The Four Walls of My Freedom Read online

  The move to the UK in 2006 marked a turning point for all of us. Everyone was much happier. Nicholas reported extreme satisfaction in almost all domains. Interestingly though, he experienced relatively high unhappiness in the area of education and learning, even though he completed an online college course during that year. When queried, he replied that he missed the camaraderie of his school environment. Nick’s other low score in the domain of spiritual state reflected his opinion that the domain itself was of little importance to him. Natalie reported a healthy improvement from her scores of 2004, but some shortfall from perfect satisfaction was the result of her struggle to make friends during her first year in a new country. My scores, although much improved since 2004, indicated that my recovery from a period of extreme unhappiness (or crisis) was slower than the children’s — not an unusual phenomenon for any mother!

  Nick’s scores for 2009 came as quite a surprise. My predicted scores for him in most domains were quite high — I thought he was happy. I mistook his high scores in the area of play and fun for a high level of general wellbeing. But his low scores, especially in the areas of friendship, family relationships and meaningful work made me feel sad. I queried him about family relationships and he said that of course he missed all our relatives back in Canada, but he also had a complaint about our immediate family. He expressed a sense of frustration that Jim’s interaction hadn’t changed much over the past few years. Nicholas said that although he had grown into a mature man, his father still addressed him as a teenager. These results prompted a meeting between father and son where both had the opportunity to elaborate on their feelings about evolving relationships.

  In Nicholas’ case, some of his high unhappiness scores reflected the real lack of opportunity he experiences due to his disability. This applies to the domains of harmony with nature as well as beauty and creativity. In 2006, Nick was more satisfied in these areas, but when I asked him about that, he reported that everything seemed better in 2006 because moving to England was so much fun and exciting.

  As a result of the index, I was able to chat with him at length about some ways in which we might change his lifestyle to make him happier. We talked about how to find at least one activity every day that would involve learning and meaningful work. Nicholas indicated that he enjoyed doing the index because his parents and helpers could now help him pursue more fulfilling activities. Nick’s wellbeing remains a work in progress.

  The index that we used helped everyone in my family to better understand how we felt about our life opportunities, choices and actions over time. But should such a tool, or a more elaborate version of it, be used by governments to inform policy-making? The Hon. Roy Romanow and others at the Canadian Institute of Wellbeing believe it should. A Canadian index exists, and efforts are underway to develop a composite index — a single number that moves up or down (like the TSX or the DOW Jones Industrial), offering a snapshot of whether or not the overall quality of life for Canadians is going up or down. According to the institute’s website:

  The Canadian Index of Wellbeing (CIW) is a new way of measuring wellbeing that goes beyond narrow economic measures like GDP. It will provide unique insights into the quality of life of Canadians — overall, and in specific areas that matter: our standard of living, our health, the quality of our environment, our education and skill levels, the way we use our time, the vitality of our communities, our participation in the democratic process, and the state of our leisure and culture. In short, the CIW is the only national index that measures wellbeing in Canada across a wide spectrum of domains.

  The CIW goes beyond conventional silos and shines a spotlight on the interconnections among these important areas: for example, how changes in income and education are linked to changes in health.

  The CIW is a robust information tool, one that policy shapers, decision-makers, media, community organizations and the person on the street will be able to use to get the latest trend information in an easily understandable format.42

  The Canadian index includes four broad categories of wellbeing for assessment: living standards, healthy populations, community vitality and democratic engagement. For example, the following headline indicators fall within the Community Vitality Domain: belonging to community, participation in group activities, volunteering, number of close relatives, providing assistance to others, experience of discrimination, trust, walking alone after dark, violent crime and poverty crime. The indicators are a perfectly good set of subject areas for determining whether an individual, group or population feel relatively safe in the context of their community relationships. But in my family’s case, the case of a life with disability, these indicators do not have the potential to tell the “real story.” In 2004, for example, the worst year for me and Nick, our scores in many of these indicators would have been high — belying the misery we actually experienced. The story they do not tell is the lack of freedom that we experienced to do anything we wanted due to the oppression of pain and illness. Because I was trying to manage more or less on my own, there was no shortage of caring on my part. I still managed to volunteer at my children’s schools that year. My extended family did their best to be supportive. My score in the caring for others category would have been off the scale. Perhaps what this scale lacks is an indicator that inquires whether one has the capability to do something unplanned for fun. Ever. If Mr. Romanow and others at the Canadian Institute of Wellbeing would like to know how many people are affected negatively by disability (and this includes caregivers), a question about spontaneous outings might be a good place to start. And the informational tools for policy-making that encompass the real concerns of those with care needs should be front and centre when it comes to sourcing innovative solutions to serving the needs of an aging population.

  CHAPTER SEVENTEEN

  Good Ideas and

  Practical Solutions

  For the first time in history, people with disabilities will have wealth. But, will governments allow them to contribute to their own care and lifestyle? Cost-sharing between ministries, let alone between public and private sources, is a gigantic headache as far as bureaucrats are concerned.

  Take our family, for example. I have thought long and hard about how to arrange a safe, happy future for Nicholas outside of our home. Long-term-care hospitals that are operated by the provincial Ministry of Health and Long-Term Care do not want Nicholas because they cannot staff his overnight one-to-one nursing care for sleep apnea. They understand that Nicholas requires facial stimulation when he stops breathing during sleep, but they simply cannot guarantee that someone will be there to do it. The provincial Ministry of Community and Social Services operates group homes for adults with developmental disabilities, but they do not have the complex-care nursing services that Nick requires. Provincially funded spots in group homes for people with developmental disabilities are oversubscribed with long waiting lists, and they would not be suitable anyway for Nick whose needs are primarily health-related.

  A fairly recent phenomenon is the cropping up of private “for profit” group homes that cater to individuals, whatever their needs. The uptake on places in these facilities has primarily been from individuals who can manage to pay the private fees by using resources they accrued through a post-accident insurance payout. I decided that Nicholas would need a place at one of these private group homes. From England, I called one of the private homes, out of interest, and asked if they could provide for Nick’s needs. “Sure,” the woman replied, “we can provide any service that your son requires. And we can add or take away services according to his changing needs.” Costs, of course, are astronomical. But on the whole, I thought if money was no object, it would be perfect. Nicholas would be in a home, not a hospital. We would ensure that he always had friends and family in his life through a PLAN network. He could come to our family home for dinner if he felt up to it, because we would ensure that we lived nearby.

  I decided to speak to N
icholas. First, I asked him if he would like to move out of our house and live somewhere on his own. I asked him if he ever dreamed of living in his own place. Nick’s eyes were wide and his back was arched — a sure sign of panic, so I reassured him that I was just asking for future reference. He eyes narrowed and he considered the question. “Well,” he told me, “I would like to live with my old friend John Bilder, or maybe Adam Forster. That would be great! Can I do that?” Both John and Adam are former caregivers and John remains a very close, lifelong friend. “No,” I replied. “John works full-time and Adam has a new baby now.” We both agreed to think about the future and to chat again later.

  I resolved to put together a financial and social plan for Nicholas’ future that actually felt good to him and to us. I decided that a private group home, if cost-shared between the two provincial ministries concerned with people like Nicholas (Health and Community and Social Services), combined with our private funds, could be the way forward. The Ministry of Health could pay for Nicholas’ overnight nursing care and any other costs deemed strictly medical. The Ministry of Community and Social Services could fund the day nonprofessional health-care workers as well as case management fees. Our family would fund the basic housing costs as well as any other fees involving food, friends and fun. Currently, an arrangement such as I have described could never occur under our bureaucracy that defines itself by its silos of funding and function. But the status quo will be forced to change soon, because I am not the only parent who will want to contribute to a high standard of living for her son with high needs. Furthermore, Nicholas is leading the charge of the first generation of children with disabilities to grow up having personal wealth. And he wants to spend it.

  Families like mine are resilient. We are capable of surviving a surprising amount of adversity. But we cannot do this unsupported, with no recognition of our contributions to our communities and our country. A new deal for families should include policies that encourage contribution to care without losing state benefits; as well, it should encourage families to save for the costs of care, knowing that governments will not take back those savings in the form of taxes. These are the key elements of a secure future for our vulnerable citizens. Any policy that purports to help citizens have a good life should be least restrictive and most supportive. PLAN describes such a good life as being supported by caring family and friends, being encouraged to participate in and contribute to one’s community, having one’s wishes and choices respected, having financial security, living in a place of one’s choosing, and being protected from abuse and exploitation. This definition of a good life, applied to all, even the most vulnerable and disabled, presupposes the equal human worth of each individual citizen. It also assumes that with proper support, most people are capable of resolving their own challenges efficiently.

  The past half-century has seen the closure of residential care institutions for people with disabilities and growth in numbers of nursing homes for the aged. Who cares for and who pays for all these dependent individuals is a problem governments have struggled with ethically, financially and politically over the years. Governments’ first response has been to devolve responsibility for vulnerable citizens to families, usually women. Liberal values of “free and equal” citizenship, combined with a drive for independence originating in the disability movement, have further marginalized those with cognitive disabilities or mental illness. For them, and for their families, independence is a cruel fiction. Compounding the problem for families is the fact that the first response of governments has been to minimize damage to their budgets by limiting access to community care, usually by increasing thresholds of eligibility. Thirty years ago, tube feeding would have been a nursing need requiring hospitalization. Today, families are expected to roll this task into their day alongside walking the dog and fixing school lunches. What to do with people who are completely dependent and whose families cannot or will not support them is a huge problem for contemporary societies. Equality-based policies have failed people with disabilities and their families — we are not a society of equals.

  In the UK, a grand social experiment is underway. The Labour government under Gordon Brown took devolution of social care one giant step further by creating personal budgets for those receiving government-funded care at home. Supporters of this regime decry the old system of take-it-or-leave-it day programs, likening this to “someone taking all your money and spending it on things you don’t want or need.” The UK government at all levels is hoping that people will creatively make their disability-pension cheque go further by being imaginative and flexible. But there is a worry among some that this policy represents state-sanctioned abandonment of its neediest citizens and a downloading of responsibility for their welfare to those who are least able to shoulder it.

  One thing is clear. Governments cannot single-handedly provide the elements of a good life for vulnerable people who require care in the community. But families cannot shoulder the burden of care unassisted either.

  So what are the roles of families and governments in supporting society’s most vulnerable citizens? What kinds of policies can facilitate true partnership between governments and families who seek to care for someone needing help? One such policy is the groundbreaking Canadian Registered Disability Savings Plan (RDSP). In the late 1990s, Al Etmanski of PLAN called me and told me of his idea to create a fund for people with disabilities. I remember saying, “I have a savings plan for my daughter’s university…why can’t I have a savings plan for Nicholas’ future?” Hundreds, if not thousands, of parents chimed in to a national conversation about financial tools that could transform the lives of people with disabilities from victims and consumers of tax dollars to contributing participants in our market economy and masters of their own destinies. The RDSP was announced in the Canadian federal budget of 2007, and our family has one now for Nicholas.

  Previous to this plan, families had no tax-sheltered savings vehicle that could be used specifically for the future of a loved one with disabilities. Furthermore, if someone received government disability-pension benefits every month, they were not allowed to have more than $5,000 in assets. A friend whose daughter had recently turned eighteen was forced to sell back her daughter’s prepaid funeral plan in order for her to qualify for disability-

  pension benefits — the funeral plan was worth more than $5,000. This “all government” or “all private” finance thinking ensured that people with disabilities were effectively poor and had limited choices in terms of their discretionary spending. The thinking was that anyone who had private finances, yet was in receipt of government benefits, was guilty of welfare fraud. To be disabled and accept financial assistance from the state meant you had to be poor, or at least be SEEN to be poor.

  The RDSP, on the other hand, is a new savings plan that will assist families in planning for the long-term financial security of their relative with a disability. Over time, it is estimated that the RDSP will provide billions of dollars to supplement income, enable home ownership and enhance quality of life for as many as half a million Canadians with disabilities. The plan is similar to an education savings plan in that contributions remain tax-free until withdrawal. There are no annual limits on contributions, but there is a lifetime limit of $200,000, and these funds can be contributed by any family member or friend. There are no restrictions whatsoever on how the funds are used by the beneficiary, and when funds are withdrawn, they are taxed in the hands of the beneficiary at a much lower rate. For lower- and middle-income families, the federal government will contribute to the plan as well through the Canada Disability Savings Grant. For families with an income less than $77,664, the grant will contribute $3 for every $1 contributed on the first $500 and subsequently $2 for every dollar on the next $1,000. If the family income is over $77,664, the government will match dollar for dollar up to $1,000.

  But those families with little or no capability to contribute to the plan are not excluded. When ann
ual income is less than $21,816, the Canada Disability Savings Bond will provide $1,000 per year without any contribution from the family at all. Currently, British Columbia, Newfoundland and Labrador, Saskatchewan, Manitoba, Yukon, Alberta, Nova Scotia, Northwest Territories and Ontario have all exempted the RDSP as an asset and income when determining eligibility for disability pension benefits. Quebec, New Brunswick and Prince Edward Island have exempted the RDSP as an asset, and have partially tax-exempted payments from the plan. Nunavut has not yet made a decision on the plan.

  Of course, just having savings does not make someone happy or keep them safe. In fact, someone who has the combination of learning difficulties and ready cash is even more vulnerable to exploitation. Furthermore, someone who is in need of social care is likely to have very limited means of converting his funds into good living. This is where personal networks come into the picture of support. The PLAN values state clearly that people who have disabilities or are otherwise suffering from the effects of social exclusion need money AND caring friends to create a good life. Personal support networks consisting of family and friends who are coordinated in their caring tasks can fulfill a trustee role, ensuring accountability and transparency. The idea of distributive justice is difficult to apply when families who care for an aging parent or child with disabilities are so isolated. When my mother-in-law knew that we were struggling desperately with Nick’s ill health, she used to say, “Now if there’s anything I can do…but I’m sure there’s nothing I can do.” She was a kind person who was completely flummoxed by the scale of what might be required to be helpful. But when I asked for a banana loaf or company in Nicholas’ hospital room, she was only too happy to oblige. The carving-up of a gigantic need into small, doable parts is the trick here. Ensuring that no one person is burdened by the lion’s share of dependency work is key, alongside a shared and celebratory love for the person at the heart of the network.