Ageing with dignity and disability
A generation of Irish people with intellectual disabilities is on the threshold of old age. What can society do to ensure that they and their carers get the support they need to enjoy the experience?
FOR THE FIRST time in Ireland, a generation of people with intellectual disabilities is living into old age. And while living longer is in itself something to celebrate, a recent report, Growing Older with an Intellectual Disability in Ireland, highlights higher levels of physical, mental and social-health problems among this group of people, problems that will be exacerbated by age.
“As a society, we are poorly prepared to support the ageing of people with intellectual disability,” says Prof Mary McCarron, dean of the faculty of health sciences at Trinity College Dublin and lead researcher of the study, which is the first of its kind in Ireland. “The aim of this study – a supplementary report to The Irish Longitudinal Study on Ageing– is to understand the key influences of successful ageing for this group of people, what puts them at risk of poor health in old age, and what helps them live healthy and well.”
McCarron suggests that the current practice of moving people with intellectual disabilities out of institutions into community houses will only work well if genuine community involvement is there. “We are rightly looking at ways to move more people with intellectual disabilities from institutions to the community, but placement alone is not a panacea. Too many people with intellectual disability were not ‘living’ in and enjoying the community,” she says. “Our study found a high level of dependence on paid care-givers among people with intellectual disabilities living in all settings. There is a need to re-engage with families and build natural supports.”
However, the study also found that most people in this group had hobbies, participated in organised activities and went on holidays.
Most of the 750 people with intellectual disabilities interviewed told the researchers that they were happy with their lives, yet more than 50 per cent also said that they sometimes felt lonely.
Training people with intellectual disabilities in the safe use of social media could be one way of improving contact between family and friends. The study found that more than three-quarters of adults with intellectual disabilities over the age of 40 had never used social media, such as Facebook, texting or email, to contact family or friends. Less than 60 per cent used the telephone.
Carers for those with intellectual disabilities, however, are cautious about the use of social media, being more aware of how easily vulnerability can be exposed. “My sister Margaret had a mobile phone, but we had to take it from her because of the inappropriate texts she got when she gave her number to too many people,” says Sandra Flanagan (see panel). “She also had Facebook for about a year, which we tried to monitor carefully, but, even there, people got access to her account who didn’t realise the extent of her disability. It is safer for her not to have a mobile phone or Facebook.”
Over-40s with intellectual disabilities have higher levels of chronic illness than the general population of the same age group. Six out of 10 are overweight or obese, one in three has high cholesterol, and diabetes is a growing problem. They also have higher number of falls and hip fractures than those of a similar age in the general population. The need for screening for conditions such as osteoporosis was also highlighted in the study.
High levels of mental-health problems were also identified. Almost one in five of the group studied had been diagnosed with depression; the rate in the general population is one in 20. “Some of these health problems are preventable,” says McCarron. “We found that contact with family declines with age, and particularly so for those with severe or moderate intellectual disability. Social connectedness and family ties are more critical determinants of mental health than access to medical care. What we need to do is build natural networks of support for this group as they age.”
'Somewhere to go every day, a place she could think, work and be valued'
MARGARET WILTON is known as Little Maggie in her home town of Drogheda, Co Louth. It’s a friendly term that mostly refers to her diminutive stature, but it also gives a picture of how well liked she is among the people she has known all her life.
The ninth in a family of 12 children, Wilton was born with an intellectual disability in 1965. She attended St Ita’s Special School in Drogheda from the age of seven to 18. “I loved school,” she says as we sit chatting with her and her sister, Sandra Flanagan.
After school, she worked at packing boxes in a sheltered workshop run by the Order of Malta. Later she trained to be a confectioner and worked in the Old Gate Bakery, which the Order of Malta also ran. “I loved it like school, but the bakery was really tough. I worked from 6.30am to 3pm, Monday to Friday.”
Just before the bakery closed down in 2001, Wilton was offered a cleaning job in another Order of Malta centre in Drogheda. “They didn’t want a person with a disability to go home and do nothing,” she says.
This job was less onerous and, after her cleaning duties, Wilton could take part in classes in Maths, English and computer studies. Later she became a student at Drogheda Institute of Further Education and had plans to continue her studies at Dundalk Institute of Technology.
She lived with her mother and older sister, who also has an intellectual disability, in the family home. However, when their mother died of cancer in 2005, another sister, Sandra, became Wilton’s carer. “My mother had already asked me to be Maggie’s carer. I suppose she trusted that I was able to do it,” says Flanagan.
However, after their mother’s death, Flanagan realised that taking public transport to and from Dundalk would be too difficult for Wilton, which meant that she was at home without a job or classes for about a year.
“This was a hard time for us all,” says Flanagan. “I felt I had no one to talk to about Maggie’s welfare and there were no extra supports in place for her to the make the transition to go to a big third-level campus in Dundalk.”
After much effort, Flanagan got Wilton voluntary work, which later became paid work, at Drogheda Community Services Centre for the Elderly. “I wouldn’t be able to work myself if Maggie didn’t have somewhere to go every day, a place where she could think, work and be valued,” says Flanagan.
“I still work there five days a week,” says Wilton, who is clearly content with her job.
The rest of the time she spends at home with her older sister, and visiting Flanagan, who helps them manage their money, do their shopping and plan their meals. She also has a Jack Russell terrier, Twink, that she brings for walks.
Wilton is one of 750 over-40s with intellectual disabilities who was interviewed for the study. Like many of those interviewed, she is happy with her life and relatively unaware of the challenges ageing will bring. However, Flanagan, an adult-education trainer and mother of two grown-up children, is clearly stretched in her role as carer to both her sisters.
“I am very concerned about their safety and welfare,” she says. “They are both very sociable, but not everyone is out there to protect people who need protection. Even the ‘protectors’ in our society – gardaí and doctors, for example – are not aware of the huge differences between people’s intellectual capacities.
“After my mother died I found unused prescriptions and medication in the house. We destroyed everything, and now we draw up a food plan for dietary needs. Maggie hasn’t had a visit to the doctor since.
“I feel like I’m on my own with my sisters. I’d like to meet the people who are encouraging independence, inclusion and equality, and see what they are basing it on.
“It would be more realistic if the people who have knowledge and experience of disability were the ones who are training people. I haven’t seen that yet.”
EducationOne-third of those interviewed had no formal education and about half had primary education. Only three of the 750 interviewees had completed secondary school.
Everyday lifeThe vast majority of those interviewed were unemployed but participated in activities at day or residential centres. More than 60 per cent had access to 24-hour support.
HealthSix in 10 were overweight or obese. One in three had high cholesterol. One in five had been diagnosed with depression. And one in three said that they were often troubled by pain. Nine out of 10 were taking at least one prescription medicine.
Contact with familyThe majority had contact with family. However, one in four met their family once a year or less. Contact seemed to decline with age and was less regular for those with severe to profound intellectual disabilities.