Wednesday, 24 November 2010

Delight and Inspiration

Many people will recall the wonderful animated film "The Man Who Planted Trees" by the Canadian artist Frederic Back. The film charmed millions, including the Academy Award judges of 1987. Based on an allegorical story by french author Jean Giono, the film uses Back's delightful drawings to describe the life of Elzeard Bouffier, a shepherd who single-handedly re-forested a desolate valley in the foothills of the Alps.

Giono's story was published under several titles: "The Man Who Planted Trees", "The Story of Elzeard Bouffier, the Most Extraordinary Character I Ever Met", and "The Man Who Planted Hope and Reaped Happiness".

Frederic Back is a Canadian national treasure. He is a great artist, award winning filmmaker, passionate conservationist and dreamer. Back uses his memories, his talent and his love affair with nature to gently transport his audience to a place of great possibility. Even the titles on his webpage excite - "Picture a Greener Future Contest", "Learning About First Peoples" and "The World Cultures Section: An Illustrated Travelogue". On his website, Frederic invites children of all ages to share their artwork, ideas and their inspirations. The power of his narrative memory is in its beauty and longing for a better, greener, gentler world.

Here, Frederic remembers the generosity of his mother:

A welcoming home
I told them my father was a musician and my mother an excellent cook, and brought many of them home. My kind mother always made something good. But one day a small orchestra - five musicians - came with me. I can still see them, climbing the five floors to our apartment with the bass drum, the cymbals, the cello and the rest of their gear! My mother's eyes opened wide, but she got them settled, peeled potatoes and found a few eggs to give them a good feast. Getting home from work, my father was very surprised to see the instruments piled in the landing and so many people at the table! But soon they were talking about what was happening to traditional music and the many, often talented musicians who played it. My parents didn't scold me, for they were very hospitable and sympathized with anyone in need, just as they welcomed the lost birds, dogs and cats I brought home. We always had several cats and for a few years we had a magpie that used to sit on my shoulder and noisily tell me its life story. It pulled out the fur of the cats sleeping under a sheet of newspaper, and every morning the cats would look for the little pieces of meat the magpie had hidden in its cage.

The family movement of parents of children with disabilities have a natural and deep understanding of Frederic Back's intentions. We champion the idea that beauty is not disposable and that its longevity is worth fighting for. There is much to learned from nature and the everyday life of a loving family.

For 86 years, Frederic Back has used his extraordinary talents in combination with a loving, generous spirit to nudge his public into creating a kinder world. Long may he live.

Sunday, 21 November 2010

An Important Book for Anyone in Interested in Disability

"Cognitive Disability and Its Challenge to Moral Philosophy" may sound like a daunting title for non-academics. But, take it from this parent - this book is for anyone who cares passionately about the human worth of people with disabilities. It's fascinating reading for anyone who is concerned with fairness and a good life for all citizens.

I warmly commend this fascinating book to all who wish to explore issues of conscience in society.

Friday, 19 November 2010

Nicholas is Home

The eagle has landed. Nicholas is home. He is catching up on missed time online and I am going to have a shower and go to bed very early. We all feel so relieved that Nick's pain and spasticity are so much better with a functioning intrathecal pump and we just happy to be home together. Thanks to all for your thoughts and prayers. Next week, a few new blogs!

Thursday, 18 November 2010

What Will Tomorrow Bring?

My son Nicholas had surgery on Tuesday to replace a broken spinal cord pain pump system. He had a his first good day in a long while today. Hopefully, the xray taken today will show that the new pump is in place, there will be no complications overnight and tomorrow afternoon we can come home.

Nicholas feeling more energetic, Mum feeling like that goo ghosts leave behind. Once Nicholas is home and absolutely fine - that's when I will sleep.

Saturday, 13 November 2010


Yesterday, I brought my son Nicholas to the National Neurology Hospital in London. I requested (rather energetically) an emergency appointment because Nick's left leg was stiff, painful and periodically in spasm. I had a feeling that perhaps his spinal cord pain pump wasn't functioning properly. We arrived at noon and waited in the lounge area of the neuro-rehab inpatient unit. We had suitcases with us, because the doctor told us that Nick would be admitted. A special x-ray of his pump using radio-active dye was planned for the afternoon. An electric air mattress was located and placed on Nick's bed after a member of staff had cleaned and disinfected his room. Finally, we left the lounge to get settled. At 3pm, we were brought to the x-ray area where Nick was to have his procedure. We got him transferred to the narrow table under the cameras and I went outside to await the results. After twenty minutes or so, the doors opened and our doctor came out, still drying her disinfected hands. "Nothing?" I asked, thinking the test was normal and we would have to look for other reasons that Nick's leg was so stiff and painful. "Oh, no", she exclaimed, "there was something". Apparently the catheter leading from the pump to the spinal cord was completely blocked. We had no way of knowing if any medicine at all was reaching its destination of the spinal cord. A course of oral baclofen (the muscle relaxant in the pump) was ordered and we were told to monitor the pain and wait for surgery to replace the pump. This week, Nicholas will have emergency surgery to replace and reposition his pain pump (in a new location in order to prevent a possible repeat failure if the problem related to its position). It's a big surgery and we are all worried. Every time that Nicholas has a big surgery like this, we worry that he will not survive. This is real life.

Tuesday, 9 November 2010


I am stopped in my tracks by Adam Kahane's book, "Power and Love: A Theory and Practice of Social Change" (Berrett-Koehler Publishers, San Francisco, 2010).

Take this for example, "In order to address our toughest challenges, we must indeed connect, but this is not enough; we must also grow. In other words, we must exercise both love (the drive to unity) and power(the drive to self-realization). If we choose either love or power, we will get stuck in re-creating existing realities, or worse. If we want to create new and better realities - at home, at work, in our communities, in the world - we need to learn how to integrate our love and our power."

Monday, 8 November 2010

Health Care Reform Please!

I am a big supporter of our national health care in Canada, but I think it needs reform now. Advances in medicine and technology mean that we are living longer, but not necessarily healthier. A health care system based on the notion of equity for all has come to a point where all Canadians expect the same level of state of the art treatment, often involving years of complex, longterm care. An aging and educated population with a strong sense of entitlement will spell the tipping point for ending our historical love affair with national health care.

In today's Globe and Mail, Andre Picard spells out the grim numbers of our system and its shackles that inhibit reform in his article "Canada, It's Time to Get Our Health Act Together" . Balancing a nation's deeply embedded value of national health as a right with the frustration of growing waiting lists and inefficiency due to diminishing budgets is tricky, but people are starting to talk differently about systemic change.

In my book, "The Four Walls of My Freedom", I point an accusing finger at our nation's obsession with the either/or of public or private health and social care. Picard writes in his Globe article:
"Canadians need to do away with the notion there is black and white choice between public and private. "There is no one-size-fits-all model for funding and there's no one-size-fits-all model for delivery. There is a spectrum," says Jeffrey Turnbull, president of the Canadian Medical Association."

Am I advocating a US style or insurance based system for meeting our national health care needs? No! But, as the mother of a technologically dependent and medically complex son who lives at home, I know that our system in its current form, lacks the flexibility to allow me to contribute to my son's care. No one person or one entity can manage to pay for the care of someone like my son. It takes a village. Now, let's change our policies to allow the village to help.

Wednesday, 3 November 2010

Never Too Old to Belong

In my blog entry yesterday, I talked about the UK innovative housing initiative for vulnerable people called "NAAPS". Well, that organization was in the news again today. Linda Jackson writing for the Guardian, tells the stories of adults with development disabilities who are being moved from residential settings into family homes for the first time. For Stephen Gilbert and Nigel Webb, outings with a family to vintage car rallies, community swimming pools or a cinema are completely novel.

These two gentlemen are now part of the family in the home of Brian and Val Johns in Redruth, Cornwall. They have just begun swimming lessons in preparation for a family holiday to Majorca. The Johns are paid a weekly amount of money for the support that they offer Gilbert and Webb. But the benefits of living in an atmosphere of love and belonging far outweigh the payments made to the Johns (which are similar to those paid to foster parents).

Shared Lives, an agency of NAAPS was even able to place a middle aged rural woman with development disabilities with a farming family in Devon. What makes that story so remarkable, is that the woman refused to be placed without her beloved flock of geese. Now, everyone (including the geese) are happy on one Devon farm.

According to Alex Fox, CEO of NAAPS, the scheme is not widely used because it is poorly understood. Currently, there are just 10,000 Shared Lives carers in the UK. Hopefully, this will change in the future as more people discover the health and wellbeing benefits of living together and caring for one another.

Let's learn from NAAPS and Shared Lives. These programs embody the values that form the template for a caring society AND they save money. It is estimated that developing a Shared Lives project to support 85 people would cost 620,000 pounds, but save 13 million pounds in the long run.

Currently in Canada, residential housing placements (group homes) that receive public funding are oversubscribed with long waiting lists. The cost of private, for profit group homes is prohibitive for anyone, save those with large insurance settlements resulting from catastrophic accidents. Parents who are caring for their son or daughter with a disability for far too long are desperate for choices.

For one possible answer, let's look at NAAPS.

Monday, 1 November 2010

What is Cultural Decision Making?

Everyone, at some point in their lives, has been the victim of administrative decision making that did not meet their needs. In fact, being on the receiving end of administrative decision making can sometimes cause blood pressure to rise and language to turn blue. In my last post, I described the idea of cultural vs administrative decision making.

So, what does cultural decision making in action look like? Here in the UK, are two fine examples. The director of NAAPS, Alex Fox, was a friend when he was Director of Policy at the Princess Royal Trust for Carers, but now he is making even bigger waves as Executive Director of NAAPS. In this year's Queen's Honours list was Sian Lockwood, the Exec. Director of Community Catalysts. Why are they examples to all of excellence in cultural decision making? Read on.

Who are NAAPS and Community Catalysts?

NAAPS has three kinds of member:

  • Shared Lives is where a family is paid a modest amount to include an isolated or under-supported older or disabled person in their family and community life. In many cases an isolated disabled or older person becomes a permanent part of a supportive family. There are around 10,000 SL carers in the UK, of which 3,800 are NAAPS members.
  • Homeshare is small in the UK but significant in other countries. Someone who needs support to continue to live independently in their own home is matched with someone who lacks housing and they trade housing for low-level support. It often works inter-generationally, with matches benefiting a younger and an older person.
  • Thousands of new micro-enterprises and mutuals are establishing new services based on the needs of an individual or small group of older or disabled people. Some are voluntary; others funded through personal budgets or people’s own money. Some of these entrepreneurs are ex front-line workers or disabled and older people themselves.

Micro-enterprises cover a wide range of services. Barbara personally delivers the first two weeks of home support to the older people who use her micro-scale domiciliary care agency, so that she can genuinely understand their needs and match them with the right staff member. With help from her family and her personal budget, Jenny set up DanceSyndrome as an enterprise delivering dance activities to disabled and non-disabled people alike.

Our social enterprise, Community Catalysts, is bringing our values and messages to new audiences, through managing micro-enterprise support agencies for four local authorities (Nottinghamshire, Nottingham City, Dudley, Oldham) and supporting eleven others to set up their own support agency. Other customers include an education trust, MacIntyre, two health boards, a housing association and a prison.

The UK and Canada are heading for cuts to social care. The challenge to policy makers will be to seek models of good practice that at first glance, defy odds by combining forces across sectors and ministries where common objectives can be found. Flexibility with respect to every aspect of planning and execution of public programmes will be necessary and cultural decision making is a must.

Looking at international models of good practice is a good place to start and NAAPS/Community Catalysts is one great model.