SpineCare Foundation came into being as The Children’s Spinal Research Foundation in 1981 for the simple reason there was a need for a source of funds in New South Wales to specifically support research into diseases and disorders of the spine in children, there being no such body at that time. In short, it was to take a much-needed role in fostering research in those conditions which are the principal causes of physical handicap and activity limitation in the young.
In Australia the Federal Government is the principal source of funding for medical research through the National Health and Medical Research Council. The Council has never had a policy of allocating funds for specific areas of medical research. Proposals for research in spinal disease compete with those in cancer, heart disease, diabetes and so on for the limited funds available on an international scale. The competition for the research dollar in this country is ever-fierce.
The Foundation took an innovative approach to supporting research namely, one on a contractual basis. In this approach a problem is identified and an established researcher of national and international standing is provided with funding to pursue a particular objective or to answer a specific question of clear relevance. The contributions which have been made are listed separately with some explanatory notes.
In the mid-80s there was an alarming number of acute spinal cord injuries (ASCI) in children and adolescents from the football codes and motor vehicle accidents. It soon became apparent that the public hospital system in New South Wales did not have the resources and personnel to effectively manage the long-term rehabilitation of these unfortunate patients and their families. This was particularly true for those who became ventilator-dependent. Something purposeful had to be done. To this end Drs Carolyn West and Stephen O’Flaherty together with Professor Thomas Taylor from The Children’s Hospital, Camperdown, successfully approached the Motor Accidents Authority of New South Wales (MAA) to fund a therapy-oriented team to look after patients in their homes after discharge from the acute hospitals. The team consisted of a nurse, a physiotherapist, an occupational therapist and a social worker. This quickly proved to be a very successful venture.
In the early 90s it also became evident that there was a pressing need for transitional accommodation for the families of children and adolescents recovering from ASCI. This led to the concept of SpineCare Village. Fundraising commenced and with substantial support from the MAA, Dymocks Booksellers, Zurich Insurance, the St George Foundation and the Primary Club. The Village opened in 1996 on land leased from The Royal Rehabilitation Centre, Ryde. This state-of-the-art facility was built specifically for wheelchair-users and was designed by the distinguished architect Mr Ken Woolley.
Towards the end of the 90s there was a major change in federal and state funding for rehabilitation generally throughout the country. Gradually the inpatient model was changed to the outpatient model. As a cost-driven move, the change was irreversible. This placed The Foundation in an advantageous position to further develop the outreach service.
The funding of the Outreach Team by the MAA continued for six years but by its charter it could not continue to do so. The importance of the service was finally recognised by the New South Wales Government in 2002 when recurrent funding for the Team was made available. This was a significant milestone in the affairs of The Foundation.
It is important for Spinecare to focus on the kids as well. We plan on taking kids with needs out on trips they will remember for a lifetime. Our next trip is planned to take kids to the calgary zoo in canada. A trip they will be sure to remember for a long time. We hope it brings hope to those with less.
The funding proposal to government was made in conjunction with Northcott for a practical reason. The original team was therapy orientated and it was a logical move to combine it with the extensive ancillary resources of Northcott – wheelchair maintenance, seating clinics, provision of equipment, orthotics, computer assisted technology etc. Thus the Team became the New South Wales Paediatric Spinal Outreach Service. This now offers a truly comprehensive service throughout New South Wales. In 2002 The Foundation merged with Northcott of which it is now a Division.
The firm establishment of the outpatient model for rehabilitation in New South Wales left a question mark over the future of the Village. After careful consideration and lengthy negotiations The Royal Rehabilitation Centre bought back the lease for the land on which the Village stands. This was executed in a most satisfactory way and the terms of the settlement provide a substantial future income stream for The Foundation. Hence, the efforts and generosity of those who worked so hard to make the Village a reality will not be lost.
Now, after a few difficult years, the future of The Foundation is a bright one. Our logo signals our objectives, what one might call a mission statement – Research, Education, Advocacy and Support for children and adolescents with spinal disease and disorder. The Foundation belongs to the people of New South Wales.