Lived experience blog

My name is Tammy Milne and I live in Tasmania. I was born with Arthrogrophosis multiplex congenita, which basically means the muscles and bones in my legs, shoulders and throat are weak and malformed. I am 60 years old and wear it as a badge of honour to have survived this long.

My name is Tania Lewis, I am 52, I’ve been married to my hubby Lenny for 35 years. He is my best friend in life, we have known each other since we were little. Together we managed to create our daughter, she is beautiful, she is 25 now and is doing her own life. Life hasn’t always been great for us.

As Rick says, home wasn’t built in a day, but he shares some valuable tips after his recent move into his own SDA apartment.

Meet Katy who is sharing her lived experience as part of our Co-design team.

After more than 4 years living in aged care William was finally able to move into a specialist disability accommodation apartment with the help of the Aged Care to Home service. The move came 4 days before his 52nd birthday.

Hi, I’m Bruce, 52 years young, living in an SDA apartment on the Gold Coast. I have a disability called arthrogryposis, which affects both joints and muscles of my major joints.

Julia recently joined the Co-design team at the Summer Foundation. She shares her story and tells us about her work.

We first met Lisa 2 years ago when she was living in aged care. Louise, from the Summer Foundation, chatted with Lisa about how she is going with living in her own home.

As the year draws to a close, we wanted to reflect and say thank you to all our contributors who generously shared their stories for our Staying Connected page. 

My name is Bridget Doyle. I’m 28 years old. I love going out for coffee, listening to music, walking my dog Lily, playing board games with friends and pottering around in my garden growing my own fruits and veggies.

It’s International day of people with disability, long time contributor to the work of Summer Foundation, Lynne Foreman shares her ideas and thoughts on the day.

Hear from Samar Bain, NDIS participant and support worker trainer, who featured on the panel at the Summer Foundation Annual Public Forum.

We met Andrew last year and since then have been working with him on a number of projects. Sharing his voice, experience and insight he is helping to educate and improve outcomes for people with disability.

Hi my name is Frances. I’m a mature woman with a disability who is trying to live my best possible life, which has included working and travelling around the world. This has enabled me to work and be involved in some amazing projects. I’m also a carer for someone with a psychosocial disability.

Meet Suzie – she has been living with a brain injury for 20 years. She writes about her experience and explains why it is important for people to understand brain injury.

Brendon waited for 918 days to get the correct level of funding to continue living in his 1-bedroom specialist disability accommodation in Queensland.

Earlier this year the Summer Foundation supported Xavier and his family to find and move to a suitable house in Echuca. We caught up with Xavier’s grandmother Roz to see how things are going.

Summer Foundation contributor and NDIS participant, Elizabeth Ratcliffe has participated in the NDIS Review.

You can too.

Kelly was interviewed for this month’s Summer Foundation Focus newsletter about her experience of moving out of aged care and into SDA.

Meet Maha, who recently joined the NDIS. Maha shares her experience and why she chose to make a submission to the NDIS Review

We first met Connor during the more than 2 years he waited to get the right SDA approval in his NDIS plan. Late last year Connor finally moved in to his own apartment.

We first met Daniel almost a decade ago, when he lived in a nursing home. Last year, Daniel moved into his own SDA apartment.

Last year we began working with Samar. Samar shares her experience of moving into SDA and explains why she wanted to share her story.

Earlier this year, we met Tobias. He has recently become an NDIS participant and has been working with us to highlight the strengths and challenges of the National Disability Insurance Scheme.

Meet Elizabeth, she lives with Cerebral Palsy. She writes about her experience and explains why International Day of People with Disability is important.

Anna recently met Bill Shorten in her new SDA apartment. She writes about her housing journey and why she shares her experience.

In late 2021 Lu and Gina met Ned, his housemates and his family to capture their experience living in an ‘individualised living option’ (ILO) homeshare arrangement. Lu caught up with Ned recently to chat with him about some recent changes.

It’s Brain Injury Awareness Week!
Meet James – he has been living with a brain injury for 18 years. He writes about his experience and explains why Brain Injury Awareness Week is important to him.

Jamie-Lee, lived experience facilitator at the Housing Hub, writes about how her life changed when she moved into her own SDA apartment. Read her latest blog on the Housing Hub.

Connor worked with the Summer Foundation team on the Down to 10 Days Campaign.

Read about Connor here.

“I couldn’t access a shower, my front door or kitchen for 14 months and 16 days. ”

Rachel speaks about her experience of waiting for SDA and the impact that it had on her life.

Jamie-Lee writes about her experience of waiting 12 months for SDA and the impact that had on her life.

Meet Karen, who is sharing a poem she has written about her experience living with Cerebal Palsy.

Paulene shares her experience of moving from aged care into her own SDA apartment in the Summer Foundation Annual Report.

The Summer Foundation’s Information Service and Lived Experience Advisor, Emma Gee, chats with one of the organisation’s Lived Experience Facilitators, Shanais Nielsen, about the best ways to plan, navigate, stay positive and up to date in this COVID world. 

Helen has been a long-time contributor to the work of the Summer Foundation. She shares her lived experience of disability in an effort to create change. Helen worked with a team to create resources for people who are thinking of moving out of aged care.

It really has been such a pleasure speaking with George Taleporos in his Reasonable and Necessary podcast, discussing such a relevant and important issue. COVID-19 will probably affect us all, or at least someone close to us.

Meet Kate, she has been living with MS for 26 years. She writes about her experience and explains why International Day of People with Disability is important.

Meet Jono. Jono’s journey to SDA has taught him you have to fight not only for what you require but also for what you deserve. He shares his housing journey in the Summer Foundation Annual Report.

The Summer Foundation’s Curator, Gina Fall, chats with Helen Burt about her work in a Summer Foundation codesign project.

Emma chats to Shanais again about her experience of adjusting to the new world where we are learning to live with COVID in Victoria.

Earlier this year, Lu and Gina met Ned, his housemates and his family to capture their experience living in an ‘individualised living option’ (ILO) homeshare arrangement. Lu caught up with the housemates recently to see how it is all going.

New podcasts, videos and support tools are now available on the Housing Hub website to help people moving out of aged care. Emma Gee, Summer Foundation staff member, speaks about creating these tools with a group of people with experience of the moving process.

Meet Greg, he has been living with a brain injury for 33 years. He writes about his experience and explains why Brain Injury Awareness Week is important to him.

Emma chats to Shanais about her experience of the Covid19 lockdowns. Their conversation includes a few learnings and tips for us all to consider in living life in lockdown.

Liz’s poem tells how she embraces life with her support workers.

Wendy has recently moved into her SDA apartment and shares her experience.

Meet Pam Dean, Summer Foundation casual employee and volunteer.
Pam featured in the Summer Foundation newsletter this quarter, read her profile here.

Read about opportunities for people with lived experience of disability to feel empowered from our contributors at the Summer Foundation – James, Helen and Linda.

Today, Paulene sits comfortably in her new specialist disability accommodation (SDA) apartment overlooking the city. “I feel free, just so beautiful, I feel like I’m on top of the world…”

Gina, a Summer Foundation Program Officer in our Lived Experience Team interviewed some people with disability in our network about their experience of this new ‘Call-to-Test’ Procedure.

“Smile Em,” my sister instructs from behind her camera. I’m sitting fully masked (posing as directed) with my nieces and nephew standing at the required COVID distance.

Personally, COVID-19 hasn’t really impacted me in a bad way and has actually been a lovely opportunity to spend quality time with my family. I have really missed my support…

Staying COVID-free mainly… Especially in a household where we have support workers coming and going. Luckily I have a great team of women supporting me who understand…

My biggest worry is getting COVID-19, because I have no idea and no control over who people who come into my home are mixing with outside my home.