Linda spoke in the debate on 28 October:
I want to talk about a specific element of caring…: the thousands of older people who continue to care in their own homes for adult sons and daughters with a learning disability. The figures suggest that approximately 20 per cent of people with learning disabilities live in the family home and are cared for by family members over the age of 65. In the document that we are debating today, the profile of carers section notes that
“For those undertaking a caring role within the household, over 70% of carers have been providing care for over 5 years”.
The reality is that, within that 70 per cent, some will have been caring for those they love with learning difficulties for between 30 and 50 years—indeed, in some cases, towards 60 years. That is a lifetime of devotion, commitment and hard work.
In my area, the Murray Owen Carers Group includes such carers with a lifetime’s experience of all these issues. Two of the members are, of course, Madge Clark and Jeanette Kelly, who many members know for their work with Enable Scotland and their awareness-raising petition to the Parliament’s Public Petitions Committee in 2004.
That work has made it clear that this group of parent carers has specific and unique needs that are being neither recognised nor supported properly at present. As Enable Scotland noted:
“This is a generation of older carers who have a lifelong responsibility for looking after sons and daughters.”
Great physical and mental pressure is involved in doing that. Enable Scotland goes on to say that, “This is the first generation of parents of people who have learning disabilities whose sons and daughters will outlive them.”
Those words describe the fear and anxiety about what will happen in future. Older family carers have little peace of mind as they continue to care for their adult relatives.
I draw members’ attention to motion S3M-7086, which I drew up a couple of months ago. Although it is in my name, it was jointly developed by me, Johann Lamont and Hugh O’Donnell. The motion
“welcomes the Older Families Charter launched by Enable Scotland, Quarriers, Edinburgh Development Group and the Learning Disability Alliance Scotland”.
The charter for change
“outlines 5 simple steps that can be taken to make life easier for this group of people and to plan for the long term needs of older carers and the needs of those that they care for.”
First, the charter states:
“Local government should collect accurate information on the numbers, needs and location of older carers and adults with learning disabilities living in the family home”.
That is the way to get good planning. Secondly,
“Every adult with a learning disability living with an older carer should be able to have a person-centred plan that supports them in leading full lives, making and keeping friends and keeping in touch with their families if they leave home.”
“In each local authority area there should be a dedicated officer for older families to provide local information, support access to services, identify their needs and plan for how they will change over time.”
“Every adult with a learning disability living with an older carer should be able to have an Individual Emergency Plan which identifies what could be done in specific crisis situations.”
Fifthly, on the subject of advocacy services, which Mary Scanlon mentioned earlier, the charter states:
“Every family with older carers across Scotland should have the opportunity to access independent advocacy services.”
Some local authorities are already taking some of those steps. In fact, thanks to the work of the Murray Owen centre and groups such as that across South Lanarkshire, and of course the commitment of many officers in South Lanarkshire Council, it is already meeting the charter in theory, but it is continuously striving to improve its practice. I mention the difference between theory and practice deliberately. Often, the theories are good and we can tick the boxes and say, “Yes, we are doing fine,” but it is the practice that matters. It is the quality underneath the theory that is important, so it should be continually monitored and assessed, and people should be listened to. The strategy states that carers should be
“equal partners in the planning … of … support.”
That is essential, as is carers being supported “in a personalised way”.
It seems to me that the charter for change is little to ask. I hope that all local authorities will sign up to it and that our Government will endorse it as part of its own carers charter.