As with food, security surrounding access to money is also essential. When a child moves through their teens and into adulthood, routine, security and guidelines are important as money is a means to access food. Without this security, there are many health implications, including unchecked weight gain and a danger of necrosis of the stomach wall due to binging while having the opportunity.
Individuals with Prader-Willi Syndrome (PWS) are liable to make extravagant and unwise purchases, and to be manipulated into sharing cash or entering into contracts without due care.
Parents and Carers do not have an automatic legal right to manage their son or daughter’s finances. Parents should also not rely on their son/daughters acceptance and compliance of restricted or supervised spending to be such an easy task after reaching the milestone of independence at age 18.
In adulthood, some individuals will be quite happy for their parents or carers to continue to manage their finances; for others, it can be a frustrating and emotional time. To agree to the loss of control in another area of their lives, an expectation that their peers would take for granted can be a blow to the individual’s self-esteem, and they may be angry. The beginning of adulthood is not a good time to begin discussions.
Incidental, gradual discussions with your son/daughter about the supports available to help them to be independent as they move closer to adulthood are important before NDIS and pensions become available. These conversations must be appropriate for age and understanding, but having these small discussions over time will hopefully make the decisions and discussions when transitioning into adulthood a little smoother.
Adults with Prader-Willi Syndrome need to feel empowered, so it is vital that they have some input into decisions so that there is a clear understanding of their needs and desires when preparing a management solution. You should discuss options available that will provide them with the maximum independence while keeping their money safe and themselves healthy.
For further information and advice regarding options, we recommend that you contact the Office of the Public Guardian (or similar service) in your State. They will be able to provide information on the formal options that are available.
It is always best to plan ahead, and we strongly recommend that you consider and research options available well before your son or daughter reaches the milestone of independence at age 18. When considering a formal Administration or Guardianship arrangement, we recommend you consider all options available and what is in the best interest of your son/daughter.
There are many resources available for you to consider, and the process will differ in each state. We suggest starting with The Office of Public Advocate and further researching information from there.