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“I’m A Man Now”

February 9, 2016

A bit of an unusual post from me. It’s an interactive post. This is a shout out for your assistance.

Ever since I devoted a chapter to the subject in Get Steven Home, I have been interested in the developmental hurdle that lots of our young learning disabled/autistic sons and daughters encounter around 16 to 18. I have put out calls for anyone with an academic background to do some research into this subject. I have written umpteen blogs, musing the question.

A few weeks back, I had a dream where I woke up with the overpowering message “supposing nothing happens”. Certainly, nothing beyond the normal experience of any 16 to 18 year old. How comes so many people end in ATUs, or worse, dead?

I’ve decided to devote my next publication to the topic. At the moment it is still very much in the forming up stage but I see, at least, three key sections to the book:

  1. What does a “normal” post 18 life look like for someone with autism or learning disabilities.
  2. What happens when the world of adult social care enters your life?
  3. How does the medicalization of someone with autism or learning disabilities map out their future?

What I would like is to include your stories in the book. If you have been affected by any, or all of the three areas that I mention above, I would be delighted to hear from you. If you would like to contribute to the publication, please email me your contact details and I promise to get back in touch. My email is: markneary@btinternet.com

Thank you.

Mark.

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From → Social Care

10 Comments
  1. weary mother permalink

    Re the question around what happens when adult care comes into a families life: all can depend on the area one lives in?

    If one lives in an area where learning disability etc is given low regard and cuts have been harsh, life must change beyond all recognition.

    in the worst areas the LA will have reduced their in house headcount of staff to almost zero. They will use locums on short term contract as assessors or poorly qualified people with a fixed remit of reducing need. There is with kind of employment a lack of interest in or connection with the people being reviewed,and the always outcome is of much reduced support and quality of care The same LA will hire the cheapest agencies and where direct payments are accepted, likely to be the most beaurocratic in their chasing up paper from family.

    Then:. There Is the acute see image shock of finding we have less power to influence anything at all in regard of son and daughters life than the youngest or most recent or most ill equipped and or experienced, paid person who either delivers care or assesses care far less commissions care.

    The effect of deep loss, the taking of our influence to engage in care far less ensure safety of son/ daughter clouts all personal identity and our self perception around everything we are and have been; this,theft of our soul our core role as a ‘good’ parent is for ever life changing and health sapping.

    Perhaps the most common outcome from the change to adult care in this kind of LA is that you are in for a fight, and all the freely friendly offered suggestions and then eventually challenges you may be forced to make as a parent, within these localities, will see you marked down as troublesome.

    When they get it very wrong as they too often do, largely but not solely because of this kind of culture, it takes years to get the ‘we have learned’ (again) letter.

    Other families may have quite different experiences and will think that all the above must be wrong.

    • All this shows, as is the position now in most of England, if not UK ,all is geared towards removal of family care, to state care, in guise of independent/supported living.

      This is why support at home, is cut to bone, on the excuse of budget cuts,

      Which is nonsense, as £3,500 + is then paid to a private residential care provider.

      The crux of the matter is, that parents/family have no rights, cannot protect their loved one after 18, and have no say in their future care.

      The state have all the rights, and do not protect the disabled, let alone allow them a good quality of life, as we have seen.

      If parents do not agree, to anything, and everything, a MCA application, will be rubber stamped by COP, to enforce whatever assessments are needed, to gain evidence, that the ‘best interests’, of the disabled, is in commissioned private residential provision, over which, neither the disabled, nor their parents have any choice.

      • Finola – you’re doing it again. There’s an irony that you write on this blog of all places about the CoP rubber stamping dubious State decisions. It was the complete opposite in Steven’s case. Every part of the LA submission was dismissed by the judge. Of course what you describe happens & we have Shirley’s awful story to demonstrate things at their worst. But the Court also frequently rules against what the State prescribes and we don’t do ourselves any favours if we don’t acknowledge that. Rightly or wrongly, the CoP is the only avenue we’ve got to challenge State decisions and I think people need a balanced view of what happens there. Sometimes it’s shit: sometimes it saves the day.

    • weary mother permalink

      Yes., There are routes through,,,,

      They take a lot of tenacity and resilience, probably an on the hoof learned understanding of the system and if possible access to clued up contacts and then some luck luck too?. And all this circular challenging of illegal assessments,and decisions (while swallowing all the disrespect stuff) by whatever route taken,,steals chunks out of already demanded upon lives. And takes far too much from the lives of all the other members of the family, husband/wife and siblings too?

      But we still keep on for …….it is only just? And we cannot do less, if we can…?

  2. To Mark, to gain ‘a balance view’, as you say, we need information.

    We need, the number of s48 MCA applications, brought by each Local Authority annually, and the number of orders of removal against families wishes, and, the number of people registered as living in state commissioned care, away from their parents/family.

    Without such information, we cannot judge, what the courts are doing.

    We also have to question, the budget incentive, ie why so little support ,if remain with family, support after a carers assessments is discretionary, and, appears rare, but again we have no information.

    Support via day centres not connected with supported living, is practically non existent, as are overnight respite facilities. Why ?

    This lack of facility for the disabled living with family, mitigates against a finding under MCA, that it is in a persons best interest to remain living with their family.

    • Yep. Agree with all of that. It’s shocking how little statistical information is available. Without that, we just have our own anecdotal information which is wildly variable of people’s experiences of the Court of Protection.

      • But, I do feel one thing is for sure, as evidenced by budget cuts, and lack of facilities, there is a growing modus by all LAs and HSCTs, to only provide funds for supported living, which allows little, if no choice, for disabled 18 year olds and over, to remain in the family home.

  3. Jan permalink

    It is possible to have a successful outcome through the Local Government Ombudsman. Three years ago we managed to secure a housing association 2 bedroomed home (to allow for support) in our village with a lifetime tenancy. The plan for our son’s future independence was suggested by his care manager in 2009. At that time we registered with Homelink but had no intention of looking for a home at that time as our son wasn’t ready for independence from us. But the future plan was mentioned at all reviews/assessments over the following three years and in September 2012 it was written into his assessment that we (parents) would start looking for a home as our son was now ready to start the transition to independence (a necessary transition as myself and husband are getting older and we wanted to make sure we are still fit enough to help/guide the transition for our son’s benefit, being autistic any change has to be handled very carefully). In January 2013 we were lucky to be offered a modern 2 bedroomed home in our village, we were delighted as we felt our son would find it more acceptable to live in the community he had grown up in. However, once we had informed the LA that our son had been offered a home and would now require an increased budget for his already assessed 24hr support, the LA back tracked on everything they had said and tried to pretend that the Assessment of September 2012 was in dispute and hadn’t been signed, even though it was written up and sent to us for signing and duly signed and dated by ourselves and returned (we have a copy of all records through a FOI request). They also started to deny his support needs even though they had ‘shedloads’ of information on his vulnerability even a letter from their clinical psychologist saying should our son not be supported at all times he was in danger of being permanently detained in a secure hospital! Unfortunately he didn’t receive his Autism diagnosis until he was 25! And only then because we went privately. He spent most of his young life being misunderstood. However, to cut a VERY LONG STORY short, after three years of battling with the LA through the LGO they have finally ‘caved in’ and our son will ‘hopefully’ receive the personal budget he needs to have the 24hr support he needs in his own home and will also continue to have his choice of activities and access to the friendships that are important to him. Three Years of mind and body draining, exhausting, anxiety ridden, anger driven momentum and two Independent Assessments to get the LA to put in place what they had already assessed in 2012!!
    Three years of myself and husband living separate lives as one of us had to support our son in his home from 3.30pm until 9.30am the following morning 6 days per week. Anyway Mark, I hope this is a positive story for you and others.

  4. Shirley Buckley permalink

    all my dealings with the LGO since – my god its 2002 – thats 14 years, have been laughable. Pages and pages of nothing, and always an opt out. And for anyone who thinks the Court of Protection works, or the OS does his job, once again I quote Mr Justice Charles, vice preident of the CoP in his judgment of Sept. 2006 ” the Official Solicitor’s case was a shambles” This was Martin’s litigation friend. funded by tens of thousands of pounds of public money. Again I quote “the affidavit evidence rnnges over a number of areas. It has very little direct evidence in it and is a mass of hearsay……….also when the case began there WAS NOT A CARE PLAN” and so on. Also when we talk of the MCA and dols it is an Act that is not fit for purpose.

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