Woes and Wheelchairs: A Personal Assistant’s account

In #rabble5, Print Edition by Hugo Bass2 Comments

Illustration Paddy Lynch

Illustration Paddy Lynch

Living with a disability can be a challenging and often isolating existence. Having worked as a Personal Assistant to people with disabilities for over 6 years, Hugo Bass calls the callousness of recent proposed cuts “A damning indictment of state detachment, administrative sloth and the voicelessness of the vulnerable.”

You’ll need to have been living under a stone not to know that there have been massive reductions in funding for disability advocacy and support organisations. Public outcry against further proposed cuts by James ‘Bottler’ Reilly caused an embarrassing u-turn by the FG/Lab coalition earlier this year. Perhaps one of the most damaging aspects of the Government’s current policy has been the erosion of personal assistance entitlements – the provision of help to another person with the activities of daily life. I’ve witnessed first hand the resultant trauma and general malaise suffered by both service users and personal assistants (PAs). It’s shocking that a service so vital to the lives of so many people could be attacked with such vigour.

Expecting people to wait several hours before being able to use the toilet is a cruel and unusual punishment

When it comes to disability, society itself is often the main disabling factor. A person with a disability often depends heavily upon their PA’s support to maintain a decent standard of living, maintain an active role in the community and retain their human dignity. Naturally close bonds develop between PA and the person they assist, particularly when the level and duration of assistance is high. The mood of either individual can greatly affect both. One former long term PA said “the job has great humanity, but it’s a ridiculously tiring role emotionally, you can’t just walk off the jobs. It’s not exactly the sort of place you can ring in sick. It feels like you are covering cracks due to a lack of funding. Sometimes there’s an overwhelming sense of being trapped, with no real supports coming from the agencies involved.”

The harsh realities being endured by PAs and service users has seen unbearable stresses placed upon each. For some, wages have fallen by €7 per hour in the past three years and weekly hours by up to fifteen. It’s become a really tough battle to make being a PA pay. Many others have been forced to take on second, or third, part-time jobs to get by. This has had a direct impact on the quality of service they can provide, their hectic schedules leave them burnt out.

These reductions in PA funding have been stealthy and incremental. When coupled with other cuts such as the reducing the winter fuel allowance by 6 weeks, you’re looking at a grim reality. Stripping a high dependency individual of almost 20% of this allowance during the coldest period of the year is nothing short of barbaric, leaving them (and indeed their PA) cold, miserable and vulnerable. Those with mobility limitations often have difficulty maintaining healthy body temperature and have limited heating choices as they try to supplement the reduced allowance from a weekly €188 disability benefit. The shafting of people with disabilities by the State is relentless and unmerciful.

The cuts have placed a heavy emotional burden on PAs. Sinead O’Donnell, a PhD student and member of the NUIG Centre for Disability Law and Policy Reform notes how “the wrong people feel responsible for the cutbacks. Those on the ground feel as if they are implementing them, whereas the reality is that it is the bureaucrats and pen pushers who are culpable, but who never have to witness first hand their intolerable ramifications”

In countries like Sweden, Finland, Britain, Belgium and Germany people with disabilities have, with social policy and legislative support, chosen to self-direct their personal assistance, controlling the recruitment, management, payment and training of their PAs. Just a handful of individuals in Ireland have had the opportunity to take this route, through a pilot scheme administered by the group Aiseanna Tacaiochta. For the most part, intermediary organisations such as the Irish Wheelchair Association and the various Centres for Independent Living direct the provision and management of a person with disabilities PA services. As Declan O’Keefe, one of the founding members of The Centre for Independent Living put it: “From the beginning, we were aware of the importance of personal assistance and of the vital role of PAs in enabling those of us with disabilities to take control of our lives. Indeed, it was CIL’s pilot programme which empowered me to live an independent life.”

These groups have been hit hard by the cuts, but the unfortunate reality for both the PAs and service users in Ireland is that these cutbacks are not borne by these intermediate organisations but passed down the line. As demonstrated time and time again in Ireland these middlemen are the administrative fat that soaks up available resources. The pass-the-buck culture in these organisations is endemic. A 2010 UK study entitled “What is ‘More Integration’ between Health and Social Care?” found that these intermediaries promote inefficiencies and higher costs. Their slice of the pie far outweighs their contribution to the lives of the service user. The agencies regularly take half the hourly rate paid for assistance leaving the PAs to work for near minimum wage.

What utter bullshit!

Given the cutbacks, something’s got to be done about this belching, bloated bureaucracy.

According to Martin Neachtain of Aiseanna Tacaiochta those service users who have adopted the self-directed model have been “able to manage the cuts better than others, without losing any element of service”. Research by the Northern Ireland Department of Health has shown that where the service recipient made the change to a self-directed model, there was greater control, autonomy, privacy, value for money and flexibility for all concerned. Surely one of the most effective ways of combating the cutbacks alongside steadfast resistance would be a switch, where possible, to this method.

Those reductions that have been assimilated at intermediary level have undoubtedly led to a decreased quality of service. From a PA’s perspective, we’ve seen delays in wage payments and annual/sick leave requests. Weak administrative processing makes our working lives tougher. It significantly reduces job satisfaction and reduces the user service.

These pen pushers should spend a day in the shoes of someone dependent on the services they are dismantling. As disability rights activist and playwright Rosaleen McDonagh put it recently “not only is the service seen as ‘low fruit’ but also it’s seen as a luxury, not a necessity. At a guesstimation, including all the variables regarding individual Disabled people’s type of impairment and the support they need, it’s suggested that the PA service saves the government €1,500 a day per person due to the fact that we’re living in our own homes and not in an institution. If this is not value for money, what is?”

Expecting a quadriplegic person to spend several hours alone and functionally isolated between PA shifts is inhumane. Expecting people to wait several hours before being able to use the toilet is a cruel and unusual punishment and can lead to situations of extreme trauma, loss of dignity and personal embarrassment. Incidents such as these are becoming all too commonplace.

Given the ominous outlook created by the cuts, the workplace environment has adopted a gloomy character with both parties fearing for their futures. As Mary Collins, a protester involved in the recent triumphant action against further PA cutbacks told Trade Union TV outside the Dail: “Why don’t they let us live in our homes, fulfill our dreams and be productive members of society instead of placing the fear of God into us with every announcement?”

Still Minister Reilly and his gang implement their cutbacks regardless of cruelty, injustice and barbarity. But the fight goes on, undoubtedly buoyed by the recent government u-turn on the proposed reduction to PA hours. Because as Rosaleen McDonagh rightly pointed out during those Dáil protests, “we are not asking for anything unreasonable. But the way these things are being dealt with, it’s as if we are an easy touch. We are not”.

Illustration by Paddy Lynch

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