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Mother‘s way forward supporting disabled people

Nathalie Thomas, left, helped set up the Chrome Collective with Ruby, centre, and Shelley Robinson. Supplied photo.

Shelley Robinson has experienced many ups and downs over her daughter Ruby’s life.

The 18-year-old Ruby has Global Developmental Delay and Autism, and Shelley had been worried about her future for some time.

Leaving school was one of those worries. She was concerned about how her daughter would transition into the real world – a world filled with many physical, social and attitudinal obstacles.

Research shows that when people with disabilities finish school, it can be incredibly challenging to embed into communities, to find paid employment and make money to enable self-worth and to live well.

Shelley wanted to do something about this. She set up the Chrome Café in Katikati over three years ago with the intention to employ as many people with a disability as she could.

Her next big dream was to set up a community collective where individuals with and without disabilities could work alongside each other to create products for sale. But she was held back by a lack of energy and support.

It was only after attending a conference last year with families and agencies around the school transition that she connected with a charity that would help turn her dream into a reality.

"I ended up sitting with Jane Ford from Parent to Parent, and I found her really engaging. She was there to learn as well as offer support to families and liaison between all groups represented," says Shelley.

"By the end of the two days, I was really quite overwhelmed and relieved that I may have found a way forward for my daughter as well as many others. Jane has since been supporting me with all the advice and information I need to help bring my idea to life."

Now, the Chrome Collective is almost ready to open up. Entrepreneurs with a disability will use the workspace and retail space to come up with an idea and create goods for sale.

By creating this employment and training opportunity and encouraging participation from different groups within our community, Shelley hopes social barriers can be broken down, and acceptance and support can be created.

She says it wouldn’t have been possible without the support of Parent to Parent.

“Parent to Parent is so valuable because they are working really hard to support us parents with a true understanding of how challenging it can be.

“I really needed this to happen, to have belief and faith that we can actually lead meaningful lives. Because this is a very real concern for all families who have someone with a disability. I am very excited to be setting up this venture and would like to see it in every community.

“We are working very closely now with the Taiao here in Katikati and through networking have major community support. From my perspective, the fact that I have been supported by Parent to Parent, even with just a phone call if I need to, has kept the momentum and focus going in the right direction.”

Parent to Parent is a charity that empowers families of people with disabilities and health impairments through free information and support.

One of Parent to Parent’s most unique service offerings is their parent support network, where specially-trained volunteer support parents are connected to those families new to the world of disability.

Through their own journey and lived experience caring for a child or family member with a similar disability, support parents are able to provide a listening ear and practical solutions.  

Another core part of Parent to Parent’s work revolves around providing the latest research and information to families.

With three dedicated researchers in their national office, they are able to provide information on nearly 4000 conditions - from the very rare to the more common.

The charity also runs family activities, therapeutic women’s retreats, a men’s chat group, and a wide range of programmes and workshops; from camps for children who have a sibling with a disability, to courses in self-advocacy, navigating the system, and understanding a child’s entitlements at school.

Jane Ford is the Parent to Parent Coastal Bay of Plenty Regional Coordinator.

She says their work with 1996 families in the Western Bay of Plenty is important for the families’ wellbeing.

“What you find is a lot of the parents are just so lonely as they are busy trying to survive, trying to keep their family together.

“Being able to connect parents together so that they can be with like-minded people that understand is so important - they’ve got so much information to give themselves to the other parents. What’s really special though is the friendships with the children, siblings and parents.”

TECT has supported Parent to Parent Coastal Bay of Plenty since 2004 with more than $50,000 in funding. Jane says the funding helps the charity make a real difference in families’ lives.

"TECT’s funding is so vital as we get no government support. It makes such a huge difference, as it covers our operating costs, and we can put that towards any of our programmes here in the Bay.

"It has supported things like our Tane Talks men’s chat group, with some of the funding last year helping us take the guys out on a fishing trip.

"The men really feel like they should be the strength in the family, so it is really isolating for them. It was beautiful to see them connecting on this trip, to share experiences and know they aren’t alone."

Jane says seeing Shelley come such a long way has also been a special experience.

"When I met Shelley at a workshop a year ago, she had no faith in the system. Now she has come so far and is supporting other families. That’s pretty special and cool for me to see. TECT’s funding is making it happen."

To learn more about Parent to Parent, visit https://parent2parent.org.nz/coastal-bay-of-plenty/.

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