Be included in cultural competency efforts with medical systems, schools, and Departments of Public Health:
How do these entities describe Down syndrome—if at all? Are people with disabilities being included in educational efforts?
- Search websites and send emails:
- Key terms:
- “Down syndrome”
- Disability”
- “Diversity”
- “health equity”
- “health disparities”
- “bias”
- “minority underserved populations”
- ACOG example
- CDPH example
What are the values of the organizations/entities?
- DEI?
- Health disparities
- Discrimination/bias
Who is the contact?
- Search website: Program Manager for Equity Transformation
- Google “name” + email
- Find out the names of the lieutenants and email them
- Ask other professionals/colleagues
- Contact your local school of public health
- Contact local medical school
- Try to contact a human first and reach out to express concern.
Write a letter of concern and recruit collaborators—multiple organizations gives it strength.
- Other general disability organizations
- UCEDD
- DD Council
- Protection and Advocacy
Use the language that matters to them.
- “Social determinants of health” – income, race, transportation, employment. Supports and services like Medicaid and early intervention are especially critical as social determinants of health for people with disabilities, particularly those with multiple identities: https://static1.squarespace.com/static/5abe7e9b5ffd206d61d648ef/t/5f80b97ec617441793f29090/1602271616411/CHRIL+Disparities+Report.pdf
- When parents do not receive information at diagnosis/the first point on the life course, they are at risk of not being able to address critical social determinants of health. More than 60% do not receive adequate information about supports and services: https://pubmed.ncbi.nlm.nih.gov/37633732/
- Families of medically vulnerable children lose trust in doctors when they are not given proper support or experience discrimination, especially Hispanic families: https://pubmed.ncbi.nlm.nih.gov/36493376/. Particularly problematic when undergoing complicated medical care.
Social media and media campaign
- Use the levers you have.
- You have more power than you think you do.
