Health Equity
About this project.
We are working with Humanity & Inclusion to learn about health equity for people with Down syndrome and intellectual disabilities.
This is a joint project by the Down Syndrome International network.
Why we are doing this project.
People with disabilities around the world have worse health outcomes than other people. This is not fair.
We want better health outcomes for everyone.
This project contributes to our work on the issue of inclusive health.
What we already know.
The World Health Organization wrote a global report on health equity for people with disabilities.
The report explains what causes bad health outcomes and what can be done to improve health outcomes.
What we are doing.
- Raising awareness around the world on the right to health equity.
- Gathering evidence about the health equity of people with Down syndrome around the world.
- Advocating for changes in policy and legislation to promote health equity.
Our global consultation.
To address the data gaps, we wanted to hear from people with intellectual disabilities.
We launched a survey, which was shared across our global network to give individuals and families a chance to have their voice heard and their experience shared.
Our network of organisations held focus groups to talk to people with Down syndrome and intellectual disabilities about their experiences.
- We collected more than 750 responses
- We heard from people in 95 countries around the world
- We heard from 139 people with intellectual disabilities
- We heard from 118 organisations, including 49 organisations of persons with disabilities
Initial results.
We have heard lots of negative experiences of healthcare, but also some positive ones.
All of the responses will help us to understand the causes of health inequity for people with Down syndrome and intellectual disabilities.
Affordability:
- “The National Health Insurance is woefully inadequate for the many healthcare challenges for persons with Down syndrome." - respondent in Ghana
- "A lot of vital services … parents have to self-pay for ... having to make difficult decisions on what to finance or not in terms of care.” - respondent in the United States
- More than 50% of respondents in low- or lower middle-income countries find healthcare unaffordable.
Availability:
- “I had a fever repeatedly, but no hospital would take me. We went to several hospitals, but no one would take us.” - respondent in China
- “We found as soon as she turned 18 there are no services available, it's disgraceful!” - respondent in Ireland
- “[My] baby [has … a] heart defect. […] Cardiac surgery is not available in the whole [country].” - respondent in Ethiopia
- “Services for speech therapy [are] almost non-existent.” - respondent in Rwanda
- “Finding a mental health specialist who also understood developmental disabilities was impossible.” - respondent in the United States
Accessibility of health information and services:
- “[We can’t access] information about cancer or sex education. Even the Easy Read is too hard.” - respondent in the United Kingdom
- 29% of people said that the way health professionals talk to them is only understandable ‘some of the time’ or ‘never’.
- Availability of accessible, good quality health information is poor, especially in lower income countries.
Quality of care:
- “People look at the referral and see Down syndrome and they shut their mind to anything else. It's like I am a syndrome, not a person.” - respondent in Canada
- “Health care providers continue to give us information on how the disability can be cured.” - respondent in Ghana
- “I went to the emergency room; I was injected with insulin without being informed or asked about whether I wanted it.” - respondent in Switzerland
- “They generally talk about her, not TO her. If they talk to her, the tone is condescending. They usually operate on an assumption of incompetence until she speaks to them.” - respondent in United States
- “They did not allow my personal assistant to stay with me in the emergency room, while I was feeling bad and frightened, and I cannot speak or make gestures, I cannot communicate without my personal assistant.” - respondent in Argentina
Health care for women and girls with intellectual disabilities:
- “There is forced sterilization and forced abortion targeting women and young females with intellectual disabilities.” - respondent in Zambia
- “The topic of ‘intellectual disabilities and the desire to have children/parenthood’ is still a taboo.” - respondent in Switzerland
- “It has been difficult to navigate services for my daughter regarding female reproductive care. It is non-existent and/or a challenge.” - respondent in the United States
- “Healthcare providers and educators are often not adequately trained to address the unique SRH needs of individuals with intellectual disabilities.” - respondent in Mauritius
Next steps.
We are currently analysing the data from our consultation and plan to publish later this year.
We will use the data to create resources and work together as a network to advocate for improved health equity.
What our Ambassadors think about health equity.
Our Ambassadors have recorded video messages to explain what health equity means to them.
You can watch these videos on YouTube here:
The 13th World Down Syndrome Day Conference.
This project was launched at the 13th World Down Syndrome Day Conference at the United Nations in New York.
Self-advocates from around the world spoke up about their experience of health equity.
Supporters, government and UN officials and NGO representatives also shared knowledge, experience, and good practice.
Watch this recording of the launch event:
Thank you!
We would like to thank our Network members for their support in running and promoting this campaign.
Special thanks to the National Down Syndrome Society and the Down’s Syndrome Association for their support.
Thanks also to Humanity and Inclusion and the World Health Organisation.
The approaches we use in this project:
Developing and sharing evidence – we are gathering evidence via a global survey and focus groups in different countries around the world.
Empowering people to speak up – people with Down syndrome, family members and professionals have taken part in the consultation.
Supporting organisations – we are supporting member organisations to understand health equity and to run focus groups.
Building and leading partnerships – we are working closely with Humanity and Inclusion on this project.
Coordinating advocacy – our member organisations will use the report to advocate for health equity in their countries.