Connect, Inform, Support

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

Presenters: Jo Hannah Produced by Parent to Parent NZ Guests: Jo Ellis  Jo Ellis is a single mum to Harvey, an enthusiastic, inquisitive teenage boy that was born with Cri Du Chat Syndrome. Prior to Harvey being born, Jo had lived overseas but returned to her hometown in New Zealand to set up a new life for her and Harvey not long after he was born. Jo has navigated the world of disabilities with her son for 15 years, and over this time she has purposely built relationships with those around her to help build support not only for Harvey but also herself. She is a strong believer in the importance of connection and building solid foundations to thrive. She knows it is not always easy to make connections and that it is something you need to work at. She understands first-hand what a difference it can be to surrounding yourself with people that are truly there for you and your child. Programme Synopsis  Jo talks to her guest Jo about relationship building and why it is important to build and maintain strong relationships and connections with the wider community, whanau and any providers that come into your life to offer support for your family Links Cri du Chat Support Group NZ Altogether Autism article on Circle of  Support Talking about Surrounding Yourself with support - Care Matters Parent to Parent's Support Parent Service Parent to Parent's information on Support groups 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

Presenters: Jo Hannah Produced by Parent to Parent NZ Guests: Frian Wadia Frian Wadia is a mother of  3 lovely boys 16yrs, 14yrs and 12yrs old, all with varying disabilities and learning needs.   Through her experiences within the education and health systems, she has become a passionate advocate for creating systemic change to ensure inclusion and enabling a meaningful dignified life for all individuals with disabilities. She is particularly interested in the creation of a truly inclusive education system. Her  constant endeavours are aimed at empowering families and disabled people; improving systems, policies and legislation to ensure disabled children’s rights are upheld; and equity is ensured for all children irrespective of their abilities, socioeconomic status, neurodiversity and any other challenges.  Programme Synopsis Jo talks to Frian about what mainstream first has meant to her family and ways that other families can work with their child's school to ensure that they have an inclusive educational environment  for their child. Links Ministry of Education: the team that will support your child - https://parents.education.govt.nz/learning-support/learning-support-needs/the-team-that-will-support-your-child/ Parent to Parent New Zealand Inc  VIPS Equity in Education  Enabling Good Lives principles Altogether Autism Care Matters or 0508 236 236 freephone service for carers Mana Whaikaha – MidCentral only

Research: Lisa Pirihi Presenters: Louise Ratcliffe Produced by: Parent to Parent Support and Information Team Guests Mark Smith Managing Director of CareerMoves Programme Synopsis Louise and Mark discuss how CareerMoves support people with disabilities and employers to work together to enable independent employment opportunities. Tune in to Parent to Parent's podcast Connect, Inform, Support Connect, Inform, Support features interviews with professionals and specialists on disability-related topics, and is a source of information and resources for families and whānau caring for people with disabilities. 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 disability. Links Career Moves NZ Parent to Parent New Zealand Inc Altogether Autism Care Matters or 0508 236 236 freephone service for carers Mana Whaikaha – MidCentral only

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe and David Taylor Produced by Wintec Music and Performing Arts Guests Peter van Vroonhoven Peter’s connection to disability and para-sports is through his son who plays Powerchair Football. He coordinates the sport in the Waikato and is Vice President of New Zealand Powerchair Football’s national body - https://parafedwaikato.co.nz/about-us/board/ Programme Synopsis Louise and David talk to Peter about how he and his son Will got involved with powerchair football and how much of a positive impact it has had on their whole family’s life. Tune in to Parent to Parent's podcast Connect, Inform, Support Connect, Inform, Support features interviews with professionals and specialists on disability-related topics, and is a source of information and resources for families and whānau caring for people with disabilities. 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 disability. Links Parafed Waikato NZ Powerchair Football Waikato Wasps Facebook Intro to Powerchair football from a UK player Dr Michael Jeffress research paper on “Opportunities and Benefits for Powerchair users through power soccer  Arron “Wheelz” Fotheringham Parent to Parent New Zealand Inc Altogether Autism Care Matters or 0508 236 236 freephone service for carers Mana Whaikaha – MidCentral only

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe and David Taylor Produced by Louise Ratcliffe with help from Wintec Music and Performing Arts Guests Steve Brown – ex chef, therapist with expertise in disability and autism Phil Brown – mental health nurse Programme Synopsis David and Louise talk to Steve and Phil about the work they do for families of children with autism, at the animal sanctuary in the Waikato Tune in to Parent to Parent's podcast Connect, Inform, Support Connect, Inform, Support features interviews with professionals and specialists on disability-related topics, and is a source of information and resources for families and whānau caring for people with disabilities. 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 disability. Links Takiwatanga Sanctuary Trust Animal Welfare Organisations & Charities Otorohanga Waikato 3975 Parent to Parent New Zealand Inc Altogether Autism Care Matters or 0508 236 236 freephone service for carers Mana Whaikaha – MidCentral only

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Louise Ratcliffe with help from Wintec Music and Performing Arts Programme Synopsis Louise ask the Minister about what is in this new “Wellness Budget” that is going to benefit disabled people and the people who support them. Tune in to Parent to Parent's podcast Connect, Inform, Support Connect, Inform, Support features interviews with professionals and specialists on disability-related topics, and is a source of information and resources for families and whānau caring for people with disabilities. 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 disability. Links Parent to Parent New Zealand Inc Altogether Autism Care Matters or 0508 236 236 freephone service for carers Mana Whaikaha – MidCentral only

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