Thursday 18 October 2012

Ethics of Fairness in Policymaking for Caregivers: Summing Up

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 or 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 that 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 whom pointed to the other saying “it’s not our 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 mentrual 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 congruous 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 nonexistant 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 parent groups, 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 wait lists for day programmes 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.  
For parents in this position, housing solutions are often the most pressing need.  Most want some kind of a home with the proper supports for their son or daughter, perhaps shared with a couple of other individuals who have similar care needs.  Access to tax sheltered savings such as the Disability Savings Plan combined with long term care funds released to the individual could go a long way to achieving this dream of “independent living”.  Innovative and flexible legal frameworks could give incentive to parents who wish to create social enterprise in housing provision for their loved one.  A house is purchased, refurbished with specialized features, rented out to residents with care costs rolled in and a small board of directors manages the household staff and payroll.  Profits from rental fees go repay investors and pay for building improvements.  Members of personal support networks represent residents on the board (if residents cannot represent themselves) and ensure quality control of all services.  Residents use a combination of state long term care funds and personal savings (via tax sheltered savings mechanisms) to pay for care and housing.  All social aspects of daily living are arranged by residents or members of their personal support networks.  
Seniors could use some aspects of this model.  Most people at retirement age have some savings in a Registered Retirement Savings Plan (RRSP).  I would propose that any funds redeemed from that plan and used to pay for care should not be taxed whatsoever.  This would entail providing receipts for care received and submitting them with an income tax return.  Any monies spent on care would be eligible for a 100% tax refund.   Governments cannot have their cake and eat it too.  Societies cannot euthanize all its citizens who are too old, ill or disabled to be productive and parents should never be allowed to surgically ensure their children never grow up.  A new deal that incentivizes saving and allows private investment into businesses that demonstrate a social purpose a way forward that offers some hope for a good life.  Amartya Sen recognizes disability as a central challenge to justice.  In the Idea of Justice, he writes “Given what can be achieved through intelligent and humane intervention, it is amazing how inactive and smug most societies are about the prevalence of the unshared burden of disability.  In feeding this inaction, conceptual conservatism plays a significant role.  In particular, the concentration on income distribution as the principal guide to distributional fairness prevents an understanding of the predicament of disability and its moral and political implications for social analysis.” (The Idea of Justice, pg. 260) I want a good life for my son and my elderly mother.  But I also want a good life for myself.  Some of the challenges that I have described in my family could be addressed by an injection of cash.  But a life that we value and have reason is one that has at its heart caring and belonging.  If life is a pie chart, money is only one slice.  The care of vulnerable citizens is a corporate act on the part of society; it’s not just the job of social workers.  It takes a village to raise a child, but it takes every citizen in every village to help sustain each other. 
I have never met another parent of a son or daughter with disabilities who did not know what they needed to thrive.  We know that paid care together with the love and support of friends, family and neighbours is for us, the key to a good life.  This is a future we must build for everyone, including those with differing abilities.  For the sake of love and decency, we must be allowed to build it.

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