The Four Walls of My Freedom

by Donna Thomson

  26. “You’ll Never Walk Alone” lyrics by Oscar Hammerstein II, from Carousel, music by Richard Rogers.

  27. Rosalyn Benjamin Darling, “Parental Entrepreneurship: A Consumerist Response to Professional Dominance,” Journal of Social Issues, 44.1 (1988): 150.

  28. Ibid.

  29. Kittay, Love’s Labor, p. 154.

  30. Andrew Jacobs, “Pennsylvania Couple Accused of Abandoning Disabled Son,” New York Times, December 29, 1999. See www.nytimes.com.

  31. André Morin, “Between a Rock and a Hard Place—Final Report,” Ombudsman Ontario, May 2005.

  See www.ombudsman.on.ca.

  32. Shelley Page, “Whose Child Is This?” Ottawa Citizen, February 7, 2009, p. B1. Used with permission.

  33. Ibid.

  34. Eva Feder Kittay, “When Caring Is Just and Justice Is Caring: Justice and Mental Retardation,” Public Culture, 13.3 (2001): 565.

  35. Kittay, Love’s Labor, p. 132.

  36. “Putting People First,” UK Government, Department of Health, February 26, 2009. See www.cpa.org.uk.

  37. “Putting People First — Without Putting Carers Second,” Princess Royal Trust for Carers and Crossroads Caring for Carers, February 27, 2009. See http://static.carers.org.

  38. Arlene Kaplan Daniels, “Invisible Work,” Social Problems, 34:5 (December 1987): 403.

  39. Ibid., p. 409. Kaplan Daniels elaborates: “The aspect of these activities most difficult for everyone to conceptualize as work involves the warm and caring aspects of the construction and maintenance of interpersonal relations. In the commonsense view, these activities occur spontaneously. They are informal and unregulated — outside of bureaucratic rules and obligations. These activities are what Arlie Hochschild (1979) calls the positive aspects of “emotion work.” They involve the following behaviours: (1) attending carefully to how a setting affects others in it — through taking the role of the other and feeling some of the same feelings; (2) focusing attention through ruminating about the past and planning for the future; (3) assessing the reasonableness of preliminary judgments by checking over the behaviour of all respondents in an interaction — just as good hostesses do when they look for signs of how well people are enjoying a party, whether or not anyone feels ill at ease or left out; (4) creating a comfortable ambience through expressions of gaiety, warmth, sympathy, and cheerful, affectionate concern for or interest in another.”

  40. Kittay, Love’s Labor, pp. 179–80.

  41. See Appendix A for a detailed breakdown of our index results.

  42. Canadian Institute of Wellbeing/Measuring What Matters, May 9, 2010. See www.ciw.ca.

  43. Institute of Canadian Citizenship (ICC), May 9, 2010. See www.icc-icc.ca.

  44. Cristina Odone, “What Women Want and How They Can Get It,” Centre for Policy Studies. Centre for Policy Studies, January 12, 2010. See www.cps.org.uk/ cps_catalog/what%20women%20want.pdf.

  45. Amartya Sen, The Idea of Justice (London: Penguin, 2009), p. 260.

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  Where Are

  We Now?

  Moving Home:

  A New Life for Our Family

  From the moment our plane touched down in Ottawa on August 28, 2011, everything about our family life changed. After five years in London, we were back in Canada for good. We drove Nicholas in a wheelchair van straight from the airport to the Ottawa Rotary Home — a cozy residence where our boy would now live and receive nursing care 24/7.

  Over the next two years, Jim would retire after thirty-six years of long hours and high stress in the diplomatic service to find a more balanced life of consulting work and leisure. Natalie would leave the University of Toronto, bound for graduate school at the University of Delaware. I would forge a new professional path of writing and teaching. And Nicholas would explore living independently. He would visit often, but he would never sleep in our family home again.

  Planning for our move back to Canada began months in advance. Long conversations with airline officials, intricate scenario planning and complicated packing lists were slowly completed. I began to make initial enquiries about where Nick could live and receive the care he required in Ottawa. At first, no one had answers or even encouragement. My first cold call to a local social service agency did not go well. When I explained that we were a returning diplomatic family that could not support Nick without twenty-four-hour nursing care, I was told that we would have no help whatsoever upon our return home. Apparently, our only option was to languish on waiting lists. The care funding we had won in our four-year appeal process was no longer valid because it had been mandated by the Ministry of Children and Youth Services and Nicholas was now an adult. We needed to invent a care solution from scratch, and we needed to do it quickly. We had just over four months to create a long-term support plan for Nick, ideally one that would last his lifetime. In the end, we managed to do it because a number of factors aligned to put our family in the right place at the right time.

  Champions across sectors who knew Nicholas’ needs demonstrated vision, flexibility and leadership, and for that we will always be grateful. In a way, we were lucky that our family had already endured a lengthy and painful appeals procedure. We also benefitted from the fact that the UK government assessed Nicholas’ needs as being primarily health related (as opposed to social). Individuals with a primary diagnosis of developmental or cognitive disability are locked into sole funding by the social services ministry in both Ontario and the UK, but Nick’s complex health concerns had always made him a hot potato — he was tossed between health and social care, leaving him and the rest of our family without help while the bureaucrats wrangled. It was clear to us that in both Canada and the UK, the health ministries were more reliable funding sources for Nick’s complex nursing needs. Furthermore, although it was clear to everyone that a primary diagnosis of developmental disability had never been part of Nick’s profile, he fell into a large crack between the funding criteria of these two ministries. Nicholas’ health care needs had actually increased over the five years we lived in London, and he now had several new diagnoses to add to his already lengthy medical cv.

  Our plan was to approach Ontario health authorities first. Nicholas was known almost on a first-name basis by medical and social support staff working in Ottawa children’s services. But the adult and children’s bureaucracies are ent
irely separate. Local service providers on the adult side had never heard of Nicholas Wright. Families here say that when their child with disabilities turns eighteen, it’s like they have fallen off a cliff. To make matters worse, a returning diplomatic family with a son like Nick was a complete anomaly to the system. At first, it was difficult for us to explain to front-line Ottawa social service workers that during our years of government service abroad, we had never stopped being tax-paying residents of Ontario. The reaction we received to our initial enquiries about what services might be available to support Nicholas upon our return ranged from chilly to mystified. They assumed we were newcomers to the province and, therefore, our place was at the bottom of waiting lists. I wondered if they believed we were even Canadian.

  At the time of our move, Nicholas was a twenty-three-year-old man under adult services — someone everyone agreed required twenty-four-hour nursing care. We knew that Nick’s needs could not be met in our family home with a patchwork of helpers — the maximum allowable levels of home nursing would barely make a dent in his daily regime. Jim and I simply did not have the youth or physical strength to take up the slack necessary to keep our son safe.

  It was clear that we had to find a housing and care solution for Nick before we returned to Canada. Nick could not move into our family home, even temporarily — if he did, we would all end up in the same vortex of pain, desperate fatigue and frantic hopelessness that we experienced in 2004. Luckily, the provincial government recognized Nick as a candidate for health services and social services. A couple of other highly complex adults living in Ontario had secured funding from both the Ministry of Health and Long-Term Care and the Ministry of Community and Social Services, so these precedents made our path a little easier. When our only local long-term care hospital turned Nick down due to his need for awake bedside night nursing, the door opened for a creative community solution. With a funding agreement in place, the search began for a local partner, one that could provide a home with qualified staff to care for Nick. Gina St. Amour, CEO of the Ottawa Rotary Home and champion of families supporting a son or daughter with disabilities, was my first port of call. The Rotary Home had just opened the doors of a new respite facility with a wing for children and another for adults with disabilities. The children’s wing had received provincial funding for its operations but the adult side sat vacant, with only enough charitable funds to run an occasional overnight respite program. When I explained to Gina that we had secured health and social services funding for Nick’s care, but had yet to locate a housing partner, her eyes lit up. “We would love to offer Nick a new home,” she said, smiling.