P-06-1404 Increase clarity and rights for people on direct payments or WILG to live independently – Correspondence from the Petitioner to the Committee, 18 June 2024

Update to the Senedd Petitions Committee:

1. The fundamentals of my Petition and campaign remain true.

2. It has been very useful to work with the Health and Social Care Committee on the Health and Social Care Bill. I have made a verbal contribution and am in the process of making a written submission by 28-6-24.

3. Whilst this is useful my campaign isn’t on all fours with the Health and Social Care Committee.

4. Under this new legislation Local Authorities may lose a tiny % of their social care /Direct Payments money; but they will keep the lions share. They are not being challenged on the principles of the SSWBA 2014 legislation. My question: Where is the challenge?

5. The new legislation seems to be focusing upon finance and potential money savings, either to the Local Authorities or to the Welsh Government. But there is no focus upon the distress, and the eternal struggle of those who are disabled and trying to cope within the current systems.

6. We have zero power and control over the Direct Payments and no one to speak up for us!

7. We need an advocate or a third party intermediary (tripartite system) to fight our corner against the Local “rogue” councils who seem to have a will of their own and they can operate almost unchecked at every stage of the disabled person’s journey. My question: How can we call them to account?

8. Wrexham LA are still pursuing me for £1,314.01 of Direct Payments as we speak. This is money I reasonably thought I could spend on general day to day disability related costs for myself and my PA staff team. My question: We need clarity over the control and spending of Direct Payments money; can the Committee pursue this please?

9. I am thereby being hampered in running my small business (self employed) effectively on a day to day basis by the local social services department.

10. Amid this “clawback” of money the Local Authority Direct Payments department are seeking to increase my personal contribution to my Direct Payments from £35.15 per week to £100 – the maximum figure allowed. This is outrageous and totally beyond my financial capacity based upon my disability related welfare payments.

11. I struggle with ongoing battles over the construction of my Care and Support Plan on a yearly basis. Nil “co-production”. Contrast the speed of the Direct Payments department pursuing me, with the slowness of the social care department, ignoring me – these two departments from the same authority are not working in concert, but effectively undermining me at every turn. Between conspiracy and incompetence, I edge toward the latter. My question: What can be done to resolve this organisational failing?

12. Contrast these contrast these malign developments with the positive developments emerging in Scotland, where they have re-launched and extended their Scottish ILF (Independent Living Fund) in the past 2 months. In Scotland the ILF recipients are able to spend their Direct Payments much more creatively so as to boost and enhance their lives. They appear to have real voice and control, wellbeing and “co-production”. My question: Why can’t Wales adopt a similar approach to that taken over the border in Scotland with the ILF?

13. Personal update: Last month I took my “short break” to Florida with 2 PA’s for 6 days. This has helped me to clarify my thinking. This trip was ultimately funded by the public when, in desperation, I set up a “Go Fund Me” page. The public response was overwhelming and gratifying, but in effect the public have had to pay twice for me to enjoy a short break.

Nathan Lee Davies

18-06-2024