Won't someone please think of the adults?

[Posted on 4 November, 2020 by Gunilla Westman Andersson]

Many emphasise the importance of early intervention, i.e. identifying difficulties at an early age and then implementing suitable support measures to promote positive development. Like many others I focus primarily on younger children, not least in my research. We want to build a foundation for improving quality of life, starting in childhood and lasting all the way throughout adulthood. Many studies have shown what a positive impact early intervention can have on children with ESSENCE problems, so it is certainly well worth implementing. However, it does come with a number of challenges that must be considered and addressed. This includes adequately examining and mapping out issues for individuals of all ages, help at preschool and school, various support measures for both the individual and their family, etc.

Small children obviously need care. They still do as they get older, but they are of course also expected to grow increasingly independent. The question is what happens once the child eventually finishes school, moves out and has to face the reality of adulthood. Research shows that the loss of school-related routines can often lower quality of life in people with difficulties under the ESSENCE umbrella. This is perhaps most surprising for individuals who have seemingly got on quite well at school and generally seen positive personal and academic development. All of a sudden you are instead expected to take responsibility for your own life, move out, undertake higher studies, get a job etc. That is why we need to constantly keep developing care routines for people with ESSENCE – at work, university, social care services, extracurricular activities etc. The fact that someone seemingly does fairly well at school should not lead to society suddenly abdicating any and all responsibility for that person; maintaining a good support system is the best way to make sure the person can have a meaningful life and participate in society according to their individual circumstances. Some of our universities offer academic support, but there is still much to be done in terms of enabling people to use the resources available in order to reach their education goals.

The Swedish mass media have recently shown examples of adults with significant disorders living in homes that none of us would ever choose to stay in voluntarily. This is shocking and saddening, especially given that we have legal texts and policy documents guaranteeing adequate support for these individuals. Most of us can, to a relatively large degree, choose what we want to do and how we want to spend our time. However, some people are not able to do so and are instead completely dependent on others understanding individual needs and making good decisions accordingly, and a structured support system offering the opportunity to have a good life. The first major question that must be answered is how we view people. Do we value all people equally? The answer should hopefully be a resounding “YES”, but even so, do we really practice what we preach?

Helping and supporting another person requires the ability to conceive of their individual needs and desires. In order to do that, I think one must first learn to analyse one’s own needs and desires. After that, I would need to consider what it would be like if I could not speak for myself and instead had to have someone else do it for me. In other words, one must try to get to know and understand others and then try to meet their needs in the same way that you would like your own needs to be met. Seemingly minor needs can quickly turn into major ones if support is not provided in a timely manner. We need good and relevant knowledge, starting at the societal and organisational level. We must also get better at recognising the people working for and with individuals who are unable to control their life situation in the same way that most of us can. This is a very important professional role that requires education at all levels. If we indeed believe that all people are equal, then these jobs should get the respect they deserve!

There are great examples, one of which I get to see up close at a group home. The staff is committed, seeing the needs of each individual, treating everyone with respect and warmth. The atmosphere is nice and it feels like a real home. Everyone helps to plan activities (according to their own ability) where individual interests are taken into consideration. Personal space is respected, but efforts are also made to foster a sense of community. New employees are guided by more experienced co-workers, which teaches them practical aspects and helps instil them with the right values. This ensures that individuals are treated with the same warmth and respect even as staff members are replaced. The result is an environment where everyone is happy – both the staff and the people living there – and this leads to stability and quality. Of course, there is always room for improvement, but as long as one has the right foundation in place, such improvement is far easier to achieve. Sadly, we are often met with reports that indicate a very different, less functional environment at other group homes. This naturally leads to negative experiences, primarily for those living there, but also for friends and family who want the best for their loved ones.

Inclusiveness has become a watchword in today’s society, but does it really include everyone? We all have a responsibility – whether as professionals or just fellow human beings – to do what we can. Kids with specific individual needs eventually grow up, but they may still need support. Adults deserve the chance to have a meaningful life just as much as children do.

[This is a blog. The purpose of the blog is to provide information and raise awareness concerning important issues. All views and opinions expressed are those of the writer and not necessarily shared by the GNC.]