Tuesday, 31 March 2015

What's New for Those Give and Receive Personal Support Care at Home

In my last blog post, I described the problems that make working conditions for personal support workers very, very difficult.  I described the challenges for clients who need personal support services, as well.

The Problems:
  • ·      Low pay
  • ·      Clients need many hours of support over long periods, so can’t afford the care they need
  • ·      Personal Support Workers, or PSWs can’t afford to insure themselves privately
  • ·      PSWs have few opportunity for regular, full-time work


Carol and Rod MacDonald are Canadian social entrepreneurs based in Toronto.  Together, they created a web-based company to match PSWs with clients who need care.   Currently, myPSW is operating within Ontario only, but Carol and Rod have plans to expand into the rest of Canada and the USA.  I had an opportunity to ask Carol about the model and why it’s innovative.

Q:  Describe myPSW and tell us why it’s so innovative.

myPSW is a very innovative model in that the website enables consumers of personal support services to independently search for, locate, hire and manage their own Personal Support Worker who lives right within their local communities.  This is innovative because this technology puts the power and control in the hands of the consumer of care and/or their family to manage without going through an agency or third party.  The site not only acts an effective means to link people, but also facilitates all the transactions right through the site.  What is really interesting is that something as vast as the internet/world wide web is used to build small communities of care in every little nook and cranny across the province. This would not be possible without technology, innovation and forward thinking.

Q: What are the benefits for PSWs? 

·       Client’s loyalty is with the PSW.
·       PSW determines her own schedule.
·       Geographic assignment of files based on a territory of PSW’s choosing.
·       Net earnings are significantly higher than industry average.
·       Legitimacy and no paper work as all invoicing/billing is completed on behalf of the PSW.  So     no hassles on the administrative side of being self-employed.
·       No canvasing of clients. Referrals are provided directly.
·       No collections. Funds are transferred directly into your account.
·       No upfront fees to create a profile.

Q: What are the benefits for clients/families?

·       Choice – you get to choose your PSW.
·       The peace of mind to know that your PSW is part of your local community!
·       Efficacy – find a PSW within minutes of arriving on the site.
·       Qualified – all PSWs have at least 500 hours of training.
·       Checked – all PSWs have provided a “Police Check” and “Liability Insurance”.
·       Legitimacy – professional billing charged to your credit card.
·       Reconciliation – ability to view PSW time slips on line.
·       No upfront fees.
·       All PSWs charge $20 per hour.
·       Electronic records provided for possible reimbursement or tax refunds.
·       PSWs earn significantly more than private home care industry average.

Q:  What is your business plan?  How will myPSW sustain itself financially?  

 We charge 15% of the $20 so our charge is to the PSWs, not the clients.  The PSWs end up making close to $17 (we have to charge them Harmonized Sales Tax or HST, so they net $16.61) gross. 

Q:  Can MyPSW be used together with agency or government provided home care services?  

Yes, myPSW can be used in conjunction with agencies or the government funded health care services.  At the present moment, we are in conversation with a few home care agencies in order to solidify strategic partnerships.  By partnering with these agencies, myPSW and the existing industry are working together to provide consumers a continuum of care and a "basket" of unique options from which they can choose.  Our plan, on a larger scale, would be to engage the Ontario Ministry of Health and Long Term Care further to discuss how myPSW might be introduced into the current service delivery model of the provincial home health services entry point.  myPSW is an ideal tool to be used in conjunction with individualized funding in health care budgets and this is our dream for the future.  

Silver Chain has eight palliative care teams in the greater Perth (Australia) area.  Each inter-professional team consists of palliative medicine physicians, specialist nurses, family doctors, social workers, counsellors, psychologists, pharmacists, and physiotherapists, personal support workers, resident doctors and volunteers.  

This full service, lead agency model for palliative care provides full-time employment for the PSW within a supportive team environment in which everyone’s contribution is valued.  Diagnosis-specific, full-service lead agencies offer PSW job security and the potential of insurance plan and government funding because of their multi-disciplinary nature. 

The innovative organizational structure in the Green House model is based upon “the conviction that we need a new framework around which to organize the experience of those who protect, sustain, and nurture our elders.” The structure challenges the traditional nursing home hierarchy to create environments that empower elders and those who are closest to them.

The direct-care providers (PSWs) function within self-managed work teams to provide the day-to-day care for the elders and act as managers of the home. These individuals, called Shahbazim, partner with nurses and other clinical team members to create an empowered clinical care team of excellence. The Shahbazim report to a Guide, who is responsible for providing the team with the support, accountability and resources necessary for success in their role.  The PSW role, reinvented as Shahbazim, gives care workers responsibilities for carrying out all activities of home life for elders.  This means cooking, personal care, ordering of supplies and cleaning.  Shahbazim report very high job satisfaction. 


Some jurisdictions are experimenting with congregated care.  Service provider agencies that staff the needs of several clients within one residence are looking at new ways of bringing in a single PSW to serve several clients in the same building.   In my mother’s seniors’ residence, multiple PSWs from both private and government funded agencies come in to assist through a revolving door.  The travel time and lack of coordination amongst clients and staff in a single location must have a huge and unnecessary cost.  It’s encouraging to hear about models that make life easier for both clients and itinerant care staff.  The congregated care model offers greater job security for PSWs and has the potential of lowering costs for clients through group purchase of service.


There is another answer to full-time, fairly waged employment for PSWs that would also be affordable for those who need care – a long term care national insurance plan.  That’s the subject of my next post.

Wednesday, 25 March 2015

A Fight Between PSWs, Clients and Agency Service Providers Spells Trouble For All

Over the years, our family has relied on the help, friendship and dedication of personal support workers, both for our son Nicholas and more recently for my mother who needs assistance due to her age.  These support workers worked part-time for low wages.  More often than not, they were women who were immigrants with skillsets and qualifications not recognized in our country.  Once, we had a physician from Haiti who worked for us through an agency for $11.00 per hour.  Another time, we had a home support worker from the Philippines who helped with Nick's care while her sister looked after our helper's two young children back in her homeland. 

Personal Support Workers, or PSWs, are starting to fight back, but their wage increases equate to worry for clients, families and service provider agencies.  

Last week, an article by always erudite Howard Gleckman caught my eye.  He wrote in Forbes: 

Should the aides who provide home care for frail elders and younger people with disabilities receive a living wage and decent benefits?  If they do, how can families, who often are unable to afford care today, be expected to pay those higher wages and benefits?  Should the market be allowed to set these prices, or should government intervene through minimum wage and mandatory overtime laws? …. These questions have set off an enormous, but largely unnoticed, political firestorm.  In some states, they have pit states against the federal government, people receiving care against their aides, and large home care agencies against independent direct care workers.

In Ontario, exactly the same questions are being asked. This time last year, the then Ontario Liberal Health Minister Deb Matthews and Finance Minister Charles Sousa announced an election promise of an increase in the minimum wage for 34,000 publicly paid Personal Support Workers to $16.50 an hour by April 1, 2016, up 32 per cent from the current rate of $12.50.  Implementation of that promise hasn’t been easy.   According to the Canadian Union of PublicEmployees (CUPE), some home and community care agencies have chosen not to implement the wage increase or they exclude sick leave, vacation and training hours in the new hourly wages.  The sum total effect, says a CUPE spokesperson, is that most Ontario PSWs have yet to receive a wage increase.

The real lives of personal care workers are documented in a new film titled CARE, due for release later this year.   The trailer is riveting and I recommend watching it HERE for a clear picture of the human side of our crisis in home and community care.

The care workers depicted in the film are all women.  They are mothers and daughters who have left their own families behind in more impoverished countries in order to care for more affluent strangers in the United States.  Many care workers in Canada, the UK, Australia and New Zealand match this description.  Eva Kittay drills down into the issues surrounding immigrant care workers and the role they play in a larger, profit driven dynamic. 

The migration of care workers is caused both by a pull, the need for care workers, and a push, the need of these women to provide for their families. If the pull is the creation of demographics, of women’s entry into the labor market, of the insufficient response of men to the demands of care, of inflexible work structures, and of levels of mobility that spread family members far and wide, the push is created by deeply unjust global economic forces that include a heavy indebtedness of poor nations, by the structural adjustment policies that cut services, gut public education, and drive the middle-class civil servants lower on the economic scale, by the various forces that have been responsible for increasing economic inequality globally, by governments that view the exportation of care workers as a significant source of revenue, to mention but a few. The push, in short, is created by forces of global injustice.

The truth is that people need care and care workers must be able to earn a living wage.  My next post will explore innovation to address these dual realities.  Stay tuned!

Saturday, 21 March 2015

A Policy Framework to Support Caregivers

Yesterday I presented at a Carleton University conference titled 'More Than Getting By: Putting Daily Life at the Heart of Our Struggles'.   I was one of the few non-academics - most were scholars in the areas of political economy, women's studies, sociology or social work.   My session was titled 'The Costs of Care' and presenting alongside me was Mary Jean Hande who talked about 'Survival and Resistance in Austere Times: Care Work, Disability Justice and Revolutionary Praxis.  As well, Anna Przednowek talked about 'Caring for the Carer of Adults with Intellectual Disabilities: A Policy Anomaly'.  

It was fun.  Talking about the deeper meanings in our personal lives, especially delving into the hardest challenges and placing that experience within the context of philosophy and economics is my idea of a good time.  The general thrust of the morning was 'how can we think about care so that families are supported by their communities and by their country?'

My topic was 'The Capability Approach - A Policy Lens for Extreme Caregiving'.  Here's what I said:

     I am an extreme caregiver and what I have learned is this: trying to keep our son alive while maintaining my own physical and mental health was an impossible task when I tried to do it alone.  One of the greatest sources of my personal stress was trying to negotiate with service providers to access what little help was available - help that wasn't really what we needed in the first place (but it was better than nothing).  I had to find a different policy tool that would enable families to be supported in ways that suited them, given their givens.  What I found was Amartya Sen and the Capability Approach.

       Amartya Sen won the Nobel Prize in Economics in 1998 for his development of the Capability Approach, a tool to assess freedom and wellbeing within circumstances of extreme poverty.  In his Nobel address, Sen said, “The Capability Approach sees individual advantage not merely as opulence or utility, but primarily in terms of the lives people manage to live and the freedom they have to choose the kind of life they have reason to value. 

     The basic idea here is to pay attention to the actual “capabilities” that people end up having.  These capabilities depend both on our physical and mental characteristics as well as on social opportunities and influences (and can thus serve as the basis not only of assessment of personal advantage but also of efficiency and equity of social policies.”  (Nobel Prize Address, 1998)

      For me, Sen’s Capability Approach represents a lens through which I can assess the value of my life, understand my choices in relation to programmes, services and policies that affected us throughout our son’s life.  Sen speaks of the “freedom to live the life you value and have reason to value”.  I had a life mapped out for myself before Nicholas was born, a life that I imagined I valued.  The circumstances of our family life with Nicholas forced me to reconsider my values and my reasons to hold those values.  
     Amartya Sen has focused on issues relating to poverty and justice, but he has also spoken about disability.  At a World Bank Conference on Disability in 2004, Sen lamented the failure of theories of justice to adequately address the issue of disability.  In his keynote speech at that conference, Sen explored the relationship between wealth, disability, freedom and justice.  “Wealth or income is not something we value for its own sake.  A person with severe disability need not really be judged to be more advantaged than an able-bodied person even if he or she has a higher level of income or wealth than the thoroughly fit person.  We have to examine the overall capability that any person has to lead the kind of life she has reason to want to lead, and this requires that attention be paid to her personal characteristics (and this includes her disabilities, if any) as well as to her income and other resources, since both can influence her actual capabilities.  To ground a theory of justice on the informational foundation of opulence and income distribution would be a confusion of ends and means:  income and opulence are things that we seek “for the sake of something else” (as Aristotle put it). (Keynote Speech, Second International Disability Conference, World Bank, 30 November – 1 December 2004.  See www.worldbank.org)
Here, Sen is distinguishing between “earning handicaps” and “conversion handicaps”, or how one is able to convert money into good living.  Giving someone with disabilities, or their caregiver a million dollars doesn’t give them a good life if the money stays in the bank and the individual sits at home unable convert his riches into enjoyable living.  It is easy to see why, for people with disabilities and their families, this line of thinking is extremely helpful in understanding how anyone giving or receiving care can begin to identify and exercise practical choices that nudge individual circumstances toward a life that one values and has reason to value.   Policies that enable people to exercise their capabilities, such as individualized funding, and accessible public transportation, for example, help people to exercise choice and experience life satisfaction. 
In our family, I wanted to be good mother and I wanted to be supported in that role.  But the demands on me resulting from Nick’s disability combined with the demands of the medical, social and educational systems conspired to make me feel overwhelmed and desperate.  The support systems that did exist seemed designed to support themselves, rather than Nicholas, me, and our family. 
Our family survived, but only because of perseverance, a solutions-based approach and innovative and willing community partners who partnered in our advocacy efforts.   I would say that our family remained intact by the skin of our teeth.  We are the embodiment of the saying ‘what doesn’t kill you makes you stronger’.  But we should never have had to fight so hard in isolation to achieve what most people call normal.   In my opinion, the Capability Approach is a good place to start in redesigning a policy framework to support children and adults with disabilities together with their families giving care.


Saturday, 14 March 2015

Special Words and Deeds to Support a Caregiver's Hurting Heart

Recently, I wrote about friends who aren't sure how to support a caregiver in distress.  I talked about how difficult it is for caregivers themselves to know how anyone could help in situations that are so trying, they are almost beyond description.

This week, I came upon two examples of creative and profound support.


Today, I was chatting with a fellow caregiver about a mutual friend who is in a firestorm of family tragedy.  My friend is from a different culture and she sometimes conjures phrases to create deeper meaning than could be found in native english.  Today she said, "I just wish she (our mutual friend) was a baby again so I could scoop her up and hold her."  I found this expression so deeply compassionate and empathetic - I will use these words when I comfort anyone I care about who is trying bear the unbearable.


My friend Julie Drury is a fellow disability Mom and blogger.  Julie's young daughter Kate has Mitochondrial Disease and is currently undergoing a bone marrow transplant in hospital, after having a course of strong chemotherapy in preparation for the transplant.  Kate's older brother generously and bravely donated his bone marrow to help his sister be well.

Last week, Julie posted a photo of Kate wearing her hair in pigtails tied with red ribbons.  At first a few close friends and family began tying pigtails in their hair and sending selfies to the Drury family in hospital as a sign of caring and solidarity.  Now, the hash tag #pigtails4kate has hundreds of hits and everyone who has ever known and cared for and about the Drurys has a pigtail selfie posted to Julie's facebook page.  Even family pets are wearing red pigtails.  The Drury family will be isolated in hospital and subsequently at home for six months while Kate's immune system remains compromised.  But one thing they won't be, is alone.  #pigtails4kate

For up to date information on Kate's bone marrow transplant, visit Julie's blog at www.searchingforsolidfooting.com.  To support Julie's family, visit: HERE.