Her Own Home with Family Nearby

submitted by Lisa, Julia’s twin sister

Julia is a 55-year-old woman living with Prader-Willi syndrome in Queensland, Australia.

What steps did you take to prepare for her life as an adult?

Julia secured funding through the Australian NDIS system to live Independently. We then looked for a placement that was close to family and support workers who understood PWS.

What does independence look like?

Julia cohabits with another lady who lives with disability. She has 24/7 support, and assistance with every aspect of her life. Julia has her meals delivered each week for breakfast, lunch, dinner and snacks; this service is partially funded. Because the meal delivery service ensures that Julia has portion-controlled meals she is at a healthy weight and can participate fully in community life. Julia participates in a range of activities that she enjoys, including Bingo, library visits, country music nights and gym workouts.

What supports are in place?

Julia is supported at all times by a roster of support workers. She lives with restrictive practices to ensure that she has no access to additional food, so her fridge and cupboards are locked shut and bins cannot be accessed. Julia has a specialist Behavioural Psychologist who has decades of experience with PWS and who works with Julia to get the best outcomes for her and who also trains her support team.

Romantic Relationships

Julia has only ever had a boyfriend when in high school. She struggles to maintain long term relationships, although she is very talkative and friendly with people she has just met. Julia has never shown an interest in having an adult romantic relationship.

Volunteer/Work in the Community

Julia doesn’t work but she does do some volunteer hours at a puppy rescue facility, and she really enjoys this. Julia has supervision while interacting with the animals.

Advice for Parents on Preparing for Adulthood

Start to plan when kids are entering puberty and accept that the ‘perfect’ accommodation situation might not exist, but you can find a ‘good or even a great’ option if you are persistent.

More about Julia

Living independently is life changing for people living with PWS and for their families. It means freedom to enjoy family time with PWS loved ones without the exhaustion and the responsibility of looking after them 24/7. Julia really values having her own home and her own life, while knowing that her family love her very much and are not far away.

Thank you for sharing Julia’s story with us!

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What steps did you take to prepare for their life as an adult?
What does independence look like for them?
What supports do they have in place?
Do they have romantic relationships? If so, how are those managed?
Do they work/volunteer in the community? If so, what does that look like?
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