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Designing for Individuals with Profound and Multiple Learning Difficulties (PMLD)

04-02-2021

Accessibility and inclusion is high on the political and social agenda across the Western world, ensuring that everyone can live as independently as they choose, safely. I have always argued there is an enormous amount of information and research on making environments accessible to people who are physically disabled. You only have to cross the road to experience the everyday technology that assists the blind and deaf - most of us no longer notice audible crossing notes, tactile paving, ramps or handrails. There is also a great deal of discussion about how our seniors should be housed to allow them to live independently, whilst still socially engaged and supported, including my own regular musings on the subject (Inside and Outside Living for Seniors and those with Dementia; Designing a Community for Seniors Senior Living in Urban Design. Robin Callister. 2020). Given the relatively high incidence of cognitive disabilities, I am surprised to consistently find so little research about making environments accessible to this group with even less research about flexible environments for people with severe mental disabilities, such as those living with PMLD. This article discusses some of the design considerations that I feel should be top of mind when building homes for this societal group.

What are Profound and Multiple Learning Difficulties?

Individuals with profound and multiple learning difficulties (PMLD) have more than one disability. This may include profound developmental delays, learning difficulties, physical disabilities, sensory impairments, and mental and health problems, and can include Autistic Spectrum Disorder (ASD). It is the combination and resulting complexity of impairments that significantly affects their ability to communicate and be independent and that means that they will all need high levels of support with most aspects of everyday life (Mencap).

As PMLD covers such a wide range of conditions, the needs of individuals in this group will vary hugely both in terms of the support they need and the issues that they face in everyday life. However, a common similarity is that an environment ‘triggers’ a behavioural response - which can be positive or a negative. Of course, everyone has different triggers, and each trigger will generate different responses in each person - bright lights, noise, shapes and situations can impact some but not others. Resulting behaviours can range from the positive - calmness, happiness and a sense of community to the negative: disruptive, destructive, and for some, even life threatening to themselves and to others. In short, everyone with PMLD faces slightly different challenges that vary in severity, has different support needs, and so each will need bespoke care plans, which makes having a one-size-fits-all design response almost impossible.

Designing Buildings for people with cognitive impairments

How an environment looks and feels is equally important to its function when designing environments for people with cognitive impairments. As a father of an autistic little boy, albeit not largely affected by his condition, I have experienced first-hand how a building, street or space can affect him and his concentration, so I have some understanding of the importance of designing neutral, functional yet uplifting environments. I’ve found that the key is to find environments that are familiar and in most cases, minimalistic. This means designing rectangular spaces, with four walls, multiple light sources, such as windows, and at least two egress routes so that no-one ever feels trapped should someone inadvertently stand in front of one of them. By designing in this way, users face fewer challenges from their environment. A more complicated design will most likely be seen as a stressful space, which is ‘difficult’ to navigate which in turn will lead to more disruptive behaviours. Indeed, what most of the population seek in terms of stimulating and interesting spaces may prove problematic for someone with behaviour challenges that are compounded by complex environments.

We can see parallels in this design-ideal with the care ethos for those suffering with dementia, where the familiar makes everyday activities easier to understand and to navigate, adding structure and enjoyment.

However, people with cognitive impairments will have different needs depending on their age, personality, or even the vagaries of the season or the time of day. Layer on top of this the need to design a building that can cater to everyone without it becoming either boringly neutral or intensely busy. This is further complicated by the wide age range of people with PMLD. Children and younger adults need very different activities and support compared to older people. School-aged children need education, young adults need to develop life skills and independence, and very young children would benefit from onsite parental accommodation to allow them to enjoy family life. It’s also important to be able to offer temporary care accommodation for respite or longer-term palliative care.

Design considerations can change lives

Studies confirm that the physical environment influences health and the emotional state but very little research has focused on mental and behavioural health settings. Following are just a few of the techniques recognised by architects and psychologists that will help minimise negative reactions and foster positive behaviours.

There have been very few studies on the optimal accommodation for people with cognitive impairments. Much has been written and discussed about the perfect number of resident bedrooms in a care home and how there is a lot of empirical evidence about the optimal ratio of bathrooms for assisted living residents. Although it is easy to apply this to the design of cognitive behaviour units, as yet there have been very few studies about whether we should design specialist multiple-unit homes that are more controllable and easier to cater for, or whether people would benefit from larger facilities with a more economic staffing model, or even a ‘village’ environment for families with support on hand for every member.

Is a ‘one size fits all’ base model required or can we design spaces that utilise modern technology and embrace current architectural and environmental psychology, that are flexible enough to be ever-evolving to meet individual needs?

These are questions that architects are debating, however, we do know that people with PMLD have different requirements and preferences so it is unlikely that there is one-answer-that-fits-all. For example, some people will want to live alone whilst others will want to live socially with others. What we do know is that designing buildings that allow both personal space and communal facilities is really important, as is ensuring that there is safe, separate yet linked on-site accommodation for staff, including overnight facilities for care teams and family members. We also know that people with PMLD need space - personal space for their own use, lots of room in corridors to pass each other without feeling that others are encroaching on their personal space.

Carefully designing the interior of the building is of equal importance to the outside, but it faces the same issues as the building design. Everyone with PMLD is different with differing triggers, which may include hypersensitivity to light or sound or to temperature extremes, or may be caused by engagements with other people. Each room should have a clearly defined function, any decorative furnishings or design features should be avoided as these demand attention. Using soft pastels or earth tonal colours, adding doors to all cupboards and shelves to hide ‘clutter’, and not hanging paintings or pictures, removes visual ‘noise’.

The use of high rated insulation is an imperative to minimise sound disruption: one of the most common triggers in people with PMLD, as is light, particularly flashing lights. Many people with developmental disabilities see flashing lights that we cannot, so fluorescent tubes and CFLs should be avoided. It’s also important to offer ways to dim or brighten lighting as suits the individual using the room. This is easier to do by having multiple light sources, rather than one single window or main light. Even the simple screening of headlights from a nearby road can make a big difference.

It’s also important to consider a person’s need for personal security. The provision of several doors in every room so that they always know that there is another way out if somebody is standing in the way, build kitchens that are open at both ends so that you can never be pushed into a corner in a place where we keep knives, avoid placing the doors to different flats directly opposite each other as many people with cognitive disabilities become insecure if they open their door right out in an unpredictable environment.

Opportunities to use technology and create community environments

I believe that we should be creating thoughtfully-designed secure, stimulating, and therapeutic environments that allow everyone with cognitive disabilities, no matter their age or ability, engage with others, learn and grow, and remain part of a family and the wider community. Whilst we provide caring environments for seniors with dementia, for example, there are fewer developments for those who are younger in years living with brain injury, cognitive impairment and learning difficulties. So often, these conditions are present from birth and parents work hard to provide a loving home, however save for the very lucky few, the home environment is less than ideal in terms of space or environment. One idea is to build a combination of multiple and single residential homes that allow families to stay together with support on site for every member of that family.

As discussed, I doubt that there is a 'one size fits all’ base model that allows for all the different needs of people with PMLD but I think that there is an opportunity to use technology inside a building to introduce the flexibility that is needed. Once we have smart, reconfigurable buildings, we can offer the environment to both residents and visitors to boost the health and well-being through regular activity and peer engagement - adding much-needed structure and variation to lives. This would be available to all as part of a regular routine and would perform an essential function of their treatment as important as medication or diet.

To summarise, when designing for PMLD, we need to consider the impact the physical environment has on the resident’s emotions and how the design can reinforce positive behaviours whilst ensuring the safety of both the person with the disability and the staff and visitors. We also need to ensure that individuals are “able to socialise, not be housed in ‘prison-like’ structures away from the community (Bo Hejlskov Elvén https://eng.hejlskov.se/).


Notes:
Saunders was founded in 1988 and are a 70-strong national practice of architects and urban designers. They offer a full design service: from feasibility and planning submissions, through to delivery of projects both large and small, across a variety of sectors.

Robin Callister has 20 years’ experience as a residential, senior living and healthcare architect including designing, achieving consent and delivering nursing, dementia, mental health, and independent living projects. Robin has been involved in award-winning senior living schemes for a client list as broad as Signature Senior Lifestyle, Sunrise Senior Living, BUPA, Royal Star & Garter, and the Order of St. John Care Trust.

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