A Sundry September.

September has been an interesting month.

Good points about September were:

  • We finally had the PIP assessment and grievance meeting for Husband.
  • Husband has become more confident in cooking and is thinking about more and more recipes he wants to try.
  • We got some lovely bargains reduced at the shop.
  • We were under budget on the old grocery shop. No large part due to the meat and food my sister and her family send with us when we were home in August.
  • We sold some things on eBay, everything helps for the Japan/Good-to-Have Fund!

Things that could be improved about September were:

  • Husband still has not been given any hours at the job where the grievance is. And we’ve had two letters from them which are the most unprofessional ‘professional’ letters we have ever seen, so with support of the union we will appeal their decision. This impacts on Husband’s mental health a great deal.
  • PIP still drags on. We rang them on the 10th of May to get this started so it seems to take a long time. DWP sent us their decision letter on the 28th of September. Their decision is to not award Husband PIP, and in each category, they have scored Husband 0 out of 8 or 12 points, meaning they don’t feel he needs support in these areas. I am changing between feeling tearful and incandescent about this. We are having the mandatory reconsideration and then going to tribunal about this. It does make me wonder what happens to people who don’t have anyone to advocate for them.

 

 

 

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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.

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 ><.

An Assorted August.

Well! Back to work with a bang now. Term starts at the college on the 4th of September and I’ve been back at work since the 30th.

It’s been a mixed-bag summer and an Assorted August.

Good points about August were:

  • Visited Husband’s friend and fiance for a weekend, something he really needed. Feeling wanted and like he matters is so important for him.
  • Still being on vacation. I had a chance to relax and bar a few things I was able to do most of what I wanted on my list.
  • Visiting family back home in Norway for a week. We were able to visit my sister, brother, my mother and my best friend and her family in the space of a week. We were able to attend my brother’s Summer Festival at his house where he served home made chili and garlic sausages and homebrewed beer and cider. I was able to go to a flea market with my sister, just her and me. Husband had a lovely time and felt very calm when returning home; he spent a lot of time with my nephews which he enjoyed.
  • My sister and her family are so generous. Going back to the UK she sent 11 kilos of food with us and several pieces of clothing that she no longer wanted. Great for our food budget and great for me, as I’ve lost weight and now only two pairs of trousers fit me. Husband was finally given his 30th birthday present from them (it was a surprise) – a new computer they’d upgraded with more fans, space and a very good graphics card. He has spent the time since we got back tinkering with it and installing games on it.
  • We were under budget for our grocery spend again ❤

 

Things that could have been improved about August were:

  • Husband’s mental health and how upset he is about how work are treating him. Since my July post about his work, he has not been given any hours, so as of today he has not been given any hours for over a month. Going in at the beginning of the month with his time sheet and finding new staff there did not help either. So August has been spent spending time with him and family, trying to distract him from how rubbish he is feeling. It is really eroding his self-confidence and his faith in himself now. Words fail me in describing how upset I am about this and how I can tell it’s affecting him.
  • While at my brother’s party in Norway, something bit me on the leg; probably mosquitoes. The inside of my right ankle turned purplish-red and the whole ankle swelled up. The day after we got back it was so swollen and painful I couldn’t stand on it at all and so Husband went to the pharmacy for some advice. He came back with some hydro-cortisone cream and antihistamines to get it to calm down but it was still just as angry the day after, so went back to the pharmacy after work and asked if they could give me anything else for it. They took a look and advised going to the doctors as they were concerned it could have gotten infected. I went and was prescribed Flucloxacillin.  Am on it now and feel better already but buying the medicines has set us back £13.80. I understand, needs must, but not really what we need right now with Husband not working very much at all. Unexpected expenses are frustrating.

We are due to have Husband assessed for PIP on Monday and the day after we are meeting with Husband’s workplace together with the union to discuss his grievance. I would be lying if I said I was not anxious about these things but have to hold it together. For Husband’s sake.

Applying for PIP: Our experience – part 1.

Husband was diagnosed with Asperger’s Syndrome in August 2015. After receiving the confirmation, we knew this could help us as having the diagnosis confirmation would mean he could get more support such as through Remploy or through seeing a Disability Work Adviser at the *shudder* Jobcentre *shudder*. However it was not until this year that we were made aware by a family member that Husband might be eligible for PIP as I do support him with a lot of daily living activities and help him with his mobility.

(As an aside, from my experience, government agencies will not tell you you may be eligible for anything. You have to investigate this or find out for yourself, nothing seems to be just handed over in terms of information and advice. I also feel that they make the process of applying for these things so convoluted to deliberately deter people from applying. If Husband had not had people to help him with this he would not have applied for this – maybe that is the strategy of the current government?)

PIP or Personal Independence Payments are there to help people manage the costs of having a long term illness or disability. It’s comprised of two components, a daily living component and a mobility component.

Calling the PIP hotline:

You start the process by ringing the PIP hotline and asking for a form. I rang the PIP hotline on the 10th of May on Husband’s behalf as he gets flustered when asked a lot of questions as he needs time to answer. I was on hold for about 15 minutes; they are only open until 6pm and I get home from work at 5pm so I can imagine many people were in the same boat as us and trying to call before they closed.

Before you ring the website asks you to have some details ready; date of birth, contact details, your National Insurance number, your bank or building society account number and sort code and the name, address and phone number of your doctor or anyone else who they can contact about your condition. This did not apply to us as such but they also ask you about if you’ve stayed in a care home, hospital or been abroad for more than a certain length of time in the last five years.

The lady who answered had to confirm with Husband I was allowed to make the call on his behalf and read the declaration to him, but apart from that I did most of the call. I am glad I did as the lady who took our call was quite short with us I felt and did not seem that interested in what we had to say. I get that she probably has to follow a script but I would have felt quite intimidated if I’d have to deal with her again. The call took about 15 minutes to do.

At the end they said they would send the form to us in the post and they gave us a phone number to ring if the form had not arrived within two weeks.

The PIP form:

Our form arrived on the 23rd of May. Look at this beast of a form! Look at it!

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Allllllllllrighty then.

As it’s quite complicated and detailed, I dedicated time to do at least a page of it a night. Some of the pages do not apply to Husband so can be skipped (like helping with toileting or mobility issues).

If I had known about this I would have kept a log of the things I have supported Husband with, really kicking myself for not doing this now. Ah well, hindsight and all that.

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Lots of tick-boxes but you do have a chance to add additional information.

We were advised by different people to really labour what would happen if the support to do these everyday activities were not there and how this would impact him and his ability to live independently.

While I was working on it, I suddenly had a brainwave. When Husband was being assessed for Asperger’s Syndrome, I realized that the support tutor he used to have at college was still working there (I now work at the college he used to attend), and so I asked if she would write a letter on his behalf regarding how he presented as a teenager and what support she had. She wrote us a great and supportive letter, which I kept and now added a copy of to our PIP application. I also added copies of the diagnosis paperwork the psychiatrist sent us.

The support of Husband’s family was invaluable for getting the form done, especially husband’s sister whose little boy was diagnosed with ASD about three years ago. They applied for PIP for him so she read through what we’d put and made a lot of useful suggestions based on her experience. Husband’s mother also had a read and came up with a lot of helpful ideas.

Sent the form off on Tuesday the 6th of June, so pleased with myself!

The time between sending the form off and being assessed:

But apparently it would not be all plain sailing, even though we’d ensured we evidenced everything:

PIP
Oh joy.

Great. But. I sent it back using the prepaid envelope and got Proof of Postage at the Post Office Counter to prove I sent it, plus I photocopied the form once we had filled in, because, you never know! I am a great believer in hard copies.

Husband had a text on Monday the 12th of June to let us know they had received the form. We then had a letter from the DWP on the 23rd of June to say that Husband’s PIP claim would be assessed by Capita. I hadn’t even heard about this company before this, I had only heard about ATOS and the things I had heard about ATOS were not good so I was bracing for a fight.

We then had a letter dated the 19th of June from Capita to say that they had been handed Husband’s claim from the DWP……and that was what we heard for a long time. I read and reread the letter to check just in case if we were supposed to have done something, but no. I sent an email to Capita just to query where they were at in terms of assessing Husband’s claim on the 17th of August. I don’t mind waiting as claims are backdated but found it odd that we hadn’t heard anything at all in such a long time.

On the morning we were flying to Norway on the 21st of August we had a letter to say they had to do a face-to-face assessment of Husband and that this would take place in our home on Monday the 4th of September. The letter asked us to ensure we had two kinds of documents ready when the person arrived to assess Husband to prove his identity.

We then had a letter a week before reminding us that Husband had the appointment and where it would take place. Husband also had a text from the DWP to remind him of his appointment. I will ring Husband’s sister today and ask her about some hints and tips regarding the assessment as their son was awarded PIP once he had a formal diagnosis of Asperger’s, and what we can expect from the assessment. Fingers crossed for Monday.

 

 

 

 

I am grateful for: People who understand.

I had a wonderful experience yesterday, despite us being in limbo waiting for the situation at Husband’s workplace to be resolved.

We need to start genuinely considering what we are doing next, as Husband is not sure even if this gets resolved that he wants to go back to this job. And having just the one part-time job (less than 10 hours a week) is not enough for us to live on and pay off the mortgage and our debts.

Husband’s mother suggested to us that now that Husband’s got a diagnosis of Asperger’s Syndrome, he would be eligible for more help and support in finding and maintaining employment, or accessing training and further education, mainly from JobCentrePlus and their Disability Employment Advisors. They were very supportive of Husband’s sister which is why she recommended it.

Husband was not very keen at all; we have been through the system many, many times since he left college and had numerous encounters with the JobCentre and Jobseeker’s Allowance, all of which have been bad. But he realises we have to at least try, so I rang the hotline to get some information about it and how Husband could access this.

We were off to a bad start immediately as the lady answering my call a) wasn’t quite sure what I was asking and b) did not seem very interested. I had a bit of time yesterday before going to do my voice work, so decided to swing by our local JobCentre myself to spare Husband the stress, and just ask what was available and how Husband could access it. I realized I might not get to see somebody as you are supposed to have an appointment but went to the Information Desk (it was empty) and waited for someone to come over.

A security guard came over and asked if I needed help and I explained why I was there. He asked me to wait and then went to fetch a lady who is one of the DEA workers there. She asked me to come round and sit at her desk and tell her what I wanted to ask about.

What a change! When Husband was previously on JSA he couldn’t speak to anyone unless he had an appointment and here I was just being invited in.

I explained our situation briefly and that Husband was having a hard time at work, as he has a zero hour contract and hasn’t been given any hours now for three weeks. And how soul-destroying it is and how it is wrecking his self confidence at the moment.

She was very understanding and seemed to understand how hard it would have been for Husband prior to being diagnosed as he would have had to come up with coping strategies to be able to cope with work and things. She also said that if we were to access the services she would like to speak to him as Aspergers and ASD is such a spectrum and as such, people who are in different places on the spectrum require different kinds of support at work.

She gave me the names and numbers of three different support groups and Remploy, and said that there is different support available for Husband, but that he has to decide what he wants to do next. Once he does, she said to come back and we can take it from there.

Above all, she was interested in what I had to say and Husband and his story.

So: I am grateful for people who understand. It’s like balm for the soul to not have to explain everything in great detail, because people understand. What a difference it makes. Despite everything that is going on in our lives as the moment, that really made my day and I for now think that things can get better as this support will be available to Husband.