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operate?
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House?
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Very Special Kids House to die?
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What is Very Special Kids?
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Very Special Kids is a unique organisation that supports families throughout their experience of caring for children with life-threatening illnesses, from diagnosis through to recovery or bereavement. The services are offered free and without obligation by a team of professional family support workers and hospice carers, who have backgrounds in social work, psychology, family therapy and nursing. These staff are supported by more than 200 trained family volunteers and hospice volunteers. The organisation operates Very Special Kids House, Australia’s first hospice for children, providing respite and end-of-life care.
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Who started it?
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In 1984 two families who were going through the trauma of their children dying came together to support each other in their time of need. At the time, there was little support available for families who had children with life-threatening illnesses. The families decided that no one should feel as alone and isolated as they did and that support was needed to help them through the ordeal of caring for seriously ill children. The organisation was established in 1985.
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What is the nature of the support that Very Special Kids provides?
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Very Special Kids support is a total approach to care that embraces the physical, emotional, social and spiritual needs of the family from the point of their child's diagnosis through to recovery or bereavement. Very Special Kids provides a range of physical, emotional, social and spiritual support, which is offered:
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- to all Victorian families of children with life-threatening illnesses
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- with specialist staff and more than 200 trained Family Support Volunteers
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- with the engagement of the community
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How many families is Very Special Kids helping?
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Very Special Kids is currently supporting more than 800 families across Victoria. This number has been increasing each year by 10 – 15 percent.
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Where is Very Special Kids located?
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The offices and Very Special Kids House are located at 321 Glenferrie Road in Malvern. This site is leased from the Victorian Government. In late 2002 and early 2003 Very Special Kids opened a number of new offices across Melbourne and Victoria to make services more accessible to families, and the organisation now has offices throughout Victoria, including Brunswick (covering the northern and western suburbs), Torquay, Traralgon, Shepparton, Frankston, and Ballarat.
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What does the term ‘life-threatening illness’ mean?
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These are serious illnesses that gradually (or in some cases, not so gradually) worsen. Life-threatening illnesses take many forms but they are always devastating for the families. They include (but are not limited to): muscular dystrophy, genetic disorders, spinal muscular atrophy, rare syndromes, degenerative neurological conditions, congenital cardiac anomalies, cancer and leukaemia. Approximately 60 percent of the children that we support have high medical needs, with genetic and neurodegenerative conditions, and 25 percent have cancer. The remaining children have a variety of conditions.
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Are the children who come to Very Special Kids at a critical stage of the illness?
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Some are, but others have been part of Very Special Kids for years. Many of the families we support have a child whose condition will gradually deteriorate over a long period of time, requiring a high level of ongoing care for many years, which places increasing strain on families.
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How do people come to Very Special Kids?
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Very Special Kids can be contacted directly by telephone on 03 9804 6222 or 1800 888 875 by any family in Victoria who has a child with a life-threatening illness and needs help. Families are also referred through the Royal Children’s Hospital, the Monash Medical Centre, the Victorian Paediatric Palliative Care Program (a partnership between Very Special Kids, the Royal Children’s Hospital and the Monash Medical Centre), community health providers and numerous other support organisations.
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How is Very Special Kids funded?
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The total operating cost of the organisation is $4 million. Very Special Kids receives 20% of this from the government and must fundraise the remainder.
The children’s hospice, Very Special Kids House which recieves very little funding from the government. Each year, Very Special Kids must raise $1.3 million in donations to keep this important facility running.
Very Special Kids values the support of the Department of Human Services of the Victorian Government, which currently funds 60 percent of the Family Support Services. We rely on donations for the remaining $500,000 cost of these services.
We are proud of the support that we continue to receive from Tattersall’s Group and the George Adams Foundation. Initial funding from the Estate was received in 1994 to build the hospice and refurbish our site, which is now called the Tattersall’s Very Special Kids Centre. Currently, as the Principal Sponsor of the Piggy Bank Appeal, Tattersall’s funds the costs of the Appeal. Very Special Kids values the fantastic support from the owners and staff of Tattersall’s Venues and Tatts Pokies Outlets during the Piggy Bank Appeal.
Very Special Kids also enjoys the generous support of many other businesses and their staff. For more information, please visit the corporate supporters section of this web site.
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What other support has the Government given Very Special Kids?
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During 1994, which was the International Year of the Family, the Victorian Government leased to Very Special Kids the property at 321 Glenferrie Road, Malvern, in recognition of the unique needs of families who have children with life-threatening illnesses. Very Special Kids is very grateful for that gesture and is delighted that families can enjoy the beautiful surroundings.
The lease is for 21 years with an extension of a further 10 years as long as the property is being used for the purpose for which it was given.
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How is Very Special Kids staffed?
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Family Support Team: a team of professional staff who work directly with families. This team is made up of social workers, psychologists, family therapists and counsellors.
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Very Special Kids House provides 24/7 care with a full time manager and a team of nurses and personal care assistants. The House has a Registered Nurse on every shift, and the team works closely with local doctors and other health professionals.
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Fundraising, Communications, Corporate and Administration Teams: professional staff who look after the fundraising, public relations, marketing, accounting, administration and reception areas.
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Where do the volunteers fit in?
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Family Support Volunteers – Very Special Kids has trained volunteers who work closely with families, mainly in their homes, but also in hospitals and at Very Special Kids House. All volunteers who work directly with families are supervised and must complete Very Special Kids’ accredited nine-week Family Support Volunteer Training Program. In addition to supervision, a professional development program also provides trained volunteers with opportunities to further their knowledge.
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Friends of Very Special Kids – Another group of volunteers known as the Friends of Very Special Kids provide valuable support in fundraising, administration, mailouts, gardening etc. Extra hands are always needed at Very Special Kids, and volunteers are welcome. To become a Friend, please come to an information night, which are generally held every second month.
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How does Very Special Kids House operate?
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Our children’s hospice, Very Special Kids House, offers respite, transitional and end-of-life care for families of children with life-threatening illnesses. In 2006-07, the hospice had 336 admissions.
Caring for these children can be exhausting for parents, both physically and emotionally, and the ongoing treatment can put enormous strain on family relationships. Parents can leave their children at Very Special Kids House knowing that they will receive specialist care while parents recharge their own batteries and spend quality time with their other children.
Up to eight children can be accommodated at Very Special Kids House at any one time and, if the parents want to stay close by, they can do so in the parent accommodation.
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Very Special Kids House is designed to be an extension of the family home – a place that is warm and welcoming for children and parents alike. Most children who come to stay have high medical needs. The House is a place for living – the children are engaged and stimulated through play, music and massage therapies.
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Very Special Kids House is accredited by the Australian Council on Healthcare Standards
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Is there a limit on staying in the House?
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Most children come for respite and the length of stay varies from a weekend to two weeks. If a child is requiring end-of-life care, there is no limit on the length of stay.
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Can children come to Very Special Kids House to die?
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Yes. Very Special Kids House offers a choice of care to families when the time comes for their child to die. For whatever reason, the family may not want the child to die in hospital and it may not be practical for the child to die at home. Very Special Kids House is there for those families.
The family and friends can be together with the child and even the family pet can stay. During the whole process, the child and the family are supported and cared for, yet the staff never intrude. After the child has died, the family may wish to dress their child and stay with their child. Other family members may come in and spend time together and a time limit is never imposed.
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Do families have to pay anything?
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No. Use of Very Special Kids House and all other services are free to all Very Special Kids families to ensure equity of access and because many families face financial hardship.
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Is there another facility like this?
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Very Special Kids is the first organisation of its kind in the country. Other organisations offer components of Very Special Kids’ model of care. In 2001, Sydney opened Bear Cottage, which is part of the Children’s Hospital at Westmead and provides care for children similar to the children supported by Very Special Kids. The Hospice is located in Manly. Zoe’s Place, which offers a family support program similar to Very Special Kids, opened in 1999 in Queensland.
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Are you aligned with other organisations like Make A Wish, CanTeen, Challenge or Ronald McDonald House?
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No. Very Special Kids is a separate and unique organisation. Many of the families that Very Special Kids supports, however, access these organisations where appropriate.
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