How people live with intellectual disability has changed — society must keep up
Paul Alford will now be able to have up to five people in his newly expanded, freshly tiled kitchen. It is all a far cry from the circumstances of the majority of his life. Picture: Barry Cronin
Paul Alford is currently having some home renovations done. Nothing major, you might think, apart from the usual headaches that come with any stab at home improvement.
But for Paul, who has an intellectual disability and lives independently in Navan in Co Meath, it is a big deal, a source of pride even.
"When I first got it, it was so small," he says of his apartment. "It's much better now. I’m in the middle off getting new windows as well and it's all coming out of my own pocket."
Now Paul, 59, will be able to have up to five people in his newly expanded, freshly tiled kitchen. It is all a far cry from the circumstances of the majority of his life. Paul started in boarding school at a very young age, attending three in total before working in a nursing home and then entering institutional care in Peamount — a place where he spent 32 and a half years.
Paul remembers toiling in the workshop there and earning a pittance every week. He recalls the bossman ringing through if he was a few minutes late, wondering where he was, and of having little or no influence over what he wanted to do with his life. He remembers railing against it.
When he joined Inclusion Ireland, Paul couldn't read or write, something he swiftly addressed. And it was in his early days at the organsiation that he suddenly took the idea of going on a holiday. To Beijing.
"I was on my lunch break and I was reading the newspaper and saw this article for nine days going to Beijing. It was a coach tour — I just said that would be lovely. I just took out my wallet and credit cards and went on the phone and then I went and phoned the travel department in Dublin. It was paid over the card. I didn’t say anything to the staff [at Peamount] til three or four days days later."
That trip symbolised a breaking away from institutions and congregated settings to a more independent life. Since those early days, Paul has secured compensation owed to him by the State and, along with a credit union loan, his own apartment.
He commutes to work, has an active social life, and is evidently enjoying himself. There is a sense of making up for lost time, what with the numerous trips overseas, writing a book, appearing at conferences. It is life as it should be lived.
Which, unfortunately, is not always the case for everyone with a disability. Recent newspaper stories have highlighted the increasing difficulties faced by ageing parents and carers who are worried about what comes later for their loved one.
Carers continue to look after their loved ones with inadequate respite and other services. The issues over availability of suitable spaces and delivering meaningful supports come alongside growing life expectancy and longstanding pledges to remove people from congregated settings and to instead have people living engaged, active lives in their communities.
Back in late 2015, Prof Mary McCarron was able to outline the progress when it came to life expectancy and health outcomes for people with an intellectual disability.
"Life expectancy for those with Down syndrome in the 1930s was nine years. Today it is 50s, 60s, 70s and beyond."
More recent waves of the IDS TILDA study, which researches ageing in Ireland among people with an intellectual disability aged 40 and over, have charted other trends as the original cohort got older.
But now Prof McCarron can see some issues that have never been adequately addressed and others looming in the near future.
"We have no plan," she says.
Prof McCarron and her team are currently analysing data from Wave 5 of the IDS TILDA study, with the findings due to be published in November.
"Certainly it is a success story," she says of the increased life expectancy of people with a disability, "but for me there is a lack of preparedness in addressing the healthcare needs of a population at that age. Many are presenting with healthcare needs at an earlier age, but are also presenting higher levels of other physical and mental health issues, comorbidity — there is a cumulative complexity for this population."
There was a noted increase in chronic health conditions between Wave 1 and Wave 3 of the IDS TILDA study, while 35.5% of people with Down syndrome had a doctor’s diagnosis of dementia, up from 15% in Wave 1. Emotional, nervous, and psychiatric conditions were also prevalent by Wave 3, with almost 52% of participants reporting having received a doctor’s diagnosis.
According to Prof McCarron, the mental and physical illnesses that can afflict any of us as we age are also likely to be a factor in the lives of people with an intellectual disability, but will likely show themselves at an earlier stage.
"The gains that we have seen in the general population [regarding health and life expectancy], we don't see them to same extent in people with an intellectual disability — they are still dying 20 years younger than people in the general population," Prof McCarron says.
She refers to "huge gaps and inequities" in provision of healthcare, and large numbers of people living with ageing parents — just like Edward Moore and his mother, Angelina, who recently told of her worry regarding the future care of her son.
“He is terrified something is going to happen to me,” Angelina told this newspaper.
“Every day I wake up and it actually is terrible to be afraid to die. It is the first thing on my mind every morning and I am glad I am alive and if anything happened to me, I feel I will have failed him and the system will have failed him, and that is an awful way for a lone parent to feel.”
Such fears are not news to National Advocacy Service (NAS) national manager Joanne Condon. She notes that the most recent NAS annual report had housing as the second most commonly raised issue, and residential and healthcare setting issues as the third most commonly raised issue.
She says worries outlined by ageing parents and relatives are increasingly prevalent.
2"You really have to be in crisis to have a plan put in place," Joanne says.
The system put in place at the moment is very crisis driven — resource difficulties, accommodation difficulties.
Prof McCarron notes the large number of carers aged over 75 and over 85. The reported recently that the number of people waiting to enter adult residential care has risen sharply over the last four years, with 1,296 people with disabilities on a waiting list — a 67% increase compared to 2019, when 776 adults were waiting to access residential care.
There has been a surge in the number of people applying for Carer's Allowance, with the number of applications rising by more than 3,000 last year to almost 23,000.
It all means that despite all the efforts to move people out of old-style congregated settings, some will now face the prospect of moving back into a similar environment, most likely nursing homes.
For Prof McCarron, such admissions are "often unplanned and crisis admissions". A person with an intellectual disability can lose a parent and carer, but so much more.
"They lose everything," Prof McCarron says. "They lose their connections, they lose their friendships, they lose their community. There are multiple losses. I worry and I feel we will have done a disservice to people [with an intellectual disability] who are ageing. I think we should learn from the history of our past. We have no plan for that, we have no plan. It is a huge tragedy for people with an intellectual disability if that happens."
According to Joanne Condon: "The way we categorise that issue is very often these people are not given the right to age in place [eg in their own house]. Their right to age in that place, the same way you or I would, may not be open to someone with a disability. The automatic response is 'let's move them to a nursing home'."
Even this change — in the words of Prof McCarron a form of re-institutionalisation, especially for those who may already have left a congregated setting elsewhere — can have negative emotional and health impacts. Joanne Condon points out that a familiarity with your surroundings is a protective factor against dementia — something that is lost when you are moved to a new place later in life.
All this is not to forget the still significant number of people — including some aged just in their twenties, who themselves may have young children — already placed in a nursing home, and in a setting which may not be appropriate for them.
According to the Ombudsman's Report on the issue, titled Wasted Lives, in June 2020 there were 1,320 people under 65 supported by the Nursing Homes Support Scheme (NHSS). The report highlighted concerns over quality of life, financial difficulties, a lack of informed consent and noted that in some cases it is clearly not the placement of preference for the people there.
According to Joanne Condon, the issue has not gone away. "We had 50 open cases of those under 65 living in nursing homes and had another 26 on waiting list for that in March," she says. "Unfortunately the option still exists."
NAS is assisting the HSE in conducting a fresh survey to ascertain the current level of such placements, with the Wasted Lives report stressing that the NHSS figures "does not provide a full picture" and that there was also a lack of a specific policy and strategy to address the issue.
What's more, Ms Condon points out that despite the welcome moves to have people live more independent lives, in the community and with the correct supports, around 25% of residential places offered are still within congregated settings. That leads to issues typically raised in inspection reports from the Health Information and Quality Authority (HIQA) about peer-to-peer abuse and verbal or even sometimes physical aggression.
Of course, that is not true for many residents and many centres, but in the teeth of a national accommodation crisis, it comes as no surprise that the overall provision of housing stock could also be contributing to longer waiting times.
"It is very hard to get housing," Prof McCarron says, adding that the current housing crisis "has a knock-on effect for disability organisations". "The types of property we are looking for are very difficult to get," she says.
Otherwise, she says, we will see the older carers fretting about the future joined by an already-growing number of "sandwich generation" carers — people in mid-life who may be looking after their children and their parents and, increasingly a relative with an intellectual disability.
According to Prof McCarron, "many of these people we have interviewed are completely overwhelmed, have bad health themselves, it has had a major impact, but there is an unconditional love.”
Inclusion Ireland cited a number of reports published in recent years which looked closely at the issues impacting people with disabilities, including The Cost of Disability Report, The Disability Capacity Review, and The Housing Strategy for Disabled People 2022-2027. But it said just one implementation plan has been published — The Housing Implementation Plan.
"Without a plan we lurch from crisis to crisis, when what we need is to have creative and rights-based supports in place for people," the organisation said.
Joanne Condon believes a cost of disability payment is required, given that the disability allowance has "not kept pace with inflation", as well as individualised supports and measures to address what she called a "crisis in health and social care staffing", meaning many people, including those who are non-verbal, being cared for in different facilities where there is a "huge turnover in staff".
The picture isn't entirely bleak. Prof McCarron says "great progress" has been made in some areas, including that people with a disability are living longer, speaking up for themselves and becoming a more visible part of society. Joanne Condon agrees, but says there does need to be an attitudinal shift in society, away from seeing people with disabilities primarily as people who must be helped, and instead to people who can be assisted to help themselves.
Both agree that recent changes to capacity legislation and the introduction of the Decision Support Service (DSS) will make a significant difference to people. Paul Alford is one of the DSS Champions, working with the Mental Health Commission to promote the service and steadfast in his belief that it can help others to follow his lead.
And yet, and yet. Prof McCarron says we have the best data in the world regarding how people with an intellectual disability are ageing, and the challenges that provides. But she questions how we are going to meet those challenges.
"Despite all the aspiration we have got to put in resources and action plans behind these aspirations," she says.
"People with ID and their families have rights and they deserve a life like everyone else."
According to Emer O’Shea, a community engagement manager who works with Paul at Inclusion Ireland, one of the major advantages in Paul's life is having a GP who is willing to take the time to listen and then explain any treatments.
"One of the biggest things is general is listening to a patient themselves and knowing that he knows his own body," she says, adding that this more comprehensive approach is "a big contributing factor" in continued good health.
As Paul tells it, around the time he moved to Navan his interaction with his then-doctor was far less successful, to the point where he had to request a change of GP. Since then, he says, he has had a fantastic relationship with two GPs, including his current doctor. "He listened to me and took on board what I wanted," he says.
A longer life, a healthier life, one in which adversity can be met head-on and dealt with — this is the aim. In October Paul will mark his 60th birthday with another trip away, this time to Stockholm, accompanied by some family members. His previous big birthdays were all celebrated at the Copper Pub bar in Ennis, where he had a fine time — but this is more in line with his broader horizons.
Paul says he is "concerned" about the prospect of people who, like him, have spent years in places they did not necessarily want to be, and the prospect that ill health or other factors could put them back there. But he is choosing to think positive.
"My hope is to still work until I am about 70," he says when asked about his future plans. "And then the other thing is to still be living in my own home." Revamped kitchen and all.
For more information about the Decision Support Service, see decisionsupportservice.ie.
- If you are affected by any of the issues raised in this article, please click here for a list of support services.
