Prader Willi Syndrome

Some of you may be aware that the Government, in their spending review and efforts to save money from the benefit system, are planning to withdraw DLA Mobility to all people who live in residential care homes.  The rationale for this is that most residential care homes have their own transport and therefore mobility is not needed by residents in such establishments. 

 

The impact of this will be that people living in New Directions Homes, and those living in other registered residential care homes, will be significantly worse off each month.  The use of mobility allowance by the service users is wide ranging and it was never the intention that the money be used strictly for mobility/transport.  For example many people with PWS (and other learning disabilities) are unable to go out unaccompanied, and this money can be used to assist on one to one outings, use of public transport, holidays, leisure activities and much more.

 

If you feel strongly that this is an unfair way of saving what amounts to be a small amount of money, we suggest that you take action.  This can be by way of a letter to your MP asking that they take the matter to the Minister for urgent review.  

 

If you have internet access, we would also recommend that you visit the MenCap website.  They have set up a forum where you can add your name to the list of people who protest most strongly about this ‘reform’.  Go to the ‘Campaigns’ tab and look for Protect the Mobility Component of DLA.  Once you have filled in the simple form and pressed continue there is then a sample letter to send to the MP’s should you wish to use it.  The link is http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=78&ea.campaign.id=8319&ea.param.extras=source%3ADLA_TakeAction

 

If you feel as strongly as we all do at New Directions about this injustice, please take a few minutes to make your voice heard.  We have already spoken to the PWSA and they will also be campaigning to get this changed.

The PWSA residential and supported living forum met on Monday 15^th November 2010 at the Riverside Centre in Derby. Many of the main providers of residential options to persons with PWS were present. The forum, which included 2 representatives from New Directions, discussed various agenda items including; The Forum for People with PWS; Supported Living and Residential Questionnaires; Dangers from Choking; Residential Fee Reductions and Other Financial Changes; Residential Care/Capacity Conference in the North; International Conference 2013 Program Ideas.

 

The forum split into 4 groups to discuss issues around food items/stolen items that are secreted in the person with PWS bedrooms. The idea was to get an overall view of what is in the best interest of the individual and best practice for providers.

 

Any views or practice parents or other providers may have on paragraph 2, we would be pleased to hear from you.

 

On Sunday 14^th November Neville and Gwen Newham attended Bishops Corner to accept a cheque on behalf of the Prader-Willi Syndrome Association to the value of £5000.

 

The money had been raised by fundraising efforts of the Girls Out Loud Dragon Boat team which did so very well in coming 53^rd out of 54 teams that entered that entered this year’s event.

 

Following the presentation the girls and their supporters enjoyed a celebration drink and a further £146 was raised via horse racing on DVD. This money will go towards the next fundraising initiative that is currently in the planning stages.

 

Thank you to all that participated in the event and raised funds for the association.

The inaugural meeting of Forum Board representing individuals with PWS was held at New Directions offices in Hastings. The board consists of Elizabeth Amey who resides at Bishops Lodge, Josh Courtauld and Gregg Wilcox who both reside at Bishops Croft and Katie Williams from Bristol. The meeting was facilitated by Alison Woodhead from the Prader-Willi Syndrome Association.

 

The board was set up following the “Our Way of Life” conference held in June in Derby. This was to give a voice to individuals with PWS to have a say in aspects of their lives.

 

The next meeting is scheduled for March 2011 again due to be held in Hastings.

 

Below is a photo of the board from left to right Gregg, Katie, Elizabeth and Josh.

The clock struck 6.00am and the front door of Bishops Corner slowly opened with the eary creek the house was deadly silent, not a sole in sight and in walks Franken Alan and the Wicked Witch Donna.  A spell was cast into a Halloween house of horrors…..  Each and everyone of the services users had a spell cast upon them as they all awoke.  The house suddenly began to fill with Witches, Ghosts and Vampires they all tucked into a lovely lunch and even enjoyed a lovely bowl of frog spawn yummm yummm. 

So you just remember if you come to Bishops Corner on Halloween Night you wont get a treat but you sure get a fright.

A big thank you to all the staff that came to work in fancy dress, it really made it a great day.

Senior Support worker, Donna Barfield

 

First we made the decorations in day services, we all decorate the house, we all dress up in home made Halloween costume help by Sanchia.

We all played games of Bingo, we all winner prizes, we all had some party food and it was very nice.

Paula, Bishops Corner

 

On Friday last week we had a party at Bishops Corner lots of staff came in early in the morning to make it a nice surprise.  All week we worked on decorations and started to put them up, this was done by staff on the day then we all had our dinner in the evening and our eat at lunch time the party food was really superb as we all have difficulty maintaining our weights as part of our condition.  We had mini sausage, scotch egg, a salsa dip, fries (crisp style), betroot sandwiches, pickles and mini babybel and olives.  We sat and played Bingo and we all won a prize on different games.  I got a gothic spiked rubber bracelet and rubber choker and we all took part to tell different pieces for a Halloween Story.

Sam, Bishops Corner

 

On the Friday of 29th October I get up to go to school (where I work) and when I went down stair and saw Donna and Alan.  Donna asked me if I would like to go to school or the Halloween party and I said yes I like to go to halloween party and not to school.  I went to have my breakfast and then I help Alan to put thing up for party.  I made two Halloween posters of Jason from Friday 13th and my bloody valentine for the house.  We put it in the windows upstairs and then I put a t-shirt on for the Halloween party.  Then we went in the house to do a game called Halloween Bingo I win a gothic bracelet but I am give it to my step sister for Christmas.  Then the staff ask us to go back in day service, then the staff said that dinner is ready, we have party food and it is very nice.  Thanks Donna and Alan and Sanchia for put the Halloween party together.

Ryan, Bishops Corner

 

                              http://www.justgiving.com/girlsoutloud-pwsa 

 

On Sunday 14th November at Bishops Corner at 4pm the fundraising efforts of the Dragon Boat Team come to a climax with a cheque presentation to Julian Courtauld who is secretary of the Trustee Board of the Prader Willi Syndrome Association. His son Josh is resident at Bishops Croft. To see the amount raised see the above link. There is still a few pledges to arrive.

After the presentation the team and their supporters are going to the Clarence in Silverhill St. Leonards for a celebration “shandy”. The Clarence have hosted fundraising events towards the Dragon Boat funds. There will be 3 horse races on DVD with the idea of raising the 1st coppers of the next fundraising initiative which is in the planning stage. Watch this space…. 

http://www.youtube.com/watch?v=ofgjtGra3I8&hd=1