My ‘choice’: 42 minutes help a day at home or 24 hours a day in residential care
‘The number 42 explains why disabled people are trapped in their homes’
I was writing an ad for a personal assistant last week. As I typed the words “personal assistant”, I found myself hitting the back space key. I typed “healthcare assistant” instead, then “carer”. I pressed delete again.
I still haven’t finished the ad. What term should I use?
If I’m talking to other disabled people, I use the term “PA” without thinking. Outside of that, I find myself searching for ¨the right term. Everyone is familiar with the term “carer”. The HSE describes a carer as someone who is providing an ongoing significant level of care to a person who is in need of care in the home due to illness or disability or frailty.
Illness. Disability. Frailty. I just need someone to help me with the day-to-day activities I can’t physically do myself.
Home help, home care and personal assistant services are the principal forms of personal support services available. Home help and home care are terms widely used and understood. They offer support to people who need assistance within the home. They are said to allow people to remain at home or to avoid long-term care – to continue to live independently. Living independently does not mean simply remaining at home or avoiding long-term care. Independent living can, however, be achieved through an effective personal assistance service.
So what exactly is personal assistance? According to the Independent Living Movement Ireland which is currently running a Personal Assistance Service Campaign, a personal assistance service is about providing disabled people with the necessary supports, both inside and outside of the home, to enable disabled people to live a life of choice, dignity and respect.
Choice. Both inside and outside the home. I go back to my ad and re-type “personal assistant required”.
Like many others, I am availing of a personal assistance service. I have a set number of hours and use these primarily for assistance at home. In 2017, 84 per cent of those in receipt of a personal assistance service received less than three hours a day – 44.41 per cent received an average of 42 minutes a day. The reality for many disabled people is that we are reliant on family to supplement our PA service. Sometimes I stop and think about where I would be without my family.
How would I use the 42 minutes a day?
Forty-two minutes would allow me to get out of bed and into my wheelchair. There might be time for a quick breakfast.
How would I get to work?
How would I lock the door of the house if I wanted to leave?
Forty-two minutes a day explains why young disabled people are living in nursing homes.
Forty-two minutes a day explains why disabled people are trapped in their homes.
Dressing and eating
In 2017, 42 per cent of people were in receipt of between one and five hours a week. That’s exactly 42 minutes a day. This is unlikely to facilitate more than basic care like dressing and eating. Disability is a 24-hour affair. Assistance is not just required for an hour in the morning and evening. There are 1,440 minutes in my day, during which I require assistance; to get dressed, to get to work, to prepare food, to take my medication, to open doors, to take off my shoes, to pour a glass of water, to turn on my computer at work, to do the grocery shopping, to do my physiotherapy, to turn off the light, to have a shower, to plug in the laptop to allow me to write this article. To get bed when I finish writing this article.
In 2017, 63 per cent of the disability services budget was spent on residential services while just 5 per cent was spent on personal assistance. This has to change. This will not enable disabled people to access education or employment or to live meaningful lives.
My first experience of having a PA was in college. This enabled me to live away from home, to study, to socialise and to gain valuable work experience, all of which showed me that disability wouldn’t stop me from working and from living a meaningful life. When I moved home after graduating, I quickly realised the PA service available at home was different. The hours were limited. Mornings only at first.
I have had wonderful PAs since I moved home, for these allocated hours. For all the other minutes and hours, I’ve had my family.
My mother, who moved with me to a hotel in Dublin while I sat the FE1 exams and drove 150 miles to Galway every Tuesday so I could do my masters.
My father, who collects me from work.
My parents, who sleep with their phones beside them and answer my calls if I need something during the night.
My sisters, who come home at weekends and make trips away possible.
My best friend, who will collect me any time of the day or night if I need a lift.
My colleagues, who turn on my computer every morning, take off my scarf and fill up my water bottle. (And not forgetting my assistance dog Gina, who opens the door to my office every morning).
For many disabled people, the “choice” has come down to 42 minutes a day at home or 24 hours a day in residential care. Many others, like me, rely on family to fill the gaps. I feel very lucky mostly. Other times, I feel guilty – 32-year-olds aren’t supposed to be this dependent on their parents and sisters and friends. Parents are entitled to live independent lives too. It’s daunting to think about what would happen without the level of informal support I have.
Then I think about the PAs I have. They know me. They help me to be independent. PAs allow us to reduce some of our dependence on family and others. Residential services are the single most significant element of cost, accounting for almost two thirds of the total disability services budget. This needs to change. Minutes are not enough. Give people more hours. To access education and employment.
To access day-to-day services like public transport. Budget 2019 has announced an additional €150 million for disability services. Let’s hope that there is a real investment in personal assistance.
This is the true path to independent living.
Platform Series: Aisling Glynn
1) Weren’t they good to give you a job
2) 847 in Dublin, zero in west Clare
3) It’s impossible to forget
4) I’m disabled . . . by society
5) Wheelchair versus plane
6) The number 42
7) What makes us disabled
8) Life’s challenges
9) I don’t think I’d get up in the morning