The future of learning disability support needs to be cohesive, community-focused, and communicative

The Care Quality Commission’s Home for Good report, published in September 2021, illustrates the benefits community support brings for those with learning difficulties. Following the journeys of eight people previously placed in hospital units and now receiving care within their local communities, the report shows that common hurdles can be overcome through a collaborative process that puts the individual at the heart of it all.

Claire Simmons, co-director at home care specialist In Home Care, adds that an improved understanding of the type of care available locally, and adapting the way it is discussed, is the next step in empowering people with complex needs to live comfortably and safely at home.

First and foremost, we must remember that learning disabilities impact each person differently. One person may display most of the traits associated with a particular condition, others only one or two. Therefore, the care each person provides should be as unique as they are. What scenarios are especially triggering for the person receiving care? How can the care reflect their personality?

The answers to these questions and others besides won’t be found in textbooks or a medical journal. They will only be found if the individual and those close to them are consulted.

A network of support close to the person’s home improves the likelihood of professional care having a positive outcome. Friends, family members, even pets should all feature in the bespoke, person-centred care that the CQC is always on the lookout for, and which is directly referenced in the Home for Good report.

You only have to read through one of the eight case studies the CQC explores in the report to see this in action. Many of them tell of providing the individual with responsibility and ownership of their living arrangements – for instance, choosing the furnishings – which builds confidence and trust where it may have previously been lacking. As is often said, trust works both ways, as illustrated in carers and support workers undergoing specific training so they are able to facilitate the right level of care.
In the case of ‘Jack’, a 25-year-old man living with autism, a specialist team was trained and recruited from scratch and invested a great amount of time in getting to know him on a personal level.

Consequently, Jack had the opportunity to get involved in bricklaying at his new shared accommodation, and this attributed to the creation of a space that he could truly call his own.

A second example is ‘Diane’, for whom home care began while she was still living in a secured facility. Prior to leaving the facility, a community-based team visited Diane on her ward to learn about her interests and were by her side when she moved into her new home, guiding her through each step.

This initial contact between a provider and the person in their care is vital. With change being a trigger for many people affected by mental health or learning conditions, the importance of structure cannot be overstated. And having time aside in the early days for that trust to develop before a care package formally commences reduces the likelihood of the relationship breaking down at a later stage.

Of course, this is all very easy to say but not as easy to do. However, the eight stories have shown that when services, agencies and other parties all work together in line with the person themselves and their loved ones, outcomes can improve.

So now the question is, how do we make that happen?

As a starting point, there should be greater impetus placed on listening and communication, as well being conscious of the language surrounding learning disabilities. Going back to the Home for Good Report, the term ‘challenging behaviour’ is one such phrase which needs to be addressed carefully, as it encompasses not just verbal and physical aggression, but also self-harm and emotional distress.

These moments are often caused by a need not quite being met and is a way for the individual to try and communicate this, but perhaps not knowing how to verbally due to their condition. Working closely with loved ones, providers and other authorities can help implement coping techniques and devise appropriate plans so minimise these instances as much as possible.

Additional time to understand the person’s social circle, family connections, and interests should also occur as part of the care onboarding procedures, and ensure that particular routines are kept. This may also extend to local peer support groups, where the person can learn communication skills, build confidence, and broaden their friendship base.

Finally, it is worth reiterating that support for people with learning disabilities and/or mental health varies case by case. There is no step by step guide, nor should there be. To that extent, the knowledge loved ones can provide is priceless in putting the right framework in place and, ultimately, enabling the person receiving care has a safe environment where they can prosper.