Health condition does not equal Vulnerability does not equal Need for Support

Sorry - blog overload here. This will be a quick one. Again, because the statistics I know how to find more quickly are about people with learning disabilities, this is what I will focus on here. But, as Katie Clarke (@katietraining) has pointed out very forcefully, these are not issues specific to people with learning disabilities, with some nuanced differences they will apply to many groups of disabled people in similar situations. A collective response and push that unites people is most likely to make a difference.

As discussed in my previous blogpost, the government guidance on social distancing defines groups at 'increased risk of severe illness from COVID-19' in terms of age (70 or older), a set of individual health conditions, being pregnant, and/or a 'chronic neurological condition' where learning disability is specified as one of these conditions. There is also government guidance on 'shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19' ('shielding' involves at least 12 weeks of rigorous self-isolation) - people in this group are defined by a series of discrete medical/health conditions.

What do I think some of the consequences are of this for people with learning disabilities?
1) Although people with learning disabilities are more likely to be experiencing some of the health conditions associated with 'vulnerability', placing 1.1 million people with learning disabilities in England into a 'vulnerable' group in a blanket sense rather than on the basis of health conditions that people may have seems excessive.
2) Defining 'vulnerability' and 'extreme vulnerability' in terms of a set of individual medical conditions means that many people with learning disabilities with multiple health conditions (none of which individually are on the list) and need for 24-hour care support do not meet this 'extreme vulnerability' threshold while actually being at substantial risk in terms of the consequences of COVID-19.

Why does defining 'vulnerability' in this way matter?
1) Given the consequences of emerging guidelines about how disabled people may be treated by hospital services if they have COVID-19, many people are worried about identifying themselves officially as 'vulnerable' or 'extremely vulnerable'.
2) Being defined as 'vulnerable' in the government strategy may a factor that hinders people with learning disabilities from volunteering and helping others, which many people want to do and are in an excellent position to do.
3) To get 'extra support' if you are in self-isolation, you need to register with the government as a 'clinically extremely vulnerable person' (although to be honest many people will be trying to get support from their local communities to avoid their names being on such a register). And as I've outlined above, many people with learning disabilities who need this 'extra support', even on health grounds, will not reach the medically defined threshold for getting it.

I think the issue of who needs 'extra support' (or some help from other people - which we all do, all the time, in different ways) needs to be decoupled from whether a person has one or more specific medical conditions. Just a quick look at the range of living situations that people with learning disabilities are living in suggests that many people might want some different help (and might want to make a contribution), as the routines of daily life and connections with other people have changed so radically and many people with learning disabilities may for financial and being controlled reasons not have the kind of access to technology to connect regularly with other people and the world in general. Many families of people with multiple health conditions are working flat-out in caring for their family member, with diminishing and changing support teams as COVID-19 hits, while worrying about what will happen to their direct payments and other suspended rights to support when the Coronavirus Bill takes effect.

For example, just looking at the number of adults with learning disabilities getting long-term adult social care gives a sense of how many people and families might need 'extra support' that may not be due to a medical condition but absolutely needed to help people through while reducing the risk of a person getting COVID-19 in the first place. In 2018/19, well over a third (37%; 49,170 people) of all adults aged 18-64 with learning disabilities in England were living with their families. Almost a quarter of people (22%; 29,170 people) were in some form of supported accommodation and more people were in tenancies of various forms, where social care support may be limited anyway and particularly disrupted at the moment. Only 16% of working age adults with learning disabilities (21,150 people) getting long-term social care were living in residential care, which seems to be the main focus of government social care strategy concerning COVID-19. And this is not including the 17,045 adults with learning disabilities aged 65 or over getting some form of long-term social care, the likely much larger numbers of adults with learning disabilities not recognised as such by health or social care, the almost 70,000 children with learning disabilities in school, or the more than 30,000 children with learning disabilities who are looked-after children.

Within all these groups of people (and for most people, their families too), and for many more groups, there will be many people who whom 'extra support' will be essential to help people get through. I can't emphasise enough that a centralised state response to all these people is not necessary or even desirable - there are so many good local initiatives that are in a better position to include people. But people and families need urgent support now, that isn't dependent on reaching a 'medical' threshold, and that works with individuals to support people with what they need in ways that are flexible, anti-bureaucratic, reliable and reassuring. Health condition does not equal vulnerability does not equal need for support.