WHO really cares about the future of our children and young adults who have profound learning disabilities as a consequence of severe epilepsy?
In Scotland, there are approximately 1,000 children and young adults under the age of 25 whose cognitive abilities are limited by the early onset of complex epilepsy in infancy. Most of these young people will have lifelong learning disabilities that will prevent them ever living independently, requiring round- the-clock care for the rest of their lives.
In childhood, naturally parents to want to care for their child with epilepsy. But as the complexities of the condition emerge and the damage of those early life seizures take their toll, parents begin to struggle. The family life they had hoped to enjoy as they raise their child (or children) slowly slips away from them.
It is impossible to describe fully family life with a severely epileptic child, except to say that the vigil is held for 24 hours of every day of every year for all family members. Even the best-laid plans often come unstuck with expectations shattered as normal life eludes them due to the unrelenting pressure.
The early years are about the management of major health issues. Strangely, the NHS becomes a familiar friend. Challenges with education follow as learning difficulties emerge, and getting a developmentally delayed child with epilepsy into the right school is often impossible – indeed, even a postcode lottery.
Latterly, social care becomes the focus as families come to recognise and accept they can no longer cope on their own and that some form of respite and support is required if their child’s needs are to be met and the health and well-being of other family members is to be preserved. None of this comes knocking at the door. As if life is not hard enough, it is an eternal fight to secure the care and support required.
The Scottish Government is attempting to address all of these things in their draft legislation Getting it Right for Every Child and in their proposals for the Integration of Health and Social Care. There is even a draft proposal on the issues of transition for children with lifelong illnesses from child services to adult care.
Whilst these proposals are worthy and well-intentioned (I have read them all cover to cover), there is a noticeable absence of reference to our children. Each will grow into adults who will never live independently, who will never be “good contributing citizens” and who will always be dependent on the state for their care.
Time and time again, direct payments are mentioned as the answer to all problems. Under a draft Scottish Government Bill, this will become Self-Directed Support (SDS), enabling the individual’s care budget to be delivered on a “pick and mix basis” by the local council, or a provider of choice, with direct payments being made for parents and carers to source their own support, if preferred – or if a suitable care package cannot be provided, which is more often the reality for children and young adults profoundly damaged by epilepsy.
The real question is: who will actually deliver the care and when the council cannot provide a suitable care package and direct payments are the only option, will the amount of direct payments keep up with the care requirements of these children and young adults whose needs will become ever more burdensome and costly? My guess is it will be family because direct payments will, in the end, not afford the real level of professional care that is needed.
Our 16-year-old son Muir is profoundly damaged by a severe form of epilepsy called Dravet Syndrome and will forever be locked in childhood. But who cares about Muir’s future other than us, Muir’s parents? And who will care when we are gone? Who will provide the lifelong care he should have in order to thrive like other people – will it be us too or does the Scottish Government care enough to share the burden? Will they help us ensure that Muir is not parked and forgotten about but lives a happy and fulfilled life? Does the Government even know or understand the level of care that is required for a young adult like Muir? I think not.
So for those families like us who can see the writing on the wall, the Scottish Government must begin to look at the need for the highest quality institutional care to sit alongside the option of direct payments. If not, ministers will be underwriting an empty future for profoundly learning disabled children and their families in Scotland who will be destined to exist behind closed doors, forgotten about, left to grow old together until somebody dies, at which point the care is delivered – but in crisis. «
Ann Maxwell is founder and chairman of the Muir Maxwell Trust epilepsy charity