A major worry for parents is the question of what will happen to their son or daughter when they are gone or unable to continue caring for them.
The worst time to make plans for the future is in times of crisis. Often it takes time to sort out all the issues and talk to the other people you would like to be involved in the continued support of your son or daughter.
It is important to involve the person with Prader-Willi Syndrome in the planning so their hopes and wishes can be considered. It is often the parent’s wish to share the responsibility for care so that the siblings do not have to shoulder the full responsibility.
The best way to deal with these concerns is to plan for the future by including your wishes in a legally valid Will and to communicate your wishes to the other members of the family and other support people in the care team.
A Future Planning checklist should include some or all the following:
It is possible to make a valid Will without the assistance of a solicitor, but this is generally not advisable. To avoid intestacy, partial intestacy or confusion, delays and costs associated with poorly drafted Wills, it is very important to seek legal advice. Some solicitors are willing to provide this service free-of-charge, but often they will charge a fee for the ‘execution’ of the Will.
Further information about planning for the future can be found on the Office of the Public Advocate website.
If you know that your son or daughter is unable to manage money responsibly and that in doing so it would be detrimental to their health and wellbeing then seek legal advice as to how the Will should be worded to protect the interests of your son or daughter .:
This requires appointing another person or people, which could include trusted family members or friends, as ‘trustees’ to manage and use the fund for the person with an intellectual disability in the way specified in the Will.
Refer to Planning for the future: People with a disability Booklet in this website. (Link to Resources)
Because your Will expresses your wishes at a particular point in time, it is imperative that your Will is reviewed regularly as circumstances can often change. Reviews to your Will should always accurately reflect your current wishes.
Special Disability Trusts were established primarily for succession planning by parents and family
The purpose of the trust is to assist immediate family members and carers who have the financial means to do so, to make private financial provision for the current and future care and accommodation needs of a family member with severe disability and receive means test concessions.
To assist in understanding Special Disability Trusts, further information can be found on the Australian Government Department of Social Services website.
A trust can be included in a Will, so it doesn’t begin until after you are deceased.
A trust can also be set up while you are alive. It will be necessary to prepare a trust deed which is a legal document.
It is necessary that, before a Special Disability Trust is established, the prospective trust beneficiary be assessed as severely disabled under the legislation for this type of trust. The Australian Government Department of Social Services provides information on the Assessment process and that information can be found on their website.
