A brilliant resource exists to help working carers who care for a person with disability plan for the future.

It is called ‘Planning for the Future - People with Disability: Improving the lives of Australians’. Written originally a couple of years ago, it has recently been updated by the Australian Department of Social Services.

The guide is comprehensive, easy to understand and incredibly well researched and written. It features loads of pertinent examples and questions and answers parents and other family members most often ask about future planning.

As working carers know, a major concern for a carer of a person with disability is how the person they care for will be supported in the future when they are no longer able to provide the love, support and care themselves.

This is of greatest concern to parents of children with high support needs. Most people with disability are capable of making their own decisions or contributing to the decision making processes about their own future needs, support and care. However, some family members with disability will have a low level of control over their lives and will therefore not be participating actively in the decision making process.

Research indicates that many people wish to make private financial provisions for the future care and accommodation needs of a person with disability but do not understand the steps they should take to plan for the future.

This booklet has been written to assist people in finding information and support to plan for the future wellbeing of a person who has high support needs. It has been designed to assist families to consider the issues involved in making decisions based on sound knowledge. It encourages families, particularly parents, to take into account their own future needs as well as those of their son or daughter with disability and other family members’ needs.

The information aims to assist families to plan future arrangements for the ongoing care of their family member with disability that is positive, sustainable, flexible and fulfils the wishes of both the person with disability and their family where possible. The issue of whom to trust for advice and ongoing involvement in the plan can be a major issue for families and can affect their ability to make decisions.

The booklet is divided into sections to assist families to navigate the options available when implementing a plan for the future. While systems can be set in place to safeguard the financial future of their family member, planning for the future requires much more than just an understanding of the legal processes available.

Planning for the future is about taking steps now to put plans into place, and not just about when you are older and can no longer provide the level of care the person needs.

The booklet is divided into six sections:

Section 1: Future planning: things to consider helps families to think through some of the issues to consider when planning for the future of their family member with high support needs and encourages families to take a ‘whole of life’ approach to planning.

As families face the issue of how to provide a sustainable future and safeguards for their family member, their access to information to support them in their decision making may be limited to advice from lawyers or financial planners who themselves may be ill informed in this area. Many people with disability are now outliving their parents, so preparing for the future is now more of an imperative than it was in the past. Each family has diverse needs according to its circumstances.

People and their families can be proactive in planning for the future. The key is to create a clear vision of what this future might be and develop a plan to make it happen. As parents it is important to ask the question: ‘What outcome does my son or daughter desire for the future support and what do I hope and wish for him or her?’ It is beneficial for parents to include other family members when reflecting on this question so that siblings and others have input into the process. Work as a family and involve your family member with disability as much as possible.

Planning for the future support for a person with high support needs is not just about what will happen after you die. Our lives are uncertain and your plan may need to go into effect tomorrow rather than some time in the distant future. There are circumstances where it becomes desirable to make provision for a person at an earlier time – for example, if there is a significant risk that the principal financial provider may become unable to continue to manage the affairs of the person with disability due to illness.

Section 2: Planning for the future: choosing the right option is about the options available to families when planning for the future and is written in a question and answer format to assist you to find information relevant to your needs.

If the person with disability is able to manage their own money or manage money with informal assistance, it is less likely that you will need to make special arrangements. You can use family resources the same as you would for family members who do not have disability. You can give assets to the person with disability through your will or a trust just the same as you would do for other members of the family – usually by a direct gift.

However, there are two main reasons why it might be a good idea to make special arrangements.

  1. If the disability affects the person’s mental capacity (such as intellectual disability, brain injuries, mental illness or dementia), the person with disability may need help to manage assets or money.
  2. Sometimes you will want to keep more control than usual over how family resources are used in the long run, even if the person with disability can look after their own affairs. You may want to control how family resources are used after the person with disability no longer needs them.

Section 3: Setting up a trust examines how to set up a trust to provide for a family member with high support needs and contains questions and answers about trusts.

A trust is a legal obligation placed on one person, called the trustee, to look after the assets of the trust for the benefit of another person or a number of people, called a beneficiary or beneficiaries.

A trust can be a very good way to control assets for the benefit of a person with disability. A trust can continue to look after some of the interests of a person with disability after your death. It is a structure you set up to operate before or after your death, which can continue into the future.

If you have decided to use a trust to provide for a family member with disability, the main decisions that you will need to make are:

  • Who will be the trustees?
  • How will I divide up my assets to deal fairly with the person with disability and other members of the family?
  • What accommodation and care options should I provide for?
  • How much discretion and direction do I give the trustee?

These questions are discussed in this section.

Section 4: How to access legal and financial advice includes information sheets to provide lawyers and financial advisers with information they may need to best advise you.

Lawyers may be very good at giving legal advice regarding making a will or establishing a trust but less knowledgeable at understanding the needs of people with disability and the current situation regarding social and disability services. When trying to find a lawyer appropriate to your needs it is useful to ask other families, or people you know who are in a similar situation to yours, how they have gone about finding a lawyer and if they have a recommendation.

If you are not able to get a recommendation, some states and territories have legal centres which specialise in providing services to people with high support needs. However, most states and territories do not have these centres, so contacting a Community Legal Centre or the Law Society where you live may be the best place to start.

If your lawyer is not familiar with advising on issues related to the area of disability and estate planning for a person with high support needs, you may need to educate him or her. If you have a well-developed plan you can tell the lawyer about the things in your plan that you won’t change and the things that you need advice on.

Finding a financial planner

Knowing who to trust to assist you in making financial plans can be a major source of anxiety for family members. Knowledge about disability and issues related to future planning may not be in the range of expertise of many planners. If you decide with your lawyer that you would benefit from advice from an accountant or financial planner, and you do not already have a relationship with such a person, a good starting point is to ask around amongst other families in your situation and amongst your networks to find out if they have information or advice in this area. They may be able to recommend you to someone.

Most financial advisers have limited knowledge about the issues facing a family who are providing for a family member with high support needs. When choosing a financial adviser, ask about their personal experience with advising people in your situation. The Financial Planning Association of Australia T: 1300 626 393 can assist you in finding an accredited planner in your area. They do not, however, have information about a planner’s expertise in the area of planning and disability.

The Australian Securities and Investment Commission’s Moneysmart website T:1300 300 630 has information on Choosing a financial adviser and a number of publications including Financial Advice and you which is a guide to finding a financial adviser.

Section 5: Useful contacts provides information on other available support services and gives some suggestions for further reading.

Section 6: Planning templates provides a care plan checklist for you to complete with your family, and an information pro forma to complete and provide to your lawyer.

Before you see someone for legal or financial advice it is important to work out as far as possible what it is you need (goals and plans).

Ensure that there is discussion on what the needs of each family member are now and in the future, but keep the focus on the person with disability. It is also important that the family member with disability is given the opportunity to provide as much input as possible.

While it may not be possible for all the goals you identify to be achieved, do not allow this to stop you planning and working towards a positive outcome for the future.

*Source: Planning for the Future - People with Disability: Improving the lives of Australians; ISBN: 978 1 921130 69 4. This booklet was updated in 2014 by the Department of Social Services.

This booklet is a guide only and you should get appropriate legal and financial advice before implementing your plan.

Download the entire book (available in 13 languages) here:

https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/general/planning-for-the-future-people-with-disability-booklet