Feedback from the National Forum 7 th & 8 th September 2011

New way of working This was our second meeting working in a new way. We met from Wednesday afternoon to Thursday afternoon. We had one main topic for the meeting Living our Lives in the Community Now. People were still happy to work in this way everyone said they had a chance to say what they wanted.

Living our lives in the Community Now There is a “Big Squeeze” on everyone across the country. “Everything is changing in people’s lives and its hard to understand why things are happening.” “We are still not living a life”. “A social worker came out and reviewed the help I get. I lost all my 4 hours and got an alarm call system instead!”

Living our lives in the Community Now These are the main messages from the Forum; 1.Personal Budgets people are still unclear about them, including some social workers. People feel personalisation had ‘stopped’ in their areas. 2.Bullying due to the loss of support people are more likely to be victims of crime. 3.Health and Well Being people have lost help which supports them to maintain relationships in their communities. 4.Mate Crime. “A bolt on the door doesn’t stop Mate Crime”. Less community police and street wardens, people feel unsafe walking the streets.

Complex needs Christian Raphael came to the meeting with his supporter’s and Vicky his mum. Christian showed from his presentation that people with high support needs can be supported to live in the community. Christians report highlighted the issues experienced by people with high support needs. Accessing public transport, lack of changing places toilets, lack of meaningful day opportunities, being allowed to take risks and changes to disability living allowance. We hope Christian can continue to work with us.

Updates Siraaj told us about his work on the advisory group for Health Watch. Siraaj has been successful in getting the minutes in easy read. Amanda gave an update on the Employment work she is doing. She is currently working with Access to Work. Janet told us about the TASC group.

Although there was no official meeting in July. Gavin did attend a meeting with members. They discussed how the cuts in Social Care Budgets would affect people with learning disabilities. Gavin also talked about work that is being done to improve issues around mental health.

Staying Strong Guide - follow up work Over 100 groups have answered questions about how they have used the guide from the 9 regions. One of the main issues for groups is funding. Many groups are getting the same money as the year before. They do not know about their funding after March Groups are frightened that all the good work that has been done will be lost.

What’s happening with money at the moment? Because there is no longer a Government led Learning Disability programme; we are being told to think “local” The work that groups do Pay us for the things that we can do and we will get people off benefits and into meaningful employment that will help and support other people.

Where does self advocacy group money come from? Local Authorities and Councils are the main funders. Some get money from other ways. Some groups earn some of their income from their work. How much money will groups get this year 2011? Most groups are getting the same money. Some groups are getting less money and this will make a difference to the way they work.

What money will groups get after 2011? Most groups do not know what will happen. Local authorities are making lots of cuts over the next 2 to 3 years and groups think this will include their money. How are groups managing with less money? Not doing some pieces of work. Making cuts in staff. Working with other groups.

What sort of work are groups doing? Self advocacy work, peer advocacy and friendship groups. Working on Valuing People Now and Partnership Board work. Keeping safe, quality checking and training. Making information easier to read. New ways of working Getting more business like, working with other organisations and more time on fundraising.

The role of Partnership Boards No one knows what the ‘localism agenda’ means. Some partnership boards have been changed. Using the Staying Strong Guide Most groups were pleased about the Staying Strong Guide. Groups found it useful for different ideas and making future plans.

Other things we would like help with and want to say It is important groups meet up and share information. Groups are still finding pieces of work that they want to do. Groups are worried about people losing support and being more at risk as a result of the cuts. What’s next for self advocacy groups? We are meant to be about PEOPLE first, not about MONEY. We want to support each other to do work WE want. We are committed to Staying Strong- but for HOW LONG.

National Forum Meeting 7 th & 8 th December Housing was the main topic for this meeting. Alicia wood from Housing options came to talk to us. She gave a presentation on the Top Tips for Local Leaders on Housing. Each region gave an update from the forum meetings on housing. These are the main issues.

Support - people need good support to help them be successful in their homes. Lots of people are having their support cut this means things will go wrong. Information - there is not enough easy read information on housing. People have trouble filling in forms. To apply for housing you need to bid on the internet this is confusing. Some people don’t have access to the internet. People need support with this. Choice - there is not enough choice around where to live. We do not always want to live with other people. We do not have enough control and choice over who will support and work with us.

Being safe - people do not always feel safe where they live. People with learning disabilities are often easy targets. Hate and Mate Crime are still big issues. Benefits - with all the cuts and changes, people are worried about benefits and whether there will be cuts to housing benefit. Although there have been good things happening over the past 10 years and lots of people are happy with their housing, there is now lots of change and people are loosing services because of cuts. People are worried about the future.