‘A Fundamental Lack of Awareness that these People are Actually Human’: How the Government is Failing Older People with Learning Disabilities

‘A Fundamental Lack of Awareness that these People are Actually Human’How the Government is Failing Older People with Learning Disabilities

A new report lifts the lid on the urgent need for a strategy on how this ignored group can be supported to lead fulfilling lives

The Government’s “blanket erasure” of older people with learning disabilities is leaving a growing population unsupported and piling further pressure on family carers, new research will warn.

Byline Times has seen early findings from a forthcoming national study which outlines the urgent need to avoid a crisis by creating a government strategy for this unacknowledged community.

With around 1.5 million people with learning disabilities in the UK, Manchester Metropolitan University (MMU)’s ‘Growing Older Planning Ahead‘ research lays bare the Government’s short-sighted approach to learning disability support. 

The study estimates around 81,000 over-50s within this population in England alone, many of whom are not in contact with services. In addition, figures show that between 2012 and 2030 in England, the number of learning disabled people needing social care will have increased by almost 70% (from more than 140,000 to 235,000).

Sara Ryan, MMU Professor of Social Care who led the three-year project, said: “Ageing opens up all sorts of different things, you turn down the dial on some things and up on others. If you’re lucky enough, you have a lot to look forward to – but for people with learning disabilities, there’s a blanket erasure of age.”

The findings of the project are in stark contrast to awareness about such issues in the general population, from aspirations about active ageing and planning a fulfilling retirement.

The focus on family carers is significant in light of new estimates from Carers UK which suggest that the economic value of unpaid care in England and Wales is £162 billon a year – equivalent to a second NHS. 

The care system has been underfunded by successive governments and so increasingly relies on unpaid family carers. Many carers cannot work, experience mental and physical ill-health, and eventually become too old to provide support.

Despite this, there is no government plan for this group. ‘Building the Right Support’, the Government’s national plan to create more support for learning disabled people in the community, makes little mention of ageing.  

Local authorities are in charge of commissioning services but generally lack expertise in designing or delivering support for older people in this population. Social workers should take a lead role in such care planning, but there is often confusion about which agency or professional is responsible.

As the new research will outline, there is little information about the support available locally and low awareness among care staff, people and families about care options and rights. In the general population, transition from middle to older age is marked by events such as retirement, downsizing or learning new hobbies. However, for people with learning disabilities, there are few equivalent reference points to mark the passage of time.

The study involved 26 people with learning disabilities as co-researchers and advisors. Seven family carers collaborated on the project, and there were visits to 10 different types of care setting, including supported living (independent living with support from paid carers), residential care, nursing home and family homes.

Dawn Wiltshire, a co-researcher on the project and a self-advocate with charity My Life My Choice, said that just because people with learning disabilities “are getting old doesn’t mean to say they should miss out”.

“They might get things when getting older like dementia, just the same as other people,” she told Byline Times. “They might start not remembering things like other people. But they need even more adjustments and help so they can understand.”

A new Government strategy to support learning disabled people as they grow older would involve commissioners, social workers, house-builders and health professionals.  

Wiltshire added that a strategy could include more money for one-to-one support so that people could “have a life like everyone else”. Now in her 60s, she has hopes for her future support. “I’d like to live in supported living with some extra care if needed, where we have lots of activities, somewhere nearby where I can visit my friends,” she said.

What Wiltshire described sounds ideal, but it is the opposite of some of the approaches outlined in the study she worked on. 

Researchers found places with an institutional approach where staff schedules dictated the type or length of leisure activity. One man in his 60s was still being taken to his local bowling alley by his supported living staff, simply because this was the usual activity offered when he was younger. In a day centre, people were visibly bored, wandering aimlessly, with the television on in the background. 

Without future planning for older age and all the emotional and physical impact this can have – from family bereavement to chronic health conditions – people’s care and support may breakdown. They reach crisis point and need intensive or emergency care placements. This usually involves institutional care miles from home, medication and further distress that can lead to being labelled with “behaviours that challenge others”.

This is what happened to one man researchers met, who for years lived in different institutions far from home and his family. He was considered “challenging” by staff who called him “The Monster”. His story reflects how inappropriate care can trigger so-called ‘challenging behaviour’ – while appropriate support can reduce it.

Five years ago, the man moved into supported living. At first he had two-to-one and overnight support and later, as he settled in, one-to-one daytime support. He chose to recruit “kind and gentle” support staff and decided how to decorate his home. He has two cats, keeps fish, loves gardening and is happy. Looking ahead to his older age, staff support him to manage his health (a smartwatch tracks his fitness) and there is a plan to support him to make healthier choices for the future.

Although rare, researchers found other examples of good care. One nursing home was a bright, spacious and welcoming environment where the six residents decorated and furnished their rooms to their own tastes. Staff had well-established and positive relationships with fellow health professionals, including occupational therapists and hospice staff. The approach was to recognise how people’s needs and preferences change with age.

So why is this kind of support not more widespread? 

One reason could be the low levels of employment among learning disabled people, which could mean that there is little awareness of people reaching retirement age (less than 6% of adults are in paid employment, according to official statistics). 

And although the life expectancy of learning disabled people has increased over the past few decades, the average age of death is still about 20 years younger than in the general population. This might lead care commissioners and providers to assume that there is no need for specific support services for older people from this community.

For MMU’s Prof Ryan, the need to support this growing population is a practical as well as an ethical imperative. Because without the right care, more people will not be properly supported.

“They’ll be wrenched from the family home because their mum or dad can’t look after them any more and dumped somewhere inappropriate,” she said. “[There] the ‘behaviours that challenge others’ labels will increase; medication will increase. We will have a lot more narratives about ‘monsters’.”

Underlying all of this is often something more disturbing, when it comes to how people with learning disabilities are perceived. There is, as Prof Ryan said, “a fundamental lack of awareness that these people are actually human”.