The Cerebral Palsy Association of BC – A History & Manifesto
During the first half of the 20th Century, infant mortality rates in North America plunged. That wasn’t the end of the story. The natural converse was an increase in the survival rate of infants born with significant disabilities, in particular cerebral palsy. By the early 1950s, there were approximately 400 children with cerebral palsy in the province and 80 new cases were being reported each year.
Several regional groups and local clinics were formed throughout British Columbia to deal with the needs of these disabled children.
Over three days in May of 1953, 75 delegates from the medical profession and several regional societies, dedicated to assisting children with cerebral palsy, convened in Vancouver. It was felt that the interests of those with CP could be advocated best by a single provincial voice, rather than on a regional, disparate basis.
Lobbying for health grants from both the provincial and federal governments and effective fundraising from the private sector required a coordinated approach. Consolidation of effort toward the development of rehabilitation programs was called for. As well, there was a need for the community of those whose lives were affected by cerebral palsy to come together to share experiences, knowledge and fellowship.
It was well understood that one person alone, regardless of circumstances, faces life with a measure of difficulty. For a person with cerebral palsy, the additional challenges of life made essential the building of a specific cerebral palsy community. This was to be the Cerebral Palsy Association of BC.
In the succeeding years, the CPABC grew significantly. Successful lobbying efforts saw revenue from government through annually growth. This funding sustained a core of paid staff that organized volunteers for fundraising. In turn, the private business sector and individuals were canvassed for additional financial contributions.
In addition to organizing fundraising campaigns, the central provincial office of the CPABC provided advocacy, administered child development centers around the province, supported professional advisory groups from the medical community, and raised public awareness.
The informal, but no less important, role for the CPABC was to provide a hub for the community of those whose lives were affected by CP. It was well understood that individuals with CP and their families were best able to see the achievement of each person’s potential by networking, collaboration, and support from other members of the CP community.
CPABC reached its financial peak in 1982. In that year, it recorded revenue from all sources in the sum of $1,563,126. The lion’s share of that revenue went to the support of child development centers throughout the province. At that juncture, there remained major functions which the association had yet to perform. Specifically, the community of adults with cerebral palsy had grown and required a voice. Continuation of community through adulthood meant that vocational inclusion, outreach, transportation, housing, and personal security issues were all on the table and needed attention.
As the demographics of the cerebral palsy population began to change, it is unfortunate that the provincial government chose this time to fund individual child development centers directly. The rug was pulled out in 1983. CPABC’s revenue suddenly dropped to $76,653 that year.
As a provincial organization, CPABC continued to have financial commitments to its landlord, staff, non-development centre programs and the likes. The dramatic cut in funding set off a downward spiral in the organization as it endeavored to shed commitments to maintain viability. The maxim “it takes money to make money” applies to charitable fundraising as it does with any other endeavor. While in survival mode, nothing was available to invest in fundraising. In turn, revenue continued to shrink. By 1989, the annual revenue had dwindled to just $43,372.
A major bequest kept the CPABC alive through the 1990s, however, the CPABC dwindled down to a skeletal staff and a small core of dedicated volunteers who doubled their efforts as members of the board of directors. The community was dispersed into regional groups with child development centers as their focal points. The involvement of the medical community serving on advisory committees followed a similar path.
At the Annual General Meeting held on September 22, 2003, the CPABC was in its 50th year. To maintain viability, its staff had been cut to a single full time office manager and a part time support worker. Office equipment contracts were cancelled. Photocopy and computer access was shared with other groups. Teleconferencing of board meetings was eliminated. The association operated out of shared premises subject to flooding and without wheelchair accessible washroom facilities. The CPABC had lurched from crisis to crisis for several years and the future held no prospect for improvement.
Largely due to the stubbornness of a handful of volunteers and the remaining staff members, the CPABC carried on. The argument there was nowhere to go but up carried the day. The next five years saw fortunes improve with the success of the clothing donation program, some donations by service groups and individuals, and bequests. In 2006, the CPABC moved to its current premises. The staff grew to include 3 full time positions including its information officer. By 2008, annual revenue had grown to over $200,000 and the CPABC became a chapter of the United Cerebral Palsy.
The Cerebral Palsy Association of British Columbia is poised to return to a significant position within the disability community in BC. It provides outreach, bursaries, community education, knowledge and referral services throughout the province. Although its current service level is modest, with help it will grow its programs and add others. Much needed are programs for vocational, transportation, personal security, housing, transition to adulthood, social inclusion and advocacy.
Not the least of the roles of today’s CPABC is the development of community. The growth of the association will attract those affected by cerebral palsy and their families. Caregivers, educators, civic officials, medical professionals, and other interested individuals will also see the value of affiliating with this dynamic community.
Membership in the Cerebral Palsy Association of BC provides opportunities for networking, education, and personal development that shouldn’t be missed. The next 50 years for the Cerebral Palsy Association of BC will be without limits.
Written by Donald Renaud, Former CPABC Board Member