Hearing rumours that Mencrap have lined up a ‘Five years since the Winterbourne View Panorama film was screened’ media thing. Tomorrow.
Sigh.
Really?
What do they actually do…? (Serious question.)
Brilliant journalism uncovered scandalous, horrific, abusive practices in a (privately run) assessment and treatment unit in Bristol back in 2011. This generated a moment that led to a mass signing up of pretty much everyone/organisation connected to learning disability in the UK. To what turned out to be a combo of earnestness, pomp, ridiculous bureaucracy, ultimate pointlessness and ill thought out promises. At enormous cost.
The Winterbourne View Joint Improvement Programme (WVJIP). [Shudder].
A programme that gradually petered out into a Bubb’s breakfast. The 50 odd signees remaining largely silent on their collective failures.
We’re left with a handful of dedicated and deeply committed staff at NHS England sticking their fingers in various life dykes with the support of pockets of dedicated and deeply committed groups/individuals across the country.
Pretty much the same number of people continue to (not) live impoverished (and brutalised) lives in assessment and treatment units across the country as there were in 2011. Many, many more are leading impoverished (and brutalised) lives in independent supported ‘homes’. Some of which are run by Mencap.
Winterbourne View has remained the cultural touchstone for repeated and deeply serious failings in learning disability provision. Why? I suspect partly because it suits Mencap. A quick win for (vacuous) media coverage. And partly because it was run by a private (not NHS) provider.
What was exposed at Winterbourne View was barbaric. The publication of the Mazars review in December 2015 flagged up so, so much worse. The systematic ignoring (or worse) of the preventable deaths of learning disabled people by an NHS trust. Less than 1% of unexpected deaths were investigated.
Less than 1% of unexpected deaths were investigated…
The response of Mencap to the Mazars publication? Puffery about Mencap greatness. Shockingly and deeply inappropriate.
*Mencap’s repeated and self serving focus on ‘Winterbourne View’ further demonstrates the gap between Mencap and the people/families they claim to be the voice of. Learning Disability England is being launched on June 14. Reclaiming ‘voices’. Thank fuck.
mydaftlife 
With the present system of no oversight, no accountability, and excluded, impotent parents, it is highly likely, that many have suffered, and suffer tonight, as the poor young lady under the chair did in Winterbourne, or worse, see Thomas Rawnsley.
And worse still, these 18 +s have been torn from loving parents, who remain destroyed, and have no rights, even to know what is happening to their children, see comment on my latest blog post.
The simple truth is, the government policy, is to remove all 18 +LD/Autistic/Vulnerable, to private venture capital backed Winterbournes for life, with all services unaccountable and in secret, with parents excluded, and gagged under MCA.
What horror for the occupants and their parents for life.
What remains a mystery, is why Panorama commissioned this undercover documentary, when there had already been complaints to managers and CQC, of longstanding on going abuse and nothing had been done.
Yet taskforces, in the guise of assessments and safeguarding are placed in the family home.
If Thomas Rawnsley had been treated in anyway like he was in his independent living in his family home, they would be prosecuted ,and he removed, yet he remained in the placement and died, as did the girl under the chair until after the Panorama programme.
I suppose the dice was thrown when the person bullying CQC NED Kay Sheldon ( represents MH on CQC Board) “saying I believe she had mental health problems’ was Dame Jo Williams who was Chair of Mencap and went on to work at CQC. Ironic eh! Talk about perpetuate the stigma.
Fact that Kay Sheldon seems fragile on the Board at CQC esp when asked to represent MH Issues could maybe be a throwback to the way she was treated?Not sure!
Allegations of mental health problems was the way the Soviet regime dealt with dissidents and ubiquitous in early dealings with NHS whistle blowers. Evil is not imaginative.
Until Mencap sort out their own care homes, they can’t claim to speak for people with learning disabilities. And actually they aren’t ‘the’ voice’ anyway as they like to think, but might be ‘a’ voice at best.
And no one’s sure what Mencap do, apart from clubs, some care homes, and giving talks on setting up Wills and Trusts, advertising their own services, which charge a lot for overseeing Trusts.
When G was first diagnosed, one of the things we thought was, we ought to update our wills, just in case. At that time, we were unclear as to the possible extent of G’s learning disability, so were unsure of the best way to proceed, bearing in mind that we also had another, non-disabled and at the time very young, child to consider. In a certain amount of distress and confusion, I contacted Mencap for support, and was sent a face-slap of a booklet which seemed basically to be saying, “Just leave all your money to us”. We didn’t, and I’ve not bothered with Mencap since. The generic (and, frankly, grasping) nature of the organisation’s response sent it straight into my mental ‘no second chances’ corral. Wouldn’t have trusted them with a button, never mind a legacy.
Glad G can look forward instead to the chance to be part of an organisation that will be truly user-led and run. It had better be, because as long as I’m spared, I’ll be watching…
We thought the exact same for our son, must get a Will. We didn’t have one when O was diagnosed at 3. Got the Mencap pack and agree, it was just too much and a load of baloney about leaving your money etc.
I agree, I attended one of the wills and Trusts talks many years ago.
I too heard a pitch on ‘leave it to us’. Over the years I heard families say that once money given to Mencap it could be difficult to access. It became part of a general discretionary Trust fund where others could apply, and Mencap – the Trustees – had a veto on whether money got paid out. This was not made clear in the talk I attended. All was reassurance, and ‘trust us we are Mencap’.
Discretionary Trusts can be set up with a solicitor, with named family/trusted Trustees to manage it. No need to hand it over to Mencap.
Exactly.
Parents really do need help with the minefield of wills and trusts, but I felt fairly unhappy with the terms of the Mencap set up too, not to mention a kind of moral pressure to include them as beneficiaries. Like most hard sells, it sounds good – anyone any experience of how it works?
Not As Most Would Hope, it seems, given what Trudy found out about how the Mencap Trust actually operates. Better to take legal advice from a solicitor, IMO: after all, if you can afford to leave enough to make a discretionary trust worthwhile, you can probably afford to pay a solicitor to draw up something suitable.
Reminds me of a time I worked briefly for a well-known charity for senior citizens, which had a scheme whereby frail elderly people would have a lifetime entitlement to care in one of the charity’s residential/nursing homes – in return for signing their houses over to the charity. The catch was that unless your house was worth megabucks, you wouldn’t be accepted on to the scheme. Most of the people taken on had big family homes in the Home Counties countryside. It was very seldom that a person’s capital came anywhere near to being used up in care costs; the terms of the scheme ensured that a very tidy profit indeed was the norm.
My understanding from a family who have done this is: Go to a competent solicitor and get your will drawn up with a discretionary Trust as part of the will. A bit more expensive than ‘normal’ will, but should not be greatly so. There are additional legal costs in setting up Trust on death. Family homes can be pretty valuable these days so, a discretionary Trust as part of a will, is well worth considering ?
A discretionary Trust is where on death a sum can be placed in this Trust, to be managed by Trustees on behalf of a number of named people or groups, all of whom can draw on the Trust fund…..at the discretion of the Trustees. The Trustees can be siblings or trusted friends, plus a solicitor if desired; a solicitor Trustee is not essential. A solicitor will draw ongoing fees for being a Trustee and charge every time Trustees discuss or meet to agree drawing down cash for a beneficiary. Heard it can get very pricey if solicitor is maintained as a trustee. But all is personal choice.
Once the cash is in a discretionary Trust, all power over cash is with the Trustees. If the ‘wish’ for the discretionary Trust in the will is for a charitable Trust (Mencap for example) to administrate it, then their Trustees will manage the ‘wishes’ in the bequest at their ‘discretion’… and this is where ‘issues’ could emerge ?
as a family we were in the process of establishing a discretionary trust when our daughter died. The trust we envisaged doesn’t exist. Funds must be for the intended beneficiary but may benefit others as a protection against all means tested benefits being lost. The trustees were an issue due to our family solicitor being near retirement and family were not inclined to be involved in the set up or future running of a trust. Set up costs were at around £160 per hour and three hours only covered basics. Leaving a letter of wishes regarding your child is just about all you can do besides the will. Our understanding was the fund avoided a challenge from the LA against there being a lack of provision for a disabled family member . Trustees would not oversee care packages in any way and funds were most likely to be allocated for essential house repairs and ‘ extras ‘. Administration costs would run at the going rate per hour of the partnership and so in reality funds needs to cover a significant cost for management. Care provision for the future was an entirely separate issue. Extras were not our worry, 24/7 support for independent living was , we could leave the family home and some funds which I appreciate was a blessing for us. LA’s do challenge wills.
I have a discretionay trust for Martin,I am a trustee, together with Martin’s brother and a local lawyer. The Trust was set up by a learning disability expert solicitor, who has since died. Everything you state is correct. However, since my solicitor died there is hardly anyone who has expertise in these matters, and since the MCA came into place, everyone avoids it like the plague. The LA will challenge anything to get hold of more money. As well as the Trust, my solicitor set up an EPA for Martin, with me as Attorney. This was ideal (no longer available, replaced by LPA) as it gave me rights over Martin’s benefits while still empowering him. However in March 2014 the LA over ruled the EPA (totally illegally) and are now appointee (totally illegally). All Martin’s benefits are now paid to the LA (totally ilegally). Although Martin is under Continuing Healthcare the LA are taking £8O a week from him (totally illegally) towards his residential care home fees. Sorry this is long winded but read it and BEWARE. “They” are out to get you, come what may. Incidentally the residential care home fees are £2400 a week, and, guess what, it is in Wales.
Yes, Shirley. All is relentless removal of individual autonomy, and, any choice, in favour of total state control, and no rights for family, or the deemed ‘vulnerable’ , over, not only their lives, but their property.
This is why the MCA was passed, and the Court of Protection created.
That was back in 2005, by a labour government, who planned to make huge private profits and incomes, from the policing of millions of people, who would be processed through this system.
The only system, of its kind in the world. In breach of all human and property rights.
For huge unaccountable profits.
Before the Act, a vulnerable family members affairs, could be dealt with via, as you say and had, an Enduring Power of Attorney.They had protections under the Public Guardian Office and as you so rightly say, if they had property, this was protected by a Discretionary Trust.
The MCA is effectively, the hijacking/lynching of private property and lives, by the state for their own profit.
No longer can a family, or vulnerable, have a private life and arrangement. Once you are on their radar you are harvested.
Discretionary trusts become pointless, if any advancements from them are seized by the state, their only use now would be protecting a vulnerable’s assets from the state, which defeats their purpose.i
The basic, crucial point to grasp, is that no matter how much money is put into a Discretionary Trust, it will not ensure proper future care of your loved one.
As, once your loved one, is under the control of the Court of Protection under the Mental Capacity Act , they, the state, via the local authority and health trusts control every facet of care.
Your child, parent, spouse, becomes a commodity for whatever ‘care’, they choose, and they oversee it, so there is no accountability, and it is in secret.
There an be no complaint, as details of service providers services are gagged under COP on grounds of privacy.
And who could or would complain?
And, this ‘care’ provision, will happen, no matter how expensive the care, or how many private safeguards to ensure adequate future care a family put in place.
This is the reality, and horror, family members now face.
agree, it feels a little better to make plans that include leaving the family home/garden to your child. Spending time making the environment as future proof as you are able in your lifetime lessens your fear . Healthy/wealthy friends and relatives imagined a call to adult social services after our deaths would have been all that was needed to ensure some independent advocate stepped in to assist our daughter alongside the trustees. The reality is as you state, bricks and mortar/funds and trustees will not ensure proper future care. I am only swayed by charities as trustees in the hope it ensures advocacy for care provision. Eyes and ears at least when no other family/friends remain.
But such charities, eg Mencap, are mainly financed by the very government, who will be promoting and instigating, ever more efficient profitable care for your loved one, with at very most, tick boxed protection/check, from the very local authority that commissioned them.
And, being registered as a charity, does not, as we have seen, with the many highly publicised scandals ensure integrity. They are now run as businesses, on a sustainability basis, albeit their profits are recycled, hence their managers/directors huge salaries.