Our Marie speaks to MPs about ‘What matters’ to young people with PMLD

Marie Baker, manager of our Parent Groups & Befriending service, spoke at the House of Commons last week. Marie was there as part of the What Matters to Me project, launched by the Challenging Behaviour Foundation.

What Matters to Me aims to show it is possible to find out the views and preferences of young people with limited or no verbal communication. The project hopes to use these young people’s views to drive change, particularly around the transition from child to adult services. The event was hosted by Kevin McKenna, MP for Sittingbourne and Sheppey in Kent.

The three year project involved individual and group activities at Ifield School in Gravesend and Demelza in Sittingbourne. Project leaders took a creative approach to engaging directly with 11 young people with severe or profound and multiple learning disabilities and their families. One of these young people was Marie’s daughter, Aimee.

Marie explains:

“I found out about What Matters to Me through Aimee’s Demelza Hospice transitions navigator. I wanted to get involved because I felt a bit lost in the world of transition. No one seemed to be hearing what Aimee wanted. Aimee is non-verbal and has a profound learning disability, so it’s always been hard for her views to be heard. This felt like a project that would centre on her, instead of the focus being on us as her parent carers. We got involved in lots of engagement events and activities, culminating in a multimedia manifesto launch at the House of Commons.

Marie was invited to speak at the launch event, sharing her experiences of caring for Aimee and working to understand Aimee’s needs.

“It was an honour to speak at the event and see the positive reactions in the room from MPs, young people, parent carers and professionals from health, social care, education and the charity sector. This is just the first step. I’m excited to see how the manifesto progresses and difference that our young people can make.

Read a transcript of Marie’s What Matters to Me speech

Jacqui Shurlock, CEO of the Challenging Behaviour Foundation, said:

“People with severe or profound and multiple learning disabilities have the same rights as everyone else to share what is important to and for them. Yet they are so rarely included in consultation or participation activities.

We hope that What Matters to Me encourages everyone whose work impacts on the lives of people with severe or profound and multiple learning disabilities to reflect on what more they can do to find out what matters and to use what matters to drive change.”

Find out more about What Matters to Me on the Challenging Behaviour Foundation website

Support from Amaze

If your child or young person has severe or profound and multiple learning disabilities, Amaze can support you. Our ND Family Support Service works with families with children and young people with learning disabilities. We also have support groups for parents of children and young people with complex needs in Eastbourne and Brighton & Hove. Your young person may be able to attend one of our Amazing Futures groups.