40. The Importance of Beginning Early

Family, Whanau and Disability

Ursula Christel has 3 sons. In 1998 her middle son was diagnosed with Angelman Syndrome, a rare condition that affects 1:15,000 people. As life got busy, so did Ursula. She co-founded The Angelman Network, a NZ based registered charity that shares up-to-date information about Angelman Syndrome and offers support to families in New Zealand. She attended as many disability related workshops as she could to help support her family and to continue to grow her work with The Angelman Network.
Just before her son turned 18, an opportunity presented itself for her to create a PATH plan for him, in preparation for transitioning from school. This process created a vision that she could focus on and base any major decisions on. It helped her decide where she should relocate to, in order to realise the vision. Now in 2021 her son has moved into a house with friends and is living independently from Ursula, with support, to ensure he continues a good life.
Programme Synopsis
Jo talks to her guest Ursula about the Enabling Good Lives principle of beginning early. They talk about the process that Ursula undertook to create a vision for her son's future that would ultimately create a 7-year plan for her son that would result in him living independently in a house nearby, with friends. They discuss the fact that by planning early for her son's future meant that she was able to make decisions easily, as she had a clear goal that they were heading towards.
Links

• Angelman Network
• Rodney Inclusive Communities
• Imagine Better - Developing a Vision for the future
• Jane Bawden former Parent to Parent CEO video on her journey
  Parent to Parent New Zealand Inc
• Enabling Good Lives principles
• Altogether Autism
• Care Matters or 0508 236 236 freephone service for carers
• Mana Whaikaha – MidCentral only