As you may have seen in the news, the UK government are making unfair changes to the benefits system. They want to change who can get PIP by raising the amount of points people need to get in their assessment for the daily living part of PIP. It is important to know that changes to benefits are not happening straight away, and will only start in 2026.
Mencap are looking to share stories of how this will impact people worried that they may lose their PIP. This will help us show Government what these changes will do. If you are interested to share your story please fill out the form here:
Hi Maurice,Firstly, I would really like to say how much i appreciate being able to be a part of this forum.
It terrifies me that my 26 year old daughter will lose her PIP/benefits as a result of the forthcoming changes; moreover when I am no longer here to fight or advocate on her behalf as I am all she has to do so.
She is Autistic, non-speaking, has OCD and suffers chronic pain from a myriad of physical problems affecting her mobility and general health and quality of life but she does not have a Learning Disability so I cannot "share my story" with Mencap.
I have always felt in a kind of no-man's land about this and have greatly appreciated the kind acceptance from other members here on the forum. If I were able to have my say in sharing my story with Mencap I would say that it is something that I worry about every single day and it makes me feel hopeless and often suicidal as I fear so much for my daughter's future, most especially if PIP/benefits are taken from her. She too is able to understand the reality of this and I know it also worries her tremendously; as if her life was not difficult enough every single day.
I too am Autistic, late-diagnosed, previously diagnosed Mixed Personality Disorder and life has been/is very difficult to navigate but I can mask and speak and engage most of the time and I can leave the house and do things like opening the front door to the delivery man, unlike my daughter.
If possible I would like our "story" here added on somewhere to Mencap's response to the government's very cruel changes.
Hi I really feel for you as I am more or less in a similar situation with my daughter. What are they supposed to do when we are no longer there? Has someone some advice to give us ? Thank you.
Hi Barbado , if you're talking about securing your daughter's financial future, Mencap has a wills and trusts service that can help with planning for the future. Find out more at mencap.org.uk/advice-and-su...
Hello Rhama1975 , thanks for taking the time to reply.
I'm sorry to hear about your situation, unfortunately we're hearing similar from many people across the country who are worried about the government's plans. I can say that my colleagues in Mencap's campaigns and parliamentary teams are raising all the concerns we're hearing with the relevant groups and individuals to help ensure the people continue to receive the benefits they are entitled to.
Any changes are a year away - this gives Mencap (as well as many other disability charities and organisations) to campaign hard against anything that will have a negative affect on people who simply don't deserve to have the additional stress these plans have put upon them.
I'll ask a colleague in the campaigns team to take a look at your post though and, if you're happy to do so even anonymously, add it to the comments that have been shared with us. Please let me know if you'd rather that didn't happen.
Glad you're feeling positive about being a member of the community here - I think sometimes just knowing you're not alone in facing things like this can be a real source of comfort. But please make sure you reach out if you're feeling overwhelmed at all. We have a list of places to turn to in a crisis on our website at mencap.org.uk/crisis
Hi Rhama1975. I feel the same as you do about my son , he lives with me and is 41 yrs old .. Every day is a worry andthe added stress of not knowing whats going to happen to him when I am no longer here can be very overwhelming. He has global development delay non verbal , challenging behaviour and OCD and is as vunerable as a very young child. He needs 24,/ 7 care... He has no understanding of money or safety , he is able bodied . I am praying that things will work out with theses government plans but the not knowing is terrible as if we havnt got enough worry about .. I recieve the state pension so im not entitled to cares allowance , just a small amount of pension credit as its my only income , I have cared for him all of his life so no private pension . I feel that the powers that be have no understanding of what we do and are causing so much stress .. , I hope things work out for your daughter and you can get some peace of mind for your future . Take care
Hi Tracidu,Thank you so much for your message, I really appreciate that. As you no doubt agree, it feels such a desolate and lonely place most of the time and when people who I know obviously understand what it's like to live this way take the time to acknowledge that it really means a lot.
Forgive me please, but can I be so bold as to ask you if you ever considered seeking supported living or anything like that for your son? I feel under so much pressure to push my daughter out to live independently (theoretically so that she can "cope better" when I am gone) but I am also so aware that in doing that she will still suffer and we will both miss out on whatever time I am still here. It feels like the cruellest kind of Russiam Roulette we play out every single day. Sorry, please don't feel obliged to answer that and I do hope I haven't offended you by asking, that was furthest from my intentions truly.
I wish you strength each day and good health to you and your dear son.
Hi Rhama 1975 , you havnt offended me at all . I know exactly what your saying . I have looked at some supported living and residential places and have been very disappointed in what is available so far . Its on my mind every day . Thankyou for your reply and its good to find some empathy. I try not to bother my small group of family and friends with my worries and try to keep thier spirits up but its a lonely place and big decision on my own are overwhelming at times . I will carry on looking to try to find the best place for my son . Thanks again and best wishes to you and your daughter.
Like others we are fearful of the future for our son, who is in his 40's in supported living. He receives support from the Adult Services LD team, but does not have a learning disability as such. He has a mix of other conditions, ASD, Pervasive Developmental Delay, and Psychiatric disorders. He has been able to build a reasonable life for himself with the support and benefits he receives, but without these would be in a desperate situation. As things stand he can have at least some of the experiences that he might have been able to have if not disabled by his conditions, but PIP is also a passport to other opportunities. Our son is able to access football tickets under the disabled fan arrangements which allow him to take a carer, and he can access a reduced cost gym membership. There are many other examples of this, such as theatre/cinema and railcards.
None of this has been a lifestyle choice either for ourselves or our son. We have done our best in difficult circumstances and have already had a lifetime of worry. Those in our situation are very aware that there will come a time when we will not be here as a fallback but thought nevertheless that we had done as much as possible to plan ahead for their future. We had already been consumed with extra worry since the welfare changes were first raised, first by the previous government and now taken even further by the current one. The changes to PIP eligibility which have been proposed seem to target those with some kind of intellectual disability as the ability to prepare a meal from fresh ingredients and being able to wash yourself are going to be removed. This can only be described as mean spirited and unjustifiable. We are just in despair as to what the future might hold.
I don’t have a link as such, it was referred to in news reports when the announcements were first made a few weeks ago. The questions were not being removed, but changed so that fewer people would be eligible. It sounds as though you will only get points for help with preparing a meal if you cannot cook a microwave meal, whereas currently you get points if you cannot cook a meal with fresh ingredients. Similarly for help with washing the questions, we’re going to change. I don’t know if any of this might be amended before it comes into operation. Benefitsandwork.co.uk has information on the website about the proposed new form, so it would be helpful to have a look at that.
Hi both, it's important to remember that no changes have been made to the benefit system quite yet, but we'd recommend everyone respond to the government's green paper on the proposed changes. Make your voice heard!
Hi Maurice it’s great that Mencap are campaigning on this issue. Clearly the government is desperate to find savings.
I’m sure you see the posts on here on other subjects such as social care assessments, LPAs and deputyships. There is so much bureaucracy and waste in the system, not to mention heartache for the families involved. We know the government wants to cut bureaucracy so why not listen to us on this and target these areas instead of benefits?
I’ve written to Mencap’s CEO to ask if he could facilitate a meeting between the ministers responsible for these departments and families so we can share our suggestions and stories but have not red diced a response.
Surely putting alternative ideas for savings will be a more helpful approach with the government?
Hello Shedman1 , appreciate your response. We're aware that the disability sector as a whole are definitely making raising those concerns and asking for government to look at exactly what you describe, suggesting alternatives to unfair cuts that will push more people into poverty.
This week our chief executive Jon, alongside other disability groups, met with Liz Kendall and Stephen Timms to put concerns directly to them, and from what I understand (obviously I wasn't in the room!) they were receptive and keen to look at ways forward working with us and other groups.
The most important thing to do though will be to respond to the government's green paper consultation and we'll be encouraging as many members of our community to do that.
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