The National Forum Meeting

1. The National Forum Meeting 3 to 4 December 2013

2. Feedback and Updates Winterbourne View Concordat: Karen and Craig • Presentation given to Norman Lamb on 4 November. • Questions were asked by Forum members about the Assessment and Treatment units discharge programme.

3. Regional Updates Yorksand Humber: • Regional Forum on 26 November. • People talked about benefits, being safe and advocacy. • A DWP representative talked about benefits.

4. Regional Updates North East: • Big event held on the support commissioned for people. • People need better support – lots more choice and control over the staff who support them, where they live and who they live with. • There were lots of ideas for how to do this.

5. Regional Updates North West: • Involvement of people with learning disabilities in interviewing and choosing new staff and support. • Awareness raising for bus drivers. • ‘Quality of Health Principles’ Find and add link written by 650 people with learning disabilities will be launched in Feb 2104. The Regional Forum’s logo is on it. We would like to use the National Forum logo too. • The North West is not happy with the way the National Forum is being run. We do not think our voices are being heard. East Midlands: • Presented to the National Forum

6. Regional Updates West Midlands: • Regional Forum on 7 November. • People talked about advocacy. They said: • There is not enough funding to do the work. • Commissioners do not understand what advocacy is. • We need to prove that it is the only thing that gives people the power to change their lives. • Groups need very good support to run well. • Groups need to train supporters to make sure every group is controlled by people with learning disabilities. London: • The London Forum helped London advocacy groups from different boroughs to give feedback to their boroughs’ Joint Self Assessment Frameworks. • London believes the National Forum could do more campaigning work on important issues like benefits. • London advocacy groups are struggling with their funding.

7. Regional Updates London: • The London Forum helped London advocacy groups from different boroughs to give feedback to their boroughs’ Joint Self Assessment Frameworks. • London believes the National Forum could do more campaigning work on important issues like benefits. • London advocacy groups are struggling with their funding.

8. Regional Updates South East: • Mid Sussex Thumbs Up pledge – 10 things people with learning disabilities have said helps them with services. • Shops and other services to get DVD to help staff work with people with learning disabilities. They can put a ‘thumbs up’ sign in their window, then people with learning disabilities know they will get a good service. • People are worried about benefits and transport.

9. Summary of actions from Day 1 • In future minutes are to be sent to Co-chairs to check them before they get sent out. This is because not everyone was happy with the September minutes. • Forum members to be given as much notice as possible for meetings they are invited to. MPs and Ministers often do not invite reps until just 2 days before meetings.

10. Summary of actions from Day 1 • Inclusion North has done work on Self Advocacy. It was agreed that this information should be shared and linked with the National Forum. More information needs to be found out about this for the next meeting. • Information needs sharing on people’s right to advocacy through the new care bill. This information to be shared and discussed at the next meeting. Helen confirmed the right to advocacy is in the new Care Bill.

11. World Café - Campaigning Group 1: Campaign on Self Advocacy (SA): • Need core funding – more time and money to run proper SA groups. • SA groups are needed now more than ever because of all the issues, so more funding is needed. • Commissioners do not understand what SA is about – people at the top of Valuing People did understand. • There are SA groups around but they don’t have time to advertise because they are doing so much work for councils.

12. World Café - Campaigning What we need to do: • Find out how many SA groups have closed down because there is pressure on those that are left. • Educate commissioners about what SA is and how important it is. • Revisit “Staying Strong” on National Forum website. • Publicise work of SA groups. Use Twitter. • Read “Talking about Advocacy” document by the Ideas Collective which gives a structure for groups to help them move forward.

13. World Café - Campaigning • Make sure they understand different types of advocacy and what groups do. They need to understand what the local issues are and support people with learning disabilities to tackle them. • Lobby government about going back to Valuing People principles. • Find evidence of gaps in services and how they are affecting people. • Invite commissioners to SA groups and regional forums. • Make a BIG NOISE.

14. World Café - Campaigning • Make sure every SA group has good support. We can make training materials, so all SA groups can train their supporters. Training will be designed by people with learning disabilities and available on the internet.

15. World Café - Campaigning The results we want: • SA groups to STAY STRONG. • “Nothing about us without us.” • Better communication between regions.

16. World Café - Campaigning Group 2: Campaign on Benefits Issues: • Where can people get help? • How to get employment – voluntary work / college courses. • Very worried and confused. • Advisors not experienced. • No clear and Easy Read information. • Need support at assessments! • Lots of people don’t have computers. • Benefits agency staff are not helpful.

17. World Café - Campaigning • Change in payment dates – need help with bills. • Help filling in forms. • People don’t understand new benefits. • People are losing their benefits – about £100 every 4 weeks. • People are losing their independence. • They lose social contacts and friends. • Lost off the ‘system’. • Transport – if you can travel independently, you can work!

18. World Café - Campaigning Group 2: Campaign on Benefits What we need to do • Work with DWP to make sure there is accessible information: Subgroup to work with DWP to make sure they understand what issues are. • Develop training for advisors and benefits agency staff – SA groups could do this, there needs to be money for this. Subgroup could help develop package of training (for example - on autism).

19. World Café - Campaigning Group 3: Campaign on Hate and Mate Crime Issues: • Police are not taking reports seriously enough. • Training is needed to pick up signs that people need support. • Lack of statistics. • Not enough of a police presence. • Not enough in the media.

20. World Café - Campaigning Group 3: Campaign on Hate and Mate Crime Issues: • Cuts in benefits/increased poverty makes things worse. • Bad attitudes in schools and colleges. • Mate crime.

21. World Café - Campaigning What we need to do: • Talk to Programme Board? Include police on it. • Talk to politicians (show evidence, like videos). • Talk to police commissioners. • More of a media profile. • Training for police and transport providers. • Central website resource. • Training in schools and colleges (staff and pupils).

22. World Café - Campaigning What we need to do: • Make an easier way of collecting evidence. • “Keep safe” cards. • Promote restorative justice.

23. Question and Answers We had a question and answer session with Paul and Colleen from VoiceAbility.

24. South East: • We have a diagram for how the National Forum should work. Information should start from the bottom and work to the top, which it does: • But when it gets to the top nobody knows what the outcomes of any issues are, as they do not come back down again. So there is a lack of communication coming from the top.

25. Summary of Actions from Day 2: • Karen F and VoiceAbility to send letter to Clare Crawford’s employer to apologise for changing the meeting date at short notice. • Paul to be invited to the next meeting to discuss the new internetproject he would like to start called Speak Out Online. • Co-chairs to be involved in every aspect of recruiting new coordinator and admin person (from planning to interviewing). • Reps and Chairs to vote on changes that are needed.

26. Summary of Actions from Day 2: • A new health rep is needed. Anyone interested should contact the Chairs. Helen to send information to the group about the role. • Reps were disappointed that there was no National Forum stand at the Learning Disability Today event this year. Chairs to apply to attend next year early on in the registration process.

27. Any other Business: Colleen asked reps to vote on how many meetings they would like per year, the following was how people voted: • 4 meetings a year - 4 votes • 3 meetings a year - 7 votes (Eastern rep voted after the meeting) • 2 meetings a year - 0 votes. ACTION: Chairs to tell the Dept of Health that they would like three 2 day meetings a year with one 1 day meeting a year.

28. Final Questions Thank you for listening. • Do you have any questions? • What would you like me to say to the National Forum?