DEVELOPMENTS SO FAR
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.
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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.
Developing RDSAC
We have developed and are following RDSAC 2021-2028 strategic plan. Under this plan, we were able to rent and set up new premises, kept up-to-date with NGO Bureau, URSB, URA returns filling, administration, financial and operating procedures excellently.
We have developed a model of working with Health Personals as Focal persons and Members Support Persons in each District centered on care-giver groups
2025 Priorities
- Expanding from 3 to 5 districts to accomplish our goal of working through out Bunyoro region.
- Extending membership towards 200 through Health Centres and VHTs.
- We are strengthening our model to directly reach and support our members through the Support Groups
- Starting up more Speech Therapy sessions in all the districts that we are operating in
- Continue to work with schools for inclusive education
- Setting up a US charity foundation for long term financial sustainability
- Establishing the long-term mission of becoming a model and Centre of Excellence for People with Down Syndrome in the East African Community.
- We are looking forward to search for funding and grants for the Support groups in Hoima and Kikuube given that Masindi and Kigorobya groups have now got start up.