What is Very Special Kids?
Very Special Kids is a unique organisation that supports families throughout their experience of caring for children with life-threatening conditions, from diagnosis through to recovery or bereavement. The services are offered free of charge by a team of professional family support workers and hospice staff, who have backgrounds in social work, psychology, family therapy and nursing. These staff are supported by trained family volunteers. The organisation has operated Very Special Kids House since 1996, Australia’s first and Victoria’s only children’s hospice, providing planned and emergency respite and end-of-life care.
Who started it?
In 1984 two families who were going through the trauma of their children dying came together to support each other. At the time, there was little in the way of community support services available for families who had children with life-threatening conditions. 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.
What is the nature of the support that Very Special Kids provides?
Very Special Kids take a whole family 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 flexible services and programs that are offered:
• centred on the family
• to all Victorian families of children with life-threatening conditions
• with specialist staff and more than 200 trained Family Support Volunteers
• with the engagement of the community
How many families is Very Special Kids helping?
Very Special Kids is currently supporting more than 800 families across Victoria. This number has been increasing each year.
Where is Very Special Kids located?
The main office and Very Special Kids House are located at 321 Glenferrie Road, 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. The organisation now has offices in Brunswick (covering the northern and western suburbs), Ballarat, Rosebud, Shepparton, Torquay, Traralgon and Warnnambool.
What does the term ‘life-threatening conditions’ mean?
Life-threatening conditions are those for which curative treatment may be feasible but can fail. There is a very significant possibility the child will not reach adulthood. These conditions 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, organ failure, degenerative neurological conditions and cancer. Many of the children we support have high medical and care needs.
Are the children who come to Very Special Kids at a critical stage of the condition?
Some are, but others have been part of Very Special Kids for years following diagnosis. 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.
How do people come to Very Special Kids?
Very Special Kids can be contacted directly by telephone on 03 9804 6222 or 1800 888 875 by a family member in Victoria who has a child with a life-threatening condition and needs help. Families are also referred through the Royal Children’s Hospital, the Monash Medical Centre, the Victorian Paediatric Palliative Care Program (an alliance between Very Special Kids, the Royal Children’s Hospital and the Monash Medical Centre), community health providers and numerous other support organisations.
How is Very Special Kids funded?
Very Special Kids receives 33% of its annual income as recurrent funding from the Department of Health. Each year we need to raise more than $3.3 million from donations, appeals, events and other fundraising activities. The annual Piggy Bank Appeal held in September needs to raise more than $1million.
Very Special Kids enjoys generous support from many other businesses and organisations. For more information, please visit the corporate supporters section of this website.
What other support has the Government given Very Special Kids?
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 conditions.
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.
How is Very Special Kids staffed?
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.
Very Special Kids House staff: which includes full time manager, a team of nurses and personal care assistants provide 24/7 care. The House has a Registered Nurse on every shift, and the team works closely with local doctors and other health professionals.
The Fundraising, Communications, Corporate and Administration Teams: through professional staff, look after the fundraising, public relations, marketing, accounting, administration and reception areas.
Where do the volunteers fit in?
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’ 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.
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.
What does Very Special Kids House offer?
Very Special Kids House offers planned and emergency respite and end-of-life care for families of children with life-threatening conditions.
Caring for these children can be exhausting for parents, both physically and emotionally, and the can place 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. 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. The House is a place for living – the children are engaged and stimulated through play, music and outings.
Very Special Kids House is accredited by the Australian Council on Healthcare Standards.
Is there a limit on staying in the House?
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.
Can children come to Very Special Kids House to die?
Yes. Very Special Kids House offers a choice of care to families when children are requiring end-of-life care. 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. Other family members may come in and spend time together and a time limit is never imposed.
Do families have to pay anything?
No. Access to Very Special Kids House and all other services are free to all families registered with Very Special Kids to ensure equity of access and because many families face a range of financial hardships as a result of having a child with a life-threatening condition.
Is there another facility like this?
Very Special Kids was the first organisation of its kind in the country and the only independent children’s hospice. The Children’s Hospital at Westmead, Sydney opened Bear Cottage in 2001 which also provides respite and end-of-life care for children with life-threatening conditions in NSW.
Are you aligned with other organisations like Make A Wish, CanTeen, Challenge or Ronald McDonald House?
No. Very Special Kids is a separate legal entity. Many of the families that Very Special Kids supports do access a range of other organisations, where appropriate.