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Family, Whanau and DisabilityAuthor: Family, Whanau and Disability
Tune in to Parent to Parent's podcast Family, Whanau and Disability. This podcast features interviews with parents, professionals and specialists on disability-related topics, and is a source of information and resources for families and whnau caring for people with disabilities in New Zealand. Discussion topics cover a range of subjects related to disability and special needs, such as inclusive education, supporting someone with special needs, and the challenges and triumphs of living with a disability. Language: en-nz Genres: Kids & Family, Parenting, Relationships, Society & Culture Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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40. The Importance of Beginning Early
Sunday, 17 October, 2021
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.LinksAngelman NetworkRodney Inclusive CommunitiesImagine Better - Developing a Vision for the futureJane Bawden former Parent to Parent CEO video on her journeyParent to Parent New Zealand IncEnabling Good Lives principlesAltogether AutismCare Matters or 0508 236 236 freephone service for carersMana Whaikaha – MidCentral only
