Credit to Kurhan
Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome.
I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences. However he immediately put me at ease, and was a nice, approachable person.
I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try.
He said in terms of exercise I was doing everything right, and everything I could. This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks. I told him what one Pain Consultant had said – that I should be exercising six times a day. He said it was such an easy thing to say, and proved how little he knows.
We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good.
At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP). I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future – to survive. I never know how people may react to something like that, due all the ‘scroungers’ rhetoric in the media, that has been picked up by so many.
Since I received my diagnosis letter in 2011 – I haven’t had a decent letter from a consultant that I could use as medical evidence. I’ve seen lots of consultants, but letters are generally of the “Treatment x didn’t work, been discharged” variety which won’t help much in terms of summarising where I’m currently at on the whole. I feared the lack of letters may go against me, as the Department of Work and Pensions will argue I can’t be that bad if I don’t see a consultant regularly.
Dr Hakim was very understanding of this, and we spoke at length about the PIP changeover, and he knew how hard it was on his patients. He said it’s obvious the reason I don’t have new evidence is because I’m doing the best I can at home to manage, but he would write an updated version for me to keep on file for when I need this.
This will take a huge worry away from me, so I’m thrilled.
He recommended that I take a multivitamin daily – he mentioned the Well Woman one, to make sure I’m topping up on anything that could be contributing to my levels of fatigue. He’s also going to ask my GP to check every blood test has been done, including the T3 Thyroid test that the NHS often miss out. He also suggested getting some Melatonin from the US, as well as suggesting some other sleep and pain medications I have yet to try that he’s going to suggest to my GP to look into (I can’t remember the name of them currently!) He also recommended some consultations in other fields that I could see if I continue to get nowhere locally.
He also suggested that anyone with POTs or autonomic dysfunction (including sleep problems) to drink an Isotonic drink called Nuun. He explained that they tell people like us to keep hydrated, so we drink water – but it actually make things worse as it dilutes the salt in our blood, so our kidneys then filter it and we pass it out with urine leaving things actually worse. (Or something like that!)
So he suggested drinking a salt isotonic drink which means that we are really hydrated, as drinking liquid with a similar salt content as our blood means it will do its job, rather than being filtered and disposed of straight away. Most of the similar products on the market i.e. sports drinks, Lucozade, etc are full of crap and sugar, so he suggests Nuun as it doesn’t add much else, just some flavouring. He suggested at a minimum to drink one before bed, and one as soon as you wake up, and this should stabilise some of those issues.
They are pretty expensive, but we only need half a tablet at a time, as the whole tablets are designed for athletes.
We also spoke about Prolotherapy, which is a new therapy I’m hearing a lot about recently, mostly from Americans, and I was interested in his thoughts. He said there was no evidence for it, and some of his patients had been made worse by it.
I found Dr Hakim very understanding, kind and obviously knowledgeable. All in all it was a great appointment – and when his letter arrives I will add anything helpful I’ve forgotten!
Professor Grahame retired from NHS patients some time ago, and is no longer taking on new private patients. I believe he may still have a private clinic for under 16s, but Dr Hakim is a perfect alternative.
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.
- 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.
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
- 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.
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.
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.
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.
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?