The X factor Why people with a learning disability should vote - Forced marriages

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The X factor Why people with a learning disability should vote - Forced marriages
The learning disability magazine
published by Mencap

March/April 2010

 The X factor
 Why people with a
 learning disability
 should vote

 Forced marriages
 Valuing People Now:
 One year in
 Autism assistance dogs
The X factor Why people with a learning disability should vote - Forced marriages
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The X factor Why people with a learning disability should vote - Forced marriages

      Contents                                 16-19

      4          Comment
      5-12       News
      13	Campaigns
          watch: Hate crime
      14-15	Forced into
                 People with a learning
                 disability are particularly

      16-19	Valuing People
             Now: One year in                   29
                 Reviewing the progress
                 of Valuing People Now

      20-23 The X factor                                20-23
            Why it’s more important
                 than ever for people
                 with a learning disability
                 to use their vote

      24-25	Having faith in
      	The Judith Trust is
        championing inclusion
        in Judaism                                38
      26-27	Slice of life
                  sing trained dogs to
                 support families of                   32
                 children with autism

      28-29 Resources
      30-31 Your Viewpoint
      32-33	Arts and leisure
      34-36 Mencap news
      37         Dates for your diary                              38
      38         Talkback
                 Gavin Harding on being
                 a campaigner

Viewpoint March/April 2010                                              3
The X factor Why people with a learning disability should vote - Forced marriages

          Viewpoint is also                                        The general election is getting ever-closer
          available on CD. You                                     and the political parties are gearing up for
    can listen to stories with                                     the battle to run the next government.
    this symbol next to it on                                          At the last general election, just 16% of
    the CD. If you would like to                                   people with a learning disability who were
    receive the CD, call 020                                       eligible to vote did so, compared to 61% of
    7696 5509 to ask for your                                      the population as a whole. This time, with
    free copy                                                      the future of social care a crucial issue for
                                                                   whichever party wins, it’s never been more
    The learning disability magazine                               important for people with a learning
    published by Mencap                   disability to use their right to vote.
                                              On pages 20-23 you can find out more about the campaigns
    March/April 2010
                                          to make politics accessible and the resources that are available
    Issue number 115
                                          to support people with a learning disability to get involved.
    Editor:                                   Also this issue, it’s been a year since Valuing People Now was
    Claire McMinn 020 7696 5553           published. Are the government’s learning disability plans making
                                          a difference? Turn to pages 16-19 for our analysis.
    Assistant editors:
                                              And on page 13, our new ‘Campaigns watch’ tackles hate
    Edward Fawcett 020 7696 5509
                                          crime. ‘Campaigns watch’ is one of the changes you might notice
    Ewen Cook 020 7696 5534
                                          in this issue of Viewpoint. We’ve made a few adjustments
    For editorial, advertising and        following our reader survey – turn to page 30 to find out more.
    subscription enquiries:
    Tel 020 7696 5509
    Email           Claire McMinn
    Write to Viewpoint, Mencap, 123       Editor
    Golden Lane, London EC1Y 0RT

    Viewpoint is published six times a
    year. To subscribe turn to page 39.

    The views and opinions expressed
    in Viewpoint do not necessarily
    represent those of Mencap.

    Charity number 222377 (England,
    Northern Ireland and Wales);
    SCO41079 (Scotland)
    ISSN 1358-6076                                                                                      16-19
    Printed by Aldridge Print Group.
    The paper is 100% recycled and
    was manufactured using
    environmentally friendly
    processes. More than 95% of
    waste products from the printing
    process were recycled.

    On the cover:
    Josie Scantlebury photographed
    by Layton Thompson


4                                                                                      Viewpoint March/April 2010
The X factor Why people with a learning disability should vote - Forced marriages

Jail for marriage scam brother
Man convicted for plot to sell his disabled sister into marriage
Michael Wright, 22, from             Chinese immigrant Ligang          to exploit a member of his
Swindon has been jailed for          Qiao, 29, whose visa was          own family for his own
four years for trying to force his   about to run out.                 financial gain,” said detective
sister into a sham marriage.            Wright had hoped to            inspector Andy Cummins of
    In August last year, Wright      receive £8,000 for his part in    the UK Border Agency. “His
accompanied his sister, who          the plot. Instead, he and Qiao    motive was purely greed.”
has a learning disability, to        were arrested after a registrar
Reading Register Office. He had      became suspicious.                See News focus on pages
arranged for her to marry               “Michael Wright attempted      14-15

Autism strategy launched
New plans to help adults with autism to live independently
An autism strategy, Fulfilling
and rewarding lives, was
published on 3 March by the
Department of Health. The
strategy aims to help adults
with autism in England to find
work and lead independent
lives by making changes to
public services.
    Currently, 15% of people         Hope said: “This strategy will    potential to make a direct
with autism have a job, and          start a fundamental change in     impact on the lives of people
49% live at home with their          public services.”                 with a learning disability who
parents. Although autism is              The strategy is backed by     also have autism. However, as
not a learning disability, a         the Autism Act 2009, which        learnt through the learning
2005 National Audit Office           requires local authorities to     disability strategies Valuing
report found that around half        collect and share information     People and Valuing People Now,
of people with autism also           about people with autism and      implementing such plans can
have a learning disability.          aims to improve local planning    prove difficult. There needs to
    The strategy includes            and delivery of services.         be a real commitment to see
plans for a national autism              Esther Foreman, Mencap’s      this through.”
programme board to lead the          campaigns manager, said:
changes, guidance on making          “Mencap welcomes the autism           Go to
public services accessible, and      strategy, which has the           dh_113369
autism awareness training for
Jobcentre Plus staff. It also
sets out a programme to
                                     Key point
develop training for health and
social care staff – supported by
                                     • There are new government plans to
a £500,000 investment.                  improve services for people with autism.
    Care services minister Phil

Viewpoint March/April 2010                                                                               5
The X factor Why people with a learning disability should vote - Forced marriages

Snap! gets active
A new theme for Mencap’s photo
and film competition
Snap!, Mencap’s photo and film competition, is
this year focusing on sport and getting active.
    “The competition showcases the artistic
talents of people with a learning disability
through photography, film and inspiring stories,”
explains Gemma Kelly, Snap! project manager.
“This year, following the end of the Paralympic
ban, we are asking people to comment on sport
                                                          Go to from 22
or other ways to get active.”
                                                      March. To request a postal application form
    People with a learning disability had been
                                                      please call Gemma Kelly on 020 7696 5524
banned from the Paralympics since 2000. But
the ban was lifted in November 2009.
    Snap! winners will receive a digital camera        Key points
or photography vouchers, thanks to FujiFilm UK
Ltd and the Sorrell Foundation. They will also be      • Snap! is Mencap’s photo and
invited to an awards ceremony in London.
    The closing date of the competition is 21
                                                          film competition.
June 2010 and the winners will be announced
in August. The winning entries will be shown at
                                                       • You can send in photos or films
an exhibition at a London gallery and then go             about sport and getting active.
on tour across the UK.

Calls for single act for adult social care
Law Commission says current legislation is confusing and expensive
Laws covering adult social care in England and        assess individuals’ needs and a duty for all
Wales need simplifying, according to a                councils to provide services to those who are
consultation paper from the Law Commission.           eligible. The Law Commission is also calling for
    The Law Commission, which advises the             a single duty on councils to assess the needs of
government on law reform, is suggesting a             carers and a duty to investigate when abuse or
single law to replace the current legal               neglect is suspected.
framework. It says that this would make the               Frances Patterson QC is the law commissioner
adult social care system easier to understand         leading the project. She said: “It is unacceptable
and save public money.                                that people should have to look at more than
    Currently, the laws that govern eligibility for   38 Acts of Parliament, plus thousands of pages
services, the assessment of individuals’ needs        of guidance, to work out what the system is for
and the way services are provided are spread          delivering these essential services.”
across 38 different Acts. Many services are still         The Law Commission’s consultation closes
delivered under an Act dating from 1948.              on 1 July.
    The proposals include a clear set of principles
to guide social care decisions, a single duty to          Go to

6                                                                              Viewpoint March/April 2010
The X factor Why people with a learning disability should vote - Forced marriages

Controversy over social care
Personal Care at Home Bill widely criticised as learning disability
community awaits the social care white paper

The government’s plan to provide free home          England, as outlined in last year’s green paper
care for people with the highest needs in           Shaping the Future of Care Together.
England and Wales has attracted criticism               This wider social care agenda has also been
across parliament, local government and the         the subject of fierce debate recently, with the
social care sector.                                 Conservatives accusing Labour of planning a
    The Personal Care at Home Bill outlines plans   compulsory insurance scheme for social care
to guarantee free personal care for around          funded by a £20,000 ‘death tax’.
280,000 people and provide support for another          While it is unclear whether the Personal Care
130,000 to regain their independence. The row       at Home Bill will become law before the general
over the Bill has dominated headlines recently      election, health secretary Andy Burnham said in
and magnified the debate over plans for the         January that the government does intend
wider reform of adult social care in England.       to produce its white paper following on from
    The policy, which will mostly benefit older     Shaping the Future of Care Together before then.
people, will cost around £670 million a year –          Mencap and other learning disability
with councils expected to provide £250 million      organisations had expressed concerns that
through efficiency savings. However, the plan       the green paper does not address the future
has been criticised in the House of Lords as        funding crisis for services for people with
‘seriously flawed’ and the Association of           a learning disability.
Directors of Adult Social Services suggested            However, at a major care and support
the cost to local authorities would be closer       conference in February it was agreed that the
to £500 million.                                    vision for the National Care Service should give
    David Congdon, Mencap’s head of                 ‘more emphasis to the importance of including
campaigns and policy, said: “We have very           adults of working age’.
serious concerns that the proposed efficiency
savings are unrealistic and could ultimately
result in cuts to other services for people with     Key point
a learning disability.”
                                                     • The government says it will
Social care white paper imminent
The Personal Care at Home Bill is intended by
                                                        publish new plans for social
the government to be the first step towards             care soon.
establishing a new National Care Service in

Viewpoint March/April 2010                                                                         7
The X factor Why people with a learning disability should vote - Forced marriages

The right to vote
Events in Westminster, Northern Ireland and Wales address
the coming election
A recent meeting at the House of Commons
addressed ways to make elections accessible
for disabled people.
    The meeting on 9 March brought together
the All Party Parliamentary Groups for learning
disability, autism, eye care and visual
impairments, and disability. It included
speeches from Jenny Watson, chair of the
Electoral Commission, and John Bercow,
Speaker of the Commons. He said: “Each and
every disabled person who has the right to vote
should exercise that right.”
    So far over 130 MPs have signed the Early
Day Motion on accessible politics, put forward
by Mencap’s Get my vote campaign.
                                                      ommitment to disabled children
    Meanwhile, Mencap in Northern Ireland
                                                    The Every Disabled Child Matters campaign
hosted an event at Stormont on voting rights
                                                     is asking all political candidates to make a
(pictured right). And in Wales, Mencap’s Partners
                                                     commitment to disabled children and
in Politics team is planning a series of hustings
                                                     their families.
(political campaigning events).
                                                         It wants candidates to sign up to its
                                                    Constituency Pledge, with five commitments,
    For more information about the hustings
                                                    including regular meetings with disabled
in Wales please call 0808 8000 1111
                                                    children and families in their area. The pledge
                                                    is backed by 40 disability organisations.
For more on voting rights and resources turn to
                                                     Go to
pages 20-23

More training for special education
Support for trainee teachers working with severely disabled children
This March, schools minister Ed    six-month training course aims    students, but has indicated
Balls announced new                to encourage more trainee         that it will only provide 95% of
measures to support trainee        teachers to work with children    funding this year, and 69% the
teachers who want to work          with profound disabilities.       following year.
with severely disabled children.       Meanwhile, the Welsh              Liz Neal, director of Mencap
    A partnership with Teach       Assembly Government has           Cymru, said: “People are
First will give trainee teachers   indicated that there may be       struggling to prepare for work
first-hand experience of           cuts for post-16 students in      through that period. We are
working with disabled children     special schools in Wales.         very concerned to hear that
in special schools. And a new      It used to fully fund such        there may be cuts in funding.”

8                                                                            Viewpoint March/April 2010
The X factor Why people with a learning disability should vote - Forced marriages

Pair jailed for murder of                                              Promotion of
                                                                       personal budgets
vulnerable man                                                         ‘inadequate’
Andrew Gardner’s killers jailed as                                     Councils failing to offer
                                                                       information to disabled
government promises new law to protect                                 people
vulnerable adults
                                                                       Local authorities are failing
Two people who tortured and                                            to provide vital information
murdered a man with a                                                  on personal budgets for
learning disability were jailed                                        disabled people, according to
for life on 22 January.                                                new research.
    A jury at Teesside Crown                                               According to the delivery
Court heard that Andrew                                                plan for Putting People First,
Gardner, 35, was starved,                                              all English councils should be
beaten and tortured for several                                        offering personal budgets by
weeks by his partner Clare          adults who are abused have         April this year and 30% of
Nicholls, 28, along with her        quick and easy access to the       people eligible for social care
brother and boyfriend. Before       people who can help them best.     support should have one by
his death in March 2008 he              Esther Foreman, Mencap’s       April 2011.
had suffered more than              campaigns and policy manager,          But when a mystery
150 wounds.                         welcomed the government’s          shopper for disability charity
    The trial ended shortly after   commitment to new                  Livability contacted 103 local
a government announcement           safeguarding laws, but said        authorities they found that
that new legislation will be        urgent action is needed.           almost half (45%) of local
introduced to strengthen            “We are appalled and               authority websites had no
protection for vulnerable adults.   saddened to see that, yet          information at all on
                                    again, a vulnerable adult with     personal budgets. Almost
Safeguarding Adults Boards          a learning disability has been     half of telephone enquiries
Care services minister Phil Hope    forced to live in misery, and      were misdirected.
said on 19 January that it will     ultimately had his life taken by       Mary Bishop, chief
be a legal requirement for          his tormentors.                    executive of Livability, said:
every local area in England to          “This new tragedy calls to     “Personal budgets have the
have a Safeguarding Adults          mind the recent deaths of          potential to transform the
Board, with representatives         Steven Hoskin and Brent            lives of disabled people by
from social services, police,       Martin, also victims of horrific   giving them choice and
the NHS and all other groups        abuse. The government must         control and yet awareness
involved in protecting              ensure that proposed               of them is woefully
vulnerable adults. The boards       legislation becomes a reality to   inadequate.”
must ensure that vulnerable         stop this happening again.”            The City of London and
                                                                       Portsmouth City Council were
                                                                       the only councils to score ten
 Key point                                                             out of ten for the information
                                                                       they provided.
 • A man with a learning disability was killed
                                                                           Go to www.livability.
    by his partner.                                          

Viewpoint March/April 2010                                                                          9
The X factor Why people with a learning disability should vote - Forced marriages

Isle of Wight cuts trigger protests
Demonstrations against plans to cut learning disability services
There were angry protests on        the Supporting People budget       co-ordinated the protests, said:
the Isle of Wight this February     to help people transfer to         “What they definitely should
when it became clear that           new services.                      have done is to have consulted
services for people with a              Despite good practice          with people with a learning
learning disability could be cut.   guidance issued in the             disability and the people it’s
    The protests centred            government’s Valuing People        going to affect.”
around the council’s budget         Now strategy, the local               This March, the BBC
plan for the next three years.      learning disability partnership    published findings from a
This includes about £4 million      board only found out about the     questionnaire sent to English
of cuts to social care services,    planned cuts when members          councils. Of the 93 that
including the closure of a day      saw a questionnaire on the         responded, all but two
centre and the reduction of         council website.                   expected cuts of 10-15% over
respite care services.                  Protests were held outside     the next three to five years. Of
    Councillors have now            the council offices, with around   the 60 that speculated where
confirmed that the cuts will go     140 people with a learning         cuts might take place, half
ahead for 2010-2011, although       disability, parents and carers     admitted that social services
they offered £750,000 from          turning out. John Phillips, who    are particularly vulnerable.

Inclusive first aid training
Hundreds of people with a learning disability have been given
life-saving training by the British Red Cross
                                    The IFA project began in           for injuries, made sure she was
                                    September 2006 and provided        breathing and put her in the
                                    training to over 5,500 disabled    recovery position. First aid
                                    people before it ended in          trainer Martin Frizzell said:
                                    December 2009. Training took       “We’re proud to have trained
                                    place at sites across the UK.      David and his actions prove
                                        David Morton (pictured),       that everyone can be a
                                    who has a learning disability,     potential life-saver.”
                                    put his training to good use.          Although the funding for
                                    While volunteering in Northern     IFA has now ended, the British
                                    Ireland, he came across an         Red Cross aims to continue
                                    elderly woman who had              first aid training for people with
                                    suffered a seizure. He checked     a learning disability.

Around 1,500 people with a
learning disability have
                                    Key point
received first aid training from
the British Red Cross as part
                                    • Lots of people with a learning disability
of the three-year Inclusive First      have been given first aid training.
Aid (IFA) project.

10                                                                             Viewpoint March/April 2010

Basildon Hospital officials plead guilty
NHS bosses admit safety failures that led to death of Kyle Flack
Officials from Basildon University Hospital in
Essex have pleaded guilty over failures that led
to the death of 20-year-old Kyle Flack, who had
a learning disability.
     Kyle, 20, died from asphyxiation in October
2006 after his head became stuck between the
bars of his hospital bed. The jury at an earlier
inquest concluded that his death was
contributed to by neglect.
     The Health and Safety Executive had
prosecuted Basildon University Hospital for              eview of care of people with a learning
failing to adhere to health and safety laws.            disability in Cornwall
Hospital officials entered their guilty plea at        Royal Cornwall Hospitals Trust has been asked
Basildon magistrates’ court on 26 February and          to examine its care of patients with a learning
sentencing is due in March.                             disability after a man with Down’s syndrome
     Mark Goldring, Mencap’s chief executive, has       died three months after being admitted to
called for urgent changes to ensure that people         hospital with a fractured ankle.
with a learning disability receive equal access            William Peter Menear from St Austell died in
to healthcare.                                       	2009, after deep vein thrombosis, caused by
     “Parts of the NHS are trying hard but we           the ankle fracture, led to a blood clot. He had
want to see all commit to ensure people with            refused treatment by injection due to his fear
a learning disability receive the best possible         of needles.
healthcare. We want the sentence to send a                  The coroner, Mr Cox, said: “There could
very powerful and clear message to all health          have been a little better joined-up thinking
professionals that indifference to people with a       between agencies involved in the care of
learning disability must stop now.”                    Mr Menear.”

Learning Disability Week 2010
Health campaigns packs available soon
Learning Disability Week is this year focusing on    trusts and hospitals to sign up to the Getting it
the Getting it right campaign.                       right charter, to show their support for change
    Mencap’s Death by indifference report            in the NHS. Members of the public will also be
revealed that failings in the NHS led to people      encouraged to sign up to the campaign and
with a learning disability dying unnecessarily.      take part in events.
Getting it right is the next part of this campaign       Getting it right campaign packs will be
and has been developed with many of the Royal        available from the end of April, including tools
Colleges, including the Royal College of             like posters and petitions.
Medicine, the Royal College of General
Practitioners and the Royal College of Nursing.         To sign up to receive a pack go to
    During Learning Disability Week (Monday 21 or call Mencap’s
to Sunday 27 June) Mencap will ask health            campaigns team on 020 7696 5613

Viewpoint March/April 2010                                                                           11

News in brief                   End the ‘r-word’
Unpaid family carers who
care for someone for more
                                Channel 4 in ‘retard’ controversy as
than 20 hours per week will     worldwide awareness campaign grows
soon be able to build up a
full basic state pension. A     A movement to end the use of the term ‘retard’ took a step
new Carers Credit is being      forward on 3 March, with an awareness day for the campaign
introduced on 6 April 2010.     Spread the Word to End the Word.
Go to            Created by students in the USA and supported by the Special
pensions                        Olympics and Best Buddies International, the campaign is asking
                                people to pledge their support to eliminate the ‘r-word’, and has
Disabilities minister           achieved over 100,000 pledges.
Jonathan Shaw has                   Over 200 organisations are backing the Spread the Word to
announced that from April       End the Word campaign. “Most people don’t think of this word as
this year, 2,000 people with    the language of hate, but that’s exactly what it feels like to
a learning disability will be   millions of people with intellectual disabilities, their families and
guaranteed places on the        friends,” said Scrubs actor John C McGinley, an ambassador for
Access to Work programme        the campaign.
to help them stay in work.          The issue hit the headlines in the UK in February when
Go to        Channel 4 received complaints after celebrities Vinnie Jones
disability                      and Davina McCall used the term live on E4’s Celebrity Big
                                Brother’s Big Mouth.
The Court of Appeal has             Ofcom said that, in this case, the use of the term was
upheld a High Court ruling      ‘justified by the context’. But a Mencap poll found that 61%
that Cornwall Council had       of Channel 4 viewers find the word ‘retard’ offensive.
unlawfully asked a man with
a learning disability to pay        Go to
for his adult care services.
The decision could lead to
refunds for around 200
                                 Key point
people in Cornwall.
                                 • A campaign is working to stop people using
The first Changing Places           the word retard.
toilet in an airport opened
recently at George Best
Belfast City Airport, in
Northern Ireland. Go to          Sporting champions
                                                                   Special Olympics Great Britain
                                                                   (SOGB) held its 2009 Volunteer
A third of parents with
                                                                   of the Year awards at the House
disabled children don’t get
                                                                   of Commons in February. The
the support they need for
                                                                   awards recognised the 2,600
their children’s emotional or
                                                                   volunteers who support the
mental health problems,
                                                                   SOGB’s programme of sports
according to a survey by
                                                                   opportunities for people with
charity YoungMinds. Go to
                                                                   a learning disability.

12                                                                          Viewpoint March/April 2010
Parliamentary watch

                       Campaigns watch
                       By Richard Lawrence, spokesperson and research assistant, Mencap

Speaking up about hate crime
In this new Viewpoint feature we ask a campaigner to give their take
on a key issue facing the learning disability community. Here,
Richard Lawrence shares his thoughts on hate crime
I don’t think enough is being        – don’t be ashamed, feel           [Fiona Pilkington killed herself
done to tackle disability hate       confident to say what              and her disabled daughter
crimes, because the police           has happened.                      after years of harassment by
don’t understand people with             It’s important to tackle       local youths.] People were
a learning disability. They need     hate crimes to stop bad things
more training to understand          happening and not become a         “It can make you feel
what it’s really like.               victim. Hate crime can have a       helpless, ashamed,
    About ten years ago I was        big effect on victims. It can       distraught”
attacked by a gang of boys. I        make you feel helpless,
feel they attacked me because        ashamed, distraught, paranoid.     saying it was dealt with poorly.
they were racist and because             Some recent events have        The aim of the day was to
of my learning disability. I saw     made me more positive about        work out what we could do to
a police officer and he just told    the police. In January I went to   help people with a disability
me to stop messing around. I         visit a police station in          feel safer and be safer.
lost my respect for the police       Bedfordshire with colleagues           The Crown Prosecution
then. Sometimes even now             at Mencap. We talked about         Service says that in 2008-2009,
when I go out with my                hate crimes and people with a      299 people were found guilty
girlfriend there’s trouble.          learning disability. I felt the    of hate crime. The year before
    I don’t think people with a      police understood what we          just 141 were found guilty. I
learning disability report hate      were saying and how it’s           think this shows that disability
crime enough. They think the         difficult for people with a        hate crime is being taken more
police won’t believe them or         learning disability.               seriously. But there’s still a lot
they might be discriminated              Then in February I went to     of work to do around stopping
against. Some people with            a hate crime action planning       hate crimes against people
more profound learning               day. People from the Met           with a learning disability.
disabilities would not be able       police, the Crown Prosecution
to explain what has happened.        Service (who take cases to             Go to
    My advice to anyone going        court), other charities and        uk/hatecrime or call the
through this is to speak to your     Mencap were there. We talked       Learning Disability Helpline
family or friends. Speak up          about the Pilkington case.         on 0808 808 1111

 Key point
 • Richard Lawrence thinks people with a learning disability should
   report hate crime if it happens to them.

Viewpoint March/April 2010                                                                            13
News focus

 Forced into
             Forced marriages are a growing concern in the UK. And,
             reports Andrew Cole, people with a learning disability
             are particularly vulnerable

                       Swindon man’s attempt to sell       has not given informed consent. “And
                       his sister into a sham marriage     of course people with profound
                       hit the headlines recently.         disabilities are going to be most at risk
             Michael Wright offered to sell his sister,    because they are unable to explain
             who has a learning disability, to a           what’s happening,” says Rachael
             Chinese immigrant, Ligang Qiao, who           Clawson of the Ann Craft Trust, which
             needed to be married to stay in the           campaigns against abuse of people
             country, as his visa was about to run         with a learning disability.
             out. Wright would have received £8,000            Parents may see marriage as a way
             if the marriage had gone ahead, but           of providing a carer for a son or
             fortunately it was thwarted just in time.     daughter with a learning disability they
                  Sadly, recent figures on forced          feel unable to cope with. Mandy
             marriages in the UK show that this was        Sanghera, an expert in the field and a
             not an exceptional case. In 2008 the          former trustee of Voice UK, explains:
             government’s Forced Marriage Unit             “If you don’t have a significant learning
             dealt with 420 cases of forced                disability you will not meet the local
             marriage, more than double the figure         authority [eligibility] criteria so there’s
             for two years before.                         no way you’re going to get a service.
                  A spokesman for the unit said it         Families think ‘we can’t continue to do
             encounters a number of cases each             this caring role’ and that’s when they
             year where people with disabilities were      start considering a spouse to take on
             compelled to marry. “Accurate                 that role.”
             statistics for forced marriage are very           As the Swindon court case
             difficult to compile, given its often-        demonstrates, forced marriages can
             clandestine nature, but the incidence         take place in any culture. But most
             among people with disabilities has            reported cases in the UK involve
             been the subject of increasing concern        families from south Asian communities.
             over recent years.”                           Significantly, according to a 2001 report
                                                           from the Department of Health, the
             Informed consent                              prevalence of learning disability in these
             So why are people with a learning             communities is up to three times higher
             disability particularly at risk? Cases like   than the average.
             that of Michael Wright’s sister represent         In addition, in cultures that put a
             forced marriages because the individual       high premium on marriage the pressure

14                                                                          Viewpoint March/April 2010
News focus

to ‘marry off’ someone with a learning     And given that the trigger for a forced
disability can seem irresistible. Mandy    marriage may be parents’ inability to
Sanghera estimates that as many as         continue caring for their son or
10% of adults with a learning disability   daughter, agencies must make every
from black and minority ethnic             effort to inform families about what
communities may have been through          services are available. “There is a need
a forced marriage.                         for more culturally appropriate services
    The consequences can be                and for services to be advertised in a
horrendous. Individuals with a learning    better way,” she says.
disability can easily become the victims       Some of the warning signs to look
of sexual assault and violence, or         out for, according to the Forced
abandoned. And such a union can            Marriage Unit’s guidelines, are young
amount to a double forced marriage if      people being taken out of school or
the spouse is not aware that they are      college for an extended period, reports
expected to become a carer.                of domestic abuse, siblings going
                                           missing and even attempted suicide.
Tackling the problem                       If there are serious concerns, agencies
The establishment of the Forced            should contact the Forced Marriage
Marriage Unit in 2005 and the Forced       Unit, social services or even the police.
Marriage (Civil Protection) Act in 2007        “Professionals have got to be
(allowing courts to make orders to         prepared to challenge,” says Mandy
protect victims) demonstrates a            Sanghera. “There’s nothing religious or
growing recognition of the problem. But    cultural about forced marriage. It’s an
some are still concerned that people       abuse of a person’s human rights.”
with a learning disability may not be
getting the protection they need.              Go to and
    The Forced Marriage Unit has 
funded research by the Ann Craft Trust     abroad/when-things-go-wrong/
and the Judith Trust on what is            forced-marriage/ or call the Forced
happening in this area. The findings,      Marriage Unit Helpline on 020 7008
which are expected to be out later this    0151
year, will “inform the unit’s future
work,” said a spokesman.
    One of the most important
                                            Key points
safeguards, in Rachael Clawson’s view,
is wider awareness of the problem.
                                            • Some people with a learning disability
“One of our main concerns is that fears       are forced to get married.
of being culturally insensitive
sometimes seem to override concerns         • This is an abuse of their rights.
about protection.”

Viewpoint March/April 2010                                                                     15
Viewpoint focus

Valuing People
Now: one year in
It’s now one year since the government published its revised plans
to improve care and rights for people with a learning disability.
Edd Fawcett reports on the progress of Valuing People Now

        lot can happen in a year.     disabilities, along with co-          were introduced following the
        January 19 marked one         national director Scott Watkin.       original Valuing People white
        year since the                    Williams admits that not          paper to co-ordinate the
government published Valuing          every target for the first year       planning and development of
People Now – its three-year           has been ticked off, but is           its objectives at local level.
strategy for learning disability      nonetheless pleased with the          However, they were often
services in England.                  progress so far. She says that        criticised for being ineffective
    The strategy was published        one of her main priorities was        and only involving people with
along with a delivery plan in a       to raise awareness of Valuing         a learning disability and carers
bid to update the 2001 Valuing        People Now, particularly beyond       in tokenistic roles.
People white paper. It reflected      the social care sector. “I think          Addressing these criticisms,
the government’s drive towards        we’ve made a good start,              Valuing People Now set in place
the personalisation of social         people have said that it’s the        a new structure to share
care services, setting aims           right strategy.”                      information between local and
around housing, education,                She warns that while the          national level. The last year has
hate crime and family.                plans are ambitious, people           seen the introduction of nine
    One year into the three-year      shouldn’t expect dramatic             regional learning disability
plan, it seems that some              changes just yet. “You can’t do       programme boards to oversee
progress has been made,               it all in a year, and a lot of this   local work. And Valuing People
although experiences differ           year has been about getting           Now says that each partnership
across the country.                   the processes and the best            board must produce an annual
    “We have seen real                practice [in place].”                 report, signed off by the
commitment at the national                                                  members with a learning
level to make Valuing People          Strengthening partnership             disability. The first reports are
Now deliver, and there have           boards                                due in March.
been some encouraging signs,”         A key aspect of Valuing People            Lee Scott has a learning
says Esther Foreman, Mencap’s         Now was its plans to                  disability and is co-chair of his
campaigns manager. “We now            strengthen learning disability        local partnership board in
hope that the strategy can            partnership boards. The boards        Burnley, Lancashire. He says
really deliver at the local level.”   usually consist of people with a      that the measures have
    Leading on Valuing People         learning disability, carers,          improved the effectiveness of
Now is Anne Williams, the             service providers and local           his board. “It has improved
national director for learning        authority representatives. They       quite a lot – people have got

16                                                                                  Viewpoint March/April 2010
Viewpoint focus

                                   “It has improved quite a lot – people have got
                                     their voices louder now”

their voices louder now.” Scott    Meanwhile, the National             living placements for their sons
says that by signing off the       Valuing Families Forum has          and daughters, and that day
annual report, he is at the        worked on projects including        services are being provided only
centre of the process.             work to support older families      to those with the highest
    But some disagree. John        and people with a learning          support needs. “Unless there’s
Hutchison lives in Abingdon,       disability who are carers. And      more money coming from
Oxfordshire, with his wife and     NAGLDE works to deliver the         central government to allow
son, Daryl, 40, who has a          views of black and minority         local authorities to meet the
learning disability. While there   ethnic (BME) and newly-arrived      vision of Valuing People Now,
are six people with a learning     communities.                        I don’t think it can really
disability on their local              The national director is        achieve anything.”
partnership board, he is           encouraging the three forums             One area that is going in
concerned that they may be         to work together more. Oi Mei       the right direction is access to
coerced into signing off           Li, Mencap’s ethnicity lead and     health services. Last year’s
the annual report, whatever        NAGLDE member, said:                publication of Valuing People
its contents.                      “Bringing us together is            Now was pushed back by
    Since 2001, the Office of      promising and a commitment          several months to give the
the National Director has also     to strengthen these                 Department of Health time to
kept abreast of issues affecting   relationships should ensure         respond to Sir Jonathan
the learning disability agenda     that BME communities are less       Michael’s Healthcare for All
through three dedicated            marginalised and their needs        report – a direct response
forums: the National Forum         taken into consideration.”          to Mencap’s Death by
for People with Learning                                               indifference campaign.
Disabilities, the National         Changes at local level?                  Valuing People Now set out
Valuing Families Forum and         John Hutchison says Valuing         a programme to address each
the National Advisory Group        People Now has resulted in little   of Sir Jonathan Michael’s ten
for Learning Disability and        change and that “stealth cuts”      recommendations. As a result,
Ethnicity (NAGLDE).                remain the overarching              the government has
    Over the last year, the        problem. “One year on, I would      committed to set up a public
National Forum for People with     say that nothing’s changed.”        health observatory on learning
Learning Disabilities has              Speaking from experience,       disability, issue guidance on
focused on health, advocacy,       he says that elderly carers are     health action plans and
community lives and transport.     struggling to find supported        implement health >>

Viewpoint March/April 2010                                                                         17
Viewpoint focus

self-assessment frameworks        She also points out that work       government followed up
for health trusts and learning    to close the last remaining NHS     Valuing People Now with
disability partnership boards.    campus accommodation by             Valuing Employment Now. This
    Valuing People Now also       the end of 2010 is largely on       cross-government strategy
promoted annual health checks     track. She says that some final     aims to bring the employment
for people with a learning        arrangements might mean             rate of people with a learning
disability. They were initially   that a handful of people            disability up to that of disabled
due to run from 2009-2010,        remain in the campuses              people overall – currently
but it was announced this         beyond the deadline, but that       around 48%.
January that they will be         this is only to get things right        The employment strategy
extended until March 2011.        for the individual.                 proposed plans to deliver more
    While the extension to 2011                                       job coaching, increase transport
has been welcomed, annual         The right jobs                      to work training and pilot
health checks could be patchy,    Along with housing choice and       internship schemes. A resource
as GPs have a payment             access to healthcare, Willams       pack to promote the key
incentive to carry them out,      says that employment is key to      messages of the strategy was
rather than being required to     promoting inclusion. She            due in 2009 but has been
do so through legislation.        describes employment rates for      pushed back until this spring.
    Anne Williams admits that     people with a learning disability       This January, Anne Williams
the situation has varied across   as “shockingly low” at just         and Scott Watkin wrote an
England. “Some areas have         7.5% in 2008-2009. She              open letter to local health and
been slower to get started than   blames this on low                  social care chiefs. They called
others, but we are now seeing     expectations of people with a       for public services to lead by
a steady increase in the          learning disability and says that   example and employ more
number of annual health           changing these attitudes could      people with a learning
checks and we will want a         take up to a generation.            disability. “Investment into
higher uptake next year.”             In June last year, the          supported employment is a

18                                                                            Viewpoint March/April 2010
Viewpoint focus

                                      Valuing People Now priorities for 2009-2010

                                    • Raise awareness of Valuing People Now
                                      A resource pack was published in March 2009.
                                    • Improve effectiveness of learning disability
                                      partnership boards
                                      People with a learning disability and family carers are now
                                      more involved with local partnership boards. A guidance
                                      pack for partnership boards was published in November
                                      2009 and annual reports from partnership boards are
                                      required from March.
                                    • Improve access to healthcare
                                      The government has committed to setting up a public
                                      health observatory on learning disability, and to publish
                                      guidance on health action plans. Annual heath checks in
                                      England have been extended until March 2011.
                                    • Increase housing options and close NHS campuses
                                      The closure of the last NHS campuses by the end of this
                                      year is largely on track. Future work is likely to focus on
                                      housing options for the 33,000 people with a learning
cost-effective alternative to
                                      disability who live in residential care.
day services,” it noted.
     Eight years on from the        • Embed the personalisation agenda in council services
original Valuing People white         The Department of Health has sent out guidance on person-
paper, Valuing People Now set         centred planning for people with a learning disability. Work
itself some ambitious targets.        is ongoing to promote personalisation in local services.
And overall the work of its first
                                    • Increase job opportunities
year has been positive. The
                                      Valuing Employment Now was published in June 2009. This
learning disability community
                                      January the national director for learning disabilities called
now hopes that the
                                      for the public sector to offer more jobs to people with a
groundwork of this past year
                                      learning disability.
will lead to significant change,
and that the momentum of
Valuing People Now, along with
its funding, isn’t lost.
                                     Key points
     Go to www.
                                     • The government made plans for learning
Mencap has produced                    disability services a year ago.
factsheets on the key topics
set out in Valuing People Now.       • Lots of things set out in the plans have
Go to

Look out for regular updates
                                     • But some of the plans are taking longer
on Valuing People Now in               to happen.
future editions of Viewpoint

Viewpoint March/April 2010                                                                             19



                                                           running a three-year project funded by the
        The 2010 general election will take                Electoral Commission. Every Vote Counts is
        place in a matter of months. Ewen                  aiming for a 40% turnout for people with a
                                                           learning disability in the forthcoming election.
        Cook explains why it’s never been                      Together, Mencap and United Response have
        more important for people with a                   put forward an Early Day Motion (EDM), a
                                                           parliamentary tool to help ensure that MPs and
        learning disability to use their                   political parties get the accessibility message.
        vote, and their voice                              “So far, over 130 MPs have signed up to support
                                                           the EDM,” says Peter Hand, Mencap’s senior

                K general elections give people with a     parliamentary officer. However, the task facing
                learning disability, their families and    learning disability charities is a daunting one.
                carers a chance to help choose who         “Even parliament’s own education and outreach
        should govern society. Yet back in May 2005,       unit has only recently committed to producing
        when the last election took place, just 16% of     four easy-read guides in time for the election,”
        people with a learning disability who were         says Peter. “And there aren’t any fully accessible
        eligible to vote actually did so – compared with   Changing Places toilets in the parliamentary
        61% of the general population.                     buildings at Westminster.” The problem, it
            This disparity could have been avoided.        seems, stretches right to the very heart
        Recent research by Mencap and United               of government.
        Response has shown that many people with a             However, this is all the more reason to be
        learning disability were excluded from the         ambitious. “People with learning disabilities are
        democratic process for specific reasons. A lack    so often underestimated,” says Su Sayer, chief
        of accessible material, complex language, and a    executive of United Response. “Just 20 years
        low awareness of their legal right to vote meant   ago, it was seen as nearly impossible that they
        that at least half a million people with a         could live independently, let alone get a job or
        learning disability failed to have their say.      play a full role in their communities. And yet
            As Viewpoint went to press the election date   many now do all three. We have to be equally
        hadn’t been announced, but it was expected in      ambitious about voting – beginning with the
        May. And this time the learning disability         target of a 40% turnout.”
        community is determined to make its voice
        heard. In November 2009, Mencap launched           Getting involved
        Get my vote, a campaign calling on the political   There are now more resources than ever to
        parties to produce easy-read versions of their     support people with a learning disability and
        manifestos and prospective MPs to make their       their families and carers to get involved in the
        campaigns as accessible as possible.               election (see box opposite). And the stakes are
            The campaign reinforces the work of            high – the 2010 general election is set to be one
        disability charity United Response, which is       of the most pivotal of recent times for the

        20                                                                          Viewpoint March/April 2010

learning disability community. Budgets are likely   Crucially, by participating in the democratic
to be cut whichever party wins – which means        process, people with a learning disability are not
tough times lie ahead for all those who need        just using their vote but, more importantly, their
care and support.                                   voice. “More people should vote, of course, but
    “It is vitally important that the much needed   they should also meet with their MPs to explain
reform of our social care system – particularly     what they want as constituents,” concludes Su
for disabled people of a working age – does not     Sayer. “People should get involved on a local
get lost in the business of the new parliament,”    level – talk to their councillors or stand as
says Peter Hand. “It’s our job to make that clear   councillors. Only when people with a learning
to MPs. We must use the general election            disability are fully involved in the democratic
to make our views known, as it will be a            process will they have their rightful say in this
springboard to continue lobbying in the future.”    country’s future.”

Use your voice: get registered, get voting!
 Get my vote                        About my vote
Go to           The official website on voting
getmyvote to download              from the Electoral Commission
Mencap’s easy-read guide to        is at
voting and to ask your MP to       It is not easy read, but provides
sign the Early Day Motion          a comprehensive guide to
calling for political parties to   registering to vote, postal
make their election material       voting, polling stations, how to
accessible. Mencap is also         choose who to vote for, and
distributing pledge cards for      why you should vote.
people to send to their MP –
copies are included with this
                                    Every Vote Counts
issue of Viewpoint.
                                   United Response’s www.
                          is an
 Promote the Vote
                                   easy-read site with stories,
Before you can vote you must
                                   videos and resources. It
be registered. The website
                                   contains a wealth of
                                   information on how
was designed by people with a
                                   democracy, politics,
learning disability and Easy
                                   elections and voting work.
Read Online, and has step-by-
step guides on how to vote.
                                    They Work for You
                                   Find out the name of your MP
 Polls Apart
                                   and how to contact them at
Polls Apart is Scope’s campaign
to improve the accessibility of
polling stations. In 2005, Scope
surveyed over 2,000 polling         Be an MP!
stations and found that 68% of     Try being an MP for a week in
them could be inaccessible to      this game from parliament’s
a disabled person. Go to           education service. Go to    

Viewpoint March/April 2010                                                                         21

Party politics:
the main parties speak to Viewpoint

                Conservative MP Mark Harper,
                shadow minister for disabled people
               It is vital that everyone, regardless of whether they have a disability or
               not, should be encouraged to make their voice heard and use their vote.
               The Conservative party will make a summary of the 2010 general
               election manifesto available on request in a range of accessible formats,
               including easy read. One of the key policy priorities in our manifesto will
               be our bold plans to tackle Labour’s jobs crisis through a single
               integrated work programme, which will offer targeted and personalised
               support to help disabled people to move off benefits and into work.

                Labour MP Jonathan Shaw,
                minister for disabled people
               Everyone’s vote has a value, the same value, and we must make sure
               that everyone uses it. It is very important that we produce accessible
               information for everyone. It is the responsibility of all the political parties
               to make sure they do this, and I will certainly be taking this up with my
               Labour party colleague Ed Miliband. Labour has got a plan to move
               towards equality for disabled people, as set out in our 14-strand
               ‘roadmap’ to 2025. Employment for disabled adults of working age is an
               extremely important issue, as is eradicating hate crime.

                John Barrett MP,
                disability spokesman for the Liberal Democrats
               While I am confident that the Liberal Democrats have the best range of
               policies for creating a fairer society for all, the most important message
               I would like to spread is that the act of voting itself is the most
               important thing, no matter who you give your vote to. By playing their
               part in electing MPs, people with learning disabilities can then hold these
               politicians, who they helped to elect, to account. The Liberal Democrats
               believe that it is realistic to work towards pushing turnout up to the
               45-50% range for people with a learning disability.

22                                                                    Viewpoint March/April 2010

Assembly politics: the
election in Northern
Ireland and Wales

The Northern Ireland Assembly and the
National Assembly for Wales each have
devolved powers from Westminster to legislate
on a wide range of issues. However, the MPs
elected in these regions will have the same
impact in Westminster as any other.
    “The electorate in Wales will elect 40 MPs in
2010 and Mencap Cymru is determined that our
elected representatives are aware of the
barriers preventing the inclusion of people with
a learning disability,” says Sian Davies, Partners
in Politics manager for Mencap Cymru.
Partners in Politics gives young people with a
learning disability the chance to have their say.
The team has produced a training session for
students focused on the general election, and
will be collaborating with All Wales People First
to arrange a series of hustings to make sure
parliamentary candidates hear the concerns of
their constituents with a learning disability.
    In Northern Ireland, agreements were
recently reached on devolving responsibility for
policing and justice – adding to the wide range
of other devolved areas, such as housing and
employment. However, discussions between the
Conservative and Ulster Unionist parties about
possible joint candidates and fears over the
                                                     Top to bottom: Stormont, home of the Northern Ireland
possible collapse of the Assembly have
                                                     Assembly, the Houses of Parliament in Westminster and
increased interest in the election.                  the Senedd, home of the National Assembly for Wales
    “It seems the general election will be used
to measure changes in support within and
between the different political parties in            Key points
Northern Ireland, rather than to comment on
their success at Westminster,” says Paschal           • An election to choose a new
McKeown, policy and information manager for
Mencap in Northern Ireland. “Against a
                                                        government is happening
backdrop of severe cuts in public spending and          very soon.
the failure of the main political parties to reach
agreement on a raft of policy proposals, it is        • It is important to register to
even more important to ensure that learning
disability services and issues remain a priority
                                                        vote and take part!
for the government in Northern Ireland.”

Viewpoint March/April 2010                                                                          23

Having faith
in inclusion
The Judith Trust is championing inclusion within Judaism and other
religions. Pam Vallance, policy manager for the learning disability
charity, explains the background and goals of the campaign

                                                                     religious life, we hope to
                                                                     promote better inclusion of
                                                                     this group in all aspects of
                                                                     Jewish life.
                                                                         There are some barriers to
                                                                     the success of this campaign,
                                                                     however. Some believe that
                                                                     people with a learning
                                                                     disability cannot participate
                                                                     fully in Jewish spiritual life, as
                                                                     they will not understand the
                                                                     content of sermons or follow
                                                                     the service at the synagogue.
                                                                     Our stance is that anything is
                                                                     possible. People with a learning
                                                                     disability should be given the
                                                                     chance to try and, if a task is
                                                                     too difficult, to think creatively
                                                                     about how to adapt it so the
                                                                     goal can be achieved.
Our inclusion campaign aims       film’. The film follows Lior, a
to encourage Jewish               boy with Down’s syndrome, as       A sense of social belonging
organisations to reconsider       he prepares for his Bar Mitzvah.   There are roughly 5,000 Jewish
how they welcome people with      It provoked audiences to           people with a learning
a learning disability and their   consider how communities           disability in the UK. When we
families and carers.              can support those with a           take into account their families
    The campaign was              learning disability, providing     and carers, we are looking at
launched at the London Jewish     inspiration for making inclusion   15,000 to 20,000 Jewish
Film Festival in November 2009    real and meaningful.               people whose lives are
with the UK film premiere of          By asking rabbis and their     affected by learning disability.
Praying with Lior, which was      congregations to ensure this          In 2007, the Judith Trust
named ‘Best documentary           meaningful inclusion in Jewish     commissioned research into

24                                                                           Viewpoint March/April 2010

  what it means to be Jewish          that people with a physical          Inter-faith inclusion
  to people with a learning           disability can access the            Although the campaign is
  disability and their families.      synagogue, and materials for         centred on Judaism it has been
  The research demonstrated           the congregation could be            informed by people from a wide
  the great importance this           adapted to make them easier          variety of faiths. We are keen to
  group places on their               to read.                             encourage other communities to
  Jewishness: it gives them a              This year the central focus     engage with an inclusion
  sense of strength and social        of the campaign is that we’re        agenda in a manner appropriate
  belonging and forms an              asking synagogues across the         to their congregation.
  important part of their identity.   UK to hold a ‘day of inclusion’          In November 2009, the
  However, a number of those          or an inclusion Shabbat. And         Judith Trust, along with the
  surveyed did not feel able to       there are a number of ways           Board of Deputies of British
  participate in religious or         that people from the learning        Jews, organised an inter-faith
  cultural activities.                disability community can             round table, opening a dialogue
      There were several              get involved:                        between faith leaders on this
  suggestions of ways they could      • become an inclusion               topic. It brought together
  be made to feel more included.         champion within your              leaders from many different
  For example, parents wanted            synagogue – you could             faiths to discuss the importance
  information on best practice           organise an inclusion             of including people with a
  and someone at each                    Shabbat or Kiddush and            learning disability in a holistic
  synagogue to provide support.          invite all congregants with       and meaningful way.
  They also want rabbis to be            disabilities and their families       While the campaign is
  trained on inclusion and               and carers                        London-based currently, we
  pastoral care for parents.          • synagogue members can             hope to roll it out nationally and
      We are trying to achieve           also talk to their rabbi and      encourage other faiths to take
  some of these goals by                 synagogue committee               up the challenge. By successfully
                                         members about their               engaging the Jewish
“Our stance is that                     inclusion policy and ask for      community, we are seeking to
  anything is possible”                  it to be reviewed if necessary    provide a model for wider faith
                                      • share your experiences of         inclusion work.
  engaging leaders of the Jewish         inclusion (good or bad)
  community. We are raising              with us                                Call Pam Vallance on
  funds for a dedicated project       • contact us for additional         020 7266 1073 or go to
  manager for the campaign,              materials to support the
  planning training for rabbis and       campaign (including easy-         To find out more about the film
  practitioners, and producing a         read leaflets)                    Praying with Lior go to
  good practice manual.               • if you are a faith or   
      We hope that rabbis will           community leader and want         What does being Jewish mean
  introduce the inclusion concept        to make inclusion a priority,     to you? is available at
  through their sermons and ask          please join our inclusion
  their congregations for support        campaign steering group.          index/903514267.pdf
  in carrying out practical steps.
  For example, they should make
  sure they are aware of which
                                        Key point
  families belonging to their
  synagogue include someone
                                        • A charity is working with the Jewish
  with a learning disability, and         community to include people with a
  could appoint an ‘inclusion
  champion’. It is very important
                                          learning disability.

  Viewpoint March/April 2010                                                                            25
You can also read