Inclusion doesn’t just happen. Sadly, it is often necessary to take action to bring about the rights of disabled children and families struggle and are left unhappy with services from social care, health and education. 8 out of 10 families with severely disabled children surveyed by Mencap described themselves as ‘at breaking point’. (Breaking Point – families still need a break, Mencap, 2006). So here we are going to give a few ideas of how families, or friends and supporters, can campaign to get your rights.

If you want to change health services in your area then you can contact your local Health Board. If you are unhappy with the service that a child receives, the NHS has a procedure for complaints. It begins with raising the issue with the service. They should respond with a ‘local resolution’, where they seek to provide prompt investigation and resolution of a complaint at local level, aiming to satisfy the person making the complaint whilst being fair to staff. This stage should, normally, be completed within 20 working days of receipt of a complaint.

If you are not happy with the result the next stage is to ask the Scottish Public Services Ombudsman, who is independent of Ministers and the NHS, to review the case.

It is possible that things might improve for you and even for other families because local clinical governance arrangements must include procedures for ensuring that information gained from patient feedback, including complaints, is used to improve service quality.

Your local authority or local council is responsible for providing services in your area such as education, local leisure facilities, etc and makes decisions on local short breaks, transition services, local education facilities, transport, housing, roads and pavements, parks and playgrounds, crime, entitlements to DLA, carers allowance, etc.

To find out which local authority you live in go to http://local.direct.gov.uk/ldgredirect/start.do?mode=1

If you feel that you are not receiving the appropriate services you should request an up to date assessment of your childs needs. This will determine what services your child is eligible for, and will answer any questions you may have about access to current services. If you feel that your local authority is not meeting its duties, the first steps to a formal complaint are;

Write to the council – highlighting that you are making a formal complaint and outlining all the issues you have faced. Most councils have an office for complaints which you can find on their website, or write to the head of the council. When making the formal complaint, copy the letter tothe Director of Children’s Services and the Lead Councillor for Children into your email/letter.

Local Councillors are elected by the local community to represent its views and are your voice in the council and can raise your concerns about issues. To find your local councillors go to http://www.writetothem.com

Your MP is your representative in Parliament in the House of Commons in London (which passes UK wide laws) and your MSP represents you in the Scottish Parliament, (which deals with education, health etc) but they can also take up issues with local councils and Health Boards. You can find out who they are also at http://www.writetothem.com

With thanks to ‘Making Disabled Children Matter Locally 2010’, EDCM Aug 2010