The Time is Now #PASNow

Ah, haven’t you all missed me blogging about the same thing over and over again? Once again, I’m writing about an issue close to my heart: the need for Personal Assistance to be recognised as a legal right in Ireland.

Independent Living Movement Ireland (ILMI) have relaunched their #PASNow or #PersonalAssistanceServiceNow campaign. The aim of this campaign is to raise awareness of the important role the Personal Assistance Service (PAS) plays in the lives of disabled people across the country.

So what’s the story behind this campaign?

In 2018, Ireland became the last European country to ratify the United Nations Convention on the Rights of People With Disabilities (UNCPRD). According to Article 19 of the UNCRPD, disabled people should have access to a range of services to enable them to live independently, including home help and Personal Assistance.

Currently, even with the ratification of the UNCPRD, Personal Assistance is not recognised as a right in Ireland. In fact, the Personal Assistance Service was launched by the Center for Independent Living in 1992 as a pilot scheme, and it remains a pilot scheme to this day. This means that funding for this scheme could be relinquished at any time, leaving thousands of disabled people across the country without a service that makes a meaningful difference in their lives.

Surely that couldn’t happen? Don’t be so sure. In 2012, a group of disabled people were forced to take action when Health Minister James Reilly announced sweeping cutbacks of €12million which would have eradicated the Personal Assistant Service. Although these cuts were reversed, the reality is that 44% of Leaders (PAS users) only receive services for the equivalent of 45 minutes a day (Source: Pauline Conroy, Disability in Ireland, 2018). Could you squeeze your life into less than five hours a week? Furthermore, there are no guarantees that following the financial devastation that COVID-19 has caused, that funding for the PAS is safe into the future.

Without the right to a PAS, many disabled people are living mediocre lives, not reaching their true potential. Many young people across the country are dependent on aging parents to cater for their personal care needs. Others (it is estimated to be 1,300 people at least) are living in unsuitable nursing or residential homes, with little control over what time they get up, when and how they are showered and dressed, or who carries out these tasks for them (as highlighted in a HSE report entitled Wasted Lives: Time for a better future for younger people in Nursing Homes). Julia Thurmann was one such lady who was trapped in a nursing home for over ten years, when all she needed to live independently was accessible housing and personal assistance. Her story is not an isolated one. This is not acceptable in twenty-first century Ireland.

So what exactly are disabled people looking for?

Independent Living Movement Ireland has divided what disabled people are looking for into five headings:

  1. Define: The PAS needs to be defined as a service that offers choice, dignity and respect. In order to do this, funding for this service needs to be ring-fenced and separated from home help services.
  2. Legislate: Make PAS a legal right in Ireland so that those who are wrongfully denied this service have recourse. That way, Ireland will be compliant with Article 19 of the UNCRPD.
  3. Invest: There has been no substantial investment into the PAS since 2008, despite a growing demand for the service. ILMI has asked for the PAS budget to be increased by €12.5m annually. Woah, that’s a lot, you say. Well yes, but it’s just as costly, if not more so, to have disabled people living in unsuitable residential accommodation. Or to have a family member denied the chance of pursuing a career because they have assumed the role of unpaid carer. This creates long term dependence on the State and puts pressure on the HSE over something that is not a healthcare issue but rather a human rights one.
  4. Standardise: Anecdotally, disabled people know that it can be more difficult to access PAS in some areas than in others. Introducing a single standard assessment of need across all HSE CHOs (Community Health Organisations) would make the process fairer with the removal of unnecessary bureaucratic barriers.
  5. Promote: A PA is not a carer, nor does he/she know what is best for the leader. The Leader should have full control over the service. This message must be strong in order to shatter the assumption that disabled people are incapable of knowing what’s best for them. Regardless of one’s impairment, living independently is a basic human right.

Disabled people should not be reduced to downplaying their abilities in order to access services. They are not objects of care but equal citizens who, with the right supports in place, have so much to contribute to our communities and the economy.

So, how can I help?

There are so many ways to get involved in the #PASNow Campaign. For further details, please email info@ilmi.ie. Showing solidarity sends a powerful message that every single one of us deserves to have choice and control over our own lives.

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