The Four Walls of My Freedom

by Donna Thomson

  Fiscal policies such as the RDSP that allow people to save without penalty, spend as they wish and participate in community life with the assistance of state-funded services constitute the elements that allow people with disabilities to convert financial assets to good living.

  So, in Canada at least, families like mine finally have a financial tool to plan a decent future for their loved ones with a disability. Friends and extended family can help too. That’s the good news. The bad news is that governments are scratching their heads wondering how to fund exploding social- and health-care budgets.

  In Great Britain, politicians and academics alike are busy inventing new ways of injecting private funds into pension funds to pay for the looming long-term-care crisis. Young Britons are not saving given the current recession, which comes on the heels of a borrowing and spending frenzy over the previous decade.

  In September 2009, I was invited to participate in a roundtable of economists and accountants hosted by the Lord Mayor of London, Ian Luder. Professor Ian Mayhew of the Cass Business School reviewed the gloomy UK demographics and proposed a radical solution to funding seniors’ care. He noted that although life expectancy is increasing (especially among females), we are not necessarily living healthier. Most people endure about ten years of infirmity at the end of their lives. Governments in all developed nations are considering raising the age of pension eligibility, if they haven’t already done so. Australia has introduced a compulsory pension scheme and other countries are watching closely how that initiative plays out.

  In Canada, health, social care and education are matters under provincial jurisdiction. My family experience has been in the Province of Ontario, but federal guidelines are such that in principle at least, there shouldn’t be too much difference in standards of decent support across the country. In light of a proposed reinvented public/private partnership between government and families, what exactly should be the bottom-line expectation of provincial governments? I believe “adequacy” is the correct response here. Governments should ascertain what is required to support individuals’ lower functioning. This should include mobility equipment, nursing services as currently identified for medically complex care, such as patients on ventilators, and of course residential care facilities for acute and long-term-care patients. The state has a duty to partner with families to provide and pay for these matters of basic living. But an important caveat here is that, if families are willing to pay for an “upgrade,” they should be able to do so. Standards of care are nonnegotiable, but if someone has the means to provide French cuisine with a glass of champagne for dinner every night, they ought to be able to do so. Just because someone has a disability should not preclude them from enjoying the benefits of a market economy.

  Higher-functioning activities, such as personal relationships, social outings, pursuing interests and offering civic contributions, should be enabled by friends and family on a private basis. But these activities do not come free, and often in cases like my own family, require armies of people to carry out. Similarly with the aged, we must find ways of including the less able into our community life in a way that will not bankrupt families and drive their primary caregivers to an early grave. Governments have a role in enabling active citizenship and rewarding altruism — secondary schools in Ontario are doing this by requiring community service from their students. Some corporations reward their employees who volunteer. The Institute for Canadian Citizenship embraces the value that “we believe that citizenship requires that one take responsibility for others.”43 Co-founders of that institute, Adrienne Clarkson and John Ralston Saul, told me that members of local citizenship committees befriend new Canadians and provide examples of civic contributions that are part and parcel of being a good Canadian. But contributions reap rewards and new citizens are given a Cultural Access Pass for one year’s family admission to publicly funded cultural institutions. Currently, the scheme operates only in Toronto, but is set to expand to other regions across the country. This ethic of community giving and receiving is an example of a program that forges a connectedness between people that, if extended, will benefit vulnerable and isolated citizens as well.

  Ethics and moral philosophy guides us in shaping the financial deal between families and the state. If we agree that it is morally wrong to coerce someone into giving care, as in my own experience or that of the Kelso or McKeague families, then we must accept that families have a state-supported exit clause. When families put up their hand to their health or social service department and say “I need help” or “I have had enough — I can’t do this anymore,” those civil servants should respond with practical solutions and no defensive, bureaucratic nonsense. Enabling families to contribute their own resources without fear of losing state resources would go some distance to achieving this ideal. Tax initiatives, such as income splitting for families where one parent cares full-time for someone in need, would be helpful.

  If I had been able to claim half of Jim’s income over the past twenty years, our tax rate would have been much lower. We would have had the extra cash to pay for more care and special equipment. As it was, on paper I could have been sitting home eating bonbons, because Canada Revenue did not link Nicholas’ disability tax credit to my status as a non-“working” mother at home. My contributing role was not reflected in our taxation, so my contributions were not reciprocated in any way, shape or form by the state. Where citizens give care to others, policies must reflect an understanding that those two people — the carer and her charge — are linked in almost every way. The wellbeing of each is completely dependent on the other. Policies that support caregivers are essential to the health of their vulnerable charges, just as policies that support mothers result in healthy children.

  Local community centres can play a vital role in supporting carers. At home in Ottawa between postings, I was an active member of my local community centre, Dovercourt. For a time, I was a board trustee representing the interests of those served by inclusive programs. Dovercourt is a terrific real-life example of how a sports and recreation centre can galvanize a community to embrace all of its citizens. The City of Ottawa partially funds operations of that centre, but participants also pay fees for programs. The centre’s charitable status pays for free swims for people with disabilities, rehabilitation programming such as the rehab walking club and post-stroke aqua fitness classes. There are classes for all abilities, many for those with long-term conditions as well as for those who are recovering from surgery or illness. Charitable funds also pay for specially trained one-to-one helpers, otherwise volunteers help out. Secondary school students are encouraged to fulfill their voluntary-service hours requirement at Dovercourt. John Rapp, executive director at Dovercourt, once told me that the lounge with its Internet café and playstructure is “the living room of the neighbourhood.” Everyone is welcome and after aerobics or aqua class is time for intergenerational coffee and conversation. The friendly banter is natural — differing abilities blend in seamlessly. Everyone is friendly with the residents of a local psychiatric group home who often come in for some company. When Nicholas and Natalie were small, I would leave them in the wonderful Kindercare facility, knowing they were safe and happy while I did aerobics in the adjoining gym. Family swims were a regular activity for us, but we took advantage of the disabled swim times if we wanted a quieter experience. These sociable and healthy pursuits made me feel connected to my neighbours. When I didn’t come to class, people noticed, and prepared meals would often be dropped off at my door. All of these special kindnesses gave me a sense of connectedness to my community. It helped to make us all feel “normal.” Dovercourt is a designated emergency shelter, so when the ice storm hit in 1998, many in our neighbourhood slept on cots in the gym. Although we had a hotel room, we used the warm facilities during the day to socialize and allow the children to play with their friends. This neighbourhood “living room” is just one example of interdependence realized and celebrated thr
ough public-private co-funding arrangements.

  But it’s not only seniors or people with disabilities and their families who benefit from such arrangements. Cristina Odone of the Centre for Policy Studies in London was interested in the aspirations and life goals of women in England. What she found surprised her and offended some. Odone’s research showed that most women derive their greatest satisfaction by nurturing their loved ones. Their careers are seen as an intrusive and rather unpleasant necessity. In “What Women Want…and How They Can Get It” (March 2009), she wrote: “Our work-centred culture is based on a fundamental conundrum: the economy depends on workers, while society depends on carers. Women, in particular, are torn. Only by resolving it will we create the conditions for a society in which adults fulfil their potential as professionals, partners and parents. …Can — should — government intervene in such an intimate sphere? The answer is a resounding yes.”44 Odone’s policy recommendations reflect her findings that women feel torn apart by a desire to care for their families, to have some paid work for life balance and financial security while experiencing the push by governments for them to be in full-time paid employment with children in daycare or face paying the penalty costs. If policy-makers were to accept my argument for the capability of enabling good mothers as a matter of justice, they might take up some of Odone’s recommendations, such as:

  •The government should change its childcare strategy. Pumping billions of taxpayers’ money into a childcare system that is both unpopular with mothers and has been shown to harm children’s emotional development makes no sense.

  •Instead, through the tax credit system and childcare vouchers, the government should enable families to choose their childcare, including parental or close

  family care.

  •The Pensions Act 2007, which introduces weekly national insurance credits for carers of children and the disabled as of April 2010, is a step in the right direction. The credits will count towards the State Basic and State Second Pensions. But the new proposals will only apply to those people who have twenty qualifying years of National Insurance (UEI) contributions…who reach State Pension age between April 2008 and April 2015. More should be done in this direction.

  •The government should reform the tax and benefit system so that they no longer penalize stay-at-home women. Income splitting could redress this. Income splitting regards the household rather than the individual as the basic economic unit. It allows married and cohabiting couples with children to be taxed jointly rather than as individuals.

  •It should be easier, not more difficult, for businesses to employ part-time workers. At present only a little over half (66 percent) of businesses have part-time workers; the volume and complexity of employment regulations are not likely to attract more businesses to take on more employees of any kind. The government should act quickly to cut these regulations and their accompanying paperwork.

  •Finally, we need to break the stranglehold that a small coterie of women, who work full-time and buy into the macho way of life, enjoy on our public life. They have, for years, misrepresented real women who reject the masculine value system for one that rates caring above a career, and interdependence above independence.

  Odone is talking here about the United Kingdom, but the policy ideas are relevant in any developed nation. She certainly seems unduly harsh to those women who have fought so long and hard for an equal place at the boardroom table, but I agree with her that the celebration of paid employment alongside derision for the work of caring is wrong and actually unhelpful to everyone. We all require care at some time in our lives. Indeed, a new trend to emerge (and this just from my own observations) is that of women beginning a new career path at age fiftysomething. Once childrearing is done, healthy and fit mothers jump into pursuing their dreams of becoming someone other than a mother. Many women find themselves at the top of their career game just as their husbands are on the point of retiring. I agree with Cristina Odone on most of her policy recommendations but I would warn her not to throw the baby out with the bathwater. Women do have more opportunities to succeed in business than ever before and we do not want to squander those advancements. But all of society needs to recognize that caring for dependants is not some dirty little secret to be denied or swept under the carpet. My daughter, Natalie, is at university and she has big plans for success in business AND a happy family — with lots of luxury holidays to boot. She wants it all, and I believe she should have it. Policies that allow women to nurture well with reasonable support followed by a retirement from caring should be available. Of course there will be some men and women who choose all or nothing on both sides of the work/care coin and why not? But where job satisfaction is concerned, Odone has echoed that essential PLAN value — that relationships are the key to a good life.

  When it comes to our aging population in Canada, we have a lot of reasons to be worried. Many people still assume that the government will provide care and if state-funded services fail, charities will pick up the pieces. Tim Draimin, executive director of Toronto’s Social Innovation Generation (SiG) coordinates the efforts to create a sustainable business plan for our country’s charitable sector. SiG has been looking carefully at the UK model of enabling the development of social enterprise, loosely defined as a business with a social purpose. This is important for Canadians, because solutions to meet the housing and lifestyle needs of vulnerable citizens will be found somewhere between charity and for-profit business models. Enabling innovation in this area by creating legal frameworks to allow private venture-capital investment into charitable enterprises is the idea. The danger inherent in doing nothing to innovate is that numbers of people with care needs will grow as government budgets shrink. Families, especially women, will be caught in the middle. Economies will suffer, but so will people, especially the elderly.

  One clear and present obstacle to assisting families in seeing to their loved ones’ care needs is the fact that government budgets are strictly attached to services, not to people. For example, when I appealed for help at home, I was told that Nicholas was entitled to a long-term-care placement, but I could not use that funding if I chose to look after him at home. We experienced constant battles between government departments, each of which pointed to the other saying, “[I]t’s not within our mandate to fund your family. Try another government department.” In our case, that discussion most often heated up between the departments of health and social services, but it could equally have occurred between different budget representatives within a single department. A freeing-up of budgets so that they follow a person, rather than the services they use could go a long way to making life much easier for society’s most vulnerable citizens.

  A look at almost every tragic case of exhausted parents abandoning their children with severe disabilities, or even doing them harm, shows that the tipping point of despair arrives about the time of the child’s fourteenth birthday. Some parents manage to last longer, but this early adolescent period is a wakeup call for mums and dads who believed that perhaps things would get better with age. The spectre of the endlessness of care demands for someone who is suddenly growing a beard or breasts can hit hard. The case of six-year-old Ashley X was one that caught the world’s attention and triggered an ethical firestorm in Seattle, Washington. In 2004, doctors at the Seattle Children’s Hospital performed a hysterectomy, removed Ashley’s breast buds and gave her high-dose estrogen to retard growth and sexual maturation — a procedure that her parents say has kept Ashley a child. They maintain that it is easier to care for their daughter at home, to carry her and to keep her free from menstrual cramps. They call Ashley their “pillow child” because she is most comfortable lying on a pillow in the family home. The problem was that in May 2007, the Seattle Children’s Hospital admitted that it broke the law by performing the procedure to prevent Ashley’s maturation because there was no court order or medical review by a board of ethics at the hospital.

 
The problem with this treatment is that it is irrevocable. It denies the potential for growth and change in the human body — an extreme act that may ease the burden of care to families and state, but at a terrible human cost. There is no question that lifting, changing and bathing an adult is much more difficult than performing those tasks for a child. But a solution that is congruent with our most fundamental beliefs about dignity would not be the Ashley treatment. Rather, I believe that we should offer parents of severely disabled children a placement at the age of fifteen. If the parents choose to keep their child at home, they should be entitled to the equivalent care costs to be used in the family home. Currently, placements are virtually nonexistent for those with severe disabilities who are not wards of the state. Most families struggle on quietly until their son or daughter turns eighteen at which point the relatively “rich” children’s services become a thing of the past. Society hasn’t woken up to the fact that this generation of children with severe disabilities raised in family homes are surviving into adulthood. Those with conditions such as Down syndrome were expected to expire in early adulthood only twenty years ago. Today, their life expectancy is within a normal range if there are no medical complications. In the parent groups that Jim and I frequent, the eighteenth birthday of your child is called “falling off the cliff.” Some schools will keep teens with disabilities until the age of twenty-one, but after that there are often long waitlists for day programs, and a young adult is relegated to sitting at home watching television. Most parents have to give up work at this point to assume full-time caring responsibilities when their contemporaries are at their professional peak or planning an early retirement.