CARERS WEEK 13 – 20 June 2011
Every day in Scotland thousands of older family carers in their 60’s, 70’s, 80’s and even 90’s care for their sons and daughters who have a learning disability. These parents have been caring and supporting their sons and daughters at home throughout their lives. Alongside the physical demands of caring 24/7 there is huge mental anguish for these parents as they worry about what will happen when they die, are too infirm to care or an emergency situation arises. This is the first generation of sons and daughters who have a learning disability that will outlive their parents.
Leading learning disability charity ENABLE Scotland is using National Carers Week as a platform to highlight the needs and recognise the efforts of Scotland’s army of older family carers because they say they are “running out of time”.
Mr and Mrs D from North Ayrshire are in their 80’s and care for their daughter who is in her 60’s and has a learning disability. They are very anxious to make plans for the future which will ensure that their daughter is well cared for when we are no longer able to do so.
New estimates, calculated by charity Carers Scotland and the University of Leeds, show the care provided by friends and family members to ill, frail or disabled relatives is now worth a staggering £10.3 billion every year. Carers Scotland also say this figure has risen by over a third since the 2007 estimate, which stood at £7.6 billion.
Lifelong carers are being denied proper support, help to plan the future and peace of mind. ENABLE Scotland believes this is a small ask from a group of people who each save the taxpayer £millions every year.
Many ageing parents do not know what will happen to their sons and daughters who have a learning disability when they are no longer around or able to care. Older family carers are under greater physical and mental pressures because of their age and often the frailty this can bring. Meanwhile they have smaller support networks as parents, partners and friends age and die.
ENABLE Scotland has consulted with older family carers and they have told us they want:
- To know what will happen in an emergency;
- Regular breaks from caring;
- To know how to leave our sons and daughters financially secure;
- To know where our sons and daughters will live once we’ve gone;
- To make sure our sons and daughters will be listened to or will have someone to speak up for them;
- Peace of mind….because we are running out of time.
And to add fuel to the fire carers are anxious about being plunged into even further financial hardship when the Government’s proposed cuts to Disability Living Allowance take effect. This will result in many carers losing their Carers Allowance. Many carers believe this will make unpaid care financially untenable and they may have no other option but to look to residential care for their loved ones. Residential care is much more expensive and is often not the best option for someone who has a learning disability.
The Scottish Consortium for Learning Disability have estimated the number of older parent carers in Scotland looking after an adult with a learning disability. They believe that there are an estimated 6,296 parent carers aged 50 and over and 3,013 parent carers aged 65 and over. 
ENABLE Scotland is campaigning hard for these carers and where possible offering practical support but changes need to be made.
Through Big Lottery funding, ENABLE Scotland was able to launch its Lifelong Carers projects in Dumfries and Galloway and Ayrshire. The project is addressing the needs of older carers, by putting the support in place that they need and helping them plan for the future.
The charity has also embarked on a research project, funded by The Scottish Government, to develop and promote preventative Emergency Planning within the wider context of Carers Assessments.
Peter Scott, Chief Executive of ENABLE Scotland said:
“Caring for your son or daughter who has a learning disability is a lifelong commitment and thousands of families have been caring for over 35 years.
What these carers want more than anything else is peace of mind. They deserve the reassurance of knowing that plans are in place to ensure their son or daughter is properly looked after when they are no longer able to do so”.
Case Studies and pictures can be arranged by contacting Nikki Slowey on 07921657 185 email@example.com
Case Study 1
May, 69, Glasgow, cares at home for her 37 year old son John who has Down’s Syndrome. John currently attends a Day Centre 5 days a week. May fervently hopes that he can continue at his centre particularly into the future when May is no longer here and John will be cared for by his brother. Should John not be able to attend the centre, his brother would not be able to work.
Case Study 2
Mr and Mrs D from North Ayrshire are older carers in their 80’s who care for their daughter who is in her 60’s. They are very anxious to make plans for the future which will ensure that their daughter is well cared for when we are no longer able to do so. As the couple are elderly they now find it more and more difficult to acquire information about what services are available in the local area and how to access them. The Lifelong Carers project in North Ayrshire has been a lifeline to them, helping them to identify services in the area.
Notes to Editors
Figures quoted are from SCLD
 This information is not collected directly from local authorities
 Based on a learning disability population of 27,671; the average of a UK woman bearing a child (29 years); 89% of carers being parents
ENABLE Scotland is Scotland’s leading charity for children and adults who have learning disabilities and their families and carers.
- ENABLE Scotland campaigns for people who have learning disabilities to live full and independent lives.
- ENABLE Scotland is a member-led organisation formed in 1954 by a group of families. Local ENABLE branches are made up of volunteers – mostly people who have a learning disability, their families and carers.
- 1.5 million people in the UK have a learning disability. The most well known learning disability is Down’s Syndrome, although there are many others.
- ENABLE Scotland provides services, information and advice to allow people who have a learning disability to live, work and take part in their communities – living the life they want.
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