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Contact a Family e-Newsletter - June 2009

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  • Toni Abram
    Message 1 of 2 , Jun 10, 2009
      > Contact a Family June e-newsletter
      >
      > ++Contents.
      >
      > +01: Contact a Family Directory 2009 - Out now.
      >
      > +02: Attitudes towards disability shocking say UK families with
      > disabled children.
      >
      > +03: Contact a Family premieres new films.
      >
      > +04: New ways to get in touch on MakingContact.org .
      >
      > +05: Job vacancies at Contact a Family.
      >
      > +06: Simpler rules on backdating extra tax credit payments.
      >
      > +07: Increase in Family Fund age limits.
      >
      > +08: Need help to pay for essential items?
      >
      > +09: Parents of disabled children rate delivery of the 'core offer'.
      >
      > +10: Budget boost for disabled children and their families.
      >
      > +11: Disabled children and short breaks interim report published.
      >
      > +12: Clarification on the Health Service's Short Breaks money.
      >
      > +13: New national representative body for special schools.
      >
      > +14: New heath and social care regulator for England.
      >
      > +15: KIDS Direct Short Breaks service.
      >
      > +16: London Zoo's fun day for children with additional needs.
      >
      > +17: Free holidays for children with life limiting illnesses.
      >
      > +18: Parents of disabled children included in plans for new savings
      > scheme.
      >
      > +19: £9 million for Northern Ireland to improve community support for
      > children with complex needs.
      >
      > +20: Online advice about equipment for disabled children.
      >
      > +21: New website for young people with mental health problems.
      >
      > +22: New sign language advice films (England and Wales).
      >
      > +23: New website for Every Child Matters.
      >
      > +24: New guide to help healthcare professionals 'get it right'.
      >
      > +25: Disabled children and young people - have your say.
      >
      > +26: Tell the government what you think of the special educational
      > needs process.
      >
      > +27: Giving children and young people a right to appeal statements of
      > special educational needs.
      >
      > +28: Volunteers needed to help research for genetic counsellors.
      >
      > +29: New podcast on TAR syndrome.
      >
      > +30: New podcast on Sturge-Weber syndrome.
      >
      > +31: New podcast on Bladder Exstrophy.
      >
      > .
      >
      > ++Contact a Family news.
      >
      > +01: CONTACT A FAMILY DIRECTORY 2009 - OUT NOW
      >
      > 'The Contact a Family Directory' is the UK's leading guide to
      > disabilities and health conditions, including rare disorders.
      >
      > If you work with children or adults affected by disability or
      > additional needs, the Contact a Family Directory is a vital resource
      > for you and your colleagues.
      >
      > The Contact a Family Directory is available in paperback for £40, or
      > as an annual subscription to an online version for £17.25. Order the
      > book now, and you can also get the online subscription at a reduced
      > price of only £5, helping you to have all the information at your
      > fingertips and the click of a button.
      >
      > The paperback book also come with a free wallchart (while stocks
      > last) detailing benefits, practical help and support available for
      > families with disabled children.
      >
      > To order the Contact a Family Directory, visit Web:
      > http://www.cafamily.org.uk/shop.html?scat=8 .
      >
      > +02: ATTITUDES TOWARDS DISABILITY SHOCKING SAY UK FAMILIES WITH
      > DISABLED CHILDREN.
      >
      > Families with disabled children in the UK feel stigmatised and shut
      > out from society, according to new research published by Contact a
      > Family.
      >
      > Contact a Family surveyed 615 families with disabled children about
      > their experiences of living in the UK, asking what makes you stronger
      > practically, socially and emotionally.
      >
      > 'What makes my family stronger' found negative attitudes towards
      > disability coupled with a lack of services are the main barriers
      > preventing families with disabled children from leading ordinary
      > lives. While some families show resilience, imagination and great
      > strength attempting to overcome these barriers, there are some who
      > cannot cope any longer and are at breaking point.
      >
      > Key findings of the 'What makes my family stronger' report are:
      >
      > - Almost 70% of families with disabled children said that
      > understanding and acceptance of disability from their community or
      > society is poor or unsatisfactory.
      >
      > - Over 60% of families said they don't feel listened to by
      > professionals.
      >
      > - Vital support services such as short breaks, a key worker and
      > childcare are unavailable to almost half of families.
      >
      > - Over 60% of families said they don't feel valued by society in
      > their role as carers.
      >
      > - Half of families with disabled children said the opportunity to
      > enjoy play and leisure together is poor or unsatisfactory.
      >
      > Srabani Sen, Chief Executive of Contact a Family, said: 'It is
      > shocking that in the UK today, attitudes towards disabled children,
      > from professionals and members of the public are among the barriers
      > preventing families from leading ordinary lives. Families with
      > disabled children have enough challenges to overcome to secure the
      > support they need without also having to cope with prejudice and
      > ignorance.'
      >
      > Contact a Family is calling for:
      >
      > - The government to invest in a UK-wide campaign to raise awareness
      > of the needs of families with disabled children.
      >
      > - Everyone working in a public facing role in the UK to be given
      > disability equality training. And stronger focus on disability
      > awareness in schools.
      >
      > - The much welcomed and significant investment in short breaks
      > services in England must be sustained and included in the next
      > Spending Review.
      >
      > - The government to commit to urgently reviewing carers benefits and
      > set a clear timetable for reform.
      >
      > Contact a Family welcomes the government's recent investment in
      > services for disabled children and their families, but there is still
      > a long way to go before the right support is available to all who need
      > them.
      >
      > Srabani Sen added: 'Families with disabled children want the same
      > things as other families. They want to see their children reach their
      > full potential, they want to be included and accepted by their
      > community and they want to enjoy time together and have fun.
      >
      > 'For this to happen, professionals need to recognise each child's
      > capabilities rather than seeing only disability. They must also
      > recognise the value and expertise of parent carers. And every one of
      > us needs to be more understanding and accepting of disability.'
      >
      > Read the report in full at Web: http://www.cafamily.org.uk/wmmfs.pdf
      >
      > For further information contact: Elaine Bennett, Media Officer, Tel:
      > 020 7608 8741/8744, e-mail: elaine.bennett@... .
      >
      > +03: CONTACT A FAMILY PREMIERES NEW FILMS.
      >
      > Contact a Family is premiering three new short films about families
      > with disabled children.
      >
      > The web videos feature families talking about their experiences of
      > raising a child with a disability and the best sources of support they
      > have found.
      >
      > You can view the films on our YouTube channel at Web:
      > http://www.youtube.com/user/cafamily .
      >
      > +04: NEW WAYS TO GET IN TOUCH ON MAKINGCONTACT.ORG .
      >
      > Contact a Family's flagship social networking site now has message
      > boards to enable families with children with rare conditions across
      > the world to share experiences and support each other.
      >
      > There are over 6,000 parents registered on our on-line service
      > MakingContact.org. Parents can make contact with others whose children
      > have the same condition in order to gain, and give, support through
      > the sharing of experiences and knowledge.
      >
      > For more information visit Web: http://www.makingcontact.org .
      >
      > 05: JOB VACANCIES AT CONTACT A FAMILY.
      >
      > Contact a Family has several job vacancies currently being
      > advertised.
      >
      > Head of Publications and New Media.
      >
      > - 1 year fixed term contract (with possible extension)
      >
      > - 35 hours per week
      >
      > - Salary £37,473 - £40,104 (inclusive of London Weighting), scale
      > points 41 to 44.
      >
      > - Based at City Road, London
      >
      > - Closing date: 5th June 2009, 5pm
      >
      > - Interview date: 11th June 2009
      >
      > Finance Officer
      >
      > - 35 hours a week
      >
      > - Salary £22,627 - £24,501, scale 22-25 on NJC Local Government
      > Scales.
      >
      > - Based at City Road, London
      >
      > - Closing date: 8th June 2009
      >
      > - Interview date: 12th June 2009
      >
      > Database Information Researcher
      >
      > - 1 year fixed term contract
      >
      > - Salary scale 26-28 £22,001 - 26,739 (dependant on experience and
      > location)
      >
      > - 35 hours - office or home based
      >
      > - Closing date: 10th June 2009, 5pm
      >
      > - Interview date: 19th June 2009
      >
      > Family Worker (part-time)
      >
      > - Salary scale point 26-28 £22,001 - £23,473
      >
      > - 17.5 hours per week fixed term contract until December 2011
      >
      > - Based in Cumbria
      >
      > - Closing date: 22nd June 2009
      >
      > - Interview date: 1st July 2009
      >
      > Family Worker (part-time)
      >
      > - Salary scale point 26-28 £22,001 - £23,473
      >
      > - 17.5 hours per week fixed term contract until March 2011
      >
      > - Based in the West Midlands
      >
      > - Closing date: 3rd July 2009
      >
      > - Interview date: 13th July 2009
      >
      > For more information on these jobs visit Web:
      > http://www.cafamily.org.uk/about/jobs.html .
      >
      > .
      >
      > ++News stories.
      >
      > +06: SIMPLER RULES ON BACKDATING EXTRA TAX CREDIT PAYMENTS.
      >
      > If your child is awarded Disability Living Allowance (DLA) or has an
      > existing DLA award increased to the highest rate, this can lead to
      > extra child tax credit payments, known as the disability elements.
      > Following lobbying by Contact a Family and others, the rules on
      > backdating of these payments have been simplified.
      >
      > Prior to April 2009, any parent who wanted to make sure these
      > disability elements were fully backdated had to notify tax credits
      > both when they claimed DLA and when they got a DLA award. Many parents
      > lost out because they were unaware of the need to tell tax credits
      > that a claim was being made. However, since April 2009 the rules have
      > been simplified. Now you only need to notify DLA once - when you get
      > an award. If you are awarded DLA for your child (or have an existing
      > award increased to the high rate for personal care) let tax credits
      > know within three months of the DLA decision. So long as you do this,
      > any extra tax credit payments will be backdated in line with the DLA
      > award.
      >
      > You can access the new rules in full at Web:
      > http://www.opsi.gov.uk/si/si2009/pdf/uksi_20090697_en.pdf
      >
      > If you have any questions about this or any other benefits issues
      > please contact our helpline on Tel: 0808 808 3555.
      >
      > +07: INCREASE IN FAMILY FUND AGE LIMITS.
      >
      > Recent changes in the age limits mean that the Family Fund can now
      > give grants for severely disabled children aged up to 18 in England,
      > Northern Ireland, Scotland and Wales.
      >
      > To qualify, eligible families must have a gross income of no more
      > than £23,000 pa and savings of £18,000 or less (figures current from
      > 2008, reviewed periodically). The fund can help families caring for a
      > disabled child up to the 18th providing the application is received
      > before the young person's 18th birthday.
      >
      > For information Tel: 01904 550037 or visit Web:
      > http://www.familyfund.org.uk/ .
      >
      > +08: NEED HELP TO PAY FOR ESSENTIAL ITEMS?
      >
      > Save the Children, in partnership with UK charity Family Action, is
      > distributing cash crisis grants to around a thousand families who are
      > struggling in the recession.
      >
      > They aim to deliver £150,000 to those families most in need. The
      > money will be given to help people pay for basic essentials. Help is
      > for low income families with children up to 18 years old, including
      > families with disabled children. It is particularly aimed at people
      > living on benefits or who have just lost their jobs.
      >
      > Grants are available in England, Scotland and Wales. Northern Ireland
      > is not covered by the grants because the Executive has made a £150
      > one-off household fuel payment to families.
      >
      > To find out how to apply for a crisis grant please visit Family
      > Action at Web: http://www.family-action.org.uk or download an
      > application form at Web:
      > http://www.family-action.org.uk/uploads/documents/Families%20in%20Crisis%20Application%20Form.pdf
      >
      >
      > +09: PARENTS OF DISABLED CHILDREN RATE DELIVERY OF THE 'CORE OFFER'.
      >
      > The Office of National Statistics has published an overall
      > satisfaction score of parents of disabled children of 59 out of 100
      > for delivery of the government's 'core offer' for disabled children.
      >
      > The 'core offer', introduced through Aiming High for Disabled
      > Children, is the commitment from local authorities and Primary Care
      > Trusts to disabled children and their parents on how they will be
      > informed and involved as their needs are assessed and necessary
      > services are delivered.
      >
      > Aiming High for Disabled Children also introduced a new national
      > indicator - NI54 - on services for disabled children. NI54 assesses
      > parents' general experience of services for disabled children aged 0
      > to 19 and the extent to which services are delivered according to the
      > 'core offer'.
      >
      > To download the DCSF Statistical Release visit Web:
      > http://www.dcsf.gov.uk/rsgateway/DB/STR/d000846/index.shtml
      >
      > +10: BUDGET BOOST FOR DISABLED CHILDREN AND THEIR FAMILIES.
      >
      > Contact a Family welcomes the significant investment announced in the
      > budget to provide additional financial support for disabled children
      > and their families through the Child Trust Fund.
      >
      > The government will pay £100 (£200 for severely disabled children)
      > per year into a disabled child's trust fund. Entitlement to these
      > payments will be linked to receipt of Disability Living Allowance
      > (DLA) and payments will start in April 2010.
      >
      > +11: DISABLED CHILDREN AND SHORT BREAKS INTERIM REPORT PUBLISHED.
      >
      > 'Short breaks tracking - an interim report April 2009' has been
      > published by campaign group Every Disabled Child Matters (EDCM), of
      > which Contact a Family is a founder member.
      >
      > Between 2008-2011, EDCM will be evaluating the impact of the Aiming
      > High for Disabled Children (AHDC) short breaks programme on the lives
      > of disabled children and their families.
      >
      > This three year tracking project will provide evidence to influence
      > delivery of short breaks, push for evaluation of AHDC and call for
      > sustained investment for disabled children's services from the next
      > government spending review.
      >
      > The interim report highlights examples of good practice and
      > identifies areas of concern.
      >
      > Read the report in full at Web:
      > http://www.edcm.org.uk/short_breaks_tracking_interim_april09.pdf .
      >
      > For more information on the EDCM campaign for short breaks visit Web:
      > http://www.edcm.org.uk/shortbreaks .
      >
      > +12: CLARIFICATION ON THE HEALTH SERVICE'S SHORT BREAKS MONEY.
      >
      > The government has written to every Primary Care Trusts (PCTs) in
      > England setting out the funding position and specific actions required
      > from PCTs to improve the lives of disabled children.
      >
      > The Care Quality Commission has also announced it will carry out a
      > special review this year to examine the health and social care for
      > families with disabled children and young people.
      >
      > The government has clarified that 1.23% of the £27,596 million
      > additional resources the Department of Health is making to PCTs from
      > 2008-2011 is for disabled children's services and has set out priority
      > areas that should benefit from this expenditure including short
      > breaks, community equipment, wheelchairs and children's palliative
      > care.
      >
      > Read the full letters at Web:
      > http://www.dh.gov.uk/en/Publicationsandstatistics/Lettersandcirculars/Dearcolleagueletters/DH_097376
      > .
      >
      > +13: NEW NATIONAL REPRESENTATIVE BODY FOR SPECIAL SCHOOLS.
      >
      > The Department for Education and Skills has provided £150,000 in
      > start-up funds to create a national representative body for special
      > schools.
      >
      > The new body is called the 'Federation of Leaders in Special
      > Education' (FLSE). It aims 'to shape and deliver SEN policy to ensure
      > every child's needs are met'. They welcome all those who are involved
      > in the education of children and young people with special educational
      > needs.
      >
      > For more information visit Web: http://www.flse.org.uk/ .
      >
      > +14: NEW HEATH AND SOCIAL CARE REGULATOR FOR ENGLAND.
      >
      > The Healthcare Commission, Commission for Social Care Inspection and
      > the Mental Health Act Commission have merged to become The Care
      > Quality Commission, the new heath and social care regulator for
      > England.
      >
      > Their aim is to look at the joined up picture of health and social
      > care and ensure better care for everyone in hospital, in a care home
      > and at home. They regulate health for children and adults, and adult
      > social care services in England, whether they're provided by the NHS,
      > local authorities, private companies or voluntary organisations. They
      > also protect the rights of people detained under the Mental Health
      > Act.
      >
      > Part of their work is assessing, checking and reviewing health
      > services for children and commissioning a comprehensive child and
      > adolescent mental health service. You can contact them if you need
      > help finding information about your local NHS Trust
      >
      > For more information Tel: 03000 616161.
      >
      > Web: http://www.cqc.org.uk .
      >
      > +15: KIDS DIRECT SHORT BREAKS SERVICE.
      >
      > KIDS, a national charity for disabled children and young people have
      > received funding from the Department for Children Schools and Families
      > (DCSF) to develop a new short breaks service.
      >
      > 'KIDS Direct Short break' will use internet and text messaging
      > technology to link families with disabled children to short break
      > workers in their local area who are trained and managed by KIDS.
      >
      > The service aims to put families in control of their short break so
      > they can manage them to fit around family life, and be personalised to
      > the interests and aspirations of the child or young person (aged up to
      > 25).
      >
      > From April 2009 funding will be available to all local authorities
      > that can demonstrate they are ready to deliver high quality short
      > breaks. The service is currently running in Sutton and Hull, and they
      > are applying to other local authority areas as they develop their
      > short break services.
      >
      > KIDS would like to hear from parents about how the service would
      > support their family and get an idea of the local demand. You can use
      > their online form at Web: http://tinyurl.com/cc73oo to register your
      > interest and they can notify your local authority and provide them
      > with information on Direct Short Breaks and how it could help your
      > family.
      >
      > For more information Tel: 0845 453 1000 or visit Web:
      > http://www.directshortbreaks.org.uk .
      >
      > +16: LONDON ZOO'S FUN DAY FOR CHILDREN WITH ADDITIONAL NEEDS.
      >
      > Children with disabilities and their families are invited to a London
      > Zoo fun day with reduced admission costs on Saturday 13th June.
      >
      > The day is an annual event put on by London Zoo, enabling families
      > with disabled children to enjoy all the zoo has to offer and more at a
      > discount price.
      >
      > Also available on the day will be British Sign Language
      > interpretation for all talks and displays, face painting, live band
      > and a separate entrance and welcome near the main car park.
      >
      > Families with disabled children need to pre-book and prepay before
      > 6th June to get the reduced rates.
      >
      > For more details and a booking form, please contact Steve, Tel: 020
      > 7449 6551 or e-mail: steve.marriott@...
      >
      > +17: FREE HOLIDAYS FOR CHILDREN WITH LIFE LIMITING ILLNESSES.
      >
      > Camp Quality UK is a charity that takes children with a potential
      > life limiting illness (including cancer) on holidays, giving them the
      > chance to be themselves and to have fun.
      >
      > The holiday programme is structured to cater for all abilities and
      > disabilities and there is a medical team on hand. Every holiday is
      > funded entirely by Camp Quality UK and is provided free of charge to
      > each child.
      >
      > For more information visit Web: http://www.campquality.org.uk .
      >
      > +18: PARENTS OF DISABLED CHILDREN INCLUDED IN PLANS FOR NEW SAVINGS
      > SCHEME.
      >
      > The government has included families with disabled children in their
      > plans for a savings scheme called the 'Saving Gateway'.
      >
      > From 2010 the savings scheme will be open to people of working age on
      > low incomes and in receipt of specified benefits, including Carer's
      > Allowance. For every pound saved the government will give a
      > contribution of 50p. Savers will be able to pay up to £25 a month into
      > their account for two years, which means a potential contribution from
      > the government of £300 after the two year period.
      >
      > For more information visit Web:
      > http://www.direct.gov.uk/en/MoneyTaxAndBenefits/ManagingMoney/SavingsAndInvestments/DG_10010450
      > .
      >
      > +19: £9 MILLION FOR NORTHERN IRELAND TO IMPROVE COMMUNITY SUPPORT FOR
      > CHILDREN WITH COMPLEX NEEDS.
      >
      > Children and young people with complex physical healthcare needs in
      > Northern Ireland will be receiving support to live with their family
      > due to a £9 million investment over the next three years. The aim is
      > to provide care packages appropriate to the needs of each child and
      > family, including nursing support, equipment, training and respite
      > care (short breaks).
      >
      > The investment is in addition to a yearly £200,000 for the Children's
      > Hospice for outreach services for those with complex physical
      > healthcare needs.
      >
      > Specific yearly funding of £220,000 was also announced recently to
      > improve hospital services for children with intractable epilepsy.
      >
      > For more information visit the Northern Ireland Executive website at
      > Web:
      > http://www.northernireland.gov.uk/news/news-dhssps/news-dhssps-community-support-for-children020209.htm
      >
      > .
      >
      > ++New resources for families.
      >
      > +20: ONLINE ADVICE ABOUT EQUIPMENT FOR DISABLED CHILDREN.
      >
      > Disability charity, the Disabled Living Foundation has launched an
      > advice and information website on equipment for children and young
      > people with disabilities.
      >
      > The site, Living Made Easy for Children has been created by an
      > occupational therapists and aims to bring together information on
      > every product for children and young people with disabilities into one
      > place.
      >
      > The site includes a star rating system showing whether suppliers have
      > provided prices for the product and whether they have signed up to
      > industry Codes of Conduct. Users can review products themselves,
      > discuss products with other parents or ask for specific advice from
      > occupational therapists.
      >
      > For more information visit Web:
      > http://www.livingmadeeasy.org.uk/children .
      >
      > +21: NEW WEBSITE FOR YOUNG PEOPLE WITH MENTAL HEALTH PROBLEMS.
      >
      > YoungMinds have launched a new website 'My head Hurts', a new website
      > for young people with mental health problems. It provides information
      > to young people diagnosed with anxiety, self harm, conduct disorder,
      > depression, ADHD and eating disorders. The idea for the site came from
      > young people themselves and they have been central in its creation and
      > content.
      >
      > For more information visit Web:
      > http://www.youngminds.org.uk/my-head-hurts .
      >
      > +22: NEW SIGN LANGUAGE ADVICE FILMS (ENGLAND AND WALES).
      >
      > Community Legal Advice (CLA) has created a set of films that give
      > advice in British Sign Language (BSL) to people who have large debts,
      > have been made redundant or are at risk of losing their home. The
      > advice is in BSL, but a voiceover has been added.
      >
      > Titles include: dealing with debt, losing your home, dealing with
      > rent problems - if you rent privately, claiming benefits, problems
      > with schools and care proceedings.
      >
      > Watch these films on YouTube at Web:
      > http://www.youtube.com/user/communitylegaladvice?gl=GB&hl=en-GB .
      >
      > .
      >
      > ++New resources for professionals.
      >
      > +23: NEW WEBSITE FOR EVERY CHILD MATTERS.
      >
      > The Department for Children, Schools and Families has re-developed
      > the Every Child Matters (ECM) website.
      >
      > The new site incorporates three former sites: Every Child Matters,
      > Local Authorities and Sure Start. It is aimed to be a single channel
      > for information aimed at professionals within the children's
      > workforce, including information on Aiming High for Disabled Children,
      > special educational needs and disability.
      >
      > Visit the Every Child Matters website at Web:
      > http://www.dcsf.gov.uk/everychildmatters .
      >
      > +24: NEW GUIDE TO HELP HEALTHCARE PROFESSIONALS 'GET IT RIGHT'.
      >
      > Prominent health organisations, including the Royal College of
      > Nursing and the Royal Society of Medicine, have joined forces with
      > Mencap to produce a best practice guide for health professionals.
      >
      > The health bodies, representing over one million health professionals
      > in the UK, came together in response to the publication of Mencap's
      > 'Death by indifference' report, which exposed the shocking deaths of
      > six people with a learning disability, who died unnecessarily in NHS
      > care. The guide, 'Getting it right', aims to stop discrimination and
      > focuses on improving healthcare for people with a learning disability
      > in the NHS. It is accompanied by an interactive website.
      >
      > Download the report at Web:
      > http://www.mencap.org.uk/displaypagedoc.asp?id=6770 .
      >
      > .
      >
      > ++Consultations and surveys
      >
      > +24: Disabled children and young people - have your say.
      >
      > This summer the Every Disabled Child Matters (EDCM) campaign are
      > working with disabled children and young people to develop a disabled
      > young people's manifesto.
      >
      > The aim is to directly influence party policies in the run up to the
      > general election and ensure that each party manifesto includes
      > commitments for disabled children and their families that have been
      > informed by the views of disabled children and young people
      > themselves.
      >
      > EDCM want to hear from disabled children and young people about what
      > they want to included in the young people's manifesto.
      >
      > For more information or to send in answers, photos or pictures visit
      > Web: http://www.edcm.org.uk/ypmanifesto or e-mail: pamela@...
      >
      > Responses need to be in by Friday 26th June 2009.
      >
      > +26: TELL THE GOVERNMENT WHAT YOU THINK OF THE SPECIAL EDUCATIONAL
      > NEEDS PROCESS.
      >
      > The Lamb Inquiry was set up to advise the Secretary of State on the
      > most effective ways of increasing parents confidence in the special
      > educational needs (SEN) assessment process.
      >
      > At the end of April, Brian Lamb submitted the report, 'Lamb Inquiry
      > Review of SEN and Disability Information' outlining his
      > recommendations and identifying further issues from the evidence so
      > far.
      >
      > Now the Inquiry is very keen to get your views of the SEN system and
      > is inviting everyone - parents, children and staff in schools and
      > children's services - to answer their online questionnaires.
      >
      > The call for evidence closes at 10pm on 30th June 2009.
      >
      > Let the government know about your experiences at Web:
      > http://www.dcsf.gov.uk/lambinquiry/evidence.shtml .
      >
      > To read the Inquiry Review and related documents visit Web:
      > http://www.dcsf.gov.uk/lambinquiry/ .
      >
      > +27: GIVING CHILDREN AND YOUNG PEOPLE A RIGHT TO APPEAL STATEMENTS OF
      > SPECIAL EDUCATIONAL NEEDS.
      >
      > The government are currently running a consultation on giving
      > children and young people a right to appeal decisions on exclusions,
      > SEN statements and assessments, and to make disability discrimination
      > claims in England.
      >
      > They are seeking the views of children and young people, parents,
      > carers, governing bodies, local government, school staff, teaching and
      > support staff unions (including professional bodies), tribunal and
      > independent appeal panel members, associated representative
      > organisations and the voluntary sector.
      >
      > The consultation ends on Tuesday 28th July 2009.
      >
      > Take part in the consultation at Web:
      > http://www.dcsf.gov.uk/consultations/index.cfm?action=consultationDetails&consultationId=1607&external=no&menu=1
      > .
      >
      > +28: VOLUNTEERS NEEDED TO HELP RESEARCH FOR GENETIC COUNSELLORS.
      >
      > The Medical Research Council, in collaboration with The Genetic
      > Interest Group, is carrying out research to develop new ways of
      > measuring how people with genetic diseases or conditions might benefit
      > from seeing a geneticist/genetic counsellor or attending a genetics
      > clinic (a place where people can be tested, diagnosed and counselling
      > can be offered to help cope with the affects of a diagnosis).
      >
      > They are looking for people aged 17 years and older from families
      > affected by genetic conditions to help with this, by completing an
      > early version of their questionnaire. You do not need to have used a
      > clinical genetics service yourself to help with this research. There
      > has been very little research in this area and this is an opportunity
      > for you to help with research that may improve services for affected
      > families.
      >
      > Use PIN number 1144 to access the questionnaire, fill in the consent
      > agreement and then complete the questionnaire. You can withdraw from
      > it at any point.
      >
      > To complete the questionnaire online go to Web:
      > http://www.geneticsforpatients.org.uk/ .
      >
      > For a paper copy of the questionnaire please contact: Marion
      > McAllister PhD, MRC Research Fellow, Tel: 0161 276 8979, e-mail:
      > marion.mcallister@..., Web:
      > http://www.nowgen.org.uk/stories/232-dr_marion_mcallister .
      >
      > .
      >
      > ++ New podcasts.
      >
      > +29: NEW PODCAST ON TAR SYNDROME.
      >
      > Contact a Family has produced a new podcast on TAR syndrome
      > (Thrombocytopenia and Absent Radius).
      >
      > In Thrombocytopenia and Absent Radius there are low platelets and
      > absence of the radius on both sides (bilaterally). The radius and the
      > ulna are the two bones in the forearm. The radius is the bone that is
      > on the side of the forearm where the thumb is. There may be other
      > bones involved as well but the unique feature of Thrombocytopenia and
      > Absent Radius is that although the radius is absent, the thumb is
      > present.
      >
      > This podcast is a father's experience of having a child with TAR
      > syndrome.
      >
      > Listen to the podcast at Web:
      > http://www.cafamily.org.uk/audio/TAR_syndrome_parent_interview.mp3 .
      >
      > +30: NEW PODCAST ON STURGE-WEBER SYNDROME.
      >
      > Contact a Family has produced a new podcast on Sturge-Weber syndrome.
      >
      >
      > Sturge-Weber syndrome (SWS) is a congenital disorder involving the
      > brain, skin and eyes.
      >
      > There is a facial birth mark (port wine stain), a layer of blood
      > vessels over the covering of the brain (venous angioma of the
      > leptomeninges) and there may be an angioma (collections of abnormal
      > blood vessels) involving the inner lining of the eye (choroidal
      > angioma). The angioma usually involves one side of the brain and
      > varies in extent. More rarely it may involve both sides of the brain.
      >
      > This podcast is a mother's experience of having a child with
      > Sturge-Weber syndrome.
      >
      > Listen to the podcast at Web:
      > http://www.cafamily.org.uk/audio/sturge-weber_parent_interview.mp3 .
      >
      > +31: NEW PODCAST ON BLADDER EXSTROPHY.
      >
      > Contact a Family has produced a new podcast on Bladder Exstrophy.
      >
      > The exstrophy epispadias complex is a spectrum of disorders ranging
      > in severity from epispadias through bladder exstrophy to cloacal
      > exstrophy. All three and their variants are rare congenital
      > abnormalities, which affects boys more frequently than girls.
      >
      > This podcast is a mother's experience of having a child with Bladder
      > Exstrophy and Epispadias.
      >
      > Listen to the podcast at Web:
      > http://www.cafamily.org.uk/audio/bladder_exstrophy_parent_interview.mp3
      > .
      >
      > .
      >
      > .
      >
      >
      >
      > ++ Subscription details.
      >
      > To unsubscribe from this e-Newsletter goto
      >
      > ?uid=c5c5cb85426277cb7bd61d483e967aeb .
      >
      > To change your preferences go to
      >
      > http://lists.cafamily.org.uk/lists/?p=preferences&uid=c5c5cb85426277cb7bd61d483e967aeb
      > .
      >
      > NOTE: those links may have wrapped in your e-mail client, make sure you
      > enter the entire URL when browsing
      > to the relevant page.
      > .
      >
      > ++ Contact details.
      >
      > This E-newsletter conforms to the accessible Text Email Newsletter (TEN)
      > Standards. For details see Web:
      > http://www.headstar.com/ten .
      >
      > For details of this newsletter please go to Web:
      > http://lists.cafamily.org.uk .
      >
      > Questions about the newsletter should be sent to e-mail:
      > mailto:info@... .
      >
      > Contact a Family is a UK based, registered charity for families with
      > disabled children. We offer a helpline (free in the UK) for families,
      > Tel: 0808 808 3555. Text: 0808 808 3556. Tel: 020 7608 8700 Admin.
      > Websites:
      > http://www.cafamily.org.uk .
      > http://www.makingcontact.org
      > e-mail:
      > mailto:info@... .
      >
      > .
      >
      >
      >
      > Contact a Family use PHPlist,
      > http://www.phplist.com .
      >
      > [End of e-Newsletter]
      >
      >
      > --
      > Contact a Family use PHPlist, www.phplist.com --
      >
      >
    • Connie Guinn
      VERY interesting, Toni. Thanks for posting this! xo Connie Connie Guinn, Director MTM-CNM Conference Planning Team www.mtm-cnm.com281-997-3581 Good Search:
      Message 2 of 2 , Jun 10, 2009
        VERY interesting, Toni. Thanks for posting this! 

        xo Connie
         

        Connie Guinn, Director

        MTM-CNM Conference Planning Team

        www.mtm-cnm.com

        281-997-3581

        Good Search: http://www.goodsearch.com/?charityid=894813
        Good Shop: http://www.goodshop.com/?charityid=894813

        GoodSearch: You Search...We Give!








        From: Toni Abram <toni.abram1@...>
        To: Myotubular_Myopathy@yahoogroups.com
        Cc: Toni Abram <toni.abram1@...>
        Sent: Wednesday, June 10, 2009 4:32:12 AM
        Subject: [Myotubular_Myopathy] Contact a Family e-Newsletter - June 2009



        > Contact a Family June e-newsletter
        >
        > ++Contents.
        >
        > +01: Contact a Family Directory 2009 - Out now.
        >
        > +02: Attitudes towards disability shocking say UK families with
        > disabled children.
        >
        > +03: Contact a Family premieres new films.
        >
        > +04: New ways to get in touch on MakingContact. org .
        >
        > +05: Job vacancies at Contact a Family.
        >
        > +06: Simpler rules on backdating extra tax credit payments.
        >
        > +07: Increase in Family Fund age limits.
        >
        > +08: Need help to pay for essential items?
        >
        > +09: Parents of disabled children rate delivery of the 'core offer'.
        >
        > +10: Budget boost for disabled children and their families.
        >
        > +11: Disabled children and short breaks interim report published.
        >
        > +12: Clarification on the Health Service's Short Breaks money.
        >
        > +13: New national representative body for special schools.
        >
        > +14: New heath and social care regulator for England.
        >
        > +15: KIDS Direct Short Breaks service.
        >
        > +16: London Zoo's fun day for children with additional needs.
        >
        > +17: Free holidays for children with life limiting illnesses.
        >
        > +18: Parents of disabled children included in plans for new savings
        > scheme.
        >
        > +19: £9 million for Northern Ireland to improve community support for
        > children with complex needs.
        >
        > +20: Online advice about equipment for disabled children.
        >
        > +21: New website for young people with mental health problems.
        >
        > +22: New sign language advice films (England and Wales).
        >
        > +23: New website for Every Child Matters.
        >
        > +24: New guide to help healthcare professionals 'get it right'.
        >
        > +25: Disabled children and young people - have your say.
        >
        > +26: Tell the government what you think of the special educational
        > needs process.
        >
        > +27: Giving children and young people a right to appeal statements of
        > special educational needs.
        >
        > +28: Volunteers needed to help research for genetic counsellors.
        >
        > +29: New podcast on TAR syndrome.
        >
        > +30: New podcast on Sturge-Weber syndrome.
        >
        > +31: New podcast on Bladder Exstrophy.
        >
        > .
        >
        > ++Contact a Family news.
        >
        > +01: CONTACT A FAMILY DIRECTORY 2009 - OUT NOW
        >
        > 'The Contact a Family Directory' is the UK's leading guide to
        > disabilities and health conditions, including rare disorders.
        >
        > If you work with children or adults affected by disability or
        > additional needs, the Contact a Family Directory is a vital resource
        > for you and your colleagues.
        >
        > The Contact a Family Directory is available in paperback for £40, or
        > as an annual subscription to an online version for £17.25. Order the
        > book now, and you can also get the online subscription at a reduced
        > price of only £5, helping you to have all the information at your
        > fingertips and the click of a button.
        >
        > The paperback book also come with a free wallchart (while stocks
        > last) detailing benefits, practical help and support available for
        > families with disabled children.
        >
        > To order the Contact a Family Directory, visit Web:
        > http://www.cafamily .org.uk/shop. html?scat= 8 .
        >
        > +02: ATTITUDES TOWARDS DISABILITY SHOCKING SAY UK FAMILIES WITH
        > DISABLED CHILDREN.
        >
        > Families with disabled children in the UK feel stigmatised and shut
        > out from society, according to new research published by Contact a
        > Family.
        >
        > Contact a Family surveyed 615 families with disabled children about
        > their experiences of living in the UK, asking what makes you stronger
        > practically, socially and emotionally.
        >
        > 'What makes my family stronger' found negative attitudes towards
        > disability coupled with a lack of services are the main barriers
        > preventing families with disabled children from leading ordinary
        > lives. While some families show resilience, imagination and great
        > strength attempting to overcome these barriers, there are some who
        > cannot cope any longer and are at breaking point.
        >
        > Key findings of the 'What makes my family stronger' report are:
        >
        > - Almost 70% of families with disabled children said that
        > understanding and acceptance of disability from their community or
        > society is poor or unsatisfactory.
        >
        > - Over 60% of families said they don't feel listened to by
        > professionals.
        >
        > - Vital support services such as short breaks, a key worker and
        > childcare are unavailable to almost half of families.
        >
        > - Over 60% of families said they don't feel valued by society in
        > their role as carers.
        >
        > - Half of families with disabled children said the opportunity to
        > enjoy play and leisure together is poor or unsatisfactory.
        >
        > Srabani Sen, Chief Executive of Contact a Family, said: 'It is
        > shocking that in the UK today, attitudes towards disabled children,
        > from professionals and members of the public are among the barriers
        > preventing families from leading ordinary lives. Families with
        > disabled children have enough challenges to overcome to secure the
        > support they need without also having to cope with prejudice and
        > ignorance.'
        >
        > Contact a Family is calling for:
        >
        > - The government to invest in a UK-wide campaign to raise awareness
        > of the needs of families with disabled children.
        >
        > - Everyone working in a public facing role in the UK to be given
        > disability equality training. And stronger focus on disability
        > awareness in schools.
        >
        > - The much welcomed and significant investment in short breaks
        > services in England must be sustained and included in the next
        > Spending Review.
        >
        > - The government to commit to urgently reviewing carers benefits and
        > set a clear timetable for reform.
        >
        > Contact a Family welcomes the government's recent investment in
        > services for disabled children and their families, but there is still
        > a long way to go before the right support is available to all who need
        > them.
        >
        > Srabani Sen added: 'Families with disabled children want the same
        > things as other families. They want to see their children reach their
        > full potential, they want to be included and accepted by their
        > community and they want to enjoy time together and have fun.
        >
        > 'For this to happen, professionals need to recognise each child's
        > capabilities rather than seeing only disability. They must also
        > recognise the value and expertise of parent carers. And every one of
        > us needs to be more understanding and accepting of disability.'
        >
        > Read the report in full at Web: http://www.cafamily .org.uk/wmmfs. pdf
        >
        > For further information contact: Elaine Bennett, Media Officer, Tel:
        > 020 7608 8741/8744, e-mail: elaine.bennett@ cafamily. org.uk .
        >
        > +03: CONTACT A FAMILY PREMIERES NEW FILMS.
        >
        > Contact a Family is premiering three new short films about families
        > with disabled children.
        >
        > The web videos feature families talking about their experiences of
        > raising a child with a disability and the best sources of support they
        > have found.
        >
        > You can view the films on our YouTube channel at Web:
        > http://www.youtube. com/user/ cafamily .
        >
        > +04: NEW WAYS TO GET IN TOUCH ON MAKINGCONTACT. ORG .
        >
        > Contact a Family's flagship social networking site now has message
        > boards to enable families with children with rare conditions across
        > the world to share experiences and support each other.
        >
        > There are over 6,000 parents registered on our on-line service
        > MakingContact. org. Parents can make contact with others whose children
        > have the same condition in order to gain, and give, support through
        > the sharing of experiences and knowledge.
        >
        > For more information visit Web: http://www.makingco ntact.org .
        >
        > 05: JOB VACANCIES AT CONTACT A FAMILY.
        >
        > Contact a Family has several job vacancies currently being
        > advertised.
        >
        > Head of Publications and New Media.
        >
        > - 1 year fixed term contract (with possible extension)
        >
        > - 35 hours per week
        >
        > - Salary £37,473 - £40,104 (inclusive of London Weighting), scale
        > points 41 to 44.
        >
        > - Based at City Road, London
        >
        > - Closing date: 5th June 2009, 5pm
        >
        > - Interview date: 11th June 2009
        >
        > Finance Officer
        >
        > - 35 hours a week
        >
        > - Salary £22,627 - £24,501, scale 22-25 on NJC Local Government
        > Scales.
        >
        > - Based at City Road, London
        >
        > - Closing date: 8th June 2009
        >
        > - Interview date: 12th June 2009
        >
        > Database Information Researcher
        >
        > - 1 year fixed term contract
        >
        > - Salary scale 26-28 £22,001 - 26,739 (dependant on experience and
        > location)
        >
        > - 35 hours - office or home based
        >
        > - Closing date: 10th June 2009, 5pm
        >
        > - Interview date: 19th June 2009
        >
        > Family Worker (part-time)
        >
        > - Salary scale point 26-28 £22,001 - £23,473
        >
        > - 17.5 hours per week fixed term contract until December 2011
        >
        > - Based in Cumbria
        >
        > - Closing date: 22nd June 2009
        >
        > - Interview date: 1st July 2009
        >
        > Family Worker (part-time)
        >
        > - Salary scale point 26-28 £22,001 - £23,473
        >
        > - 17.5 hours per week fixed term contract until March 2011
        >
        > - Based in the West Midlands
        >
        > - Closing date: 3rd July 2009
        >
        > - Interview date: 13th July 2009
        >
        > For more information on these jobs visit Web:
        > http://www.cafamily .org.uk/about/ jobs.html .
        >
        > .
        >
        > ++News stories.
        >
        > +06: SIMPLER RULES ON BACKDATING EXTRA TAX CREDIT PAYMENTS.
        >
        > If your child is awarded Disability Living Allowance (DLA) or has an
        > existing DLA award increased to the highest rate, this can lead to
        > extra child tax credit payments, known as the disability elements.
        > Following lobbying by Contact a Family and others, the rules on
        > backdating of these payments have been simplified.
        >
        > Prior to April 2009, any parent who wanted to make sure these
        > disability elements were fully backdated had to notify tax credits
        > both when they claimed DLA and when they got a DLA award. Many parents
        > lost out because they were unaware of the need to tell tax credits
        > that a claim was being made. However, since April 2009 the rules have
        > been simplified. Now you only need to notify DLA once - when you get
        > an award. If you are awarded DLA for your child (or have an existing
        > award increased to the high rate for personal care) let tax credits
        > know within three months of the DLA decision. So long as you do this,
        > any extra tax credit payments will be backdated in line with the DLA
        > award.
        >
        > You can access the new rules in full at Web:
        > http://www.opsi. gov.uk/si/ si2009/pdf/ uksi_20090697_ en.pdf
        >
        > If you have any questions about this or any other benefits issues
        > please contact our helpline on Tel: 0808 808 3555.
        >
        > +07: INCREASE IN FAMILY FUND AGE LIMITS.
        >
        > Recent changes in the age limits mean that the Family Fund can now
        > give grants for severely disabled children aged up to 18 in England,
        > Northern Ireland, Scotland and Wales.
        >
        > To qualify, eligible families must have a gross income of no more
        > than £23,000 pa and savings of £18,000 or less (figures current from
        > 2008, reviewed periodically) . The fund can help families caring for a
        > disabled child up to the 18th providing the application is received
        > before the young person's 18th birthday.
        >
        > For information Tel: 01904 550037 or visit Web:
        > http://www.familyfu nd.org.uk/ .
        >
        > +08: NEED HELP TO PAY FOR ESSENTIAL ITEMS?
        >
        > Save the Children, in partnership with UK charity Family Action, is
        > distributing cash crisis grants to around a thousand families who are
        > struggling in the recession.
        >
        > They aim to deliver £150,000 to those families most in need. The
        > money will be given to help people pay for basic essentials. Help is
        > for low income families with children up to 18 years old, including
        > families with disabled children. It is particularly aimed at people
        > living on benefits or who have just lost their jobs.
        >
        > Grants are available in England, Scotland and Wales. Northern Ireland
        > is not covered by the grants because the Executive has made a £150
        > one-off household fuel payment to families.
        >
        > To find out how to apply for a crisis grant please visit Family
        > Action at Web: http://www.family- action.org. uk or download an
        > application form at Web:
        > http://www.family- action.org. uk/uploads/ documents/ Families% 20in%20Crisis% 20Application% 20Form.pdf
        >
        >
        > +09: PARENTS OF DISABLED CHILDREN RATE DELIVERY OF THE 'CORE OFFER'.
        >
        > The Office of National Statistics has published an overall
        > satisfaction score of parents of disabled children of 59 out of 100
        > for delivery of the government's 'core offer' for disabled children.
        >
        > The 'core offer', introduced through Aiming High for Disabled
        > Children, is the commitment from local authorities and Primary Care
        > Trusts to disabled children and their parents on how they will be
        > informed and involved as their needs are assessed and necessary
        > services are delivered.
        >
        > Aiming High for Disabled Children also introduced a new national
        > indicator - NI54 - on services for disabled children. NI54 assesses
        > parents' general experience of services for disabled children aged 0
        > to 19 and the extent to which services are delivered according to the
        > 'core offer'.
        >
        > To download the DCSF Statistical Release visit Web:
        > http://www.dcsf. gov.uk/rsgateway /DB/STR/d000846/ index.shtml
        >
        > +10: BUDGET BOOST FOR DISABLED CHILDREN AND THEIR FAMILIES.
        >
        > Contact a Family welcomes the significant investment announced in the
        > budget to provide additional financial support for disabled children
        > and their families through the Child Trust Fund.
        >
        > The government will pay £100 (£200 for severely disabled children)
        > per year into a disabled child's trust fund. Entitlement to these
        > payments will be linked to receipt of Disability Living Allowance
        > (DLA) and payments will start in April 2010.
        >
        > +11: DISABLED CHILDREN AND SHORT BREAKS INTERIM REPORT PUBLISHED.
        >
        > 'Short breaks tracking - an interim report April 2009' has been
        > published by campaign group Every Disabled Child Matters (EDCM), of
        > which Contact a Family is a founder member.
        >
        > Between 2008-2011, EDCM will be evaluating the impact of the Aiming
        > High for Disabled Children (AHDC) short breaks programme on the lives
        > of disabled children and their families.
        >
        > This three year tracking project will provide evidence to influence
        > delivery of short breaks, push for evaluation of AHDC and call for
        > sustained investment for disabled children's services from the next
        > government spending review.
        >
        > The interim report highlights examples of good practice and
        > identifies areas of concern.
        >
        > Read the report in full at Web:
        > http://www.edcm. org.uk/short_ breaks_tracking_ interim_april09. pdf .
        >
        > For more information on the EDCM campaign for short breaks visit Web:
        > http://www.edcm. org.uk/shortbrea ks .
        >
        > +12: CLARIFICATION ON THE HEALTH SERVICE'S SHORT BREAKS MONEY.
        >
        > The government has written to every Primary Care Trusts (PCTs) in
        > England setting out the funding position and specific actions required
        > from PCTs to improve the lives of disabled children.
        >
        > The Care Quality Commission has also announced it will carry out a
        > special review this year to examine the health and social care for
        > families with disabled children and young people.
        >
        > The government has clarified that 1.23% of the £27,596 million
        > additional resources the Department of Health is making to PCTs from
        > 2008-2011 is for disabled children's services and has set out priority
        > areas that should benefit from this expenditure including short
        > breaks, community equipment, wheelchairs and children's palliative
        > care.
        >
        > Read the full letters at Web:
        > http://www.dh. gov.uk/en/ Publicationsands tatistics/ Lettersandcircul ars/Dearcolleagu eletters/ DH_097376
        > .
        >
        > +13: NEW NATIONAL REPRESENTATIVE BODY FOR SPECIAL SCHOOLS.
        >
        > The Department for Education and Skills has provided £150,000 in
        > start-up funds to create a national representative body for special
        > schools.
        >
        > The new body is called the 'Federation of Leaders in Special
        > Education' (FLSE). It aims 'to shape and deliver SEN policy to ensure
        > every child's needs are met'. They welcome all those who are involved
        > in the education of children and young people with special educational
        > needs.
        >
        > For more information visit Web: http://www.flse. org.uk/ .
        >
        > +14: NEW HEATH AND SOCIAL CARE REGULATOR FOR ENGLAND.
        >
        > The Healthcare Commission, Commission for Social Care Inspection and
        > the Mental Health Act Commission have merged to become The Care
        > Quality Commission, the new heath and social care regulator for
        > England.
        >
        > Their aim is to look at the joined up picture of health and social
        > care and ensure better care for everyone in hospital, in a care home
        > and at home. They regulate health for children and adults, and adult
        > social care services in England, whether they're provided by the NHS,
        > local authorities, private companies or voluntary organisations. They
        > also protect the rights of people detained under the Mental Health
        > Act.
        >
        > Part of their work is assessing, checking and reviewing health
        > services for children and commissioning a comprehensive child and
        > adolescent mental health service. You can contact them if you need
        > help finding information about your local NHS Trust
        >
        > For more information Tel: 03000 616161.
        >
        > Web: http://www.cqc. org.uk .
        >
        > +15: KIDS DIRECT SHORT BREAKS SERVICE.
        >
        > KIDS, a national charity for disabled children and young people have
        > received funding from the Department for Children Schools and Families
        > (DCSF) to develop a new short breaks service.
        >
        > 'KIDS Direct Short break' will use internet and text messaging
        > technology to link families with disabled children to short break
        > workers in their local area who are trained and managed by KIDS.
        >
        > The service aims to put families in control of their short break so
        > they can manage them to fit around family life, and be personalised to
        > the interests and aspirations of the child or young person (aged up to
        > 25).
        >
        > From April 2009 funding will be available to all local authorities
        > that can demonstrate they are ready to deliver high quality short
        > breaks. The service is currently running in Sutton and Hull, and they
        > are applying to other local authority areas as they develop their
        > short break services.
        >
        > KIDS would like to hear from parents about how the service would
        > support their family and get an idea of the local demand. You can use
        > their online form at Web: http://tinyurl. com/cc73oo to register your
        > interest and they can notify your local authority and provide them
        > with information on Direct Short Breaks and how it could help your
        > family.
        >
        > For more information Tel: 0845 453 1000 or visit Web:
        > http://www.directsh ortbreaks. org.uk .
        >
        > +16: LONDON ZOO'S FUN DAY FOR CHILDREN WITH ADDITIONAL NEEDS.
        >
        > Children with disabilities and their families are invited to a London
        > Zoo fun day with reduced admission costs on Saturday 13th June.
        >
        > The day is an annual event put on by London Zoo, enabling families
        > with disabled children to enjoy all the zoo has to offer and more at a
        > discount price.
        >
        > Also available on the day will be British Sign Language
        > interpretation for all talks and displays, face painting, live band
        > and a separate entrance and welcome near the main car park.
        >
        > Families with disabled children need to pre-book and prepay before
        > 6th June to get the reduced rates.
        >
        > For more details and a booking form, please contact Steve, Tel: 020
        > 7449 6551 or e-mail: steve.marriott@ zsl.org
        >
        > +17: FREE HOLIDAYS FOR CHILDREN WITH LIFE LIMITING ILLNESSES.
        >
        > Camp Quality UK is a charity that takes children with a potential
        > life limiting illness (including cancer) on holidays, giving them the
        > chance to be themselves and to have fun.
        >
        > The holiday programme is structured to cater for all abilities and
        > disabilities and there is a medical team on hand. Every holiday is
        > funded entirely by Camp Quality UK and is provided free of charge to
        > each child.
        >
        > For more information visit Web: http://www.campqual ity.org.uk .
        >
        > +18: PARENTS OF DISABLED CHILDREN INCLUDED IN PLANS FOR NEW SAVINGS
        > SCHEME.
        >
        > The government has included families with disabled children in their
        > plans for a savings scheme called the 'Saving Gateway'.
        >
        > From 2010 the savings scheme will be open to people of working age on
        > low incomes and in receipt of specified benefits, including Carer's
        > Allowance. For every pound saved the government will give a
        > contribution of 50p. Savers will be able to pay up to £25 a month into
        > their account for two years, which means a potential contribution from
        > the government of £300 after the two year period.
        >
        > For more information visit Web:
        > http://www.direct. gov.uk/en/ MoneyTaxAndBenef its/ManagingMone y/SavingsAndInve stments/DG_ 10010450
        > .
        >
        > +19: £9 MILLION FOR NORTHERN IRELAND TO IMPROVE COMMUNITY SUPPORT FOR
        > CHILDREN WITH COMPLEX NEEDS.
        >
        > Children and young people with complex physical healthcare needs in
        > Northern Ireland will be receiving support to live with their family
        > due to a £9 million investment over the next three years. The aim is
        > to provide care packages appropriate to the needs of each child and
        > family, including nursing support, equipment, training and respite
        > care (short breaks).
        >
        > The investment is in addition to a yearly £200,000 for the Children's
        > Hospice for outreach services for those with complex physical
        > healthcare needs.
        >
        > Specific yearly funding of £220,000 was also announced recently to
        > improve hospital services for children with intractable epilepsy.
        >
        > For more information visit the Northern Ireland Executive website at
        > Web:
        > http://www.northern ireland.gov. uk/news/news- dhssps/news- dhssps-community -support- for-children0202 09.htm
        >
        > .
        >
        > ++New resources for families.
        >
        > +20: ONLINE ADVICE ABOUT EQUIPMENT FOR DISABLED CHILDREN.
        >
        > Disability charity, the Disabled Living Foundation has launched an
        > advice and information website on equipment for children and young
        > people with disabilities.
        >
        > The site, Living Made Easy for Children has been created by an
        > occupational therapists and aims to bring together information on
        > every product for children and young people with disabilities into one
        > place.
        >
        > The site includes a star rating system showing whether suppliers have
        > provided prices for the product and whether they have signed up to
        > industry Codes of Conduct. Users can review products themselves,
        > discuss products with other parents or ask for specific advice from
        > occupational therapists.
        >
        > For more information visit Web:
        > http://www.livingma deeasy.org. uk/children .
        >
        > +21: NEW WEBSITE FOR YOUNG PEOPLE WITH MENTAL HEALTH PROBLEMS.
        >
        > YoungMinds have launched a new website 'My head Hurts', a new website
        > for young people with mental health problems. It provides information
        > to young people diagnosed with anxiety, self harm, conduct disorder,
        > depression, ADHD and eating disorders. The idea for the site came from
        > young people themselves and they have been central in its creation and
        > content.
        >
        > For more information visit Web:
        > http://www.youngmin ds.org.uk/ my-head-hurts .
        >
        > +22: NEW SIGN LANGUAGE ADVICE FILMS (ENGLAND AND WALES).
        >
        > Community Legal Advice (CLA) has created a set of films that give
        > advice in British Sign Language (BSL) to people who have large debts,
        > have been made redundant or are at risk of losing their home. The
        > advice is in BSL, but a voiceover has been added.
        >
        > Titles include: dealing with debt, losing your home, dealing with
        > rent problems - if you rent privately, claiming benefits, problems
        > with schools and care proceedings.
        >
        > Watch these films on YouTube at Web:
        > http://www.youtube. com/user/ communitylegalad vice?gl=GB& hl=en-GB .
        >
        > .
        >
        > ++New resources for professionals.
        >
        > +23: NEW WEBSITE FOR EVERY CHILD MATTERS.
        >
        > The Department for Children, Schools and Families has re-developed
        > the Every Child Matters (ECM) website.
        >
        > The new site incorporates three former sites: Every Child Matters,
        > Local Authorities and Sure Start. It is aimed to be a single channel
        > for information aimed at professionals within the children's
        > workforce, including information on Aiming High for Disabled Children,
        > special educational needs and disability.
        >
        > Visit the Every Child Matters website at Web:
        > http://www.dcsf. gov.uk/everychil dmatters .
        >
        > +24: NEW GUIDE TO HELP HEALTHCARE PROFESSIONALS 'GET IT RIGHT'.
        >
        > Prominent health organisations, including the Royal College of
        > Nursing and the Royal Society of Medicine, have joined forces with
        > Mencap to produce a best practice guide for health professionals.
        >
        > The health bodies, representing over one million health professionals
        > in the UK, came together in response to the publication of Mencap's
        > 'Death by indifference' report, which exposed the shocking deaths of
        > six people with a learning disability, who died unnecessarily in NHS
        > care. The guide, 'Getting it right', aims to stop discrimination and
        > focuses on improving healthcare for people with a learning disability
        > in the NHS. It is accompanied by an interactive website.
        >
        > Download the report at Web:
        > http://www.mencap. org.uk/displaypa gedoc.asp? id=6770 .
        >
        > .
        >
        > ++Consultations and surveys
        >
        > +24: Disabled children and young people - have your say.
        >
        > This summer the Every Disabled Child Matters (EDCM) campaign are
        > working with disabled children and young people to develop a disabled
        > young people's manifesto.
        >
        > The aim is to directly influence party policies in the run up to the
        > general election and ensure that each party manifesto includes
        > commitments for disabled children and their families that have been
        > informed by the views of disabled children and young people
        > themselves.
        >
        > EDCM want to hear from disabled children and young people about what
        > they want to included in the young people's manifesto.
        >
        > For more information or to send in answers, photos or pictures visit
        > Web: http://www.edcm. org.uk/ypmanifes to or e-mail: pamela@edcm. org.uk
        >
        > Responses need to be in by Friday 26th June 2009.
        >
        > +26: TELL THE GOVERNMENT WHAT YOU THINK OF THE SPECIAL EDUCATIONAL
        > NEEDS PROCESS.
        >
        > The Lamb Inquiry was set up to advise the Secretary of State on the
        > most effective ways of increasing parents confidence in the special
        > educational needs (SEN) assessment process.
        >
        > At the end of April, Brian Lamb submitted the report, 'Lamb Inquiry
        > Review of SEN and Disability Information' outlining his
        > recommendations and identifying further issues from the evidence so
        > far.
        >
        > Now the Inquiry is very keen to get your views of the SEN system and
        > is inviting everyone - parents, children and staff in schools and
        > children's services - to answer their online questionnaires.
        >
        > The call for evidence closes at 10pm on 30th June 2009.
        >
        > Let the government know about your experiences at Web:
        > http://www.dcsf. gov.uk/lambinqui ry/evidence. shtml .
        >
        > To read the Inquiry Review and related documents visit Web:
        > http://www.dcsf. gov.uk/lambinqui ry/ .
        >
        > +27: GIVING CHILDREN AND YOUNG PEOPLE A RIGHT TO APPEAL STATEMENTS OF
        > SPECIAL EDUCATIONAL NEEDS.
        >
        > The government are currently running a consultation on giving
        > children and young people a right to appeal decisions on exclusions,
        > SEN statements and assessments, and to make disability discrimination
        > claims in England.
        >
        > They are seeking the views of children and young people, parents,
        > carers, governing bodies, local government, school staff, teaching and
        > support staff unions (including professional bodies), tribunal and
        > independent appeal panel members, associated representative
        > organisations and the voluntary sector.
        >
        > The consultation ends on Tuesday 28th July 2009.
        >
        > Take part in the consultation at Web:
        > http://www.dcsf. gov.uk/consultat ions/index. cfm?action= consultationDeta ils&consultation Id=1607&external =no&menu= 1
        > .
        >
        > +28: VOLUNTEERS NEEDED TO HELP RESEARCH FOR GENETIC COUNSELLORS.
        >
        > The Medical Research Council, in collaboration with The Genetic
        > Interest Group, is carrying out research to develop new ways of
        > measuring how people with genetic diseases or conditions might benefit
        > from seeing a geneticist/genetic counsellor or attending a genetics
        > clinic (a place where people can be tested, diagnosed and counselling
        > can be offered to help cope with the affects of a diagnosis).
        >
        > They are looking for people aged 17 years and older from families
        > affected by genetic conditions to help with this, by completing an
        > early version of their questionnaire. You do not need to have used a
        > clinical genetics service yourself to help with this research. There
        > has been very little research in this area and this is an opportunity
        > for you to help with research that may improve services for affected
        > families.
        >
        > Use PIN number 1144 to access the questionnaire, fill in the consent
        > agreement and then complete the questionnaire. You can withdraw from
        > it at any point.
        >
        > To complete the questionnaire online go to Web:
        > http://www.genetics forpatients. org.uk/ .
        >
        > For a paper copy of the questionnaire please contact: Marion
        > McAllister PhD, MRC Research Fellow, Tel: 0161 276 8979, e-mail:
        > marion.mcallister@ manchester. ac.uk, Web:
        > http://www.nowgen. org.uk/stories/ 232-dr_marion_ mcallister .
        >
        > .
        >
        > ++ New podcasts.
        >
        > +29: NEW PODCAST ON TAR SYNDROME.
        >
        > Contact a Family has produced a new podcast on TAR syndrome
        > (Thrombocytopenia and Absent Radius).
        >
        > In Thrombocytopenia and Absent Radius there are low platelets and
        > absence of the radius on both sides (bilaterally) . The radius and the
        > ulna are the two bones in the forearm. The radius is the bone that is
        > on the side of the forearm where the thumb is. There may be other
        > bones involved as well but the unique feature of Thrombocytopenia and
        > Absent Radius is that although the radius is absent, the thumb is
        > present.
        >
        > This podcast is a father's experience of having a child with TAR
        > syndrome.
        >
        > Listen to the podcast at Web:
        > http://www.cafamily .org.uk/audio/ TAR_syndrome_ parent_interview .mp3 .
        >
        > +30: NEW PODCAST ON STURGE-WEBER SYNDROME.
        >
        > Contact a Family has produced a new podcast on Sturge-Weber syndrome.
        >
        >
        > Sturge-Weber syndrome (SWS) is a congenital disorder involving the
        > brain, skin and eyes.
        >
        > There is a facial birth mark (port wine stain), a layer of blood
        > vessels over the covering of the brain (venous angioma of the
        > leptomeninges) and there may be an angioma (collections of abnormal
        > blood vessels) involving the inner lining of the eye (choroidal
        > angioma). The angioma usually involves one side of the brain and
        > varies in extent. More rarely it may involve both sides of the brain.
        >
        > This podcast is a mother's experience of having a child with
        > Sturge-Weber syndrome.
        >
        > Listen to the podcast at Web:
        > http://www.cafamily .org.uk/audio/ sturge-weber_ parent_interview .mp3 .
        >
        > +31: NEW PODCAST ON BLADDER EXSTROPHY.
        >
        > Contact a Family has produced a new podcast on Bladder Exstrophy.
        >
        > The exstrophy epispadias complex is a spectrum of disorders ranging
        > in severity from epispadias through bladder exstrophy to cloacal
        > exstrophy. All three and their variants are rare congenital
        > abnormalities, which affects boys more frequently than girls.
        >
        > This podcast is a mother's experience of having a child with Bladder
        > Exstrophy and Epispadias.
        >
        > Listen to the podcast at Web:
        > http://www.cafamily .org.uk/audio/ bladder_exstroph y_parent_ interview. mp3
        > .
        >
        > .
        >
        > .
        >
        >
        >
        > ++ Subscription details.
        >
        > To unsubscribe from this e-Newsletter goto
        >
        > ?uid=c5c5cb85426277 cb7bd61d483e967a eb .
        >
        > To change your preferences go to
        >
        > http://lists. cafamily. org.uk/lists/ ?p=preferences& uid=c5c5cb854262 77cb7bd61d483e96 7aeb
        > .
        >
        > NOTE: those links may have wrapped in your e-mail client, make sure you
        > enter the entire URL when browsing
        > to the relevant page.
        > .
        >
        > ++ Contact details.
        >
        > This E-newsletter conforms to the accessible Text Email Newsletter (TEN)
        > Standards. For details see Web:
        > http://www.headstar .com/ten .
        >
        > For details of this newsletter please go to Web:
        > http://lists. cafamily. org.uk .
        >
        > Questions about the newsletter should be sent to e-mail:
        > mailto:info@cafamily. org.uk .
        >
        > Contact a Family is a UK based, registered charity for families with
        > disabled children. We offer a helpline (free in the UK) for families,
        > Tel: 0808 808 3555. Text: 0808 808 3556. Tel: 020 7608 8700 Admin.
        > Websites:
        > http://www.cafamily .org.uk .
        > http://www.makingco ntact.org
        > e-mail:
        > mailto:info@cafamily. org.uk .
        >
        > .
        >
        >
        >
        > Contact a Family use PHPlist,
        > http://www.phplist. com .
        >
        > [End of e-Newsletter]
        >
        >
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