A Self and Family Directed Adventure
Author: Jonathan Angus
With thanks to the author and Nova Science Publishers Inc for permission to publish this extract from the forthcoming book: Excelling in Life with Down Syndrome, Chapter: Self-Directed Support for People with Learning Disabilities/Down Syndrome.
This is the story of Fionnathan Productions, a social enterprise in Ireland run by a son, Fionn, and a father, Jonathan. Fionnathan can be pronounced like “Fear nothin” and shows that supported entrepreneurship, with a creative approach to financing, is a robust and adaptable way to a sustainable and meaningful career, underpinning a ‘great life’ for anyone. So, if you are interested in unique approaches to self-directed funding, person-centered employment and good stories then please read on.
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”
When Fionn was young, he attended Waldorf school, a worldwide educational movement known more commonly in the UK and Ireland as Steiner schools. His parents, Veronica and I, were both Waldorf teachers. Waldorf teaching is like teaching at a state school, but for half the money, twice the prep hours, one tenth the bureaucracy and three times the job satisfaction. The class teacher stays with a single group of children, leading them through their early years of school, for up to eight years. Needless to say, strong relationships develop between teachers and families, and particularly between the children themselves.
From the time when I was undergoing teacher training in California, where Veronica and I met, I recall one master teacher with many years’ experience say to us aspirants that, if we are so lucky as to have a child with developmental disability (and particularly Down syndrome) in our class, our life as a teacher will be considerably easier, and the benefits the other children will gain from being in the class so much greater. I carried that promise in my heart. I never got to have such a child in my class, but, even better, halfway through the first year of my career, I got to be the father of one.
He was born in Veronica’s home at the time, as she had planned, in Wicklow Town, near the Irish Sea. We had a large tub, literally a portable swimming pool, set up in the kitchen. The birth process was uncomplicated, save for the fact that he didn’t breathe when the midwife lifted him out of the water. She had to puff a few small breaths into his mouth to kickstart him. We were awe-filled at meeting this little fellow, our first and, he proved to be, only child. I was the first one out of the four of us to think of looking up at the clock on the wall, when it read 20 past midnight. We couldn’t be sure, so we had to choose, not just our son’s birthday, but his birth month as well. We agreed on March 31st – our baby was no fool.
Hours after the midwife had gone home, the sun was starting to rise. Just as I was drifting off to sleep, Veronica shared her concern that Fionn might have Down syndrome. I was suddenly alert. After thinking this through in silence, I agreed that he might have, but pointed out that it wouldn’t really make much difference, would it?
We didn’t get the official diagnosis until early July, more than three months later. I had flown after two weeks back to America, to finish teaching out the school year, and we decided that we would wait until my return to schedule the hospital visit, receiving the results. By this time, we had fallen in love with him, so Down syndrome was just one thing we knew about him, and we were not, as if often the case for parents, overwhelmed by the news.
Soon I had the opportunity to ask someone who lived for decades in a community with many people with Down syndrome what people with Down syndrome are like. She reflected silently, and then said, "The people I know with Down syndrome are more different from one another than the people I know without Down syndrome." Mind blown.
After that first summer, the three of us lived together in the US for a year, but Veronica felt called to return to Ireland, while I continued to work with my Waldorf class for another three years. Until Fionn got sick. During his six week stay in hospital, before major chest surgery, the lead doctor on his case told Veronica and I that we should prepare ourselves for the possible outcome that Fionn would die. How could a parent ever do that? Instead, we prepared ourselves for the possible outcome that Fionn would live. I left my job and moved to Ireland, and we got married.
After surgery, he made a full recovery, and he has never been sick like that again. Actually, that’s not true. He was sick very much like that two years later: another six weeks in hospital, another tiptoe past death’s door, another chest surgery (on the other lung), another recovery. But I’ll say no more about that here, because that’s another story.
I will say that Fionn was an absolutely amazing child. I know most parents feel that way about their offspring, and some of the proudest seem to be parents of children with Down syndrome, but Fionn is, dare I say it, special, in so many ways. He had a savant’s ability to remember songs. To be fair his mother and I would sing to him, every day, throughout the day. But some of those were seasonal songs, celebrating some festival that would be sung five or six times and then go unheard for a year. And he would be the first to sing them when the time rolled ‘round, without prompting, remember both words and melody. I estimate he knew about 1,000 songs by heart at age six. And this is just one example of his surprising skills. At age five, his mother brought him, clutching a toy duck, to his first speech therapy session. When she commented that she liked its orange beak, he replied, “It’s not a beak, it’s a bill.” And, by the end of the session, she had decided that her limited time should be spent with children who had greater needs than his.
I don’t mean to suggest that he has no learning delays. In fact, he probably has delays in most areas of learning, and plenty of those caused us great frustration and a bit of worry. Strangely, though, it was these delays that taught everyone else the most. He had a tendency to ‘elope’ heading off without telling anyone, often with a few toys in his red wagon (which, blessedly, slowed him down and made him easier to spot) that was scary and potentially dangerous. This led to our neighbours taking more of an interest in his welfare, because that’s just what you do.
He had delays also in learning how to lie, and to hide his emotions. Such brutal honesty can be exhausting, but there’s no better teacher into what being human really is. OK. I’ll stop bragging now.
Knowing of the gifts that Fionn brings with him to the classroom, and to many social situations, made it easy to advocate for his inclusion. Even to the High Court, where Veronica and I brought an ultimately successful claim against the Irish Government’s Department of Education to provide support for him in the school of our choice.
When Fionn was ready to transition from kindergarten into class one, the teachers in the Steiner school that he attended told us that he would need a classroom assistant, and that the relatively small school budget, made up through contributions by the parents, would not stretch to cover the cost of an assistant for an individual. They further felt that it would not be appropriate to rely on volunteers, as had been the case in kindergarten.
So we went to the regional disability coordinator and asked for a classroom assistant to be provided to Fionn, as we understood that Down syndrome is a condition recognised by the Department of Education to warrant a full time assistant in mainstream primary school. This request was refused, as his school was an independent school, without teachers provided by the Department.
In fact, primary schools in Ireland are franchised, over 90% of them to the Catholic Church; the rest to the Church of Ireland, with one school each run under Muslim and Jewish patronage, and a handful of multi-denominational schools. But these schools have a longstanding relationship with the government, including full state funding, while the Steiner schools at the time charged tuition fees from parents.
The Irish Constitution states that parents have primary responsibility for educating their children. It guarantees the parents’ right and duty to provide for their children’s education. As a result, when the Department of Education refused to supply a classroom assistant to Fionn, we sued.
In the final hour, the solicitors for the Department offered a grant to the school, in the amount of a Special Needs Assistant (SNA) starting salary, for all the years he would continue at the school, plus covering all legal fees and expenses. In addition, the Department of Education would be paying Veronica in arrears for the half a year she had worked as Fionn’s assistant while awaiting the decision.
The court-approved agreement allowed us latitude to set the tasks of the employee. We created a job description fundamentally different from a SNA employed by the State. Typically, their work is limited to ‘non-,teaching’ tasks, such as helping with classroom tidying, getting the child on and off the school bus, help with clothing, feeding, etc. Our belief was that the most significant assistance Fionn would require in school would be assisting his learning, directly. And, with the consent of the school, we had the opportunity to provide him with just this sort of assistance.
Effectively, Fionn became the most privileged child in Irish schools. His SNA would meet weekly with the lead teacher, and plan together a curriculum modified specifically to his educational needs. Mostly his assistant would support him in the classroom, but space was also provided for one-on-one work. And they would often leave the grounds, walking in the ancient oak woodlands that bordered the school. Some years his assistant took him horse riding or swimming during the school day.
When illness prevented him from attended school for a prolonged period (a far too frequent occurrence in his first year after the court decision, when he missed fully half of the days) his SNA would stay in the classroom while he slipped down into sickness, helping in the classroom with the other children, but compiling modified, concentrated lesson for later; and then, when he was on the upswing, visiting him at home with lessons preparing for his return to school.
There wasn't anything like a gender balance in Fionn’s class. At the beginning of his primary years, there were three boys and about a dozen girls. Halfway through their years together, there were only two boys. And by the end, as he puts it, “I was the last man standing”. If asked how he liked being in such a girl-dominant class, he says, “I loved it”.
Eventually, in his fourteenth year, it was time to leave the Steiner school. In previous years, the curriculum could be readily tweaked by his teachers and his classroom assistant, and augmented at home by us, so that his full participation made sense. Eventually, though, too much of the academic instruction in the classroom was missing the mark for him. Fionn was socially included, but more and more academically excluded. We decided to try a placement in ‘special school’. This proved challenging on two fronts: one logistical, the other pedagogical.
The length of the journey on the bus was an unpleasant surprise. Given that the distance from our front door to Saint Anne’s School was 40 km, which could easily be traversed in 35 minutes driving by car, we assumed the commute time, adding multiple stops along the way, would be something like 45 minutes. We hadn’t accounted for the fact that special schools have such a large catchment area, because there are relatively few of them. The bus would zigzag all around the region. Fionn was the first on in the morning and the last off in the afternoon, for a 90-minute journey each way, three hours round trip. Boredom led to mischief.
One day, Fionn was placed next to the driver for misbehaviour. As they were driving down the road, Fionn reached over and grabbed the steering wheel, and gave it a tug. I don’t think he meant harm – it was the only way he could find to voice his frustration in the moment. The bus veered out of lane momentarily, and the driver was fortunately able to right the course without mishap.
He told us later that, if ever it happened again, he would have to report it, and that would lead to not only Fionn’s banishment from this particular bus, but having his travel pass, which provides free travel on buses and trains all across the country, revoked for life.
The other unexpected issue was bullying. On the first day of school, as he was alighting from the bus and approaching the doors, he caught a punch square in the face, bloodying his nose. We never learned the reason for this violent welcome to the school, if there was any reason to it. A few tears when he got home and told the story, and it was forgotten. That, or a deep trauma that will affect his well being for years to come. One or the other of those.
We didn’t become aware of the chronic and targeted nature of bullying at the school until the middle of the second year. In a meeting with the principal, we were told that, as obvious animosity was being shown by one boy toward Fionn, the staff had all been instructed to keep them apart, even by physical intervention when they would pass in the hallways. Physical altercations was a routine facet of school life, as, I’ve come to believe, is the case in the culture of most ‘special schools’.
The student population of such schools comprises two very distinct groups; children with general learning difficulties; and children with behavioural, social, and emotional difficulties. Members of the latter group can sometimes be the cleverest children in the room – running circles around the teacher, showing great facility in social manipulation. While children labelled with developmental delay are typically at the other end of the spectrum, lacking any guile. The only thing they have in common is that they are often considered uneducable in a mainstream setting. Putting these two groups into the same segregated classroom is like putting goldfish in a tank with a kind of fish that likes to bully goldfish.
Sadly, the reason for this is economic. Society isn’t willing to spend the resources to educate each group in appropriate settings, the most appropriate being mainstream, non-segregated classrooms, with adequate educational support for all.
During the summer after Fionn had attended St Anne’s for two years, we shopped for a change, visiting three mainstream schools in the general area. Two of them, about which parents had praised their inclusive cultures, were focusing their inclusion efforts on children diagnosed on the autism spectrum, as there was accessible funding for such ventures, and new students with additional needs but without such a diagnosis could not be catered to. (Although they didn’t put it in exactly those terms to us, one learns to hear the unspoken.) At summer’s end, Fionn enrolled into the local state secondary school, where he studied happily in a less academic, more hands-on, side programme designed for pupils ‘at risk of leaving school early’ and, eventually, graduated without incident... save the many small incidents in the first term, leading up to a major incident shortly before Christmas, which in turn led to a supposedly permanent expulsion, followed by a four-month campaign to have the expulsion overturned (successfully). But that story, too, is for another day.
During Fionn's six years in secondary school, I was going through big changes as well. In my mid to late 40s, I switched over, after twelve years of class teaching, to resource teaching, working one-on-one with children throughout the school who needed extra support.
The philosophy of the Waldorf schools says that if a child is slower than her peers in mastering areas of study such as literacy or numeracy, it would be wrongheaded to intensify the kind of academic instruction that has been tried in the classroom. Rather, to create a person-centred learning environment, where activities like artistic exercises and coordinated movement exercises can occur, might ideally lead to a sort of coordinated thinking that will actually simplify the future learning process. After five years of studying and teaching in the field of learning support, during which I had completed a master's thesis, I stopped teaching and began to research a doctoral dissertation.
Many brains have trod a false shortcut, and when they hear the phrase 'special needs', they apply the concept to a person, instead of a set of requirements. The term 'special needs' is sometimes applicable to Fionn's circumstances when approaching the challenges of daily life, but more often is not applicable. An example is when he is playing the violin. He has the same 'standard needs' as any other music student learning to play. Additionally, though, Fionn is left-handed, so he either had to learn to play using his non-dominant hand on the bow, or he had to get a specially adapted instrument. Once that special need was met, it was no longer an ongoing worry.
Which is not to suggest that Fionn lacks ongoing special needs. He has plenty of them. Don't we all? And it is worth saying that parents of children labelled with intellectual disability are required to do extra work parenting. In many ways, we could just about call it 'special parenting'.
Throughout Fionn's early childhood, his mother was the primary parent. This was due to my limited availability, initially living on another continent and later working a full-time job, but also based on a shared belief Veronica and I have that young children are best served by someone who embodies the types of parenting skills that mothers acquire more readily, in most cases. But we further agreed that in later childhood the opposite is true. So, one of the reasons I decided to quit my teaching job and take up the doctoral research, while Veronica returned to full-time work running a Steiner Pickler forest-based early childhood programme, was so that I could meet many of the additional parenting requirements that arose during Fionn's teen years.
The theme of my research was the life I was living, and the working title for my thesis was How Family Members Can Support Young Adults with Intellectual Disability to Achieve Their Dreams. Through my research, I learned that the system that is in place across Ireland to support adults with down syndrome does not come close to meeting the goals of the United Nations Convention on the Rights of People with Disabilities, which declares that all people should have choice and control in their lives.
Things suddenly shifted when Fionn was expelled from school. We had no idea whether we could overturn the decision. We could, but, instead of researching my writing project, I was now researching to build a strong case that the decision was unjust. By the time we had met with the School Board and then the Appeals Body, and finally received a judgement that the school had been wrong, and Fionn was returned to classes, Five months had passed.
During those months, Veronica and I split responsibilities as Fionn’s homeschool tutors. I believe we complimented each other’s approaches very well. Whereas she and Fionn spent their time together covering the same material he would have had back in the classroom, picking up the same textbooks on the pages where the last lesson left off, he and I did something far closer to unschooling.
I started by asking the question of who he wanted to become, a difficult question for a teenager to address directly. (More on this below.) But we both knew from past inclination that traditional Irish music performance, nature and wildlife studies, filmmaking and visual arts, and travel would be important pieces of the puzzle.
We took the work into the field. Fionn began honing his performance skills by busking with his fiddle in Galway and Dublin. Ireland has a deep and long-held respect for folk music, whether performed in the pub or on the street, and Fionn earned surprising well. I learned enough on the guitar that I could accompany him (though I still haven’t caught up to his skill level, and we don’t earn any more as a team then he does playing solo). Sometimes the earnings would go to local charities, but much of it was saved for future travel. Most crucially, his self-esteem, confidence, and sociability has improved immensely through this project.
We engaged in a number of nature study projects, with local citizen science groups and on our own, spending hundreds of hours in wild places. And Fionn became quite a scholar in his own right, amassing a serious collection of nature books. The hours he would spend exploring them was primarily image focus in the early days, reading only the picture captions, but evolved eventually to spending more and more energy on the text.
I suggested that we could put together a presentation for the primary students in the school across the street from our house. I knew that, with his wide-ranging knowledge on such an enticing subject, the children would be enwrapped, if he could pull off the delivery. The school was willing to host us. We prepared a slideshow, and Fionn practiced what he would say (with me acting as back-up, when required). The presentation was a big hit, with children and teachers, and we followed up with presentations at two other local schools.
I learned that the Heritage Council hosts a national schools programme, for which they select a panel of experts. We applied and were called for an interview. We decided that I would seek expert status as well, presenting as a team, rather than Fionn as solo presenter with an assistant. This felt more genuine as, with 25 years experience in the classroom, I can add a lot, though Fionn is always the featured presenter. At the age of 17, Fionn became Ireland’s youngest Heritage in Schools Expert.
I was beginning to realise that Fionn and I worked very well together as partners, an evolving relationship that, I believe, is rare between fathers and young adult sons. Teenage Fionn missed the memo that you’re supposed to hate your dad. Back then, and today, Fionn is the best person I’ve met in my life at saying ‘I love you’, words I hear from him multiple times each day. The germ of what was to become Fionnathan was forming – supplanting the dream of completing my dissertation. But no worry – this was real life.
At that point, we didn’t know whether Fionn would be returning to school, or whether he’d finish his education independently. But what does finishing one’s education look like? Both Fionn’s parents, five aunts and uncles, as well as both paternal grandparents, were teachers. So, as well as an extra chromosome, he comes into the game with a significant amount of educational privilege. For someone like Fionn, though, the methods and pace of traditional third level instruction probably wouldn’t suit, and I somehow felt that an acquired degree wouldn’t have the same passport-to-a-good-career effect when your face says Down syndrome.
But rather than closing the door to college, I realised that he had an atypical abundance of options. No one considered third level education a requirement for his future success, whereas many people thought it a prerequisite in the lives of his many cousins. College could be an option, but he would need support that even the most progressive mainstream institution wouldn’t be prepared to offer. I could probably fill the gaps myself. Having an intellectual disability label actually rewrites the definition of success. There would be gatekeepers to convince (or work around), but I had great enthusiasm for doing this sort of advocacy for and with Fionn.
If we were to do this together, my struggle would be in learning to walk more often beside and behind him, rather than leading the way. Fortunately, friends, colleagues and family had already helped me to see that this was something I could benefit from in other areas of life, so I readily saw the value in learning to chill out. I was up for the challenge of developing my dad as a dynamic supporter persona.
But what direction would Fionn take? Asking the question, in many ways over much time, I had heard Fionn say that he would like to devote his energies to Wildlife Researching, Zoo Keeping, Travel Exploring, Film Making, Film Watching, Rubbish Collecting, Fiddle Playing, Singing, Climate Change Fighting, Fire Fighting, Visual Arts, Sorting and Cataloguing Media, Adventure Sports, Teaching, Farming, and Eating Good Food. Maybe there was room in his life to explore them all, but it would be good to eventually prioritise and set goals.
And now I realised that, by approaching the question of Fionn’s future direction with the rigour and passion of an appropriately paced research project, we would have a greater likelihood of great outcomes, and feel good about the journey. In fact, wouldn’t that be an ideal process for any young adult to undergo?
This led to our third big homeschool project, a film making endeavour. We’d been making little films, mostly for ourselves, but posting them online, too. Subjects included nature walks, Fionn playing his fiddle for farm animals in a field, a short werewolf spoof for Halloween, and similar. As an advocacy exercise for our local Down syndrome organisation, we had travelled the county, interviewing a varied cross section of people with Down syndrome. In preparation, I asked Fionn to come up with a single interview question, to keep things simple for him and the interviewees (thinking we could film a lot of situational stuff to create context). “What do you love about your life?” he said. Brilliant.
The project came off well. The organisation’s PR firm arranged for us to be on The Saturday Night Show to talk about it, some months after Fionn had returned to school. This is one of RTE’s flagship programmes, more Irish viewers than anything else for that time slot. Other guests on the show have included John Hurt, Michael Barrymore, Ray D’Arcy, Noel Gallagher, and Pussy Riot. The host (who, coincidentally, has a daughter with Down syndrome) helped to assure that Fionn’s wit and charm came through, and his fiddle tune was pitch perfect.
It seemed that everyone in the school community had seen the show, and, that Monday morning, Fionn received a long ovation, with the students cheering his name when he arrived at school. Quite a trajectory after the embarrassment of expulsion – from zero to hero.
Once the dust had settled, I realised that this question could be a straightforward approach to interacting with people who are successful in the multiple fields that Fionn is considering for his life path. If you want to know what living the life of an actor is like, for instance, go to a film fest and talk your way into a press spot along the red carpet. Same with film directors, artists, musicians, politicians, sports celebrities, and nature experts. With my gift of persuasion and Fionn’s unique charm, we were an undeniable prospect.
We are now in the seventh year of interviews, having posted on our YouTube channel over 600 videos, viewed more than 400,000 times. We’re still looking for answers, but we are reminded again and again, in many ways, that the process is the goal.
Transitioning to What?
When Fionn was approaching the end of secondary school, government agents informed us that, with Down syndrome, he would soon qualify for Day Services. (They don’t usually refer to Down syndrome as a qualification, but he did pass a test.)
Day Services typically run from September through June, Monday through Friday, for about six hours a day - like being in school for the rest of your life: only with few, if any, elective courses, and no degree or meaningful qualifications at the end. It’s some people’s idea of heaven, but probably not many people’s.
Another area that special parents become expert in, besides the additional unique needs of their own child, is an entire infrastructure of government funding to help your child achieve a good life. You can’t help but be grateful that society puts enough priority on the welfare of its citizens that such a system of support has been created. And you can’t help but be deeply frustrated by the inadequacies, capriciousness, and sometimes medieval convolutions of that system. I’ve heard similar complaints from parents in multiple countries, so it’s not just an Irish thing.
Nonetheless, as time goes on, and your child grows, you learn lots of the ins and outs of the system. How and where to apply for certain benefits, where to look for support with therapies, respite, etc. All through the school years, most of these supports are organized by and disbursed through the Department of Education.
Quite suddenly, though, all that changes, when your child finishes secondary school. In some countries, children with recognised disabilities have the right to attend formal education for a defined number of years above the age of 18, but this is not the case in Ireland. Like many other areas of education, the government has left responsibility for policy to the (nearly-always-religious) patron bodies of the schools. It could be three years past 18, it could be one day past 18. In Fionn’s case, he graduated about three months after he turned 18 (or a day shorter than that, if he really was born after midnight).
We looked into the options in the area (each of which would likely require the same three-hour daily commute to travel 40 km that had gone so badly when he attended St. Anne’s). In one, all the other participants were between 40 and 60 years old. Another, which looked promising, was called Street Wise, because they went out each day to learn to navigate the urban landscape. But the hub in which they started and ended the day was in an industrial park, with warehouses and articulated lorries. It’s not that real estate was unavailable on the high street in that town, it’s just that they didn’t consider it worth spending the money on.
When the Health Service Executive’s (HSE) Regional Disability Officer came to our home, to ask which Day Service Fionn would be attending in the autumn, we told him that none of them would suit him. He said, “That’s your choice. Good luck,” and began to pack his documents back into his briefcase.
“Wait,” I said. “We want you to give us the money to support Fionn to have his own programme.”
“That’s not how it works,” he said, with a slightly awkward chuckle.
“We know that it hasn’t started officially here, but we also know that your internal reports have said that it must happen, and that you are behind schedule to roll this out. So we’re here to help you.”
“I’ll have to bring this request back to my boss.”
It took multiple meetings with him, and his boss, to convince them to agree to our plan. Finally, they invited us to meet with the CEO of the Brothers of Charity, the largest service provider in County Clare (and a front for the Catholic Church). To be fair, the County Clare branch of the Brothers of Charity are considered quite progressive, and it was through some of the training projects they offered for families that we first came across Social Role Valorisation and other key concepts in the emancipation of people with disability.
Fionn’s interview with the CEO went like this:
Fionn: Is there an option to study Zoology here?
Fionn: What about Film making?
CEO: We might bring some student filmmakers to make a film, and you might
be featured. You wouldn’t really learn to make films, though.
Fionn: Will I learn to play my violin better if I attend?
Fionn: Then why would I go here?
CEO: You make a good point, Fionn. But you have to understand, we designed
the curriculum of this programme before we met you.
The CEO then offered to use the money the HSE would grant his organisation to hire a person to work with Fionn wherever he wanted. Fionn could design his own schedule of activities, which could include evening or weekend hours, and he would be on the hiring panel.
That’s when I asked some questions:
Me: What if Fionn changes his mind about activities and hours? What if Fionn
wants more fewer hours some weeks, banking them so he can have more
other weeks? What if Fionn wants to attend a weekend course or a special event somewhere else in the country?
CEO: All of that could be possible. I’d have no problem with any of it. As long as the employee we hire agrees to the changes, they can be made.
Me: Oh, so the employee gets to decide, not Fionn?
CEO: I think what you need is your own budget.
He turned to Fionn and said one further thing. “Actually, I believe that what you are asking for will be the future of service provision. What we currently offer will be seen, then, as a dinosaur.”
It took some months more to work out the details, but, within the year, Fionn became the first individual in Ireland with a cognitive impairment to directly receive a government grant for his social support. This is often referred to as ‘self-directed’ support but, in our case, the term ‘family-directed supports’ would be more accurate.
During the negotiations, we informed the HSE that Fionn would be employing me as his initial support person. As this was unmapped territory, we knew that no policies yet existed defining who can and cannot be employed by him. Some regions of the world restrict individuals with disability from using personal budgets to hire immediate family members. The argument we’ve heard most often in favour of these restrictions is that such relationships are ripe for financial abuse, as family members have, inherently, more power than their disabled siblings / children, a dynamic that is less prevalent in the relationship between people with disability and non-family members.
Our argument against such restrictions, which Fionn later put forward during his work as an invited member of the Irish Government’s Task Force on Personal Budgets, is that:
- As the risk of financial abuse is not greater in all family employment cases (and there is no evidence to show it is greater in most cases), such policies show prejudice against family relationships;
- Family members can have the highest real-life qualifications, expertise in delivering support to the individual, job loyalty, availability, flexibility regarding job description, work hours, locations, etc. of any potential employees, and therefore should not be dismissed as candidates out of hand;
- Such policies can be used to obfuscate the State’s true responsibility to protect from financially predatory behaviour when services are provided by non-familial agents. We believe that the for-profit sector needs to be watched closely, as their primary motive for providing support is profit, whereas family members’ primary motive is often love.
We designed a full-time, personalised plan, and asked the HSE for enough funding to cover it. Alas, they were only willing to hand over the amount they would have otherwise transferred to a traditional service provider, less than half the amount we had requested. Better to have a foot in the door than to be locked outside, we agreed, knowing we could renegotiate in future.
You could say that I recognised the entrepreneurial potential of this project (though perhaps more realisable in social capital than in hard cash) and agreed to work 40 or more hours, every week – whatever it takes – considering the non-paid hours to be investment.
Ironically, because the grant is smaller than we sought, the number of hours that Fionn can employ me is few enough that I qualify for a Social Welfare payment called the Carers Allowance. The combination of my wages and this payment add up to roughly the amount that we initially requested, so it all works out fine.
As expected, the HSE officers did suggest that they would prefer Fionn hire someone he’s not related to, but they accepted that, with no guidebook, website help desk, dedicated support line initially, or any other way to request logistical support with the nuts and bolts of running your own service (at the age of 18), he would need to hire someone with a diverse portfolio. Plus, I was less likely to quit when Fionn undoubtedly would make mistakes and change his mind about how his supports are to be delivered. In time, it is our expectation that Fionn will hire one or more other people to take over days, until eventually I had succeeded in making myself redundant.
They had one additional requirement for us. As they were not comfortable with the idea of releasing money directly into Fionn’s personal bank account, they asked us to establish and register a company. My first reaction was slight annoyance at the further hoop jumping, but I soon realised that this was one of those hoops that we wanted to jump for our own reasons.
This hard-won government grant for family-directed supports became seed capital for our social enterprise. We decided on the name Fionnathan Productions. We think celebrity portmanteaus are a bit silly (we like a bit silly), and applying them to ourselves is a way of lightheartedly signalling our desire for recognition and status.
Putting Fionn’s name first is not only because Jonaionn would be awful, but also to remind us that Fionn’s perspective comes first. Fionn is a little-known name outside of Ireland (16th most common baby name in Ireland, 2019). It means ‘the fair-haired one’ and refers to Fionn McCool, who is one of the most famous mythological early historical figures of Ireland. When you say Fionnathan out loud, it sounds a bit like Fear nuthin’. We’re the only Fionnathan on the world wide web. Through strange serendipity, a parallel with the Irish language that only became known to us years after we’d incorporated, the Gaelic word ‘fionnachtain’ means discovery. Perfect.
We registered as a Company Limited by Guarantee, Without Share Capital. We established a Board of Directors, populated with neighbours and family, creative people who knew Fionn well. In our Articles and Memorandum, we declared the three goals of our company.
In simple terms, they are:
- To help Fionn have a great life
- To share the journey, in hopes of helping others have great lives
- To change the world, by removing obstacles that prevent people from having great lives
Our accountant (now we had an accountant!) suggested that we consider registering the company as a charity. We rejected the idea, as we didn’t want to associate what we are doing with a fusty image of Haves selling their crusts of bread to Have Nots in exchange for their gratitude. You can keep your tax-exempt status; we’ll keep our dignity. The label of Social Entrepreneurs is a much better fit.
The next thing to set right was employment status. I was being paid to help Fionn and (obliquely) others, and to inspire better policy creation. Fionn was doing the same work, really. Shouldn’t he also be paid? It may seem a radical notion that people around whom self-directed support is established should be on the payroll, but, once you’ve thought about it, it’s impossible any longer to expect self-directors to volunteer. Employing Fionn with a person-centred job description would be our next major innovation.
We had done a handful of school visits, teaching about Irish wildlife and playing traditional music, over the previous two years. It didn’t amount to much income – Fionn certainly made more money busking on the streets of Dublin, Galway, and Limerick. A couple of film commissions as well. Also we had curated an art exhibition in the local library called Collaborations, featuring ten pieces on which Fionn had partnered with ten established artists. I knew that we could string together these talents, and others that we would discover along the way, and likely have enough to pay Fionn a part-time salary. And maybe enough extra to start a travel fund. But I wondered if there are government grants to help people start businesses, particularly people who are in groups characterised by high unemployment levels.
So I walked into one of the branch offices of Employability, and asked the man behind the desk, “Do you help people with disability to start their own businesses?”.
“Not really. We use the Wage Subsidy Scheme as a carrot to convince employers to hire people with disability. When the job is 20 hours per week or more, and the pay is minimum wage or more, we reimburse the company for about 2/3 of the wages.”
I think he may have been a bit frustrated with his work that day, because he told me more than I would have expected him to share with a stranger. “Tesco or Bank of Ireland will employ a hundred people at once, across the country, and make a big deal in the press, polishing their hallow, claiming that they intend to find permanent jobs for about 50% of the new hires. Invariably, eleven months down the road, after skimming two or three people off the top for permanent employment, they lay the rest off, when the public has forgotten. Looking at this from my usual perspective, people are gaining job skills and eleven months of pay, even if they’re let go before the year’s out. But looking at it from another perspective, I can’t help but feel that the decision to participate in this programme is made because it’s a source of cheap labor, good PR, and little else.”
“Well, I don’t really think Fionn wants a job stocking shelves,” I said. “Thanks for letting me know.”
I walked out, but came back a few hours later:
“Which companies can avail of this scheme?”
“Any private company that is tax compliant.”
“Even if the company directors would use the funding to hire a family member?”
“In private companies, that happens all the time.”
“And what kind of job description would this person have to fulfill?”
“That’s entirely at your discretion. As long as the employee is working toward meeting the goals of the company, it’s up to the employer what that looks like.”
A few months later (more hoops to jump) Fionn and I were both employed through our social enterprise.
What Fionnathan Does
We followed Fionn’s core passions to build for and with him an amazing starter career. He is a regular fixture of the Galway traditional music scene, and a successful busker, both in terms of financial profit and expanding public conceptions of the capabilities of those with Down syndrome. He has played music for communities around the world, from deep in the rainforests of the Amazon to the sun-baked Stonetown square on Zanzibar. As a visual arts team, Fionnathan has had multiple exhibitions around Ireland. As part of an international collective of artists with Down syndrome, Fionn’s work has been shown in London, Manchester and New York.
Through media, the arts and education, Fionnathan spreads a message of radical inclusion. Working with numerous organizations in multiple countries, we have led advocacy courses and family consultations; published works; served on government committees; and presented at conferences worldwide.
Learning first-hand about the power of choice and control, we thought that sharing this with Social Care students might shift their thinking about work with the people with disabilities. Over our first seven years, we have given an impressive array of guest lectures in colleges and universities around Ireland and in eight other countries.
We believe that applying the tools of academic research to life’s questions is a way of both finding our path and providing useful examples to others. Consequently, Citizen Research is a core activity of Fionnathan. Through our ‘What Do You Love About Your Life?’ Project, we have conducted interviews in twelve countries, including celebrities in many fields. Fionn is using these interactions to create a more informed plan for what he wants to do with his life. A picture is coming into focus.
We conduct research on natural heritage, both in Ireland and internationally. Fionn and I continue to serve on the Heritage in Schools Expert Panel, having now visited thousands of school children. Our projects include field research into Black Swans, Bottlenose Dolphins, African Megafauna, Green Sea Turtles, Giant Otters, Pink River Dolphins, Grey Headed Flying Foxes, Manta Rays, and Bioluminescent Bacteria and Algae.
We are members of the Inclusive Research Network of Ireland, a group of neuro diverse people that conduct research with the help of academic professionals in Trinity College and the University of Limerick. Projects that we have worked on include A Response to Irish Government Regarding UNCRPD Reservations; Our Homes; and Doctors and Us. Through five years involvement we have helped design inclusive research methods and ways of presenting research that have been adopted by the IRN. We have had learning exchange with inclusive research groups based at University of Bristol, the University of Sydney, and Temple University, as well as having consulted with other nascent groups, and find ourselves in a unique position to address the strengths and challenges of Inclusive Research.
And we are members of the Citizen Network, an organisation founded in 2016 to celebrate the value of inclusion and equal citizenship. It brings together thinkers and actors, people who share stories of challenge and success. In fact, we have accepted the Network’s invitation to be their first International Ambassadors.
To be most effective as an advocate for change, I recognised early that helping to shape policy would be important. While serving on multiple government working groups, we’ve learned the mantra of ‘Nothing about us without us’. With the Self Directed Supports Research Group, based in the National University of Ireland in Galway’s Centre for Disability, Law and Policy, we developed a road show and co-authored a collection of family stories, mostly about parents who had found creative ways to meet the needs of their children. We found that parents are often experts on their children with disability, not automatically because they are parents, but through years of hard work, and as people who love their children, and later, adults, actively. Love = interest.
Through the community development work of our social enterprise, we have found lots of collaborators. Slingshot Academy brings secondary students to a university for a day, where they hear presentations from college students studying STEM – or from young entrepreneurs. They invited Fionn to deliver the keynote address. The Disability Federation of Ireland commissioned us to design and teach a six-week course, which we called Creative Approaches to Practical Advocacy. Our neighbourhood Community Resource Centre invited us to co-facilitate workshops and group art making, bringing together elders with intellectual disability with secondary school students from the country’s most ethnically diverse community. Then we worked with their whole families, hosting a series of Cultural Cafes, where groups would share origin stories from the place they lives before immigrating to Ireland, through the sharing of customs, music, costume, dance, and, of course, food.
I am writing this during the COVID-19 Pandemic, and it feels at the moment that we will look back at this experience as the time when life changed. I’m optimistic that many of the problems that vexed us for so long, as a human society, may be shifting. But I’ve been around long enough to know that, when one set of challenges dissolved, another are busy crystallising.
At present, all our travel plans have been erased, including five scheduled international trips. Like many people we are learning to deliver courses online. But I know something essential is lost in adjusting from face-to-face to web meetings. We have had a significant number of college students inform us that ours was the best lecture and presentation (we always play a bit of music) in their whole programme. It would be good to feel that we can still have significant impact through the screen. I just don’t know.
As well as continuing to build upon the things we have started, we have lots of new ideas. We want to do more collaborative art projects. After warm responses to our first few two-man stand-up routines including a week’s run at last year’s Edinburgh Fringe Festival, we want to do more comedy. And Fionn’s working on a children's book, about the legends of Fionn McCool.
Personal budgets for self-directed services is an idea whose time has come, and is sweeping around the world like a slow tsunami. But influential voices in government believe that money is saved by quarantining people in care programme. This argument says that group supports cost less than individual support, even with the sizable portion of the group budget spent on buildings and administration. Left out of the equation is quality of life, the right to choice and control, and the wasted potential contribution to society of individuals empowered to contribute.
Still, I do have concerns that, as the primacy of government- and charity-led group supports wanes, large for-profit actors will fill the breach. The populist notion of consumer choice through markets is backed by the dark promise of government shunting responsibility for the welfare of its citizens. We have to move forward with open eyes, and assure that this evolution doesn’t leave the most vulnerable with even less agency than they currently have. But that, too, is another story.
This work alongside Fionn has taught me to think in terms of abundance, expecting that, while cultivating an open mind and a warm heart, things have a wonderful way of working out.
I hope you’ve enjoyed this description of how one family has approached the challenge of helping their son to achieve a great life.
I’ll leave the final words to Fionn, with a few statements he has shared with multiple audiences, in multiple countries:
"Exchanging day service for self-directed supports is just like Jack trading a cow for magic beans. I teach people how to plant and climb their own beanstalk."
“Without love, everyone is disabled. With love, disability disappears.”
“I don't consider myself a self-advocate. That would be a sadvocate. I'm not that selfish. (But my dad is a dadvocate, alright.) I work for the empowerment of people with disability, and for social justice. I'm an Abelist Abolitionist.”
“When you consider that 499 out of 500 babies suffer from a lack of Down syndrome, my parents are incredibly lucky.”
Find out more about Fionnathan Productions at:
The publisher is the Centre for Welfare Reform.
A Self and Family Directed Adventure © Jonathan Angus 2020.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.