CHILDREN and young adults with profound learning disabilities are being increasingly marginalised and we have to ask ourselves if we are really prepared to let this happen in our society.
The Children and Young Person’s Bill, currently going through parliament, sets out the government’s aim to support all families, including children in care or with special needs.
It is prompting debate, but so far there has been little recognition for those whose needs include 24/7 health care and for whom there is no prospect of an independent existence.
If the government’s agenda is truly for Getting it Right for Every Child (GIRFEC), then they too deserve to have the chance of a fulfilling life.
The bill is designed to complement both education legislation for additional support for learning and the principles of government agenda for GIRFEC.
Yet it seems that government, while approaching the debate with vision and good intention, is ignoring the unintended consequences of its proposals.
Many have raised concerns about the absence of statutory obligations on the part of local authorities.
The absurdly low level of funding for respite care and the reality of how services are delivered compromise the ambitions of the bill.
The truth is that the profoundly learning disabled as a group doesn’t fit in easily.
This group doesn’t fit into the current drive for inclusion or care in the home as their needs can go far beyond the capacity of the most caring of parents or teachers.
It doesn’t fit because, if we dare to say it, their claims on services are greater than most and therefore unwanted in times of tightening budgets and over-stretched departments.
But, because they don’t fit, perhaps it is time to stop trying to shoehorn them into inappropriate policy agendas and accept that this group exists, that it needs understanding and that it requires separate funding.
As the bill continues its passage through parliament, I can only hope that, rather than push their needs into the margins, someone is brave enough to open up the debate to include those with very profound learning disabilities.
• Ann Maxwell is the founder of the Muir Maxwell Trust