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A project log for Obsidian

Hacking MorningStar

morningstarMorning.Star 01/04/2018 at 10:030 Comments

After many threats of litigation, despite a lack of funds, it transpires that you cant just get justice when a government does wrong. Compensation is the nearest thing to justice, and you can only get it by suing an individual. It rarely gets this far, between you and that is a complaints procedure and an Ombudsman when that fails.

OK, complaints it is then. I sent them this...

My eldest daughter Keri was born with Dysgenesis of the Corpus Callosum, a rare and catastrophic disorder that has left her unable to speak, with severe learning difficulties and poor motor control, as well as some behavioural problems. Despite rolling like a log to move around at one year of age she was undiagnosed until she was nearly 2. When she was diagnosed we were told there werent enough recorded cases to make any statistical judgement and I was told when I asked what THAT meant, "Sorry son, we cant even tell you if she will live through childhood. You're on your own."

That was literal, since then the strain of raising and caring for her has cost me everything.

To begin with, my partner and the children's mother snapped under that strain pretty early. She is bipolar, and took it into her head that it was my fault. She became abusive to me and tried to kill me several times during a massive breakdown culminating in me throwing her out of the house physically after removing a knife from her grasp, witnessed by both the children. She remains absent voluntarily, although there were pitched battles in court over parental responsibility I was given custody in the end. I remain uncounselled and uncompensated.

Now raising two children alone, one with severe disabilities, I managed 6 years before confronting Social Services with denial of service. I had not had respite, and indeed not been made aware of the service. When I was made aware, Social Services denied it existed until I threatened litigation, and then miraculously she was found a place at a care home in Worthing one weekend in 4. With some omissions that is how it remains to this day. I had a series of social workers who were all completely ineffectual and extremely irritating with it. Eventually one was found who managed our support with 6-monthly phonecalls and left us alone, and that is how things were until she became an adult.

During this period I used the time when the kids were at school to educate myself properly, designed a series of experiments into the nature of electricity, magnetism, light and sound, chemistry and other scientific interests. I have an eidetic memory and an IQ in the 180+ range, and am by now a notorious figure on the Internet where I am known as MorningStar; hacker, inventor, mathematician and programmer with a flair for writing and performing guitar and vocal tracks, and creating photo-realistic and surreal art. I have a small but loyal following of some of the most intelligent and highly skilled people on the planet on my pages, small only because I remain on benefits to this day and cannot utilise my skills to improve my status or finances. This is because I have been given official advocacy for Keri, and because she wishes to live in the community I must support that as a legal duty against my wishes. While I am her advocate, that does not mean I'm automatically her carer, but this is how I am treated. Unpaid, I do 102 hours per week caring and receive Income Support and Carer's Allowance. Keri has EESA and PIP, and together they run the house provided by the council, barely, and with frozen benefits not for much longer.

As Keri's parent I had advocacy, until she became an adult. When she was 19, her further education finished having gone to Fordwater Special School and been excluded from the Curriculum because she cannot read or write, and has only very basic signing to indicate needs. Her continence package was cut along with my single-parent benefits. The benefits agencies refused to recognise either me or her and I was forced to attempt to care for her on a single person's Income Support while she fouled herself and the house daily, lacking any continence provision. I snapped and asked Social Services for help, and was offered "A break from caring while it was sorted out". I was in such a state I signed the documents for that not realising I was giving the State advocacy and duty of care, which they then used to install Keri in Hammonds care home as a permanent resident against her wishes, she did not want to be there. She became sullen and uncooperative and asked to come home every time I visited her. In tears because I could not. I complained to the social worker, who informed me that Keri had chosen this and as I no longer had a say to give up. When I did not I found myself suddenly accused of alcoholism, narcotics abuse, neglect, mental abuse and mental instability. My benefits were cut, reinstated, cut again, I was sanctioned repeatedly and threatened with eviction from the house I was still physically caring for Keri in for 35 hours a week. We ate from the Food Bank, I borrowed from friends and family and got into debt because I refused to let the system abuse my and Keri's rights this way. Eventually the social worker took advocacy for me too, with the Benefits Agency, to sort out the mess. This was a conflict of interest, and it was used to try and push me into a job up country.

Meanwhile Keri's sister suffered. She was trying to do her A levels, but with her father being attacked on all sides and not knowing whether she would eat each day or have a roof over her head she threw them and left school to get a job and move in with her boyfriend. It destroyed our relationship and we are no longer close, I only rarely have contact with her now and it saddens me greatly. When she left, the council immediately added Bedroom Tax to the rent arrears and then used under-occupation to force me out of the house. Because I was still caring for Keri but only part-time the council didnt recognise the need for a bedroom for her. Predictably, I had a breakdown and wound up in front of mental health services, who were my salvation as well as my worst nightmare. With medical evidence I was able to throw off the accusations - clean bloodwork and psychological analysis gave me weight, and using the research and my robot that I had built as evidence I managed to prove not only competence but superiority of care, and was restored to advocate and primary carer so Keri could come out of care. The council agreed to allow me to swap with another tenant into a smaller house, and benefits were setup and eventually paid.

I did not get any compensation, I was not back-paid much of the benefits - some, and again I remain uncounselled, while the psychology report indicated a massive stress reaction and no more. I wound up in front of a magistrate over my debts, who told me jurisdiction meant I was liable, but jurisprudence led him to advise me to litigate over the series of abuses we had been through. He knew that I had no money to pay a lawyer for the class action required to do that, but he told me anyway. My work was ruined, and the AI I was building destroyed. It has taken me two and a half years to rebuild just for the love of it, despite being among the most advanced technology on the planet, it is worthless to me because I only get to keep £20 of any proceeds of my work, and the rest goes to the government. That is wholly inappropriate, as is developing a rival to Honda's Asimo on benefits anyway.

The house we were forced into from the family home that is all Keri had ever known is also inappropriate. It costs the same as the old property to rent, yet does not have a garden and has one less bedroom. It is a first-floor maisonette with 32 concrete steps for Keri to navigate even though she receives PIP for mobility and struggles with with walking on anything but firm flat ground. It is also communal rather than mid-terrace, so the amenities are shared. They are also abused; Keri regularly has to walk through garbage strewn across the path where seagulls and foxes drag it from the broken bin-cupboard. The bottom of the stairs is regularly used as a toilet by passing drunks, more than once during the last year there has been human feces piled on the stairs and it smells constantly of urine during the summer.

The last insults have occurred recently. A few weeks before Christmas this year I put her on the transport to her daycare at the centre and began my day as usual. A couple of hours later I had a phone call to enquire as to her wellbeing, as she hadnt arrived. When I told them she was supposed to be there a search party was organised and she was eventually found sitting on the transport out in the car park and had not been missed for two hours despite them allegedly scheduling her day. Apparently lately she has not been interacting much, and spends time in the hallway. They may have got used to that, and cant force her to interact, but its inexcusable that she is ignored, especially as she contributes to the service financially. And after she came home from daycare for Christmas with food poisoning that she then gave to me and ruined it, I have come to the end of my tether. The service is so poor as to be neglectful and incompetent; she requires one-to-one care that isnt provided unless I do it. She returns from respite with her hair and teeth unbrushed, her clothes and belongings scattered and hides in her room for days until she returns to her usual self.

And finally, I have asked repeatedly for another carer so that I can get off benefits and realise my potential without institutionalising Keri. But I have been denied, and for nearly three years now I have been unable to work or profit from it if I do. I have been sanctioned for volunteering by the benefits agency so I no longer do that either. It is an injustice that must be put right but the social worker virtually refuses to return my calls as he knows he is useless to me and doesnt want to make excuses for his inaction. The man is a carer himself, and an amateur musician, I respect him but not his profession or the people who make his decisions. Again, this is wholly inappropriate.


I await their decision, for which they have 14 days to respond. That takes us to the 12th Jan 2018.

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