Columnists, Direct Payments, Health, SEN Lawyers, special needs

Care in a time of coronavirus (ii): Using health direct payments to pay family members for care

This post has been written by Steve with the help of Alice Irving. Alice is a freshly qualified Barrister with a strong interest in public law. Before becoming a barrister, she was a law lecturer and anti-sexual violence campaigner. As well as studying law, she completed a degree in Community and Family Studies. She has also worked as a carer for adults with complex needs. She has a particular interest in advocating for the rights of those with disabilities.
care in a time of coronavirus

The current public health crisis is having a profound impact on children and adults with complex health and social care needs. Many of these individuals will be reliant on carers and support workers, who may have to self-isolate. 

Some children and adults with complex health needs will be classed as extremely vulnerable to Covid-19, meaning that they must stay at home for at least 12 weeks, avoiding all non-essential face-to-face contact. These individuals may wish to change their care provision in order to minimise the number of carers coming in and out of their home, if this is possible.

One potential solution to these challenges is for ‘direct payments’ to be used to allow family members to be paid to provide care. This post considers direct payments made by Clinical Commissioning Groups (‘CCGs’) to those whose ‘primary’ need is for health care. This will mean in practice that they have been assessed as eligible for NHS continuing care (children and young people under 18) or NHS Continuing Healthcare (‘CHC’) (adults aged 18 or over). A previous post considered when direct payments made by local authorities (for social care support) can be used to pay family members to provide care and support.

Direct payments under the National Health Service Act 2006

Direct payments for health care can be made to both adults and children under section 12A of the National Health Service Act 2006. The National Health Service (Direct Payments) Regulations 2013 set out the details of how direct payments can be made. Direct payments in relation to children or adults lacking capacity can be made to a representative (such as a parent), who must act in the child or adult’s best interests.

Before a direct payment is made, an agreement must be reached between the CCG and the person receiving care or their representative. This agreement will be set out in a care plan. The care plan specifies what the direct payment will be used to purchase; it also names a ‘care coordinator’ who will be responsible for managing the care plan.

Under the 2013 Regulations, a care plan can name a family member or friend of the patient who lives in the same household as the provider of a service. However, the CCG can only agree to this if they are satisfied that it is ‘necessary’ to meet the patient’s need for that service, or to promote the welfare of a patient who is a child: Regulation 8(5A). Regulation 8(5A) was added in to the 2013 Regulations and does not appear in the online version, so the full text is set out below:

(5A)   A health body may specify in a care plan that a service may be secured in respect of a patient from a connected person, only if a health body is satisfied that to secure a service from that person is necessary—

(a)  to meet satisfactorily the patient's need for that service; or
(b)  to promote the welfare of a patient who is a child.
(5B)  In paragraph (5A), “connected person”  in relation to a patient means any of the following who lives in the same household as the patient whether or not the person is a nominee—
(a)  a family member mentioned in regulation 7(8); or
(b)  a friend of the patient.

This is in effect the same test as that for direct payments made by local authorities – in short, is it ‘necessary’ for the direct payment to be used to pay a family member to provide care? Again, it is hard to think of a time where allowing family members to provide care could be more ‘necessary’ than at present.

Unfortunately, there is a hitch. A direct payment cannot be used to pay a family member or friend who lives in the same household to provide services unless this is set out in the care plan: Regulation 11(3A). Therefore, if a person’s care plan does not currently state that they can use their direct payments to pay family members or friends who live with them, they will need to request and negotiate a change to their care plan.

The position is different if a person wants to employ a family member or friend who does not live with them. In this case, the care plan does not need to expressly state that the family member or friend can provide services. The care plan might already be expressed in general enough language to allow the direct payment to employ a family member or friend to provide care. However, this will depend on precisely what the care plan says. Advice should be sought from an advice agency or if necessary a specialist solicitor.

How do you request a change to a care plan? 

A person receiving care or their representative can request a review of their direct payment arrangements: Regulation 14(7). The care coordinator, named in the care plan, is responsible for arranging reviews and should be contacted in the first instance: Regulation 8(3). The care coordinator should communicate with the CCG, who will decide whether to carry out a review. Following a review, changes can be made to the care plan. 

The CCG is under no legal obligation to carry out a review just because a review is requested – nor are they obliged to agree to a change in a care plan. Nevertheless, in the remarkable circumstances of the present time, we would strongly encourage CCGs to operate a presumption that reviews should be carried out and changes to care plans be made to allow for the payment of family caregivers. That is, CCGs should review care plans and allow changes to be made unless there is evidence to suggest that those changes are unnecessary. This would be consistent with the Guidance on Direct Payments for Healthcare (2018) which states that reviews should be proportionate to the person’s circumstances, and should place as few burdens on people receiving care and their representatives as possible: paragraph 180.

Important points to note about direct payments

There are five other important points to raise:

  • First, there is a risk that if family members are paid for care without the care plan being changed first, the CCG may require part or all of the direct payment to be repaid or may stop making direct payments altogether: Regulations 15 and 17. It will be important to look closely at the current care plan to determine whether any changes are necessary.
  • Second, family members who are paid from direct payments for providing care may find that this has a significant impact on their own welfare benefits if they have them. Family members who are concerned about this should seek advice from a citizens advice bureau or specialist charity.
  • Third, there appears to be no reason in principle why a parent or other representative of a child who receives direct payments on their behalf could not employ themselves to provide care, if this was ‘necessary’. However, parents or representatives considering this should seek a change in the care plan, so that it expressly states they can be paid for providing care. This will guard against potential allegations of conflicts of interest, or worse. 
  • Fourth, if a family are already using direct payments to employ paid carers, there may be employment law issues (as well as ethical issues) with switching the direct payments to employ family members to provide care. Again, specific advice will need to be sought, including potentially from a direct payment support service. It will be important to look closely at the contract with the direct payment workers before taking any steps to change the way care is provided.
  • Fifth, although the new Coronavirus Act makes some modifications to the NHS CHC duties for adults, it does not affect any of the statutory provisions above. 

The current public health emergency will require all parties to be flexible in order to ensure that children and adults with complex health and social care needs have those needs met. Allowing close family members to be paid for providing care may well be part of the solution. 

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Steve Broach
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