What's happening
Some of the things that affect us
Online survey from the NLH Learning Disability Specialist Library
The
NLH Learning Disability Specialist Library team want to know what you think
of their web site.
Please take a couple of minutes to complete the online survey. Everyone who
completes the survey will be entered into a prize draw for a brand new iPod
shuffle! Complete the survey at:
http://www.library.nhs.uk/learningdisabilities/
Inclusion, integration and accessibility in the arts?
National Conference presented by Touch Trust in association with Wales
Millennium Centre
20 October 2008, 10am - 5.30pm
Wales Millennium Centre, Cardiff Bay
Touch Trust is a charity which offers daily creative movement programmes for people of all ages with complex needs. We live in the iconic arts venue, the Wales Millennium Centre in Cardiff alongside six other arts organisations with whom we regularly collaborate on creative projects. This makes for exciting arts programmes and performance opportunities for our guests and the development of good partnerships with other companies.
In a packed programme of presentations and case studies, the conference will also offer the opportunity for discussion and debate on the values, obstacles and challenges to inclusive community arts. To have your say and find out more about the work of Touch Trust, book now for this interesting and busy day!
The Question Time panel includes representatives from: National Disability Cultural Projects; British Institute of Learning Disabilities; PMLD network; Foundation for people with Learning Disabilities; Welsh Centre for Learning Disabilities; Wales Millennium Centre; Touch Trust; Galeri, Caernarvon; Arts Council of Wales.
The full programme and booking form are available on the Touch Trust website
www.touchtrust.co.uk.
Alternatively call us on 029 2063 5663 or email
debbie.court@wmc.org.uk.
Download:
Flyer
Booking
form
Programme
Research into disabled peoples use of the railway
Dear Participant My name is Justin Ryan and I am the Accessibility and
Inclusion Manager for Southeastern Railway. As part of a university course in
Inclusive Design I am carrying out research into disabled peoples use of the
railway. I would like to understand what disabled people know of the railway,
what helps them to be able to use it or indeed prevents them from doing so. I
would also like to understand what may need to change for them to start using
the railway more or for the first time. Below you will find a link to the on
line questionnaire which I hope you will find the time to respond to. You should
be able either to click directly on the link or you can copy and paste it
directly into your web browser, it is all done on line and nothing is downloaded
to your computer. The survey will take between 10 -20 minutes depending on your
responses and should be completed in one go. You will find the first questions
relate to your willingness to take part and these do need to be answered before
continuing with the rest of the survey. Your responses will be invaluable to me
whether or not you use the railway and indeed whatever your mode of transport
is. If you know other disabled people with internet access, possibly within your
group or charity, I would appreciate it if you could pass this e mail on. No
participants details will appear in the final report and all responses will only
be seen by me. Unfortunately I cannot accept paper versions of the survey as I
wont have the time to do lots of manual entries .This will affect the randomness
of the survey (ie limited to those with internet access) but I will make this
clear in my findings. Many thanks for taking the time to take part in this
survey.
The closing date for the survey is 22nd July. If you would prefer a large print
version of the survey, please click on the large print link indicated, the
survey will also work with screen reading software.
Standard Size
Large Print Size
Alternatively try:
Kind Regards Justin Ryan Accessibility and Inclusion Manager Southeastern, Floor
3, Friars Bridge Court, 41-45 Blackfriars Road, London, S.E.1 8PG T. 0207 620
5536 int 00-0075536 M. 07771 827121 F. 0207 620 5547
Tell it like it is
What
the crisis in social care really means for people with
a learning disability.
This report reflects the experiences of a group of people who are often unheard,
and for whom reality does not match up to the very many promises that have been
made.
Full report
Easy read
version of report
New National Family Carer Network website
The new National Family Carer Network website www.familycarers.org.uk was launched on 10 June to mark Carers Week. It offers accessible information about local support groups/organisations, regional and national events, and policy issues of interest to family carers and carers workers.
Mencap launches online support for parents and carers
Mencap, the learning disability charity, has launched a new website with a
section dedicated to providing essential information and support to the families
and carers of children with a learning disability.
As well as guides on key topics such as assessments, leisure and choosing a school, the ‘ages and stages’ section of the site gives parents an insight into what to expect at each stage of their child’s life.
The site also has a new discussion forum, where families and carers can share their experiences, ask questions and find advice and support.
“There was just so much information. Because we were coming to terms with having a child with a learning difficulty, it was actually too much to take in,” said Jo Yarnell, mother to five-year-old Hannah.
“As soon as I spoke to other parents, they just said ‘yes, what you are going through is normal - that is exactly how we felt’. It just took an absolute weight off my shoulders.”
For more information visit www.mencap.org.uk/families
New Social Arena for Carers and Care Sector Workers
A new website and forum has been developed for Carers, whose domestic situation can often be isolating and those who work in the Care Sector for whom unsociable hours and stressful situations may well affect their social life. By sharing experiences with others who understand, we hope to lighten the load and have some fun, an ingredient often missing when undertaking a caring role.
We would be very grateful if you could advise your staff and carers of our new website, and if possible even display our details on your notice board.
Full Membership of our site which includes access to the forums, live online chat, and private messaging is FREE.
This is a one-time only email. Therefore we would be grateful to you if you would also forward this email to any of your colleagues or service-users who you think might be interested in our provision.
For the website see: www.carersconnect.com
Launch of the PMLD Network website
BILD is a member of the PMLD Network which is a group of people and organisations working together to improve the lives of people with profound and multiple learning disabilities (PMLD).
The PMLD Network has just launched their new website
www.pmldnetwork.org
Please visit it and find out more about what they do and how you can get
involved.
New advisors help get learning disability issues heard
Professionals from across the private, public and voluntary sectors have come together to fight for a fair deal for people with a learning disability. The newly formed advisory board has been set up to support the Learning Disability Coalition in its work to raise the profile of learning disability issues in the light of the adult social care green paper due later this year.
The group of advisors will provide support for the Coalition by providing objective advice on strategy, policy and profile.
Members of the advisory board span various professions, bringing a breadth of experience to the campaign. They include former senior civil servant Sir Christopher Kelly, who is currently the Chairman of the Committee on Standards in Public Life, Chairman of the Financial Ombudsman Service and Chairman of the NSPCC; Prof Eric Emerson: Professor of Disability and Health Research at the University of Lancaster and Visiting Professor in the Faculty of Health at the University of Sydney; David Brindle, Public services editor, Guardian; Dr Stephen Ladyman MP, Labour MP for South Thanet and former Care Services Minister and Transport Minister; Nick Brookes, non-executive director, Next; and Prof. Martin Knapp, Director of the Personal Social Services Research Unit at the London School of Economics, Professor of Social Policy and co-director of LSE Health and Social Care (see full list of members in notes to editors).
Dame Jo Williams, Chair of the Learning Disability Coalition and chief executive of learning disability charity Mencap, said: “We are delighted to have the opportunity to tap into such a wealth of knowledge. The next few months are vital if we are to ensure that the adult social care green paper delivers for people with a learning disability. We want to make sure the government provides enough public money so that all people with a learning disability have access to good quality care.”
Professor Martin Knapp, a member of the committee, said: "Gathering sound evidence about demographic trends that are causing an increase in demand for services for people with a learning disability is crucial. Without this information, the Government cannot know what level of resource to allocate and how to use this to best effect. Our aim is to work closely with Government. After all, we all have the same aim - a better quality of life for a group of people who are often overlooked."
Learning Disability Coalition
The Learning Disability Coalition is formed of ten organisations:
- Mencap
- Foundation for People with Learning Disabilities
- Association for Real Change
- British Institute of Learning Disabilities
- Down's Syndrome Association
- National Forum for People with Learning Disabilities
- People First
- Sense
- Turning Point
- United Response
To find out more, go to www.learningdisabilitycoalition.org.uk
Learning Disability Coalition Advisory Board members
Sir Christopher Kelly: former senior civil servant who is currently
the Chairman of the Committee on Standards in Public Life, Chairman of the
Financial Ombudsman Service and Chairman of the NSPCC.
Prof Eric Emerson: Professor of Disability and Health Research at the
University of Lancaster and Visiting Professor in the Faculty of Health at the
University of Sydney.
David Brindle: Public services editor, Guardian. Visiting fellow at the
centre for citizen participation at Brunel University.
Prof. Luke Clements: Professor at Cardiff Law School and a consultant
solicitor specialising in public and human rights proceedings on behalf of
socially excluded groups, in particular disabled people and Roma.
Prof. Jim Mansell: Professor of Learning Disability at the Tizard Centre
at the University of Kent and a commissioner for the Commission for Social Care
Inspection (CSCI). Also a trustee of United Response.
Prof. Martin Knapp: Director of the Personal Social Services Research
Unit at the London School of Economics, Professor of Social Policy and
co-director of LSE Health and Social Care.
Baron Adebowale of Thornes: Chief Executive, Turning Point and Co-Chair
of the Black and Minority Ethnic Mental Health National Steering Group.
Lord Brian Rix CBE DL: President of Mencap
Dr Stephen Ladyman MP: Labour MP for South Thanet and former Care
Services Minister and Transport Minister
John Bercow MP: Conservative MP for Buckingham, member of the
International Development Select Committee and leading the Government review of
support for children with speech, language and communication needs.
Nick Brookes: non-executive director, Next. Former Chairman, British
American Racing.
Dame Jo Williams DBE: Chief Executive, Mencap, Co-Chair of the Learning
Disability Coalition
Karen Flood: Co-Chair of National Forum for People with Learning
Difficulties and Co Chair of the Learning Disability Coalition
Top
Petition for the Prime Minister to ratify the UN Convention on the Rights of Persons with Disabilities
National disability organisation Scope is calling on the Government to ratify
the UN Convention on the Rights of Persons with Disabilities as a matter of
urgency.
The Convention is the first treaty in history to give the millions of disabled
people across the globe comprehensive human rights and recognise that disabled
and non-disabled people share a common humanity.
Deadline to sign up by 18 August 2008.
More about petition Sign up online
From April 1st there is free bus travel for all disabled people
This concession will enable eligible disabled and people over 60 free access
to any bus route in England, during off peak periods.
This substantially extends the current concession which only allows eligible
disabled and people over 60 access to free bus travel in their local area.
It is hoped that the concession will provide people with more free and
independence, and a more economical means to visit friends, family and access
services.
The people eligible for this concession include people who are sixty or over
or who have a disability as follows:
- blind or partially sighted
- profoundly or severely deaf
- without speech
- have a disability, or have suffered an injury, which has a substantial and
long-term adverse effect on their ability to walk
- do not have arms or have long-term loss of the use of both arms
- have a learning disability - a state of arrested or incomplete development of
mind which includes significant impairment of intelligence and social
functioning
- would have an application to drive a motor vehicle refused due to their
disability
Want to find out more? Talk to your existing pass provider or visit www.direct.gov.uk/buspass
News programme for learning disability audiences to launch on Community Channel
ITN and Media Trust Productions have joined forces with Mencap, the UK learning disability charity, to produce a news programme, Your News (working title) premiering on the Community Channel, for viewers with a learning disability or difficulty. There is no news programming that currently exists in the UK for people with learning disabilities and difficulties and research shows there is an appetite for it.
Initially a pilot, with plans for a weekly fifteen minute news bulletin, the
programme is co-presented by ITN On journalist, Olivia Hill, and Andrew Lee,
Director of People First. The programme will feature a round-up of the week’s
leading national, international, sports and showbiz news stories, as well as
airing special features produced by journalists with a learning disability about
issues of concern for the audience. ITN and Media Trust Productions have been
advised by Mencap on accessibility issues and suitable feature ideas.
Download
more information in pdf format
A Life Like Any Other?
On Thursday 6th March 2008, The Joint Select Committee on Human Rights published their report on human rights and learning disabilities. It provides a picture of neglect, abuse and the denial of human rights to people with learning disabilities in the UK.
Andrew Dismore MP, Chair of the Committee, said:
'There is a real gap between the Government’s policy which is designed to
improve the lives of adults with learning disabilities and their everyday
experience. We were particularly shocked by witnesses who told us that even in
cases of horrific abuse or neglect, staff simply did not know that what they
were doing was wrong. We heard compelling evidence that people with learning
disabilities wanted to play a greater role in speaking up for their rights.'
In response to the report Keith Smith, Chief Executive of BILD, said:
'Although the contents of the report are disturbing, I am pleased that the
Committee has described what is really happening in the everyday lives of people
with learning disabilities and their family carers.
BILD agrees with the findings and recommendations, and accepts that a cultural
change is needed so that people with learning disabilities can become equal
citizens, treated with respect and dignity. This can only be achieved when their
human rights are understood, recognised and actively supported.'
The report ‘A Life Like Any Other?’
can be downloaded from
www.parliament.uk. An easy read summary is available -
click here to download.
Have your say: Developing the annual health check in 2008/2009
The Health Care Commission is currently consulting on what the Annual Health Checks should look like for 08/09. There is a proposal to include some indicators for learning disability. There is concern that the HCC have had a poor response from learning disability and as a result may lose these indicators. The closing date is 12th March and all the details can be found on the Health Care Commission website: www.healthcarecommission.org.uk/consultation
Download (in pdf format): Information on proposal Questionnaire
Valuing People Now – what do you think?
On December 12th 2007, over 100 delegates gathered at the Oxford Hotel Oxford
to take part in a national consultation event about Valuing People Now. The
event was co-ordinated by BILD and the Learning Disability Coalition and
delegates included people with learning disabilities, family carers, service
providers, commissioners, multidisciplinary professionals, policy makers and
regulators.
Jackie Downer, Linette Farquarson, Robina Mallett, Neil Lockwood and Michael
Ratcliffe provided their own thoughts on the impact of Valuing People so far and
their hopes for the next 3 years. Having the views of people with learning
disabilities and a family carer was a powerful start to the day and was the
perfect introduction to Rob Grieg’s overview of Valuing People Now.
Delegates spent the rest of the day discussing the “big priorities” of:
- Choice and Control
- Better Health
- What people do during the day
- Better training
- Making the money work
In addition, there were opportunities to share views about other issues
including behaviour support, workforce, advocacy and transition. The various
views and opinions were recorded and will be drawn together as a report of the
event. This will be submitted as part of the Valuing People Now consultation
process and will be available on this website shortly.
Vanessa Randle (thinking visually ltd) provided support as a graphic facilitator
and has produced a pictorial summary of the day. This can be downloaded
here as a pdf file.
Valuing People Now – consultation period – extended until 28th March
"People with learning difficulties have a right to high quality support" says BILD in response to Healthcare Commission report
The
Healthcare Commission has published “A life like no other” which reports
on the first national audit of specialist inpatient healthcare services for
people with learning difficulties in England.
The audit was undertaken in response to the Commissioners’ investigations in
Sutton and Merton and Cornwall that had revealed wide ranging institutional
abuse. Although nothing as serious was discovered, and there were pockets of
good practice, overall the report is both bleak and depressing. This is because
it paints a picture of generally poor standards of care, unwelcoming
environments, a lack of care planning and little or no involvement of people in
choices or decision making. Front line staff are badly trained and supported,
with a lack of supervision, management and leadership. The quality of the
support offered is often not monitored or checked in any way.
Keith Smith, BILD’s Chief Executive, said “people with learning difficulties
are being treated like second class citizens. They have a right to high quality
support to enable them to participate fully in their local communities”.
Read the Healthcare Commission report and BILD's response in full
New figures reveal true extent of restriction of access for the vulnerable
The true extent of the withdrawal of services for
vulnerable people has been revealed today by new figures, secured by the
Learning Disability Coalition. The Learning Disability Coalition is made up by
the Foundation for People with Learning Disabilities, Association for Real
Change, British Institute of Learning Disabilities, Down's Syndrome Association,
Mencap, National Forum for People with Learning Disabilities, People First,
Sense, Turning Point and United Response.
Download press-release
The Mansell report 2007
Read
BILD response to the ‘Services for People with learning Disabilities,
Challenging Behaviour or Mental Health Needs’ authored by Professor Jim Mansell.
Download Mansell Report
Download BILD response
Call for families to test law on short breaks
Legal experts say right to breaks may already exist
Every Disabled Child Matters is calling for families with disabled children who have been refused support by their local authority to come forward to take part in a groundbreaking wave of legal test cases. The cases are based on a legal opinion from expert community care lawyers which suggests that, in certain situations, families with disabled children may already have a legal right to short breaks.
The campaign is emailing its supporter base of 28,000 supporters to encourage families who have been denied support to come forward and take legal advice on bringing a case. Families are being encouraged to call the Contact a Family free phone helpline on 0808 808 3555 to get further advice.
Families with disabled children have repeatedly reported that short breaks are their number one service priority - yet currently, only 1 in 13 families receive any kind of support service. EDCM therefore believes that families with disabled children should have a clear legal right to short breaks to enable them to keep caring.
The campaign instructed two leading community care lawyers, Paul Bowen and Luke Clements, to provide a legal opinion. The lawyers advised that there is a 'strong argument' that a legal right to short breaks for families with disabled children in the greatest need already exists in England and Wales. However, they emphasise the 'extraordinary complexity of the current legislative regime and the extreme difficulties some families face in accessing vital support services.' Alongside EDCM, they recommend reform of the law: 'reform that clarifies, simplifies and underpins the rights of disabled children and their family carers.'
EDCM is looking for families who have been assessed as needing short break services but have been refused these services, for example on resource grounds. Families will also need to be on a low income and eligible for legal aid, so that the costs of the case will be covered.
Steve Broach, Campaign Manager for EDCM, comments:
'In response to EDCM campaigning, the government has invested an extra £370
million in short break services over the next three years. This money is
extremely welcome - but it will not last forever. To reinforce this improvement,
we also want a legal guarantee that families will get the support they need. The
legal opinion suggests that thousands of families with disabled children have
been denied services which may have been theirs by right. That is why we are
urging our supporters to come forward to bring a case to court to test the
current state of the law.'
Learning Disability Coalition
Learning Disability Coalition calls on government to provide same funding for adults with a learning disability as children, in Comprehensive Spending Review.
The Learning Disability Coalition (LDC), a group of
ten learning disability charities, is calling on the government to make the same
extra investment in funding services for adults as it recently did for children
with a learning disability (£340 million.)
The LDC is asking the Treasury to see the upcoming Comprehensive Spending Review
(CSR) as an opportunity to invest greater funds into services for adults with a
learning disability, to ensure there is a seamless transition of care throughout
people's lives.
Dame Jo Williams, chief executive of Mencap and co- Chair of the Learning
Disability Coalition, said:
"The additional funding should be regarded as a down payment to meet the growing demand for services. It is estimated that there will beat least an 11 per cent increase in the number of people with a learning disability between 2001 and 2021. And those over 60 are likely to increase by 36 per cent. We must make sure that there are enough resources to support these people, giving them and their families the quality of life they deserve."
The Learning Disability Coalition recommends that,
by the next CSR, Government should carry out a thorough evaluation of
demographic, economic, health and social trends and their impact on the resource
requirements of people with learning disabilities.
Barbara McIntosh, co Director of the Foundation for People with
Learning Disabilities commented:
“The truth is that the Government just does not
have sound data on which to estimate accurate public expenditure for services
for adults with a learning disability.
At least 80 per cent of people with a learning disability in the UK do not get
services tailored to meet their needs. That figure will get worse as current
cuts to services start to bite.
Carol Boys of the Downs Syndrome Association said “We are
experiencing a dramatic increase in the cries for help from people with Downs
Syndrome, and their families. Lack of day time activities will lead to mental
health problems and early dementia. In the long term this will put a far greater
burden on the public purse.”
Ivan Lewis, (the then Care Services Minister), announced in May, that the government would be refreshing its 2001 Valuing People report. The LDC welcomes this move and asks that the review addresses the need for more accurate information on which to assess the resource requirements of people with a learning disability. Without this they will never have the same chances and choices as everyone else.
The coalition submission (pdf format)
Join us now and enjoy the BILD membership advantage
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