When the relationship between a disabled person and their assistant works well, it can be fantastic. When it doesn’t, it can be disastrous, says Rupy Kaur.
I first became an employer at 15 during my GCSEs – an additional stress most young people don’t have to think about. I needed to take on a personal assistant (PA) to help me with daily care tasks like dressing, going to the toilet, preparing meals, and also doing admin. I have cerebral palsy, a neurological condition that affects my movement.
Under a new widely welcomed scheme that started in 2001, the council gave me money to recruit my own assistants – they weren’t allocated to me by the local council. Although these direct payments gave me the choice and power to hire and fire, at that age I had no idea how to recruit a good PA.
I didn’t know what to ask them at interview stage, how to write a contract or legally protect myself, let alone how to pay them. But I now had that responsibility.
The council helped me find a few contenders but, due to my lack of experience, the only question I really wanted an answer to at the interview was whether they would feel comfortable wiping my bum. When they answered yes, I thought it was enough evidence to show me they were suitable for the job.
During my time as an employer, I have worked with many PAs – on average 10 a year. There have been some ups and downs. A few PAs caused me problems. They were often late, ignored my needs, talked about how drunk they’d been over the weekend and about intimate details from their personal lives.
As it was the only way that my personal care needs could be met, I went along with it. They were the people I was relying on when I was at my most vulnerable. They were my hands and legs, and it felt like they were the ones who were in charge. I certainly did not feel like an employer.
Incidents included writing their own cheques for payment and exaggerating the hours they had worked. Cheques would also be signed on my behalf. I felt I had no support to manage the situation and was relieved when they left of their own accord.
I’ve had PAs who have stolen from me, played games on their phones when they should have been writing my lecture notes, let me down at the last minute… the list goes on.
Two insisted on working in a pair, which meant my budget was eaten up more quickly than it should have been, so I didn’t have enough funding to cover extra shifts.
But I look back now and realise that these negative experiences have made me more resilient and a better employer.
I now have an accountant that manages payroll, have sound legal contracts, and I am ruthless when I am hiring. I have compiled a 15-page handbook for my new employees to read – not because I’m fussy, but because I have complex needs that would take months to explain. It’s just easier this way.
I have managed to recruit PAs over the years who match my personality, understand my needs and who have become friends while still understanding the boundaries.
For me, a PA is what it says on the tin. I need assistance in order to live my life the way that I want to. I don’t need a carer as I don’t need caring for. I am an autonomous person with the capacity to make my own decisions, and I need somebody who is able to assist me to achieve my goals.
Personal assistants speak out about their isolation as Community Care finds postcode lottery of support and training opportunities
Published in partnership with Unison
Councils are offering inadequate support for personal assistants despite the critical role they have to play in delivering personalised care under the Care Act, according to research by Community Care.
Personal assistants and their employers face isolation as 86% of councils don’t facilitate support networks for personal assistants and 65% don’t offer this provision to employers.
Training is a ‘postcode lottery’ with some councils only offering access to e-learning or free safeguarding sessions. One in 10 councils offering training do not meet the cost.
Opportunities for career development are also limited, with 82% of councils not promoting apprenticeships to personal assistants.
Nearly two thirds of councils do not provide a register of accredited personal assistants that employers can access when looking to recruit.
The 2013 guidance, which was developed by Skills for Care, Learn to Care and the Association of Directors of Adult Social Services (ADASS), includes nine minimum standards and states that, due to the growing number of people receiving personal budgets and direct payments, councils need to be offering support of the ‘highest possible standard’ to employers and their personal assistants.
But personal assistants like Heather, who supports an elderly lady with mental health needs, continue to feel isolated. “I don’t know of any local networks and I wouldn’t know where to look for email addresses I could use to make contact with people myself,” she told Community Care.
“I just feel like there is no support out there. Who do I let off steam to? If I witness abuse or neglect, who do I speak to? If you work for an agency you will always have your line manager, but when you are employed through direct payments you have no point of contact. I have no one to turn to.”
‘I’ve got no support, no manager, and no access to supervision’
Sean, a personal assistant to a young man with complex health needs, has struggled to access support ever since his client’s family switched from an agency to a personal health budget, which is jointly funded by the NHS and the local authority.
“I’ve got no support, no manager, and no access to supervision,” he said. “I can talk to the NHS trainer but although he can try and give advice, the only concerns he can really raise are those related to the health needs of my client.”
Sean is also unaware of any local support groups for personal assistants. “The only place I can think of would be the group I take my employer to and that’s not the best place to do it – everyone’s clients are there to enjoy themselves, not talk about the issues we have.”
A survey undertaken by Skills for Care in 2014 also found peer support to be lacking, but said it was recognised by councils as a ‘desirable intervention’. This was, however, the third consecutive year in which peer support was identified as a gap by the organisation’s research.
Responding to Community Care’s findings, Georgia Turner, programme lead for employer engagement at Skills for Care, said: “That support isn’t more widely embedded is indicative of the challenges local authorities need to work to overcome in engaging a group who often don’t comply with our traditional idea of what a ‘workforce’ looks like.”
Matt Bowsher, joint chair of the Association of Directors of Adult Social Services’ personalisation network, added: “There is something very distinct about the personal assistant role itself and where there is a willingness on all parts to do so, there’s no reason why personal assistants could not be put in contact with one another and offer support.
“The technical means for people to communicate with each other have never been so great, so it’s about how those networks are built, informally as well as formally. Not all of this is about what councils do, it’s about how councils could act as a catalyst for how these networks could be made.”
Our investigation also found a significant variation in the learning and development opportunities available to personal assistants (standard 5 of the advice note).
While 77% of councils provided access to in-house training, the quality ranged from e-learning modules or basic induction sessions to a willingness to provide ‘any relevant training’ to the personal assistant’s role. Other councils only offered free safeguarding training and one said it would open training up to personal assistants “only if there were spaces available”.
Funding was also an issue. Of the councils that made in-house training available to personal assistants, 1 in 10 did not meet the cost. Some councils said they costed monies for training into the service user’s personal budget allocation, but would not meet the associated costs such as shift cover for the personal assistant while they attended training (known as backfilling) – the individual employer would have to fund this. Others expected personal assistants to foot the bill.
Two councils said they considered it to be the responsibility of the individual employer and the personal assistant to source and fund learning and development opportunities.
Sean says the external training he has received since his client’s family switched to the personal health budget has not been as good as when he was employed by an agency.
“When I worked under the agency I had access to a five day training package every year but now I can’t remember the last time I had that. For manual handling we were given a one hour online course, before it would have been at least a day of face to face training.”
Skills for Care’s 2014 survey recommended that local authorities support individual employers to access the Workforce Development Fund, which is distributed by the organisation on behalf of the Department of Health. The fund can be used to access additional learning and development opportunities for individual employers and their personal assistants.
Our investigation found nearly half of councils do not support individual employers to access the funding. Of those that did, some only provided information via email, while others assisted individual employers to complete the full application process.
Personal assistants were also missing out on apprenticeship opportunities (standard 3), with 82% of councils not promoting them.
‘My employer is not able to push these issues’
Heather is keen to pursue further learning and development opportunities on top of her existing NVQ level 2 in health and social care. Although she’s done the research, it’s now down to her employer to agree to her attending and to secure the funding, which is a lot to ask of someone who already has complex needs, she points out.
“I rely on my employer to push these issues but because of her needs she’s not able to that, so it means I just go to a lady four days a week and I’m not pursuing my career.”
ADASS’ Bowsher agrees training for personal assistants is challenging. “The very difficult balance that needs to be struck here is how you create the same opportunities for people where you don’t have the same economies of scale that some of the registered providers do – volumes of workforce, training budgets, ability to fund backfilling cover.
“Wherever possible, training and development needs to take place on the job and it’s very challenging to be able to take a large chunk of time where you as the individual employer can do without your personal assistant.”
He added: “We are going to have to very creative in the way that’s done, we don’t have an infinite sea of resources here that can be provided. And I don’t think anybody wants to be responsible for creating a two tier workforce. Both groups should be equally as attractive to a potential carer.”
Our findings also show that nearly two thirds of councils do not keep a register of accredited personal assistants that employers can access when looking to recruit. Of the councils that did, some held an in-house register, while others commissioned an external organisation to manage it.
The 2014 Skills for Care survey reported a 15% increase in the number of councils providing a register (from 41% in 2012 to 56% in 2014), but said encouraging councils to use one still remained a persistent challenge. The figures obtained by Community Care suggest there has since been a reduction in the number of councils providing this service.
Skills for Care’s Turner said: “We must remember that local authorities are working to ensure their actions keep employers and personal assistants safe, without removing the choice and control that is central to personalisation. Local authorities must focus their efforts on enabling informed decision making and effective risk management, rather than imposing arbitrary controls.”
When asked if personal assistant registers are a service councils would be likely to cut as a result of funding pressures, Skills for Care declined to comment further.
Matthew Egan, professional officer at Unison, said the findings were ‘especially worrying’ given the context of funding cuts that are likely to be exacerbated under the new government.
“If the personalisation agenda is being really pushed then it is incredibly reckless to do it unless you have the adequate levels of training, support and funding in place, which the findings show aren’t currently there. It’s not just bad for the worker, it’s bad for the individual employer – they are both being let down by the lack of support.
“It’s also a postcode lottery – you could be lucky enough to be in a local authority area where the council provides a good level of support and training but a lot of other people are in ones where they are just on their own.”
A spokesperson for the Department of Health said: “This data doesn’t show the whole picture – our survey of local authorities over the last three years show most do have support available to personal assistants and this situation is improving year on year.
“We know there is some variation across the country so in 2013 we published advice setting out minimum standards and we also want to make sure we facilitate the sharing of best practice in our work with partners and stakeholders.”
ADASS’ Bowsher added: “Clearly some time has passed since the Skills for Care and Department of Health guidance was published and we now have data that says very clearly that we need to look at this again and ask ourselves the question what can be done to support individual employers and what can be done to support personal assistants.
“We don’t want people feeling isolated like they don’t have any career development opportunities and there is no one to support them, whether they are an employer or a personal assistant.”
He added: “All of these comments are made in the context of significant and longstanding financial challenges, but I do think the cuts themselves should not be used as an excuse to stop us exploring every opportunity to encourage personal choice and control.”