What should I do if all my PAs suddenly had to self-isolate?

Featured article - 22 March 2020
By Ossie Stuart, SCIE trustee & equality and diversity consultant

During these anxious times, of all the questions I have, as a user of a direct payment to employ my own personal assistants (PA), this is the one that has not been answered. Of course, there is the ever-present fear of contracting Coronavirus virus, that causes the disease - Covid-19. Yet, people like myself or those who pay for their own care also have to worry about what to do if our key workers, our PAs, were to contract it, too. Even with suspected symptoms PAs they must isolate themselves for at least seven days, as advised by Public Health England. An event that would immediately deprive us of the support we need.

Let's think about that for a moment, shall we? The main reason why people choose to employ their own PA is to maintain their own independence and, with it, their dignity. I have a long memory of being humiliated, bullied and abused in a care home setting as a teenager. As a consequence, for many this is often the only way to meet their care needs. For example, people may work and have unpredictable schedules to keep, as I do.

Or, they may have complex needs that require specific assistance that care agencies are often unable to provide except at considerable expense. These can range from people with learning disabilities to people living with dementia. The PAs who work for us are highly trained and extremely flexible. They could be, for example, supporting someone with very complex communication needs. Or have to support the unpredictable schedules that people like myself must follow simply to earn a living despite this coronavirus emergency.

To lose just one of these skilled workers would be devastating. To lose them all would be catastrophic. Irreplaceable at such short notice, they cannot be substituted for "informal support" nor replaced by untrained voluntary support that might be found at short notice. It is a fact that the government, for all its helpful advice, appears to have forgotten or, worse, not fully understood.

There is no one single source of good advice that a person who employs their own assistance, with or without a direct payment can go. The advice that does exist is, literally, all over the place. An intensive search today found 12 websites, each of which added to the jigsaw, but none answered my key question.

Public Health England is the go-to place for all information regarding the coronavirus and COVID-19. The information there is excellent but very dense and, therefore, difficult to access. It would appear that the information is designed for health professionals rather than the general public. This is unfortunate because the majority of the social care guidance organisations, such as Skills for Care and even SCIE will point you to this information as well. For health professionals these are the ideal websites to go to obtain the latest advice. For us, people who employ our own PAs, the best advice is to find the guidance on our local authority websites. In my case this would be Camden Council.

Called, “Camden Care Choices, information advice, Coronavirus (Covid-19) latest guidance”, although very difficult to find, Camden Social Services website provides a whole host of very helpful advice. If you live in Camden it is essential viewing. Even if you do not, it is still worth a visit. At the very least you will get an idea of what you should expect from your own local social care service.

Their reply is to contact Adult Social Care. By then it would be too late. What I really need is help to build resilience and redundancy into my system now. I can do this by employing more people for more hours to reduce the risk that I cannot maintain the minimum level of support I need. Yes, this will come at a cost. Yet, if the Government wants local authorities to remember those who are directing their own care, too, as it has to clearly stated, then this is the only way to ensure we can also continue to live in the community and contribute at this time for crisis.