How U.K. Law Fails to Protect Disabled People Hiring Caregivers


I live in the U.K. and currently employ four carers privately with the money I receive from my Personal Health Budget, which is paid by my council. I was one of the “test cases” for these budgets, to see if giving people with a disability more control over their care and saving the council the pricey care agency fees really was the perfect solution it appeared to be. For me, the budget allowed me to hire the people I wanted and to set my own hours, to allow me to commute into London to study law at university. For three years, this worked really well. But all good things must come to an end, which is exactly what happened when one of my carers raised a grievance, subjected me to emotional abuse, and threatened to walk out if her demands were not met.

I have employers’ insurance, who advised me on how to deal with her grievance and meet all my obligations as an employer. They said the law currently didn’t cover situations like this, so I was forced to have her keep working for me, regardless of my fear and anxiety. They told me that despite feeling completely unsafe with the carer as a result of her threat to walk out  – which for me could lead to death – her threat wasn’t “bad enough” to be gross misconduct, and as she hadn’t actually walked out yet, there were no grounds to dismiss her. I believe no level of threat or discomfort should be tolerated, and if the law doesn’t cover this, then the law needs to change.

I had to handle her grievance by myself, as the council and payroll services I use told me they were unable to attend any meeting other than to minute-take. I have no experience chairing a formal meeting or dealing with employment issues, as I am only 22 and have never had a permanent job. Yet I was expected to do everything to the letter of employment law, and any mistake I made could open me up to a lawsuit which my insurance may or may not cover. This was a terrifying prospect for me, and I began to think about all the other people who have these budgets and don’t have a law degree or a supportive family behind them.

How can we be held to the same employment standards as a company when we don’t have their resources, such as a HR department, nor do we have any of the workplace remedies? When you work 1 on 1 with your carer, there isn’t an option to transfer them to another department, or have them work with someone else they get along with. Companies and most employers do not need their employees to do personal and life-dependent care for them, which requires an excellent working relationship.

The only option I had was to keep receiving care from a person I no longer trusted or felt comfortable with. This situation is not unique to me, and is something disabled people are far too often made to go through. But until you experience it, you have no idea how it really feels — and once you have, you want to make sure it never happens again.

When my carer returned to work, she would not make any eye contact with me, and would not speak to me other than “yes” or “no” for 12 hours, 3 days and 2 nights a week. Take a moment to think about being cared for in that toxic atmosphere. It took a huge toll on my physical and mental health. Again, I had to handle this on my own, as I was the employer and this was a workplace issue. I was almost too scared to talk to her about my discomfort, but I knew if I didn’t, my situation wouldn’t improve and my health would continue to decline. The informal talk did not go well, and I was advised to hold another formal meeting by myself. My carer ended up resigning the day before the meeting, so thankfully I did not have to go through with it.

However, the problem does not stop there. There needs to be much better support for people with these types of budgets. The councils cannot simply make someone an employer, save lots of money, and then wash their hands of any responsibility. There needs to be a restructure to the budgets to provide adequate support for the disabled employer who relies on personal and life-dependent care. I believe it is unfair to ask that we face complex and often hostile issues without adequate support from Health or Social Care. We need recognition that we rely on our carers for everything, so when that relationship breaks down, it is extremely serious. I accept we have responsibilities as employers and we can’t ignore them, but we need more support and recognition in the eyes of the law.

I’m trying to start a campaign to get better support for disabled employers. I’m looking for people to share their experiences of problems with carers hired through a budget of any kind, and how you went about dealing with it. I want to know if you had support, or if you didn’t, what support you would have found helpful. You will be kept anonymous if you prefer. Please contact me to participate.

This piece was originally published on Disability United.

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