You are not alone. Many adult siblings juggle multiple responsibilities, feel isolated and need support in their sibling role. Use these pages to get information on sibling issues, and to make contact with other adult siblings in the UK.
If you have a disabled adult brother or sister who is currently dependent on your parents for many of their needs, the big question is 'Who is going to do the caring when my parents are no longer able to to?' This is a bigger issue for many of today's adult siblings than it was in the past; disabled people are now more likely to outlive their parents, Care in the Community means that most disabled people will have been living at home with their parents, and there is a current scarcity of appropriate housing and care options.
The best time to make a plan is when everyone is in good health and when things are going well. This is not how it happens for most people - it tends to happen when there has been a crisis such as the death or serious illness of a parent, when a parent is struggling to cope, or some other event that affects current care.
It is very hard to make good decisions about future care during a bereavement and decisions made at a time of stress may not turn out to be the best in the long run for either the sibling or their disabled brother or sister.
It is likely that you are the person who has to initiate a meeting to plan for the future. It may have been on your mind for some time and it may be hard to get your parent to talk about the future.
Include all the relevant family members. If there are other siblings in the family, the responsibility should not be yours alone.
Enable your brother or sister with learning difficulties to participate as much as possible even though he or she may not have any understanding of 'future' and may not be able to make a realistic contribution to the planning.
We recommend having an external person to facilitate the planning meeting - a family friend, a social worker, a community learning disability nurse or counsellor - someone who can chair a meeting well and knows your family; this means that everyone can have their say and that someone is there to keep the discussions on track.
You will need to allow lots of time for you and your family to come up with ideas, particulary around accommodation and care. Think of all the possibilities and don't reject any until you have given consideration to all pros and cons. The situation facing most families often appears to be a stark choice between being cared for by a family member or being in a large care home. This may have been the choice your parents were given when your brother or sister was born and they may now feel that they have no choice but to care for their son or daughter at home until it is no longer possible.
A discussion can be forgotten or misunderstood, and not given as much serious consideration as when it is going to be on paper.
Write down what you want to happen and have long and short term goals for these.
For example
Long term goal: For Alex to live in a small group home with a few other men with learning difficulties
Short term goal: Richard to find out by the end of the month about the type of group homes that are available
Make it clear who is responsible and when they need to take action by.
Make sure everyone involved gets a written copy of the plan
Set a date to review the plan - make sure to do this at least every 2 years, unless circumstances change and you need to review it earlier.
Help your parent compile a folder of all the current information about your brother or sister that a new carer would need to have, including all the contact numbers for the relevant professionals and services.
Housing Options is a housing advisory service for people with learning disabilities, their families and their supporters
www.housingoptions.org.uk
Key Housing is a leading provider of supported accommodation for people with learning disabilities in Scotland as well as providing support for people to live in their own homes.
www.keyhousing.org
Mencap has up to date information on making wills and trusts in order to make sure that money will be available for a person with a learning disability. Read their section
Wills and trusts: leaving money to someone with a learning disability
www.mencap.org.uk They also run regular regional workshops on making wills and trusts. Contact Mencap for current dates and venues on 020 7454 0454.