Section 1: Future planning: things to consider
In order to provide for the future of a family member with high support needs, it is important to spend some time reflecting on what your hopes and dreams are for the future for that person and also what hopes and dreams they hold for themselves. This is creating a vision to enable you to put plans into place that aim towards fulfilling that vision to the best of your ability. There is no ‘one size fits all’ as each person will have their own hopes, dreams and wishes.
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 carers 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.
To avoid conflict later on, ensure that there is discussion on what the needs of each family member are now and in the future. However, keep the focus on the person with disability. It is vital that wherever possible the family member with disability is given the opportunity to have as much input as possible into what their vision is for their own future and that they are given the support to realise this vision. A person’s level of cognitive understanding will impact on their ability to participate in this decision making. While reflecting on the vision and planning for the future it is essential to keep the person with disability at the centre of your focus.
Thinking about providing a sustainable future for your son or daughter with disability can raise many fears and concerns. It may be useful to look to someone in your network or your community for support and guidance when considering these issues. Give some thought to where you might find this support. Develop a ‘wish list’ of all the things your family member desires as this will help you and others who may come after you to make sound decisions for their wellbeing. Update this list as the person’s age and circumstances change.
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.
A secure and sustainable future for your son or daughter with disability will be more likely to be achieved if there are committed others in their lives in the long term. As part of your planning you may wish to set up such a group, often referred to as a ‘support circle’ or ‘personal network’. A support circle or personal network can include family, friends, and others committed to your family member, for example an advocate who is close to the person or a church elder.
Before you see someone for legal or financial advice it is important to work out what you need (goals and plans) as much as possible. If you have a plan already, it is easier to access advice that is relevant to your situation. The clearer your vision, the easier it is to plan and to stick with the plan. There will be many challenges to fulfilling the plan, including responses from people and organisations that aim to discourage you. Having your family and others outside your family supporting your vision will help you to maintain your direction. Once a plan is well developed it can be updated regularly to reflect the changing needs of your family member with disability.
Here are some ideas for the kinds of things you may want to consider as a starting point. Be explicit when thinking through this checklist. It may not be possible for all the goals you identify to be achieved, but do not allow this to stop you planning and working towards a positive outcome for the future.
- What are the hopes and dreams of the person with disability and your hopes and dreams for them?
- How does the person currently communicate their needs?
- What accommodation will satisfy the needs and desires of the person?
- What is important to maintain their valued social relationships and interactions and what do they desire for the future in terms of relationships?
- What activities do they enjoy at present or desire for the future?
- What are their likes and dislikes (be specific and include food, music, environment, people)?
- What are their learning and educational needs?
- How can we, or others, support the person to achieve their hopes and dreams?
A copy of this checklist for you to complete is available in Section 6.
The most difficult part of the process is turning the hopes and wishes of the person with disability and your hopes and wishes into a clear and concise plan.
If this is your first attempt at planning, you will need to continue to work through the ideas for your plan and adapt them over time.
If you have already established a plan, this booklet and the issues raised may be useful to help you review, update and refine your plan.
Once you have taken the planning as far as you think you can, consider whether you might like some further advice from a lawyer or financial adviser on how it may work.
This is a summary of some things to keep in mind when working out how to provide for your family member. Many of these issues are covered in greater detail further on in this booklet.
- Keep the family member with disability the central focus of the vision and planning, and involve them in the process as much as possible.
- Include other people in talking through the vision and the plan. These others will ideally include siblings, other family members including extended family who are close to the person with disability and others who provide support and care to the person with high support needs.
- Look at the steps needed to achieve the vision – these steps make up your plan.
- Gather information and advice to assist you in your planning.
- Create a plan that includes all the steps to achieve the outcomes you have identified – developing a plan allows you to have more control over what is going to happen in the future.
- Take a ‘whole of life’ approach when developing a plan. This is not just about how a person will be provided for financially but about how they can fulfil their hopes and dreams and have a lifestyle that reflects these.
- Take one step at a time as building solid foundations will create a more sustainable future for the person with disability.
- Talk to others in your community or network and consider setting up a ‘support circle’ or ‘personal network’, with the purpose of safeguarding your family member and your vision in the long term.
- Before you see someone for legal or financial advice it is important to work out what it is you need (goals and plans) as much as possible.
- Remain flexible to challenges and change.
- Develop a ‘wish list’ to assist others in making decisions on behalf of your family member with disability.
Planning Process
