In just a few weeks, many of the assumptions we’ve taken for granted for generations have been totally transformed.

While this is undoubtably a surreal and scary time, we’ve seen how quickly systems can be transformed when the right approach is taken and when adequate resources are in place. Adaptations that disabled people have been requesting for a very long time, like working from home, have been introduced overnight.

In some ways this is great because it demonstrates that rapid radical change is possible. But, sadly, disabled people’s perspectives are often still overlooked. Every day I’m coming across new and complex issues which require hours and hours of researching, emailing and getting advice. This is often exacerbated by slow or no replies! Here’s the current list of currently unresolved issues:

• Access to Work support claims and renewal – several calls, emails and a letter to my MP – No response to
• Sainsbury’s Online food deliveries – over 14 attempts to contact them by phone and tweets. I have now sent a letter of complaint
• Access to Personal Protective Equipment for me and my employees – over 12 hours of phone calls, emails and research. I have privately purchased some resources and am still waiting for the District Nursing team to contact me
• Equal access to healthcare and treatment – I’ve signed this letter to NHS England expressing concern about access to equal treatment for Disabled People

Today I uncovered another one to add to the list:

• Direct Payments, Personal Assistants and Furlough

To help you understand this new issue I’ll explain a few things:

1) I need 24 hour support. This is provided by a team of Personal Assistants (PAs) who I employ and manage directly. It’s is funded by a mix Direct Payments from my local Council and Access to Work.

2) On Monday 16th March we were all instructed to practice social distancing and to have contact with others only when it’s essential. People with certain pre-existing conditions were also advised to self-isolate for at least 12 weeks. As someone who’s more at risk and needs a lot of close physical support I took the decision to reduce the number of people providing my care.

3) There’s no change to the way my 24 hour support is funded, but rather than a team of four people sharing these shifts, for my safety I needed to reduce it to just two, with my friend Leftwing Idiot providing additional back-up where needed.

4) To best comply with government advice, I chose the two of my four PAs who’ve been working the most hours and were best placed to support me at this time. But this means the other two who usually have shifts are unable to work, solely because of COVID-19.

5) When the Chancellor announced that the Coronavirus Job Retention Scheme (also known as Furlough) would cover 80% of the wages of employees who aren’t able to work due to COVID-19, I breathed a sigh of relief. I felt hopeful this would help me balance my need to be safe, with my duty of care to my employees.

6) Today I looked at how the Furlough process works with the person who helps administer my Direct Payment payroll. He came across a clause in the government guidance which could be an issue:

“Where employers receive public funding for staff costs, and that funding is continuing, we expect employers to use that money to continue to pay staff in the usual fashion – and correspondingly not furlough them. This also applies to non-public sector employers who receive public funding for staff costs.”

Do Social Care ‘Direct Payments’ count as ‘public funding’ and if so, what is a disabled employer like me supposed to do when patterns of working have to be changed to manage safely in a pandemic?

7) The guidance also says:

“You can claim for furloughed employees who are shielding in line with public health guidance (or need to stay home with someone who is shielding) if they are unable to work from home and you would otherwise have to make them redundant.”

If this is the case for employees who need to shield, presumably it should also be applicable for employers who need to ‘shield’ and consequently limit the number of their employees.

The Job Retention scheme mentions other types of home-based employees, including ‘Nannies’ but there’s no mention of the half a million homecare workers and their employers. My suspicion is that the omission of Disability from this guidance has a lot to do with who was in the room (or on the Zoom call) when this scheme was being put together. If disabled people are absent from the decision-making process, our requirements will not be reflected in the decisions that get made.

I totally understand that we’re all making this up as we go, and that the situation is unprecedented. But I keep finding that my experiences and requirements as a disabled person haven’t been thought about at all, and this is causing a lot of extra stress. Having to repeatedly explain my requirements to service providers without any reply is particularly frustrating.

It would be less of an issue if there were a single source of information that disabled people could go to, to raise these issues and seek advice. But there isn’t, and I’m suddenly finding myself in a situation where I need to research and get to grips with the intricacies of a broad range of specialties, from employment law to health care rights.

To ensure the needs of those most at risk are reflected in all emerging policies, there’s an urgent need to involve disabled people with a range of lived and professional expertise in all strategic decision-making. What we need is an independent, specialist task force made up of disabled and non-disabled people with expertise in areas such as law, health, education, social care, disability culture and rights, who can respond to the bombardment of new barriers facing disabled people.

Right now, I desperately want someone I can email about issues like these and be confident that they have sufficient expertise to offer reliable advice. Without this type of provision, it’s easy to feel very alone – not because of self-isolation but by being invisible in this pandemic.

Not predicting these unexpected issues is understandable, but ignoring disabled people pointing them out is unforgivable.