The Deputy Minister’s update statement on the Welsh Independent Living Grant[1] (WILG) is particularly welcome because it acknowledges the risk to the independence,choice and control of disabled people in Wales unless the Welsh Government enables people in receipt of either a Joint Package of care funded by the Local Authority and Local Health Board or NHS Continuing Health Care to receive a Direct Payment.

This risk to independence has been known to Welsh Government for some considerable time,[2] has been identified in a ‘direct payment note’ on Rhydian Social Welfare Law in Wales and highlighted as a risk in a paper on the Closure of the Welsh Living Grant that was offered as evidence to the Petitions Committee dealing with the Save WILG.

While it is heartening that the Deputy Minister ‘has instructed her officials to undertake a review of the Direct Payments and CHC interface’ one could argue that this is very late in the day. It would be hard to convince disabled people and their carers that setting up a system that enables them to have meaningful and personal control over key elements of their care package will compromise the principles of a public service NHS. The time is ripe to redress this lacuna which has this potential to derail Welsh Government commitments and aspirations for disabled people in Wales.

Recipients of the WILG require immediately the confidence that they can continue to retain the right to have personal assistants of their choosing irrespective of whether the funding from the LHB is a proportion of the cost of the care and support package or whether it is a NHS CHC funding arrangement.

There are those people who are not previous recipients of the WILG but who are fearful that their future is in the hands of local government and local health board officers who erroneously believe that Direct Payments cannnot be facilitated.They require an unambiguous statement from Wesh Government that all Local Authorities in Wales and all Local Health Boards are required to facilitate a joint package of care through a Direct Payment as set out in Continuing NHS Healthcare: The National Framework for Implementation in Wales[3].

In the absence of legislative change Independent User Trusts (IUTs) should be offered to disabled people and facilitated by the Local Health Board, to enable a person who has become eligible for NHS CHC to consider this option and its suitability for his/ her circumstances.

While we await a successful conclusion of the review set up by the Minister, there needs to be measures in place to enable disabled people in Wales to achieve their personal outcomes and maintain their independence. Welsh Government commitments and aspirations to Social Model of Disability is currently being shown to be hollow when the level of physical impairment and health related needs determine whether a disabled person in Wales can have control of their care and support arrangements through a Direct Payment.

Local Authorities and Local Health Boards need practice directions from Government and training in this matter if we are to avoid further human rights infringements in Wales.

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[1] Julie Morgan AM, Deputy Minister for Health and Social Services Written Statement: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments (Welsh Government 13 February 2020)

[2] See for example letter Welsh Government Director of Social Services and Integration dated 10 February 2016.

[3] Welsh Government Continuing NHS Healthcare: The National Framework for Implementation in Wales (2014).