Including your sibling child in meetings and planning
Family conversations, appointments and home visits are often focused on the needs of the child who is disabled or has additional needs. As a result, siblings can feel left out and not included. You can help siblings feel included by involving them in meetings and planning.
Why it’s important to include siblings
Improves understanding
It helps siblings to understand more about why their brother or sister needs extra attention and help. For example, a sibling can learn a lot by being included in a hospital appointment or having things explained by a consultant.
Reduces jealousy
It helps to reduce jealousy if siblings are included in some way in their brother or sister’s treatments or therapies. For example, a sibling won’t feel left out if invited to join in a clinic visit.
Having a say in things
It helps siblings feel included if they have a say in what will help them at difficult times. For example, making plans with a sibling for coping when their brother or sister has to stay in hospital.
‘We talked to her about her sister’s check up appointment. She wanted to meet the consultant and he and the nurse made a real fuss of her… She needed to be involved in something to do with her sister’s condition, we’ve had no outbursts since.’
How to include siblings
Getting to know professionals
Explain the role of professionals and carers involved in the care and support of their brother or sister. Ask older siblings if they would like to meet these professionals so that they can ask questions about the help they give. Help younger siblings make a poster with the names of each professionals and pictures of the jobs they do.
Involve siblings in therapy
Pre-school siblings love to be involved in therapy and treatment and often see this as a fun activity that they are missing out on. Ask practitioners to allow your young sibling child take part in some of the session, or try out the equipment.
Include siblings in meetings
Ask professionals to make some of their home visits when your sibling child is back from school. Include older teenage and adult siblings in practitioners’ meetings and reviews about their brother or sister. Where appropriate, ask siblings if they would like to speak on behalf of their brother or sister. Also, ask siblings their views and ideas on how things could be improved for their family.
Plan together with siblings
Make a plan together for hospital stays. Planning ahead with siblings helps them to know what will happen and when. For example, whom they will stay with, when they will see you and when they can visit their brother or sister.
Talking about the future
As a parent one of the hardest things to think about is what is going to happen in the future. This is particularly the case if your child who is disabled or has additional needs requires a lot of support and care from others. Siblings from the teenage years onwards, begin wondering who will support their brother or sister if their parents are not able to. You can support your sibling child by talking about the future and by making plans for what will happen.
- Start talking about the future from when your sibling child goes to secondary school, or earlier if they ask about it.
- Tell siblings about the type of support that is available for young people and adults who are disabled to help them lead ordinary lives – work and leisure opportunities, care and support from paid carers, being able to live in their own home…
- Let siblings know that they have choice about how much they want to be involved in supporting their brother or sister in the future.
- Let siblings know that it will be OK for them to live away from home to work, go to university, or to travel.
- Young siblings often tell parents that they will look after their brother or sister in the future. Let them know that this is a decision to make as an adult and that it will be OK for them to change their mind about this when they are older.
Future planning
- Make a draft plan together as a family with everyone involved. Talk about where your young person who is disabled or has additional needs will live, what work or activities they may be doing, and who will be supporting them. Write it down and review it once a year. Siblings worry less about the future when they know that parents have made a plan – even if it is not perfect.
- Encourage your young person who is disabled or has additional needs to become more independent each year, with some of their care and support coming from people who are not family. This will help siblings and their brothers and sisters who are disabled or who have additional needs gain experience of care and support being provided by others.
- Involve teenage and young adult siblings in discussions with professionals about care and support in the future.
- Inform young adult siblings about things such as mental capacity, adult social care assessments, and personal budgets.