Ireland’s recent ratification of the United Nations Convention on the Rights of People with Disabilities (UNCRPD) is “ironic” given the ongoing lack of supports for people to live independently, a leading disability rights organisation has said.
The Centre for Independent Living (CIL) is calling for a “drastic increase” in funding for personal assistants (PA) – employed to assist people with disabilities – saying the vast majority (84 per cent) of people who have a PA service get less than three hours a day. Almost half get just 42 minutes a day.
PA hours are funded by the HSE but the disabled person directs the PA on how to assist them with, for example, getting up in the morning, cooking, going to work or school, socialising or shopping.
Article 19 of the UNCRPD recognises “the equal right of all persons with disabilities to live in the community, with choices equal to others”. Signatory countries will ensure: “Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance, necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”.
More than 2,300 disabled adults, however, remain in residential care homes, while hundreds are thought be “trapped” in nursing homes due to lack of PA hours.
All of these people would benefit from a PA, says Damien Walsh, chief executive of the CIL.
“A PA is totally different from a carer or a home-help. A PA empowers and enables people to make their own choices and live their own lives. It is ridiculous that we have signed the UNCRPD and the vast majority of the HSE’s disability budget is still going in to residential services.”
This week, the CIL will publish a video a day, documenting people’s experiences with PAs.
“We want to raise awareness about the benefits of having a PA, and increase pressure on the HSE about how it allocates its disability budget,” says Mr Walsh.
Shelly Gaynor (38) from Portmarnock in Dublin has cerebral palsy and has had a PA since she was 18.
In her film she tells how she moved out of her parents' home nine years ago and began to "truly live independently". She has an apartment and works as a consultant to Enable Ireland.
She gives talks on her life and how her home has been adapted to maximise her independence. “I have motors on the doors and I have environment control.”
Asked about the necessity of PAs to disabled people she says: “We’re not looking for anything special. We’re looking for equal rights that everyone else has.”
In a statement, the HSE said it had “consistently year-on-year increased the number of PA hours”, from 1.29 million hours to 2,057 people in 2013, to 1.5 million hours to 2,470 people in 2017.
This equates to an average of 607 hours annually per person accessing, or 11 hours a week.
The videos can be viewed at dublincil.org