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

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

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

• Office for Disability Issues budget information
• 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

Programme Synopsis

• Louise and David interview the Parent to Parent Volunteer Co-ordinator Carol Armstrong about the recent SafeSquares campaign

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

• Safesquares
• 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

Programme Synopsis

• Louise and David interview the Parent to Parent Volunteer Co-ordinator Carol Armstrong about the recent SafeSquares campaign.

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

• Safesquares
• 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: 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

• Louise and David discuss the issues of planning for the future when you have children with special needs and what you might need to consider
• Louise and David talk to Tiffany Wilkinson about what she and her family have done to plan for the future for her brother to have the best life he can.

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

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

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

• 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
• 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 Wintec Music and Performing Arts

Programme Synopsis

• In the run-up to Christmas Louise talks through some practical ideas for managing Christmas with special-needs children, and how to minimise stress and maximise fun this holiday season

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 Inc
• Altogether Autism
• Care Matters or 0508 236 236 freephone service for carers
• Mana Whaikaha – MidCentral only

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

• Louise finds out how anxiety presents in people, and how it differs from day-to-day stress
• Matthew gives us some practical strategies for preventing and dealing with anxiety, with
  reference to Christmas and the holiday season being a particularly stressful time of year for parents.

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 Wellness
• Depression NZ
• Sparx online game for anxiety and depression
• Safesquares
• 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 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

• Louise finds out all about the new pilot programme for Enabling Good Lives - Mana Whaikaha – being rolled out in the Mid Central Region

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 Whaikaha
• Safesquares
• 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 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

• Louise and Rebecca discuss the meaning of the social vs the medical model of disability, and what that means for how we care for people in society.

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

• Safesquares
• 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 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

• Ali tells Louise all about their family journey to Emilia’s diagnosis and how it has impacted their lives

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

• Safesquares
• 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 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

• Ali tells Louise all about their family journey to Emilia’s diagnosis and how it has impacted their lives

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

• Safesquares
• 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 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

• Self-care and self-compassion for parents
• Understanding and re-framing challenging behaviour

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 Child:
• Livesinthebalance.org
• Safesquares
• Parent to Parent New Zealand Inc
• Altogether Autism
• Care Matters or 0508 236 236 freephone service for carers
• Mana Whaikaha – MidCentral only