Sunday 5 May 2013

When A Family's Love is Not Enough

There are some people who, in the prime of their lives, cannot conceive of getting old.  They imagine that only other people have babies with disabling conditions.  They champion independence and despise infirmity.  Those people might believe that if anything catastrophic ever DID happen to them, then surely the government or some agency or other would step in to help.


Families living in the trenches of caregiving know only too well that there is not enough help (if any at all).  Day programmes, respite care, supported housing options, home nursing are all just pie in the sky dreams for many who cannot afford to pay privately for all the services they need.

My last post told the story of an Ottawa (Canada) mother, Amanda Telford, who was forced to abandon her 19 year old son Philippe in the offices of the local social services center.  Philippe Telford-Chiasson has a  severe form of autism, challenging behaviors, tourettes syndrome and diabetes.  Last week, he ran away, managed to unlock a medicine cabinet at home where he found and swallowed 14 blood pressure tablets and then ran away again.  Amanda Telford and her husband lost most of their support services once Philippe turned 19. (Adult services in Ontario are poorly funded and waiting lists for services are years long.)  The events of last week were the last straw and all of Canada watched on the evening news as a devastated mother said a tearful goodbye to her son on the steps of a government building.

Families like the Telfords have something in common with the legions of caregivers struggling to manage the complex needs of relatives with cancer, Alzheimer's, stroke or any number of disabling conditions.  Sometimes, the medical and social/emotional needs of a loved one are just too much for one person or even one family to manage.

We can share the social/emotional care (although it's trickier in the case of mental illness) and specialised web-based platforms such as Tyze Personal Networks are terrific for that.  But we can't share nursing or personal care.  We can't ask friends or family to stay awake all night to prevent someone wandering or monitor respiration.  We can't ask them to change dressings or assess medication side-effects.

The demographics of aging are unprecedented - huge numbers of baby boomers are aging into disability and people with disabilities are living into old age.  So, what can we do?  What will be required of citizens, governments and businesses to ensure that we don't find ourselves in Amanda's Telford's nightmare, or something like it?

Part of the answer to that question is in the latest newspaper report on the Telford case titled "Autistic teen left by mother gets a home".  The key sentence in the article is this: (Amanda Telford) "What I really like is that developmental service agencies came together and worked with Champlain District CCAC, which is Ministry of Health funded."  Philippe Telford needs developmental services because he is autistic and has developmental disabilities.  But he also has complex health challenges due to his diabetes.  Two government ministries worked together to create a solution that resulted in safe housing with appropriate support, and that is novel.  Inter-ministerial funding, to say nothing of public/private partnerships are difficult to monitor.  For bureaucrats, the need for accountability and transparency can sometimes override service provision in their list of priorities - we live in a very risk averse society and politicians know that vulnerable people and their families can represent a political minefield as well as a financial sinkhole.

But sharing the burden of care across government ministries IS the way forward.  Someone will just have to figure out the accountability issues.  Helping all the older people in our society to stay at home longer, helping their families to stay healthy and happy, enabling young adults with disabilities and their families to plan their futures without fear and dread - all these things can be done.  To do so, we need to share the financial burden across sectors AND seek innovative business opportunities that have shared social objectives as well as sustainable financial models.

In my own family, we DID find ourselves in something like the Telford's nightmare.  It was 2004 and my son Nicholas had uncontrolled hip pain.  Oral morphine, muscle relaxants and nerve blocks did nothing to stop the screaming.  A complex condition of untreatable sleep apnea put Nick on the palliative care list - doctors said he might have two months to live.  Maximum allowable levels of home nursing support hardly touched Nick's complex needs and our case was brought forward to our local 'committee of last resort'.  A full fledged appeal to override policy on maximum support began in earnest.  When I complained to a nurse that the prescribed amounts of pain medications did not alleviate Nicholas' excruciating pain, I was charged with child endangerment because I had reported to a nurse that I gave a small amount of extra morphine at 3am when I could not reach the hospital pain team by phone to advise me.  The Children's Aid Society inquiry found that Nick was at risk due to lack of services - they declared the care we gave to our son was exemplary.  The case reached the provincial appeal board where senior representatives of multiple government ministries discussed how to help us and how to pay for that help.  Finally, we got a deal - a deal that paid for nursing care Nick needed.  But that deal ended the day our son turned 19.  I tell this story in my book, "The Four Walls of My Freedom".

In both Canada and the UK, representatives of Health as well as Social Services would talk about our son and point to each other, saying "this case is for you!"  For many years, as with the Telford family, nothing happened due to political wrangling and our family paid dearly for that inaction.  In our experience, the system failed when they tried to assign Nicholas to just one homecare budget.  We received the support we needed when multiple partners came to the table to collaborate and innovate.

As a country that is part of North American society, can we assist the needs of vulnerable people and their families in ways that are individual, imaginative and flexible?  Can we bring social entrepreneurs into the equation to link communities and families with medical education opportunities such as perhaps health care certification for trained new immigrants?  Can we begin to value the giving and receiving of care?  I believe that we can do all these things.  The first step is realising that no one family, no one government funding entity, and no one sector of society can do it alone.


Cecelia Salamone LPC said...

I applaud your efforts and determination in helping your son. You managed to accomplish services because you are obviously a persistent person but also highly resourceful and diplomatic. We need more people who are able to bring multiple groups together for the benefit of a common goal. I often wonder what will happen as our generation ages. I realized it is a serious concern in the states but did not realize Canada share the same type of concerns.

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