Impossible choices for new parents of disabled children?

choice signpost
Editorial for TAC Bulletin, May 2011

The coalition government is undoubtedly formulating strategies to give parents more power in selecting and securing support for their children.

What the plans are will emerge over the next few months and we should have a good sense of the new direction by the autumn.  What seems likely is that parents will be given some sort of budget or even perhaps, in time, cash in hand to buy what they want in a market place embracing statutory services, the community and voluntary sector and commercial organisations.

While I have supported all moves in recent years to empower parents (and, just as importantly, to remove the policies and practices that disempower new parents of disabled children in the first place), I see great dangers in offering choices that new parents are not equipped to make and not offered support in making. Before I am accused of patronising anyone, let me explain my deep concerns.

The author and parent, Nia Wyn, in her book Blue Sky July (Seren, 2007) illustrates inadvertently what I see as the problem. Her son, Joe, diagnosed as a baby as blind with cerebral palsy, is offered a range of interventions selected and secured by Nia who is well able to find out what is available and to get what she wants for him.

My reading of Blue Sky July suggests that she opted for physiotherapist, speech therapist, medication for epilepsy, 'doctor at the eye clinic', sensory rooms, 'oxygen tanks', patterning, Reiki, cranial osteopath, and muscle tapping in Joe's first year, and then a private Peto-trained conductor (who helps with the patterning!), music therapy, Steiner nursery, massage, 'rocking' therapy, a 'second skin', botox, and faith healing in the ensuing pre-school years.

If this seems to you like a lot of interventions, my recent visits to Kidz-in-the-Middle and Naidex exhibitions suggests a blossoming of groups and companies offering a very much longer list of interventions, products and services for parents to put in their shopping bags.

Before continuing the theme of parents' choices, we could ask about the choices infants can make in this. While he or she cannot discriminate between interventions, the infant might have some sort of response to the number of things going on, the amount of time spent each day on things other than the usual baby activity, the number of demands for extra effort. While, in my view, some disabled infants are overloaded with practitioners and programmes at the expense of their quality of life, I have not yet met an education or therapy service that formally assesses an infant's emotional, psychological or social readiness before adding a new intervention to the child's list. Disabled babies and pre-school children are given no voice in this push for development and learning.

But let's return to choices for parents. Looking at the list of Joe's interventions in the years after 1998 and adding to it all the new opportunities that are available now, and that will be put on offer in the near future, how will parents know what is any good? How will they evaluate each interventionist's patter (some of whom will be pressuring vulnerable people for a sale)?  And when they do sign up (and pay up) for this or that therapy or programme, how will they know if it will fit comfortably with the other things the child is already receiving? (How does botox fit with oxygen therapy? Can patterning be used with a child in a Conductive Education programme?) Another anxiety – how will they establish the competence of the people providing the interventions?

If a politician reassures you that there will be knowledgeable people on hand to support parents in their choices, please inform him or her that, by and large, there is no 'knowledge' in the field of early childhood intervention for disabled children. We do not have a body of science to refer to. The more complicated a child's condition, the more each child is a new mystery and the more we all must resort to trial and error, groping in the dark with little more than a 'suck it and see' strategy to offer new parents.

These problems do not come with the coalition government. In our traditional services there was always the danger of overloading some disabled infants and there has never been an effective early childhood intervention science. The question has to be, 'Will empowering parents to select and secure support for their child improve the situation?' Perhaps while we wait for an answer to emerge, the best we can achieve is to support parents as best we can (if they want us to) as they throw their dice or, eyes closed, stick their pin in the map.

For good or ill, radical changes are coming and, in part, the coalition government is creating a bigger space for changes that were already happening. Statutory services (health, education, social care) will soon cease to be at the core of support for children with disabilities and their families. They will cease to be the main providers or deciders of what children and families get. This will require a fundamental shift in how statutory service providers think and how they shape what they offer. There is very great danger that some new parents will be even more confused, even more lost and even less supported than they have been in recent decades. I see babies going down with the bathwater.

Peter Limbrick

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