Finding suitable services for their sons and daughters after leaving school is probably the biggest worry for parents of 18-year-olds with autism. Although the school years can be challenging in themselves, reaching adulthood brings a whole other set of more complicated issues which can be managed much better if there is a structured set of daily meaningful and appropriate activities.
Putting disability services in the heart of communities is part of current HSE planning so I shouldn’t be surprised to find a new centre for young adults smack bang in the middle of a new residential and commercial development in north Dublin still only partially inhabited.
Natalie Creevey, the day services manager of the Praxis Care centre describes the new centre as a "service without walls". Although technically speaking, the new building in Clongriffin, Dublin is where these young adults with disabilities go every day, their focus is on activities in the community.
The Praxis Care centre opened in summer 2016 and has 17 service users, all of whom have autism. Each person using the service has support in planning and carrying out their weekly schedule of activities. The aim is to help them become more independent in daily household tasks (making tea, ironing, filling the dishwasher), personal care (showering, shaving etc) and travelling to other activities by public transport. The centre also has a multi-sensory room with relaxation spaces for time out if people get overwhelmed in any way.
When the Irish Times visits, Kevin O'Sullivan (19) and Aaron Leonard (18) are busy making a scarecrow for the allotments in Malahide which Praxis Care users have access to. "Every Tuesday, we go there.We have planted cabbage, peas, turnips, potatoes, onions and a blackberry bush." O'Sullivan has been using the Praxis Care services since summer 2016, having had a two-year gap since he finished in another service in 2014. "We cook, walk, go bowling, swimming and the library," he says.
Leonard says he feels better since he started using the Praxis Care services. “I feel more like myself here. Everyone is really nice and pretty understanding. I didn’t like school at all. I was in an ASD [autism spectrum disorder] unit after the Junior Cert and I couldn’t cope there.”
Managed by the Northern Ireland-based charity, Praxis Care, the Praxis Care services in the Republic are funded by the HSE. The centre at Clongriffin recently had its official launch by Minister of State for disability issues Finian McGrath. At that event, McGrath said, “since becoming Minister and indeed, throughout my years working with people with disabilities, I have always encouraged people to define themselves not by their disabilities but by their abilities. It is heartening and encouraging to see Praxis Care, through their work of supporting and encouraging all who use the service, embody that ethos on a daily basis.”
Jordan Taffe (19) is another user of Praxis Care in Clongriffin. His weekly timetable includes being a DJ on community radio station, Together FM, working in a St Vincent de Paul shop and various cultural activities in Dublin. "I like writing raps and music helps keep me calm. I've two younger brothers but in the future, I'd like to live on my own," he says.
Andrew Nolan, parent of Kevin Nolan who uses the services also spoke at the launch. He believes there is a benefit to being one of the first to move into the units. "I feel Clongriffin has something special to offer with its public transport access and modern approach to planning and village design. And, I think it's great that we are here early in the development to get ourselves settled before Clongriffin Village reaches full capacity. It will be nice for us to welcome our new neighbours in the future."
Natalie Creevey agrees that building rapport with local businesses will be a key to integrating the young adults with autism into the community. “I think some support groups for people with autism have done fantastic work on social media to promote better understanding of autism. But, it’s important to reach people directly and we would like to do information evenings for community groups about our work,” says Creevey.
She says that work experiences for those using the services will be crucial. “I’m talking about socially valued roles not paid employment. So we will be looking out for more opportunities to trial jobs in the future.”
Parents of these young adults are also encouraged to be actively involved in the new service. “As key people in our young adult’s circle of support, we need to continue to help with visualising, planning and implementing in order to help them progress to fuller and more inclusive lives within the community,” says Andrew Nolan.
Deirdre Carroll, former chief executive of Inclusion Ireland and now an independent disability policy analyst, says community-based centres such as Praxis Care are good models. "They are catering for people with complex needs in a modern facility in the community. Some people criticise the Hiqa inspections of residential centres, but I think they have been one of the most important contributors to improvements in services. Coming from Northern Ireland, Praxis Care services have been used to social services inspections for 30 years."
On a broader level, Carroll says, “we need to embed the values of person-directed services and fight to ensure and promote the human rights of people with disabilities. People with disabilities should expect the right to live as independently as possible with people of their choosing . . . with the essential adjustments for everyday living that allow them to enrol in school or college or day service, access the cinema, swimming pool or shops, travel by taxi or bus, visit their GP and have a short break.”
Long time coming
This mindset has been a long time coming for people with disabilities and many individuals have suffered along the way. But, according to Carroll, disability policy is now clear about the future direction.
“All disability policy points to the rights of people with disabilities to participate in economic and social life, not to be isolated or segregated and to be assisted to make their own decisions and have their voices heard. Nothing is perfect and issues will arise in the future but it’s all about working with people and giving them choices.”
Marie O’Sullivan’s son, Cameron (20), started in the Praxis Care day service in Clongriffin, Dublin, in September 2016. It was a big change for Cameron, especially because the family had recently moved to north Dublin from Kerry.
“Cameron has a moderate level of autism with other sensory needs. He attended an autism specific disorder unit in St Francis Special School in Killarney from aged six-18,” explains Marie O’Sullivan. The following year, he attended the Kerry Parents and Friends adult services in Killarney. “It wasn’t suitable to Cameron’s needs as there were adults with autism, intellectual disability and Down’s syndrome altogether. Cameron’s world was turned upside down when he moved from his cocooned school environment to that day service,” she says.
Finding ways for young people to transition from school to day services is always a concern and one that the O’Sullivan family feels strongly about. “Cameron didn’t have any transition. He just moved straight into the services. I think that is very cruel and shows lack of understanding for the specific needs of people with autism,” says O’Sullivan.
So, when the family decided to move to north Dublin, they were glad to find the Praxis Care day service in Clongriffin. “Cameron needs one-to-one support and a structured routine with a predictable weekly schedule. He enjoys swimming, going to the gym and horse riding. Once he knows what’s ahead, he’s quite happy. Otherwise he can be quite anxious and apprehensive,” says O’Sullivan.
As with many people with autism, Cameron is sensitive to loud noises and busy places yet he enjoys travelling into Dublin city centre on public transport with his support worker. “People are slowly becoming more aware of autism but there is still a lot of ignorance out there,” says his mother.
The fact that many people with autism don’t look like they have a disability can be a disadvantage in terms of people understanding their condition, she believes. “We need to educate primary school children that people can be different. Just because you’re autistic, doesn’t mean you don’t have a voice and can’t think for yourself.”
Shaunna Nolan is the mother of Kevin (19) who moved to the Praxis Care day services in Clongriffin gradually over a few months from a similar service in Drogheda. "Kevin really enjoyed being in Drogheda. He got involved in the community selling eggs from the allotment at the market, doing voluntary work in the Irish Cancer Society shop and the soup kitchen," explains Nolan.
However, the Nolan family live in Portmarnock so when the centre in Clongriffin opened, it became an obvious choice for Kevin. “It is just 10 minutes down the road from us which was particularly significant because we spent all of Kevin’s school years, dropping in to an applied behaviour analysis school [Abacus Special School] in Kilnamanagh, Tallaght,” says Nolan.
In fact, the Nolan family struggled to find a place for Kevin for six months after he finished school. “We looked in Tallaght, Dublin and Fingal and we were offered a place in Fairview but the funding fell through. It wasn’t until November 2015 that we got the place in Praxis Care in Drogheda,” says Nolan.
Kevin also has diabetes Type 1 which he needs support to manage. In the long term, his mother believes voluntary work linked to a day service will suit him best. “He gets great enjoyment from doing tasks. For example, he took great pride in baking buns and bringing them to an old people’s home and a women’s refuge. He loves being part of a group and it’s great to have the one-to-one support for him. He’s adjusted well to being here.”