Dear List Member This email is a summary of active conversations happening at the PMLD Network Scotland Online Forum. Janet Cobb has kindly agreed to forward the summary to your list. The PMLD (Profound and multiple learning disability) Network Scotland, administered by PAMIS, a voluntary organisation working with PMLD people and their family carers, is designed to bring people with an interest in profound and multiple disabilities together to exchange information and to work together to bring about change. Members of the Network include people with profound disabilities, parents, carers and professionals from throughout Scotland and elsewhere. The PMLD Network Scotland provides an Online Forum at http://www.dundee.ac.uk/pamis/forum/ where you can raise issues and concerns and hopefully get some answers. Queries may be related to your particular discipline, your daughter's or son's condition, or about a common issue that affects everyone concerned with PMLD. General issues that are pertinent to people concerned with PMLD are also welcome at the Forum. We are contacting this list to invite its members to read and sign up to the Online Forum, which welcomes anybody with something to contribute, even if they are not in Scotland. Unlike an email list-style forum, the PMLD Network Scotland Online Forum is located on a website where any person with an Internet connection can read the information there. It also has a facility for professionals and family carers to log in and post anonymously. This allows for self-directed interaction between Forum members and has resulted in very productive and creative discussions. This summary is designed as an introduction to the Online Forum and can help you find the conversations in which you have an interest. You can click the included link to be taken directly to that conversation on the Online Forum website at http://www.dundee.ac.uk/pamis/forum/ where you can add your own response. You can also start a new conversation by posting it in the appropriate topic area on the Online Forum website. In order to contribute to a conversation or start a new conversation, please post on the Forum website itself, instead of replying through this email address. If you know anybody who could benefit from the PMLD Network Scotland and the Online Forum, please pass this summary on to them. Or you can send me their contact details and we will send theman introductory email. Remember that you can access technical help on using the Forum at http://www.dundee.ac.uk/pamis/pmldintro.htm or you can simply call or send me an email. Best regards Esther Sassaman PMLD Network Scotland Online Forum Administrator e.sassaman@dundee.ac.uk www.dundee.ac.uk/pamis www.dundee.ac.uk/pamis/forum/ 01382 384757 ----- The PMLD Network Scotland Online Forum has several new topic areas in which you contribute: Healthy Lifestyles This topic area is for discussion of anything related to physical fitness, nutrition, sports, leisure and emotional well-being for people with profound and multiple learning disabilities and for their carers. http://www.dundee.ac.uk/pamis/forum/viewforum.php?f=17 Holidays This topic area is for discussion of accessible holiday experiences, travel problems, holiday recommendations, hire of equipment. etc. http://www.dundee.ac.uk/pamis/forum/viewforum.php?f=18 Open Forum This is a place for thoughts that don't fit in other categories, as well as for your creative work. Rants and raves, poems, stories and pictures are all welcome. http://www.dundee.ac.uk/pamis/forum/viewforum.php?f=19 --- Changing Places Campaign The Changing Places Consortium, a group of voluntary organisations and government agencies across the UK, is campaigning for fully accessible toilets with changing benches and room for carers in public places. The Consortium launched its website, http://www.changing-places.org, at a great event at the Tate Modern gallery. On the website you can learn about the details of fully accessible Changing Places toilets, read the stories of people who need them, discover their locations in the UK, and most importantly, download and order free campaigning materials to help get a Changing Places toilet at a public place near you. We encourage everybody to get involved with this campaign. More information and a discussion of the campaign is at http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=15 Ironically, a PAMIS parent returning from the Campaign launch with her PMLD son had to change him on the floor of a standard disabled loo at Heathrow Airport! --- Consultations and reports The Scottish Executive sought consultation on its report, "An action framework for children and young people's health in Scotland." Links to the report, the full response from PAMIS, and a summary of PAMIS' response are available on the Online Forum at http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=211 A review of Independent Living Funds is planned. Part of the consultation process is to gather opinions and experiences of ILF users. The consultants have organised five major consultation meetings to be held over the summer, there is one such consultation in Scotland, to be held on - Monday 4th Sept. More information is available at http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=226. PAMIS has reserved spaces available for this date. A new publication is available on the positive contribution people with profound and multiple learning disabilities can make to society, illustrating the lives of three people with PMLD. The publication includes a DVD with additional content. More information is available at http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=227 --- Continence Pads A forum poster was able to increase the allocation of continence pads for her son using the Online Forum. Read more at http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=2 --- Promoting Body Shape A posture specialist offers very detailed resources for families and personal assistance who care for people with movement difficulties during the day and during sleep periods: http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=218 --- Holidays Julie Taylor from PAMIS offers information on a proven accessible holiday cottage in Speyside: http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=217 News and Information I've posted two relevant notices - one on the Equality 2025 initiative towards the Government meeting its committment to improving the life chances of disabled people, http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=225 and one on a 28 September conference on sports, exercise and intellectual disability: http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=224 Both are re-posted from the Profound and Multiple Learning Disability Network from the Foundation for People with Learning Disabilities at www.learningdisabilities.org.uk --- News and Information The PAMIS newsletter, published August 2006, is available at http://www.dundee.ac.uk/pamis/publications/aug2006news.pdf and has lots of useful information on PAMIS activities. Learn about the Changing Places Campaign, student placements with families to learn about life caring for people with PMLD, PAMIS Healthy Lifestyle Project and fun days, how to get an Epilepsy Night Alarm, and much more. http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=231 --- Portable Folding Bed for PMLD Child? A parent is looking for a folding portable bed for a 10 year old child with PMLD. The child does not move around whilst sleeping so cushions are sufficient rather than sides to stop the child falling out of the bed. The parent would like the bed to be as high as possible. Most portable beds on the market are low. If possible they would like a bed with adjustable height controls. http://www.dundee.ac.uk/pamis/forum/viewtopic.php?t=219 --- Esther Sassaman Secretary, PAMIS e.sassaman@dundee.ac.uk 01382 384757 Join the PMLD Scotland Network and share your questions, experience and expertise with carers and experts across Scotland: http://www.dundee.ac.uk/pamis/PMLD_Net%20Form.doc The PMLD Scotland Network Web Forum: http://www.dundee.ac.uk/pamis/forum/index.php