Edna at the Palace! - Unique - The Rare Chromosome Disorder ...

More documents

Recommendations

Info

money matters continued cases workless families, to be offered free childcare so that they reassess their skills. The programme, to be delivered through the Learning and Skills Council, will start in 67 local authority areas with the highest number of eligible families in January 2009, and will then be rolled out to all local authorities the following September. www.dcsf.gov.uk/pns/ DisplayPN.cgi?pn_id=2008_0189 Register for new service from Family Fund The Family Fund is launching ‘Family Fund Extra’ during October and is calling on families with disabled children to register their interest. Family Fund Extra is a separate scheme from their grant making programme and aims to help families make their money go further. It will offer a variety of discounted goods and services like electrical products and holidays. It will also allow supporters of Family Fund to make a difference to disabled children through donations and ‘donate as you shop’ opportunities. If you care for a child or young person up to the age of 25 years old and would like to benefit from the discounts and services Family Fund Extra will offer, register now at www.familyfundextra.co.uk. The Family Fund Comet gift card is a first step towards the fully-fledged Family Fund Extra and is already up and running. tinyurl.com/667tbv Cash pledged for children with support needs in Scotland The Scottish government has pledged more than £100,000 to help parents of children with additional support needs. Children’s minister Adam Ingram said the money would be used to pay for advocacy services for parents. Funding will be given to voluntary organisations’ ‘Independent Special Education Advice Scotland’ and ‘Govan Law Centre’ to fund advocacy support and representation for parents at tribunals. tinyurl.com/5thm7h special needs A new website dedicated to patient rights in the EU The Centre for Biomedical Ethics and Law of the Catholic University of Leuven in Belgium, in collaboration with the European Commission and EuroGentest, has launched a new website devoted to delineating patient rights in the EU. Seeking to encourage transparency and facilitate the exchange of information between researchers both within Europe and further afield, the website offers an outline of the legislative frameworks and key patient rights in each of 25 EU countries. Beside setting out the provisions of the Convention on Human Rights and Biomedicine, the website offers information on a variety of issues for each country, including personal data protection, discrimination, complaints and compensation, and informed consent – matters all relevant to rare disease patients, their families and caregivers. The preparation of the website was undertaken in the framework of the EuroGentest project. Visit the Patient Rights in the EU website. Adults with learning disabilities to be given extra support by dietitians A new national set of good practice guidelines has been developed by dietitians for health professionals to prevent nutritional problems as well as optimise the health and wellbeing of adults with learning disabilities. This is a much needed and long awaited authoritative document for health professionals, bringing together guidance about the nutritional care of adults with learning disabilities receiving tube feeding in one place. It includes comments from carers interspersed throughout the document that provides a poignant insight into their lives and the value of the Person Centred approach. The executive summary is now available to download from the The British Dietetic Association website www.bda.uk.com. The full document is available to BDA members and RCN members; others may request a copy by contacting the BDA. Advocacy Advocacy Partners McMillan House 54 Cheam Common Road Worcester Park, Surrey KT4 8RH Tel: 020 8330 6644 Fax: 020 8330 6622 Email: info@advocacypartners.org Advocacy Partners is leading the development and delivery of independent advocacy services in London and the South East. We enable people with learning disabilities, older people and people with mental health needs or physical impairments to have rights that are respected, voices that are heard and real control over life decisions. We support people to be treated fairly and to participate fully in community life. Advocacy Partners currently provides the IMCA service in; Camden, Croydon, Islington, Merton, Sussex, Sutton, Tower Hamlets and Wandsworth. Action for Advocacy PO Box 31856, Lorrimore Square London SE17 3XR Tel: 020 7820 7868 Email: info@actionforadvocacy.org.uk www.rarechromo.org Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice. Together National Office 12 Old Street, London EC1V 9BE Tel: 020 7780 7300 Fax: 020 7780 7301 Email: contactus@together-uk.org Together Northern Office Unit 22, Unity Business Centre 26 Roundhay Road, Leeds LS7 1AB Tel: 0113 244 6992 Email: northernoffice@together-uk.org www.together-uk.org/index.asp?id=19 Together supports around 3,500 people through 100 different mental health services across the country. We provide our mental health services by working in partnership with many other organisations, including housing associations, health trusts, local authorities, criminal-justice agencies, private and other voluntary-sector bodies. Our most important partners are the people who use our services. We believe in working with people rather than doing things for or to them. Inspired and informed by our unique values, we run a full range of different types of mental health service, including: ■ advocacy services – supporting people with mental health problems to make their views heard ■ assertive-outreach services – reaching out to those who find it hard to use traditional mental health services Page 24
special needs continued ■ community-support services – supporting people with mental health problems in their own homes ■ residential services – including care-homes giving 24-hour support, high-support residential services, and independent flats with visiting support ■ day-support services – offering a non-threatening environment where people with mental health problems can make new friends and learn new skills ■ employment and work-training schemes – getting people back to work through skillstraining or personal-development services ■ forensic services – for people with mental health problems who have been in contact with the criminal-justice system ■ services for carers – supporting those who care for people with mental health problems ■ Service-user Involvement Directorate – giving people with experience of using mental health services a say. National Youth Advocacy Service Charity Number 1012485 Elena Fowler Tel: 0151 649 8700 99–105 Fax: 0151 649 8701 www.nyas.net NYAS is a UK charity providing socio-legal services. It offers information, advice, advocacy and legal representation to children and young people up to the age of 25 through a network of over 150 advocates. NYAS is also a Community Legal Service. Eye care for people with learning disabilities Look Up is an information service focusing on eye care and vision for people with learning disabilities. It is a collaboration between SeeAbility and RNIB and it operates across the UK to: ■ Raise awareness of the prevalence of sight problems and the high level of under detection of these problems amongst people who have learning disabilities ■ Improve and increase access to regular, accessible and effective eye care for adults with learning disabilities ■ Enhance the quality of life for people with learning disabilities when a sight problem has been identified ■ Help social care and health professionals to develop better services for people with learning disabilities For example: did you know that it is possible to test people’s eyesight using pictures instead of letters? The optometrist does not always need a response from the person in order to find out more about their vision. Look Up, SeeAbility House, Hook Road, Epsom, Surrey, KT19 8SQ Tel: 0800 121 8900 The telephone line is available Monday to Friday 10:00am–4:00pm. Email: info@lookupinfo.org www.lookupinfo.org Kidz Exhibitions Disabled Living organises the largest UK exhibitions totally dedicated to disabled children, their families and the health and social care professionals who work with them. Information on mobility, seating, beds, communication access, education, toys, transport, style, sensory, leisure and more… A programme of FREE seminars and discussions for both parents and professionals will take place alongside the exhibition. These cover a wide range of issues of interest to families with disabled children and the health and social care professionals who work with them. Entry is on a first come, first serve basis. For healthcare professionals, certificates of attendance will be available to collect on the day to boost your CPD portfolio. New by popular demand Kidz in the Middle Thursday 12th March 2009 At the prestigious Ricoh Arena, 71 Phoenix Way, Coventry CV6 6GE Kidz South Thursday 18th June 2009 Rivermead Leisure Complex, Richfield Avenue, Reading Kidz Up North Thursday 20th November 2008 Premier Suite, Middlebrook Exhibition Centre, Reebok Stadium, Bolton Just off junction 6 on the M61 Free entry, easy access, free parking For visitors FREE entry tickets or more information on any of their Kidz events please contact the organisers: Disabled Living Redbank House, 4 St Chad’s Street, Cheetham, Manchester M8 8QA Tel: 0161 214 5962/5959 Fax: 0161 835 3591 www.kidzupnorth.co.uk/ New Tube Maps New tube maps to make life easier for thousands of Londoners, designs show toilet facilities and give new information on step-free use. Knowing where you can get on a tube train without having to negotiate stairs or which stations have a toilet, can be vital for thousands of Londoners and visitors. To make life easier for pregnant, elderly, or disabled passengers the Mayor and London Underground are launching two new tube maps – a tube toilet map, and a new Step-free Tube Guide. The tube toilet map shows which stations have male, female and accessible toilets www.rarechromo.org for wheelchair users, whether they are inside or outside the ticket gates, and whether they have baby changing facilities. The Step-free Tube Guide gives information about the step and gap between the train and platform at step-free stations and gives information about the stations where you can change between lines without encountering steps or escalators. This guide will also help passengers with heavy luggage or those with children’s buggies. Whereas under the old system there were just wheelchair symbols denoting step-free access stations, the new guide has a number of features to help passengers including: ■ Green, amber or red symbols on step free access stations showing the height of the step between the platform and the train, coupled with a coloured ruler on the side of the map so that people can visualise how high the step is ■ Information about the width of the gap between platform and train and there are also different symbols to show stations which are step-free when changing between lines, but where it is not possible to get in or out of the station without using stairs or an escalator ■ Currently London Underground has 54 step-free stations and 25 per cent of stations will be step-free by 2010. Other accessibility information products that TfL produces includes a Guide to Accessibility for all London’s public transport, tube, buses, Docklands light railway, London overground,trams, London river boats, Dial-a-ride, taxis and private hire; large print and audio tube maps – these can be ordered by calling 020 7222 1234, or using the new online ordering form at tfl.gov.uk/accessguides. Overhaul of the Blue Badge scheme An overhaul of the Blue Badge scheme has been announced by the Department for Transport. The Blue Badge scheme provides a range of parking concessions for people with severe mobility problems who have difficulty using public transport. The scheme operates throughout the UK. New proposals announced include extending Blue Badge entitlement to: ■ children under the age of three with specific medical conditions ■ people with the most severe mental impairments/extremely disruptive behavioural problems ■ specific individuals with temporary mobility problems lasting a minimum of one year A new system of assessing eligibility for the Blue Badge is also being developed with the aim to standardise assessments throughout the country. There are also new proposals concerning Page 25
Page 1 and 2: RARE CHROMOSOME DISORDER SUPPORT GR
Page 3 and 4: Deletion (1)(p36.3) with Duplicatio
Page 5 and 6: second terrible “mouth to mouth
Page 7 and 8: Duplication (4)(q31.3qter) René Ro
Page 9 and 10: Eventually in October 2008 a whole
Page 11 and 12: aising awareness and donating monie
Page 13 and 14: 22q13 Deletion UK Family Day Saturd
Page 15 and 16: nd DONATIONS GAPS Panto You may rem
Page 17 and 18: again after a month of no food; it
Page 19 and 20: Collecting my MBE Edna Knight, Foun
Page 21 and 22: ehaviour Anxiety and Stress Coping
Page 23: carers Caring with Confidence Carin
Page 27 and 28: special needs continued Valuing peo

Edna at the Palace! - Unique - The Rare Chromosome Disorder ...

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?