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 NetworkRodney Inclusive CommunitiesImagine Better - Developing a Vision for the futureJane Bawden former Parent to Parent CEO video on her journey Parent to Parent New Zealand IncEnabling Good Lives principlesAltogether AutismCare MattersMana Whaikaha

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 NZAltogether Autism article on Circle of SupportTalking about Surrounding Yourself with support - Care MattersParent to Parent's Support Parent ServiceParent to Parent's information on Support groupsParent to Parent New Zealand IncEnabling Good LivesAltogether AutismCare MattersMana Whaikaha

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 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 LivesAltogether AutismCare MattersMana Whaikaha

Research: Lisa Pirihi Presenters: Louise Ratcliffe Produced by: Parent to Parent Support and Information Team Guests Mark Smith Managing Director of CareerMoves Programme Synopsis 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 NZParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

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 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 WaikatoNZ Powerchair FootballWaikato Wasps FacebookIntro to Powerchair football from a UK playerDr Michael Jeffress research paper on “Opportunities and Benefits for Powerchair users through power soccer Arron “Wheelz” FotheringhamParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

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 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 TrustAnimal Welfare Organisations & CharitiesOtorohanga Waikato 3975Parent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Louise Ratcliffe with help from Wintec Music and Performing Arts Programme Synopsis 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 IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Louise Ratcliffe with help from Wintec Music and Performing Arts Programme Synopsis 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 Office for Disability Issues budget informationParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe and David Taylor Produced by Louise Ratcliffe with help from Wintec Music and Performing Arts Programme Synopsis 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 SafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe and David Taylor Produced by Louise Ratcliffe with help from Wintec Music and Performing Arts Programme Synopsis 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 SafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

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: Tiffany Wilkinson Tiffany lives in Tauranga and works for Enrich + as a community facilitator, helping people with disabilities integrate into the community. She has a Bachelor’s degree in Early Childhood and a Masters in Disability and Inclusion studies, with experience working in mainstream and special education schools in both NZ and London. Tiffany has a brother with ASD and an intellectual disability, and so has been passionate about equality and inclusion from a young age. Tiffany has been involved with Parent to Parent’s SibSupport programme since she was 18 and is a member of the SAMS board. She lives next door to her brother and helps care for him 2-3 times a week. In her spare time she works as an extra for TV and loves musical theatre, particularly singing Programme Synopsis 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 IncAltogether AutismCare MattersMana Whaikaha

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 IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Wintec Music and Performing Arts Guests: Barbara Nelson Director, Kauri Centre Barbara Nelson spent the last 5 years as a Liaison Teacher at Westbridge Residential School. She worked with families in their homes, helping parents to support their children getting back into school. Prior to Westbridge Barbara was Day School Principal at Salisbury Girls in Nelson for 10 years where she and the Deputy Principal developed a support programme for the girls transitioning back home, into local school and into their local community. She is about to start a new role as Director at The Kauri Centre in Hamilton; an alternative education center where students are prepared and supported back into mainstream schooling. Programme Synopsis Louise asks Barbara for advice on helping children with special needs get ready to return to school after the long summer holidays Links https://parents.education.govt.nz/learning-support/learning-support-needs/the-team-that-will-support-your-child/Parent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Louise Ratcliffe with Wintec Music and Performing Arts Programme Synopsis Music “Christmas in the Summertime” by The Funky Monkeys 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 IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi and Louise Ratcliffe Presenter: Louise Ratcliffe Produced by Louise Ratcliffe and Wintec Music and Performing Arts Guests: Matthew Peppercorn TASK Mental Wellness Matthew has worked as a nurse for 25 years in mental health and intellectual disability. He has a IDCCR Act care manager diploma and has completed three post graduate papers. He has been integral into the planning of and restyling of both new and existing services in the care sector. He has done this both in England and NZ. He has lived in NZ for 15 years. When he isn't nursing he enjoys mountain biking, live music and gardening. He is also a free style rapper. Programme Synopsis 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 TASK Mental WellnessDepression NZSparx online game for anxiety and depressionSafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Wintec Music and Performing Arts Department Guests Janine Morrah Janine is Parent to Parent’s Manawatu Regional Coordinator. She is a Palmy local with strong connections to the community through sports and teaching. Janine’s prior work history has included teaching both domestic and international Studends. She has also spent time working as a caregiver in New Zeland and the UK. Lorna Sullivan Lorna is the Director of Mana Whaikaha, the Manawanui prototype for the development of Enabling Good Lives. Wendy O’Mira Wendy is a Connector with Mana Whaikaha in the Mid Central region. Programme Synopsis 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 Mana WhaikahaSafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi Presenters: Louise Ratcliffe Produced by Wintec Music and Performing Arts Department Guests Rebecca Armstrong - Researcher Rebecca is a researcher for Altogether Autism and Parent to Parent. Rebecca researches complex requests and consults with the Professional Expert Group (PEG). She also writes for the Altogether Autism Journal and is involved in the PRISM Professional Development Series. Rebecca completed a masters degree in Applied Psychology at the University of Waikato in 2015. Rebecca has worked with children with autism, in the school and home environment, since 2013. Programme Synopsis Music By Jason Long - Senior Academic Staff Member Programme Coordinator – Music Internship Director 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 SafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi and Carolyn Jury Presenters: Louise Ratcliffe Produced by Louise Ratcliffe and FreeFM89.0 Guests: Ali Beasley Ali Beasley lives in Nelson with her husband Keith and their two teenage children, George and Emilia. Emilia was diagnosed with autism at the age of seven, which had a profound impact on the whole family. Ali has recently written a book, Emilia’s Colours, which shares the highs and lows of living with a child with a major disability in words that are frank, touching and ultimately hopeful. Ali is an English graduate, with a background in residential social work with deaf adults in the UK, and has also worked as a Grant writer for Whenua Iti (an outward bound charity) in the Nelson region. She is a lover of the natural world (walking, yoga and Qigong) and also reading and poetry. Ali is a fierce advocate for disability issues, and in writing Emilia’s Colours hopes to support other parents who may be struggling to cope with the unpredictable nature of life with an autistic child. She also aims to raise awareness and a better understanding of this ‘invisible’ disability. Programme Synopsis Music True Colours by Cyndi Lauper Rainbow Connection version by Gwen Stefanie 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 SafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi and Carolyn Jury Presenters: Louise Ratcliffe Produced by Louise Ratcliffe and FreeFM89.0 Guests: Ali Beasley Ali Beasley lives in Nelson with her husband Keith and their two teenage children, George and Emilia. Emilia was diagnosed with autism at the age of seven, which had a profound impact on the whole family. Ali has recently written a book, Emilia’s Colours, which shares the highs and lows of living with a child with a major disability in words that are frank, touching and ultimately hopeful. Ali is an English graduate, with a background in residential social work with deaf adults in the UK, and has also worked as a Grant writer for Whenua Iti (an outward bound charity) in the Nelson region. She is a lover of the natural world (walking, yoga and Qigong) and also reading and poetry. Ali is a fierce advocate for disability issues, and in writing Emilia’s Colours hopes to support other parents who may be struggling to cope with the unpredictable nature of life with an autistic child. She also aims to raise awareness and a better understanding of this ‘invisible’ disability. Programme Synopsis Music True Colours by Cyndi Lauper Rainbow Connection version by Gwen Stefanie 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 SafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha

Research and co-ordination: Lisa Pirihi and Carolyn Jury Presenters: Louise Ratcliffe Produced by Louise Ratcliffe and FreeFM89.0 Guests: Rebecca Armstrong MAppPsy, Researcher, Parent to Parent Rebecca researches complex requests and consults with the Professional Expert Group (PEG). She also writes for the Altogether Autism Journal and is involved in the PRISM Professional Development Series. Rebecca completed a masters degree in Applied Psychology at the University of Waikato in 2015. Rebecca has worked with children with autism, in the school and home environment, since 2013 Programme Synopsis Music “Working for the children” KGB 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 Ross Greene – The Explosive ChildLivesinthebalance.orgSafesquaresParent to Parent New Zealand IncAltogether AutismCare MattersMana Whaikaha