Ingeus – No Help For a Person With Asperger Syndrome!
For confidentiality purposes I cannot use real names in this article. I will name the person I’m describing as “Paul”, but names are changed.
Asperger Syndrome is one of the least understood disabilities in the autistic spectrum. Instead of explaining the disability in detail here, there follows a link that describes the many of the characteristics of people with Asperger Syndrome along with the symptoms, please click here.
Paul has had a life of not being accepted by most people in just about every situation and this continued to employers and fellow employees. Paul is very intelligent and has had the single lone interest in computers since an early age to which he’s extremely talented, but Paul is also very vulnerable, he’s been bullied and taken advantage of many times and he finds it hard to cope with basic life skills that are expected of an average person. He finds socialising extremely difficult and he can often unintentionally offend people by his behaviour that is characteristic to Asperger Syndrome as most people don’t understand his disability. Paul constantly worries about things that most people would see as unimportant, he interrupts people’s conversations and repeatedly goes on about a single subject or what’s worrying him at the time. He gets very anxious and gets very upset when people don’t understand him, especially when they see him as rude.
Paul eventually managed to be accepted into full time paid employment in 1990 with computers work, but he nearly lost of job on numerous occasions during the first year because of numerous complaints by his colleges who saw Paul as rude and disruptive towards them, they also complained that he raised his voice (another common symptom of Asperger Syndrome) and he failed to fit in anywhere. Luckily his employer saw how talented he was as his work despite his terrible social skills and he was put into an office alone for sometime until he was slowly integrated back into the main office. Eventually his colleges started accepting Paul as eccentric and he then managed to hold his employment for over 12 years where his attendance was excellent.
Unfortunately Paul was made to leave his parental home and wasn’t able to cope looking after himself without any support when he also started going downhill with serious depression (this is common for people with Asperger Syndrome). He also found himself very tired at work and often couldn’t stay awake at his desk despite having plenty of sleep the night before. This got worse and worse until he found that he was seriously falling behind with work while he suffered extreme fatigue on a regular basis. Eventually his doctor signed him off work when he was diagnosed with depression and put on strong antidepressants starting with the now controversial drug Seroxat that made him much worse with mental side effects. Paul was much later diagnosed with sleep apnoea which stops him from getting a good nights sleep causing extreme fatigue, he was also diagnosed with an under-active thyroid gland which in itself causes extreme fatigue when left untreated, unfortunately this was after he lost his job due to long term ill health and thus bad attendance after almost of year of fighting to continue his employment against this terrible fatigue. Paul tried to fight the decision, but unfortunately it was too late and for some years now Paul has been claiming Incapacity Benefit and Disability Living Allowance (DLA). His depression went from bad to worse and he lost his flat due to debt problems before sinking into severe drug dependency while completely giving up on his life. He ended up in a homeless hostel where matters went from terrible to rock bottom when at last he started getting some support.
Paul has fought to overcome his drug dependency and is now living in his own flat again, although he’s receiving regular support visits to help with general living. He’s now been out of work for a number of years and still has problems with fatigue because of sleep apnoea, although his thyroid problem is being monitored and treated. He’s been given a machine to help him breathe at night with a mask called a CPAP machine, although it unfortunately hasn’t worked well with him and the fatigue continues while he can suddenly need sleep any time day or night for long periods. Paul wants to get back into work, but he knows he now needs a lot of support, plus he’ll need an understanding employer who accepts his disability and can work around his sleep problems. It’s difficult, but he believes there must be some work he can still eventually do, even if it involves working from home when he is able. He’s asked for help at the Job Centre and he’s attended Ingeus (formerly work directions and it’s via Pathways to Work), but he is shocked and dismayed that they won’t offer him any support back to work what-so-ever after asking to attend some of the many training programmes they offer. Paul only got offered this programme at all because his claim changed where he started receiving some income support as it’s not usually available at all to existing claimants. Unfortunately he’s been told that none of the programmes offered at Ingeus are suitable as he’s not likely to be ready for employment within 6 weeks time. Paul’s read what’s he’s supposed to be getting from these interviews, but he’s getting absolutely nothing and it’s a total utter waste of time and tax payers money. He’s argued and asked to attend a course to no avail. Courses involves everything from interview techniques to relaxation and some would have been very good towards improving his confidence and low self esteem. He’s now got to attend 6 mandatory work focused interviews at Ingeus where his employment advisor simply asks him if anything has changed since his last visit (taking about 2 minutes) and then the advisor simply gives him his next appointment date in a months time, instead of accepting Paul on a genuine course that could help him. There are 3 more of these useless appointments left at the time of writing and Paul will be encouraged to put in a complaint, I will update in the comments with the outcome.
Paul wants to work towards some sort of paid employment and ultimately full time employment, but he’s getting no support what-so-ever from the very system that’s supposed to be helping people like himself back into work. Money is being wasted forcing him to attend Ingeus that refuse to offer him any training towards his goal of employment and he obviously feels completely abandoned. He’s now frightened that with welfare reforms he could be eventually expected to do things that he’s not capable or risk losing his benefit while also put into uncomfortable situations where he won’t be accepted by people who don’t understand his disability, then he could be punished when he fails.
In my opinion the welfare system certainly needs to change as some people don’t want to work when they’re certainly able, but the system must consider genuine people with illnesses and/or disabilities who do want to work, but are unable to without at least a lot of compassionate support that works towards the ultimate goal of employment at a suitable pace. The people making the decisions and those who impose penalties against people for not taking work need to be compassionate and understanding towards genuine people with support needs. I’m personally very concerned that governments are only really looking into ways of saving money by getting more people into work as quickly as possible and only the fear of losing popularity is stopping them introducing extremely harsh measures that won’t properly consider people like Paul. Anyway at the moment it’s a pointless exercise to make people attend Ingeus appointments when they simply refuse to help even when people ask for it simply because they don’t see them ready for work within 6 weeks, this is just completely wasting tax payers money.
I sincerely hope the new Conservative / Liberal Democrat coalition government isn’t just going to be a new face of Labour or perhaps even worse. I’m very concerned by Iain Duncan Smith (the new Secretary of State for Work and Pensions) and his new proposals for welfare reform, although only time will tell if it will be a truly fair system that won’t punish genuine people with disabilities, if of-course the government keeps their promise and implements them at all.
New Government Welfare Reforms (Update 14/05/2010)
The new coalition government has already stated the following, “to end all existing welfare to work programmes and to create a single welfare to work programme to help all unemployed people get back into work.” and “that receipt of benefits for those able to work should be conditional on the willingness to work.”, please click here for full details. But please also take a look at the following article dated back before 2000 under the Labour government titled, The Single Work-Focused Gateway, aka the ‘ONE’: how it works. Sounds very similar doesn’t it, but has it really worked, well based on the number of long term unemployed and by the way Paul and other people have been treated, in my opinion NO, definitely NOT? People who have been let down in the past will only trust any new welfare to work programme when they see actual results and when they see that they’re treated fairly instead of being punished for not being able to do what’s expected of them because of their disability or illness by uncompassionate employment advisers who often don’t understand the first thing about their special needs.
It’s also very unfair to force people into what I see as slave labour. Slave labour is in my opinion forced work that’s not suitable for the particular employee where they are left no better off than when they claimed benefits or perhaps even worse off. Slave labour is also when the worker has most normal employment rights taken away from them, E.g. they have no right to leave or in fact strike if they’re treated badly, which the employer is in my opinion more likely to do when they know the employee has barely any rights. The Labour government wanted to introduce mandatory work for long term claimants on Job Seekers Allowance, although in my opinion this would have been a stepping stone to slowly forcing most long term claimants into similar forced work, but would this work be for a fair wage and would the employees have same employment rights like everyone else? Well, I suspect not as the employee would probably just continue to get benefits and only if they stayed in the position doing exactly what they’re told, otherwise they’d literally starve to death (and probably freeze) with no money coming in what-so-ever unless they stole food or managed to get charity food hand outs. Many would be put in a desperate situation where going to prison would be preferable to starving on the street. What’s more, someone who’s committed a crime often gets given the punishment of community service for a fixed amount of time, but someone who’s out of work could through no fault of their own find themselves doing the equivalent punishment of community service (or worse) for what could be a life sentence as they’d probably be no fixed end until they reach retirement age, would this really be fair?
Are People Who Are Ill or Disabled Going To Be Thrown Onto JSA? (Update 14/05/2010)
Another way of saving the government money is by taking people off higher disability benefits onto Job Seekers Allowance (JSA) where their benefits will be slashed and they’ll be subject to harsher rules about getting back into work as they’d be officially declared as fit to work. This is all very well, but I’ve seen various people who are most certainly very ill and sometimes even have disabilities forced onto JSA because of ever increasing pressure on the welfare system to save money. I saw a particular very vulnerable adult who certainly had a lot of support needs simply thrown onto JSA where he was left literally having a nervous breakdown. He was given a review, but he didn’t get any support filling the form in and afterwards I later discovered he’d answered the questions incorrectly saying that he was better than he actually was. I saw his suffering and I was very concerned at the time when I found him very distressed walking back and forth around the the communal area where he was living literally throughout most nights, pouncing on anyone who came in or out, desperately trying to tell them about his problems, often shouting and getting very upset, following them to their door or even up the road. Some people didn’t understand and got nasty to him which only made him more upset and worse. He simply couldn’t cope, but the Job Centre didn’t want to listen and he was left destitute with hardly an money while they simply told him he was fit for work repeatedly. In fact at first he was even left without any money to live on what-so-ever while his application for JSA was still being processed and during this extremely stressful time he suffered the humiliation of being forced to virtually ‘beg’ for a crisis loan just to survive. He really was too ill to fight and gave up, I was left very concerned for his personal safety and well-being because he was clearly very ill and was acting very irrationally. Unfortunately he was then involved in a public order incident due to being extremely distressed where he got arrested when other people didn’t understand why, but instead of receiving the help and support he desperately needed, he got given community service as according to job centre records he was fit for work and not unwell. He in my opinion definitely wasn’t fit for work and was soon close to being punished further through poor community service attendance, but he was having what was in my opinion a serious nervous breakdown where he was at serious risk. I’m unsure what finally happened to him, but I know that luckily he had family and eventually he moved in with them, he at least had this safety net when he was at rock bottom, but not everyone has a supportive family that will help in this way. I was totally shocked to see the way he’d been treated by the welfare system and then also later by the criminal justice system who in my opinion completely failed to understand that he was a vulnerable adult who was being made more ill by their complete and utter failure to understand his support needs. Because of the extremely unfair way he’s been treated, his illness has become much worse and now with a criminal record it’s even harder for him to find suitable work in future. If he was instead treated fairly in the first place and was given the right support that he needed, he would have eventually recovered and got back into paid employment much quicker where he’d also be much happier. This person always wanted to work, but was unable to at this time even though he had worked in the past because he really was very unwell with a serious mental illness which made him very vulnerable and I certainly saw this every single day I spoke to him.
The conservative government said before getting into office with their Lib Dem coalition that they wanted to see tighter measures on claimants of existing benefits to prevent fraud, meaning everyone will be eventually reassessed, followed by regular reassessments in the future. The problem is that the programme will be designed to throw some people onto JSA. If they deserve to be on JSA, then okay and I’m strongly against people who knowingly commit benefit fraud, but in my opinion even more genuine people with serious illnesses and/or disabilities will also be wrongfully thrown onto JSA where they’d also be treated like hell with pittance to live on. Once on JSA, they could be forced to do things or take on work (probably just for benefits) that they’re not able to because of their illness or disability and then they could even be punished when they fail. If people are punished by having their benefits removed completely, they won’t even be-able to feed themselves and would ultimately become homeless. These people will obviously become desperate and many would be forced to steal or rely on charity just to eat and keep warm, this should never happen in a civilised country. It would be utterly terrible if genuinely ill and/or disabled people slipped through the welfare net and ended up this way all because of an incorrect benefit assessment that is ultimately geared towards saving the government money.
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