It’s not the most exciting content for a blog post but bear with me.
We all fear the dreaded word, ‘paperwork’ in work and in life, but so much more when you live with a child who needs so much more ‘paperwork’ than the average person. The question is and one that I have been pondering is, do we need it at all?
I think we call this ‘life admin’ now, which is probably just a nicer way of talking about paperwork for the home. Why have we suddenly needed to coin this phrase? Do we have more admin than we had before?
Most parents we know joke about having a Personal Assistant to deal with all the admin that comes with a child who has a disability. Some parents already have one! It begins with the dreaded but incredibly beneficial-in-all-senses-of-the-word DLA form (Disability Living Allowance). This is discussed when our children are just 9 months old depending on the diagnosis and whether this will affect physical development or care needs.
We could start this process early as Trudy had been diagnosed at birth and this gave us access to help from numerous charities. A Family Support Officer sat with us while we tried to remember what life was like before we had Trudy and how much it had changed. We had done so much work ourselves on accepting her diagnosis that it felt like a backwards step to even consider a ‘sliding doors’ version of our life now. How different would it have been if we hadn’t had Trudy, or if she hadn’t had Down’s Syndrome? Nobody knows the answer to that question, but we had to put some version of it in the form.
Forms, form and more forms. We’ve had all manner of forms, from detailed descriptions of Trudy to one small box to summarise the entire developmental impact of Down’s Syndrome. I think I just put an asterix and wrote ‘see end of form’. I then proceeded to outline the implications of that extra 21st chromosome for our daughter, absolutely refusing to write ‘Trudy has Down’s Syndrome’, as that doesn’t mean a thing.
We have had to fill out forms for access to support, which means using negative language around Trudy’s ‘condition’, but also for access to so-called ‘normal’ classes, which means focusing on Trudy’s strengths and ability to integrate. It’s a linguistic minefield.
Trudy has just started a dance class and there is no form for that. This could either be an unnecessary evil that has been done away with for being of no benefit, or the tell-tale signs of a confident practitioner who deals with the child first and the information later, someone who deals in (the buzz-word in education right now) ‘relationships’. The form for gymnastics, however, put us back 6 months because we had to get a letter from Trudy’s Paediatrician to say she was fit to participate in gym (at the age of 3).
On the one hand, forms can get us what we are entitled to, as well as give people vital information about what support our children might need. On the other, they can really take away from the child’s innate capacity to form their own interactions and relationships with somebody else, as well as the professional’s ability to judge and assess a child’s need without recourse to paperwork.
I recently accessed an online course by ‘The Inclusion Academy‘ on IEPs for parents and professionals with Genia Stephen and Erin Sheldon, practitioners and authors of ‘Inclusion’ in the States. They were discussing the importance and role of the IEP (Individual Education Plan) in assessment of a pupil’s needs. In Scotland, the IEP is not legislation but an example of good practice. I wondered whether this carries too much of a risk as there is no legal obligation to produce this document and no standard practice of what this document should include. Genia answered my dilemma by reminding me that there can be excellent practice and no or little evidence of paperwork, as well as the best paperwork but no or little evidence of good practice.
I know which one I would rather see.
Trudy 