Our son, and many like him, will suffer acutely from the cuts being proposed by Oxfordshire County Council.
Our son, let’s call him Ian, is eleven. Oxfordshire County Council, our local authority, has proposed a raft of front-line service cuts among which are three in particular I'd like to discuss. Here’s how these cuts would impact on Ian and children like him.
Back in 2007, when Ian was three, my husband, myself, and Ian’s nursery were worried about his physical and social development. I took him to our GP who told us to ‘play football in the park a bit more with him’.
Still worried, my husband and I didn’t know what services Ian needed or how to access them. The nursery brought in an Early Years Special Needs Inclusion Teacher (EYSENIT) to observe Ian. The EYSENIT referred us to a physiotherapist and to the paediatric service at the local hospital. Because of her intervention, Ian got a quick diagnosis: he had the severe, progressive, life shortening paralysing condition Duchenne Muscular Dystrophy (DMD). With a diagnosis Ian was able to access critically important drugs and therapies, and because that happened early enough, Ian is still walking, which in turn extends his life expectancy and reduces a host of costly complications.
Early intervention is critical to the life chances of children with special educational needs and disabilities. Cuts to the EYSENIT service will have a devastating impact on lives and will mean spending more money in the long term.
Ian can’t access the kind of clubs, outings, visits and sleepovers at friends’ houses usual for mainstream eleven year olds, because of his physical and learning disabilities. Sociable, imaginative, creative, with a lively interest in everything and a love of being out and about in the world, he also has confrontational obsessive compulsive behaviour and frequent ‘melt-downs’, language and communication difficulties, attention deficit, is vulnerable to falling and breaking bones (which would mean no longer walking), and relies on his carers for numberless small daily tasks such as support to get up from the toilet and picking things up from the floor.
As his parents we cope with this and with the stress of watching the progressive loss of his mobility and arm and hand strength. And DMD is complex: in any given week we deal with calls, emails, or appointments with up to sixteen different specialists.
Without short break care, the only respite each of us gets as parents is provided by the other, with little time to spend as a couple away from care work, and we juggle this care work with earning a living. Short break care is a necessity for families like ours, both for our son’s independence and the family’s sanity. Nervous breakdown, unemployment, marital breakdown, and child abuse are real risks when you cut short break care. Having no respite would put impossible pressure on us as a family – with a devastating impact on our lives and a higher financial cost to services in the long term.
The only place in Oxford that we have found where Ian can take part in mainstream activities for young people is the Pegasus Theatre. At the Pegasus he is supported, and his strengths are recognised and valued. The theatre is facing the loss of all the local authority funding it gets for its core work with young people.
Inclusion has a cost. The Pegasus is able to include young people with special educational needs and disabilities because: it has highly trained quality staff with the skills to run inclusive activities (sorry, but well-meaning volunteers don't manage inclusion); it runs small group activities which offer the calmness and attention needed for all to contribute; and it provides enablers to support children with special educational needs and disabilities positively.
Some might ask why public money should be spent on including kids like Ian. There are two reasons. Firstly, Ian has just as much right as any other young person to self-development and self-esteem as a contributing member of society. Secondly, the Pegasus is a working example for all the young people who use it of social inclusion and respect. These values are crucial to a civilised society. How can young people learn them if places that teach them get cut?
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