"In British Columbia, people with disabilities living in community or institutional care are one of the most over-regulated and poorly served groups. The main reason for this is a long history of overbearing bureaucracy which operates arbitrarily and without effective control and direction from our elected representatives."
Proposal, Civil Rights Now!
CIVIL Rights Now! was founded by Paul Caune, a man who was born with muscular dystrophy.
Now living in Vancouver, he still thinks of North Vancouver as home.
By age 26 his condition had progressed to the point where he needed to use a wheelchair. But it was not until eight years ago when breathing difficulties required him to have a ventilator that his problems with "overbearing bureaucracies" began.
Caune's struggle has been a long and difficult one. You can find the account online at civilrightsnow.ca.
For now, we pick up the story in 2005, when "the Vancouver Coastal Health Authority forced (him) into an institution" where he says he was physically abused and bullied.
What caused the bullying? Was it retaliation because Caune insisted that all he needed for relatively independent living was "a little more assistance to stay in the group home" rather than VCHA's more expensive alternative - the George Pearson Centre?
Because we haven't lived it, we can only imagine the frustration experienced by people who have no option but to use costly government programs that are inappropriate to their need.
Easier to grasp is the impotence we feel as we stand by and watch dysfunctional ministries spend hundreds of millions of dollars on programs that fail many of the most vulnerable families in the province.
Thankfully, some of those in the best position to expose and explain the issues in detail are working to do just that - and to take action to remedy the situation.
Two members of the society's executive are West Vancouver residents David Marley and Jean Lewis who said CRN will launch its Think Twice Campaign from 2: 30 to 4: 30 p.m. this Saturday at the Coal Harbour Community Centre.
"We will introduce our plans for two new pieces of legislation that would dramatically change the way in which services are provided to persons with disabilities," Marley explained.
In CRN's lexicon, the word "disabilities" has few boundaries. The definition ranges from persons with physical limitations who, like Caune, are otherwise capable of directing their own lives, all the way to those diagnosed with mild to severe cognitive impairment.
A list of individuals who might need some form of community assistance - with education, health care or many other social service interventions - would fill this column.
There are children and youth with dyslexia for whom early assessment and appropriate teaching methods are essential to the quality of their future life skills.
There are those who, diagnosed with autism, may need ever-evolving assistance for a lifetime.
And, as demographers and medical professionals have alerted us for years now, society needs to prepare for a burgeoning population of seniors, many of whom will lose their independence from a variety of conditions - most importantly from Alzheimer's disease or other forms of dementia.
Lewis and her husband Michael, a West Vancouver councillor, are parents of an autistic son. They know first-hand the barriers faced by disabled persons and their caregivers as they advocate for access to appropriate services.
"It is people in need of the services and their families or caregivers, not bureaucracies, who know what specific interventions work best for them," Lewis told me.
It was just that level of frustration that, a few nights earlier, had led a parent to contact me to ask why her family has been driven to seek expensive alternatives for their dyslexic child, when the government grants the school district around $20,000 a year per child for special education.
While more of that story is yet to come, the legislation CRN proposes offers hope for positive change.
Saying it would "introduce an element of market discipline to the provision of services," the first part of the two-pronged proposal would see a Community Care Direct Payments Act.
Marley explained that, following certification, funding under the Direct Payment Act would be sent from the Ministry of Finance directly to the individual or to the approved caregiver.
In practice, if we look at the story above, that $20,000 would be paid directly to a parent or authenticated recipient to fund targeted education outside the parameters of the regular school curriculum.
For other programs, CRN acknowledges the existence of the Ministry of Health Choices in Supported Independent Living initiative but says, "Since 1998 when (service) delivery was made the responsibility of unaccountable regional health authorities, the program seems to have been undermined."
The second prong is what CRN calls The Civil Rights of Persons in Community Care Act.
Administered by the Attorney General of B.C. the legislation would "enable investigations and possible civil action resulting from a breach of charter or other rights of disabled persons by government. . . ."
Needless to say, these proposals are in their infancy. Not only might they trigger a torrent of questions and amendments along the way, they are likely to meet with determined resistance from politico-bureaucratic interests that have been entrenched for decades.
From where I sit, with a physician-nephew in England who has been charged with revamping the health-care system in some of the Channel Islands, I know Caune, Marley and Lewis have many hills to climb. With their dedication, energy and intimate knowledge of what needs to be done - and with our help - they might just succeed. It's a job worth doing and many years overdue.
To register for Saturday's event, RSVP at: civilrightsnow.ca.
