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LA taking full Care component for over night care
Hi My step son (29) whom lives with us has severe needs including peg feeding , he is receiving over night care 12 nights a year, the LA provide the money for this in his care package and he gives £11 a month towards this, they now propose to take his full care component of pip to pay for this over night care. Is there…
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Spotlight on surviving the summer holidays
Autumn term is nearly here. Summer has gone by so quickly. How has it been for you? My favourite part of Summer is being able to walk my dog when it’s still light in the evening. Hopefully the sunlight will stay for a few more weeks yet. What are your plans for the remaining few days? Maybe it’s last minute school shoe…
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Tac review for son with autism moving to yr5
hi- would appreciate any help on what to do. My son has pda autism which can manifest in stress situations in him disregulating and lashing out. The mainstream school he is in, had a change of leadership in yr 3 , and since then it’s been a struggle as they don’t understand him in the way the previous leadership did. He…
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Proper treatment of a child with CP problem
I am Painda Mand father of a son who is disable. I am deeply concerned for my child how to find a care center, where a CP child may be admitted for the treatment. My son aged 10 years is unable to talk and walk. What you suggests for me, as i am international citizen, abroad. But unfortunately, in our country there are no…
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My Son has cerebral palsy and looking for support groups!
HI all My Son has cerebral palsy he is only 16 months old..however I want to support him as much as possible and would love to get help from others in a similar situation or help other families. Can anyone point me in the right direction, or shall I create my own!! Thanks Dale
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Second pregnancy
Hello. My daughter is six. My husband and I would like to have a second baby. Last time I was 32. I'm now 39 and would be at least 40 by the time the baby arrived. I have spastic diplegia and use a walking frame, though I don't need it indoors. I can walk quite long distances with it, but if I overdo it I get bad cramp. My…
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Understanding and Addressing Behaviours of Concern in CP
Understanding and Addressing Behaviours of Concern This online session will help parents, carers and other adults to make sense of what a child, young person or adult’s behaviours mean and explore ways of reducing behaviours of concern. Focus will be placed on practical assessment and intervention tools that can be used in…
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Spotlight on going back to school
Good afternoon everyone. We are now halfway through the school holidays. The family services team are here to answer any back to school questions. We can offer advice on: Preparing your child. Asking school or college for support. Managing a different routine. Please also use this space to: · Share what works for you. ·…
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Spotlight on adaptive school uniform and clothing
Our parent advisers are available to answer your questions about adaptive clothing. This includes: •Clothing and uniform for children with sensory needs •High street alternatives that can be adapted and save you money •Asking school for reasonable adjustments to your child's uniform Please also use this space to: · Share…
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Reablement Care
This is available for up to 6 weeks after coming out of hospital - but the article says that some types may be "at cost" - but it doesn't say which types ? Is it MEAN TESTED or not ? https://www.nhs.uk/conditions/social-care-and-support-guide/care-after-a-hospital-stay/care-after-illness-or-hospital-discharge-reablement/
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Cerebral Palsy Charity Celebrates 70 Years
BBC Bedford Parents in Bedford are celebrating a charity that has spent decades giving their children with cerebral palsy “amazing opportunities” Sara Family Services Adviser
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Clothing for Children Disability Research
Hi fellow community members! I’m a PHD student researching the lack of choice for children’s clothing for those with disabilities. My little brother had CP and we had a nightmare buying right fitting clothes for him. Hoping to shine a light on the issues our community faces. Would you be so kind as to share your child’s…
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Equipment support disabled parents.
Hello everyone. I am disabled and can't walk. I use an electric wheelchair. I have a 19 month old daughter. I would appreciate it if you could help me find equipment to help me move around with her. Such as a baby pushchair attached to the wheelchair and so on. Thank you in advance.
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Carers assessment - why ?
I have a operation coming on my shoulders - they are both arthritic and need replacing with metal. I don't have a date at the moment, it could be in 12 months time - but it IS happening. I am aware that NHS will not let me go home - until I am ready and should also supply hoists etc. I had a care needs assessment, 12…
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polymicrogyria (PMG)
Hi, we are parents of 2 children, our 4 year old daughter Jessica, & 16 month old Edward who was recently diagnosed with polymicrogyria (PMG). He is currently around a 5 month level developmentally & coming to terms with the diagnosis & uncertainty of his future is proving really difficult ? it will be good to hear from…
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Has anyone adopted a child while claiming disability benefits?
Hi,Me and my partner have been looking into potentially adopting in the future, and I can't see anything in the criteria that bans disabled people or people on benefits, but I wanted to ask and see if anyone has actually had success being approved as an adoptive parent while claiming a disability benefit? I think the main…
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Carers allowance overpayment
I started my job in December and informed universal credit immediately, I did not realize I had to inform DWP aswell. My jobs part time as I care for my elderly Mother so I receive universal credit which my carers allowance was deducted from. I have now been informed that I owe £2030 to DWP as I wasn't entitled to carers…
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8 year old ASD - shared care difficulties
Hello, I was hoping someone in the community may be able to give me some advice or have experienced a similar situation to me. I currently have a shared care arrangement with my ex for our 8 year old son, this was done through courts as i’ve been denied access from when he was small so i’ve battled through courts with his…
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Creative pathways free event for young people and teenagers with cerebral palsy
Hi everyone. Please see this exciting opportunity for young people and teenagers with cerebral palsy. This August 29-30th, Embrace Space: Arts & Wellbeing are inviting teenagers (11-19 years) with cerebral palsy, to an exciting FREE event looking at career pathways within the creative industries, led by professionals with…
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Grandson ripping his clothes
Hi, I'm here because I have a grandson that lives with me. He has extra chromosome a little verbal. He started ripping his clothes. I have trowed away 3 large garbage bags that he ripped. Please help... I don't know what to do.
