When I look at my autistic brother, I’m scared by what he might lose because of Brexit

I write this from a train, on the way to visit my younger brother. When I get to Wales, where he lives in a care home, he will be waiting at the station with his care worker, who, having driven him there in the motability car, will have already have put in a full morning’s work. He or she (they work in shift patterns) will have helped my brother get up, washed and dressed; helped him use the toilet; made him his breakfast; given him his medication, and provided him with a “key schedule” of the day’s activities. This helps my brother, whose severe autism means routine is paramount, cope with the unpredictability of day-to-day life.

‘These workers are labelled low-skilled, but they are anything but: it takes empathy, resilience, and emotional intelligence to be a care worker’

You’ll understand, then, that the news that Brexit could mean a UK shortage of nearly 400,000 care workers by 2026 if we leave the EU without a deal on free movement has personal resonance for me. Perhaps it does for you, too: perhaps you have an elderly parent, a disabled relative, or a child who has been released from hospital, and you can’t manage on your own. So an industry reliant on the free movement of EU labour steps in, an industry already suffering from a shortage of 90,000 staff – a vacancy rate of 6.6 per cent – as a result of years of austerity.

Is this crisis what those politicians who spoke of wanting to control our borders were hoping for? As they continue to age, they might find themselves needing care, too. Will it matter to them then in which accent they are greeted and comforted?

We have an ageing population and wages for carers remain shockingly low, with many not being paid for the time spent travelling between visits. In circumstances like these, the question is: who cares? Who will care? This isn’t a looming crisis – it’s already one.

Care workers have been a part of my life

Care workers have been a part of my life since childhood. Growing up with my brother means my family has been helped by a parade of heroes and heroines over the decades. Though largely non-verbal, my brother still remembers them and will say their names, smiling.

Read more in Opinion

Source: When I look at my autistic brother, I’m scared by what he might lose because of Brexit

Disabled people and care being provided by Personal Assistants

Received through the ROFA (Reclaiming Our Future Alliance) network:

A worker at Inclusion London has mentioned that some Disabled people are being asked to replace funding for Personal Assistants with volunteers to undertake their personal care by some Local Authorities.   Inclusion London would be grateful for your thoughts and  any examples of expectations from social workers to use volunteers to make up for cuts in your support package. Email Henrietta.Doyle@inclusionlondon.org.uk
I am aghast that this could be on the agenda of any authority.
This is extremely worrying and hopefully is not being contemplated within many Local Authorities. That being said, could you advise your thoughts to  Henrietta.Doyle@inclusionlondon.org.uk.
Hopefully this worrying situation can be stopped.
My own view on this is what messages are these local authorities, who are in the process of asking for volunteers to replace paid carers, sending to the paid care workers. For the huge responsibility that these care workers undertake within their role for the low remuneration they receive, this is deplorable. No paid care worker should be only on the Minimum Living Wage, but should be, at least on the Living Wage and even above.
To be a care worker requires them to be committed to the person they are caring for, be responsive to the needs and requests from the cared for person and conduct themselves respecting the cared for persons dignity, privacy and the confidentiality with regards to the information they will be aware of about the cared for person and also their family.
They are required to attend at the times required according to the respective care packages and inform the cared for person when they are unable to do so with sufficient time for a replacement care worker to cover the caring shift to be found. Where the cared for person is deemed to be vulnerable and therefore be at risk of abuse, safeguarding is therefore an area of concern and a DBS (Disclosure and Barring Service) check is required.
You cannot say that one person requiring care is the same as the next person requiring care, as we are all individuals and therefore have our own views. This is especially so for persons with learning disabilities and those with Autism. In these instances it takes considerable time to understand each individual and their routines, for to not take this into account could cause the cared for persons to have an adverse reaction, which if a full understanding is not known could and most likely will create situations where harm could occur to the carer and the individual concerned. The carer needs to understand that they are technically a guest in the cared for persons home and as such they should act accordingly.
While a volunteer could and should be capable of all of the above, will all volunteers respect the commitment that is required to undertake care. After all they will be undertaking this on a voluntary basis so will they really commit to engaging with regards to timings. Then what will occur if they cannot attend , say to illness, will the cared for person have a bank of volunteers they can call upon.
These Local Authorities are only looking at their own interests. If they are so committed to using volunteers, why do they not have a volunteer Chief Executive and then there will be a multitude of funds saved.
That you could say is flippant, but where is the difference with regards with paid carers.
Any local authority who undertakes using volunteers could be open to a challenge on ‘Duty of Care’.

Investigating complaints about health and social care has led to significant benefits | Care Industry News

Adopting an integrated approach to investigating complaints about health and social care has led to significant benefits, according to a new report by the Local

Source: Investigating complaints about health and social care has led to significant benefits | Care Industry News

The right to choose your own care is the latest casualty of council cuts | Frances Ryan | Society | The Guardian

It is true that social care support is in decline due to the Governments austerity cuts to Local Authorities, thus requiring Local Authorities to make savings. Some councils are reducing care packages in part to achieve these savings, but the Care Act provisions should ensure that all local authorities met all unmet needs as identified through an assessment of needs and the creation of a support plan.

Where a council is not undertaking to cover unmet needs people requiring care should be using the look again process, followed by making formal complaints and if necessary instructing solicitors to commence a Judicial Review, for which legal aid, if the criteria is met, is still available.

Where persons employ their own Personal Care Assistants through becoming an Individual Employer and funded by having a Personal Budget which is accommodated by receiving direct payments. By being an Individual Employer you will have to abide by all the various employment legislation and you will require to purchase your own liability cover. There are specialised insurance providers who cater for the care sector and as well as providing liability insurance, they can also provide 24 hour information and support on employment law, cover costs of tribunals, provide draft documentation for the various legal and employment aspects and others, so in effect you are purchasing your own HR department.

The costs of these packages should be part of the assessment of needs and be included in the support plan, as should any costs relating to recruitment, managing supervision, producing the support plan, if this is achieved out with of the local authority then also the costs of this. If the person requiring care does not have the ability conduct any of this by themselves or does not have the capacity and do not have any family members who can do this on their behalf, then they will be entitled to receive the services of an independent advocate and again any costs relating to this will be covered by the respective local authority.

Unfortunately all of this will require pressures on time and perseverance, which can be extremely stressful.


Personal budgets were designed to give disabled people more independence. But the social care funding crisis is leaving families in the lurch

Source: The right to choose your own care is the latest casualty of council cuts | Frances Ryan | Society | The Guardian

One fifth of workers paid less than voluntary living wage, says study : AOL.

I would love to pay my daughters Personal Care Assistants the National Living Wage of £8.25 per hour, but as the funding for this comes from Direct Payments from our Local Authority I have not been allowed to do so. Local Authorities have reducing budgets, at a time when costs are increasing and more people are dependent on care, due to austerity cuts from the current Tory Government.

Care in the UK is not being allowed to be sufficiently funded and will, if not already, lead to care being restricted due to insufficient funding to pay costs and thus making care agencies not being financially viable to stay in the market. The result being that the quality, as well as quantity will be severely reduced, creating within a short period of time more pressures on the NHS due to deteriorating health of those requiring care and in many cases of family cares trying to continue in this reducing care market.

It is great that the Care Act is now in force, which is creating more rights for carers, but the funding is not available to ensure these rights are able to be fulfilled. This will in time create another major care crisis, which will be at least equal, but more than likely even greater than Winterborne and Mid Staffs

I for one…don’t want to end up in an old folks home, this must be happening up and down the country.

This is the state of care in the UK and it is not just care homes as there is supported living and care in your own home. Funding from Social Services is way too low and quality of care is suffering.

Finding a suitable personal assistant if you’re disabled

Original post from Disabled Go News



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.


Wanted: A Very Personal Assistant is part of the BBC Three Defying The Label season about disabled people. Catch up on the iPlayer attp://www.bbc.co.uk/programmes/b063j9hx

Roisin Norris

Hi I’m Roisin Norris, Digital Marketing Executive at DisabledGo and I will be uploading blogs and news for you all to read.

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