I’ve been thinking about posting this for a few days and wondering what I might have to say that’s different to the information that’s already available or expands on it in ways that are helpful for disabled people and parents of disabled children.
New normal
From what I’ve seen so far (and what is known about the general pattern of pandemics), COVID-19 is going to be around and a major difficulty [both personally and in terms of the overall capacity of the healthcare system] until a vaccine has been developed and administered to a reasonable number of people. That’s at least a year away and I reckon probably closer to two years.
What this means is that the advice about handwashing and ways to cough and sneeze that minimise the chances of passing on infections is here to stay. It needs to become routine for people for whom it isn’t already. It may mean some backwards steps for children who are toilet trained but not great at washing their hands effectively – they may need specific teaching and extra supervision until they can reliably wash all of the surfaces of their hands.
I suspect there’s going to be a lot of people in a few months time who develop skin problems as a result of washing their hands very frequently. If you already have problems with your skin, it’s probably worth getting advice from a pharmacist/nurse/GP/dematologist early about the best ways for you specifically to wash your hands. If you don’t, it’s almost certainly worth finding an emollient cream to use as often as you can after washing your hands.
These recommendations about handwashing are probably going to be difficult for some people to follow:
- some people with pre-existing skin conditions
- some people with sensory processing problems who find the physical sensations of handwashing really unpleasant, or if they’re OK with that, find say, the noise of handdryers in shared toilets intolerable
- some people who have pre-existing anxiety around hygiene/health, who might have established rituals for handwashing or who might, in their anxiety, think the guidance doesn’t go far enough
There’s also going to be an increased overall burden on the NHS, which is almost certainly going to lead to increased waiting times for referrals as resources are diverted to deal with COVID-19. There isn’t a great deal anybody can do about this, though I think it’s probably wise not to delay seeking any referrals you think you need.
Isolation
I don’t think it’s scare mongering to suggest you have a look at the advice on self-isolation and to think about whether it’s something you could realistically achieve with your particular family/household circumstances. Many disabled children won’t be able to manage what is needed to minimise the infection risk. Even those that can are likely to find 14 days in limited numbers of rooms in their home very difficult unless they’re feeling unwell enough to sleep. In some cases, you may be better off declining to self-isolate and having the child admitted to hospital. This is particularly likely to be the case where a child needs a lot of care. Paid care staff may themselves become ill or need to self-isolate meaning you have less support than you would usually.
It is likely this will become less of a problem later on in the outbreak when there will be more advice around general social distancing rather than isolation of ill people.
You might think about toys, hobbies, books and so on that would be likely to be entertaining for your child in advance. For some children the lack of exercise will be really hard and you might be able to find suitably sized home gym equipment. If you have a private garden, you might consider new garden based toys and/or exercise equipment. If you’re into nature and think not being able to go outside will be a particular problem for you, you might consider what house plants you own and whether cultivating some more, maybe including some herbs or similar will help. This is perhaps especially important for people who live in flats without gardens.
School closures
I suspect these will happen, it’s just a matter of timing. I have seen no published information so far about plans for residential schools for disabled children. There are pretty good reasons for some of these schools to stay open, to carry on caring for their disabled children. If your child is at such a school, it’s worth having a discussion with the staff there about their plans and contingency plans.
The school might move the children’s bedrooms around, so that all of those who are ill are cared for together, away from the children who are well.
If you’re in a situation where you wouldn’t be able to care for your child at home without school, it’s probably worth contacting social services for an assessment of your child’s needs for social care and your own needs as a carer. If you already have a social care assessment setting out support you need during school holidays but not during term time, this is a good starting point for the sort of support you’re likely to need if the schools are closed during term time. Some of the support that’s often available during holidays is unlikely to be made available eg. group activities for disabled children, mainstream group activities, as they defeat the purpose of the school closures. So, you can stress to social care that you will need an equivalent replacement service.
If you don’t have existing social care suppot, you may find you need some now, as the demands of caring for your child in circumstances where school is closed and perhaps other care arrangements have broken down (eg. your childminder is ill).
You might find other parents are in a similar position to you and perhaps willing to accept a slightly higher risk of infection by meeting up with you and your child – depending on the children’s needs, you may find it a welcome break to have two adults caring for two disabled children rather than being on your own with your own child.
If your child is in receipt of NHS Continuing Care funding, it’s important to think through how they would be cared for if existing trained support workers/paid care staff/nursing staff become unavailable due to their own illness – discuss with the people responsible for the care plan and any agencies or other companies who supply staff.
If your own circumstances are very complicated and you’re in a position where you cannot safely care for your child at home, remember that there remains a mandatory duty on the LA to provide accommodation per s.20 of the Children Act 1989 where a parent is prevented from doing so. Social care services will be stretched and will try to discourage you from making them fulfil their duty, but it is an option. It’s also useful as a consequence for children’s services departments that don’t take requests for help to enable you to manage at home seriously.
If your child’s school is likely to close, it’s worth discussing with them how they are intending to set work for the children over the closure. For some children, ongoing school work they can probably complete much faster than in a class setting, will be broadly welcomed. For others, who maintain a strict dividing line between home and school, attempts to persuade them to do school work at home will be extremely frustrating for all involved. Schools do have to make reasonable adjustments to their policies to accommodate disabled children, so for younger children who won’t be persuadable into doing what they think is school work at home, it is worth trying to agree a range of activities that will extend their learning whilst not appearing to be school work. For older children, particularly teenagers preparing for GCSEs, the school should be working with you to explain the situation isn’t typical and that it is essential they carry on with school work.
Uncertainty
Whilst the general course of pandemics repeats over time (so is reasonably well known), there’s still a lot we don’t know about COVID-19, how the UK Government will respond, how governments internationally are responding, what the WHO advice will be and how other international events will interact with it. This means a lot of the planning that can be done has to be contingency planning of the “if x happens, we’ll do y”. This overall situation is likely to be inherently stressful for many people. Some decisions will have to be made without complete information. It’s worth thinking about activities for children to help them tolerate uncertainty better.