Time

When time reaches;
for the warmth in your heart
and the love in your soul,
and all is hurting and aching,
from words you wish said
and deeds you wish done,
and you need to say
I love you
with all of your heart
and all of your soul;
then do so,
just gently,
just softly
and let her gift to your past
be yours to the morning.

Unreasonable Adjustments

Chris Hatton wrote a blog last week in which he argues that disabled people are subject to systemic institutional disablism in health services.  Using data on the deaths of people with learning disabilities from an Australian study carried out by Julian Trollor, Preeyaporn Srasuebkul, Han Xu and Sophie Howlet  and comparing it to findings on the reported age of deaths in other countries including England, the USA, Canada, Ireland and Germany, Chris argued  that the gaps in death rates between people with learning disabilities and the repeated failure to learn from these differences in death rates, is indicative of systemic institutional disablism. And that whilst some awareness raising had come about as a result of campaigns such as the #JusticeforLB Campaign, little genuine progress had been made in tackling this issue. It’s a convincing and well-argued case.

But it almost inevitably leads to the next set of questions – the why and the how – and in trying to find any kind of answers to those, I think we have to look beyond the boundaries of the institutions themselves into the culture and society in which they are located and in which they operate.

One of the key mechanisms for improving the care provided to people is  the idea that institutions should make reasonable adjustments in-order to make them more inclusive of disabled people. It is an idea that has been broadly accepted and it was incorporated into the Equality Act 2010. Specifically it places the following duty on people and organisations:

(2) The duty comprises the following three requirements.

(3) The first requirement is a requirement, where a provision, criterion or practice of A’s puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.

(4) The second requirement is a requirement, where a physical feature puts a disabled person at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to avoid the disadvantage.

(5) The third requirement is a requirement, where a disabled person would, but for the provision of an auxiliary aid, be put at a substantial disadvantage in relation to a relevant matter in comparison with persons who are not disabled, to take such steps as it is reasonable to have to take to provide the auxiliary aid.

Equality Act 2010

In theory this should make a difference, the language sounds hopeful and in practice has involved organisations developing policies, recruiting learning disability nurses, delivering annual health checks and a range of other ideas many of which are listed on the Public Health England Database.

If we take the database as representative of the work of those organsations that have been pro-active in trying meet their responsibilities under the duty. Then what is interesting about the adjustments, is that most are adjustments to the way in which the organisation provides information. There are relatively few examples of how organisations should change their systems in order to make them more inclusive and effective for people with learning disabilities. Although there are some exceptions to this – for example the work done by The Royal Berkshire NHS Foundation Trust shortly after the Equality Act 2010 became law.

It’s probably worth more detailed analysis, but the examples illustrated in the database, indicate that most core care pathways, most policies and most internal hospital processes remain relatively untouched by the need to make reasonable adjustments to their “provision, criterion or practice”. This not only seems to vindicate Chris’ point about systemic institutional discrimination it also allows us to conceptualise what a “reasonable adjustment” actually means in practice.

So on the basis of what organisations have actually been doing, then seven years on from the passing of the Act, it would seem that we have come to define a reasonable adjustment as a minimal change to the way in which our health services operate, a change that doesn’t affect the way in which core services are delivered or monitored. This is despite the Confidential Inquiry into the Premature Deaths of People with Learning Disabilities (2013) , a commitment in the NHS England Mandates for 2014-15 and 2016-17 to reduce health inequalities for people with learning disabilities, The Mazars Repot, the ongoing Learning Disability Mortality Review and Transforming Care – Building the Right Support.

We could put it another way. We could argue that our society’s actions define significant and meaningful changes to the way in which health services are provided to people with learning disabilities (the kind of adjustments needed to keep people alive) as “unreasonable adjustments”. In the minds of most, expecting a doctor to change the way he or she engages with people is unreasonable. Allowing more time to consult with a patient with a learning disability is unreasonable.  Expecting people to pay more tax to pay for that time is unreasonable, because services are only funded to be delivered to most people, not all people.

Chris is right, there is systemic institutional disablism but I think it goes beyond that. We live in a society that views the life of a person with a learning disability as less valuable than that of the average voter and tax payer. And that reality, shapes access to services and the measures that are deemed reasonable to improve that access. And whilst our society has moved on from mercy killings and deliberate starvation; wherever we live around the world, the difference in life expectancy between the wider population and a person with a learning disability, is at least a measure of our ability to look the other way while other people die and at worst an expression of our violence.

Today I heard of the death of another person with a learning disability who didn’t need to die.