I have shared a letter below written by my friend and comrade Sheila Meadows OBE who started the fight to support disabled people with high care and support needs long before I appeared on the scene. Together we have been fighting for disabled people’s rights for over five years now.

She is responding to the letter I received from Huw Irranca-Davies last week. This can be viewed in full here.

I will write my own response to this letter shortly, but I doubt that I will be able to add much more than Sheila has already said. The following letter encapsulates all that we have been trying to get across, but the folk at Welsh Labour seem to lack the humanity and humility to listen and admit that they will need to revise their plans to close WILG before it is too late…

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Dear Mr Irranca-Davies

Thank you for your letter to Nathan Lee Davies. I will respond on a few points which I hope will contribute to the discussion and I ask you to respond to the final point so important in our discussions, but not addressed in your reply.  I refer to the triangulation we spoke at length about – the need for a third independent person or group with power who can mediate between the Local Authorities and recipients should this prove necessary.

You Wrote: …”separate public consultations held in 2014 – one for recipients and the third sector, and another for local authorities on the principle of four potential options for future support arrangements for former recipients of the Independent Living Fund (ILF). I would like to assure you this was not the case. Only one consultation was held with all the responses considered together.”

What we raised was that the analysis of the responses from recipient, third party organisations, etc. and LG were considered separately. Social Services responses indicated their desire to run the future ILF. This was supported by Welsh Government.

You Wrote: …”As Sheila may recollect as a member of the stakeholder group who advised Welsh Government, when the detail of how a resulting shortlist of options could be implemented that option was indeed considered further.”

Yes it was discussed further and the views of the SS representatives and LA were supported over the voice of the recipient.  I used to travel back form Cardiff feeling that I and the voluntary organisations had been able to convince the civil servants and others understand the problems we would face if the funding and decisions were left to our Local Authorities alone. The SSWB act, all assured me, would protect WILG recipients to live independently.   I was not then and have still to be convinced.

You Wrote: …”In addition many were concerned that the increased numbers of disabled people in Wales, who local authorities could claim funding for from the scheme, would result in the threshold to access this system having to be set at a very high level in order to make the scheme affordable.”

It is interesting that you highlight this particular issue as this was about the only issue we all agreed on, but not in the form you recall it.  As social services in the local area must fund or ensure the support of all disabled people who qualify for services, then it was seen by the whole group as fairer across Wales to have a higher threshold set. All agreed that the threshold was too low and would need to be raised considerably, but all felt this would be fair. 

• When someone required a very large package of care the LA  could turn to a central source for financial support
• It would also prevent local authorities ‘upping’ the cost of care provision to qualify for the enhanced payment which we know was done to attract ILF when central government ran it.
• It was also seen as making it an ’All Wales standard’ of eligibility for enhanced care packages for those with the greatest disabilities.
•  It would also have brought in one of the most important elements, someone/group, who would sit outside Local Government to monitor and mediate and ensure fairness across all authorities. 

Which brings me to my final comment; Nathan and I tried very hard to explain the importance of the ILF social worker in assessments and provision. They would hold LA to account if they were not fulfilling their agreed part in the contract and would also be equally determined that what the recipient or appointee had agreed was also being carried through.  Now if LA decide on a plan for you or in my case my son and I don’t agree, who do I turn to?  If my son is likely to suffer physically or mentally because of a decision, then I can complain but to whom?  To the LA?  How can it be possible to complain to someone about themselves and expect a reasonable outcome? Both Nathan and I thought we had explained this issue very fully with Mathew Hall, Head of Policy Division, but this issue is totally ignored in your letter. Once again, I am faced with the same issues, we have meetings, think the Civil Servants have listened and heard, but find the issues which they don’t fully understand, or unable to find a solution are  totally ignored.  I can understand that you don’t agree with my view but I feel there is a need to respond to the most important issue brought to the meeting.  We called it the ‘Black Hole’

The need for an independent third person is vital. After your visit we did get the letter you sent to Wrexham in November, thank you, it arrived in the middle of February!  Without your direct intervention would this have happened?  I am sure you will not want all such issues to be brought directly to you but to what other support do we turn when the Local Social Services are struggling and unable to communicate with us or support us.  You are aware of our experiences, is it any wonder we cannot trust Local Authorities on the future of WILG recipients to be able to live independently with adequate support? 

With thanks

Sheila Meadows