IF YOU’RE PROVIDED with what you need in life you’ll grow and prosper. But without it you get stuck.
I became a member of the brain injury community in 2019. Prior to my accident, I knew nothing about brain injury.
It’s more common than I had expected: approximately 19,000 people in Ireland sustain an acquired brain injury annually and a further 120,000 people are estimated to be living with disability caused by brain injuries. It’s likely almost everyone knows a brain injury survivor.
On my journey, I’ve met many brain injury survivors and I can wholeheartedly say, they’re among the most resilient, determined and persistent people I know. Brain injury recovery demands it!
Lack of resources
I’ve spent two years reaching out to the brain injury community and I’ve learned about the abysmal lack of community neuro-rehabilitation services across Ireland. They’re the services – like physiotherapy, occupational therapy, psychology support, speech and language therapy, or help to return to work or education – that are crucial for brain injury survivors when we’re discharged from acute hospital care.
Having access to neuro-rehabilitation close to home, or not, can really make or break a survivor’s future. It empowers our ability to live life to its full potential. Without rehab, we’d never even know what’s possible for us.
This insufficiency is so harmful to brain injury survivors and their families across the country, so I wanted to give a voice to the Irish brain injury community. I’ve been working with Acquired Brain Injury Ireland (ABII) on its ‘Right to Rehab’ campaign, which was funded by the Irish Human Rights and Equality Commission.
It sees brain injury survivors raising awareness that rehabilitation is a human right. The campaign also demands equal access to essential rehabilitation services and increased state provision to make the ‘right to rehab’ a reality.
I have the Right to Rehabilitation from Acquired Brain Injury Ireland on Vimeo.
As part of the campaign, we wanted to learn more about the barriers that brain injury survivors face when it comes to accessing timely neuro-rehabilitation, and what they’d like to see a change in terms of rehabilitation services in Ireland.
Rehab – a human right
We posed a question to brain injury survivors: Are you aware that rehabilitation is a human right, enshrined in Article 26 of the UN Convention on the Rights of Persons with Disabilities, which was ratified in Ireland in 2018? 60% of people answered No. In 2020, the Neurological Alliance of Ireland (NAI) published a report highlighting limited access to neuro-rehabilitation services in the community.
These findings were echoed throughout Ireland when we asked brain injury survivors how satisfied they were with the services they receive or those they need. For example, almost 80% of those who responded to our question told us that psychological supports are necessary for their recovery, but only 28% said they’re getting the service they need. 70% told us they need Case Management supports – a single point of contact to help them navigate their rehabilitation pathway – but only 21% said they have the access they need.
Overall, the information gathered as part of the Right to Rehab campaign shows that while most brain injury survivors cite the range of rehabilitation services as important for their recovery, on average in almost one in two cases their access to those services is unsatisfactory, or simply unavailable.
Perhaps the most tragic impact of the severe lack of statutory investment in rehabilitation is that it forces the inappropriate placement of young brain injury survivors in nursing homes.
When I suffered the brain injury as a result of a road traffic accident in 2019, there was a suggestion that I, like so many other brain injury survivors before me, would be sent to a nursing home. I was only 35, an inappropriate placement for a young woman.
Last year, the Ombudsman’s Office published the ‘Wasted Lives’ report, highlighting the extent and profoundly damaging impacts of this systemic practice. The report showed that of the 1,300 individuals under 65 living in nursing homes in Ireland, the majority are survivors of brain injury, including stroke.
They are being denied their human right to rehabilitation and the opportunity to rebuild the life they fought for. The Irish Government needs to act now, to implement the Ombudsman’s recommendations, allocate budgets to reduce the number of young people in nursing homes, and prevent more admissions in the future.
Brain injury survivors can continue to make progress on their recovery journey throughout life, but the first three years are critically important for functional neuroplasticity (as the brain learns to move functions from a damaged area to an undamaged area).
This is why it’s so important that they have access to the right support and services at the right time. For every brain injury survivor, one more day left stuck in a nursing home, waiting for rehabilitation, is another day wasted.
Dr Rosie Mangan is a Postdoctoral Researcher in Environmental Sciences at the University of Stirling in Scotland. She sustained a brain haemorrhage in a car crash while on a field trip abroad in Brazil in 2019. She underwent extensive rehabilitation and has become a committed advocate for access to neurorehabilitation services. Visit www.abiireland.ie/right-to-rehab for more information on the Right to Rehabilitation campaign, and use the hashtags #RightToRehab and #UNCRPD on social media.
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