by The Chronic Chronicles | Nov 23, 2014 | General Posts, Treatment
First of all sincere apologies for the lack of updates lately. It’s been such a busy time, that writing has fallen by the way-side a little.
I just thought I’d give you a small update about what I’ve been up to lately.
I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant. I’ve had that in place a couple of months now, and it’s been brilliant. She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc. It’s taken quite a bit of stress out of my life and I’d recommend it to anyone.
Medically I’m still very much in no-man’s land. The Pain Clinic have declared me incurable and untreatable, and discharged me. Apparently they only help people who will get better, they’re not interested in actually managing pain. My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less. It’s quite a scary place to be.
My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website. He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.” Although he did refer me to a Hypermobility Specialist Physiotherapist instead. Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward. Instead without any examination she declared there was nothing she could do, so I’d have my final batch of Hydrotherapy and that would be it. She then spent the rest of the session basically telling me I should be perfectly okay in the mornings, as other people with the condition manage. I tried to explain I have severe insomnia and sleep issues, and am a total mess in the mornings, but she wasn’t interested.
I then finished my final block of Hydrotherapy, which I really enjoyed. I do find the warmth means I can do much more than out of water. I would love this on a rolling-basis, and will keep trying to pester the hospital to make this happen.
I’ve also just had a sleep study done, but I’m waiting for the results. It was a machine I had to take home, that strapped to my stomach and chest, a tube went up the nose (nice!), a mask for your mouth and finally a clip for your finger. They have to rule out Sleep Apnoea before they’ll send you to a sleep consultant, but I am a little worried they’ll tell me it’s not Sleep Apnoea, and then not let me see anyone at all. Hopefully I’ll get the results soon, and this long-term issue is explored.
I have been lucky enough to find a private physiotherapist, however, that has an interest in Ehlers-Danlos Syndrome – and he genuinely does. It’s a lot of money, but the only treatment I’m now getting. He hasn’t promised he will be able to help me, but he’s going to try. If I can even maintain what little mobility I have, that would be a start. I’m diligently doing all the exercises he’s giving me (not a hurriedly printed out sheet, but thoughtfully targeting specific issues) and he’s easy to contact if things go wrong to provide advice, and alternative exercises. He really seems to know his stuff, so that’s been great.
I also recently took part in a study on Ehlers-Danlos Syndrome that’s all about what triggers the condition in the first place (obviously it’s genetic, but there is often an occurrence in your life that makes it much worse, often puberty, having children, an accident or something else. Others just have it severely from birth, so it’s exploring all of that.) The research also looks at flare-ups and the triggers.
The research sounds really interesting, and when it’s published it will obviously go into medical journals, but particularly GP and physiotherapist journals, to catch front-line staff.
One thing I truly believe is that the fight for decent rates of diagnosis lays almost entirely with GPs and Physiotherapists. They’re the ones that have to see signs, and see past one problem joint, or a history of chronic pain without a solid diagnosis and make a referral to a specialist. Once they have that awareness, only then can diagnosis rates climb.
I’m also preparing for Christmas, and this year have decided to have my first ever real Christmas Tree! I’ve also been making festive bunting with the help from my Personal Assistant, and it’s the first year in a really long time I’ve been genuinely excited for Christmas!
Please comment below to tell me your news, and whether you’re looking forward to Christmas or not?
by The Chronic Chronicles | Oct 26, 2014 | Employment/Work, Opinion
As I’m sure most of you have heard, a couple of weeks ago Lord Freud suggested that some people with disabilities may not be worth the minimum wage, and some could be paid £2 an hour instead for employment. His off-hand statement has of course garnered a backlash including calls for his resignation and a petition asking for him to be fired. Lord Freud has since apologised, releasing a statement stating that he has been “proud to have played a full part in a government that is fully committed to helping disabled people overcome the many barriers they face in finding employment.”
However, this statement couldn’t be further from the truth. The government have in fact done the opposite and driven many people with disabilities out of work, by cutting vital support in the form of the Disability Living Allowance to Personal Independence Payment transfer; removing Independent Living Fund, cutting funds to councils for Direct Payments and reducing what support Access to Work will fund. These cuts tell a different story, and leave many people with disabilities having to reduce their hours, change the type of work they can do or leave employment entirely.
Working with a disability can often be very difficult, both in terms of securing employment, the on-going difficulties some face with juggling their health and work, as well as employers and colleagues attitudes.
What is Access to Work?
Access to Work is a scheme set up a number of years ago with the aim of helping people with disabilities attain and remain in work. It’s worth around £80m a year, and can be used to pay for a range of equipment, adaptations and assistance. However changes have been quietly happening to the scheme, putting much more of the onus on the employer to fund this support.
Instead of suggesting people with disabilities should work for less than half that of a non-disabled person, the government should instead be increasing funding for Access to Work, and promoting it to employers. Many still do not know it exists, or what kind of help it can provide.
Employers often think that the implication of employing a person with a disability will be that they will cost more, and sadly due to the subtle cuts to Access to Work this is becoming true in some cases.
How did the scheme previously work?
At the time I had my first Access to Work assessment the rules were that if you applied for an assessment within your first six weeks of work, they’d usually cover the cost of any disability-related equipment/support required, and after six weeks it would be down to the size of the company. For a smaller employer they’d still pay, for a medium sized company they’d contribute, and for a larger firm they’d expect them to pay. This was a pretty fair system – and it reduced the risk that a disabled person would not be offered a role because of the extra cost for their support. In that first job I was given a range of items to help me – from a specialist chair, to smaller items that made life easier, such as an electric hole punch/stapler.
How has that changed?
They have now decreed that the company has to pay for pretty much everything.
So by the time I changed jobs and was taken on by a small charity, the rules meant almost everything I’d had funded previously was now not covered by the scheme. My new assessment asked for a specialist chair that included heat to try and ease muscle spasms, a desk that could be raised, an £80 headset so I could answer the phone, a recording device or electronic notepad for taking notes in meetings and numerous other items that directly related to my disability and the role I was doing.
The bill was thousands. My Access to Work Advisor managed to get the chair funded, as the heat function pushed it past a standard item, but what was left was still a lot of money.
I’d just convinced that company to take a chance on me, and had already had to bring up all the reasonable adjustments I needed from them, and now I was supposed to hand them a huge bill? So instead I looked over the list and decided what I really, really needed, and what I could live without even if it made life more difficult, or more painful. Only then did I hand my list over, with my fingers crossed they didn’t find a way to get rid of me. I really didn’t want to be seen as more hassle than the non-disabled person they’d picked me over.
What impact has this had?
Statistics show that disabled people are much more likely to be unemployed than non-disabled people. So my fears that employers see disabled people as more costly are true. It’s very short-sighted of the government, as funding the one-off bill for equipment a disabled person may need to work, could keep that person in a job rather than having to pay for much longer term benefits.
What won’t they fund?
The list of items Access to Work will no longer fund include chairs, electronic adjustable desks, perching stools, back wedges, analogue hearing aids, laptops, temporary wheelchair ramps, voice recorders, anything to do with phones (i.e. headsets, mobiles, etc), writing slopes, staplers, hole punches, and much more.
The fact is that many of those items cost significantly more for a disabled person than a standard work, or the item wouldn’t be required at all without a disability. For example the ergonomic keyboard I was provided cost approximately £60. A standard keyboard is around £20, and probably cheaper if buying in bulk for a whole office. A standard hole punch is around £2.99 and a stapler similar. The electronic one I was provided was £40. These prices soon add up, including a specialist chair without the heated function (£600+), electronic height adjustable desk (£500+) and a laptop for home working (£700+).
What about people that have longer term support in place?
The changes have impacted them also. Those that do have long-term support paid for by Access to Work, such as personal assistants, daily transportation or interpreters are now finding they are having their support constantly reviewed, sometimes even on a month-to-month basis which means they are under a huge amount of stress that the support they rely on could be pulled, or reduced at any moment. Other people are being told that high levels of support are only available to people in certain professions and that their work won’t be covered under the scheme.
The government are shooting themselves in the foot here because by funding the support that somebody needs – for example a personal assistant, means that two people are being employed. Otherwise they’ve got two people on benefits, while they’re pumping millions into coming up with new schemes run by private companies to put pressure onto these people to find employment.
They’re also regularly making changes without a consultation with the user base, or any kind of impact assessment.
How can this be fixed?
People with disabilities don’t want to be told they’re worth less than a non-disabled person, as it’s an incredibly untrue statement. What they do need to know is if they happen to require support to work (and not all disabled people do of course), is that it will be funded by the scheme that was set up for this exact purpose, and that it won’t be stopped or reduced for superfluous reasons.
Increase and strengthen the funding, and see a happier, less stressed workforce, and not so many having to fall back onto the benefit system.
What have been your experiences with Access to Work? Has your support changed? Please comment below with any thoughts/comments on the article.
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by The Chronic Chronicles | Oct 2, 2014 | Education, Personal Budget
This is part four of my series on Personal (care) Budgets. Parts one, two and three can be found here and it’s best to read those first!
What happens when I get the funds?
You can hold the funds yourself – as long as you can open a separate bank account. Online banking is great for this, as you can open one within minutes.
This does mean you will be responsible for payroll, and checking enough is left to cover holidays for your Personal Assistant, although there are DVD-ROMS that can help with this.
You will need to keep receipts for anything agreed, and show your Social Worker when they request them.
The other route is using a Payroll service. Often this is run by a charity or organisation linked to Social Services, and they’ll look after your funds, and pay your Personal Assistant.
You will still be responsible for the budget, and have to make sure you are requesting the right money, as any overpayments will be down to you. However they will provide the payslips, and make sure your PA gets paid, so it’s easier, and they can answer questions too.
My Support Plan has been agreed, now what?
If it’s agreed you can hire a Personal Assistant, there is usually another organisation that will step in at this point to help you with this. I found this very helpful, although I still did much of it myself.
Here were the next steps I took:
- Wrote a Job Description
- Advertised the Job
- Decided how many applicants I wanted to interview and contacted them
- Held the interviews
- Informed those who didn’t get the job, and offered the job to the one who did!
- Contacted references
- Put the contract together
- Sent off for a DBS (which replaced the CRB)
- Got Employers insurance
- Added my PA to my Motability Insurance
- Got a start date in place
The Job Description
This usually contains a line of information about yourself, perhaps your age and what your disability is, or what your specific issue is.
Some examples could be:
- I am a 39 year old man who has a chronic condition which affects my mobility and wellbeing. He is looking for a kind PA who can create a routine.
- A 50 year old lady with ME, who is a part-time wheelchair user, who would like to get out into the community more. She would like someone caring, and patient to help her.
- I am an 18 year old lady who cannot walk, or talk, and requires 24/hour support.
The next is listing the jobs you will expect them to do. It isn’t an exhaustive list, but it is helpful to give examples because I believe the first step to finding a good fit is making sure you’re on the same page. The PA I chose had carefully read this list, and pointed out where we had similar interests, and what she’d enjoy. It also clearly fitted around her own life, which gives you security they’re not going to leave you straight away.
One lady I interviewed asked beforehand whether I could make the hours full-time. This concerned me, because it made me feel she’d be still looking for a full time job. I still interviewed her, and didn’t really ‘click’ with her, but when I emailed her to say she hadn’t got the job, she responded to say she’d been offered a full time job elsewhere. So I was right to have had those concerns.
When it’s a part-time position, you need to know they’re happy with those hours, or have another opportunity they could fit around you.
Make sure to mention any pets you have. It’s no good having a PA who is allergic, dislikes or is scared of the pets you have.
Mention any hobbies, particularly if the PA will have to get involved. I made sure to write they would need to support me to go swimming, because again I knew I would want to go regularly, and if they hated swimming, or couldn’t swim, it wouldn’t be a good fit.
I know of someone else who hired a PA, and didn’t mention that her hobby was heavy metal concerts. The PA then refused to go – which meant she had to miss out.
Example of Job Description:
Job title: Usually ‘Personal Assistant (care). You can also state male/female here if your PA will be doing personal care and you have a preference.
Salary: the amount you will pay
Hours per week: Also state here if there is any flexibility so you don’t put anyone off who could do it if something slightly shifted. If it’s set in stone though, that’s fine!
Location: the town you live in, and maybe the first part of your post code. For safety reasons you don’t need to be more specific.
Description: This will be the line about you as discussed previously.
Duties:
- To support me to access the community, e.g. shopping, visiting friends, medical appointments, weekly heavy metal concerts.
- You will need a full clean driving licence as you will be expected to drive my car.
- You may be required to assist with some light gardening.
- You will be required to do some household chores, e.g. laundry, bed changing, ironing and hoovering.
- You will need to push me in my manual wheelchair, and lift it in and out of the car.
- To support me with my personal care, including washing, dressing, etc.
- You can also state if you don’t allow smoking by adding: “The employer operates a no smoking policy.”
Finally, you don’t want anyone nit-picking if you ask them to do something you forgot to put on the list, so a good catch- all sentence is:
“The above is not an exhaustive list of duties and you may be requested to undertake other tasks as and when required commensurate with the role of a Personal Assistant (PA).”
Advertising your job
The organisation helping me automatically put the advert on the JobCentre website, and their own.
When applicants slowed, I also added the application to Gumtree, and Indeed – both free sites. You could also advertise it on Social Media sites, but please do be careful of your privacy, and ask a friend to post it rather than yourself.
How to pick the candidates?
Obviously there is no set rules here. The application form the organisation I worked with used was pretty short, and while you don’t expect applicants to have to write essays, you do need something to go on.
There were two questions that allowed them to expand, and they were ‘hobbies and interests’ and ‘Anything else you’d like to tell us’ type questions.
I tried to make sure they’d actually read my application and met the basic criteria. (I had people apply who couldn’t drive, and this was vital for me.) I also wanted someone that could help with paperwork, and so looked for a good level of spelling/grammar. Everyone makes typos, but I would expect someone to proof read the shortest application in the world!
I also looked for people whose hobbies matched my own. However, it’s really hard to tell what people are like on paper. They can write a great application form, but be awful in person, and of course vice versa.
The next part will cover the interview process, and inducting your new Personal Assistant.
by The Chronic Chronicles | Sep 29, 2014 | Education, Personal Budget
This is a series on Personal Budgets, accessed through Social Services. Please read parts one and two here first.
The creation of your support plan and who can help
This should be the first stage where another organisation will get involved. You are perfectly entitled to write your support plan by yourself, but in each area there is usually another organisation or charity that will help you. They should help you through every step of this process, but some are better than others.
Before I started this process I was warned that they will often want you to be an “easy” client i.e. write a Support Plan that goes along with what the Social Worker has agreed, submit it and they get paid. Unfortunately I was not one of those easy clients, because I didn’t just want to go along with just the PA hours, but make a case for some massage treatment. I’d been using my savings to pay for them, which were drying up, and they’re pretty much all that keeps me going.
As soon as I mentioned this, my ‘support’ dried up pretty quickly. I was told a few times it wasn’t possible, then I didn’t hear from her again – even when I submitted my final Support Plan I wrote myself for her thoughts. So it took me weeks to put my plan together, when with some help it could have been much quicker.
However, this will be down to who you get, and I’m sure some organisations have the best interest of the client in mind. if your Social Worker is backing you anyway, it should all be quite simple.
What will my Support Plan look like?
The Support Plan sets out all the help you need. I was told that this is the only document that the social worker sends through to have your budget approved, and so it is important that you explain who you are as a person.
Generally you’ll start off by talking about interests and hobbies, what your disability is and how it impacts you. You might talk about what’s important to you as a person, and then each of the problem areas highlighted in your Review.
Your eligible needs will be listed, for example: accessing the community, everyday living tasks, your physical health, your mental health, moving around, and relationships and under each of these headings you need to write what support you like to be given to help you meet each of those needs.
Under every day tasks, you may say a PA would enable you to have help to get up and dressed each day. Or you may say under accessing the community that a PA could drive you to your friends, or to a class each week. You don’t need to be specific and list every task they’ll do, just give a vague idea, and the time you’d like for it. You can write more than one task under each of the categories.
How do the costings work?
You need to convert each of what you’ve asked for into a financial payment, that adds up to the amount you’ve been allocated.
In my area of PA our gets allocated £11.28. (This includes holidays and all the other things you need to think about as an employer, this is not the amount that they get paid to them directly.) Using this you can then work out how many hours that you could get each week, and then each day.
This can be broken down further i.e. I asked for a certain amount of hours my care needs, certain amount of hours for getting out community, a segment of hours for going to appointments, etc. You don’t need to justify what you do within those hours, by giving specific tasks and timings. However if something takes you a particularly long time, such as bathing or getting dressed, you could use this to justify additional time.
Don’t forget about contingencies as well – what happens if your informal carer becomes ill? What happens if you become severely ill and need further help? You need to build all of this into your budget, by allowing for additional hours for a certain amount of weeks for various scenarios.
You also get given in your first year £200 extra. This covers a DBS check (formerly known as a CRB check), and employer liability insurance.
What can happen when I ask for the help I need?
Obviously everyone has different experiences, but something I’ve found is there isn’t much transparency in the system. At all. There don’t seem to be clear documents setting out what is and isn’t reasonable, and if you ask for one you get told everyone is different and they assess accordingly.
I kept being told certain kinds of therapies/activities I was asking for wouldn’t be covered in the budget, and they didn’t have that kind of money anymore. However, that’s not how a budget works. You’re given an amount before you can lay out how you want to spend it, so I wasn’t asking for any more than I’d already been told I could work up to.
And, if your budget doesn’t meet your needs – the budget isn’t right! So this is where it gets a bit complex, as sometimes the Social Worker simply tells you “no” without explaining how to go about challenging their answers.
So, how do you get what you’ve asked for?
The most powerful thing you can do is provide evidence upfront. I didn’t do it for everything I’d asked for, because I could clearly see where my Social Worker was supporting me (a PA, contingency plan), and where she wasn’t (massage therapy.)
You can go about this two ways. Write and submit your support plan. If they reject it, you can then submit evidence and it goes above your Social Worker to a panel, who will decide.
I could see quite clearly it was going to be rejected, so I gathered all my evidence upfront.
What does the evidence need to say, and who should write it?
I will continue using the example of the massage therapy, as that’s what my challenge was based on – but this could be on a gym membership, an art class, gardening equipment, additional PA hours, or anything.
Remember how I explained how they broke down everything into five categories? Again, these are:
- Access to the community
- Everyday tasks
- Relationships
- Risk and safety
- Support and advocacy
They also generally add on physical and mental health to these for the Support Plan. These categories are what you should target when writing your evidence.
Take massage therapy – the condition I have causes horrendous muscle tightness and spasms. My evidence could have said it is quite clearly a health need to have this treatment, as massage is the only treatment that helps this part of my condition. However Social Services would have rejected this argument on the basis of it being a health need, and therefore the responsibility is with the NHS to fund it. (It doesn’t matter if the NHS won’t fund it, the evidence would still have put it into that category.)
Social Services puts all the importance onto the five categories above, and so your evidence always has to work within them to explain how it will impact your life if you didn’t have whatever it is you are asking for.
My evidence focused on the fact that without massage my pain levels would be so high I’d be stuck in bed for weeks at a time, having to significantly increase my pain medications, etc and as a result I wouldn’t be able to access the community. That’s the significant part.
I also argued that as my pain levels increased, my ability to function which decrease and as a result would need significantly more help to carry out everyday tasks.
You have to make similar arguments for every single category, (or at least as many as you can). You can also make more than one point for each category – as long as they’re all true of course!
The more evidence you can provide, the better. In my case my GP wrote a similar letter from their point of view, and my massage therapist also wrote a very detailed letter.
Think outside the box here, while obviously letters from consultants, GPs, physiotherapists and other medical professionals are great, letters from family members, close friends and, neighbours etc are just as important, if somebody has witnessed what a difference a specific activity or piece of equipment could make your life – just have them summarise that in their own words.
It’s also really important to write one from your own point of view. You can either talk about how vital it is to you to continue with an activity, or what a difference it would make to start doing something new. Think about key aspects such as confidence, self-esteem, quality of life, well-being and respite.
I can’t guarantee that this approach will work for everyone, but the better quality your evidence is, the more chance you have to keep fighting and appealing.
Remember you can appeal your Social Workers decision.
What if I get really overwhelmed by the whole process?
If you’re finding yourself getting stressed and upset trying to get a Personal Budget, or your Social Work is being particularly obstructive – it might be a good idea to get an independent advocate. Each area should have an organisation that receives funds to advocate for specific groups – such as people with disabilities. You could also approach charities such as MIND, if that’s appropriate for you, your Care Advisor attached to your GP surgery, Welfare Rights linked to your council, Scope or DIAL.
Every area will have different organisations, and may not have all the ones listed above. Google the name of your county followed by ‘advocacy’ or phone CAB and ask who provides advocacy if you’re getting stuck.
Try to do this is as soon as you can, as often there is a wait. Often the Advocate won’t do it for you, but will come to meetings with you, suggest the next steps, or even talk to your Social Worker.
I had one, who was very good – and after a phone call to my Social Worker things suddenly became much easier. So it’s worth having one if you can.
Part four will cover where the funds will go, writing your job description for your Personal Assistant and advertising the job.
Continue with part four here.
by The Chronic Chronicles | Sep 26, 2014 | Education, Personal Budget
This is the second part of my series on Personal Budgets. Please start with part one here.How does the assessment work?
When you eventually get assigned a social worker they will visit you to carry out an assessment. Don’t worry too much about this, it’s much more informal and relaxed than a benefits assessment, or something like that. They should be trying to meet your needs as best they can, and you have every right to have a say in this, and correct anything they get wrong.
The assessment isn’t usually a very specific question and answer session, but more of a chat that then gets converted to the information they need. However, if you’ve already thought carefully beforehand about the areas you’d like help with, you could write it up and give it to them, or simply make notes of specific points to say. It’s really up to you, and your social worker should find a way that makes you feel comfortable.
After this visit, the Social Worker will go and input all the information into their system. This is called the resource allocation system (RAS). A lot of people think you’d ask for you what you need first, and this information would get converted into an amount, but this isn’t how it’s done. It’s based on your circumstances and the level of help you require.
In some ways it’s a bit like a hidden points system, as the higher you score, the larger your budget becomes.
The way the review is set up is quite onerous, as not everyone’s situation always fits into the exact questions that they ask, but the social worker has no choice but to try and mould you to fit this form.
What does the review form look at?
It will begin with your details, your disability and how it affects you, your current care situation and your carer, anyone you care for (i.e. children), and your views/aspirations.
It then breaks the assessment down into certain criteria that they look at, which includes:
The Social Work has to answer the questions relating to each of these areas, and assess how high your need is.
I will give you an example of one of these, just so you get an idea. Under ‘Everyday Tasks’ one of the questions is on food and drink.
The options include:
- I am able to feed myself
- I need some help to feed myself (.e.g. cutting up food).
- I need to be encouraged or helped to eat.
- I am unable to feed myself without support and this needs to be done for me or with me.
The Social Worker has to select one, but if you don’t agree, you can ask for it to be changed and explain why. If at the end your budget doesn’t quite meet your needs, this is a really good place to carefully review and make sure each of the options fits your situation. Sometimes we make snap judgements about ourselves, such as, “Well of course I don’t need prompting to eat!” But sometimes if you think about it, sometimes this might apply when you’re in a lot of pain, or exhausted and don’t feel like eating even if you’re hungry. So maybe sometimes encouragement or help does happen.
The second part of the review form is looking at banding your needs, based on certain activities you would like to do. For example if you stated during your assessment that you cannot drive, the Social Worker will need to think about how this will impact you in each of the categories above. So taking the driving example, they may decide that not being able to drive could put you at risk of not accessing the community, and it would impact your relationships as you could become isolated. Each of these areas of concern will be assessed using the fair access to care eligibility criteria, and put into one of four bands: critical, substantial, moderate and low. The council has a duty to address any needs that are either critical or substantial. So carrying on with the driving example, they could say that they think you not being able to drive would very likely end up with you being isolated, so they may rate that as a substantial need that has to be addressed.
When you then get your budget, you must be able to ‘solve’ every issue that’s either critical or substantial. So the driving issue could be solved by hiring a Personal Assistant that can drive for you. However, this comes later in your Support Plan.
What you will need after the assessment has been carried out is a copy of your Review Notes, and the amount of your budget. Make sure at this point you challenge anything that’s not right about your Review Notes.
Sometimes your Social Worker will tell you your notes are now locked, and they can’t change it. If this is the case – tell them you need a review meeting. (It sounds ridiculous to have a review meeting before anything has happened, but this is down to the old-fashioned RAS system).
Once you’re happy with your Review Notes, and your budget, this is the point where you really get involved, and can start carving out the solutions to your problems in your support plan.
What doesn’t the assessment include?
Something I found off when I was assessed is that cleaning time isn’t included in the budget, nor things like help with pets or gardening.
So they’ll help you get out of bed, get washed and dressed and expect you to sit in squalor. While your dog starves in the corner. Lovely!
The reality is that once you’ve employed a Personal Assistant, you can ask them to do anything (within reason) and you’ll notice most adverts do mention cleaning of some kind. If Social Services give you time for something, you don’t have to use it for that task. You can shift tasks and timings around so everything you need gets covered.
It’s worth taking to your PA about this during the interviews, and checking they’re happy to do the cleaning, walk your dog or pull up some weeds. It’s all about being upfront to make sure you’re all on the same page.
The Means-Test
At some point after your assessment, you will go through a means-test, usually carried out by your local County Council. There will be one of three outcomes after this test – you will have to pay everything, you’ll contribute towards the budget, or you’ll pay nothing. Your first £6000 worth of savings aren’t counted. There are also some other exceptions that also don’t count – such as a benefits back payment, or injury compensations.
Just because you receive income-related benefits, doesn’t mean you will pass the means-test. However, out-goings are taken into account – particularly those related to your disability.
To prepare obtain receipts for anything disability related. Do you have a cleaner, or gardener? Other things that count are if you pay for any therapies such as massage, counselling, osteopathy, or chiropody for your feet (or anything similar, these are just some examples!)
There are other categories as well such as if you buy anything medical that’s not on prescription – cream, joint braces/tubi-grip, etc. You also get an allowance if you need to wash clothes more than normal.
All of this information will be inputted into an income/out-goings sheet, and will calculate what you will have to contribute, if anything.
The next post will talk about creating your Support Plan, and how you may need to get past the ‘computer says no’ attitude from Social Services.
Carry on with part three.
by The Chronic Chronicles | Sep 22, 2014 | Education, Personal Budget
About a week ago I finally had my Personal Budget sent from my county council to my elected payroll service. It was a long, stressful road – mostly because I had no idea what I was doing, and couldn’t wrap my head around the lack of transparency in the system.
I’m not an expert, but I wanted to share what I learned on the way, and to encourage more people to apply for a budget. Once it’s in place, it could really make a difference to your life.
This will cover the basics of getting a budget. Next week I will move onto how to find a Personal Assistant, and the basics of becoming an employer.
How do I get the help I need?
A few years ago the new buzzword became ‘Personalisation’ in social care. The idea is that people with a disability should be put in control of any help they are assessed as needing by Social Services. For example if someone is assessed as needing care, Social Services could link that person up to an agency. They won’t know who is coming each day, and their visits may be fitted in around other clients – rather than when is right for them. Instead a budget would allow the person to be given the ability to employ someone directly, therefore having chosen and vetted the person caring for them, and that person then working to their specific routine. The budget then gives choice and control to the person needing care.
The idea behind it is very simple, although getting it all in place can be a little more complicated. However, it’s still a great improvement, and once you’re fully informed on how the system works, it can make a great difference to your life.
The one negative that I will say up front, is that the idea behind them is that once your budget has been assessed, you can spend it on whatever helps you to meet your assessed needs. But this ethos seems to have changed though (of course along with the many other welfare cuts) to “the smaller we can get your budget, the better!” However there can be ways around this to try and stop that happening.
Eligibility for Personal Budgets
People with disabilities are the target for the budgets (although they do exist for carers and older people who may not see themselves as disabled), and they are usually for people who need some kind of care – although not always. The Fair Access to Care Services (FACS) is the guide that councils have to follow when assessing your needs. There are four defined eligibility bands – critical, substantial, moderate and low. It’s a good idea to read the guide to see how they break this down. All councils have to meet critical and substantial needs. Some also meet moderate, and others meet all four – but this will depend on the size of the council’s overall budget, and the need in their area. I will explain later on exactly what they’re assessing with these bands.
How do I get a Personal Budget?
In summary here are the steps that lead to a personal budget:
1) Call Social Services
You can self-refer. Find your local office by searching ‘Adult Social Care Direct’ followed by the county you live. Ask for an assessment for a Personal Budget.
2) Have a telephone assessment
They aren’t that in-depth, you most likely just need to answer a few questions about what you’d like to achieve with a budget. You don’t need to go into detail here at all, I think it’s just to give them an idea. However, it is important to mention any particular difficulties in your circumstances i.e. any issues with your current informal carer, if your health has taken a dramatic downturn, you’ve been injured, or any impending major life changes, such as a pregnancy, etc. They then use this information to prioritise cases.
3) Wait a really long time
The next step is being assigned to a Social Worker, and this is usually where there is a long waiting list. I think I waited about six months, but some areas will be shorter, others longer.
4) Have an assessment by a Social Worker
This is where things start to happen. A social worker will visit you and find out all about you, and the help you’d like. They use this information to generate your Personal Budget amount.
5) Have a means-test to see how much you will have to contribute to your budget
You may not have to pay anything, you may have to pay towards your budget, or you may have to pay for everything.
6) Create your Support Plan
Once you know how much your total budget is, you need to work out how you’d like to spend it. This document then gets submitted back to your Social Worker for approval.
7) Argue back and forth if they won’t give you what you need
This is the part where you need to make your case about why you’re asking for what you are.
8) They agree it, and the funds get transferred
There are a few options of how the money is managed. You can do it yourself, or another organisation can do it for you.
9) Go!
Spend it as you set out in your budget.
What kind of help can a personal budget provide?
If you have a look at the information online about personal budget it will tell you it can provide help with all kinds of interesting and helpful things. For example here is what the charity Mind say a personal budget can pay for:
- getting help with cooking, shopping and cleaning
- having short breaks or a holiday
- leisure activities, e.g. an art class or a walking group
- having driving lessons
- buying specialist or computer equipment to make life easier
- buying membership of a gym or sports club
- finding a job or learning new skills
- having an aromatherapy massage or other alternative therapy
That all sounds really great doesn’t it? You start thinking about respite breaks, being able to swim weekly when you haven’t been able to afford it before and so on. And it’s true when the budgets first started these are the kind of budgets people were getting.
However, as you can imagine budgets are now being squeezed. It’s not that you absolutely cannot get any of the these things provided, it’s just a lot harder.
You definitely need to be able to fight for it, and have the right support because it’s most likely your social worker will tell you it’s impossible to get this kind of help. They will have been told by their managers to keep budgets as low as possible, and often won’t give you the information you need to be able to apply for that kind of assistance.
Most of the support they will want to offer you will be around having a personal assistant if that’s something suitable for your disability and needs. They may still try to get the hours as low as possible in many cases, so you need to be on the ball and be able to justify your needs.
I just want to make it clear here I’m not necessarily blaming the social workers – I’m sure there are a lot of social workers out there who are still fighting for the best interests of the client, however when they’re getting edicts from above that budgets must be as small as possible and they’ll be queried as to why they’re not, it must be pretty tough on them. That’s why it’s really important that you know your rights so that you know how to get around the information that you’re being told.
What is a personal assistant?
A personal assistant is the new fancy way of saying carer – except carer can sometimes have a negative connotation of being “looked after”. It also takes into account that your PA will do a lot more than simply care for you. There is such a range of disabilities and needs out there, but not everyone needs a PA to get undressed and feed them for example, although of course some do. You may be perfectly capable of doing that yourself, that need someone to drive you to appointments, or support you with your paperwork because you get overwhelmed, or to come to activity classes with you because you need a little bit of extra help – there are so many things a personal assistant can do.
What if I already have a carer?
This is completely your decision, but sometimes I find in some situations a carer has become a carer out of necessity, rather than it being completely right for either your needs, or their lives. Over the last two years my mum has become my informal carer but she still works. This means that she has to take time off work because of my appointments, and that her availability to help me is quite limited. I also feel she doesn’t really get a rest from work – as all her annual leave is spent on my appointments, and doing things I need to do, rather than on fun activities. So it doesn’t quite work as well as it could.
I think a lot of people have relatives that have become their carers, such as their parents, spouses or children. And they may feel this is their only choice, but it’s not. You are entitled to have a relationship with your parent, spouse or child that remains as it should be – without the added extra stress of them being a carer also, unless you are both perfectly happy with this arrangement. In which case – carry on! But the important thing is that Social Services cannot argue that as they are currently caring for you, this must continue.
Normally a Personal Budget will not allow you to pay a close relative – particularly one you’re living with to care for you. There are some exceptions though, like where it would cause extreme distress for anyone else to do it. It has to be a pretty big reason, but it’s possible. So talk to your Social Worker if you think this may apply in your case.
Part Two is available here. It will cover:
How will the assessment work?
What areas of your life will the review look at?
How does the means-test work, and how should I prepare?
by The Chronic Chronicles | Aug 30, 2014 | General Posts
Fabulous Blogging is a Google+ community run by Julie DeNeen, of the website also titled Fabulous Blogging, which gives tips and assistance to bloggers and website owners. The Google+ community is separate from the website, and is aimed at bloggers helping each other, and sharing resources.
The community used to host Blog Critiques, but a lack of time meant Julie was unable to keep doing it, so I recently took over.
Bloggers put themselves forward, and every Wednesday a new blog is put forward for critiques for one week.
The more people that take part, the better it will be – as a range of opinions from different people make for richer feedback.
If you’d like to take part, please email me at info@chronicchronicles.co.uk.
Here are three buttons to put on your blog to promote the critiques, but also to remind you to visit us each week to take part! Please link them here: https://plus.google.com/u/0/communities/102936376054695383340 The new critique will be pinned to the top of the community each weel/
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by The Chronic Chronicles | Aug 27, 2014 | Access, Reviews, Trips Out
I’ve just got back from a couple of nights away at a lovely cottage in Mildenhall, Suffolk nearby Thetford, called The Walnuts.
Over the last few years, the distance I can drive, even as a passenger has reduced (see the post Cars Vs Sleeping). It’s usually about an hour as the maximum. However, I also find that it’s very rare for me to be in a car for longer than five minutes, without falling asleep!
I don’t usually go away for long, as my cats get stressed in the cattery, so if I do get a chance to go away, it’s as close to home as possible. It’s a shame as I’ve love to see more of the country, but there are some beautiful places nearby so I’m lucky.
One way I’ve found to slightly increase the distance I can travel is to recline the seat right back, and cover it in pillows. I’m usually asleep before we get on the motorway, and only wake up when we arrive! It helps reduce the pressure on my spine, so I’m not such a mess when I get there.
The Walnuts had a Groupon offer, which I sadly just missed, but when I phoned to book the owner was kind enough to honour it. The deal included a BBQ pack, but there are other options if this doesn’t appeal to you.
In terms of accessibility, there are a number of cottages on site, and all except one have the bedroom/s upstairs. The one that didn’t is called ‘Inglenooks’ and has everything downstairs, so that’s the one I stayed in. One of the good things for me about going away for just two nights, is the battery in my wheelchair lasts that long, so I can leave it in the car. That I don’t have to worry about getting it in the cottage. There is parking directly outside the cottage, which is handy if you can’t walk far.
The cottage wouldn’t be suitable for a full-time wheelchair user, as it doesn’t have level access. Each room has a raised threshold (not a step, but more than enough to stop a chair.) There is enough space for a manual wheelchair to be folded up, or stored in the bedroom, or living room – so if you don’t need to use it all the time, but want it keep it with you that’s an option. The biggest step is the one leading into the private garden. There is no bath, just a shower, and there is a small step into it.
The threshold into the bathroom
The larger step into the garden
We received a warm welcome when we arrived for one of the owners, and he showed us how everything works including the private hot tub. It was quite chilly when we arrived, as the weather had suddenly turned cold, and so he lit the open fire in the bedroom.
The fire lit
My first impressions were very good. The living room contained a sofa and a table and chairs. The flat screen TV was placed on a lovely book-style table, that opened to find a selection of DVDs and menus. The lamp was quirky and made out of a stack of tea-cups.
The bedroom holds a queen size four poster bed, and another flat-screen TV on the wall. There are nice little touches like fresh flowers on the dresser, and chocolates on the bed. There is a sofa and arm chair next to the open fire, and a book shelf with a small range of books – and it was lovely to sit next to the fire and read.
In the bathroom they had provided towels, robes, shampoo/conditioner, body moisturiser and body wash.
Waiting in the kitchen was a large breakfast hamper containing bread, jams, marmalades and honey. A range of cereals and porridge, salt and black pepper, fruit, tea/coffees and cookies. In the fridge juice, milk, beer, wine, butter, yoghurts and bottles of water. In addition was the BBQ pack, which included a range of meat, portable BBQ, marshmallows and sticks! There is also free wifi, and each TV can play DVDs.
Also in the garden along with the hot tub is a place to sit, and a real BBQ, but our attempt to light it failed!
One of the owners also provides treatments – including relaxing massages, beauty treatments or full-packages, although the room for this is up a steep flight of stairs. She did manage to provide a downstairs room for my treatments, so definitely mention this when you book.
The only negative for me was that the sofa was pretty uncomfortable, which made it hard to relax. Most people I’d imagine would use their cottage as a base to sight-see, but the weather kept us in a lot, and so this was a pain for me. (Quite literally!)
All in all, a lovely stay, and I’d love to come again in the summer months when the garden could be made full use of.
Have you had any nice trips away this year? Tell me about them in the comments below!
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by The Chronic Chronicles | Aug 15, 2014 | General Posts
Today Rena McDaniel and I have swapped blogs!
Read her post on Felty’s Syndrome here at The Chronic Chronicles: ‘What in the world is Felty’s Syndrome?‘
Read my post on her blog The Diary of an Alzheimer’s Caregiver: ‘How my life has changed since having Ehlers-Danlos Syndrome’
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by The Chronic Chronicles | Aug 15, 2014 | Awareness
Hi my name is Rena McDaniel and I write two blogs: The Diary of an Alzheimer’s Caregiver, where I deal with being a caregiver while dealing with my own diagnosis of Felty’s Syndrome. The other is The Million Mile Blog, it is a travel planning, review and tips blog. I live in South Carolina with my husband of 23 years and my mother. I have two children and two grandchildren (with #3 and 4 coming in December when my daughter has twins!). Thanks so much to Jade for hosting me today.
Felty’s syndrome is a complication of patients who have rheumatoid arthritis. It is diagnosed by the presence of three things: rheumatoid arthritis, an enlarged spleen and an abnormally low white blood cell count. Patients with Felty’s syndrome can have more infections than the average person and can develop leg ulcers. Felty’s syndrome is uncommon. It affects less than 1% of people with rheumatoid arthritis.
I was diagnosed three years ago with Rheumatoid arthritis. I was sick for a long time before this diagnosis. At the time I was being treated for a car accident that I had in 2009. At first I was just sore all over, especially my left arm and neck.
I was first diagnosed with a strain. After I went back to work I began to have more problems. One day my feet would be sore and swollen and I would secretly take off my shoes to work. The next day my hand would be swollen or it might be my shoulders. I was then diagnosed with Fibromyalgia. I tried physical therapy, acupuncture, medicines etc. Nothing seemed to work. It got so bad that I was no longer able to work. I couldn’t drive because I couldn’t raise my left arm or look over my shoulder. I kept getting treatment and it seemed I was getting worse. I finally just gave up and for almost a year I was pretty much bed ridden. Things were happening in my life that were stressful: my son was serving in Afghanistan, my husband getting laid off, my daughter graduating and both of my children getting married. Everyone kept telling me I had to fight this and I don’t know how many times I heard that it was all in my head. All I knew was I felt very sick. I couldn’t eat because my stomach was so swollen. I quit having bowel movements. I went on this way for a long time and I honestly felt like I was going to die.
My husband finally talked me into going to the hospital ER. They ran tests and my blood counts had bottomed out. I don’t remember a whole lot of what happened, there was alot going on at once. I remember a doctor telling me I was very sick and that if I had waited another three hours I would have died. I was given three blood transfusions and put into the ICU for about a week and a half while they ran, as they told my husband, every test from A to Z. I had eleven doctors total. This is when I was diagnosed with RA and I first heard the words Felty syndrome, even though it wasn’t explained to me. I admit I was just glad not to hear it was all in my head. At first the doctors didn’t think that I would survive they called my family in. My siblings from SC and FL soon arrived. My son was statio
ned in Japan at the time and the Red Cross flew him home. I will always be thankful for that.
As you can see I did survive. I spent three and a half weeks in the hospital. When I was released we packed everything we had up and moved to SC to start a new life. My husband had a new job with medical insurance, even though I was preexisting for the first year. That is what started this journey through the ups and downs of Felty’s Syndrome.
Today with the help from a great Rheumatologist and a new infusion drug called Rituxan I am able to live a somewhat normal life. I still have to be careful about infections but I can take care of mom and do most of my house work. I don’t vacuum or mop anymore, I can’t lift things very well and sometimes I just get so tired I can barely stand up. But I am alive and very thankful for all the help and support I get from my husband and family. My husband does the manual work that I am unable to do and between the two of us we have made a great life in South Carolina.
Follow Rena on twitter at: @rm29303
You can read my post on the topic of ‘How has life changed since you’ve had a disability?’ over at Rena’s blog here.
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by The Chronic Chronicles | Aug 13, 2014 | Access
A Wheelchair Hoist with a Difference
This amazing hoist is perfect for full-time wheelchair users, but also part-time users who find it difficult to stand at the back of the car to operate the hoist (which can be pretty slow). The only problem is the huge weight difference between a manual chair and an electric. I would imagine a hoist like this would struggle with an electric chair, but hopefully this will be the future. It would also allow smaller cars to be used, when people don’t want to drive vans in order to transport their chair.
A Hidden Lift
How many times do you find the ramp or lift into a building is tucked around the back of a building? Or it’s resented for spoiling the aesthetics of a building? Think of all the historical locations that have no access at all. This is the perfect solution – the look of the building can be kept and the ramp can be located in the most convenient location. It looks like in this video a second person is needed to operate it, so as long as that could be resolved, this is ideal.
Converting a Manual Chair into a Scooter
These have been around for awhile, but it’s nice seeing a video of one, and how easy it is to use. A lot of people use manual chairs, but may struggle on longer distances, rougher terrains or hills. This looks like it could be kept in the back of the car to be used when needed, and looks really fun too!
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Which is your favourite innovative accessibility solution? What do you hope they’ll invent one day?
by The Chronic Chronicles | Aug 4, 2014 | General Posts
I thought it would be fun to do something a little different, and picked a random ‘getting to know me’ questionnaire.
1) Do you have a middle name? Yes.
2) What was your favourite subject in school? English, History and then later Politics, which I then did a degree in.
3) What’s your favourite drink? Diet Doctor Pepper, but I’m trying to give it up. I’m allergic to most squashes/juices, and don’t drink hot drinks. I’m trying to just drink water, but it’s difficult. I’m doing quite well on my water-quest at the moment, but haven’t made the full leap. I rely on the caffeine to wake me up.
4) Favourite song at the moment? I like Troye Sivan’s new song Happy Little Pill.
5) Summer or winter? Summer all the way. I struggle in the heat, but it’s nothing compared to the pain of winter, and I despise snow. Don’t get me wrong, the morning it snows and everything is clean and white is beautiful, but then it represents being trapped from going out, as I had a nasty fall once, and now I’m a total wimp about it, even in my wheelchair. Plus the sun always improves my mood, and makes everything seem brighter.
6) Do you participate in any sports? No. I am looking forward to swimming as soon as I have a PA employed.
7) Favourite Book? I really like The Name of the Wind/The Wise Man’s Fear by Patrick Rothfuss, and I can’t wait for the final book in the trilogy to be released.
8) Favourite Colour? Raspberry pink.
9) Favourite perfume? Anna Sui – Sui Dreams, but I believe it got discontinued this year sadly.
10) Favourite holiday? My mum and I went to the New Forest when I was about 18. I have a list of places I want to visit in the UK, and we managed to visit a number of them including Oxford, Bath, Bournemouth and Stonehenge, and I loved them all. I can no longer drive for long periods, so holidays are very difficult. Sometimes just a night away somewhere nearby is nice though.
11) Have you graduated High School? No, but I finished secondary school! We don’t ‘graduate’ from that in the UK, it just comes to an end.
12) Have you been out of the Country? When I was 2 I went to Tenerife with my parents. My first memory is from that holiday – watching a mother with two sons playing on a basketball game, and wanting to join in. I’ve also been to France three times – twice on school trips, and once for a week for a holiday when I was 10. I would love to travel more, but it’s so difficult now. I still hope to, one day!
13) Do you speak any other Languages? Sadly not. I wish I could, but my French teacher wasn’t exactly inspiring and I had no aptitude for it, but I do believe we leave it much too late in the UK to introduce a second language. It should be started in primary school.
14) Favourite Animal? Cats – and I have three.
Button and Bailey
My little cat Pepper sleeping in a bead box.
15) Do you have any siblings? No.
16) What’s your favourite store? No specific shop, but something crafty, or even better one that sells beads! I generally hate shopping in actual shops though, but love online shopping!
17) Favourite Restaurant? I really like Old Orleans, although many of them have shut down. There is also a Chinese restaurant where I live that’s really nice.
18) Did you like school? No. My school was pretty dire, and I really struggled with it. However, I believe it was the circumstances, and if my school had been better, with engaging teachers I would have enjoyed it, as I do like learning. When I finally got to a better Sixth Form College taking subjects I wanted to, it was much better. I’m glad I got through both college and university though, as my health issues hit me badly between school an college. Had it been any later in life, my health would probably have prevented it happening, and I’m so glad I was able to live away from home, and have that experience.
19) Are you mostly a clean or messy person? Horribly messy, I’m afraid. I manage to create mess no matter how hard I try.
20) Favourite Movie? It’s really hard to pick one, there are so many I like for different reasons. I really like The Green Mile, but there are probably much better picks I can’t think of at the moment.
21) Favourite TV show? Veronica Mars will always be at the top of the list. There are many others I love though – Firefly, Breaking Bad, Battlestar Galactica, Dexter, etc.
22) PC or Mac? I’ve never actually used a Mac. I have nothing against them, but it would confuse the hell out of me to switch to one now.
23) What phone do you have? Google Nexus 4
24) How tall are you? 5″11
25) What do you order at Starbucks? I don’t drink coffee, and rarely drink tea. If I had to go into a Starbucks, I’d probably get a hot chocolate. I think I’ve been into a Starbucks once in my life, and only because it was the only place to go nearby.
26) One thing in your closet you cannot live without? I really struggle with most trousers, because I find the band really painful on my lower back. I live in thin PJ bottoms, and only change into something else if I’m going out/seeing someone. I can only put up with it for a short period of time, however.
27) What’s one thing most people probably don’t know about you? When I in Year 2 (about 7 years old) I accidentally stabbed myself in the hand with a pencil, and the lead broke off. You can still see the little piece of lead in my hand. I’m hoping one day the magical powers contained within will activate.
28) Name one thing you want to do before you die… to be truly content.
29) What’s one food you cannot live without? I have a real weakness for crisps.
30) What quote/phrase do you live by? I like the phrase ‘Home is the nicest word there is.’ Home is always my sanctuary.
31) What’s your most listened to song on itunes? I don’t have iTunes, so I don’t know what the answer is. One album I go back to a lot is Mika’s, and the two songs I listen to most are Happy Endings, and Any Other World.
32) What kind of style would you define yourself as having? I don’t think I have a specific style, but I do like to colour coordinate and match my jewellery, shoes, clothes and walking stick together!
33) Favourite number? 7
34) Hobby? Jewellery making.
35) Two Pet Peeves? I really struggle with ‘noises’ – so someone who taps, or makes a loud noise when they eat, or plays around with things near them or coughs will drive me mad. And also people who don’t indicate when driving.
36) Guilty Pleasures? I watch a lot of guilty pleasure TV shows, such as Judge Judy, Dance Moms, Sister Wives, etc.
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