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Mother fears son won't get respite care until she dies

Nicola Lawless’ 19-year-old son Ben has a severe intellectual disability.

FB_IMG_1467330685861 Ben Source: Nicola Lawless

A MOTHER HAS called on the Health Service Executive (HSE) to make more respite care beds available to adults with intellectual disabilities.

Nicola Lawless’ 19-year-old son Ben is profoundly intellectually disabled. He is almost non-verbal, needs 24/7 care and is incontinent.

He received respite once or twice a week until he turned 18 last year.

Nicola (39) said she and her family held talks with the HSE and their respite service provider during the two-year period before Ben turned 18 in order to to plan his transition from using child services to adult ones.

Nicola, who lives in Castleisland in Co Kerry, contracted swine flu earlier this year and ended up on life support after complications arose. She developed pneumonia and her organs started to fail. She was transferred from University Hospital Kerry in Tralee to Cork University Hospital.

The mother-of-four stabilised and said she was told she should spend two months recovering in hospital. However, she had to come home after just nine days to help her husband Gareth look after Ben after they were unable to secure emergency respite care.

‘Appalling’

Speaking to TheJournal.ie this week, Nicola said the situation is “very difficult”.

She said she recently met with two local HSE representatives who were “very sympathetic to the case and very embarrassed they can’t help”.

Nicola said they told her lack of funding is the main reason her family cannot access respite care for Ben. She said she was told the HSE would step in and find emergency care if she died, adding: “It’s just appalling.”

For an organisation of its size, there has to be a way that they can plan better.

Nicola said Ben, her second eldest child, is “lovely, happy and friendly” but requires round-the-clock care, something that is particularly difficult for her since her illness. She can no longer work so Gareth is doing extra hours at the weekend to bring in more money.

I’m physically not able. Ben is a 19-year-old man in every aspect bar mentally.

Nicola said the weekly respite was hugely important to Ben and the rest of the family.

IMG-20160701-WA0013 Nicola and Gareth Source: Nicola Lawless

“It was really important for him and us. He wasn’t housebound all the time, he got to go out and about with his peers. It was good for the family too as we got to do things Ben didn’t like. You can’t bring him shopping, for example.”

Health problems 

Nicola said the family was offered a home care package but this is not suitable.

Ben is very loud. He screams a lot and does an awful lot of banging when he gets excited, and he gets excited when people come into house. That’s not conducive to me getting any rest.

Nicola said that since her health scare her hair is falling out and she has memory and concentration problems.

“I don’t know what my lung capacity will end up being, I get tired very, very quickly.”

Nicola told us that, when she is not looking after Ben, she spends her time contacting the HSE, politicians and media outlets in a bid to get help for Ben.

TheJournal.ie contacted the HSE, the Department of Health and Finian McGrath, junior minister with responsibility for disabilites, for comment.

A spokesperson for the department told us: “This is a matter for the HSE.”

Lack of funding 

The HSE said it cannot comment on individual cases.

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In a statement, the body told us there are just 12 beds available in the Kerry area to provide respite services for adults with an intellectual disability. These beds are provided by St John of Gods at The Arches (four beds), Abhaile (two beds), Kerry Parents & Friends at Brook Lodge (three beds), Haven (two beds), Tearmann (one bed) and Glebe (one bed).

The statement noted that the delivery of residential respite services has been impacted by the requirement to comply with Health Information and Quality Authority (Hiqa) standards.

It added that the following issues have also played a role in the decrease in services available:

  • Residential houses not being used for respite as they had been previously;
  • Unoccupied resident beds no longer suitable for respite;
  • Some respite beds required to meet residential needs of individuals.

The HSE said the remaining residential respite services for people with disability remain under pressure due to:

  • No new additional capacity available – new adult applicants are unable to access them since 2013;
  • The number of children graduating into adult service is greater than adults leaving the service.

FB_IMG_1467330696203 Gareth and Ben Source: Nicola Lawless

The statement added that the HSE acknowledges the current level of provision does “not meet the need for increased respite facilities”.

The expansion of respite services for people with disabilities is recognised as essential to enable families to continue to care for individuals with disabilities and in particular significant disabilities. The HSE continues to work with agencies to explore various ways of responding to this need.

“For example, we are working closely with Kerry Parents & Friends on the purchase of a property that will eventually be a respite unit for people with disabilities.”

Alternative arrangements 

The HSE said that the Cork and Kerry Community Healthcare Organisation “sought additional funding as part of the 2016 estimates for increased provision of residential respite services”.

“However, additional funding provided for disability services was only available to cover increased costs in meeting the Hiqa standards in residential services. There was no funding provided to expand residential respite services.”

The body added that €1 million has been provided nationally for alternative respite services including host family arrangements.

The HSE is continuing to work with the parents group and with service providers to continue to explore all options in relation to the provision of respite for these young adults.

When questioned about respite care services in the Dáil recently, McGrath said the government is “committed to providing services and supports for people with disabilities which will empower them to live independent lives, provide greater independence in accessing the services they choose, and enhance their ability to tailor the supports required to meet their needs and plan their lives”.

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About the author:

Órla Ryan

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