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Thinking Ahead: Planning Guide for Families

Thinking Ahead: A Planning Guide for Families

This course has been developed based on the "Thinking ahead: A planning guide for families" guide by the Foundation for People with Learning Disabilities. The guide itself was produced in response to what people with learning disabilities, their parents and siblings have been asking for years: what is going to happen in the future, and how can we shape it?

The title ‘Thinking Ahead’ is centreed around planning for the future is the best solution to the problem – talking about it as much as possible and putting as much in place as you can whilst you have the energy and time.

The course offers ideas for how different people can help parents, and contribute to thinking and planning for the future. Parents usually need support to think ahead. Siblings and other close relatives as well as friends and neighbours bring a helpful perspective. People with learning disabilities need support to shape their future and be central to any planning. People working in local authorities and voluntary organisations have a role to play in supporting families through discussions, providing information and supporting change.

In summary, planning for the future is the responsibility of all of us. Parents have often said their hope for the future is that they will outlive their adult son or daughter, but as people with learning disabilities are living longer, this is frequently not the case. But in any event, living with fear and worry for the future shouldn’t be the way for a family to live. Planning will help put things in place to ensure that the person with learning disabilities has the best adulthood possible, even after the death of a parent. 

There are nine sections that look at different aspects of thinking about and preparing for the future: The sections are:

  1. Making decisions: information to help you understand the legislation and practice that relates to decision-making.
  2. Making plans for the future in a person-centered way: an introduction to how person-centered planning can help you to think about what options might work well for your relative.
  3. Building friendships and support networks: describes the benefits of having more people involved in your relative’s life and ideas for achieving this.
  4. Talking about difficult subjects: ideas about how to talk about subjects that can be difficult to raise, such as growing older and death and dying, with your relative.
  5. Making financial plans: an introduction to making a will, setting up a discretionary trust and power of attorney.
  6. Housing and support: information about the different housing options for your relative and how to get the support they need.
  7. Making a plan for emergencies: how to put together a plan that can support your relative to get the right support should you suddenly have an emergency.
  8. Keeping an eye on things: how to ensure your relative has a good life and is well supported when they leave the family home.
  9. Making a plan for the future: drawing together your ideas to make a plan for the future.

The aim of this course is to;

  • Encourage conversations within families about what the future might be like
  • Give families the information they need to look at the options that can be considered
  • Give families the confidence to make plans and put things in place to improve the future, including planning where to live and how to be supported
  • Prevent people with learning disabilities from worrying about their future and perhaps experiencing trauma when something happens to their parents or their main family carer
  • Reduce the worry and anxiety that family carers feel when they think about the future
  • Give siblings the tools to encourage their parents to plan for the future (if they are reluctant) and to contribute to future thinking and planning. 

This course is designed for families with an adult relative with learning disabilities who would like ideas to help them think about and plan for the future. By families we mean parents, their son or daughter with a learning disability and also siblings and other close relatives and friends. It could also be used by people outside the family who want to offer support.

Families may be at different stages of planning for the future:

  • Some may be in an emergency situation and urgently need to look at options.
  • Others may be needing or wanting to make changes in the near future and actively looking at places to live and how best to sort out good support.
  • Others may be ‘dipping a toe in the water’ to gather initial bits of information but not at the point of making changes to their current situation. Planning for the future is often seen as planning to leave home, but it doesn’t always have to mean that.

This guide offers families ideas for taking small steps in planning with their relative for times ahead even if leaving home is probably a number of years away. 

The course can also be useful to families if their relative has already left home but they still want to put other plans in place to make sure their future life is as good as possible. Planning for the future is often focused on older families, but younger families have told us they want support to think ahead so that they don’t have to make rushed decisions later on.

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