Open letter to Alex Neil MSP, Cabinet secretary for health and wellbeing
A mark of a compassionate society is how it treats those most at risk, and we believe the Scottish Government has an opportunity, with the Children and Young Persons (Scotland) and Public Bodies (Joint Working) (Scotland) Bills, to make a deep and lasting impact on the lives of vulnerable children and young adults who need our care and protection.
However, while the Scottish Government’s proposals in these bills are worthy and well intentioned, there is a noticeable absence of reference to profoundly learning disabled children, our sons and daughters. This group clearly falls within the bills’ remit but the extensive needs and extreme nature of the lifelong care, consideration and treatment required by them is conspicuous in its absence.
In particular, there is an emphasis on care in the community for those with disabilities, with self-directed payments heralded as some kind of silver bullet. While this clearly has its place, it fails to recognise the needs of those with complex learning and medical conditions.
Some of these children and young people cannot always live at home. For them to live fulfilled lives, they need round-the-clock specialist care.
Each will grow up but, unlike the majority of their peers, they will never live independently in adulthood, they will never be contributing citizens and they will always be dependent on the state for their care.
Fate has underwritten their ongoing dependence.
Though existing residential provision is of good quality, there’s hardly any of it and what does exist is far away from families. This is a crucial deficiency that needs to be addressed going forward. For many extremely vulnerable young adults with profound learning disabilities, there is currently no suitable residential care in Scotland.
As parents, we naturally want to care for our children, but as the complexities of their conditions emerge, the family life we hoped to enjoy slowly slips away.
No parent wants to fail their child, but we are faced with the agonising reality that we cannot give them the long-term care they need. Unless something is done to establish good quality long-term residential care, our fear is that the profoundly disabled will be forced to live unseen behind closed doors, with their families who struggle to cope – or live alone with endless visiting carers, without dignity, continuity or stimulation.
The Scottish Government must commit to do more to help these children and young people. As it considers its policy and legislation for “Getting it right for every child”, we urge ministers to put in place the right long-term residential care provision for the profoundly learning disabled to ensure that their needs and the needs of their families are met throughout their lifetime.
Our children and young adults may be in a minority but theirs is the greatest need for society’s support and care.
Muir Maxwell Trust
(Dr) Clara Russell
(Dr) David Morrison
Consultant paediatric neurologist
Head of College of Medicine & Veterinary Medicine and chief executive of the Medical Research Council