Rowan’s Down Syndrome Awareness Centre Founder, Mildred Katusabe, began by making contact (through community networks and medical professionals), and conducted interviews with 20 people with Down Syndrome in the Hoima District.
She observed that:
1. Observation: In many cases, medical professionals did not diagnose Down Syndrome at birth or subsequently
Action so far: OUTREACH: Information on Down Syndrome has been given to 8 health centers’ staff and village health teams in Hoima District.
2. Observation: Some parents did not know about the causes and effects of Down Syndrome. There is a need to provide information for parents of people with Down Syndrome, especially at ante-natal and neo-natal stage. Some men left their wives after finding out their children have Down Syndrome blaming it on the women
Action so far: MEMBERS SELF-SUPPORT: 45 people with Down Syndrome plus their family members, care-givers (total 90 members) enlisted. Mutual appreciation of challenges and solutions, self-advocacy has become a very powerful outcome.
3. Observation: People with Down Syndrome are being called “zonto” or :wire” meaning “mad” and therefore suffer from abuse.
Action so far: AWARENESS: Media, social media campaigns and radio talk shows have started to sensitize the general public about Down Syndrome.
4. Observation: There is a lack of therapies and support services for people with Down Syndrome in Bunyoro.
Action so far: THERAPY AND MEDICAL SERVICES Have begun to be for people with Down Syndrome in Bunyoro RDSAC is developing a “play scheme” approach to diagnosis and treatment. A physio—therapist has been enrolled, and relationships have been developed with specialized medical service providers to provide services and therapies.
We have developed and are following RDSAC 2021-2025 strategic plan, setting up office, registration, admin and financial and operating procedures.
- Introducing Speech therapy services.
- Working with other Districts in Bunyoro.
- Extending membership towards 150 through more Health Centers and VHTs
- Building existing and forming new self-support groups in each area
- Setting up a UK charity foundation for long term financial sustainability
- Beginning to work with schools for inclusive education.