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Thread: Predicting Trends for 2012: Watching out for our kids!

  1. #1
    Distinguished Community Member
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    Default Predicting Trends for 2012: Watching out for our kids!

    This is my latest post on my blog about what to look out for in 2012 - my worries and my tactics.

    Read about my family and others' here on braintalk!
    A New Year's Reflection for Al Etmanski
    Al Etmanski is Canada's godfather of social finance, social enterprise and innovation, especially in the realm of social care. As if he doesn't do enough for our country every day, each year at about this time, Al asks a number of his colleagues to reflect on a question. Last year, we all wrote about a trend or phenomenon we would like to see made more visible in 2011. This year, Al usurped a metaphor from Wayne Gretzky, our national ice hockey hero (who could always predict where the puck would be on the ice) and asked, "This year, what are you skating towards?" Here is my offering. I encourage everyone to subscribe to Al's blog and to read the full complement of responses to Al's question for 2012. They will be available to read early in the New Year.

    What are you skating towards? Frankly, I have no idea. I am careening and I can’t quite see where the winds of change are taking me. Within the last four months, we have moved our family across the world, my husband retired from the diplomatic corps after thirty-seven years, and we helped our adult son relocate from the family home into a residence with nursing care. In my book and my blogs, I write about disability, care in the community and our aging population. Lucky that I have such rich material within my own four walls!

    During the past few months, I described to a friend how I felt about the onslaught of change in my life - “it’s as if someone has removed all the floorboards from my house”, I said. “It’s like I am walking on just the narrow joists and all the time, I worry about falling”.

    I know that others will write here about skating towards positive change, and I will be inspired. But I would like to talk about ‘defense’ and not ‘offense’, to use another hockey metaphor. A great defensive player also knows where the puck will be in order to stop a goal by the opposing team.

    Over the last year, I have observed a pernicious trend, and in 2012, I will be skating defensively toward it. Thanks to information technology, I have many friends all over the world who are also parents of children with disabilities. One family, from Australia, I have known ‘virtually’ for many years - their son has developmental disabilities, is medically complex and has managed to survive over 77 hospitalizations in his 23 years of life. This year, the professional advisory committee at their hospital took a unilateral decision that there would be no more ICU hospitalizations or resuscitation measures because these would ‘not be in the best interest of the patient’ and furthermore, they would be ‘futile’. It was my guess that a meeting of hospital administrators had taken place that basically placed a cap on the public funds that one individual could or should consume in a lifetime - especially if that individual had development disabilities. This is a story that I am hearing more and more from families the world over.

    In November of this year, Louise Kinross, the editor of “Bloom”, the Holland Bloorview family magazine, attended a conference on medical ethics and disability at McGill. She reported that one neonatologist commented “There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.” But also described at the McGill seminar was “The Disability Paradox” - that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

    The elderly, especially those with dementia, are also in a risky situation. In the absence of a strong and vocal personal support network, those who are vulnerable and voiceless risk becoming expendable, especially in a climate of austerity. And I believe that negative attitudes toward those who are not employed or employable are growing.

    The worth of giving and receiving care is my ‘defensive’ strategy. I believe that in Canada, we urgently need a public conversation about a national ethic of care. We need to pick apart the human value of those individuals with care needs and who will pay for their wellbeing. The moral, political and financial responsibilities of care must be delineated for the individual, the family and all levels of government. We must nurture and enable innovation and sustainable business models to operate in this sphere and we must do it now.

    My hair is white and my son requires 24 hour nursing care. My mother turns 90 this year. Scratch the surface of Canadian society - my family is not that unusual. Careening toward the future is not a good way to score goals and win the game OR make public policy. We need an honest and public appraisal of our strengths and capabilities in the arena.

    In my family, we rate our life as excellent. I want to make sure that we keep it that way, so in 2012 I'll be keeping my eye on the puck and designing my next defensive strategy.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog:

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Beautifully stated, as always.

    Denial of care and services to our most vulnerable citizens is happening in the United States already. State budgets are in the toilet, and the first place legislators look for cuts is social services.

    There is no logic to it economically. What happens to individuals, elderly and/or disabled, if they can no longer live in their own homes with careprovider assistance? They end up in nursing facilities, which cost taxpayers 5 times as much as in home services. What happens to individuals, who do not receive appropriate and timely medical care? They die, or they get worse, with multiple problems, requiring hospitalization, which is far more expensive than home health care.

    People with extreme care needs are devalued in our society. They are seen as worthless drains on our system, because they aren't taxpayers. They are poor, unable to work, even if employment opportunities existed for them, and they need public assistance.

    And, there are many people in our society, who do not want their tax dollars to pay for that assistance. I have read so many comments to news stories about budget cuts for elderly and disabled persons, which echo the sentiment from the 1950's: families should sacrifice everything to care for a loved one, who is ill or elderly. In 2011, unless you are a member of the 1% and independently wealthy, that is impossible.

    For example, it's impossible for me to work outside of our home AND provide Jon with the level of care he requires. Jim and I sleep in shifts to provide Jon with 24 hour care, so he can't work outside of the home either. If we didn't receive assistance from the government, how would we care for Jon, support him and ourselves, keep a roof over our heads, and food in the cupboards? We are paid as his careproviders, instead of strangers in a facility. We do the work of a staff of 10 people. Imagine the savings. Yet, Jon's programs are always on the chopping block at budget time.

    As a senior citizen not yet eligible for Medicare, I fear that when I am ready in a couple of years, it will be worthless to me, because it is constantly being attacked by our federal legislators. And Social Security. I paid into these programs, but there may be nothing there for me.

    How we treat those among us with the greatest needs is a reflection of who we are as a society.

    And when people resent their tax dollars providing me and Jim with an income so that we can care for our son at home, instead of him being placed in a desolate nursing facility (because that is all that is available here), then I know that we have a HUGE Systemic problem. And when nursing homes can abuse patients and violate their rights, then tap the government for a loan to pay their legal costs to combat complaints against them, I know that we have a serious problem that will not be resolved easily.

    Until we can change the attitudes of people towards persons with disabling conditions, the trend toward denying them what they need will burgeon. In today's economy, when so many have so little, the idea of giving more to others, who have less, is unappealing to the majority.

    In my 42 years of battling these issues, I have seen little strides in ensuring the civil rights of persons with disabilities. We have laws, but they are not enforced. I expected so much more by now, and frankly, I think we've taken many steps backward. It's tragic, a word, which I never use capriciously.

    Of course, we must never give up, and we must wage every battle with the knowledge that we are absolutely right in our quest.

    At this place in your life with Nicholas, you should not feel fear or trepidation about the future. You should feel confident that Nick will receive the best care and attention possible, which is his right as a human being. You shouldn't have to worry about how balancing governmental budgets will affect his care. You shouldn't have to be convincing anyone of Nick's value, or his right to live.

    Those who hold power over us forget that we are not statistics, we are people.

    I pray for positive change. And for the day, when delicate life balancing issues are not considered a game by those who hold the purse strings.

    Fight on, my friend!

    Love & Light,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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