I’m sorry to hear that you are struggling to get financial support for your son to cover his additional continence and dietary needs. Unfortunately it’s not uncommon for different authorities (such as NHS trusts and social services) to disagree over who should pay for what, so people like your son can often lose out. I have some general information which might help:
To clarify, all NHS care is free at the point of delivery and so any NHS funded care and support your son receives will not generate any charges. Social care costs may be charged depending on a person’s financial circumstances and your son should have a finance and benefits (FAB) assessment to calculate if he should pay towards his social care costs.
Assessing contribution to care costs:
There is more information about charging for community care on this link: https://www.disabilityrightsuk.org/charging-community-care
Unlike NHS, care and support is not a free service, so your local authority does have the right to request a contribution from you depending on your financial circumstances. While the councils have the power to charge individuals receiving social care, the Care Act specifies that people will only be asked to pay what they can afford.
Once income and outgoings have been taken into account, the council must make sure the charges are “reasonable” in terms of the kind of service being provided and are not above the cost of providing the service. This means the local authority cannot make a profit from charges for services.
Even if you can pay the charges decided on by a local authority, the council cannot force you to pay if this would leave you with too little money to live on. The law states that paying towards your support should not leave you with less than a stated amount. This is called the minimum income guarantee. Minimum income guarantees are listed in section 7 of the regulations here: http://www.legislation.gov.uk/uksi/2014/2672/pdfs/uksi_20142672_en.pdf
The guideline for minimum income guarantee is the equivalent amount of income support plus a buffer of 25%. Income support is currently £57.90 for under 25s and £73.10 for over 25s.
Disability related expenses (DRE):
The following is taken from Disability Rights UK ( http://www.disabilityrightsuk.org/charging-community-care )
Local councils should make an assessment of your disability-related expenditure and allow you to keep enough benefit to meet any needs not being met by the council. The local authority needs to take into account any Disability Related Expenses (DRE) you have when carrying out the financial assessment. The DRE is any additional expenses incurred because of your disability. This can include laundry costs due to incontinence, high heating bills (if, for example, you have poor blood circulation), accessible taxi fares costs, equipment, essential dietary requirements costs, special clothing (because of wear and tear), internet costs, therapies. You should try and make a full list of all your disability related expenses if you are having a local authority assessment. Any requested contribution to costs needs to be reasonably practicable for you to be able to pay.
It might be useful to contact your local Healthwatch: https://www.healthwatchessex.org.uk/
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I hope that helps,