SOLUTIONS – Des North says revisit policies and provide more respite

Des North is a senior manager with St. John of God (SJOG) in south-east Dublin who oversees the delivery of services for people with an intellectual disability. He believes it is time to re-examine national policies and strategies devised since Ireland signed up to the UN Convention on the Rights of Persons with Disabilities.

Amidst chronic underfunding, he believes it would help families if there were more respite homes. It would also help providers if there was less red tape regarding residential housing standards. And finally, he says the policy of decongregation needs to be discussed.

Des has worked in the sector for 27 years and since 2005 with SJOG, one of the largest of the many not-for-profit organisations that provide such services. He suggests that revisiting policies is a practical response the State could take now to the crisis for families needing residential care for adult children with intellectual disabilities. It would lead to more families being looked after than the system can currently support and care for and better value for money.

SJOG in Dublin South East covers an area stretching from Ringsend in Dublin city to Bray in Co. Wicklow and it provides day, respite, residential and other services. While it has 120 residential beds, there are 138 people with an intellectual disability on its waiting list, 35 of whom Des describes as “extremely in need, virtually emergency cases”.

His heart goes out to parents on the waiting list.

“It’s absolutely shocking when you see parents aged 88 and 91 and have a 65-year-old adult child who they are struggling to care for and who has significant behavioural needs on a daily basis.”

Part of his role is to communicate with families, often to say there is no place for their adult child at present.

“We are having tough conversations with families on a continuous basis. We try to stay in regular contact with them so they don’t feel forgotten,” he says.

The burden on families to provide care while the system is in crisis is largely unseen.

“When someone is living on the streets and is clearly homeless, the State works with them to try and provide accommodation. However, a family caring for somebody with an intellectual disability and needing support is unseen, and responding effectively can in some ways be avoided.

Burden leads to desperate actions

“That’s why families sometimes go nuclear, like the mother who recently brought their loved one to an A&E and drove away. Parents become desperate to make the State face up to its responsibilities,” he says.

Some people get driven to the edge.

“I know families who have said to me that if this does not improve… [Editor – specific threats of suicide omitted]. That has happened on more than one occasion,” he says.

“On occasions, we are glad the HSE is able to ring private sector companies and ask about openings.

“When we don’t have a bed, or a suitable bed, that person still needs to be accommodated somewhere and the private companies usually can provide. They are a godsend in certain situations,” he says.

Respite is key

“Respite is key,” he emphasised. “I have heard families say ‘We don’t need our child to have a full-time residential place, we need a break’. And if there was more respite places available, people would be able to stay at home with their parents for longer.”

He gave as an example a five-bed respite house for adults.

“That house is full every night, seven days a week, pretty much all year, and it provides a great service to the community. We’ve probably a hundred families who benefit from that particular house.

“We could have another respite house open in three months if we got the funding. We would happily double the amount of respite we provide. Apart from being a partial solution to the numerical challenge and the financial challenge, people just need a rest – and they want to spend time with their other children who they’ve possibly neglected.”

Want to do more

“In my area of responsibility, in Dublin South East, we support around 450 people with an intellectual disability. We have 520 full-time staff and about 50 volunteers. We have 22 day services locations and 24 residential locations.

“We lobby and advocate for people with intellectual disabilities with the HSE locally and nationally, to try and unlock funds. We want to do more.”

Decongregation needs to be revisited

“Decongregation makes a lot of sense, but it needs to be looked at again,” he says, pointing to push and pull factors – the sky-rocketing cost of house-building and the emerging trend of co-living among other groupings in society.

“There’s no doubt that the State is going to find it very difficult to continue to provide residential places for people, like they have been doing. The expense is phenomenal. For example, after you buy it, a four-bed for people with disabilities can cost approximately €400,000 per year to run,” he says.

Considering the mounting annual costs, it could be timely for the government to revisit their policy ‘Time to Move on from Congregated Settings’, published 15 years ago.

Some people would prefer congregated settings

Moving groups of people out of dormitory accommodation in institutions to three- and four-bed houses in community settings was well-intentioned, but expensive. Des says the policy has been to reject any housing that placed 10 or more people together.
However, Des believes that clustered co-living where people have the independence of own-room or apartment accommodation should be considered. For example: clusters of six-bed and eight-bed houses, and apartments where people are grouped together, where staff can go between each apartment, yet the residents are able to live independently.
“We have great risk assessment processes now that we didn’t have before,” he points out.

“The choice of the service-user is very important here,” he says.

Des is concerned that resource allocation for decongregation leaves next to no resources for people living in their family home who need residential places.

Communal living

“Some people would be horrified that this would be considered for people with disabilities, but I would say one needs to go back and have a discussion about every option again,” he says.

“The issue around policy, in my view, is that it doesn’t take into account the subtleties and the nuances of human beings. There are plenty of people who would love the idea of living in a shared accommodation with like 20 beds and communal areas. It would be perfect for them. You’ve got your own privacy, your own bedroom, your own bathroom, but you still have access to staff, to people that you can meet, hang out with, watch TV with, if you want.

“There is niche co-living accommodation now for students and others, particularly in Dublin, where they have shared cooking facilities and social facilities. It can work very well for certain people.”

UN Convention

The UN Convention on the Rights of Persons with Disabilities (UNCRPD) is aspirational. As an Oireachtas Committee on Disability Matters heard recently from another worker in the sector: “While Irish policy and legislation affirm the equal rights of disabled people, a significant gap exists between these affirmations and practical reality.”

Des says: “We all understand and appreciate why the Declaration was written and it is important that people’s rights are enshrined in law. However, policies need to be looked at again, because we’re spending money foolishly at times.”

Recently, SJOG wanted to open a new house, but were delayed until certain – arguably unnecessary – fixes were made.
In other cases of over-zealous regulation, tables have to be replaced because of scratches, or lino has to be replaced because of a tear – both are seen as infection control issues. A washing machine has to be moved from a kitchen to an outdoor shed.

“All of these things make sense in themselves, but they become serious issues for service providers, because we end up spending a huge amount of money and time fixing these when we could be providing more respite.

“It’s very simple. If we want to create new places for people in need, we need to be more efficient with the level of resources that we have. We have to work smarter,” he says.

Up to the Government

Whether or not we review policies is not for the sector to decide.

“The power when it comes to revisiting policy documents rests with the State, so it’s the State that needs to lead out on a review of the legislation, the regulations, the policies, the guidelines, the standards.

“Support groups and service providers can clamour for change, but they can’t action it. The State can action it. The minister can come out in the morning and call for a review of policy X or Y, and we’re up and running.

“A Citizens Assembly would bring sensibility to these discussions because the man or woman in the street tends to have a very good grasp of what’s needed and they tend to also have a very good grasp of how far a euro can go.

“In my view, a government-led citizens assembly looking at these issues could go a long way. I think we would seriously benefit from an in-depth review of all the policies and strategies we are following.

“Additional respite beds are vital in the sector and ring-fenced resources for every county are needed immediately to facilitate this development.”

“New funding announced by Minister Norma Foley is very welcome, but should be protected for non-emergency cases,” he added.

Our values: Hospitality, compassion and respect

Across the country SJOG provide day, respite, clinical and residential services to around 3,000 people with intellectual disabilities.
“That’s a phenomenal amount of people and we do a really good job,” said Des.

In regards to St. John of God more generally, he said:

“The reason I work for St. John of God is our values. They are hospitality, compassion and respect and in our line of work they are absolutely key. For me, what makes St. John of God stand out is we do espouse our values. They are important. And when we start to drift, we bring ourselves back to those values. They govern our service and that’s why we’re good at what we do,” he added.

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