisis Independence, assertiveness and self-advocacy are not goals People with disabilities experience tremendous stigma People don’t view disability negatively; people aren’t separated “Help seeking” behavior might look different in different cultures

Some Grantees Shared: In their culture… People often desire to be around people of the same culture “Be mindful that assimilation is not a minority culture goal” Lack of trust of people from other cultures is a huge barrier Values and goals may not be consistent with DD Councils’ values

Example Grant:

Presentation: Apalachicola Band of Creek Indians

Outreach and Development Grants What types of things has TCDD learned?

Unexpected Lessons Rural areas may be less open and harder to change Groups applied from geographic areas not typically reached Tremendous amounts of v olunteer work was unsustainable Even simplified fiscal management was tremendously difficult New active advocates did not necessarily emerge More providers than expected don’t meet linguistic needs

2013: Gulf Coast of TX African American Family Support Conference Based on Central TX African American Family Support Conference Partnered with founder of CTAAFSC Highly involved TCDD staff with ties to community Largely focused on health and mental health issues Incorporated faith and reached African American clergy Learned lesson: requires community support and involvement

2014: Center for Elimination of Disproportionality and Disparities Office in Health and Human Services Commission Created by legislature in response to data from a state agency Staff in different regions work with community members Services: Training and technical assistance Resource center

2015: Culturally Appropriate Family Supports RFP Previous grantees Capacity building and supports Identification of advocates Self-advocacy information shared Six submissions (seven interested)

The Future Hold “Undoing Racism” Training Outreach and Development Grants PLUS Work with CEDD Try to promote open conversations Start and respect where people are, and share our vision Look at changes needed in TCDD culture, policies, procedures Promotores de Salud

Lessons Not just “cultural competence” - build relationships Listen; share; don’t require agreement Don’t expect trust Actively look at systems, including your own Be willing to have difficult conversations (and to be wrong) One step at a time – but START

Joanna Cordry Planning Coordinator Texas Council for Developmental Disabilities