When your relative has severe learning disabilities and displays challenging behaviour, their needs will be more complex so it is a good idea to plan ahead.
Who will be responsible for your relative’s welfare and ensure they are well supported after you die?
Death, illness and bereavement are something we will all unfortunately experience. It is distressing for everyone, and not something anyone likes to dwell on too much in advance. However, when you are a carer of someone with a severe learning disability, you may have extra worries about what will happen after your death. This information has been written to help answer some important questions family carers may have. You may want to share this with other friends and family who will continue to be a part of your relative’s life.
Circles of support
One way to try to ensure there is continuity of support throughout your family member’s life is to set up a Circle of Support. Circles of Support are a network of people that are committed to supporting your relative and ensuring they have a good quality of life –and can continue to do so after parents / primary carers have passed away. Once a circle of support is set up, it is good to encourage members to visit the relative often – this will give the message to your relative (and those who may care for him) that there are always people around to ‘keep an eye on things’. You can read more about Circles of Support in our website page and on the charity Circles Network website.
If you are a Deputy for your relative, it may be helpful to think about who will take over this role if you are no longer able to do so. The court of protection will only appoint a new Deputy if:
- The person still needs a Deputy
- Someone applies to be the Deputy
The court can appoint a Panel Deputy or a local authority deputy if no one applies for the role. You can read more about Deputyship and how to apply to be a Deputy in our information sheet: Getting legal authority for property or welfare decisions.
A Social Worker or advocate can be very important for smaller or more isolated families, where there may not be other relatives who can take over the caring role. If there is already a social worker / advocate involved in your family member’s support who knows them well, they would automatically continue their role. You may want to discuss with them what their role will be in the future, and make sure they understand the plans and aspirations that person may have.
How can people with learning disabilities be supported with the distress of losing a family member?
Bereavement is hard for everyone; however it may be confusing for someone with learning disabilities who may not understand what has happened. When someone struggles to use and understand verbal communication, explaining an abstract concept such as ‘death’ can be very challenging.
There are several ways to help them prepare and understand death:
- Try to use opportunities to talk about death beforehand – for example, use the death of a pet / plant to explain the life cycle. Involving your relative in caring for and visiting ill family members may also help them to notice changes in health over time, which may stop death being such a sudden disappearance.
- Use clear but kind language – it’s important to note that euphemisms (e.g. ‘gone to sleep’) may comfort us can actually cause further confusion for someone with a learning disability.
- Use stories and images – Books Beyond Words have a number of picture stories that aim to support someone with the death of a father, mother, or someone else. These stories provide information in a way a person with a learning disability can understand fully, taking account of the way they view the world and what is happening. They can help people understand the sequence of events (e.g. after someone’s death there is a funeral) and therefore may help reduce anxiety about what is happening. For more information please go here: Books Beyond Words
- Create a memory book or board – this can be a nice way to help your relative remember the person after they have passed away.
There is a host of information online to support someone with a learning disability in their grief. Take a look at Easyhealth website for their resources on Dying and Grief and also the Foundation for People with Learning Disabilities information on Bereavement. Mencap have information on dealing with a bereavement, including resources in easy read.
It may also be helpful to seek support for your relative’s bereavement from the Community Learning Disability Team, who may be able to help or know what support is available locally.
If your family member lives at home and/or relies on you for support, what can you do to plan for the future?
There are many things to consider and plan for and it can be a daunting task. Researching and planning as much as possible in advance can give you peace of mind that your relative will be looked after. Make sure plans are written down and that several different people have copies or know where this is kept.
Person Centred Plans
All plans for the future can be written into a Person Centred Plan (PCP). A PCP should include a positive ‘vision’ of what life should look like for the person, focusing on their strengths, abilities and preferences, and what support will be required to achieve this vision. A PCP ensures that the person remains central to any decisions made about their life, including what happens after their parents or main carers are no longer able to support them.
Housing and support
If your family member lives in the family home or relies on you for some of their support, it would be helpful to include housing and support plans for the future in their PCP. This could include:
- Where your relative would like to live and where would meet their needs (this may be the family home)
- What kind of support will your relative need
- Who will provide this support
See Challenging Behaviour Foundation’s resources:
The PCP can be reviewed annually, and it’s important to make sure people who know your relative well have a copy and that social services have it on file.
Other plans you may want to think about are how your relative can be supported financially in the future. Plans that could be put in place include:
- Making a will
- Setting up a trust
Mencap have a Wills and Trusts service you can contact for advice.
Involving your relative in decisions
Your relative should have as much say as possible about decisions that will affect their future life. Under the Mental Capacity Act (2005) it should be assumed that everyone initially has the capacity to make these decisions. They should be supported as much as possible to weigh up the possible options and communicate their wishes. If they do not have the capacity to make these decisions then a decision must be made in their best interests – by consulting family members, professionals and others who know the person well. You can read more about this in HfT’s Mental Capacity Act guide.
As well as long term plans, you may want to make a plan for what will happen in an emergency e.g. if you go into hospital unexpectedly. Without a plan, it may be left to people who do not know your relative well to make decisions. It is therefore good to think ahead to prevent this.