Published on 5 May 2021
Following his investigation into the placement of people under 65 in nursing homes, Ombudsman Peter Tyndall said that those he spoke with told him they had no option but to live in nursing homes due to a lack of support from the State.
His report, ‘Wasted Lives: Time for a better future for younger people in nursing homes’, is published today, 5 May, which is also designated ‘European Independent Living Day’. According to the HSE there are over 1,300 people under 65 in nursing homes.
The Ombudsman said that his report was not a criticism of nursing homes, but was about the inappropriateness of them as accommodation for younger people with a disability. He said that most of the people he spoke with during the investigation wanted to live at home but their wishes were not being granted.
Following complaints to his Office, the Ombudsman carried out 28 visits with people directly affected and spoke with representative groups.
The Ombudsman said:
“One of the people we met during the investigation said that he had wasted the best years of his life in an institution. Another, who had suffered his injuries in an assault, said the person convicted would one day leave prison - he had no prospect of leaving the nursing home.”
The Ombudsman also said:
there is no system to record the number of people affected and how they are affected
many residents told him that, at the time of their admission, they believed their stay in a nursing home was temporary
the health system and the way care is funded is biased in favour of institutional settings
some younger people with disabilities said they did not give informed consent about being placed in nursing homes on a long-term basis
the availability of primary care services for younger people in nursing homes is patchy or non-existent.
many activities in nursing homes were not suitable for younger people.
The Ombudsman said the small number of younger people who are living independently in their own homes with support from the HSE showed it was possible to live a full and happy life. Unfortunately, most of those that the Ombudsman met with were not offered this option.
The Ombudsman’s report notes that four of the people he spoke with during his investigation died during the pandemic and the report is dedicated to their memory.
The report contains a number of recommendations to the HSE and the Department of Health including:
Work on a national survey should be used to identify other individuals in similar circumstances and follow-up up actions should be implemented as a matter of urgency.
The establishment of a budget dedicated to each HSE area to improve the quality of life of the individuals affected
That the HSE and Department of Health draw up strict guidelines for staff involved in processing applications for the Nursing Home Support Scheme to ensure there is fully informed consent
The Department of Health to review the statutory provision governing HIQA registration of health service providers to support a move towards a service model of registration, as recommended by HIQA.
The development by the HSE of a comprehensive information package for younger people affected.
The report of the Ombudsman’s investigation: ‘Wasted Lives: Time for a better future for younger people in nursing homes’, describes the cases of over 20 younger people in nursing homes, including:
Mark who was 48 when he suffered a stroke. He has been in a nursing home for nine years. He wants to leave as he is not happy there. Mark is a musician and, prior to his stroke, toured the world with international acts. He says he does not recall filling in the form for the Nursing Home Support Scheme and says he was not given any option other than a nursing home. Mark says there are no activities for younger people in the nursing home, and he has no choice as to when he eats, what time he gets up, or what time he goes to bed. A local charity found him a home but his support package from the HSE is insufficient, so he can only stay there for one day a week.
Francis was 52 when he suffered a brain injury after he fell from a ladder when building his own house. He has been in a nursing home for eight years. His house is now wheelchair accessible. He is very unhappy in the nursing home but cannot get a care package to enable him to live in his own home.
Liam is 52 and in a nursing home. One of the few activities he enjoyed was a visit to a swimming pool. However, he had to pay to attend the pool, and the cost of transport to it. He can no longer afford it and his activities are now very limited.
Rose was in her late 40s when she suffered a brain injury. She is now in a nursing home. When the Ombudsman’s investigation team visited her she was in pain and her advocate advised her to visit a local hospital. She said she could not afford to, as she was required to be accompanied by an escort, which cost €23 per hour, and she would also have to pay the cost of transport to and from the hospital.
Adam was 45 when he fell and suffered a brain injury. He was admitted to a nursing home from hospital. He thought it would be only for a few weeks as respite, but spent five years there. (He is now living independently at home with two hours support per day, six days a week.) He had signed an application form for the Nursing Home Support Scheme but says he did not realise what he was signing. He told the HSE he never signed for a permanent stay in the nursing home. The HSE said he would not have been in a position to remember due to his condition at the time. He wonders why he was asked to sign the form if the HSE felt he did not have the capacity to do so at the time.
The Ombudsman’s report and an Executive Summary are available at: www.ombudsman.ie
Note to media:
A one-minute MP3 sound clip of comments for young people in nursing homes is available to download at: