Emotional Cost Benefit Analysis

Being a parent is one of the most rewarding things you can undertake, bringing new life into the world and supporting your child to grow and thrive, be happy and have a fulfilled life is one of the most important jobs in the world. But its hard work, the after school activities, the play dates, parties, getting them up and ready for school, the homework, nightclubs, friends, cost, the washing, ironing, cooking, cleaning – the list goes on and on but you get my drift!

Most of the time parents of children without any additional difficulties find it hard work and tiring to effectively support their children but having a child with additional need places a huge added burden on the parents and or carers. The burden is often not about the child but the lack of support for the family, the constant battles, fights to achieve even small outcomes, the continuous referral on culture and lack of anyone taking responsibility, the ‘treacle of bureaucracy’ which families have to wade through it absolutely exhausting. Even the people working inside of these bureaucratic structures sometimes admit they do not understand their own world, then how are families expected to get to grips with it.

Its often said that parent/carers have to become overnight experts in the health system, the educational system and train themselves up in how the social care system works, they need to understand the basics of the law as it applies at different ages and stages of their child’s life, the need to be nurse, communicator, personal care assistant, teacher, and usually on very little sleep.

What we find works as one of the most simple and effective ways to help families when we first start working with them is to do what we call; an ‘emotional cost benefit analysis’. Different families and different people within those families can manage different levels of stress, some are very adept at managing multiple issues at once, whereas others need to just attack one at a time. Often when families come to us they have already been through so much bureaucracy, been passed from pillar to post, been referred on and then referred on again, waited months for assessments and watched staff come and go in different departments, they are usually exhausted. We sit with them, we listen to them, we learn from them, we make time to understand the pressures on them as a family, are there other children who need attention also, are their elderly parents, grandparents, is job security a worry. Parents are not just parents, they are also people with extended relationships, family and friends beyond their own immediate family. People do not exist in isolation they are part of their community.

By listening to parents and carers in this way we build up a picture of their pressures, their lives, we gently tease out what is important to them, what will make the biggest difference to them now, in 3 months, in 6 months, in a year. We do this through the process of analysing how much emotional energy they have in the tank; how much can they take on and we are honest with the toll that appeals, and other protracted disagreements have on their emotional and mental health.

One of our families a few years ago told us it took her 6 months to recover from the stress of going through a tribunal appeal.

We work in partnership with the family giving them realistic achievable targets that we will work towards together and we go for the issue that will take the least amount of emotional strain for the maximum gain for their child.
People working within the education, health and social care system often admit they only see their silo, or even their silo within a silo each one of these systems, be it education, therapies, CAMHS has their own thresholds, legislation criteria, and sometimes regulatory body, whereas what do parent/carers have?

We find that talking to parents and working through our emotional cost benefit analysis with them helps them and us pinpoint where to start, to achieve a realistic plan because life happens, nothing is ever static, we do what we can with the resources we have but we all want the best possible outcomes for our children.