Frequently Asked Questions

Please note we are currently developing this section of the website. Please check back soon for further information.

The Challenging Behaviour Foundation receives over 1000 enquiries a year from family carers who have a relative with severe learning disabilities and behaviour described as challenging.

We recognise the important role family carers play in supporting their loved ones and provide information and support to families of children and adults.

"Families are usually the main source of love, care and support for children and adults with learning disabilities. This is especially the case for people with complex needs. Even when people leave home, they do not leave the family. Families continue to offer a lifetime of involvement, support and advocacy." Valuing People Now (2009)

There are some questions which are frequently asked and here we have provided answers to these with links to further information. If you have unanswered questions after reading this information please contact us for individual support. 

Making decisions

Q: “I’m concerned that professionals are going to make decisions for my son/ daughter without consulting me. What can I do?”

A: All professionals, including those from local authorities and the NHS must consult with family members when an adult lacks the mental capacity to make the relevant decision themselves. The law is clear on this – family members have a right to be consulted.

The law (Mental Capacity Act 2005) says that if a person (aged 16 or over) lacks the capacity to make a particular decision, a decision must be made in the person’s ‘best interests’. Your son/ daughter should be supported to input to the decision as much as possible. You must be asked what you believe would be in your son/daughter’s best interests and about what they might feel about the decision themselves.

If you have a concern that professionals are going to make a decision on behalf of your son or daughter without involving you, you can contact the professional who will make the decision and ask them to involve you. A template letter has been produced by the Challenging Behaviour Foundation  in collaboration with Mencap, Ambitious about Autism and Irwin Mitchell Solicitors for family carers to send to a professional they believe is not likely to involve them in a best interests decision. The letter asks the decision maker to consult you and your son/ daughter in decisions and clearly sets out the legal requirements to involve you both in the decision. To download the letter and a short leaflet explaining how the letter should be used, click here.

Further information about the Mental Capacity Act can be found in “Using the Mental Capacity Act: A resource for families and friends of people with learning disabilities” by Hft or “Making decisions: A guide for family, friends and other unpaid carers” by the Office of the Public Guardian.

Q: “Professionals have made decisions for my son/ daughter without consulting me. What can I do?”

A: We are regularly contacted by family carers who feel that they are not being appropriately consulted about the welfare of their loved one.

The Mental Capacity Act (2005) requires all professionals, including those from local authorities and the NHS, to consult with family members when an adult (aged 16 or over) lacks the mental capacity to make the relevant decision themselves.

If a professional has made a decision on behalf of your son/ daughter they should have consulted you and anyone else interested in their welfare before deciding what is in their “best interests”. Your son/ daughter should have been supported to input to the decision as much as possible.

If you feel excluded from decision making by a professional who has made a decision on behalf of your son or daughter, you can contact the professional who made the decision and ask them to arrange a best interests meeting to address the issue. A template letter has been produced by the CBF in collaboration with Mencap, Ambitious about Autism and Irwin Mitchell Solicitors for family carers to send to that professional. The letter clearly sets out the legal requirements to involve you and your son/ daughter in decisions. Click here to view the letter and a leaflet explaining how it should be used.

The first step is always to try and resolve the dispute with the person making the decision. If there is no response to a letter based on template above, or if agreement about an individuals’ best interests cannot be reached, it may be necessary to challenge the decision by making a formal complaint or ultimately, seeking some legal advice and resolving the dispute in the Court of Protection. More information about this can be found in “Using the Mental Capacity Act: A resource for families and friends of people with learning disabilities” by hft or “Making decisions: A guide for family, friends and other unpaid carers” by the Office of the Public Guardian.