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Making care fair

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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 needs to be changed to make sure that families/carers and adults with learning disabilities are being given the best support possible.

“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 by people feeling deeply worried about these charges and how they are going to afford to live day-to-day.  This is 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 faces different challenges daily.”



- Alison Halton (Mencap Learning Disabilities Advisor).

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Since the new PIP system has been brought in each person who is receiving a care package from their Local Authority is assessed to contribute towards the cost.  Local Authority officers then calculate the level of contribution necessary by considering all income, less expenditure, that is pre-determined by the rules set by the national government. 


Certain disability-related expenditure is supposed to be 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. 

Each LA applies its own criteria which means that it is hard to understand the rationale applied.  There is no awareness of the affordability concept and, in some cases, adults with learning disabilities have withdrawn from services altogether simply because they can’t afford the contribution.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 and their families 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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