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I am also the sibling of a person with Aspergers who lives very happily and independently thanks to benefits. She lives very happily in a supported living arrangement. I am a parent of a 20 year old young lady with severe learning disability, autism and a mild physical disability.
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Some research into how far research reaches, and how to make it reach further, more quickly - please.ģ) Listen & then check you've 'heard' correctly. Wiithout it he would have be classed as having 'challenging behaviour' so, information for all on what is being expressed by 'challenging behaviour' and why, is/would be transforming and amazing. ) Also, Sensory Perception disorder identification and de-sensitization therapy has made the most humungous difference.
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Also, research into how children can learn how to support and include their learning disabled peers would change the world (they currently don't have permission to even try. Also, research into how teachers and 'mainstream' activity masters can quickly and easily get some empathy and diversity training/learning and how they might be best supported to 'include' successfully (and address their fears). PSG Self-advocates, Learning Disability Studies, University of Manchesterġ) the research that makes a difference to my son is around: what chemical differences he has, and how to (without chemicals) take them into account and discover what can he eat or do to create balance (ie he uses the B vitamins more than many and needs Marmite frequently - he is dairy intolerant and has MASSIVELY less snot, and can think more clearly without it etc etc). There is some research we cannot do but why can't learning disabled people have more say in the control of that research?.and not just in a tokenistic way - real control and input with the necessary independent support to help them to do it? This would cost a lot but if it's uncertain whether more traditional research methods are working doesn't it seem worth trying? Why isn't our expertise by experience valued in the research field and in society as a whole? We think we are helping other learning disabled people too. We enjoy this work and we learn a lot and hope others learn from us. We have some questions and comments to add.Why is so much research done ON learning disabled people and not BY and/or WITH learning disabled people? We are learning disabled researchers and we would like to do more researching if we had the chance. Give up our place at the policy table to organisations directly run and controlled by families and disabled people - or only agree to be involved in 'consultations' where they are inclusive and respect the lived experiences of disabled people and families. Connect people to others in the community. Don't just ignore people who cold-call you because they found your name online somewhere and want to tell you their story. I'm always sceptical of measuring 'impact' - and I think the only way we know if something's worked is if the people involved and people who've found out about it, think it's been helpful to them - we can't ever really prove or measure impact in the broader sense.ģ) Be open.
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1) Research that documents people's struggles to change the system - grassroots social movements, family collectives and self advocacy, but only if it involves bringing people together to share their experiences and learn from each other, and then documents that learning so that others can benefit from it.Ģ) This kind of work has to be designed of and carried out jointly with coalitions of disabled people and families - or led primarily by disabled people and families rather than by researchers.