The impression often exists that it is easy for the experts to talk about things like the need for deinstitutionalisation, for family strengthening, for community services, for helping families take care of their children with disabilities. It is easy to talk about all of these things in theory, but what do they know about the difficulties of the daily reality of these situations. I cannot answer this question for other experts, but in my case, the answer is: quite a lot.
In general, over the years, I have spent a lot of time in institutions in various countries. I have worked on the ground helping set up or improve specialised care, foster care, education for children with special needs. I have worked for and with families with children with complex needs or other circumstances that pose serious challenges to their ability to raise their children. And I myself function on the autistic spectrum, so I know what that means.
More specifically, the first two months of the year I lived with my brother’s family in lockdown in Holland, to help them with the care for the three girls, two of whom have complex special needs. The girls are a challenge in normal times, when full-time education, therapies, and respite care are available. In lockdown times, when a lot of this suddenly disappears, and when things are uncertain and constantly changing at short notice – something that triggers anxiety and behavioural issues in both – it becomes almost insurmountable.
While we all dearly love the girls, their needs and the vigilance needed when dealing with them are intense and relentless. Thankfully, there was still some support available, in the form or a few hours of emergency respite care here and there and a few hours of external specialised care assistants on some days. Even with that, the burden is high. Without it, it would be unmanageable.
Unmanageable not in the sense of parents getting very tired and frustrated, but unmanageable in the sense of parents burning out completely and being unable to cope with even the simplest tasks in their own lives anymore. In the latter situation, there would be no choice but to remove the children from their parents, and put them in an alternative care placement, which would not be good for either the children or the parents, and a lot more expensive for the state.
While a lot of money needs to be invested in supporting a family like my brother’s, to enable them to stay together, it is a major saving compared to the alternative. And the outcomes are almost guaranteed to be much better for all involved. I am speaking from experience and I put in the work, as a family carer to provide a bit of respite – at the same time as enjoying getting to spend time with my nieces after having been separated from them due to travel restrictions for almost 11 months. Even children with very complex needs CAN be cared for by their family, as long as the family receives the support needed to be able to handle the situation and to maintain their mental health.
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