Lack of respite care leaving families at breaking point

Some families caring for relatives with disabilities have said a lack of respite services in the pandemic has left them struggling to cope.

When the pandemic first hit, facilities were closed, or admissions were reduced and delayed to prevent the spread of infection. Services have not returned to pre-pandemic levels.

The HSE said Covid-19 had a serious impact on the respite system and a phased resumption of services is now planned.

However, some families say they are at breaking point and may have to place their relative in long-term residential care.

Lourdes Sanchez lives in Co Kildare with her three children, aged six to 19, and her husband Dave. Their middle child, Conor (16), has a rare genetic disorder.

Ms Sanchez said Conor requires the care of two adults around the clock.

"He lacks in communication and he gets very frustrated," she said.

"He can present with challenging behaviours. He has an intellectual disability and he wouldn't have any sense of safety."

Ms Sanchez said her family is physically and mentally exhausted.

"When he goes on respite it gives us a chance to have a break," she said.

But Ms Sanchez says accessing respite has been extremely difficult since the pandemic began.

The family situation is complex, as Conor's father Dave has multiple sclerosis and a recent relapse means he lost some mobility.

Ms Sanchez says in 2019 the family was offered six nights respite per month, but that stopped when the pandemic hit and it has not been reinstated to anywhere near the same level.

"We have been told that the current provider only has one bed available for 50 children. So, at that rate we are never going to have the six nights re-established," she said.

The stress is so great, she said, they may reach the point where they are no longer able to care for Conor in his own home without more support from the state.

The HSE said respite capacity throughout Dublin south, Kildare and west Wicklow was significantly affected by the Covid-19 pandemic.

"Many respite staff were redirected to residential services to fill vacancies to ensure safe levels of care for service users as there was a significant absenteeism due to Covid," a spokesperson said.

"Where day services were stepped down, respite staff may have been redirected to provide in home supports in residential services and within the persons home. In some incidents where respite houses were open multiple admissions were prohibited, reducing the number of admissions and increasing the average length of stay.

"There were also significant outbreaks of Covid-19 in respite houses resulting in closure and further reduction and delay in admissions."

'I feel taken for granted'

Carers across the country are finding themselves in a similar position to the Sanchez family.

Marion O'Sullivan lives in Cork city with her elderly brother Stephen Mackey, who has special needs.

"Carers are facing many issues," she said. "But the most pressing is respite. I'm really annoyed. I do feel we’re taken for granted."

Ms O'Sullivan said Stephen regressed during lockdown and lost some skills, such as the ability to tell the time and dress himself. She said she is unable to leave him alone for more than a couple of minutes as he has little sense of safety.

In the ten years prior to the pandemic, she applied annually for a week or two of respite care for Stephen in the COPE foundation in Cork. She was successful on five occasions, but has had nothing since 2019 and said the prospects for next year are not looking good.

Ms O'Sullivan believes carers’ work saves the Government money and she wants the State to provide 20 days’ respite per year for carers, in line with annual leave entitlement for most other workers.

"It would give me a boost and give me the energy to look after him longer. For a longer period of time, I’d be able to keep him at home, instead of going into a [residential care facility]," she said.

Cork Kerry Community Healthcare, which comes under the umbrella of the HSE, said it recognises the value and importance of respite care and will do everything possible to resolve issues in accessing respite.

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"We sincerely regret the impact on any person with a disability and their family in any delay in accessing respite, but unfortunately Covid-19 has had a serious impact on all respite services across Cork and Kerry," a spokesperson said.

"Some services offering respite had to stop offering services entirely, and in other cases services had to be offered in different ways.

"We are working with the agencies who deliver respite services, and together we are planning for a phased resumption of services as well as alternative ways of delivering respite.

"As Covid-19 means that respite services will have to be delivered differently, both ourselves in Cork Kerry Community Healthcare and service providers will engage with people using the services, so that we can all plan for these changes.

"Unfortunately, it will be difficult to increase respite levels in the short term. Respite in the past generally meant that a number of people came from their own homes to a centre in order to access respite, and obviously measures to prevent the spread of Covid-19 makes this difficult.

"We do not have a timeline for when all services will be able to resume fully."

But some families say difficulties in accessing respite existed long before the pandemic.

"Whether or not we had this pandemic, we’re still in the same pandemic of no respite," said Sinead Tighe.

"It’s not changed from before the pandemic, it’s not going to change after and for [a lot longer]."

Ms Tighe and her family live in Tallaght. Their 14-year-old son Daniel has severe physical and intellectual disabilities.

She said they have never been very lucky accessing respite care and she has to constantly advocate for their family’s needs.

"You’re tirelessly working away on emails and asking," she said.

"You’re highlighting your situation and trying to show the extreme gravity of being at home. Getting slapped, hit, head-butted – you do need a break."

The respite house Cheeverstown now says it is in a position to offer respite services to the Tighe family "from early 2022".

A spokesperson said the service regrets being unable to provide the level of supports it would have liked this year, but is planning to increase respite supports to many families in 2022.

However, Ms Tighe still has concerns it may not be enough and her family will have to advocate for more services as Daniel grows older, only to be told there is not enough funding.

All of the families point out that spending resources earlier in the life of a person with a disability may prevent the need for more funding in the long term.

"Sometimes I get the feeling that decisions are made purely thinking of economics rather than a family situation," said Ms Sanchez.

"If you spend the resources early, you can help them so much. And maybe, as they grow and become adults, they will need [less] resources, because they can manage much better."