much more than an advice service... www.disabilitylambeth.org.uk
@ComDevDASL
Welcome message Ebenezer Akinsanmi (Chair) and David Strong (Director) We’re very pleased to introduce another issue of DASL’s popular newsletter. Things continue to move very fast. Since our last issue in October we’ve held a very enjoyable AGM and organised a number of other successful events and training sessions. We have welcomed over 30 new disabled people as DASL members. Our services have continued to be exceptionally busy. In particular, there have been huge increases in referrals to our Advocacy and Direct Payments services as a result of the introduction of the Care Act and the Council’s renewed focus on encouraging users of social care services to take up direct
payments. We are now looking forward to our new Hate Crime advocacy and outreach service for disabled people starting in April. Our Community Development project is finding creative new ways to support and involve disabled people and Louise Holden will be delighted to hear from you if you have ideas you would like to discuss. We hope you enjoy reading about these and other developments.
Stroke Network After 7 eventful years we have, sadly, had to wind down DASL’s Stroke Network project from March because of a lack of funding. We still hope to fundraise enough money to keep the very successful London Stroke Choir going for the year ahead. We will also be able to give some support to stroke survivors interested in sport and physical activity opportunities through our Into Sport service. Manuela will continue to work for the Rosetta Life charity on its Stroke Odysseys project and will be based here in DASL. You can still contact us using the Stroke Network details on the back page so please keep in touch and we’ll let you know about things that may be of interest to you. Manuela Gouveia
Contents
6. London Mayoral Campaign
2. Welcome message
8. Your stories and tips
3. Find a PA event
10. Disability Hate Crime
4. Professional Advocacy
11. Opportunities to get involved
5. DASL AGM / Take our survey
12. Contact Us @ComDevDASL
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Creating opportunities for Personal Assistants In November 2015, our Direct Payments Support Service held the annual Personal Assistant Open Day, in partnership with Lambeth Council. A number of providers Lauren Johnson attended, including Skills for Care, TCR Training, Pay Packet and Premier Care.
“It was good to find ou t more about this kind of work and to learn from people who are alread y Personal Assistants.”
meeting staff teams from a local day centre to discuss Personal Assistant roles and with Lambeth Working to identify potential Personal Assistants.
More than 40 people came along for presentations, to speak to other Personal Assistants and to apply for vacancies to which the Direct Payments service is supporting clients to recruit. The day was an excellent opportunity to promote Personal Assistant roles in Lambeth and encourage people to find out more about the work that DASL does to support Direct Payments users to employ their own care and support staff.
We have been approached by a sixth form centre to present to their Health and Social Care students about Direct Payments and becoming Personal Assistants and are also liaising with Lambeth College to share our knowledge and experience with their students to ensure there’s a greater awareness of the career potential in becoming a Personal Assistant.
If you, or someone you know, would be interested in rewarding work as a Personal Assistant, you can find “Thank you so much for coming to sp students tod eak to the ay. It was a really inform and I am sure ative session the students got a lot out o f it.”
Several people who attended on the day have since been offered work by our clients and others have asked us to keep them informed of new vacancies as they arise, which will help us to offer a more effective recruitment service.
more information about job opportunities on the DASL website or by calling the Direct Payments team here at DASL . Our contact details are on back page.
With increased demand in the borough from people who want to explore Direct Payments as a way of organising their own care and support needs, we are @ComDevDASL
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DASL is much more than an advice service... Since the introduction of the Care Act in April 2015, DASL has been providing independent advocacy support to people who qualify under this legislation. The Care Act introduced a duty for Local Authorities to ensure that people have access to independent advocacy support where someone has substantial difficulties being involved in their care assessment or review, in their support planning or in safeguarding enquiries or reviews and they do not have an ‘appropriate individual’ who can support and / or represent them. While ensuring that our service continues to operate fully independently, we are having regular conversations with Lambeth Council about how our service can assist them to meet their duties. Claire Camplin, DASL’s Advocacy Service Team Leader, gives us an insight into the team’s work with this case study:
Claire Camplin
“John”* was referred to DASL for support during his needs review. John has dementia and has difficulties understanding his needs. He lives in a residential home with 24 hour support. John has lived there for some time. John has no family or friends and only knows the staff at his residential home.
Because John has difficulties understanding and remembering information about his needs and has no one who is not paid to support him during his review, he qualified for independent advocacy support under the Care Act. We met with John and spent time finding out about the things that were important to him, such as his safety, having choice and being able to visit Brixton. We supported John to understand the review process using a range of accessible materials. We also supported John during his review and raised concerns on his behalf that the support he was getting did not enable him to get into Brixton regularly. We raised concerns with John’s Social Worker that the inflexibility of his support did not promote his wellbeing. We also supported John to raise his views that he didn’t have choice in his meals and missed specific foods that were culturally important to him. As a result of our advocacy support John now has access to a wide range of food of his choice and is supported to access his local community. We ensured that John’s assessment was holistic and accurate documentation was kept regarding John’s wishes and needs.” More information about the Care Act advocacy duties can be found at our website. We are pleased to advise anyone interested in our service about the situations in which the Care Act gives people a right to independent advocacy support. http://www.disabilitylambeth.org.uk/dasl/advocacy/ @ComDevDASL
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*name changed to protect identity www.disabilitylambeth.org.uk
DASL AGM December 2015 It was all about access this year. We held the AGM at 336 Brixton Road on Friday 4th December 2015. Thank you to those of you who made it, it was great to see so many of you. The feedback has been well received, with many members saying how much they enjoyed the afternoon session, “Access all Areas”, organised by Louise Holden, Community Development Worker at DASL. Members said it was great to be able to find out about all the work around access going on in the borough in one place and have the panel to ask questions about their work. Organisations who were involved on the day including Digibuddies, Your New Town Hall Project, Lambeth Pan Disability Forum, DASL Into Sport Project, Disabled Go and Transport for All.
Panel of Access Experts during the AGM
Louise is aiming to get the momentum going around access issues and is currently working with the DASL Into Sport Access Champions; the Lambeth Pan Disability Forum and Digibuddies, as well as keeping up-to-date with the Your New Town Hall Project and getting involved with Transport for All’s Lambeth campaigning group.
What matters to you? So far, we have had about 50 responses to our survey, which is great. We are asking some questions about what matters to you as someone living in Lambeth who is disabled, has a long-term health condition and / or is an unpaid carer. We need to hear from you so that we can develop DASL’s own services to help people more effectively and to enable us to campaign with you for better services from the Council and other providers. Results so far show that the majority of people have a disability and a long-term health condition and are also carers. The main age group we have heard from is people aged 40 - 59 years. The main issues being raised are finance and transport. The majority of people would like to become more involved in DASL’s campaigning. Tell us what matters to you by filling in the survey via http://tinyurl.com/j48w7b4. If you prefer, please ask for a copy by post or email, call Louise on 020 7501 8976 or email lholden@disabilitylambeth.org.uk @ComDevDASL
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London Mayoral Election Though DASL’s Community Development work, we are making closer links with Inclusion London and a number of the other London Deaf & Disabled People’s Organisations (DDPOs) which they support. Inclusion London held an event in December 2015 for Deaf & Disabled People Organisations to find out more about the Mayoral Elections and to get feedback on what was felt to be the important questions for the candidates running for Mayor. The website www.londonelects.org.uk gives lots of information on the candidates and the election and voting process. The election for the next London Mayor will be this year on 5th May. The priority issues for disabled people which have been identified by Inclusion London are: Inclusion London’s top five demands: Commit to the principle of, and practice of, “Nothing About Us Without Us” Reduce the disability inequality gap in London Address the housing crisis for Disabled Londoners Effectively tackle Disability Hate Crime in the capital Champion best practice access and inclusion Commit to the principle of, and practice, of “Nothing About Us Without Us” Establish a post of disability equality policy adviser within the Greater London Authority with sufficient influence to truly embed a social model approach to disability across the GLA. Establish a regular forum for London DDPOs, co-facilitated jointly by Inclusion London and the GLA, to feed into GLA and Mayoral policy development. Membership should include Assembly Members and the Mayor / Deputy Mayor with attendance from key policy makers within the GLA appropriate to the agenda items. Ensure Deaf and Disabled Londoners are able to input in accessible ways to the development of the next London Plan. Reduce the disability inequality gap in London Develop, in co-production with DDPOs and the wider voluntary sector, an advice and advocacy strategy for London to ensure adequate access to information, advice and advocacy for Londoners including Disabled people. Work with London employers to promote the employment of Deaf and Disabled People and raise awareness and take up of the Access To Work scheme amongst employers. Ensure the London Health Inequalities Strategy and the London Health Improvement Board address the specific health needs and health inequalities experienced by Deaf/ Disabled people.
DASL has a twitter list for the elections, check out https://twitter.com/ ComDevDASL/lists/london-mayoral-election and join in the conversation www.disabilitylambeth.org.uk @ComDevDASL 6
Address the housing crisis for Disabled Londoners Build more truly affordable social housing in order to provide low cost secure tenancies for Disabled Londoners. Commit to retention of the current London Plan targets for all new build to meet Lifetime Homes standards with 10% of new build to be wheelchair accessible. Carry out a comprehensive assessment of accessible and adapted housing across London in order to influence planning and provision that is targeted at need. Effectively tackle Disability Hate Crime in the capital Support DDPO led training in recognising and reporting disability hate crime for frontline Metropolitan Police staff. Promote and resource the development of DDPOs as third party reporting centres and specialist advocacy providers for victims of disability hate crime working with the Mayor’s Office for Policing and Crime (MOPAC). Support from the Mayor to lobby national government for equality of legislation so there is parity with the law which covers the other four hate crime strands. Champion best practice access and inclusion Work with London DDPOs to evaluate the interlinking social and economic factors that impact on the participation of Deaf and Disabled Londoners in sport. Ensure all commissioned and contracted providers, working on behalf of the Mayor and the GLA, fulfil Equality Act duties and demonstrate a proven track record and continuing commitment to providing accessible and inclusive services and employing Deaf and disabled people.
SAVE THE DATE You are invited to attend the London Mayoral Election Hustings, organised by Inclusion London to meet the mayoral candidates and put questions to them about what their plans are for Disabled Londoners. Date: Tuesday, 5th April 2016, 11am – 1pm Location: Student Central, Malet Street, London, WC1E 7HY More information via the newly revamped Inclusion London website www.inclusionlondon.org.uk
@ComDevDASL
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Your Stories & Tips Louise has been keeping in contact with DASL members who are very active online via Facebook and two have kindly offered to give some personal accounts for this newsletter. Many thanks to Poppy and Veronica! If you are interested in submitting a personal story, please contact Louise on 020 7501 8976 or lholden@disabilitylambeth.org.uk or link up via http://tinyurl.com/qd5lhcr
Online is a lifeline by Poppy Hasted “All in all, my computer is now my electronic lifeline. Only yesterday there was a problem with my broadband connection and I couldn’t get online, get on with my writing or anything for four or five hours. It was horrible! I was lost. Sure, I may have had to pay for my connection, buy a computer and learn how to use it but it’s not cripplingly expensive and I’m learning as I go along. Being stuck in bed most of the time could be really dull and boring but my computer is my escape route and there’s no way I could live without it. Friends and family, hobbies and support, retail therapy and essential shopping, advice and information, leisure and necessity, it’s all there waiting for me and all I need is a computer and an internet connection to be able to access it all.” The above is an extract of a blog written by Poppy. You can carry on reading online via https://poppyhasted.wordpress.com/2016/01/28/my-electronic-lifeline/ ***** Poppy has also had an article published in the Daily Mirror recently about her experience of being seen as a “bed blocker” in hospital, read more via http://tinyurl.com/hkov4c9
Laptop stands designed for use in bed Poppy also wanted to share her top tip if you spend a lot of time in bed due to health reasons and use your computer regularly. Using a laptop stand that is designed to support you to use your computer in bed is vital to prevent neck and back strain. The link below takes you to a Google search for these types of stands so you can see the variety available and identify which one would suit you. http://tinyurl.com/gojohgy @ComDevDASL
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Your Stories & Tips medication, I was hesitant. These steroids are not the kind that builds muscles like weight lifters. The pale blue bitter pills were ‘beneficial’ in increasing my strength, but awful in ruining my bones, stomach and eyes.
My Relapse, by Veronica “This is not exactly like my ‘walking diary’, but walking, or the inability to walk was a major part of that week. Like the stupendous blogger Poppy Hasted, I have MS, secondary progressive; I have had relapses since August 1997, so I recognise the signs. So when my body started to misbehave, throw a tantrum when I really need it to be on top condition, I wasn’t impressed.
My bones became very painful, throbbing. I felt ‘the weather’, the cold leaving my legs feeling bruised. I have to take calcium supplements for ‘osteopenia’, a result of many courses of intravenous cortisone treatment without calcium replacement. It was worse than the growing pains of teenagers; similar chemicals but no growth spurt. It did reduce the inflammation.
At the end of November whilst my mum was having tests before her cancer treatment, I had a relapse. Numbness that refused to go from my hands, quickly spread to weakness in my legs. I started falling a lot. People, strangers, had to help me when I fell in a toilet at St Thomas’ Hospital. I could not put any weight on my legs. Although my brain thought it would be safe, my muscles, the nerves, were not working at all and folded like a deck of stacked cards.
Feeling so weak, hurting like you have been involved in a major accident can be disheartening, but as DASL readers will know, we are tough nuts. We have all had to go through obstacles. I couldn’t focus, see things clearly; things that were in front of me were blurry. Like a newborn foal, gingerly testing my new legs. I had to use my arms to lift my legs, especially my left, as I have ‘ataxia’ in that leg; this is a fancy term for no coordination, or control of a limb.
As I explained before, time has led to me losing all sense of embarrassment years ago. Annoying doesn’t come into it. After proving through two separate tests, that I was ill I then had to wait for steroids to be ordered. In the meantime, my legs were like dough, no structure and heavy; a dead weight. I couldn’t balance properly, I didn’t make the right judgments when choosing to let go of hand rails. When transferring from my walk in shower to my wheelchair well I’d collapse. My neighbours were a godsend then.
I should by now have an honorary medical degree with my knowledge of medical terms, but well I don’t think I could ever practice. Who would want a doctor with a tremor? Anyways, it was a slow recovery. But onwards and upwards or should I say forwards, I’m not good with stairs...”
However how much I needed the @ComDevDASL
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Disability Hate Crime Hate Crime Awareness Week was in October 2015. Louise Holden reflects on the Lambeth Disability Hate Crime Partnership’s event., “No Place for Hate” About 50 people attended the event on Wednesday 14th October 2015 at 336 Brixton
Road. Members of Lambeth Mencap and the Learning Disability Assembly performed an enlightening and engaging drama which prompted a lively discussion about hate crime and what to do about it. People were encouraged to add their comments and views to our graffiti wall (right), which was an opportunity to share personal experiences and hear about the support available from the local police and other agencies. Mosaic Clubhouse videoed key points in the day and gave participants an opportunity to record their stories. Footage has been edited and now available via the DASL YouTube channel at http://tinyurl.com/ js3hhqn. Visit http://tinyurl.com/jel5mjy to download the full report or call us for a copy on 020 7501 8976.
Exciting Announcement for 2016 - a new DASL service At the event, the Partnership announced that Trust for London had awarded £70,000 over two years to fund a part-time Hate Crime Advocacy and Outreach Worker . The post will be employed by DASL on behalf of the Partnership and our worker will support disabled people who are victims of hate crime and raise awareness of this issue through outreach visits and talks at community groups, disability organisations, schools and colleges and libraries. One of the first projects will be to set up We are 336 as an official Hate Crime Reporting Centre. DASL has recently filled this new post and the service will start in April. www.disabilitylambeth.org.uk @ComDevDASL 10
Get Involved with Access Following on from the success of the DASL AGM, Louise is keen to hear from anyone interested in joining the DASL Access Group for Lambeth. This group will meet to look at all aspects of access, focusing on the Your New Town Hall Project and Digibuddies initially, but also looking at the state of pavements, obstructions, accessible pubs and restaurants. Louise Holden
This is building on the work of DASL’s Into Sport Access Group, which has been focusing on access barriers to disabled people who wish to use Lambeth’s Leisure Centres and other venues offering sporting activities. Some of the Into Sport Access Group members and Louise attended a very informative two day training session on Access Audits and have got great support from the trainer, Ian Streets, who runs an Access Group in Hull. We are also working closely with DisabledGo which will be carrying out access reviews of a large number of Lambeth venues later in 2016. This project is at the planning stage so please register your interest with Louise via email lholden@disabilitylambeth.org.uk or 020 7501 8976. As always, you can keep in touch with DASL via our Twitter @ComDevDASL
We Need You! As Louise reports above, our Access & Advocacy Group recently attended a two day training course on how to conduct Access Audits (right and below). The members are very excited and keen to get some audits under their belts and to develop the group further. If you are interested in joining our Access & Advocacy Group they meet on the second Thursday of every month at DASL. More people are needed to become involved in the project and spread the good news to other disabled people in the borough.
Moving On! After more than three years at DASL, our Into Sport Worker Tricia Reilly is sad to be leaving for pastures new. She has very much enjoyed working with everyone on the project which has done some very creative and successful work under her leadership and looks forward to keeping in touch. We will be recruiting a new worker to the project as soon as possible but you can keep in touch via the details on the back page in the meantime. @ComDevDASL
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We are sailing! Tricia with Into Sport ambassadors Vivian, Helen & Charles
www.disabilitylambeth.org.uk
Contact Us Write to us at: “We are 336” 336 Brixton Road London SW9 7AA
much more than an advice service...
General Enquiries call 020 7738 5656 or email enquiry.line@disabilitylambeth.org.uk Direct Payments Support: 020 7501 8960 or email direct.payments@disabilitylambeth.org.uk Professional Advocacy: 020 7501 8966 or email advocacy@disabilitylambeth.org.uk Specialist Mental Health Advice Service: 020 7738 5656 (leave a message) or email enquiry.line@disabilitylambeth.org.uk RAD Advice and Support for Deaf People: 07749 965 727 or email advice@royaldeaf.org.uk Stroke Network: 020 7642 0040 / 07773 810 264 or email stroke.network@disabilitylambeth.org.uk Into Sport Project: 020 7501 8964 or email intosport@disabilitylambeth.org.uk Community Development, Membership, Volunteering, Newsletter and Social Media enquiries Louise Holden on 020 7501 8976 or email lholden@disabilitylambeth.org.uk Independent Living and Carers’ Partnership Enquiry Line: 020 7346 6800 or email info@ageuklambeth.org.uk
DASL’s main funders are Lambeth Council, Trust for London and Sport England Charity No. 1087399 A company limited by guarantee registered in England & Wales No. 04214688
@ComDevDASL
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