Making Sure the Benefits System Works for Everyone with Learning Disabilities

Over the last few years, PIP has replaced the Disability Living Allowance (DLA) for people aged between 16 and 64 living in England and Wales.  This has been disastrous for some families/carers of those adults with learning disabilities. 

This media campaign aims to highlight what has gone wrong and what can be changed to make sure that we are supporting families/carers and adults with learning disabilities.

“We are penalising our families/carers who are already saving the government huge amounts of money in care costs. If they were to place their loved ones in a care setting/supported living scheme this would be costing the government so much more in the long run.  Why are we so blinkered not to see this? I am contacted daily with people feeling deeply worried about these charges and how they are going to afford to live day to day.  This is and continuing to put many of the families we support into crisis. I would really like to see some changes with regards to these contributions as the ‘blanket one rule fits all’ policy doesn’t work.  Each person needs to be assessed individually.  No two people are the same and each family face different challenges daily.” Alison Halton (Mencap Learning Disabilities Advisor)


Maxine Norton Interview

Robert Norton Interview

Alison Halton Interview

Since the new PIP system has been brought in during the pandemic, each person who is receiving a care package from the local authority is assessed to contribute.  The local authority then calculates the contribution by considering all income, less expenditure, that is pre-determined by the rules set by the national government. 

There is supposed to be certain disability related expenditure taken into consideration, but this is very ambiguous as to what can be disregarded as these are predetermined in a way that rarely meets the needs of adults with learning disabilities. 


This is also different depending on the local authority as there is no rationale, no transparency and blanket rules being applied, which do not take into consideration the needs of our learning-disabled community. 

There is no awareness of the affordability concept and, in some cases, adults with learning disabilities have withdrawn from services altogether simply because they can’t afford the contribution.  This then puts them into a potential crisis.


All Local Authorities are asking for the Learning Disability client group to make substantial contributions towards their care packages and in many instances, this is putting families into hardship. 

The main area for concern is when a client still lives with their family/parents: some carers are reliant upon their cared-for person to contribute towards the home costs, and in many cases the carer has given up work to provide the care and they themselves are on a limited income. 


Contributions are regardless of package sizes, plus contributions have also been known to cost more than the actual cost of the care package provided.

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