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Cancelled respite during Covid: 'There's no respite, no service at all, no activities. It is very stressful'

The cut in services has placed additional pressure on families.
May 1st 2020, 5:17 PM 23,903 8

SOME RESPITE CARE services have been cancelled amid the Covid-19 pandemic, leaving vulnerable people and their families without much-needed services.

Although this is a necessary precaution, as many of those needing respite care are also in the at-risk group for Covid-19, this has placed additional pressure on those needing care and their families at a time of great stress for everyone.

Respite can be given either at a centre where people with disabilities can visit or stay, or in the form of visits to the family home, where a carer will take care of someone for a few hours a day.

Whether a person requires respite care depends on a number of things. A person may have an intellectual or physical disability that requires some care – another factor may be that the person’s family carer needs more help as they age.

“Not everyone benefits from respite, but for those who do, it’s a godsend,” Liam O’Sullivan of Care Alliance Ireland said.

“For many families, they don’t look for respite until they really need it, and that could be many years into their caring journey.

But definitely what we’re hearing is lower availability of respite – I think there’s definitely more being cancelled than is being provided.

For people with intellectual disabilities, routine is often key. It’s now left to their parents or other family members to give them some sort of routine amid the lockdown – without any respite support.

O’Sullivan said that the organisation had set up a Facebook group to support carers during the Covid-19 pandemic. On one post discussing respite care, he said that 80% of the comments claimed their respite care had been cancelled.

Catherine Cox, head of communications at Family Carers Ireland called on PPE to be given to family carers, and carers to be made part of the priority group for testing.

“Family carers need to be named as a vulnerable group,” she said during an RTÉ interview.

That is so important because if a carer gets tested, if they get their results back quickly they can continue caring. In one case I have a carer waiting three weeks for verification of her test, and it took a long time for her to get that.

“They need contingency planning, What happens if a carer or the cared for person get Covid-19 in the home?” Cox asked.

‘Inventing a day everyday’

Caroline Roche is a carer to her daughter Helena, who is 25 years old, and has a dual diagnosis of Down Syndrome and Autism.

She’s already on anxiety medication, and does know about the virus: if Caroline mentions it, Helena will say ‘don’t say that word, I hate that word’.

“Helena thrives on routine, I would describe her as a walking calendar,” Caroline told TheJournal.ie

“She knows everything that’s going on everyday. She was doing two days in a special programme in DCU for people with Down Syndrome.

“Monday night she would have had her art club, then Wednesday to Friday she was in her day service from 9am-4pm. Thursday evening she went to drama and dance classes for people with intellectual disabilities. On Saturday afternoon she had another club, and then, everything stopped.

“She would have respite once a month. We had her booked for respite on 8 April because it was my husband’s 60th birthday. They usually don’t allow you to book respite but because of the circumstances, that he was 60, and recently recovering from cancer, they had given us two days.

That was cancelled, there’s no respite, no service at all, no activities. It is very stressful. The first thing she asks me in the morning is ‘what’s our plan today?’ I’ve had to become activities coordinator now as well as mother-carer.

Coupled with that, Caroline worries about what would happen if Helena contracted Covid-19; people with Down Syndrome are in the at-risk group, as their bronchial tubes are often narrower, which makes them more prone to respiratory conditions.

“She’s quite healthy, but she did have pneumonia. I worry terrible that if she did get it and she was in [hospital] and we couldn’t go to see her, she wouldn’t understand all that. I have the anxiety of people in hazmat suit and her just wanting [her mammy].”

At the moment, Caroline is trying to “invent a day everyday” with activities for her daughter. 

“We’ve had very little contact with our service provider, they stayed on for one extra day after the schools closed. We had a Zoom phone call a couple of days ago, and a package with activities but they were child-like, they weren’t age appropriate.”

Instead, Helena is doing arts and crafts at home, FaceTiming her best friend once a day, watching DVDs with her mother, and going for walks to the park – Caroline says she’s sincerely hoping the parks aren’t closed, as they’re the only bit of routine Helena has at the moment, and she gets agitated without it.

Caroline says that she’s also worried that this may become the “new normal” for her daughter, which is a worry in case she regresses.

“We had as a problem at one stage, that my daughter didn’t have a service for a year. And then when we did get a service for her, it took a long time to get her to go because she gets so set that this might become her new normal.” 

She says she feels guilty if she leaves her to sit on the sofa to watch television, as she know’s “it’s not good for her”.

But she also doesn’t know what can be done because “I’m terrified of her catching the virus”.

I know it’s a big problem for us – but I don’t have the answers.

The HSE advice

Speaking on This Week on 19 April, HSE CEO Paul Reid said that “his heart goes out to carers throughout the year in normal circumsances”.

He thanked them for their work and called them “unsung heroes” in how they provided “fantastic” care.

Reid said they were putting supports in place for carers who can self isolate elsewhere if they can’t self isolate at home.

He said that the task of finding alternative carers was “not easy, and it’s a difficult one”.

There’s a range of supports we want to provide for them, [but] it’s difficult.

On providing PPE to carers, Reid said that normally they would require 200,000 masks a day, which has been ramped up to over a million a day. Despite this, he said that carers would be provided with masks and other PPE, along with nursing homes and long-term residential settings. 

In a statement to TheJournal.ie, the HSE said in a lengthy statement that due to the Covid-19 pandemic, it “had to reassess its operation of Home Support Services nationally, to ensure that the assessed needs of those client’s with the highest priority are met”.

The HSE, working with its approved home support service providers are endeavouring to maintain essential support services during this unprecedented public health emergency.
In this context, the HSE has set out a prioritisation process for home support, which looks at delivering a service based on priority need across 4 priority categories.

“As a result of that review of prioritisation, a number of clients with lower priority needs may have their home support service temporarily ceased or reduced with the support of family members and/or alternative forms of volunteer-provided local supports.

“In these cases, each client has/will be contacted to advise of the assessment and decision, alternative support available and assistance given to ensure that essential requirements continue to be provided.”

The HSE stressed that the reason it prioritised the service was in line with the public health message, to reduce numbers of people entering homes and risking the spread of the virus.

The HSE has also begun a review of all service users who had service either ceased or reduced or where people ceased the service themselves of their own choice, so as “to ensure that their circumstances have not changed significantly”.

“The HSE acknowledges the valuable role of carers and families, home support workers and providers across the services in supporting older people and their care groups throughout this difficult period,” a statement said.

The HSE has published a document to help home carers provide alternative clinical/therapeutic interventions.

It advises home carers to “implement an alternative model of support pathway”, and to “develop a plan that takes into account appropriate use of available locations and staff”.

Those with little external supports, with complex medical needs, or who witness behavioural changes in the person with disabilities are among those who should be prioritised, the advice says.

Other advice it gives includes:

  • Provision of parent support groups, parenting programmes or similar interventions through platforms such as Zoom or Facetime
  • Regular, scheduled telephone sessions with service users and / or families by an agreed ‘key point of contact’ to provide advice, reassurance, training, demonstration or support.

The HSE also advises home support managers and healthcare support assistants, as well as disability managers to contact their managers if they display symptoms:

“Current information suggests that Covid-19 can spread easily between people and could be spread from an infected person even before they develop any symptoms.

For these reasons we suggest greater attention to cleaning and general hygiene and recommended social distancing measures. All care/ support staff are requested call their managers before they go to work if they have a cough, temperature or shortness of breath.

It also advises on how to put on and take off PPE correctly.

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Gráinne Ní Aodha

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