'The distance is a problem': Parents of adults with intellectual disabilities forced to drive for hours to visit

Close to 200 people with intellectual disabilities are sent to residential placements more than 100km from their home, something parents say is an added strain on an already traumatic situation

Cork East Social Democrats TD Liam Quaide: 'The Government needs to stop treating long-term exile as an acceptable way of life for people with an intellectual disability.' Picture: Cathal Noonan

Avril* is a mother in her late 50s living in the east of the country. She and her husband have two adult children with intellectual disabilities. 

A lifetime caring for two of the most vulnerable citizens in our society has recently been complicated even further.

Avril is one of the hundreds of parents whose children have been placed in a residential service miles from their home.

Her daughter Helen* is now living in a large house in the countryside several counties away, paid for by the HSE. Driving to see her once a week takes just under two hours each way.

“At the moment, we’re both driving and able to handle the journey so it’s ok. But the distance is an issue definitely,” she says.

Helen, in her 20s, has a number of conditions, including autism, ADHD and an intellectual disability. She had become increasingly hard for her parents to handle living at home, making some sort of residential placement something of an inevitability.

Last week the Irish Examiner revealed more than 600 of the close to 9,000 people living with an intellectual disability in such a residence are placed outside the county where they grew up, or where their parents or support community is based. 

At least 193 of them live more than 100km from their home. At least 280 distance placements resulted from an emergency situation, such as a parent or primary carer dying or becoming incapacitated, where a placement had to be found, anywhere, immediately. 

More than 300 have been living distant from their home locality for more than five years.

“The distance is a problem. With Helen’s behaviours as they are, it means that even when she comes home after an hour she is ready to go back, and vice versa,” says Avril.

"If she was nearer we could have her home more times a week, which would suit her needs better, but by the time she gets back she’s up to 90. So for now it’s once a week that we’re seeing her."

Avril and Helen’s names have been changed for a reason — despite the long distance involved, getting a placement of any sort is so difficult that no parent the Irish Examiner spoke to was willing to be identified for fear of being seen as biting the hand that fed them.

“There are people from Cork in Kildare. People from Kildare in Tipperary. People from Waterford up in Dublin,” one Dublin-based mother of a son in a placement in the south of Leinster said.

Sometimes it seems to me the HSE is actually offering places further away from home in the hope that families will hold onto their child a little bit longer.

“Getting a residential placement was very, very hard. We begged for something closer, but the situation was we either took what was on offer or God knows when or where we would have been offered another. We had to take it,” Avril says.

There is little sign it will be possible to move Helen closer to home in future.

The figures on intellectual disability placements were released to Cork East TD Liam Quaide after months of queries. The figures eventually returned are inconsistent at best, and non-existent at worst. But one thing is clear — there are very few plans in place to bring children placed at a distance back closer to home. Just seven such plans have been actioned countrywide over the past three years. A further 17 are in place for undefined dates in the future.

Derval McDonagh, chief executive of Inclusion Ireland, is critical both of the emergency situations that often lead to distance placements, and the lack of planning that goes both into placements generally and efforts to return those placed at a distance closer to home.

“We should never be in crisis-management mode when it comes to the provision of the most basic human rights like the right to a home. It’s about more than bricks and mortar, it infringes on how people feel about themselves,” she says.

She says the Government needs to follow through for disabled people in the next budget and deliver “a really significant ramping-up of planned support packages”.

Together with forward planning, Ms McDonagh argues creative thinking could go a long way to helping families caught in such a situation and preventing their loved ones from being placed at an impracticable distance from them.

“For example, if a person wanted to stay at home, if a house could be left to them then maybe the State could step in. There are opportunities there if we’d just listen to people and their families. But because of the constant crisis approach, there’s a very, very narrow view of how people live their lives,” she says.

“If you’ve met someone with an ID [intellectual disability], then you’ve only met one. Everyone is unique and has unique needs, but the same fundamental principles should be there — the right to a home, to live near family. If you don’t have those rights, then you’re stripping away humanity, and that’s just unacceptable.”

“The Government needs to stop treating long-term exile as an acceptable way of life for people with an intellectual disability,” Mr Quaide said.

“They need to map where people are living, publish what they are paying different services, build local capacity, and set out a clear plan to bring people back close to family, community and familiar supports,” he added.

A HSE spokesperson said the health service was “working towards developing a more planned and responsive system of service provision to meet the residential needs of people with a disability”.

They said residential placements “are distributed on a population basis, equitably across the country”, while for aging carers “their adult child who requires a residential placement will most likely move into placements that become available in facilities managed by local disability providers”.

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For now, Avril and Helen’s situation is just about manageable. That may not always be the case.

“The other bind is that we may not want to move her back. It took six months to settle Helen. She is happy now,” Avril says, while acknowledging the care afforded Helen in the for-profit centre where she resides has been “first rate”.

“In 10 years’ time, we may be a lot less able to drive, and if were to move her it could be even more traumatising for her. We can’t move nearer because we have another child to care for. The nature of her condition, a visit is something that has to be very quick. So the reality is we’ll see her less and less, and she will see nobody else,” she says.

“If I'm being honest, what I see is us drifting more and more out of Helen's life to a stage where she won't really want to come home as the journey and overnights will just get too much for her and ourselves. It's hard to think about the future.”