Damning report finds 1,300 under 65s living 'wasted lives' in nursing homes

Many younger people were placed in nursing homes following ill health or an accident, such as brain injury.

More than 1,300 people under the age of 65 are living “wasted lives” in nursing homes that are inappropriate for their needs, a damning new report by Ombudsman Peter Tyndall has found.

In "Wasted Lives: Time for a better future for younger people in nursing homes’, to be published on Wednesday, Mr Tyndall says “systemic issues” and a “fractured funding model” have left hundreds of people confined to the homes, often against their wishes.

On foot of several complaints, the Ombudsman launched an investigation into the issue. He spoke to 28 younger people from 36 years of age upwards, living in nursing homes, who told him the challenges they faced in accessing supports which would otherwise have enabled them to live at home or independently.

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,” Mr Tyndall said.

He found:

• There is no system to record the number of people affected and how they are affected; 
• Many residents when admitted, believed their stay was temporary;
• Some younger people with disabilities said they did not give informed consent about being placed in homes on a long-term basis; 
• The availability of primary care services for younger people in nursing homes is patchy or non-existent and many activities are not suitable for them.

Many were placed in nursing homes following ill health or an accident, such as brain injury. 

One man, Alex (39), said that when he came into the home, he did not think it would be for life and if he had thought it was he would have driven his chair off a bridge. He was not happy to have been living in a nursing home for five years and felt he was just “vegetating”.

Existence is 'jail-like'

Another 50-year-old man, Thomas, who has a brain injury, said his existence is “jail-like”. He goes to bed during the day because there is nothing to do in the dementia unit for older people where he is living.

Mr Tyndall called on the Government to finally progress commitments to end the practice of placing younger people with a disability in nursing homes.

The HSE told him 1,320 people under 65 were living in the homes under the Nursing Home Support Scheme.

Mr Tyndall said the figures do not reflect the “full picture” and called on the HSE to carry out a national survey within the next 12 months to identify all individuals in these circumstances.

The inappropriate placements represent a “form of institutional care” and the lack of a specific policy and strategy to address the issue is “not acceptable”, Mr Tyndall said.

He said services and supports need to move away from a “medical model” of disability to a social model and “person-centred approach” in keeping with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

The Ombudsman urged the Department of Health and the HSE to address gaps in State supports that would enable younger people with a disability to live independently and called for the publication of an overarching policy framework by the end of 2021.

The small number of younger people who are living independently in their own homes with support from the HSE show it is possible to live a full and happy life but that many were not offered this option, he said.

Home support scheme

A statutory home support scheme will be needed to fulfil a programme for Government commitment to end the inappropriate placements, Mr Tyndall added.

He also called for a dedicated budget in each HSE community service area to improve the quality of life of those affected and to enable them to move to more appropriate living arrangements if they wished.

The HSE should set a target to reduce the number of young people in nursing homes and report progress on an annual basis, he added.

In a statement issued this morning, the HSE said it is "fully committed to the UN Convention on the Rights of People with a Disability and the implementation of Sláintecare which is ultimately about delivering the right care in the right place at the right time."

The HSE said 20% of the under 65s in nursing homes are aged under 50 and "many of these people are satisfied with this arrangement and for many, this may be the appropriate setting based on their clinical and support need."

"For some people, and based on assessed need, nursing home interventions are appropriate and where the required clinical supports are available and best met. However, the HSE agrees that this must be the subject of a care and case management approach that facilitates structured reviews and where the will and preference of the individual is of paramount importance.

"It is important to note that an individual’s clinical and support requirements, rather than their age, is the major determining factor for placement in a nursing home," the HSE said, adding that work is ongoing to address the nursing home care of people under 65 who wish to live elsewhere.