Living with Prader-Willi Syndrome (PWS) presents a unique set of challenges, not just for the individual but for the entire family. The constant need for vigilance, especially around food, combined with developmental and behavioural complexities, can feel overwhelming. At Liorn Support Services, we want you to know you are not alone. We are here to walk alongside you, offering specialised, compassionate support tailored to the specific needs of PWS and funded through your NDIS plan.
Understanding Prader-Willi Syndrome (PWS)
Prader-Willi Syndrome is a rare and complex genetic condition that affects many parts of the body. One of its most defining characteristics is hyperphagia—a chronic, insatiable feeling of hunger. This, along with a slower metabolism, can lead to significant health challenges if not carefully managed. PWS can also involve learning difficulties, developmental delays, unique behavioural challenges, and high anxiety.
We understand that managing PWS is a 24/7 commitment that requires a unique combination of structure, routine, and deep understanding. It’s about creating a safe and predictable environment where your loved one can thrive.
How Your NDIS Plan Can Support PWS
The National Disability Insurance Scheme (NDIS) recognises PWS as a permanent disability that can have a significant impact on an individual's life. Your NDIS plan can be a powerful tool, funding a range of supports designed to manage the complexities of PWS and help participants achieve their goals.
These supports can include:
- Assistance with Daily Living: Support with personal care, meal preparation, and household tasks.
- Improved Health & Wellbeing: Funding for dietitians and exercise physiologists who understand PWS.
- Improved Daily Living Skills: Access to therapeutic supports like Occupational Therapy, Speech Therapy, and Psychology.
- Positive Behaviour Support: Specialised plans and strategies to manage challenging behaviours.
- Increased Social & Community Participation: Support to engage in hobbies, join groups, and build social connections.
Tailored PWS Support with Liorn Support Services
At Liorn, we go beyond generic disability support. We focus on providing a team that is knowledgeable about the specific needs of individuals with PWS. Here’s how we can help:
Creating a Secure Food Environment
This is the cornerstone of effective PWS support. Our support workers are trained to understand and implement food security protocols. We work with you and your allied health team to assist with:
- Sticking to a prescribed dietary plan.
- Managing mealtime routines and structure.
- Securing cupboards and fridges to prevent unsupervised access to food.
- Providing food-free activities and positive distractions.
Positive Behaviour Support
We know that behaviour is a form of communication. Our person-centred approach focuses on understanding the triggers for anxiety and challenging behaviours often associated with PWS. We work collaboratively with your behaviour support practitioner to implement positive strategies that reduce stress and improve quality of life for everyone.
Building Independence and Daily Skills
Our goal is to empower individuals to live as independently as possible. We provide support in developing crucial life skills, such as personal hygiene, managing a budget, learning to cook safely within their plan, and participating in household chores. We celebrate every small victory on the path to greater independence.
Fostering Community Connection
Social isolation can be a major challenge. Our team is passionate about helping individuals with PWS connect with their community. We can support them to attend social groups, volunteer, find a job, or simply enjoy a day out doing something they love, all while maintaining a safe and structured environment.
A Partnership You Can Rely On
Choosing a support provider is a significant decision. At Liorn Support Services, we build partnerships based on trust, respect, and a genuine understanding of your family’s journey. We listen to your concerns, respect your expertise in your loved one’s needs, and work collaboratively to create a support system that truly makes a difference.
If you are navigating the challenges of Prader-Willi Syndrome and looking for an NDIS provider who truly understands, we are here to help. Contact us today to discuss how we can support you and your family to live a full and meaningful life.