Cerebral Palsy sufferer campaigns for right to PA

A young Cavan man living with Cerebral Palsy is calling on the next government to better help people with disabilities live independently by funding a Personal Assistant Service (PAS).
Disability activist Damien O’Reilly from Crosserlough has represented the Disability Federation of Ireland on the HSE coordinating committee for over five years.
After six years of negotiation, he secured a budget to attain a PAS from the HSE. However, as there is no service provider in the North-East region at present, he was forced to set up his own company to administer his direct payment to employ a personal assistant (PA).
Damien has impaired speech, but his PA assists in interpreting and translating his speech. He spoke to The Anglo-Celt via email, in which he also welcomed the decision by local councillors in Cavan to support his campaign.
At the recent monthly meeting of elected members, Fianna Fáil’s Craig Lovett and Fine Gael’s TP Smith tabled a joint motion asking that the local authority support the right to PAS for disabled people so that they may have the ‘freedom, choice and control over all aspects of their lives to enable them to fully participate in an inclusive society as equals’.
“From the age of four, I think I was a disability activist. Even though I had a physical disability, I wanted to be able to attend the local primary school (Crosserlough NS) where my brother and sister were also enrolled. I know it sounds strange, but I honestly didn’t see myself as being different to other kids,” Damien told the Celt.
Of course, he accepts that this didn’t happen without its “many challenges”.
“One thing I often think of is, throughout my time in primary and secondary school, I actually never experienced any form of bullying, which looking back now seems incredible. After completing primary and secondary school, I was accepted into DCU to do a degree in Communications but the lack of a Personal Assistant Service (PAS) meant I couldn’t take up my place. This has had a huge impact on my life.”
Damien was one of the first in the country to follow a path to set up his own company to employ a PA. Even though it entails a “lot of work and responsibility”, it still gives him “more choice and freedom”.
He says PAS is a “tool” that allows him to live independently, that enables him and others to do all the tasks they otherwise cannot do for themselves.
“I have complete control over my daily service. My PA assists me in all aspects of my daily life and works under my direction, whether this be going shopping, to meetings or socialising. They also act as interpreter. My PA does not ‘look after’ or ‘care for’ me.”
A distinct benefit of PAS, Damien feels, is that it reduces his dependence on family and friends for assistance.
In 2018 alone, 1.63 million hours of personal assistance were provided to more than 2,500 people with a disability, which is more than 122,000 additional hours and 65 more individuals serviced than in 2017, a fifth consecutive annual increase.
At the end of the first half of 2019, 824,467 personal assistance hours were delivered to 2,550 people with disabilities.
A PAS, Damien points out, is completely different from a Home Help/Home Care situation, where the carer is employed by an agency and operates from a documented care plan.
Damien is also an active member of Independent Living Movement Ireland (ILMI). It is spearheading the campaign for the ‘Right to a Personal Assistant Service’ and members most recently had their plight raised in the Dáil by Donegal ‘Independents For Change’ TD, Thomas Pringle.
This, Damien states, was the “first step” in recognising that the support needs to be legislated for as a basic human right in line with the United Nations Convention on the Rights of People with Disabilities (UNCRPD), which Ireland signed up to in March 2018. Article 19 states that disabled people have the right to live in the community and have access to a range of in-home and other supports, including personal assistance.
Since the issue was raised in the Dáil last November, Damien and other campaigners have switched their focus to getting individual motions passed at local authority level across the country. In Cavan, the motion tabled was unanimously passed.
“Having the motion receive cross party support on a right to personal assistance is encouraging, but what we need to see next is action and legislation brought in to make this a reality,” said Damien.

For more information on the ILMI #PASNOW Campaign visit www.ilmi.ie or follow us on Facebook https://www.facebook.com/ILMIreland/ or Twitter @ILMIreland