Hello Friends and Supporters,
As we begin a new year, we are excited about what 2025 has in store for Lewisham Speaking Up.
At our recent AGM, we looked back on a successful year for our charity and looked forward to 2025, which marks our 20th year of advocacy. We launched our updated logo for the coming year and even had a special birthday cake!
Watch out for some events in spring and summer to celebrate 20 years of working with people with learning disabilities to get their voices heard.
In December we joined the Lewisham Safer Neighbourhood Board as an affiliate member and we’re looking forward to putting together and sharing the report from our recent People’s Parliament on safer streets. You can read more about that and our other fantastic self-advocacy work below.
Our 1-2-1 advocates have been working as hard as ever to support people with a range of problems. We deal with a lot of housing related cases, as well as supporting people to resolve financial and benefit issues. You can read more on both of those subjects below.
Finally we have been proud to represent Lewisham on a national level. First by training staff at the Department of Health and Social Care (DHSC) on the importance of co-production with people with learning disabilities from Black, Asian and Minority Ethnic Communities.
Second, we are also working with the Local Government Association and other self-advocacy groups on national guidance for commissioners on why funding self-advocacy is so important.
As we enter our third decade of self-advocacy and advocacy, we are really looking forward to developing more new partnerships and working to end the inequalities that face people with learning disabilities.
Self-Advocacy
People's Parliament
On 6 December we had our final People’s Parliament of the year on the topic of Safer Streets.
We were joined by Duncan Jackson from the Met Police who told us about the work that the police are doing about knife crime, drug crime and violence against women and girls. He also took the time to hear what we had to say about our experiences on the streets.
Sharon Kilborne came to talk to us about hate crime. She talked about what hate crime is and what we should do if we experience hate crime. We had three workshops, about hate crime, street disorder and safe places. People said that everyone has a right to feel safe and be part of their community, and it’s important we can go out safely so we can live our lives.
Our next People’s Parliament will be on
14 March 2025 at the Civic Suite starting at 10:30am.
Health Inequalities
This year we have talked a lot about health inequalities.
We have worked with My Life My Choice on their We Can’t Wait campaign.
We have also been working with Learning Disability England and the Race Equality Foundation on delivering training to NHS Civil Servants. People with learning disabilities from Black, Asian and minority ethnic backgrounds have lower life expectancies and are less likely to get proper support when they get ill, which means they are less likely to get better. We want people to know how important it is to work with people with learning disabilities from Black, Asian and minority ethnic backgrounds, and their families, to design services that help them. Sam delivered the training in December!
We also went to National Voices’ Health Inequalities Unconference. Ife presented with Gary Bourlet from Learning Disability England about the health inequalities for people with learning disabilities, and what the reasons might be for this. She talked about “diagnostic overshadowing”, where health problems are ignored because doctors assume it is part of a person’s learning disability. Then we talked with people who work on health inequalities for other groups of people about what they experience, and how it is similar or different to people with learning disabilities.
Hate Crime Awareness Week
During Hate Crime Awareness Week, we had a special Big Group. Dr Mark Brookes came to tell us about his hate crime training project. Colin Finch from Choice in Hackney also came and talked about what to do about hate crime related to money, such as scams where someone is targeted because they have a learning disability. Finally, Jon Au from Stop Hate UK came all the way from Liverpool to tell us about why it is important to report hate crime. He said that disability hate crime is not reported much, so the police don’t know that it is a problem and can’t do anything about it.
Some of our reps went to the Lewisham Safeguarding Adults Board to talk about disability hate crime.
We explained why people with learning disabilities don’t report hate crime enough.
We said that reporting to the police is not accessible for people with learning disabilities, and sometimes when we report a hate crime it is recorded as antisocial behaviour instead.
Tower Bridge Visit
Our new reps and old reps went to Tower Bridge!
We wanted to celebrate the work of our old reps, and welcome the new reps. Our self-advocacy work is funded by the City Bridge Foundation. They own the 5 main bridges in London, including Tower Bridge. We took the river boat to the bridge, then we went right to the top! We learnt lots of history and got to see the whole of London.
Lewisham Learning Disability Partnership Board
On the 9th December we helped to co-chair the third Learning Disability Partnership Board. The board meets four times a year, and is made up of:
- executive directors and commissioners from the council and NHS
- people who work with people with learning disabilities
- the Lewisham Speaking Up reps
- family carers.
We are talking about how we can make life better for people with learning disabilities in Lewisham. We are really enjoying being part of the board and are very happy that the people who come are committed to making things better.
At the first board meeting back in June, we met Gillian Douglas who is the executive director of housing in Lewisham council. She invited us to the Housing Provider Forum to meet with the managers of the main housing providers in Lewisham. Peter, Dinesh and Jan told the forum what people with learning disabilities find difficult about housing. They said that applying for housing is not accessible, and that people with learning disabilities are worried about the waiting list.
They also said that people with learning disabilities struggle with reporting repairs. Peter and Dinesh talked about some Lewisham Speaking Up members who haven’t been able to get the housing they need, and Jan talked about why it’s important to work with advocates.
Entelechy Arts
On the 9th December we helped to co-chair the third Learning Disability Partnership Board. The board meets four times a year, and is made up of:
- executive directors and commissioners from the council and NHS
- people who work with people with learning disabilities
- the Lewisham Speaking Up reps
- family carers.
We are talking about how we can make life better for people with learning disabilities in Lewisham. We are really enjoying being part of the board and are very happy that the people who come are committed to making things better.
At the first board meeting back in June, we met Gillian Douglas who is the executive director of housing in Lewisham council. She invited us to the Housing Provider Forum to meet with the managers of the main housing providers in Lewisham. Peter, Dinesh and Jan told the forum what people with learning disabilities find difficult about housing. They said that applying for housing is not accessible, and that people with learning disabilities are worried about the waiting list. They also said that people with learning disabilities struggle with reporting repairs. Peter and Dinesh talked about some Lewisham Speaking Up members who haven’t been able to get the housing they need, and Jan talked about why it’s important to work with advocates.
We have been working with Entelechy Arts to make sure the voices of people with profound and multiple learning disabilities are heard. We have been going along to their ambient jam sessions to learn more about communicating our wishes without using language. We have also invited decision makers to come with us. So far we have had:
- Councillor Edison Huynh, Cabinet Member for Culture and Communities
- Councillor Louise Krupski, Deputy Mayor
- Pinaki Goshal, Executive Director for Children and Young People for Lewisham
- Jennifer Daothong, Chief Executive of Lewisham Council
They said it helped them relax, and it made them think about how they can include people with profound and multiple learning disabilities more. We are looking forward to working with more decision makers this year.
1-2-1 Advocacy
Community 1-2-1 Work
Jan, our 1-2-1 Community Advocate, has an update and another case she would like to share.
Case 1:
In the last newsletter, I spoke about a case regarding a woman looking for supported living. I said I would let you know if she would be happy to accept a second property that was offered and was suitable for her needs.
Firstly I had the opportunity to visit the property with her after it had been decorated. It was very nicely presented and was near to her mum and Lewisham shopping centre.
However, although she had expressed some positive views, she declined to accept the accommodation. We were a little disappointed because it met most of her requirements. Nonetheless, the reality is that she has been living with her mum a long time and maybe this move was a bit too much for her. The suggestion now is that she should try some respite and see how she copes with that before she thinks about moving again. It just goes to show that for some people with a learning disability, taking that step away from the family home can be a long and challenging process. We wish her all the best for the future.
Case 2:
As we are on the subject of housing, I would like to share that myself and some Lewisham Speaking Up self-advocates had the opportunity to attend a housing provider. Hosting the event was Gillian Douglas, executive director of Lewisham Housing. There were also various social housing providers there such as L&Q, Peabody, Hyde Housing and Phoenix Housing.
Our self-advocates spoke about their own personal experiences and views on housing.
They feel it is difficult to contact housing providers on the phone as the queues can be long and the automated instructions can be complex. The alternative is to go online but, some find it difficult as they are not digitally literate. When people do get through, they said that the staff can ignore them and see their learning disability as a challenge. They can also be rude and abrupt. The results are that people feel vulnerable, isolated and lack confidence. Therefore they may not report a repair or any anti-social behaviour that needs addressing.
The self-advocates said they wanted the housing association staff to be more accessible and to listen, be patient and understanding. They want a more person-centred approach and for housing staff to see their personality as well as the disability.
The housing associations agreed they would change their technique on the phone, and ask if the person had a learning disability. They said they would adjust questions and answers to suit the person’s individual needs. They also offered to do some face to face appointments at Laurence House.
I also spoke about the importance of working with 1-2-1 advocates. I told them about a case I had worked on where someone was left in a dangerous situation as I couldn’t get anyone at the housing association to work with me. I said that we should all be working together so that people with learning disabilities get the best outcomes. Sometimes as an advocate, you can feel that you are seen as the enemy, but we are only trying to help people speak up and sort out their issues!
We know that more needs to be done by housing providers, but this was a positive start. We felt listened to, and we hope that they put the above into practice.
Money Management Advocacy Work
Michelle, our Finance Advocate, has had a very busy time with Money Management Advocacy.
Some good news is that Participant A who we advocated for, was awarded Personal Independence Payment (PIP) after a long time of not having it. This is what she said when she found out she was going to get her PIP money:
‘I was shocked more than anything else as I didn’t get it before. I was expecting a no answer. Michelle did all the form for me; I was so pleased that I got it finally! Because of my PIP I am doing so well. This is all down to Michelle and the Money Management Service.’
Money Management Workshop
We will be running a money management workshop at the Leemore Big Group on 29th January 10.30 – 12.00.
We are hoping to invite Sharod Johnson from Barclays Bank to talk to us.
Phone Michelle on 07565 280 157 if you want to come along!
Referral forms can be found here
