Fairness in Policymaking for Family Caregivers - Part 2

Continued.... this is Part 2 of a reflection on fairness in policymaking for family caregivers.   

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 18 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 500,000 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 annual 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 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 in to 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, do-able 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.  

  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 families like mine finally have a financial tool to plan a decent future for their loved 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.  The demographics of aging populations in developed nations around the world are the culprits.  A US Census Bureau report of July 20, 2009 is full of terrifying numbers.  Italians are advised to look away now: their country’s population will in the space of thirty years shrivel dramatically, while numbers of elderly women will outstrip every other country on the planet.  Emigration is sapping that nation of its employable youth and huge numbers of pensioners have all but bled the state coffers dry.  (The Guardian, July 21, 2009 pg.17)  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.  At a roundtable of economists and accountants hosted by the Lord Mayor of London Ian Luder in September of 2009, 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), it is estimated that about ten years at end of life are spent with some form of disability.  (Mayhew and Smith, 2009) In other words, people are living longer, but not without suffering all the effects of very old age.  “Intuitively as the health care system becomes more successful at lengthening life the possibility of greater social care needs is increased, insofar as any extra years are spent in poor health have limiting effects on activities of daily living, or lead to the greater occurrence of other diseases such as dementia.  Such trends have the capacity to significantly affect the UK economy.” (Mayhew 2009)  No western democracy is immune from the problem.  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.  Charles Taylor’s notion of lower functioning and higher functioning is helpful yet again.  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. 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 that will not bankrupt families and drive their primary caregivers to an early grave.  Governments have a responsibility to enable active citizenship and the benefits of altruism – secondary schools in Ontario are doing this by requiring community service of 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” (www.icc-icc.ca/en/about/index.html).  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 programme that forges a connectedness between people that if extended, will benefit vulnerable and isolated citizens as well.