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Steven Gets A Home

October 12, 2013

The last four days have been the craziest since Steven was away back in 2010. Huge highs and big lows, all in the space of 10 minutes at times. I’ve gone through a whole range of emotions from relief – rage – fear – excitement – real pride. And all of them are still hanging around. But for all the bad things I write about in this post, the most important thing is that after a year of endless battles, Steven has finally got a home. Hillingdon have been at their worst with terrible duplicity and abuse of Steven but at the end of the day, I’ve succeeded in getting him the security of a home for his future. It may only be temporary accommodation (3 to 4 years) for the time being but it has got him into the housing system and makes it a little bit harder for him to be removed, should anything happen to me in the future. He will lose a large chunk of his damages in the process but for me, the financial loss is outweighed by the security gain.

So, how did the week pan out…….

Tuesday:

I received an email from Hillingdon informing that they have “sourced settled temporary accommodation for Steven” and inviting me to a viewing the following day. The email took great pains to point out that this isn’t a property owned by Hillingdon but owned by a housing association. I didn’t realise the implications of this at the time.

Wednesday:

My sister and I arrived for the viewing and met the manager of the housing association, who showed us around the house. It is a 2 bedroom property, with a large lounge and a garden. Quite frankly it is ideal for Steven. It is the right size. It is near his beloved Uncle Wayne. And it is very close to most of the places he goes to during the week. Credit to Hillingdon for finding somewhere that as the top of our list, location wise. Having done the guided tour, and having made the instant decision to accept the tenancy, the manager invited me back to his office in the afternoon to sign the contract and collect the keys. It was that quick! As were finishing a guy from Hillingdon’s housing team turned up, along with Steven’s social worker. Then came the bombshell. My sister asked the question that it didn’t occur to me to ask because as we’d applied for social housing, I’d assumed the rent would be at that level. I was informed the rent was £228 per week. More than we are paying at our current privately rented property. I said, that even with what I could contribute to the rent, there is no way that Steven could afford nearly £1000 per month. The housing officer then glibly said that Steven will have to use his damages to pay the rent until his savings drop below the housing benefit threshold. I said that I couldn’t agree to that and the meeting dispersed as everyone got on their mobile phones, frantically phoning their managers. They promised to phone me back later that day to see if there was anything they could offer to help.

In case you’re wondering where I am in all of this – it is Steven’s house and rightly so. At one point the social worker decided to explain the set up to the man from the housing association – “Steven is going to need a 2nd bedroom because he is going to need 24 hour live in support for the rest of his life and at the moment, that person is Mark”. I realised by the end of the meeting that there had been absolutely no mention during the hour we were there that I was Steven’s father (from the professionals anyway). It wasn’t surprising because over the last few weeks I’ve been categorised as: “live in carer”; “not a member of Steven’s family” and “an important part of Steven’s circle of support”. That’s the way it is for families of the adult learning disabled are nobody.

My sister and I ended up in a pub, angry and despairing at this latest twist.

Thursday:

Throughout the day I spoke to lots of people, getting their input into what decision should I make. Friends, family, legal and housing friends that I have made over the past three years all had valuable contributions to make and by talking it through so many times, the right course of action started to crystalise in my mind. By lunchtime, I had decided to accept the offer but wait until Hillingdon contacted me to see if anything had come out of their meetings.

A bizarre distraction occurred when I picked up a voicemail from one of the social care team. She told me she had to do Steven’s FACS reassessment and the outcome would be that, because of his damages, he would be liable to pay for his full care package (approx £2000 p/w). It stopped me in my tracks I can tell you, thinking that his whole compensation would be gone before he even moves into the house. It’s funny how they always make these advance decisions – Steven hasn’t claimed housing benefit yet but already I’ve been told they will take his damages into account and disqualify him from benefit. Now, even though he hasn’t had his care needs reassessed, I’m being told that whatever the outcome, he will have to pay the full cost of the package. This takes me back into Mad, Paranoid dad territory and throws up the thought that they must sit it in a meeting room and discuss these strategies beforehand – all under the heading: “how are we going to deprive Steven of his damages and screw with the Nearys”. But then blow me down, twenty minutes later, the woman phoned me back and told me to ignore her previous message – she had made a mistake. I could have told her that – the judge in the damages court order specifically states that Hillingdon should not use his damages when calculating his care package.

Nobody else from Hillingdon phoned during the day, so I never got to know if they’d had a meeting. But the pause, enabled me to become more sure that I was doing the best thing by Steven.

Friday:

Firstly, I received confirmation that Hillingdon are treading on very thin ice in disallowing Steven from housing benefit on the basis that his damages award preclude him. I was contacted by someone who had been through a similar situation and she won her case on the basis of – “a public authority must not seek to profit from its own negligence”. Well that certainly applies to us. I know that Hillingdon will just ignore me if I point that out to them, so it will mean making a claim, them turning Steven down and then having to go through the lengthy process of an appeal again. And in the meantime it won’t stop his money shrinking as he pays the new rent.

Then I picked up a gobsmacking voicemail from one of their housing officers – the housing association had accepted my offer and I needed to meet them on Monday to pay 2 months deposit. So, that’s another £2000 gone before we’ve even started. I phoned him back and checked out the deposit with him – “Is that normal? Someone applies for social housing, gets placed in a housing association property at rents higher than the local private rental market and then has to pay 2 months deposit at those rates. How on earth do other people afford it?” I knew he wouldn’t be able to answer the question because I truly believe they are making this up as they go along. Ten minutes later the manager of the housing association phoned and it may be me, but he seemed a little surprised when I mentioned the deposit, although he didn’t deny it. We set up a time for Monday for key collection.

As we finished talking, I got off the bus back in Uxbridge. I didn’t have to be home for an hour, so popped into the bar for a drink. In the time it took me to order a drink and some food, he was back on the phone – “Good news Mark – Hillingdon have just phoned me and they have agreed to pay the deposit”. What on earth happened in those ten minutes! How could the position change so quickly in such a short space of time? Although it was exactly like the day before and the very sudden u turn about the care charges. You see what I mean about them making it up as they go along.

So, there we go. Contract and keys on Monday and Steven can move in as soon as he likes. He will be £7000 lighter, but what the heck. The rent on our flat is paid up to 14th November, so we don’t have to rush and it will give me time to decorate the new house and buy the other things that are needed. Steven’s future now opens up and I hope it is a good future, a safe future, a future where his quality of life is as good if not better than what has gone before.

I haven’t told Steven yet – just in case there is another horrible twist to the tale on Monday. Ever since the expected move didn’t happen in August, we have the following conversation:

Steven: “Want to move to the new Cowley house?”
Me: “Can’t move yet Steve – the men are still painting the walls”
Steven: “And we don’t want to scratch our arms on the sharp bricks”.

And he’s accepted that (sort of). But as long as I get the keys on Monday, I’ll take him to see the house on Tuesday and let him start planning. It’s a sign of the times that although it’s his house, his future, he is the last person to know. The whole move has become so knotted and uncertain that to tell him more is the worst thing you can do to a young autistic man for whom uncertainty is the biggest source of anxiety.

Postscript:

It’s been a very poignant and emotional afternoon. Steven has been nagging me for months to get his mother to bring the four videos we have of his school Christmas plays from his time in primary school 1997 to 2000. She brought them yesterday. So, today Steven and I sat down to watch the 1997 show when Steven was 7. He had quite a big part as one of the Bananas in Pyjamas. My attention kept moving from the little boy on the screen and the big man sitting next to me on the sofa. On one level, he is completely different – he understands himself and he understands the world so much more than he did in 1997. But at the same time, the rawness of his vulnerability is still there. I’ve written before – who safeguards our guys from the professional safeguarders? The most important thing is that Steven now has a home of his own but it’s come at a price and not just the £7000 of his compensation that Hillingdon have managed to get back.

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17 Comments
  1. sparrow permalink

    Hi Mark – really really pleased for the both of you. As you say, bitter-sweet. I always hate it when “the authorities” exercise power over the individual to that individual’s detriment. That puppet on a string feeling. Anyway, enough of the moaning. Massive step forward. Certainly a very big turn for the better and not before time!

  2. Magi permalink

    Hillingdon giveth and Hillingdon taketh away then! Hope you both settle in your new home, excellent news (in the end) xxxx

  3. Tim F permalink

    Ok, so there is a huge sense of relief and I feel that Mark and celebrate with you, So why am I crying. It because it feels like the bully saying, OK, eat my shit and I’ll leave you alone. and you eat his shit and now he’ll leave you alone. Hopefully. Oh the relief, but he still made you eat his shit. Half Full Half Empty, don’t know, Just make it as beautiful a home as you can and don’t forget for Steven that more than a new bed, new paint, no leaks, new…….the deepest,richest beauty that he’ll have is that your his father, you’ll be there for him as always and your f*****g amazing.

    (do pursue them on the ‘not allowed to profit’ though, the bastards.

  4. Liz. permalink

    Surely having somewhere to live is part of his care? (In the real world I mean, not in the “We will find a way of charging you for something version.”) The rules on charging and disregards are a complicated mess, wrapped up in Sections 21 and 29 of the Chronically Sick and Disabled Acts somewhere. FACS is supposed to be based on CRAG, and that clearly states that funds administered by the CoP have to be disregarded. It will depend on what your CoP Court Order allows you to do.

    Still, It sounds nice, and it will be good for Steven to feel that it is HIS.

  5. duncfmac permalink

    Happy for you both but what mean, if predictable , treatment from Hillingdon. Shame on them!

  6. Mark,
    This must come as a certain amount of relief, even though it is wrong in so many ways. Your telling your and Stevens story really brings home the reality of the struggle you and thousands of others go through on a daily basis.
    Stay strong, you have many “friends” out here in the blogosphere and I am sure, that, like me, they are appalled at the lack of care the professionals are able to give.

    Keep writing. You are an inspiration to so many.

    Nigel

  7. Weary Mother permalink

    The pen may not be better than the sword in all occasions, but in your and Stevens’s case it is changing more than you know. I found your blog only recently when I had/have been involved in something very similar to your energy consuming, life consuming agonisingly personal fight to protect your son. Your blog is keeping many of us on our track, on the days when we have nothing left to fight back with. . There have been times where I have lost my cool and have lost out for my son by giving his LA a big fat verbal poke in the eye. They wait for it, and then they can call us unreasonable or unhinged!

    You are a David with a pen and a huge gift with words, and Goliath is weakened with each of your blog’s.
    Thank you.

  8. Debra permalink

    Mark, I too find your blog such an inspiration to keep going myself for my own son ,but it also deepens my mistrust of the so called professionals who always seem to have the final word – even when they are wrong. This is why we have to keep on challenging them, regardless of the risk we get labelled ” volatile “( in my case anyway, I wonder why). I also believe they have their own rule book which they themselves re write when needed to suit each “problem parent”.
    I have learnt over the years that people in LA`s hate it if you are especially knowledgeable about any subject relating to the rights of people with LD`s, thankfully I too have been lucky to find help and legal advice & information from various agencies that has brought a few people to be stuck for words, as I was one step ahead of them in what they have tried to tell me was “right”.

    Well done Mark and good luck to you both, we are right behind you.

  9. Nichola permalink

    Wonderful – Steven will have Christmas in his own home. All that nonsense and misinformation from Hillingdon before you accepted the tenancy just shows the need to question everything. Exhausting, though. Hope you and Steven can kick back and have some peace and fun in the new place.

  10. Sally permalink

    Congratulations to you both. I read the time line several times and can’t quite believe it, although I do have experience of Local Authority u turns. It read as a campaign of harrassment, chancing it and making things up as they go along.Every time you questioned a decision-and hats off to you for doing so rather than exploding-it seemed to melt away. I still can’t figure why Steven has lost £7000.
    I am inspired by your ability to stay calm, at least when talking to the Authority and to seek advice on what the legal realities actually are. So often I have lost my temper or been too upset to win on grounds of fact.
    What a wonderful Christmas you will both have.All down to you.

  11. Sally permalink

    Just reading the other comments makes me think-there’s a stereotype amongst care services of parents of the LD as difficult/mad/humorless/demanding/focused on various little battles/obsessed bores.
    And there’s some truth in that-the experience of trying to deal with the systems, clinical/educational/housing etc etc is so shocking and demeaning that no matter what you were like to start with, you do end up terribly stressed and preoccupied with whatever problem’s to hand.
    This in turn makes us disliked (“Its that mad Mrs G on the phone again”).
    The people in the services don’t have the imagination and compassion to think for a minute what it is and has been like for parents. We are not quite real, we are just the sort of people who have LD kids
    One wonderful thing your blog does Mark is explain just what it is like for parents and brings it to the public. You were praised by the Judge for never giving in to badmouthing Hilingdon to the Press . I couldn’t have acted with such dignity. You even were calm and receptive when the Council Head scampered over after the Court case to apologise for what they’d done in front of the cameras.Because you are so calm and rational you win through and show people what its like for all of us. So thank you!

    • Liz. permalink

      I am not difficult enough, not mad, not humourless (or I would be mad )not as demanding as I feel I should be, they are not little battles. I don’t think I am an obsessed bore, either. So I won’t buy that there is even a little truth in that view. I do think we are regarded as “the sort of people who have LD kids”, as if we brought it on ourselves somehow and are therefore disqualified from being taken seriously by people who have very little idea what our lives are like.

      I think we know more about love and committment and resilience than those who relentlessly patronise us. It is the system that is mad, not us.

      • Sally permalink

        I agree the system’s mad-and brutal. i guess I meant that they don’t think what its like for us all so they don’t understand why we’re so upset about an issue, such as a letter not sent, a sort of help withdrawn. Its easy to stereotype us as demanding people who don’t understand that whatever is on offer is fair and adequate.
        .I do think before I had to deal with the various services myself, I didn’t understand why fellow parents of disabled kids seemed so preoccupied with them-surely it was all straightforward? No need to be upset? The posters and politicians say there’s lots of help and its easy to get, after all.
        i know now!

  12. Kay permalink

    Template ‘Safeguarding Vulnerable Adults’ policy. As far as I can see, Hillingdon has subjected Steven – and you – to most of the abuses listed in 6.3.3 – 6.3.8 and continues to inflict those same abuses to this day. Wish there was a way to hold them definitively to account for it.

    6 TYPES OF ABUSE
    .
    6.1 Abuse may consist of a single act or repeated acts. It may be physical, verbal or psychological, it may be an act of neglect or an omission to act, or it may occur when a vulnerable person is persuaded to enter into a financial or sexual transaction to which he or she has not consented, or cannot consent.

    6.2 Abuse can occur in any relationship and it may result in significant harm to, or exploitation of, the person subjected to it.

    6.3 The Department of Health in its ‘No Secrets’ 2000 report suggests the following as the main types of abuse:

    6.3.1 Physical abuse – including hitting, slapping, pushing, kicking, misuse of medication, restraint, or inappropriate sanctions.

    6.3.2 Sexual abuse – including rape and sexual assault or sexual acts to which the vulnerable adult has not consented, or could not consent or was pressured into consenting.

    6.3.3 Psychological abuse – including emotional abuse, threats of harm or abandonment, deprivation of contact, humiliation, blaming, controlling, intimidation, coercion, harassment, verbal abuse, isolation or withdrawal from services or supportive networks.

    6.3.4 Financial or material abuse – including theft, fraud, exploitation, pressure in connection with wills, property or inheritance or financial transactions, or the misuse or misappropriation of property, possessions or benefits.

    6.3.5 Neglect and acts of omission – including ignoring medical or physical care needs, failure to provide access to appropriate health, social care or educational services, the withholding of the necessities of life, such as medication, adequate nutrition and heating.

    6.3.6 Discriminatory abuse – including race, sex, culture, religion, politics, that is based on a person’s disability, age or sexuality and other forms of harassment, slurs or similar treatment, hate crime.

    6.3.7 Institutional abuse – Institutional abuse although not a separate category of abuse in itself, requires specific mention simply to highlight that adults placed in any kind of care home or day care establishment are potentially vulnerable to abuse and exploitation. This can be especially so when care standards and practices fall below an acceptable level as detailed in the contract specification.

    6.3.8 Multiple forms of abuse – Multiple forms of abuse may occur in an ongoing relationship or an abusive service setting to one person, or to more than one person at a time, making it important to look beyond single incidents or breaches in standards, to underlying dynamics and patterns of harm. Any or all of these types of abuse may be perpetrated as the result of deliberate intent and targeting of vulnerable people, negligence or ignorance.

  13. Weary Mother permalink

    When I went to see the MP, as I left his office, I repeated my concerns about the aggressive defensive culture of this LA, he stated’ it’s not as bad as Hillingdon!!

    • Weary Mother permalink

      I have been reading and re reading this particular blog and the comments.

      In the very recent past I read of a court case where a mother of a middle aged man with Downs and Autism,had killed him. If I remember correctly, he had been excluded from all day care for some time, because of his behaviour. His mother that dreadful day, driven beyond sanity. The reports from her neighbours, friends and her vicar described a loving and dedicated mother. I followed the case because this man was the same age as my son at the time, who also has Downs, and I too was deep into a long fight for safe care for my son. The reports on this case were heartrending.

      I get very tired at times, but my son has never driven me further than into hysterics with his dry wit and perceptiveness. I know that we are very fortunate. BUT….his LA has taken us all to the brink of black despair, many many times ….

      The most saddening thing in the reports was when the senior representative of the woman’s LA stood on the court step, and said’ we offered her help and she would not take it’. I remember thinking at the time, how can anyone think that a mother who (as reported) loved her son so deeply, would kill him rather than accept help. It seemed to me to be the worst, most dreadful, disrespect and lack of empathy, for all we parents and our magnificent children.

      • Sally permalink

        I think we all know what sort of inadequate help would have been on offer-no day care, piles of forms to fill in to get a carer, still long stretches with no help at all. I remember seeing that comment given on TV and feeling sick. Whenever a parent of a person with LD is driven to those sort of extremes, there is always a council representative insisting that the help was wonderful, the parent just didn’t accept it. The point is that woman had no day care and not enough respite.
        The enraging thing is that in the face of the evidence that the help wasn’t enough the council insisted it was.

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