World Autism Day: My brother and thousands others are suffering as disability day centres have still not returned to full service

In a very 2020 setting in early summer I sat in my childhood bedroom on a work zoom meeting. Halfway through the call my 20-year-old brother slammed my door open, threw himself on my bed and said “please help me”.

As an autistic person with a low level of speech, I think it was the first time in my life that he had asked me for something, and my heart broke because I didn’t know how to help him, and I still don’t.

For my parents and brother, the Covid-19 pandemic has affected them so much more than many people can realise, but they are not alone, not even close to it, as thousands of other families across the country are also suffering due to the part-closure of disability day centres.

Currently, these day centres are only running at about a 40pc capacity.

Before the pandemic most users would attend five days a week, now most are down to two days one week and three the next.

According to a study conducted by Family Carers Ireland, 43pc of carers fear that normal services will not be restored after the crisis while 37pc worry about becoming more socially isolated.

There are currently over 355,000 family carers across the country. Of the 1,307 carers that responded to the survey, 95pc of which are female, 39pc said they worry about the financial costs and implications of the pandemic.

My mother is a full-time carer while my father cut down on his hours this year to be able to help out.

Catherine Cox, from Family Carers Ireland, said my parents are not alone in having to cut down hours due to centres being closed, and as more people are working from home they can be expected to work and care at the same time- which is incredibly difficult.

My brother currently isn’t the person I know him to be. Panic attacks, screaming, throwing things, breaking walls, cutting up his clothes and hurting himself are all regular occurrences.

It’s hard to explain his situation to people who don’t live with it, but take how anxious we all feel at the moment because of the pandemic. Now, imagine the anxiety you would feel if you couldn’t understand what was going on and all you knew was that your world has been turned completely upside down.

He can’t go out on his own, he isn’t able to use a phone to contact his friends, his only life outside of his home and his family is the day centre.

According to Catherine, day centres and services being closed is causing the most stress for Family Carers. Like my parents, the little freedom they had is gone and even planning a trip to the shop may involve a rigorous plan.

So, I ask her what carers have been screaming for the past year but haven’t been heard on, why can schools reopen but day centres can’t? Are the most vulnerable being forgotten about?

“Our government and our services recognise how important it is that children can continue their education, but why could they not come up with a solution similar to that for people with disabilities to get their services back?” she said.

“It really is sending a message that people with disabilities, whether it's children or adults, are not as important as children who don't have either a physical or intellectual disability, which obviously, I would hope is not the case.”

Even when day centres do fully reopen, so many adults with intellectual disabilities will have regressed and it could have a lasting effect on the mental health of carers.

In the Family Carers Ireland study on the impact that Covid-19 has had on carers, one said: “My mental health is suffering, I have always been strong and a solid ‘coper’.

“I have navigated many challenges in life but this is by far the most difficult. I have many skills and know how to keep busy and healthy.

“I keep in contact with friends and family and I practice mindfulness and I meditate. Despite possessing these skills, I feel weak, frightened and lonely most of the time.”

Another said: “I was already burnt out from caring 24/7 but now doing it without school, respite, home support and night nurses I’m totally exhausted and since we can’t see any other family I feel forgotten.”

My mother, Orla O'Loughlin, feels the same as these carers, explaining how nothing has been as hard as caring for her son over the past year.

“Since my son's hours have been cut in the last year he has regressed so much and it’s scary,” she said.

“I feel out of control, you can’t predict how he is going to react at any given time, we are all constantly walking on eggshells.

“I have always been quite optimistic and able to cope but in the last few months things have gone to a different level.

“He has managed his whole 20 years without medication but we have now had to put him on something as his behaviour is out of control.

“I feel isolated as most people don’t understand and I’m incredibly worried for the future.

“Not only has my own mental wellbeing been affected but it just breaks my heart to see him in such a state.”

According to Catherine, The HSE issues guidelines for day centres, but it is up to the individual service to decide how they run.

“The HSE issue guidelines to day centres, so they say here's the guidelines to follow and you do risk assessment, you look at your numbers, and based on that you implement a plan,” she explained.

“So then a lot of the day services and the providers would have gone back to the HSE, and said well we can't do this without extra funding, without extra support, resources, and so on."

Catherine added that she believes family carers have been forgotten about during this crisis and that they should be treated as frontline healthcare workers.

"Family carers are similar to those frontline workers in that some of them are providing intensive levels of care," she said.

“Some of their homes are like mini hospitals, they are doing the same level of care. Carers didn’t get PPE when that was a crisis, they didn't get priority testing and they're not getting priority vaccinations.

“So, I think that is a real failure on the part of our government and our health system not to recognise family carers as crucial frontline workers in this whole pandemic and not to support them accordingly.”

As I yet again sit in my childhood bedroom turned make-shift office, I hear my brother in distress and I worry about him.

I worry about what the next few months will hold for him, for my parents, and the thousands of other families suffering.

I am hopeful that with a vaccine on the way family carers and people with disabilities can see better days.

But, they’ve left behind since the beginning of the pandemic, and it will be a hard one for them to forget.

Online Editors