Thousands of disabled people who use personal assistants (PAs) to enable them to live independently are anxious and fearful about their ability to remain independent during and after the coronavirus outbreak.
Health Service Executive information about how it plans to protect them is being disseminated inconsistently, say advocates, and clarity is lacking on whether PAs will be allowed accompany them to hospital if admitted, and on when personal protective equipment (PPE) will be distributed to them and their PAs.
PAs differ from carers in that their work is designed by the person with the disability around their basic and more complex needs – such as washing and feeding or assisting them with work or shopping.
Owen Collumb (48) has a spinal injury, following a motorcycle incident near his family home in Co Longford 27 years ago. He has 120 hours of PA time per week and lives in Dublin where he works as a facilities manager with Muscular Dystrophy Ireland.
His accident left him paralysed from his lower neck down and with weakened vocal chords and cough reflex, meaning, he says, he would “get very sick indeed” if he got Covid-19.
“I usually have six PAs over the week, coming in. I have changed that to cut down on the numbers. I can’t social distance from them at all, and my disability puts me in the high-risk category.
“Another issue is people would often come to work for me after working in a nursing home and maybe somewhere else as well. I’m doing my best to manage that and so I had one lady with me all last week and now this week my PA will stay for 10 days. It’s the only way I can minimise risk but stay living independently.
“But if the PA gets the virus that leaves me in a predicament, and they won’t come if I get ill.”
Full PPE
He has “worked out a plan” with his PAs that if he gets ill they will remain with him in full PPE until such time as “they have to ring an ambulance. But yes I am worried.”
He says some PAs “don’t want to work because they are worried about their families” and he has heard of cases where people have had to go into nursing home care as they cannot get a PA.
The HSE has issued a 22-page contingency plan for home carers and personal assistants "during mitigation phase" which is welcomed by groups including Independent Living Movement Ireland (ILMI) and the Disability Federation of Ireland (DFI).
It classifies people into four categories depending on their level of need and sets out what care should be put in place for each in five scenarios: normal service; reduced service; alternative care/support provision; the person is ill with a non-Covid 19 condition; and the person contracts Covid-19.
In cases where it is not possible to maintain the person in their home, it says: “Consider temporary move to vacancy in congregated setting.”
Alarm
This is something that James Cawley, policy officer with ILMI, says "cannot happen", adding it has caused alarm among the more than 2,500 people in receipt of PA hours.
"The main thing causing anxiety is a massive lack of consistency in the information for people with PAs, depending on where they live. The HSE is distributing the information but then how and what gets passed on is different if you're in Donegal or Cork or in between.
“People are worried about what kind of supports will be available to them if they have to go into hospital. Their PAs often act as their interpreters, are experts in how they eat, are lifted into bed.”
Both he and Dr Joanne McCarthy, director of policy with the DFI, describe a growing fear that PAs redeployed to nursing homes and other front-line health services will be lost to them for good amid post-crisis cuts.
Dr McCarthy added: “PAs need a fair allocation of PPE and training on how to use it. They may also need online training in working during these times. Wages are already low and extra demands on time should be met by extra resources to pay for overtime.”
Mr Collumb agrees the crisis has made people with disabilities feel “very vulnerable”.
“These issues put the focus back on your disability, which you try to get away from. Your disability is your main concern again when you’ve built an independent life. I’d like to say it doesn’t affect my mood, but it does.”
