The government promised to ‘deinstitutionalise’ learning disabled people. It’s failed miserably.

In 2015, the government and NHS England pledged to end the institutionalisation of learning disabled people, with tangible results within three years. Their latest statistics show they’ve failed pathetically – even as the government cynically joins in with Learning Disability Week.

“Homes not hospitals”

In October 2015, NHS England launched its “Homes not hospitals” plan for learning disabled and/or autistic people. At the time, I wrote for the Independent that I was sceptical. Not because I disagreed with the notion of ‘independent living’ (that is, people living in community settings, not hospitals). But because I was concerned the plan would be rushed through to the detriment of the people it was designed to support.

I also echoed what Mencap said – will the money be invested properly? It seems that my predictions may have come true.

In its 2015 report, NHS England said [pdf, p6]:

In three years we would expect to need hospital care for only 1,300-1,700 people where now we cater for 2,600.

This doesn’t look like it’s going to happen.

Failing pathetically 

The data shows [xls, table 8] in March 2015 there were 2,395 people in inpatient settings. In May 2018, there were 2,400.

NHS England has been trialling its strategy in six “fast track” areas, which [pdf, p5]:

drew up plans over the summer of 2015 and are already making a difference on the ground. Together they envisage… [reducing] usage of inpatient provision by approximately 50% over the coming three years.

If “making a difference on the ground” means next to no improvement, then NHS England is performing exceptionally well.

For example, Nottinghamshire Healthcare NHS Foundation Trust was one of the fast track areas [pdf, p5]. In February 2016, it had 95 people in inpatient settings [xls, table 13, row 19, column D]. Fast forward to March 2018 and the number was 120 [xls, table 7, row 70, totals of columns F-Q]. No 50% reduction here, in fact a 26% increase – even with an additional £1.21m in funding to put the plan into action.

So, the programme appears to be failing. But why?

Fragmented thinking?

The National Audit Office scrutinised services for learning disabled people in March 2017. It found that real terms funding had increased [pdf, p8]. But it warned [pdf, p13] that NHS England and its partners in the plan:

have not yet put in place the necessary conditions such as community-based accommodation and support, a workforce with the right skills, and proven and timely ways to enable the funding to follow the patient. Unless solutions to these problems are successfully implemented, there is a risk that progress seen to date will not continue throughout the length of the programme.

But why hasn’t NHS England put the right measures in place to make the plan a success? For me, it’s because learning disabled and autistic people are seen as third class citizens in the eyes of public bodies and organisations.

Learning disability: an afterthought 

As I previously wrote, the death of Richard Handley from constipation – yes, you read that right – was a gross failure for the notion of independent living. Not because I think the idea is a bad one. But because, as Handley’s death shows, it appears that some providers use it as an excuse to cut corners and save money. This is endemic of a broader problem – one of a complete lack of regard for learning disabled and autistic people’s lives.

NHS England itself is currently reviewing the deaths of over 1,300 learning disabled people. Of the reviews it’s done so far, one in eight showed failings – from abuse to neglect. The 2011 Winterbourne View abuse scandal encapsulates this. 11 care workers were convicted of ‘ill-treating’ learning disabled people. As BBC News reported, they “repeatedly pinned down, slapped, dragged into showers while fully clothed, taunted and teased” people supposed to be in their care.

After this, ‘lessons’ were supposed to have been ‘learned’. But, as author of the Winterbourne View report Sir Stephen Bubb told BBC News, NHS England’s review of deaths showed “endemic institutional abuse” still exists:

There can be no community more abused and neglected than people with learning disabilities and their families.

How many more deaths before we tackle this injustice?

In this atmosphere of “endemic institutional abuse” against learning disabled people, we’ve also seen incidents like the lynching and beating to death of 23-year-old Brendan Mason in 2016.

The NHS may have grand plans for learning disabled and autistic people. But until there’s a cultural shift in how these people are viewed, it’s likely they’ll continue being treated as third class citizens.

Get Involved!

– Sign the petition to make learning disability and autism training mandatory.

– Support Disabled People Against Cuts (DPAC), fighting for disabled people’s rights.

Featured image via Michelle Maher – Twitter