A History of Cooinda

Index for this page

Beginnings   Growth   Funding Problems   The first Family Camp   The Siblings Group  
The Respite Cottage   Internal problems  

Written as part of The Capability Dialogues project by Thea Calzoni

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Beginnings

In 1976, five women with children with a disability began a playgroup, first at the home of a relative of one of the mothers, then at Springdale Heights Neighbourhood Centre in Albury. In those days families had to travel to Sydney to get things like Occupational Therapy, Physiotherapy and Speech Pathology so as parents of children with special needs the women started this playgroup to provide a suitable play program for their children while they pushed for local delivery of necessary services.

In 1976 the group was formally established as Cooinda Playgroup for Special Children, the Aboriginal word Cooinda having the local meaning of ‘a happy place’. When these mothers employed Sue Pringle to work with their children at playgroup, Cooinda began to grow. Sue was a community nurse with experience in psyciatric and mental retardation nursing. Elvie Lee, who came to the group in 1978 with, Kam, her three year old son, remembers that her husband was one of the Cooinda Committee members who interviewed Sue for the job. The word was that “Sue had a very quiet and calm manner and she was well qualified for the job.” Elvie joined the Committee and became active in fundraising actitivities to purchase toys and equipment. Twenty-five years later she speaks of the value of her connection with Cooinda: “The Playgroup was invaluable to Kam, assisting in his development, and the understanding and friendship of the other parents and siblings remains with me to this day”.

In 1978 the playgroup found a new base at the newly built Woodstock Centre in Albury, a provider of services (including residential support services for children and adults with intellectual disabilities) that had only just been established. NSW government funding was obtained under the auspice of the Woodstock Centre.

When the energy of this community of parents supporting each other with their children’s special needs was combined with Sue Pringle’s dynamic passion for community development, a new educational and social network developed for people with a disability and their families and carers in the Albury/Wodonga region. More than twenty years later, it was found by the Human Rights and Equal Opportunity Commission National Enqiry into Rural and Remote Eduation, May 2000, that Cooinda Family Support Group “plays a crucial role in information sharing, emotional support and helping parents support their child.”

Andrea Temple remembers attending the early playgroups with her baby Allanah at the Woodstock Centre in 1985.

“Most of us had been to conventional playgroups but we had one way or another been made to feel unwelcome with our children with disabilities. This group enriched our lives with Sue Pringle’s guidance, encouragement and knowledge. She supported us by managing activities with the children with the assistance of Joy Tonkin (a volunteer helper) and chatting with us, encouraging us to share experiences and helping us to find information and resources.”

Insitutionalised for many years with an intellectual disability, Joy had succeeded in achieving independence in her thirties, renting her own unit and participating in society as a volunteer. Not only was her presence an inspiration to mothers of children with intellectual disabilities but she was also valued for the quality of her assistance with the playgroup. Joy was greatly appreciated as the first of many volunteers to become part of the Cooinda community.

Andrea recalls that some of the parents in the Cooinda playgroup became members of the Friends of Woodstock Auxillary, a fundraising arm of Woodstock. Fundraising, particularly for funds to extend Cooinda’s capacity to assist families, became a key aspect of Cooinda’s community development process where individuals getting involved with Cooinda find new skills and capacities in themselves as individuals working as a team to support Cooinda.

“A cake-stall may seem like a pretty straight forward type of activity”, says Andrea, “but to be really successful and raise a significant amount of money, a lot of planning and organisation needs to go into it. People developed skills they didn’t know they had and you could feel the self esteem growing in us all.”

Andrea had energy, generosity and a determination to contribute to the development of a community support for her daughter and others in a similar position. Her talents did not go unnoticed. Within a week of arriving in the Albury/Wodonga region and attending her first Cooinda playgroup, Andrea was elected President of the Cooinda Management Committee at their Annual General Meeting.

“The committee meetings were something special”, says Andrea. “For a start, they were held in people’s homes, where the reality of life with kids with disabilities was undeniable. Secondly, they were more than just meetings. They were places of support, support of the group for an individual with a particular problem or going through a hard time and support by individuals of one another. The business of the meeting got done, but amongst a lot of discussion about how to deal with particular issues that crop up in the lives of people with a family member with a disability. There was a lot of chatting and more often than not, some tears, but a lot of ground was covered, information was shared, problems were shared and we bonded and grew stronger together.

“These days meetings are held in a workplace rather than a home and we have education or medical professionals and service provider representatives on our board as well as parents. But the principle is still the same. It is still about support first. This is quite an eye-opener to the professionals but they see the value in it. It’s good for them too to get a sense of the reality of the lives of people living with disability.”

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Growth

As the Cooinda community grew, so too did their needs for funding. It got to the stage where all their fundraising efforts were still not enough to supplement the $2,000 (approximately) a year they received from the New South Wales government to a level to meet the growing demand by families in both Wodonga and Albury for Cooinda’s unique blend of child and family services. In 1991, the opportunity for recurrent funding came from the Victorian government, with the proviso that Cooinda have a base in Victoria. This began a new chapter in the life of Cooinda. Cooinda began a Parent Support Group in Wodonga and soon this was officially linked to the Victorian Hume Region network of Parent Support Groups. Cooinda was able to operate out of Woodstock in Albury as well as the Continuing Education Centre in Wodonga holding playgroups and parent support group meetings, delivering a Cerebral Palsy Point Percussion Therapy Seminar and a Down Syndrome Conference and a Couples’ Forum and participating in the production of a parent self-help manual by the Hume Region Combined Parent Support Groups.

Tom Keating, Hume Regional Director of the Department of Human Services, recalls that

“Cooinda, like a few other pioneering parent networks developing in the region in that period, was at the forefront of parent support with respect to children with developmental delay or disabilities. Cooinda had a strong grass roots basis and was a staunch advocate for families. There had been a tendency for disability funding to be controlled by government agencies and institutional organisations. Cooinda expressed an alternative voice for carers to manage their own programs.”

Not everyone was happy with Cooinda’s expansion. Certain members of the Friends of the Woodstock Auxillary took the view that Cooinda should stick to being a playgroup and not “empire build”. Border rivalries may also have come into play. Some discontent brewed over time, eventually to manifest in the late 1990s in political conßict in Cooinda Committee of Management meetings and the promotion of a negative perception of aspects of Cooinda’s dealings by those who were not happy with Cooinda’s growing achievements.

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Resolving Funding Difficulties

Problems began in 1993 when it became increasingly difficult to operate in Albury, partly due to some tensions in the relationship of Cooinda to Woodstock, but mainly because of new restraints imposed in NSW funding arrangements whereby Victorian families were no longer eligible to partake of Early Childhood Intervention services provided by Albury services, including the Woodstock centre. It was no longer feasible for Cooinda, which provided a service to both Victorian and NSW families, to be auspiced by the Woodstock Centre.

A new auspice organisation was found in the Disabled Persons Regional Council, based in Wodonga. In 1994, a new service was developed, Cooinda Education and Play, an Early Childhood Intervention Program. In 1995 Cooinda gained Commonwealth funding for this program which was established temporarily at Belvoir Special School. In 1996, they obtained partial funding for the development of a purpose built Early Intervention Centre. A group of parents began in earnest to raise funds for this project which was eventually established in its own right as the Learning Education and Play (LEAP) Centre.

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The first Family Camp

1996 was a significant year for Cooinda. Their 20th Anniversary was celebrated in a big event - a Family Camp at Lake Hume Resort. Funded by the Victorian Department of Human Services Home and Community Care Program and community donations, the Camp was a huge organisational task for Cooinda’s Coordinator and the Committee of Management, involving the collaboration of educational, medical, welfare and business organisations in the Albury/Wodonga region and the volunteer efforts of numerous Cooinda parents and friends. It was a tremendous achievement and a resounding success, so much so that it became an annual event, except in the year 2000 when the brewing internal political turmoil in Cooinda was to come to a head.

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New premises, incorporation and starting the Siblings Group

In 1996 Cooinda changed its official shape and name from Cooinda Playgroup for Special Children to Cooinda Family Support Group Incorporated and the following year moved to its own premises in 150 Lawrence Street, Wodonga together with Limbkids, a support group for families of children with limb-loss. 1996 was also the year when Sue Pringle discovered the need for a social activity program for the siblings of children with disabilities. While Sue was meeting with a mother of a boy with a physical disability, the child’s sister sat quietly drawing. After the family had left, Sue noticed the child’s drawing sticky-taped to her wall. It depicted a girl being drawn up into the sky by helium balloons. The balloons were rising towards a glorious sun surrounded by clouds. They were drawing the girl away from an empty wheelchair on the ground. There was no sign of a boy in the wheelchair. The child being drawn away was the sibling.

Click the image for a larger view

The drawing by 11-year-old Sjaan Gouma which became
the inspiration for establishing the Sibling Support Program

She telephoned the girl and her mother and had a lengthy conversation about the picture and the girl’s mixed feelings about being the sibling of a child with a disability. The sibling support program that began with this discussion developed into a volunteer supported camp specifically for siblings of children with disabilities. Recurrent funding was obtained for the program to be run in conjunction with Upper Murray Family Care. Today it consists of a professionally staffed three day a week after-school program with occasional bus trips and camps held throughout the year.

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Respite Cottage

In 1999 Cooinda entered into another partnership, this time with the Carers Respite and Information Service to trial a respite cottage for parents and carers at the Lake Hume Resort. On the basis of demand for this venture, Cooinda went on to negotiate the permanent use of a unit at Bright for respite for Cooinda parents and carers. Cooinda handles bookings for the cottage and families make use of it throughout the year.

Throughout its history Cooinda has demonstrated a willingness to engage in partnership with other organisations to develop comprehensive support for its expanding membership of families in Albury, Wodonga and the surrounding districts. While it has stayed true to its foundation as a self-help organisation, the representation of its popular base has expanded along with the range of services provided. In the words of Andrea Temple:

“The basic requirement to become a member of Cooinda is to have a child with a disability in your family. This does not mean that other members of the family are overlooked as Cooinda’s focus is on caring for the whole of the family, not just on specific family members. Grandparents, aunts, uncles and friends are encouraged to become involved in the seminars, workshops, lobbying, social and fundraising activities of the group. This involvement provides an opportunity for participants to meet other children with a disability and their families, thereby assisting extended family and friends to achieve greater acceptance of the disability affecting the child they care for.

“Families involved with Cooinda come from varied socio-economic backgrounds. A large percentage of our families experience financial, physical or emotional stress related to the care of their child with a disability. Cooinda helps to relieve some of these stresses by offering support and practical assistance in problem solving, accessing services, information exchange, crisis support, alternative therapies, respite care, parenting skills, transport assistance and advocacy and out-reach to those who are rurally isolated.

“Being able to meet and talk to others in a similar situation who can have a real understanding of that experience can be of greater benefit than talking with a professional who may not have the same understanding of the situation. Parents often feel that professionals are only looking at the clinical picture and sometimes forget about the rest of the situation that exists. Quite often, a WHAT WORKED FOR ME approach from another parent is all that is needed. Even though the child’s disability may be different within different families, just knowing that another family got over a big hurdle/crisis situation like the one your family is facing can be of great comfort. By having access to a self-help group, parents can also gain information from Cooinda’s networking with other agencies.”

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Internal problems

In the year 2000, Cooinda’s networking with other agencies was jeopardised by a group of disgruntled members making official complaints to the Department of Human Services about the way in which Cooinda conducted its affairs. Cooinda has always operated in an informal family-friendly way and aspects of this laid them open to criticism. For instance, there was a practice that if a Cooinda child was in hospital, one of the Cooinda committee members or volunteers could access petty cash or claim reimbursement for the purchase of a gift for that child. The same went for purchasing an item of comfort for a parent tending to a sick child in hospital away in Melbourne. It was a standard Cooinda practice to use funds, much of which had been obtained by Cooinda community fundraising, for the emotional support of members in this way. It was a practice, however, which was open to malicious misinterpretation.

The Department of Human Services paid for a consultant to review Cooinda. The review found that Cooinda had internal conßict and was operating on a deficit and recommended that Cooinda Family Support Group be defunded and its services taken over by the Department. Families rallied together to speak up in favour of Cooinda and save the organisation from being defunded. After many interviews with Cooinda members and a thorough investigation of its financial records, the Department cleared Cooinda of any wrongdoing. Around about this time, the Human Rights and Equal Opportunity Commission was in Wodonga conducting its enquiry into rural and remote education. Its resoundingly positive report on the role of Cooinda in supporting community health for families of children with a disability clearly allayed any lingering doubts about Cooinda that may have existed in the minds of managers of key funding bodies. Cooinda, with Sue Pringle at the helm, overcame this campaign to undermine Cooinda by a lot of extra work attending meetings with funding bodies and laying open the records of the organisation to official scrutiny while continuing to deliver the same support and programs with the same quality of service to all members, regardless of whether or not they belonged to the disaffected faction.

Not all of the Cooinda community shared Sue’s forgiving attitude, but it was never challenged, even when those who had spoken out against Cooinda attended the 2001 Family Camp. Sue strategically arranged for these people to be buddied up with new Cooinda families who were not privy to the details of who had been involved in the recent political goings on. The strategy worked and the fun and friendship activities of the camp ameliorated any latent hostile feelings. By firmly facing the allegations of the critics, yet refusing to bear any grudge against them, Cooinda modeled an utterly non-judgmental attitude, maintained the integrity of its service and strengthened its support base.

Sue Pringle developed some health problems that many attribute to the stress of the period of discord but she has not yet found the opportunity to lessen her activities on behalf of the organisation. Her intense commitment and leadership inspires other staff and volunteers to follow suit.

For example, recently Cooinda was contacted about a mother who was suicidal and unable to access any other service, including mental health services. Ann, the Cooinda administrator, stayed with the woman at Cooinda until Sue was available to organise childcare, contact relatives and safely transport the woman for admittance to the local hospital with her consent. Other families volunteered to provide meals for the woman’s family.

Sue has fostered an intense quality of community support in Cooinda such that when a young mother, Sally-Ann, who was to have attended the 2002 family camp died on the day the camp was to commence, the immediate and extended family of the deceased were comforted and cared for by Cooinda. On that day, while somehow organising the business of setting up the camp, Sue and her team spent time counselling Sally-Ann’s children, mother and sister who, together with their children with special needs, were all booked into the camp. None of the three families wanted to cancel their attendance at the camp. Annette Crichton, Sally-Ann’s mother explains

“We took the decision to carry on and go to the camp because we wanted to do what was best for the kids. So we went and I’ve got to admit everybody there was really fabulous. They supported us and they all helped out so much with the boys. We got a little peace. A quite time to mourn our Sally-Ann.”

So they were able to grieve in a safe and nurturing environment in the company of up to three hundred people at the Cooinda Family Camp, only some of whom had known Sally-Ann but all of whom knew about the need for support for families suffering loss.

There are many more stories of the Cooinda community’s tremendous capacity for ßexible family support. Some, recorded at the 2003 Cooinda Family Camp, are contained in Capability Dialogues, the Cooinda book about how families have developed the capability to face the problems of disability.

This is the year (2003) in which Cooinda will utilise a sizeable recurrent grant awarded to them last year by the NSW government. The funding is to continue and expand their family support activities in NSW.

Twenty five years after setting up in NSW and nine years after losing NSW funding and its Albury base, Cooinda is once again officially back in the region.

Andrea says “At last there is some reward for the generosity of Cooinda, whose staff and volunteers have been stretched to the limit to provide service to all comers, regardless of which side of the border they came from. Some changes will undoubtably come with the new staff we can employ with this funding, and Sue will finally be able to take a break, but the organisation will always remain family focused. The ßexibility and capacity to meet the needs of a family in crisis is part and parcel of the Cooinda ethos. So too is the role for families in leading the organisation into new areas of support. Volunteers will always be welcome, supported and have the opportunity to develop skills. There will always be too much to do and not enough time to do it in. That’s life. That’s Cooinda. It’s chaotic at times, but it works.”

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