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What are parents telling us? Here are a few comments selected from the PAT survey results so far.
94.4% of responses come from parents
83.3% feel that PAT represents parents
94.4% have attended PAT groups
38.9% have done so for 1 - 2 years
16.7% joined within last 12 months
33.3% are new PAT members
83.3% have accessed the PAT website
38.9% have more than one disabled child
33.3% have more than one child with SEN
33.3% have a child with complex needs
22.2% have a child with more than one disability
"Most of the time I feel desperate, exhausted, lonely and frustrated. Everything I try to make things better is so difficult." Sun, 11/18/07 3:52 PM
"Why didn't anyone tell me about PAT before? The biggest problem we have had is that there is no one-stop-shop for information and there is no 'joined-up' service commissioning. We just have to keep going round the same loops making the same mistakes over and over again. We have met some absolutley awful people in charge of services and we have had to deal with some criminally incompetent people too!" Wed, 11/14/07
"We've just been so desperate. PAT has really helped. At last there's some hope." Tue, 11/13/07 9:51 PM
"It has become necessary to fight for everything. I have two children with complex needs. They are falling further and further behind. Nobody listens. The schools seem to be powerless to help. Even with their goodwill it has been almost impossible to get effective help. The LEA are not straight, no honest and not helpful. It has been impossible to get a social care assessment. An assessment was refused and we weren't even told about this." Tue, 11/13/07 6:42 PM
"It's horrible having a child that's not 'perfect'. They just don't fit in, and as a consequence, neither do you." Tue, 11/13/07 10:30 AM
"Amateur self-help is a good start. Mutual self-help is an improvement. PAT needs to go mainstream and develop services, funding and paid workers if it will ever make a real difference. There is nothing else out there." Sun, 11/18/07 3:52 PM
"PAT should stop colluding with Sefton managers. PAT should challenge wrong decisons. PAT probably needs to employ trained advocates and people who know the law and know how to use it." Tue, 11/13/07 6:42 PM
"Having fun - organised trips where we can take our kids and they would be welcome." Tue, 11/13/07 9:15 AM
Hi! Iâm a producer/director with a small, award-winning production company called Walker George Films. We make high quality observational documentaries and have recently been asked by Channel 4 to research a documentary about young people with Downs Syndrome and marriage.
Does anyone on the forum know of a young couple with Downs Syndrome who are getting married later this year? We have met a couple with Downs Syndrome who are already married who we hope to feature in the documentary, but would like to contrast their experience with that of a couple who are planning their wedding. It might be that both partners have Downs Syndrome, or one has Downs Syndrome and the other a different learning difficulty â but the key factor is that they will be getting married later this year. Our intention is to make a moving, life-affirming and inspirational film showing what these couples can teach us about love and marriage.
To let you know a little more about the documentaries we make - our more recent film for Channel 4, âA Boy Called Alex,â told the story of a teenage boy with cystic fibrosis who wanted to conduct Bach's Magnificat. It was received with great acclaim. The Times described it as an "Astounding, life-affirming film... the one essential programme of the week...overwhelming", while the Daily Mail called it "gripping, inspiring, uplifting and humbling". I know the Cystic Fibrosis Trust are extremely pleased with the film and it is currently shortlisted for several awards. Other films we have made include âYoung@Heartâ about a pensioners chorus who sing rock ânâ roll and âGeorge Mellyâs Last Standâ â a film following the jazz legendâs last months.
If anyone can think of a couple that they know of who are thinking of getting married and where one, or both, partners have Downs Syndrome, I would be really grateful if you could get in touch. Any conversations at this stage would, of course, be in the strictest confidence. My telephone number is 0208 743 7733 and my email is Katie.buchanan@walkergeorgefilms.co.uk.
Many thanks,
Katie Buchanan