This week in review: HNNGGGGGGGGGGH.

Good grief.

So regular readers will know that we started the process of applying for PIP for Husband in May.

We had the assessment, had Husband turned down (as in, he received 0 points), and were told we could ask for a mandatory reconsideration. This has to be done before it can be taken to tribunal.

Very well. So we wrote a letter explaining why they needed to look at it again and what we disagreed with. I sent this as a recorded delivery on the 7th of November to be sure it got there before deadline of the 10th of November. I logged in to the Royal Mail website and saw that it had been signed for at their end on the 9th of November.

This Wednesday we had a letter back from the DWP to say they had taken a look at their decision again and were still not awarding Husband any points.

Said letter was dated the 7TH OF NOVEMBER, the same day we sent our letter to them.

So, they have clearly not even considered what we put in it.

Not to mention: The letter states that if you want to take it to a tribunal, you have 30 days from the date of the letter to notify the court about your intent to do so.

Now, the letter was dated the 7th of November and we received it on Wednesday. That’s eight days that we’ve lost on the time we’ve got to notify them.

This week has just been a big, grey mass. I’m just worn out and fed up all the time, haven’t had the energy to do a lot this week. Cooking has just gone out the window.

I am convinced that they ensure the process of applying for PIP is the way it is, to deter people from applying, or if they are turned down, to wear people down so much they won’t challenge it.

I will have to get the form started next week at some point – just need to go through it step by step and explain why we disagree with their decision.

Just need to get the will to live back first.

If you want to read about our previous experiences, you can do so here, here and here.

 

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Our experience of having an adult assessed for ASD/Asperger’s Syndrome – Part 1.

I thought I would share with you our experience of what it was for us to have an adult assessed for ASD/Asperger’s Syndrome. I have made it into two parts because it was quite challenging for us, and I feel it needs more than one part just to explain what an ordeal it was for us.

Husband (who I met through an online roleplaying game) has always been a bit different. He has always felt like an outsider and like he hasn’t fitted in, and has wanted to make friends but not had a lot of success, and has always been wary of new things, people and places. He coped as a child, a teenager and later as an adult by developing coping strategies and because he had the support of his amazing parents and siblings, and later, yours truly. We just thought that ‘Oh, it’s just the way he is’.

Then, our nephew was assessed for and diagnosed with ASD in 2014. Just by chance I picked up and read one of the books his mother, Husband’s sister, had bought on the subject while we were visiting them.

And it just all fell into place.

I read, reread, and read again the book and the diagnosis criteria for ASD and Asperger’s and I just though to myself ‘oh my goodness me, Husband fits every almost single characteristic on here!’

It was as though someone’d just turned on the light.

I sat down with Husband and talked about what I had read and how I felt it applied to him, and what it could mean for him and for us to get a diagnosis.

When Husband was a teenager, he was seen by CAHMS (Children and Adolescent Mental Health Service), due to the anxiety he developed after he was diagnosed with epilepsy as a teenager. The psychiatrist who saw him at the time verbally diagnosed Husband with Asperger’s Syndrome, however felt that because of Husband’s anxiety at the time it would not be beneficial to him to pursue a diagnosis at that time so it was left.

Husband graduated from college in 2010 and while he held down odd jobs or temporary contract, he could not seem to secure anything full-time or permanent. He currently works part time close to where we live and he this has done wonders for his confidence, plus he was also able to secure a casual job at another place (until they started being jerks.). But Husband had always struggled at work with interactions and reading the intentions of others and this impacted him and still impacts him at work.

To start the ball rolling, Husband needed a referral from his GP – we got this and a social worker came to the house and visited us in October 2014. She then made a referral to the local hospital for an assessment.

Husband was assessed by the Asperger team at our local hospital in January and March 2015. At the end of these assessments, which were done by a speech therapist, the team concluded that Husband did not meet the clinical criteria for Autism Spectrum Disorder or Asperger’s Syndrome, and therefore they could not help him.

The team stated that the difficulties Husband was experiencing is seen in many children who have been in the care system. We felt that this is not the case with Husband at all, as he has lived with his adoptive parents from when he was six months old through to adulthood. He has lived in a loving, supportive family, and he has not lived anywhere else.

Because of this we challenged their decision and asked for a second opinion. In addition to this, we felt that the tests they used to assess Husband with there completely inappropriate for assessing adults with.

To illustrate: when we went to the second appointment in March, Husband had to do three tests. We immediately became concerned as the worker stated at the beginning of the appointment that they were using children’s tests as the department could not afford the tests for adults (!).

One of the tests they performed was that they read Husband a list of phrases and idioms, each with four possible answers, and Husband had to select which one was correct. So for example, what does ‘cut that out’ mean? And then there were four options as to what it meant ‘stop it’ ‘cut something out with scissors’ ‘go away’ or ‘edit something’. There were about twenty of these and the only one Husband didn’t get right was ‘like water on a duck’s back’ because he’d never heard that expression before, all the others he got right the first time.

I can understand why this test would be appropriate for a child but I am not confident this test would be appropriate for an adult. Having Asperger’s Syndrome does not mean that you do not retain information. Of course Husband knows what these mean as he is an ADULT and he will have heard these phrases at some point during his life, and will have learnt what they mean!

We also felt that they have completely disregarded the evidence Husband, his mother, and I gave to the social inclusion worker when she came to talk to Husband after he was referred by his GP in October. She asked Husband how he felt about eye contact for example, to which he replied that he knew he had to do it, but had to think about it a lot.

His mother and I raised at second assessment that Husband struggles with several different aspects of daily living, including changes in routine, going unfamiliar places, and situations where he’d be in a group. All of this seemed to be disregarded by the team.

So when the team announced that Husband did not meet the criteria in their opinion for Asperger’s Syndrome, and that they could not help him, I burst into tears. I cried all the way home and felt very despondent. It was as though they did not believe us at all and just dismissed all the evidence we had given.

When I had calmed down enough, Husband’s mother said we had the right to a second opinion. This was arranged and set for August 2015.

 

An Organized October.

So October is over, how did we fare?

Good things about October were:

  • Having Husband’s friends stay over for a night and playing games with them and eating junk. Friends, and especially friends who understand, are balm for the soul. Husband is visiting them this weekend as I am at work. No surprises there.
  • My sister coming to visit me, and us spending two and a half days in London together for my birthday. My sister and her family and my family and Husband’s family have all been go generous. They all gave me spending money and while I initially put things back in the shops, my sister told me to stop doing that, and explained that the people who had gifted me the money would be sad if I didn’t treat myself. So I bought – are you sitting comfortably? Two pairs of shoes, two packs of new tights, three pyjama bottoms and two pyjama tops and! three new bras (let’s face it, when two of your bras are pulled from the washing machine having been ripped apart at the FRONT while being washed, they need to go). We spent two full days shopping, eating good food and talking. My sister also gifted me three pairs of jeans and she also brought….
  • All the food. Seriously, she brought us all the food from home from her and her family! She brought: Two lamb roasts, a whole ham, three big packs of wiener dogs and three packs of bratwursts, a side of smoked salmon, a pack of lean pork and a pack of lamb steak, and a pack of diced beef from the farm. It’s so nice to see the freezer full again and it will help us so much with the food budget.
  • Speaking of which, we were under budget for the food this month – Lidl down the street from us opened after having been closed for a month for refurbishment. They gave everyone a card which got them a free item if they spent £20 a week shopping there so we’ve been going each week.

Things that could have been improved about October were:

  • Husband’s PIP claim being refused completely. We are asking for a mandatory reconsideration.
  • Situation at Husband’s work place still carrying on. He has not had any hours there since the beginning of July and the union solicitors are not sure if they will be able to challenge their behaviour in court. The union are helping us appeal the outcome of the grievance hearing as we were not pleased with the response they gave us. It still seems they have very little insight into how to support someone with Asperger’s Syndrome, and they seem unwilling to take this onboard or get some awareness training. They are saying they will not use casual workers now due to operational costs which is why they say he has not been given any hours. Husband is looking for other work now.
  • Having to deal with some quite challenging behaviour at work from students. Some, who can help it, and some, who can’t.
  • Back at work now full time as uni is back in session as well, and the whole department has had some rather unsettling news about a proposed contract change. I have let the union know a change to my contract is detrimental to me and to us as a family. I will write more about this in a separate post but it has definitely made me and many of my colleagues unsettled and concerned.

All of this stuff, feeling like we are perpetually in limbo, is taking its toll on Husband’s mood and self confidence. It is being slowly eroded, particularly due to the lack of hours and care from his workplace.

Only this week he said he felt blue as he wishes someone had use for him and felt he was of significance. That he can’t ever help out or be useful to anyone.

However there has been one change – when Husband has felt like this in the past (and it has happened not infrequently), he has flat out refused to seek help for it. Now however he has said he will have a few sessions of therapy. Not going to be cheap but if it helps Husband feel better in himself and restore some faith in himself, then it’s worth all the money in the world.

I will end the post on a cute note with a picture of the Cat snuggling up under my scarf.

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‘Oh so this is yours? Cry me a river, human.’

Applying for PIP: Our experience, part 3.

(You can read part 1 and part 2 of the saga that is our experience of applying for PIP for Husband here)

Husband had his PIP assessment on the 4th of September.

We then had a a letter on the 23rd of September, from the DWP to say they now had all the information they needed to process our claim and that they would let us know what the outcome was in due course.

Then, a letter came on the 28th of September, and as I opened it and read it, I could feel a huge hole opening up under me.

DWP and Capita had decided that Husband was not entitled to PIP.

To receive PIP, you are scored out of 8 on most categories and out of 12 on two of them which concerns mobility.

Husband was scored 0 on each category for both Living and Mobility, meaning his score was a grand total of 0.

I genuinely could not believe their reasoning behind their decision to not award even a single point, in any category. The more I thought about it, the more I got angry about it/was convinced I was living in some weird alternative universe where Capita and DWP could either ignore or twist anything we had said.

I have been going through each section they scored Husband 0 on and explained and evidenced everything. We can ask them to do a Mandatory Reconsideration of their decision within one calendar month of receiving their decision letter. If we are still not happy with their decision after this, we can challenge their decision at tribunal.

Take Managing Money for example.

Husband was scored 0 for this which means they feel he can manage complex budgeting.

I have put the following in our Mandatory Reconsideration letter. Names removed for privacy purposes:

Making budgeting decisions (scored out of 6)

Your decision was to give me a score of 0 out of 6 points in this category as you have stated that ‘you can manage complex budgeting decisions unaided.’

I put the following in the PIP application regarding money and budgeting:

‘REDACTED manages at the moment as REDACTED is responsible for all the finances in the household, ensuring everything is paid in full and on time. Due to his dyslexia REDACTED struggles with reading and understanding bank statements and bills, and finds this frustrating, so he does not do it.

Bills are in REDACTED’s name and bills and expenses that have to be paid are done by REDACTED such as council tax, mobile phone bills and energy bills. REDACTED has his own bank account that his wages go into but he gives his wages to REDACTED to pay bills and for outgoings for the house. REDACTED explains to REDACTED if there are budget decisions to be made and the pros and cons of each choice so REDACTED can think about what he feels is best and this helps him decide. An example of how this has been done in the past was when REDACTED and REDACTED bought their own home. REDACTED did not see the value in owning a home however REDACTED explained to REDACTED that it would be the best decision to make for the future as they would not be able to rent all their lives.

If REDACTED did not have the support he gets with managing the household budgets, paying bills or planning future purchases, he knows ‘something bad would happen, something he does not want to think about.’ ‘

I also expanded on this in the section about reading:

‘REDACTED supports REDACTED by calculating his monthly timesheets and helping them fill them in as REDACTED’s workplace converts minutes to percentages, something REDACTED struggles with. When REDACTED had to complete his monthly timesheet once he stayed behind 25 minutes at his workplace. REDACTED felt this was very embarrassing as he was not able to work it out and his manager kept asking him if he had finished yet. REDACTED still had to submit this in the end and now takes them home for REDACTED to fill out as he feels it is too humiliating to try and work this out in front of his colleagues.’

I was asked about budgeting and managing money at the assessment, and I explained that I am able to go to the ATM and put my card in to withdraw money, and that I understand the number on the screen where it says the balance. I also explained that I can go to the shop and buy food for example and I would know how much change to get back.

I did explain however that I do not understand bills or my bank statements and that my wife reads these and deals with these for this reason. The assessor pressed me on this and asked me twice if I could understand it if I had been shown how to do it and I firmly said no both times. ‘

The refusal letter states that we have to send the Mandatory Reconsideration letter in within 28 days of the date on the refusal letter. So will do that next week.

Good grief.

Or just, you know, grief.

 

Current situation: We’re still waiting.

So.

We had the grievance meeting concerning the experience Husband has had at his workplace in the beginning of the month. It was attended by our union rep, Husband and myself. From the employer’s side came the treasurer, who had been tasked with investigating our grievance.

I can’t deny, I felt a bit bad for her. After Husband’s boss left in July, the treasurer had been thrown in and has had to sort everything out from staff rotas etc. while training the new manager. So she hasn’t been able to get any information from her regarding our claims. But she did use the fact that Husband’s boss isn’t there anymore as a shield for a lot of the stuff we were concerned about – when it is in fact the whole organization who is at fault. Everyone is responsible for ensuring they are compliant with Equality and Diversity in the workplace. It’s as though there’s a culture there of that this kind of behaviour is acceptable. Nobody seems to challenge it, anyway, and that means accepting it, in my book.

Husband still has not had any hours since the end of July. The union rep queried this and what the treasurer said is that while Husband did put his holidays in the calendar, as he had not put his availability in the calendar, he was not scheduled to work any shifts.

Apparently when Husband’s boss was leaving, the treasurer took over putting together the rotas for the summer. The treasurer told the boss and deputy that she would be doing this based on what was put in the calendar, and to cascade this information to the staff so they would put their availability in the calendar.

They don’t seem to have told Husband this. In addition he went in with his timesheet in the beginning of August and verbally told the deputy he was available to work. They said they might have some work for him the following week, but of course we heard nothing. Can’t help but think the deputy is responsible for a lot of the upset Husband has gone through.

What really grinds my gears as well is that Husband has for three whole years while volunteering and later working there, always been given his shifts by text. Every. Single. Week. Why would he just understand that the procedure was different, unless he was told what to do?

We learnt that the workplace are in severe trouble financially due to parents either being in poor financial straits themselves or for simply not paying their bills. According to the treasurer, they’ve now had to sell some of the debt on to debt collection as the workplace is stretched very thin financially.

The treasurer did not say it directly but implied it was the main reason why Husband’s boss was asked to leave as she’d given people too many chances and agreed to let them pay in installments.

Because of this they will not be using any relief workers at the workplace apart from the holidays now, as they are contractually obligated to pay the manager and deputy, and the two apprentices they have.

The workplace has taken the log we have kept with what has happened to Husband, and also our list of Reasonable Adjustments, and will respond to these. Eventually.

Husband still wants to pursue the grievance as he feels it’s important to see through to the finish, but he has resigned himself to the fact that he now needs to consider his options.

Back to jobhunting, now. He naturally finds this quite daunting as he has not done this for three years.

This time it will be different though. Husband now has a diagnosis of Asperger’s Syndrome and we are exploring what support there is available for him through Jobcentreplus and Remploy.

All the same, I am worried about him and his mental health as I will be going back to work six days a week starting Monday. I wish i could spend more time at home to support him, but as the main breadwinner it’s just not possible. We need the money now. More than ever.

The unknown of trying new things. And the delight of finding you can manage.

Husband did something that’s not quite like him this week, and managed it as well.

He made dinner for me! And, he made something that he hadn’t made before, and he managed to do it.

For the uninitiated: Some people who have Asperger’s Syndrome struggle with things that are new and different, and encountering these things make them anxious. Some may also need very clear instructions and support with doing tasks.

For Husband, saying ‘just cook it until it’s golden all over’ for example is not helpful as he won’t understand what that would mean. How long is that for? And what shade of golden? Instead, you say ‘preheat the oven for 5 minutes. After the oven has preheated for 5 minutes, put the food in at 180 degrees for 45 minutes. Set a timer on your phone for it.’

Husband does cook but it has to be things he knows and has made before. Even then he will ask me to come and check the food and check it’s going ok.

I asked Husband if he could cook dinner on Wednesday as it is normally the hardest day at work for me, as it is so busy. He said he would and then said he would cook something new, try something different. I said that was ok and to think about what to buy and to check the cupboards as well, and I said if it didn’t work that we could have a takeout, that that would also be fine.

He said he would try making what he had in mind, and asked me to buy some crusty bread on my way home.

Well! I came home from work and we had this!

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Husband made dinner! Potato, carrot and onion soup with mixed herbs, garlic and bacon.

He was so pleased with himself that me managed to do the recipe first time around with no support. It was delicious and he has said he will make it again for us. He explained to me in great detail how he’d researched recipes, gone up to the Co-Op to buy the ingredients and then peeled and chopped everything.

It might seem odd for some to celebrate it. But I am so proud of him for giving it a go and I can tell he was pleased with it, and that it’s given his confidence a boost. It is a big deal for him and I will continue to encourage him to try new things in future.

 

Applying for PIP: Our experience, part 2.

(Have you read Part 1 yet? If not, you can do so here.)

Husband was assessed by someone from Capita in our home for his assessment for PIP; after a slight hiccup as she could not find our house we got started.

To start the PIP assessment you have to show two kinds of identification; we chose Husband’s passport and birth certificate for this purpose.

The lady had a laptop where she wrote all her answers down and she stayed for about an hour.

I have mixed feelings about how Husband’s assessment went.

An hour is in my opinion not enough to accurately gauge someone’s needs and how well they function in everyday life in my opinion. Husband presents very well but does need a lot of support with everyday living – and how can you assess that from sitting across from him in a chair and asking questions? Surely you need to see what he does to cope with day to day living to make that assessment?

I’d read through our PIP form to remind myself what we said, and I stupidly assumed we would be asked about what we had put on the form. But when the lady started, she seemed to jump back and forth between different points, which threw me a bit.

She asked Husband about his mental health, how he coped at school (asking about support he was offered there) and how he copes with going out and meeting new people. Thank goodness I was there to be able to fill in extra information.

One particular point which irked me was when she was asking Husband about finances and how he copes with reading forms and correspondence. We stated on the form and Husband reiterated during the assessment that he isn’t able to read and understand his bank statements and do forms as he doesn’t understand them. I help him with this; when he does job applications I will read him the questions and he answers them, and I fill in forms for him. I read his bank statements when they come to see if there are any discrepancies as he doesn’t understand them.

Well this lady laboured this part in particular, asking Husband three times, ‘but do you think you could do it with support, if someone showed you what to do?’ and Husband answered no each time.

Couldn’t help but get a bit cross with her. We explained on the form that he struggles with this and why and that I am the one doing it. Husband said on the form that if he had to do it he wouldn’t understand what to do, or what the forms or numbers mean.

Was she trying to catch Husband out by making out that his support needs seem less than they are?

And what does that insinuate about me, exactly? That I’m somehow controlling everything and not giving Husband a chance to try?

Husband trusts me to do the right thing. I know his banking details and information but always ask before accessing this and I would never do something without his consent or without his knowledge. I have more than once in our relationship let him know that if he wants to sit with me as I go through things and have me explain things, I am more than happy to do that. If there is something I feel we need to do, I take the time to explain it to him so we can discuss what we do next. And everything I have ever done is in Husband’s best interest regarding money, bills, planning, applying for stuff, planning for the future.

And believe me I have looked as I know that you can get a Lasting Power of Attorney in place. I just don’t feel that would be appropriate for us at this time as he is capable of making his own decisions and I feel an LPA would make our relationship very uneven. We are husband and wife and as such equal in our relationship, and putting an LPA in place for Husband would shift the balance of the relationship away from Husband in my opinion.

Nevermind. It’s done now and we have to wait to hear what the DWP say. But I am bracing myself as I am fully prepared for having to appeal their decision if they turn our application down.

One thing to note is that this process does take time and that you need to be patient. I rang the PIP hotline on the 19th of May to start the process off, and we are still waiting for a decision. So this process is not for people who are impatient/have no income ><.