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:
Wills Wills can be an important way to help ensure continuity of support when you are no longer there. Dying without a will means that if you have some money or a house you do not have a say about to whom the money or the house will go to. In addition, different rules apply if you have movable property (such as goods) or immovable property (such as land) that has not been dealt with in the Will. This can make matters very complicated.
Estate planning This includes property/real estate, cash and bank accounts, investments and insurance policies, household furniture, clothing, and personal items.
power of attorney,
trusts and special disability trusts (link to Trusts Section)
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.
Seek financial and legal advice before you leave your son or daughter money or property directly.
Take into consideration your sons or daughters’ capacity of managing the money or property without some support.
You also must take into consideration how the money and the property will affect their eligibility to access the disability pension.
What do I do if my son or daughter with PWS do not have the capacity to manage money?
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 .:
The will could include leaving a share of the will in a trust
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)
A trust can stipulate specific requests such as a weekly payment. funds for a holiday or other special payments, in addition to the disability pension payment.
There are different kinds of trusts and you should seek legal and financial advice to determine which kind of trust is best suited to your situation.
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
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.
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.
Planning for the future: People with a disability Booklet
Planning for the future: People with a disability Booklet The Australian Government Department of Social Services has developed a detailed booklet outlining information and advice to assist families in planning future arrangements for the ongoing care of their family member with a disability that is positive, sustainable, flexible and fulfils the wishes of both the person with a disability and their family where possible.
Special Disability Trusts – Getting things sorted booklet
The Special Disability Trust booklet and the Planning for the Future: People with Disability booklet are intended to make things simpler by explaining the options. This booklet deals briefly with planning for the future taking account of disability issues generally and how families can use trusts to help look after family members with disability. It also explains how income support (social security and veterans’ entitlement) concessions for Special Disability Trusts can help in providing for family members with severe disability.
If you are writing your Will please consider leaving a bequest to PWSA Victoria . A gift in your Will is a special way to show your support for the work that Prader-Willi Syndrome Association of Victoria does for people who have PWS and their families. Your gift will help the Prader-Willi Syndrome Association of Victoria to continue with its good work to support, educate and advocate on behalf of the Prader-Willi Syndrome community in Victoria. Help us to improve the future for all everyone with Prader-Willi Syndrome.