‘It breaks my heart that so much has been taken from him’
Having a child with severe disabilities is challenging, but endless bureaucracy makes it so much worse, says Sue Beeby
Iwas surprisingly calm when they told me my nine-day-old son was likely to be severely disabled. Sat in a sterile room with the doctors who had quickly assessed the clear and significant brain damage on his MRI scan, I only thought about the huge amount of love my husband and I and our two other boys had for our new baby. With a shock of dark hair and dark eyes he was a beautiful boy and had shown in his first few days what a fighter he would be.
It felt like we could conquer anything. Just 10 days before, I had been casually heading towards my due date after a third, relatively uneventful, pregnancy. Then one evening, my waters broke and the umbilical cord that had unusually been sitting beneath the baby, prolapsed – depriving our son of the oxygen he needed to keep him alive, keep him safe.
Living in a rural town we were at least 20 minutes from the hospital – by the time the ambulance arrived, took us in and an emergency caesarean section under anaesthetic was conducted, it had been almost an hour. After an hour without enough oxygen our son was born floppy and unresponsive. By the time I had woken, my baby was already being prepped for the move to a specialist hospital, where he would be cooled for 72 hours to try to limit the damage to his brain.
The following week felt like a lifetime. When we were told that, despite all their efforts, our baby boy would be severely disabled, we left the room – both of us quiet, poised – and went back to Jasper’s bedside. It was only later that night that the enormity of the news finally hit me.
Dozing in a bed in the hospital rooms provided by the Sick Children’s Trust, I woke with a start. I realised that we had no idea how to raise a disabled child. What if he needed constant 24-hour care? Would he ever be able to walk or talk or feed himself? We had no idea how to provide the care he needed or of the challenges that lay ahead. We didn’t have a clue how to get support. How would his care demands ever fit into our lives, which were already a patchwork of school, childcare and work?
Friends and relatives’ faces reflected my concerns. With good intentions they asked us how could we cope? I didn’t know. It felt like we were alone. But of course, I was wrong. Thousands of families raise disabled children. Families like ours juggle work, childcare, school, appointments and life goes on.
I was amazed at how the healthcare system swept in to help. Speech and language therapists visited us in intensive care to advise us on feeding, we were referred to a physio and occupational therapist before we left hospital when he was six weeks old.
Community nurses supported us and then trained us to insert the nasogastric tube Jasper needed to feed. I thought breastfeeding with my other two children was hard but here I was now inserting a feeding tube into my newborn’s stomach via his nose.
There’s no doubt it tested us to our limits at times but it really felt that the system was set up to help us do it. Help us succeed. But then came the next stage. I took six months’ maternity leave from my job as head of external communications at HS2 and had always expected to return to work, yet this was to present the first of many challenges.
As my leave drew to a close we began to think about childcare. Our other two boys had gone to nursery and we desperately wanted the same for our youngest. I nervously approached our nursery; his tube feeds meant he needed additional care and his physical disabilities were so severe that he would need continuous support to do even the most basic things – like reaching for toys, sitting up or even clapping his hands.
But once again I was surprised by the response. We weren’t the first to have a disabled child and, of course, they would love to have him. They talked at length about other disabled children at the nursery and how the environment had supported and aided their development. We just needed to apply to our council for an education, health and care plan (EHCP) so we could access funding for one-to-one care.
And so the process began. Evidence from our community nursing team that his feeds needed a trained professional who could constantly monitor him in case the tube slipped into his lungs. Evidence from our physio that he wasn’t safe without constant support and needed positioning to enable him to engage. Evidence from our paediatrician and speech and language therapist that his brain damage meant developmental delay was certain, the inability to speak very likely. It took months.
Weeks later we received our reply. Jasper wouldn’t get an EHCP. He wouldn’t even be assessed for an EHCP. Our application was missing six months of evidence of his educational needs, even though he was only seven months old at the time. Evidence that could be provided by a nursery – but we couldn’t get into a nursery without an EHCP. It was Catch 22.
EHCPS are designed for those aged 0-25 but assessments won’t be carried out without months of evidence – effectively excluding babies like Jasper. No nursery will take a child with additional needs if they can’t guarantee their safety. Without one-to-one care Jasper wouldn’t be safe. I put my return to work on hold and we scrabbled around for childcare. We settled on a nanny who was willing to train to feed and handle Jasper and who we thought could best support his needs.
Jasper is now nearly 18 months old and the fight for support carries on. He can’t sit up, roll over, reach for toys, feed himself or communicate. Last week our council’s Early Support team contacted us, not to offer one-to-one care for Jasper, or an assessment, but about the chance to attend a special needs children’s group for one hour, once a week for the next four weeks, which is tough as it takes place while we’re at work.
As a family, with the help of our nanny and childminder, we do the best that we can for him but without the support of trained educational professionals who know what he is missing out on. It breaks my heart that on top of everything else that he has lost, the chance to play with and learn from children his own age has been taken from him too because of a Kafkaesque-level of bureaucracy.
Ofsted recently said that “something is truly wrong when parents repeatedly tell inspectors that they have to fight to get the help and support their child needs”. Their report found that EHC plans have not been successfully implemented and, as a result, the gap in outcomes for children with special needs only grows. It also said the identification of special needs is “weak” and those who fail to meet the threshold for an EHCP have poor outcomes.
And they are right. This is a scandal. Being told your child has additional needs is difficult enough. Being told you have to go it alone keeps you awake at night. Being told you will then have to fight every step of the way – that’s the stuff of nightmares.
‘Something is truly wrong when parents have to fight to get the help their child needs’