The New Zealand Down Syndrome Association (NZDSA) supported 11 people with Down syndrome to undertake self-advocacy training, funded through Te Pou’s consumer leadership development grant. The training was hugely successful and the participants have now been appointed to the self-advocacy group STRIVE.
NZDSA is a national organisation which promotes the participation of people with Down syndrome in their communities. NSDSA was sponsored by IHC services to apply for the funding.
The training
The Self-Advocacy Leadership Development Training was undertaken between 2012 and 2013. The training was divided into four workshops over 15 days, covering areas such as:
- self-determination and leadership
- creating networks
- participating in meetings
- inclusion
- service quality.
Ten out of the 11 participants completed the training.
What did participants think about the training?
As part of the training programme, NZDSA evaluated the impact and benefits of the training for the participants. Before and after the training, participants were asked about their confidence, their ability to make decisions about their own life and speak up and ask questions, and their leadership abilities and skills. Figure 1 (at the end of the story) shows an example of the rating scale and some of the findings from key questions.
Benefits of the training
The feedback showed that as a result of the training, participants now tell others more often what they want or need, make more plans, set their own goals, feel more independent and make their own decisions about their lives.
Here are some examples of what the participants said:
“I tell people what I need”
“I now tell people about my dietary requirements”
“I make budgets now on how to spend my money”
“My goal is to have the right support to make my own plans for my own future”
“I told Dad that I want to change my job - I worked there for many years, before I would never do this”
“I catch the bus on my own”
The participants feel more confident and comfortable sharing their ideas with others and speaking in public. They also now participate more actively in their communities.
“I have more skills to do public speaking”
“I am confident because I’m a good role model especially when I go to my day-base”
“I actively participate in my community through work, day bases, sports clubs, church and schools”
“My confidence has gotten a lot better. I’m going to meetings and getting to practice, so my confidence is a lot better”
“Now I’m using a computer to email”
Most participants now see themselves as leaders and feel the training supported them in becoming a leader.
“[I am] making new members at the social club feel welcome”
“[I am] helping at the buddy walk”
“[I am] helping at the Youth Development workshop”
All participants are now more confident advocating for others and do so more often. They are now more aware of their rights and are comfortable asserting these.
"I stood up for my flatmate when others told her what to do and I explained that she could stand up to them”
“[I have the] right to have a say, speak and be heard”
“I always talk to other people, but before I did not tell my Dad things when I didn’t agree, now I tell him”
“I remind other people that we’re equals”
Training completed, what now?
The training participants reflected very positively on the training and believe they are now better informed, more independent and more in charge of their lives. They also indicated they would like to do more training, particularly in the areas of leadership, policy and making positive changes to their own lives and the lives of others.
NZDSA appointed the participants to the self-advocacy group STRIVE in June 2012. STRIVE allows the voices of people with Down syndrome to be heard. Since then, participants have been part of NZDSA’s magazine editorial group, provided feedback and advice to the governance committee, participated in meetings, presented at conferences and have become members of a range of local committees.
Figure 1: NZDSA rating scale for questions
