LB Bill: Certitude’s response and approach

LDOver the past year, Certitude has been working to raise awareness following the preventable death of Connor Sparrowhawk, also known as Laughing Boy (LB), a young healthy man who also happened to have autism and epilepsy. He died following a seizure he had in a bath during his stay in an assessment and treatment unit.

Staff working directly with people with epilepsy, as well as parents of people with epilepsy, participated in a roundtable discussion in the summer to address how best to support people with epilepsy, balancing both safety and independence. There was a real dedication by those involved to take active steps towards their own personal commitments to better support people in our care.

Connor’s family and supporters have now started a campaign for a new bill, known as the LB Bill, to make it a legal reality for people with disabilities to be fully included in their communities, and to make it harder for the State to force people with disabilities to leave their homes against their wishes, or the wishes of their families.

The new consultation green paper ‘No voice unheard, no right ignored – a consultation for people with learning disabilities, autism and mental health conditions’ has largely come about as a result of the LB campaign. The key points include people being in charge of their care, supported by families and friends, people’s inclusion and independence in the community, the right care in the right place, and clear accountability and responsibility throughout the system. The consultation runs until 29 May and Certitude will be contributing to this consultation through a number of forums and supporting people to feedback.

Certitude firmly believes in working together with people with disabilities and their families as partners, to ensure they have the best possible support when and where they need it. Supporting people to become active participants in their communities, and building strong relationships with families to co-deliver and co-evaluate the services we offer so that we provide the best quality support.

We are absolutely committed to enabling people to live in their community, and are against any action which forces or coerces people against their will to move into residential care or an assessment and treatment unit. We have invested in person-centred thinking for a number of years and have more recently introduced an Intensive Support Team  to enable people, especially those with profound and multiple learning disabilities, autism and individuals who are labelled as challenging, to be able to express what represents a good life to them and get the support they need to achieve it.

As an organisation, we have signed up to the Bill and have committed to the following pledge:

“Certitude supports the aims of the LB Bill, to promote a person with a disability’s right to live in their community and to make it harder for the state to force people with disabilities into residential care or treatment. We firmly believe in working together with people with disabilities and their families as partners, to ensure they have the best possible support when and where they need it. We are committed to doing what we can to support the ideas in the LB Bill to become law”

We are working closely with people we support and their families to actively ensure their voices are heard and they are able to comment and actively feedback their views.