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Opinion: Disabled people in Ireland need the right to personal assistance

Assistance is often the difference between existing and living for many of us, writes James Cawley.

James Cawley Disability advocate

I AM ONE of thousands of disabled people who live independently in Ireland thanks to what is known as the personal assistance services. 

These services mean different things for different people, varying from help with everyday tasks to personal care. For many with physical disabilities, it means employing a personal assistant who can help us to live as independently as possible. 

Independent living is about having the freedom to make the same choices as everyone else in housing, transportation, education and employment.

Independent living is about choosing which aspects of social, economic and political life you want to participate in. It’s about having control over your life, having a family, getting a job, participating socially and realising your goals and dreams.

It is about equality, and fairness and choice, not dependence or charity. For many disabled people, independent living can best be achieved through the employment of personal assistants to provide support where needed. 

In March last year, Ireland formally brought in the United Nation Convention on the Rights of People with Disabilities which states that disabled people have the right to live in the community and access a range of support, including personal assistance.

And yet, not every disabled person is able to achieve this fundamental right due to a lack of personal assistant hours. 

In 2017, 1.51 million service hours were delivered to 2,470 people. Shockingly, nearly 85% of people with personal assistance received fewer than three hours per day on average. Less than half of them had an average of just 42 minutes each day.

Anyone who receives 42 minutes per day of assistance is not going to be able to live independently, access education or employment, or become involved in meaningful social engagement.

I’m a policy officer with the Independent Living Movement Ireland (ILMI) which is a disabled person’s organisation led by disabled people from across the country. We want to ensure every disabled person has the right to a personal assistance service in some form or another. 

I receive 48 hours of personal assistance across the week, travelling from Longford to Dublin on the train to work.

This allows me to live independently and with ease. A personal assistant allows disabled people to do all the tasks that we cannot do for ourselves. Simply, it provides us with the freedom and flexibility we need to live our lives as we choose.

A personal assistant is hired to help us with a range of day-to-day tasks we cannot physically do ourselves. With an assistant, we’re in control and can get help with tasks in our lives. 

This includes everything from personal care to domestic chores and assisting in day-to-day activities such as shopping, support in the workplace or socialising. Another distinct benefit is that it reduces our dependence on family and friends. which can often be high. 

Personal assistance is often the difference between existing and living for many of us.

Necessary service

For me I’m a son, brother, uncle, friend, fiancé, co-worker – but I couldn’t take on these roles if I didn’t have a PA.

In Ireland, we need the personal assistance service to be enshrined into legislation to ensure I can continue to be all of these things. Disabled people don’t need a hand out – but we do need a hand up sometimes.

Disabled people with a lack of help from personal assistants could become trapped in their own homes without the chance to interact, and could be prone to isolation or depression. They are effectively institutionalised in their own homes.

When services like personal assistants are absent from my life, only then do I realise I’m disabled. A personal assistant is an extension of my limbs, really. 

We have a right to live our lives with choice, dignity and respect. Disability does not discriminate, it’s me today but it could be you tomorrow. Over 13% of the Irish population has a disability.

Personal assistance allows disabled people to have their needs supported in the community in a dignified way.

A fundamental access to personal assistance services needs to be included in legislation as a basic human right. A motion is being put forward in the Dáil this Tuesday by Independent and Independents 4 Change TDs about the right to personal assistance for disabled people in Ireland. 

The motion will request approval from the Dáil to bring in a commissioner for independent living for disabled people in Ireland.  

The right to a personal assistance service for disabled people is of the utmost importance, and I truly hope this motion receives support from politicians. 

This is the first step in a long road to securing our right to access the personal assistance services. We need to live as equal citizens in our communities and to ensure real independent living becomes a reality in this country. 

James Cawley is a policy officer with the Independent Living Movement Ireland (ILMI) who is part of a national campaign to promote the right to personal assistance for disabled people in Ireland. 

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About the author:

James Cawley  / Disability advocate

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