We’ve produced a new video featuring five top tips for employing a Personal Assistant.
1) Decide what support you need to live the life you want
Make sure you have a think about the number of hours of support that you need. You also need to decide whether you need to recruit more than one PA to support you. It’s a good idea to have more than one person, in case one PA is off sick or on holiday.
2) Think about how you will find the right person
You can advertise in loads of different ways. You could try the internet and Facebook groups. Do remember to keep yourself safe and carry out any interviews in a public place. Some local support organisations may be able to help you with this. Just remember, it might take some time to find the right person for you.
3) It needs to be a business relationship
It might seem like a great idea to hire your friend but remember that they will be your employee. You need to make sure they have the skills and qualifications necessary to do what you need them to. Remember, it’s important to ask for references and to do criminal record checks for your PA.
4) Think about the responsibilities that come with hiring a personal assistant
5) Remember you might be able to get help to become an employer
In some areas, it’s possible to outsource things like payroll and get extra help to become an employer. Your local authority should be able to advise you on what local support and information is available.
We want the next government to deliver Everyday Equality with disabled people. It must put the interests of disabled people at the heart of its agenda, and deliver meaningful change over the next five years to tackle the barriers that prevent disabled people from participating fully in society.
A key part of Everyday Equality is having the right support to live the life of your own choosing. However, there are still a range of barriers that make this difficult for disabled people, from inadequate social care provision, to inaccessible physical environments and digital exclusion.
That’s why we are calling on the next government to ensure disabled people have the support to live independently.
Increasing investment in social care
Social care is an essential public service that supports disabled people to get up, get dressed and get out of the house.
Around a third of social care users in England are working-age disabled people. However, we know that more than half are not receiving the right care to support them to live independently.
This means not enough disabled care users are getting the support they need to live independently, work, volunteer, and live full, meaningful lives.
In order to ensure disabled people are getting the right level of support, it is crucial that the issue of inadequate funding in social care is addressed. Whilst we have seen some recent investment, the funding gap in our social care system is estimated to rise to £2.8 billion by 2020.
That’s why we are calling on the next government to increase investment in social care so that disabled people of all ages are able to access the support they need to live independent lives.
Improving access to everyday services
Living independently means being to have choice and control over your life, whether as a consumer, whilst travelling, or whilst socialising.
However, we know that disabled people often face barriers in accessing day-to-day markets, services and amenities.
For instance, less than a quarter of disabled people think the accessibility of pubs, restaurants, clubs and shops has improved since 2012. In the digital world, 25 per cent of disabled adults have never used the internet compared to 6 per cent of non-disabled adults, often due to a lack of digital skills or inaccessible websites. This means disabled people are more likely to miss out on the best deals and offers which are commonly found online.
We want the next government to ensure equal access to goods and services for disabled people by increasing compliance with the Equality Act, and tackling the digital divide between disabled people and non-disabled people.
Josie, from Bristol, was a nurse until 2008 where she developed a number of impairments which affect her health and mobility.
She has most recently been diagnosed with Mast Cell Activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.
In this blog, she talks about her journey of getting different benefits she needs and the anxious days where her payments stopped completely.
I have a love-hate relationship with my benefits. I am grateful that they exist and that I can live as a disabled person, but I was a worker and I still find it hard that I can’t earn my own money.
When I became ill in 2008, I had just got a new job but hadn’t started yet. After a couple of weeks of no income, I went onto incapacity benefit . This was £ 73 a week. It was so little. Out of that I had to live, pay towards my rent and support my children.
My most heart-breaking moment
I did a depressing budget where I couldn’t afford to see my kids or contribute to them at all. My son asked if I was coming for half term to see him. I had to say no. It was my most heart-breaking moment. At this point, I had been denied three times by Disability Living Allowance (DLA) and was awaiting a doctor’s visit at home.
In 2011, I was moved over to Employment and Support Allowance (ESA). I filled in the 40-page form and got all my paperwork together. I was so worried. I was put in the work-related activity group (WRAG). This involved a trip to the job centre on my birthday. I had two people with me, wore a face mask and hoped I wouldn’t need to get out of my wheelchair and need the toilet.
In 2012 , the job centre invited me again. I was now single and having more reactions so they rang me. I was so so nervous. They put me in the support group and realised I was too unwell to study and other options like office work were a no and I couldn’t even go in a charity shop due to my allergies no matter work in one. So I was released into the utopia of the support group.
It made me anxious and worried
In 2012 , I was reassessed for DLA. My three-year award was up. Reassessment meant a full assessment as if I was applying for the benefit from scratch. I thankfully had an amazing social worker who I will be forever grateful for. Between her and the Occupational Therapist manager, I got all the assessments and paperwork together (again) and was awarded five years. This is due soon and with the move to Personal Independence Payment (PIP), I am not looking forward to it.
This year a work capability form arrived. At first, I thought it was a mistake. I rang, it wasn’t. I can’t write easily or well so I started answering the questions into my laptop. I was worried and scared and avoided dealing with it for a couple of weeks. It made me anxious and worried.
I knew I wasn’t going to be able to achieve it in the time given, so I rang. I was told to get the form back when I could, with no mention of money stopping. Two weeks after the date on the form I had it ready and was going to get it printed by my carer as I get two hours once a week for errands. Then I missed a payment and that day had a letter saying my ESA had been stopped. I rang and it was confirmed.
I asked for help, this took five phone calls. The first said no we don’t have your case anymore, ring ‘X’. I rang ‘X’ and they said ring ‘Y’, ‘Y’ said ring ‘Z’ first. Eventually, I broke down in tears, sobbing. A man rang and I answered the questions (including really personal things like how heavy my periods are, how often I need the toilet at night, if I was continent etc) and he filled in my form for me. He reinstated my money immediately. I was told a copy of the form would be sent for me to sign but it never came. But my money continues.
In the four days it took for me to get help, I had a p45 and a letter saying my housing benefit had been stopped. If I had been in hospital or unwell and not able to do the chasing, my life would have completely fallen apart and I would have lost the roof over my head.
Two days after the phone call I had an anaphylaxis. Stress makes it more likely I will have one. Anaphylaxis is not a minor allergic reaction, it’s where you swell up, your throat closes and your blood pressure and pulse drop. This happens quickly (within three to five minutes) and I have to be ready to give myself an EpiPen, otherwise, I would die. I have had to have 78 EpiPens so far and I will shock again.
What needs to happen next
My needs are documented in so many different places – if only these records could be joined up so I don’t need to repeat myself. I’m eight years in now and I feel battle weary.
We need to look at this Work Capability Assessment and find a more holistic, compassionate way forward.
Becca runs a self-directed group for disabled young people moving into adult services in Ipswich called Progression Sessions. In this blog Becca describes her experience of independent living.
I have always strived to be as independent as possible, but it hasn’t always been straightforward. This became obvious when I finished sixth form and began to look for work. I had chosen not to go to university, because the idea of spending another 3 years listening to lectures and writing long essays had no appeal to me at all. Looking back, I was very naive in thinking it would be quick and easy.
For three years I had to visit the job centre every other week, relay to them what I had been doing to look for work, and was then sent off on my way.
Was I ever going to find a job?
Eventually, I was put on the Work Programme, which involved the same sort of treatment, with a few extra training courses to attend. I went to many interviews, but nothing ever came from them, and I was starting to get anxious. Was I ever going to find a job? What was wrong with me? How was I going to change? Then there was my worst fear: what if my disability was the problem?
To keep busy (and build up my CV), I volunteered at charity shops and a local media centre, where I wrote film reviews for their magazine. Meanwhile, my friends were at uni, seemingly having a great time partying and studying subjects they loved in new places outside of home. Of course I was immensely proud of them, but I couldn’t shake how isolated I felt in my little, unemployed bubble.
“It was such a relief to finally feel like I was being listened to and, most importantly, supported.”
In 2013 I volunteered for a local disability charity writing blog posts for their e-newsletter every week. The people I worked with were lovely, and I began to feel like I could be useful to society after all. One of my colleagues recognised that the Work Programme wasn’t helping me, and after all the paperwork was sorted out, I began receiving support from a local social enterprise. It was such a relief to finally feel like I was being listened to and, most importantly, supported.
I began a 12 month apprenticeship at the charity I had been volunteering at and undertook a National Vocational Qualification (NVQ) in business administration.
The need for better support
Through this experience, I recognised a need for better support for disabled people with independent living, particularly employment. I was also keen to know if anyone else felt as let down by career advisors as I did. Now that my friends were leaving university, it was clear I wasn’t alone in this feeling at all. It’s paramount that support services realise that the support needs of young disabled people can be very different to those of older social care users. However, if support services do not take this into account it can really affect our ability to live independently.
Nadia is 24 and lives in West Yorkshire. She’s a student and a campaigner with Scope for Change – Scope’s training programme for young disabled campaigners. Nadia employers her own personal assistants and last year, she won an Employer of the Year award.
She told us what this meant to her, what she looks for in her employees and how they support her to live a busy, independent life.
I’m profoundly deaf and I have cerebral palsy. To communicate, I use a communication aid called DynaVox. I can also sign British Sign Language but my body physically limits my signing. I’ve been employing personal assistants with the help of my family since I was eight years old. I started off with two or three and now manage a team of eight, as well as one volunteer and a communication support worker.
With support from my team, I can enjoy a busy life
I volunteer at a college and I like to meet friends, go to concerts, festivals, weekends away, travel and go for cocktails. I also need support to go to conferences, events and college. My team help me to be independent. For example, I’m planning a backpacking trip around Europe. They also help with everyday life including personal care, showers, writing and communicating, feeding and dressing me. All of these responsibilities are done respecting my autonomy.
I like to recruit personal assistants myself
I find staff through advertising on the internet. I also use Facebook groups, Twitter, Gumtree, the deaf community and students learning sign language.
I’m often pre-judged so I feel it’s better to meet people myself. I like to meet face to face and assess their skills. Employing my team myself, as opposed to through an agency, means I can plan my life how I want. If I want to socialise until 2am, I can arrange it. If I plan something that others may think is impossible, I have a fantastic team that will work with me to make it possible.
I look for people with similar interests, open personalities and honesty. I welcome diversity. I like people with skills in deaf awareness, signing and good receptive body language. I also need people who understand my thoughts and how I process language, someone with a good sense of humour, who can think quickly if problems arise. My team have supported me at the best times, but also at some of my worst times.
Working together with my team, we get to know each other well. I support my team emotionally, with advice and through training. I also plan nights out which my team are welcome to join and this builds relationships.
I’ve had moments I will always remember
In 2015 I visited London. I was going to the Houses of Parliament to give a speech with Trailblazers. Afterwards, we were at St Pancras station and there was a man playing the piano. He was an old Italian man and he sang a song called ‘That’s Amore’. My personal assistant, Sam, signed and I danced with my electric wheelchair. We were in the middle of the train station. I felt so happy and free.
Then we went to King’s Cross Station and I saw what looked like a big birdcage lit up with different colours. We went to have a look and saw that it was a swing. I told Sam to go on it and she said “No, you get on it!”. I felt safe so I agreed. She got me on the swing and held me while pushing. I felt excited and it was so different. Every day I’m sat in my wheelchair. I felt air on my legs while I was swinging and I laughed so much. I will always remember that experience.
I was so proud to win an award
This year I was nominated for an award – “Best individual employer who employs their own care and support staff”. The event organisers were Skills for Care. On the night of the awards I had a headache, felt so sick and I wanted to go to bed. My clinical support worker persuaded me to stay for the results. When they announced that I had won, I was surprised, happy and proud.
For World Voice Day we’re reposting this guest blog by Mandy, from Hereford. For the first 30 years of Mandy’s life, staff caring for her thought she had no awareness of the outside world. When someone finally realised how much she understood, they helped her get a communication device and Mandy was finally able make her voice heard.
I was born in Warwickshire in 1965. I have cerebral palsy and use a motorised wheelchair, as well as a communication device which I operate with the back of my hand.
I did not get this device until I was 30 years old. Until then, I had no way of communicating except with my eyes and facial expressions.
Decisions made for me
I went to boarding school and then to a residential college in Devon. This would not have been my first choice, but the decision was made by the teachers from the school. I would much rather have lived closer to my family, but I was not given this option.
Then I moved into a residential home in Essex, 150 miles from home. It was a big home with 30 people in it, and only five support workers.
I used to get very angry and frustrated, because no one ever asked me what I wanted.
The staff and other professionals did not realise how much I understood, so they did not spend any time with me and I was often not allowed to make my own decisions.
It left me wondering – why? I could see other people making their own decisions. Yet I could not, just because people didn’t take the time to get to know me and understand my needs and wishes.
Finally getting a voice
In the late 1980s I moved to Hereford to live in a shared house run by Scope. I had my own room, but shared the house with a number of other people whom I had not chosen to live with.
A support worker noticed how much I understood, and helped me get a communication device. I mastered its use quite quickly, and could communicate properly for what felt like the first time.
This is where I began to feel a turning point in my life. Imagine what it was like – having a voice after all those years.
I contacted social workers, and with the help of my family and key worker, I started to make my case for living in my own home.
I had to work very hard at making people realise that it would be possible – that I would be able to cope with a more independent lifestyle where I could be in charge of my own life.
I was very fortunate to get a fully accessible bungalow, and in August 2001, I moved into my own home. Now I really began to feel my confidence grow, and I gained more strength to make my own decisions and speak out. I built up a team of personal assistants by advertising, recruiting and interviewing. SIL supports me to arrange my finances as an employer and helps me sort out relief cover.
My support workers work a 24-hour shift, sleeping in my spare room overnight. This means I can organise my day however I choose without having to work around shift changeovers.
I recently completed a college course, and have also taken a creative writing class and written poetry. I have an active social life and often visit friends.
At this stage of my life, I feel more confident, decisive and stronger than I ever have before.
It’s hugely significant that, in this most-political of Budgets, the Government has set out its stall in protecting the value of these payments.
It’s also worth noting that despite the extensive coverage of the Government’s plans to reduce tax credits for certain groups, disabled people have been relatively well-protected in comparison. Many disabled employees earning lower annual salaries and who are managing health conditions alongside part-time work use tax credits to supplement their income.
Work allowances for disabled people are being maintained and the rate at which disability-specific tax credits are set has been protected relative to other groups. However, it’s important to note that disability tax credits will still be subject to steeper tapering alongside other types of credit.
This serves to underline the importance of supporting flexible working for disabled people – both in helping to manage work alongside health conditions and ultimately as a way of maintaining disabled people’s engagement with the labour market.
As such, the move to keep DLA and PIP outside of taxable income is more important and welcome than ever; if extra costs payments had been taxed, this would have resulted in a 40% drop in the annual income for a disabled person on the higher rate of PIP at the minimum wage.
And whilst many of the changes will still have significant implications for disabled workers, there is at least a real recognition that there is something exceptional about support for disabled workers – and that protecting this support is important.
ESA has a vital role to play in supporting disabled people make their way into employment. Reducing its value will only make life harder for disabled people who face additional challenges to get back into work.
Disabled people are pushing hard to find jobs and to get on at work, but they continue to face huge barriers. Unlike the other back-to-work programmes that are currently available, the support that disabled people receive needs to be more personalised and tailored to their needs.
On Wednesday, the Chancellor promised further support measures for employment – and we’ll be keeping a close eye on what is being proposed.
Whilst there was confirmation that the Government would be committing to a further investment in the NHS, it remains extremely concerning that there was no mention of social care in the Chancellor’s statement.
A third of all social care users are disabled people, and access to the care system is critical in supporting many people to live independently. But we know that the system is under increasing demographic and financial pressure, and that the rationing of care is already having serious implications in supporting disabled people to get up, washed, dressed and out the house each day.
It’s therefore essential that the commitment to investing in the healthcare system is matched by a sustainable future funding solution for the care system in the Comprehensive Spending Review later this year.
In addition, there needs to be greater clarity on what the integration of health and social care and the implementation of the Better Care Fund will look like for disabled people.
On Wednesday the Chancellor will deliver his Emergency Budget before the House of Commons, presenting him with the opportunity to set the tone and underline the priorities for the Conservative Government in the new Parliament.
The Chancellor is expected to detail how the pledges set out in the Conservative manifesto will be brought into legislation in the coming months.
Scope will be following the announcements closely – so what can we expect to hear?
Meeting the extra costs of disability
Much of the pre-Budget analysis has focused on the Conservative plans to find £12bn of savings in welfare spending – with speculation that this could mean cutting or taxing disability benefits.
Life costs more if you are disabled. The extra costs faced by disabled people can have a significant impact on the living standards of disabled people, who spend an average of £550 per month on costs related to their disability. Disability Living Allowance (DLA) and Personal Independence Payment (PIP) are the payments that are designed to contribute towards these extra costs.
The Government has repeatedly stressed that payments designed to tackle the extra costs of disability will continue to be protected in the new Parliament. The Chancellor stated it at Conservative Conference last year, the Prime Minister promised to ‘safeguard and enhance’ the value of PIP in the election campaign, and the Conservative manifesto confirmed it once again.
The extra costs of disability act as a taxation on disabled people and Scope wants to not only see the value of the payments protected, but ultimately enhanced so that the value is triple-locked in the same way that pensions are – rising by whichever is the higher of inflation, average earnings or a minimum of 2.5%.
Scope has worked extensively to highlight this issue over the last two years and we’ll be keeping a very close eye on what protection is afforded to extra costs payments on Wednesday.
However, this commitment will be undermined if BBC News reports last Thursday on a leaked Whitehall memo about Government plans to reduce the value of Employment Support Allowance (ESA) are accurate.
ESA provides the financial support that allows many disabled people to move into the workplace. With other government schemes such as the Work Programme failing to offer the personalised and tailored support that many disabled people need to get into work, reducing their incomes won’t incentivise them to find a job. Instead, it will make life more difficult at a time when disabled people are already struggling to make ends meet.
The proposed changes to ESA must also be considered in the context of the news earlier in the year that the financial support provided through the Access to Work scheme will also be subject to capping.
Scope is strongly urging the Government not to cut access to this financial support but to instead look at what can be done to reform and improve its back to work schemes and make increased use of city and regional growth strategies – such as the newly-announced Northern Powerhouse – to better connect disabled people to employment opportunities.
Scope facilitated the Extra Costs Commission, a year-long independent inquiry into the extra costs of disability, with the final report published just last month.
One of the report’s key recommendations is the need to develop improved online access for disabled people. Twenty seven cent of disabled people have never used the internet, compared to eleven percent of non-disabled people. This prevents disabled people accessing appropriate financial products and getting some of the best deals on goods and services.
On Wednesday we’ll be listening out for any further announcements about the Government’s plans to address this critical issue.
Social care, integration and independent living
It’s expected that the Chancellor will use the Budget to highlight the progress of the Better Care Fund (BCF), and perhaps extend it. Scope welcomes the Fund’s potential to improve the integration of health and social care services and promote independent living for disabled people.
However, the scheme must work better for disabled people going forward. Only 14 of 91 the current local BCF Plans include schemes specifically aimed at disabled adults. This represents a missed opportunity, which any BCF extension and longer term vision on integration must address.