The new government will prioritise people with mental health issues and disabilities, according to party leaders. So what do people in those groups want from their government?
If Fine Gael is serious about giving priority to disability issues, it can start by giving financial help, say disabled people
UNLIKE PREVIOUS elections, this campaign was characterised by surprisingly few sweeping promises, so the pledge by Enda Kenny and Eamon Gilmore to prioritise disability issues made some viewers of the Prime Timeleader's debate sit up and take notice. If they are serious about this, what simple steps could the incoming government take to improve the lives of people with disabilities?
Restoring the €8 cut in the disability allowance is the first thing mentioned by everyone who spoke to The Irish Times. The cut is seen as a particularly mean gesture affecting a vulnerable group with little political clout. Pádraig Keogh, who has spina bifida and hydrocephalus, echoes the views of many when he says the next government should immediately reverse the cut.
“It is disgraceful, especially when you see that the old age pension was not touched. It doesn’t make sense,” he says. “The cost of living for a pensioner with no disability is much lower than for a young person with a disability.”
Keogh would also like to see an effort to reduce the bureaucracy associated with applying for entitlements and services. “You just don’t feel the health service is there to help you,” he says.
Polio survivor Ann Pepper agrees the Government doesn’t recognise the extra expense disability brings. Her motorised wheelchair needs to be charged for eight to 12 hours, which adds significantly to her electricity bills. “I used to charge it every night, but now I only go out if I really have to,” she says.
Because of her mobility problems she also feels the cold more; she wears woolly socks and leg warmers under her trousers to save on heating costs.
If the next government is serious about improving the lives of people with disabilities, she says, it would also improve the scheme that provides transport to hospital appointments. She lives in Tallaght and recently had an appointment for a clinic in Raheny. It took two weeks of phone calls to the HSE before she was told that she would be brought to and from the hospital.
“When you get an appointment you are worried that you won’t be able to get the transport. Is it going to turn up on time and is it going to be there to get you home?”
On one occasion an appointment at Beaumont Hospital ran late and the ambulance driver had gone home when she came out. “It was lashing rain and in the terrible weather I had to get a bus from Beaumont into town and then a Luas to Tallaght – and I still had to get home from there in my wheelchair.”
She says she’d love to believe politicians when they say disability is a priority but “it’s very easy for them to make false promises”.
Kiara Lynch, another wheelchair user, is also sceptical. She has Friedreich’s ataxia, a degenerative neurological condition, and has frequently been stranded at bus stops. “It’s appalling, trying to rely on public transport to get around in a wheelchair,” she says.
Not all buses have wheelchair ramps and often they don’t work. “That really kills you, when you’ve waited for a bus that should be wheelchair accessible and the lift is not working.”
She would also like to see the government tackling the provision of wheelchair-accessible facilities in cafes and bars, and the abuse of disabled parking spaces. “If the law was enforced, people without disabilities just would not park in these spaces, but they do it all the time,” she says.
On Prime Time, Gilmore described the €8 reduction in the Blind Persons’ Pension as “scandalous”. It was the second reduction in as many years and was described by the National Council for the Blind as “a petty decision”.
The council’s rehabilitation training centre manager Stuart Lawler, who is blind, says the restoration of the full pension is what most blind people would single out as a priority for an incoming government.
He would also welcome privacy at the ballot box for the visually impaired. Currently, people have to be accompanied by someone who will mark their ballot papers, or to seek help from a polling station official.
The incoming government should fast-track the building of the National Rehabilitation Hospital in Dún Laoghaire, according to Dr Jacinta McElligott, director of the hospital’s spinal injuries programme. This state-of-the-art facility received planning permission in 2008. It should be nearing completion by now, but staff and patients are still stuck with facilities completely unfit for purpose.
This request is seconded by Barbara O’Connell of Acquired Brain Injury Ireland. Neurosurgeons have saved many lives following brain injuries, she says, but the follow-up services are not there. The hospital has fewer than 50 beds for people needing acquired brain injury rehabilitation.
She recalls one mother whose son’s life was saved following a road accident. She spent 11 years pleading for help before he got a place in a residential home. She often asked herself if it would have been better if her son had not survived that day, given the lack of rehabilitation on offer.
The Disability Federation of Ireland’s chief executive John Dolan says it was “groundbreaking” to see disability being singled out as a priority by the party leaders in last week’s debate.
The federation will be watching carefully to ensure that these promises are reflected in the next Programme for Government, he says.
For Andy Heffernan, chief executive of St John of God community services, a charity that works with people who have intellectual disabilities, the new Government should learn from the old one.
“A lot of good work has been completed by the previous Government, and that shouldn’t be set aside,” he says.
Citing a HSE-led report completed last year which sets out a strategy for those with intellectual disability to live in a community setting, Heffernan says implementing its findings is a matter of urgency. “Living in dormitories is an absolute scandal in this day and age.”
However, he is worried by proposed cuts to public sector jobs. “If we have a community group home, with four people living in a normal domestic house, our staff will drop in or may sleep over to provide support,” he says.
“If a staff member retires or moves on, technically speaking we’re not allowed to replace them. We can’t close a house that four people live in; you can’t turn on and off people’s
lives like that. That’s where the moratorium or any future job cuts will hit us hard.”
Take the stigma out of mental illness
Taboos could be broken around issues such as depression – which leads to more deaths than road accidents
‘IF THERE WAS one key social justice issue you would pursue in government, what would it be?’’
This question, posed in the dying minutes of last week’s final leaders’ debate, forced the would-be taoisigh to pin their colours to the mast. All eyes were on Enda Kenny, king of the polls.
“I feel the priority should be the 300,000 people who suffer from mental illness,” said Kenny, “the 75,000 people who attempt self-harm and those who have the tragedy of suicide visit their families.”
So, with Kenny and likely kingmaker Gilmore promising support, what are those at the coalface of mental health in Ireland actually asking for?
For Kevin Smyth, chief executive of Aware, it’s a public health campaign to tackle the stigma of depression.
“I sit in awe of what the Road Safety Authority has done to bring down road deaths,” says Smyth. “I’d love to see that kind of thinking going into tackling depression.”
Smyth believes a communications campaign, using TV, billboards and programmes for schools, is needed. Some 400,000 people suffer from depression. “We want to see that number coming down and more people looking for help,” he said.
Citing World Health Organisation figures that put depression as the number two cause of the loss of healthy living for people between 15 and 44, rising to the number two cause for everybody by 2020, Smyth says it makes sense to “keep people out of hospitals, away from medications and using talk therapy instead”.
“I think if the government tries to deal with the stigma, there are actually enough of us out there providing voluntary services. We want more people coming to us for assistance.”
Padraig Allen, who was diagnosed with bi-polar disorder in 1968 and is an Aware volunteer, agrees. “The politicians can’t offer money, because they haven’t got it, but they can help deal with the awful problem of stigma,” he says.
“They need to come on board with moral and cultural support by going on local radio or the national broadcasters and expressing the view that depression and other mental health issues are an illness like any other,” says Allen, himself a former committee clerk at Leinster House.
Tony Bates, chief executive of youth mental health charity Headstrong, worked in the public health system for 27 years. He saw that adults “being admitted again and again”, had one thing in common: “their difficulties emerged in adolescence”.
“Eighty per cent of what becomes a mental health disorder in adult life emerges by the age of 20,” he says. Yet this is where the services are weakest. While there are some great agencies around the county, they are “isolated and fragmented”. He’s asking for more co-ordination, so that “who to go to is very clear to young people and the stigma of accessing that help is removed”.
The message to government from Headstrong’s Youth Advisory Panel, a group of young people who shape its programmes, is clear: “Talk to young people. Don’t tell us what you think we need. Ask us.”
Panel member Eoin Plunceid (24), from Mount Merrion in Dublin, says mental health care needs to start in schools. “Teachers need to have some sort of basic training and awareness around young people’s mental health.”
Darren Scully (18), of Ballymun, agrees. He says often teachers want to help, but don’t know how. They both feel that existing curriculum time dedicated to CSP and SPHE needs to have a greater emphasis on mental health.
For Ruth Baker (19), from Tralee, Co Kerry, community programmes such as Headstrong’s Jigsaw can help to tackle taboos: “It’s an Irish thing. You’re supposed to get on with your life, suck it up and deal with it . . . we need to put mental health out there in the community so that it’s not taboo and people aren’t scared to ask for help.”
Pia O’Farrell (25), from Carrickmacross, Co Monaghan, wants emphasis on “education and prevention measures around youth mental health before the big problems arise”.
Scully agrees. “If they catch the earlier signs of self-harm and depression, if the support is there for young people experiencing stress, family problems, exam pressure or bullying, will the Government not save money in the long run?”
For Joan Freeman, founder and chief executive of Pieta House, a centre for the prevention of self-harm and suicide, funding from the new government is key.
“By this day next week, 10 people will have died by suicide and the following week, there will be another 10,” says Freeman. “There’s almost double the amount of people dying by suicide than in road accidents, yet the funding for road safety is €20 million and for suicide prevention, it’s just €5 million.
Freeman is calling for the new government to develop a national strategy: "with a national co-ordinated approach. I know we would see a huge reduction in suicide". – JOANNE HUNT
INTELLECTUAL DISABILITIES: PEOPLE POWER IS VITAL
For Andy Heffernan, chief executive of St John of God community services, a charity that works with people who have intellectual disabilities, the new Government should learn from the old one.
“A lot of good work has been completed by the previous Government, and that shouldn’t be set aside,” he says. Citing a HSE-led report completed last year which sets out a strategy for those with intellectual disability to live in a community setting, Heffernan says implementing its findings is a matter of urgency. “Living in dormitories is an absolute scandal in this day and age.”
However, he is worried by proposed cuts to public sector jobs. “If we have a community group home, with four people living in a normal domestic house, our staff will drop in or may sleep over to provide support,” he says.
"If a staff member retires or moves on, technically speaking we're not allowed to replace them. We can't close a house that four people live in; you can't turn on and off people's lives like that. That's where the moratorium or any future job cuts will hit us hard."
JOANNE HUNT
