What’s in a label? Why do we lose our choices when we are labelled as having health needs...

Who are we? A Parent A Consultant Nurse A Partnership Board Co-Chair A Friend

Meghann and Jenna’s Story

Meghann is 20 years old and needs to leave home. Meghann has Continuing Health Care funding, so it is illegal to make a direct payment to her. Meghann’s family and circle of support started looked into what was available but all they were offered was a 60+ bed residential campus 72 miles away from the family home, Meghann’s friends and community. Her family and circle of support said NO!!!

Meghann has lived in the same community her whole life. Meghann is known and welcomed into her community. This is where her family wanted her to be in the future. Meghann and her family know so many people in their community so there were people they knew who liked spending time with Meghann and had lots of experience and expertise around supporting her over the years. Meghann’s family wanted to be able to use these people to support Meghann in her own home.

Meghann’s family and circle of support felt they were the experts on Meghann and the best people to recruit and manage a team for her. They wanted to be involved in choosing, managing and supervising staff. This isn’t possible because Meghann can not get a Direct Payment with health money.

Although health were able to pay for residential care, the health money could not be used to pay for accommodation in ‘supported living’. This has meant that Meghann has had to rent privately and uses housing benefit to pay the rent. This does not offer the ‘supported living’ she wanted and the security she would get from a social landlord. So what do we do instead?

The next best thing… We found a provider nearby who understood circles of support. Meghann, and the circle have been involved in the recruitment and staff are being trained and mentored by circle members. Everyone feels involved. The solution feels fragile and is only as good as the local manager on the ground. Now that manager is moving on, will who replaces them understand? If Meghann and her circle held her budget this fear would not exist.

We can form circles of support

We can have fantastic person centred plans

We can have limitless aspirations We can develop imaginative support plans

But we can’t live them... With out being given control of the money

How are you all getting on with your puzzles?