Families Shape the Future

Recently our Ugandan partner NAPADEC presented at the International Congress on Family-Centred Early Intervention in Austria. The title was ‘Family Inclusiveness and Economic Empowerment: The Future for Deaf Children in Uganda’ and was led by Josephine Namirimbe, who is the mother of a deaf child.

Josephine shared with the audience an evaluation of the Improving Communication for Inclusive Families project NAPADEC has been running.
Josephine shared that:

''In Uganda, most of the work to support deaf children lies with the family. Services, including diagnostic audiology, early intervention and schools are not easily accessible due to both distance and cost. Deaf children in Uganda are usually identified late. Less than 2 per cent of deaf people in Uganda have hearing aids. Hearing aids or cochlear implants are financially impossible for most families.

''Non-governmental organisations which support deaf children and their families only work in a few districts. This means that most children and their families do not get the early support they need.’’

NAPADEC has been running a project which enabled parents in six districts to form Parent Support Groups (PSGs). These are where parents learn about deafness and language, conduct home visits for parent-to-parent mentoring; share experiences; provide wellbeing support and conduct community awareness activities. Most importantly, PSGs receive significant training in Ugandan Sign Language so children and families have a language to communicate in.

Poverty is an enormous problem for these families, and too often deaf children’s education is not prioritised. This why PSGs also have a savings and loans scheme and offer income generating training such as learning how to make items such as soap or in skills such as tailoring and hairdressing.

Evaluating progress

NAPADEC, with support from DCW, commissioned an evaluation of its programme from an independent consultant who was a Ugandan Sign Language expert. The analysis was done through three focus groups with parents and children, observation of interactions between children and parents and interviews with professionals such as district and project officials.

Happily, the evaluation found a significant increase in family communication. At baseline, 46.3% parents could not communicate at all with their deaf child at all. Following the training 70% of parents reported improved communication with their child , with the majority of mothers and deaf children saying they could now communicate much better. However, the evaluation found ongoing training for fathers is needed.

''The communication gap that NAPADEC bridged in my family brought back stability, love, life and happiness at home.'' – Deaf young woman

“I can now communicate well with my son which was different before. I used to use local signs yet he used professional sign language and we couldn’t understand each other well. Now I also know some basic professional sign language… his brothers and sisters can also sign. This has brought him closer to the family…” - Parent of a deaf child.

Knowledge sharing and awareness raising has worked in changing perceptions about deaf people. Parents are understanding the capabilities of their offspring, and local government officials are more engaged and can see deaf people need to be included in the community.

“Before I joined this group, I did not know about the best schools for deaf children. The one where my child was enrolled did not provide the best education and he always failed in class. I was introduced to Kyomya Primary School by a fellow parent I found in this group. My son is now in that school,” – parent of deaf child.

However, the evaluation found that the capacity of the PSGs to access grants from local government remains constrained due to their limited capacity to write proposals and mobilise resources.

It also found that there are ongoing issues of inadequate knowledge among policy makers to develop clear policies, strategies and guidelines to inform actions in the various sectors for inclusion of deaf people and their parents.

Josephine finished her speech with the following conclusion:

Challenges for people who are deaf in Uganda are considerable. Poverty hinders access to communication, education, and other essential services. NAPADEC’s program of parent support groups and community awareness activities is changing attitudes , improving communication access, and empowering deaf people and their families. The ripple effect over time can improve the quality of life for deaf people and facilitate their ability to live a decent life.

Thank you Josephine for giving the work NAPADEC is doing with deaf children and their families a high profile at this conference.