Friday 12 October 2012

The Ethics of Fairness for Family Caregiver Policy, Part 1

With the United States election dominating the news, I thought it was a good time to talk about fairness in policy-making for family caregivers.  In my book, The Four Walls of My Freedom, I told the story of our family journey of caring for our son, Nicholas.  I used our experience as a springboard for discussing wider issues of ethics and economics of family caregiving.

Here is a bit of the chapter titled "Good Ideas and Practical Solutions":

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 and 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.  To define such policies and articulate the ethical framework that drives political consensus, thinking about what a good life actually looks like, seems the correct place to start.  Planned Lifetime Advocacy Networks (PLAN) defines 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. If governments and families were to partner in order to realize this vision of a good life for vulnerable citizens, how might the policy read?

     The last 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 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 has taken 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 programmes, likening it 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.  

Stay tuned for Part 2 of this mini-series. 

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