Transcript: What if my personal assistants need to self-isolate?

Podcast Episode: What if my personal assistants need to self-isolate?

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
OS - Ossie Stuart

Dr Ossie Stuart is an academic, researcher and an independent equalities consultant who has written key works on race, disability and social care. He is a wheelchair user and firmly believes that we are all entitled to fully participate in society and have control over our own destinies: these two ideas have heavily influenced everything he has done and will do in his working life. Ossie receives a direct payment and uses it to employ personal assistants. Michelle from Iriss had a conversation with him about how he’s managing in the current crisis: he offers some helpful advice and has also created a blog to share his views. Blog: Social care: a user’s voice

MD Thanks so much for taking the time out to speak to me.

OS No problem.

MD How are things going for you anyway?

OS At the moment it’s fairly smooth. I say that because PA’s are obviously my main concern and the fact that they can sustain what they’re doing, they’ve got to earn a living other than work for me because they work for me part time, also they’ve got to follow the government rules and they’ve got their own world to think about and also the worries about coronavirus.

MD Yeah, it’s such a complex and difficult situation for everybody at the moment.

OS It is.

MD Ossie, could you just tell me a bit about yourself, your personal situation and I suppose any work that you’re involved in around the social services as well?

OS Well I’ll start with myself, I’m a, obviously, a disabled person, wheelchair user; had a spinal injury many years ago so I really need support to do what I do but also I’m an academic, a writer, a consultant: I provide advice and support to organisations to think through equality matters, specifically around disability.

MD Okay.

OS And I run my own sort of programming network.

MD You’re also a user of direct payment and currently employing personal assistants: do you actually have personal assistants at the moment?

OS I do, I have three well I’ve now got actually two but I normally have three. One of them is shielding at the moment cos she is an older person and she cannot expose herself at all to this: so we agreed for a furlough situation for her. So, she is shielding for the next two or three months but the other two work for me. I receive direct payments, which I use to pay for my personal assistants unfortunately it was devised in a time of austerity where we didn’t think very much about the coronavirus or any crisis like this, it’s designed for normal life and our normal way of living and so obviously now with the changes it is, let’s just say: I would say it’s inadequate to deal with the flexibility I need for the situation we’re in.

MD And what are those limitations then that you’ve experienced?

OS Limitations are: recruiting more people, having more hours so I can build up resilience into my system also it’s simply about having reserves for emergencies I can’t anticipate because things change so quickly so I don’t know what’s happening and also for other needs I didn’t have before. I’m using a lot more online shopping which is expensive.

MD It is expensive, isn’t it? I think people are having to use more expensive means to get their shops.

OS Yeah, shopping and even having my place cleaned can only be done by my PA’s now because I can’t afford to have people coming in and out so it’s more hours for them to do that. I want to reward them properly for what they’re doing.

MD And you’ve also been blogging I know; you’ve set up a blog and you were blogging about your fears of your PA’s having to self-isolate and luckily enough you still have two of them at the moment but that situation could potentially change.

OS It already has, it changed once already since I wrote that blog because as I said, I’ve got three PA’s: one of them had to self-isolate because she is an older person and has an underlying condition herself and one of them was exposed, Adolina, she was exposed to somebody who has coronavirus so, she had to self-isolate for two weeks. That meant I was reliant on just one PA for two weeks but she stepped up for that but it was a big ask and a lot of work for her and I felt very concerned for her wellbeing for doing that so, it is a concern because I tried to enquire, what should I do? All of them have to do that. There’s no real answer to that. Social services will step in dot, dot, dot ? whatever that means.

MD Sure. So, you haven’t had any clarity around what would happen for example if your third PA was to go off on leave?

OS No, not at all. I’ve been pushing for clarity, pushing for a plan, you know what to do: and I’m being told, “oh, look for informal carers. We might step in, have you got friends?” those are the sort of solutions I’ve been hearing.

MD So, you have received some sort of formal guidance as such?

OS Yes.

MD But that really depends on your personal circumstances and ?

OS It does.

MD ? those around you?

OS It does, it depends on what sort of person, how dependent on systems you are and also, I’m a very proud person, I use personal assistants to get a greater control of life. I want to continue to do that and having to be thrown back on to the welfare system or social services system, in desperation, because they won’t allow me to plan or resource it properly is a frustration and a worry.

MD Okay. You’ve been told by the Camden Social Services Council that you could you use your direct payment a bit more creatively, inverted commas ?

OS Yes.

MD ? in this period, is that helpful to you?

OS I have no idea what creatively ? more creative means and they won’t define it but what I do know is that I can use it to pay if my sister wanted to come up to London and support me, I would pay her to do that: that’s something I couldn’t have done before but beyond that I have no idea what that means. I think it means, I can perhaps pay for shopping, I can use it in ways to meet the needs I need, I think but it’s not defined so I’m nervous because I don’t want to be penalised later on down the road for spending it illegally so to speak because they’ve not defined it.

MD Yeah, and do you feel that might possibly be the case?

OS Well, track record, the direct payments have been policed very, very ? I’d say ruthlessly by local authorities to give austerity over the years, it makes me nervous to spend it, certainly to be given free reign to spend it how I should spend it. Certainly, that’s a big leap but I do worry about what this term means, it would be helpful, very clear guidance about what you can and cannot do.

MD So, a call out there for more clarity around it.

OS Full clarity.

MD It’s obviously causing a little bit more anxiety for you, there’s even less independence for you around this current situation.

OS I think that’s the biggest thing for me: the loss of independence. I’m used to being a citizen participating in our society to the full based around the system I built around PA’s. The fact that that’s falling apart so quickly has been a shock to me, it shows how vulnerable I feel and how anxious I feel about the going forward. Basically, I feel that direct payments is being: the authority where we’ve been in for the last ten years has pared back direct payments usefulness to the point where it doesn’t work in the coronavirus scenario. I need clarity and I need a rethink about how we use this to keep people’s independence so, we can continue to contribute like we should be able to do so.

MD And the situation up in Scotland is slightly different, we’ve got self-direct support in place here but it’s still a (? unclear) but it would be really interesting actually to know if these people who are in a very similar situation to you up in Scotland.

OS It would.

MD I don’t know whether you’ve actually spoken to anybody?

OS I’ve not spoken directly to individuals but I do get a feel for what people are saying in Scotland because I read blogs and things and it sounds similar to me. There’s a frustration that, there’s a worry about policing, worrying about the change of circumstances they’re facing and the lack of flexibility or the lack of reaction from social care to support people. I think it’s something that is a common discussion across the four nations of Northern Ireland, Scotland, Wales and England that people use these services, who want to maintain their independence, they need to come together or there needs to be a wide recognition that they contribute, we’re important, we are citizens and we should be treated as such.

MD Absolutely. And I guess what you’re saying about these are not normal circumstances so, I guess like there will be a lot of learning that comes out of this crisis I think as regards support for people with disabilities.

OS Yes.

MD Is there anything in particular that you can see at the moment that might come out of it or what should come out of it?

OS I think the very first big learning point is that you need to talk to disabled people more clearly about their needs. They are the experts of this and what’s been happening in the past has been, we’ve been directed, told what we can do, whatever. But it doesn’t match our realities. The learning for me is, my reality is: if my PA’s are no longer able to support me, I’m in deep trouble, that’s a reality for me. So, I need to be leading about how to solve that problem. People need to come to me, so we’ve got this term personalisation, it hasn’t really meant much until now: this is what it means. It means that you need to be led by the people who know best about their circumstances so they can correct the resilience they need to live in society. So, for me the message is, we’ve not listened properly not listened enough, and we need to learn from that and look at better ways of supporting people by involving them directly.

MD Because every individual will have their own needs, even in this crisis there may be some things that people share but everybody will have their own needs.

OS Yes, and now you mention that, I did talk to different people ? okay, mainly in England, but it’s quite clear we are coming to at this from our own perspectives. It’s basically, “I need this, I need that” but there are shared themes that come out of this and one of them is about being the expert of their own experience, meaning that in its real literal terms, not in a sloganistic way, tokenistic way. And also the other thing I think is what we share, is the fear that we will lose our independence and that’s something that’s a real discussion about how we build resilience into these systems going forward in the future because although the coronavirus will go away, I think it will be a long time before we recover from this and I don’t want to be thrown under a bus in the recovery process.

MD And can you tell me what role, has social work played in your support currently?

OS What would be the polite answer? Polite answer is: not a lot. I’ve had one phone call conversation with a social worker, reading from a script about what I could and couldn’t do in this current crisis. She wouldn’t define what creative was, she was surprised I was asking for more resources to match the situation I face and said she’d need to go speak to a manager. I’ve not heard from her since. And she basically went through a list of guidance which is on the website that Camden have. That is basically it. My advice to anyone, England, Scotland, Wales, Ireland, would be to push very strongly against social services, basically to annoy your social worker to the point where they do respond to you and understand your circumstances. Speak to your social worker, don’t give up: that’s my advice to the people.

MD And I guess like even with social workers themselves, they’ll have their own set of circumstances…

OS Yes.

MD …too and that’s where the extra pressures are at the moment that…

OS I agree.

MD …everybody is really struggling at the moment with the situation.

OS Yeah, I mean it is helpful you say that because I think that’s maybe a lesson people need to realise is that we’re all in this together. Your biggest ally is actually your social worker and it’s quite clear that they are stretched on this situation at the moment.

MD Uh huh, absolutely. What would be your advice to others who are in a similar situation to you?

OS My advice would be, my first advice would be number one, look at your system: build resilience into it.What I mean by that is, definitely get around you people you can trust, and have a ‘Plan B’ for yourself because other people won’t make that ‘Plan B’ for you. You need to think very carefully about what is your ‘Plan B’? What if this happens, what should I do? Plan that for yourself, it means ? if it does mean friends and family, it will have to be that. Second think I would say to advise people is get as much information and guidance as you can from the websites that are available out there although the guidance can be quite contradictory at times, it is still guidance and helpful to you. And the third thing to do is to follow up that guidance with questions to the right people, social workers, health care professionals. They will be busy, but they will come back to you.

MD Do you think there are particular groups out there at the moment who may not be getting any guidance or support?

OS Yes, informal carers: people who are caring for people who need support and also people who self-fund who are almost invisible. Mainly in older people who are paying cleaners to do extra bits of work, paying family members in cash in hand to support them. Those people I worry about a lot because they will only appear in the system when they’re in crisis and then usually it’s too late. We need to think very carefully about how to reach those people and what messages will give them the guidance they need about what they should be doing at this moment in time.

MD You’ve made efforts to communicate with people around this crisis through creating your own blog and I think that will be really helpful to people. I suppose it’s getting the word out about that as well.

OS It is.

MD Do you plan to do any more sort of academic writing around this issue?

OS Yes, I do. I mean, I’m actually going to speak to one of the ministers this afternoon so, they’re asking…the department of health and social care are asking very clear questions about our circumstances: PA employers particularly so, I’ll be doing that. I’ll be writing my reflections…about a blog on that as well. I’m also connecting with other disability organisations and seeing how they are supporting people and the final thing is I’m just literally connecting with people who come to me and saying, “Look Ossie, this is my circumstance…” sharing my experience as much as I can but as I say, when you’re locked in your home, you can do what you can do.

MD Yeah, exactly. And have you made some international contacts as well?

OS Ironically, yes. Euronews rang me last week and I’ll be going on Euronews tv next week so, I suspect I’ll have a response effect on its own. So, I know that the blog has been seen internationally and it’s been read mainly by health professionals and mainly by the media but also, I suspect people who use services as well.

MD Well that’s pretty much all my questions, Ossie, I mean I don’t know if there’s anything else that you’d like to address or to say that I could include?

OS Yeah, not really except to say that I really think this is a national issue. It’s not an English only and I worry about the fact that they don’t share enough about what’s going on in other parts of the UK because I think this learning across the whole piece that we can all learn from each other and share things. And it’s very important I do begin to speak to other people elsewhere in the UK as well, not just in my patch of the world because it’s very easy to be so focused on yourself when this is a wider issue which effects many people like myself. I just reflect that the impact it’s having on people.

MD Yeah, that’s very generous of you as well. Thank you so much for speaking to me and I’m wishing you all the best with your own health and wellbeing as well in this crisis.

OS And same to you as well, of course.

MD Thanks.

OS We’re all in this.

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