Home / Conditions we support / Genetic conditions
Genetic conditions · Western Sydney
Support for genetic conditions, planned around you
Fragile X syndrome, Prader-Willi syndrome and other genetic conditions affect each person differently. We get to know you and follow the plans your health team and behaviour support practitioner put in place.
Fragile X syndrome affects around 1 in 4,000 males and about 1 in 6,000 females.
A defining feature of Prader-Willi syndrome is hyperphagia, a compulsive urge to over-eat.
Source: Prader-Willi Syndrome Australia
Locking the fridge to stop someone eating too much food is an example of environmental restraint, a regulated restrictive practice.
Understanding genetic conditions
Understanding genetic conditions
Many genetic conditions are rare, and two people with the same condition can have very different needs. Good support starts with getting to know the person, their family and the advice from their health team.
Fragile X syndrome is the most common known inherited cause of intellectual disability, and up to half of males with Fragile X also meet the criteria for autism. People with Fragile X are often friendly, empathetic and funny, with a very good visual memory. Anxiety, including social anxiety, is common, and busy or noisy places can be hard.
Prader-Willi syndrome is a rare and complex genetic condition. A defining feature is hyperphagia, a compulsive urge to over-eat, and there is no medical way to curb the appetite. Many people need strict supervision of their diet, which can include limits on access to food that must be planned and authorised under NDIS rules.
Everyday life
Everyday life with a genetic condition, planned well
Fragile X syndrome, Prader-Willi syndrome and other genetic conditions affect everyday life in different ways. These are common areas where steady, well planned support can help, always following the person’s own plans.
Steady routines
People with Prader-Willi syndrome often find frequent changes of routine hard. If a change is needed, one bigger change can be easier than many small ones. We plan changes early and explain them clearly.
Knowing when food is coming
For people with PWS, food security means knowing what food they will get and when. We keep to set meal and snack times, the health team’s advice and any authorised limits in the behaviour support plan.
Busy places and anxiety
Anxiety, including social anxiety, is common in Fragile X syndrome, and taking in lots of sensory input at once can be hard. We plan outings for quieter times, build in breaks and introduce new people slowly.
Learning by seeing
Many people with Fragile X have a very good visual memory, while abstract ideas like maths and time can be harder. We teach cooking, shopping and travel with photos, demonstrations and short, clear steps.
Work and day programs
Prader-Willi Syndrome Australia suggests a key worker, short instructions, notice of changes and food only at set eating times at work. We help people settle into work with these supports in place.
Money and shopping
For some people with PWS, the team agrees how access to money and food shopping is managed. We follow what has been agreed in the person’s plans while practising budgeting and shopping skills.
How we help
How Skillwise can help
Every support is planned around your goals and what your NDIS plan funds. Start with what you need now, and change it as your plan grows.
Shared homes that work for everyone
SIL homes set up around each person’s plan. If someone has authorised limits on food access, we follow them exactly as written in their behaviour support plan. Supported Independent Living →
Calm, predictable days
Daily routines with set meal and snack times, planned activities and plenty of notice before changes, to help ease anxiety about food and the unexpected. Personal care →
Skills that fit the plan
Practise cooking, shopping and budgeting in ways that match the dietary advice from the person’s health team, plus social skills for busy places. Daily living & life skills →
Getting out with confidence
Outings planned ahead with a known route, quiet breaks and a plan for food on the day, so people can enjoy sport, shops and local events. Community participation →
Living at home
Shared living with a genetic condition, done carefully
Supported Independent Living (SIL) is help with, or supervision of, everyday tasks at home, so people can build skills and live as independently as possible. It suits people who need a lot of support through the day. For someone with Prader-Willi syndrome, Prader-Willi Syndrome Australia stresses consistent staff, a steady routine and shared house rules, with casual staff kept to a minimum.
Housemates matter too. Food limits in one person’s plan can affect others in the home, and Prader-Willi Syndrome Australia notes that mixed ability settings can be challenging, so we think carefully about who shares a home and how each person’s plan is respected. SIL funds support workers, not rent, groceries or bills, and the NDIA decides whether SIL is in a plan.
Families and carers
For families and carers
Families of people with a rare condition often know it better than anyone. We value that knowledge. With your agreement, we read the information you share, follow the advice of the person’s health team and keep you updated on how things are going.
Our team speaks English, Urdu, Punjabi, Hindi, Arabic, Dari and Pashto, so you can explain a complex condition in the language you are most comfortable with.
Tip 1
Share written plans from the health team, dietitian and behaviour support practitioner before support starts.
Tip 2
Tell us about routines, calming strategies and strengths, such as humour or a great visual memory.
Tip 3
For PWS, agree as a team on meal times, food access and money, so everyone gives the same message.
Tip 4
Connect with others who understand through groups like the Fragile X Association or Prader-Willi Syndrome Australia.
Good to know
What good support looks like
What we don’t provide. We do not provide medical or dietitian care, therapy, nursing, high intensity supports or behaviour support plan writing. People with Prader-Willi or Fragile X syndrome often need specialist health care, so we work alongside their doctors, dietitian, behaviour support practitioner and family.
- Consistent workers who know the person and their plans
- Steady routines and plenty of notice before changes
- Respectful food support that follows the health team’s advice and the behaviour support plan
- Building on strengths like humour, visual memory and friendship
Behaviour support plans. Some people with Prader-Willi syndrome have food access limits, such as a locked fridge or pantry, in their behaviour support plan. We do not write these plans, but we follow them exactly as authorised, explain them to the person, record their use and support the practitioner to reduce them where it is safe.
NDIS funding
NDIS funding for genetic conditions
NDIS plans can include Core, Capacity Building and Capital budgets. Core supports cover everyday activities, such as help with daily life, social and community participation and transport. Capacity Building supports focus on building independence and skills, such as improving living arrangements and finding and keeping a job. People with genetic conditions may use these budgets for the kinds of support Skillwise delivers, depending on their plan.
A diagnosis on its own does not decide funding. The NDIA decides who can access the scheme and which supports are funded, based on the person’s goals and how disability affects daily life, so we cannot promise any particular funding. If you already have a plan, we can go through it with you and explain which supports we can deliver.
How it works
Getting started with Skillwise
Four simple steps. Bring a family member, carer or support coordinator along if you like.
1. Call or send a referral
Ring 0474 151 264 or make a referral online. We usually reply within one business day.
2. A friendly first chat
We talk about your goals, your daily routine and any health, behaviour support or mealtime plans you already have.
3. Your plan, explained
We go through your NDIS plan and service agreement in plain words, in the language that suits you.
4. Support that fits you
We match you with support workers who suit you, and keep checking in as your needs change.
Kind words
What participants and families tell us
Skillwise made our NDIS experience simple and stress-free. Their team truly listens and supports us every step of the way. I always feel my daughter is in safe and caring hands.
The Skillwise team helps me live more independently and with confidence. They are patient, respectful and always ready to assist. I’ve grown so much since joining their support program.
Skillwise staff treat me like family. They’re kind, reliable and genuinely care about my goals. Their support has made a real difference in my daily life.
Questions
Genetic conditions NDIS support: common questions
Can’t see your question? Call us on 0474 151 264 and talk to a real person.
Can you support someone with Prader-Willi syndrome?
Yes, with daily living, life skills, community and SIL supports. We follow the dietary advice from the person’s health team and their behaviour support plan, including any authorised limits on food access. We do not provide medical or dietitian care.
Is a locked fridge a restrictive practice?
Yes. Under NDIS rules, locking a fridge to stop someone eating too much is an environmental restraint. It should be part of a behaviour support plan, explained to the person and used less whenever possible. We only use it as the authorised plan says.
How do you support people with Fragile X syndrome?
We keep routines steady, introduce new people and places slowly, plan quiet breaks and build on strengths like humour and visual memory. If the person also has an autism diagnosis or a behaviour support plan, we follow that guidance too.
Can we speak to your team in our own language?
Yes. Our team speaks English, Urdu, Punjabi, Hindi, Arabic, Dari and Pashto. Explaining a rare condition is easier in the language you are most comfortable with.
What if the condition is rare and you have not supported it before?
Tell us about it. We will read the information you share, talk with the health team if you agree, and follow their guidance. We only take on support we are registered for and can provide safely, and we will tell you if another provider is a better fit.
What is food security for someone with Prader-Willi syndrome?
Prader-Willi Syndrome Australia describes food security as a state of mind: the person knows what food they will get and when, and that extra food will not be offered. Clear, steady routines are part of this. We follow the person’s meal plan and behaviour support plan.
Can you support someone with Fragile X syndrome at work?
Yes. Employment support can help with the trip to work, learning tasks through pictures and demonstrations, and settling in with the team. Many people with Fragile X have a good visual memory and a friendly, sociable nature, and we build on these strengths.
How do your workers learn about the person's condition?
Before support starts, we brief the workers using the plans and information you and the health team share, and we keep the team small and steady. For PWS, Prader-Willi Syndrome Australia recommends staff are trained in dietary and behaviour management.
More help
Organisations that can help
Fragile X Association of Australia: Registered charity supporting people living with Fragile X and their families, with a helpline and counselling.
Prader-Willi Syndrome Australia: Family led organisation with information and support for people with PWS, families and support providers.
Rare Voices Australia: The national peak body for Australians living with a rare disease, with a Rare Disease Directory.
Other conditions
We also support
Skillwise supports people with a range of disabilities across Western Sydney. See all conditions we support.
Supports we provide
Ten ways we can help
From daily living at home to work, community and life changes, find the support that fits your NDIS plan.
Get started
Talk to us about your plan
Call us, send a referral or drop into our Rooty Hill office. We’re open Monday to Saturday, 8am to 5pm, and our team speaks English, Urdu, Punjabi, Hindi, Arabic, Dari and Pashto.