Update on what we have done after people challenged our governance rules and values

Learning Disability England

Questions about our policy and actions on shared values and governance

An update on what we have done so far and will do next

10th October 2018

What this is about

A tribunal told the Care Management Group (CMG) that they could not change one of their services to have more people living there. You can read about that here 

Learning Disability England shared the information about the Tribunal decision on our social media and we put it in our newsletter because it is an important decision.

It was also important to tell our members because the Chief Executive of CMG, Peter Kinsey is a Trustee of LDE.

Some people on social media started asking questions about this and saying Peter Kinsey should not be a Trustee of LDE. You can read their questions here

Since then people on social media have asked more questions about

  • Why LDE has not suspended Peter whilst they decide about this
  • How LDE can be credible if it includes someone who runs a service like this
  • Why Peter has not stepped down if he supports LDE’s values
  • Why LDE is taking so long to act on these questions and decide

What Learning Disability England has done so far                        

We told people that we had heard the questions, shared what the questions were, and what we planned to do to deal with them. We put this on our website and in our newsletter, so all our members would know.

You can read that here

Two members contacted us after it had been in the newsletter

LDE started its work as an organisation by trying to make sure

  • Everyone gets a say and no voices are more important than others
  • Decisions are made based on agreement
  • People have good information to make decisions and a chance to think it through or debate it together
  • We work in ways that supports everyone’s involvement and make sure people have support if they need it

How we involved people

LDE has six paid members of staff. Four of those people work part time for LDE. We work flexibly to make sure the 3 disabled team members are well supported to do their work and those with caring responsibilities can balance home and work.

Everyone at LDE believes that it is very important to make sure that we decide things together. We want to make sure that every disabled person fully understands the issues we are working on and is properly supported to give their own opinion or decisions on issues.

We also believe in making employment work for disabled people who have the kind of conditions that some employers think are too hard to make reasonable adjustments for. This means our paid employees who are disabled all work part time, sometimes only for a few hours a week, when their health allows them to do so. Being considerate of other people’s needs and planning around them so that everyone can participate, is the first part of everything we do. We know this means we work more slowly than other organisations. We think that being properly inclusive is more important than being quick.

We have twenty volunteers on our current board and elected representative body. These volunteers live and work all over England. We do not have a central office for LDE. We use technology to keep in touch with each other and make it possible for people to work from home. This is good because it means we don’t have to pay for an office, but it means it can be difficult to arrange for everyone to be in one place at the same time to discuss important issues. It also means it can be difficult to make sure the support each disabled person needs are in the same place, at the same time as that disabled person.

Five people on our elected representative body have learning disabilities. Some have support in their day to day lives, some don’t. The issues our representative body are asked to understand and decide on can be very complex. We think that supporting people to properly understand these issues and to make their own decisions, so they can represent the other disabled people who elected them, is the most important part of our work. We know it takes a long time, especially as we don’t all work in one place, but we think it is more important to do it properly.

LDE’s rules say the Representative Body leads on policy decisions, but the Trustees hold the final legal responsibility. The rules say the board and the representative body should work together to make sure LDE is led by its members and does what it says it will. We realised that we did not have the policies or ways of working set up that made it clear what LDE should do in a situation like this.

It was also clear from what people said that people inside and outside LDE had different ideas on what LDE should do and who should be included, or not included in LDE. We realised these questions bring up some of the core issues LDE should be clear on as a membership organisation working with different groups of people and different kinds of members.

LDE is still working out what its aims and rules mean in practice and some of the people involved are still quite new. Because we are also trying to find a new way of working which enables disabled people to work as they need to, there isn’t an easy model for us to follow. We are not a disabled people’s organisation, or a user led organisation, so the models they use aren’t quite right for us and we don’t work like the large,  charities do. We have to work it out together as we are going along.

We decided we needed to try to think about this as two main issues.

One to make LDE’s policy and long-term ways of working on governance.

One to decide what LDE should do about the CMG Tribunal decision.

We decided that the Representative Body members would lead on these decisions.

A group of people said they would look at the policy in early September. Some others said they would meet with Peter in September too.

We knew that by working like this it would take us longer, but we decided that it could be considered a reasonable adjustment and fitted with our aims and values. That meant we thought it was better to work this way than some people decided alone or just the staff make the decisions.

What has happened so far

LDE’s policy and ways of working

Five members of the Representative Body met on 6th September. They talked about LDE’s rules and ways of working.

That group had some ideas for the policy. We shared those by email. Some people agreed with some of the ideas, but not all of them.

Before this meeting, we thought that people might all agree with the other people in their group, but that didn’t happen. People from each group have different ideas and agree with people from different groups. This means not all the self advocates agree with each other, not all the family members agree with each other, and not all the professionals agree with each other.

Some people from the Rep Body have not had their say yet as they could not get to that meeting or join in using technology.

We also need to include views from the family members who contacted us after reading our newsletter. The family members also had different ideas.

The policy will be talked about at a meeting on 15th October.

We hope that more people can be included that way.

Peter Kinsey being a Trustee

Everyone agreed that it is important to decide if Peter should be a trustee at LDE based on good information. People want to hear what Peter thinks and his answers to the questions people are asking about CMG and LDE.

On 27th September a rep met with Peter and a trustee was there to make notes. We had planned for at least two reps to go to the meeting, but some people could not make it. We decided that because things were taking time to sort out, and that people outside LDE didn’t understand why, that this time it was more important to meet than delay more.

What is happening next

The feedback on everyone’s ideas so far for the policy, the comments from members and on social media and notes from the meeting with Peter have all been shared with all the Representative Body members and the Trustees.

There is a meeting on 15th October which most reps will be at and this is the first thing they will make decisions on.

We will share the decisions the representative body make in October.

We will work out how all our members can have a say on LDE’s policies and ways of working on these questions and other important issues.

We know that by working this way it can seem frustrating to people outside LDE, and we are sorry for that.

We want LDE to be democratic and listen to members, but we also want to make sure that we work in a way that means disabled people, and particularly learning disabled people are fully involved in our decision making.

We are constantly working out how to make the best use of our time and live the values we hold.

We won’t always get it right, but we do hope people understand we are always trying to find the right balance between disabled people being fully included in decision making and acting fast enough on what matters to members and the organisation.

If you would like to download this statement click here