Download Camp Quality - The Treasury

Pre Budget Submission 2016
Primary School
Education Program
Recommendation: The Federal Government support the day-to-day operating
costs of the Primary School Education Program. This investment of $3.63 million
over three years will allow Camp Quality to seek community and corporate
partners to expand the program through new technologies and expanded
support. This investment represents only $5.95 per child aided by the project.
1
“They were buzzing about it! For me, as the classroom
teacher for a sibling, it was great – the sibling was able to
answer questions within the puppet show which made the
class see him as an expert!
That was really good for his self confidence…”
- Primary School Teacher
2
Contents
Executive Summary ................................................................... 44
About Camp Quality ................................................................... 66
The Need ..................................................................................... 88
Case Study .................................................................................... 10
10
The Primary School Education Program ............................ 13
11
How the Primary School Education Program works ..... 13
The Future ........................................................................................14
Outcomes ........................................................................................ 15
Research............................................................................................ 16
Federal Funding and the year that was .............................. 18
The Funding Challenges ........................................................... 20
Justification for Support .......................................................... 22
Summary & Contact Details ......................................................28
Appendix .......................................................................................... 29
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Executive Summary
With mental health issues affecting 61% of young people who have a parent with cancer (known
as ‘Offspring’), and youth mental illness costing the Australian economy over $10billion annually,
preventative early intervention is vital. This submission is asking for the Federal Government to assist
with the vital running costs of our Primary School Education Program.
This will allow Camp Quality to continue to expand the offering to reach more children, particularly
those who live in regional and remote areas via new communications technology, and those with special
needs. This will require an investment of $3.63 million over 3 years from the Federal Government, which
represents only $5.95 per child supported.
About Camp Quality
Camp Quality was formed in 1983 with the purpose of creating a better life for every child (0-13 years)
living with cancer in Australia. Our programs help over 205,000 children and their families each year, and
are split into four suites:
•
•
•
•
Family Support Programs - improving a family’s quality of life through practical support tailored to
their needs throughout the cancer journey.
Hospital Programs – Helping children deal with cancer during treatment through procedural
education, information, distraction and structured play.
Education programs – Helping children and teachers learn how to create a supportive school
community for children living with cancer and their families.
Recreation programs – Helping families embrace normality and celebrate life, in a fun, supportive and
stimulating environment.
Camp Quality is now gradually expanding to support children who have a parent with cancer (Offspring).
This is the result of extensive research commissioned by Camp Quality, both to determine the need, and
the most efficient ways to meet those needs.
Facts about Offspring Children
•
•
•
•
There are 130,000 children (aged 0-13 years) who have a parent living with cancer (whether recently
diagnosed, in treatment, in remission, or in palliative care). This is increased by 27 children every day
61% of young people who have a parent with cancer have high to very high levels of psychological
distress compared with 9% of young people in the general population.
There is no national body in Australia that offers support to these children
Offspring children have many similar needs to the other children Camp Quality supports
The Need
130,000
Children
aged between 0-13 have a
parent with cancer at any
time in Australia
(this includes bereaved
families)
CHILD
AGED
0-13
Greatest need is
Age-appropriate
information, and
support in the school
evnironment
The cost to the
economy of youth
mental illness is
Early intervention is
the most effective
use of funding to
prevent mental halth
issues
$10.6billion
annually
CHILD
CHILD
AGED
AGED
0-13
0-13
CHILD
CHILD
AGED
AGED
0-13
0-13
Camp Quality’s Primary School Education
Program can help these children at a cost of
Chart 1: The needs of children (0-13) who have a parent with cancer
4
$5.95 per child
The Research
Camp Quality has used many methods of research to reach the stage we are at now, including
commissioning a worldwide literature review by a respected academic in the field, Dr Claire Wakefield, of
UNSW and Sydney Children’s Hospital.
The research produced a number of key findings (the two most pertinent are shown below, please
contact Camp Quality for the full report):
1. The need for age-appropriate information about their parent’s cancer
2. The requirement of peer support to reduce feelings of isolation
The Solution
The Primary School Education Program covers many mental-health issues faced by children who are
dealing with cancer, either as a patient, a sibling of a patient, or as a child who has a parent with cancer.
A key component of the program is an educational performance using high-energy ‘Muppet-style’
puppets.
•
•
•
•
•
The puppets have a unique way of building trust quickly, in a non-threatening way.
The puppets enable children to visualize the impact their behaviours have on other children, and
reinforce anti-bullying messages.
They provide practical examples of things children can do to support their classmates.
We provide follow-up materials to schools and teachers which provide a practical guide to helping
children living with cancer.
The follow-up materials also give teachers the knowledge to answer any further questions the
children may have.
What we are asking from the Federal Government
We are asking the Federal Government to fund the ‘bread and butter’ of our Primary School Education
Program. For over 20 years this program was funded exclusively by McDonalds Australia. Since then we
have been actively searching for a partner to assist with the ongoing costs of this, our most far-reaching
program.
To manage the day to day costs of this program, we would need $3.63million over a three year period.
This will allow us to seek funding elsewhere for expansion services to the program, something which
Camp Quality has a strong track record of doing.
Justification for Support
There are more details in the body of the submission, but these top line examples provide a compelling
case for our support:
•
•
•
•
•
The Primary School Education Program will be seen by over 205,000 children every year, with a cost
per child of only $5.95. This represents great value for money
The program has been proven to work, and the acquittal of previous funding shows that Camp
Quality are responsible custodians of federal money
When it comes to supporting children aged 0-13 years, who have been affected by cancer, Camp
Quality are leaders in the sector, with many of our programs being the first of their kind in the world
The Primary School Education Program aligns strongly with many Coalition policy areas, including;
Mental Health, Child Safety, Health, and Education
Camp Quality is the most highly regarded children’s charity in Australia, according to the 2014 AMR
Charity Reputation Index. We are also the only charity in the top 15 of that survey which doesn’t
receive regular government funding
5
About Camp Quality
Our purpose is to create a better life for every child (0-13 years) living with cancer in Australia.
The History of Camp Quality
Camp Quality was founded in 1983, in a living room in the Western Suburbs of Sydney, with the objective
of providing support to families who had a child with cancer. Our first event was held in September of
that year, when 38 children and 38 volunteers attended a recreational camp in Vision Valley, just outside
Sydney. The purpose of our first ever camp was to provide the children with recreational activities that
they would have missed out on due to their illness.
From this beginning, Camp Quality grew to incorporate more sophisticated programs, such as our
primary School Education Program, where a high energy ‘Muppet-style’ puppet show visited primary
schools across Australia to educate children about cancer. By providing this education, and dispelling
myths (such as, “Can you catch cancer?”) we eased the path back into full-time education for children
with cancer, and also empowered children to be supportive of people with cancer.
Along the way, we have added other programs such as:
•
Child Life Therapy – The Child Life Therapist is part of the Allied Health Team and works in hospitals
to make children more comfortable in the alien and sterile environment. By providing the children
with themed play, and talking them through the procedures they will undergo, they ease the anxieties
that children have regarding their treatment. This kind of procedural support helps reduce the
number of general anaesthetics and sedations that children have to go through. They also use other
kinds of play to continue their social and emotional development at a time when their peers are
rapidly developing without them
•
Graduation Program – It is common for children who develop cancer to become dependent on the
support given, this program allows them to build their own strengths, make future plans, and gain the
tools to realise them
•
“Kids’ Guide to Cancer” App – This is Camp Quality’s first use of new communications technology
to directly help our children and families. The app is aimed at children who have someone in their
life who has been diagnosed with cancer. This can be a family member, a classmate, teacher, soccer
coach, family friend. This app is the first of its kind in the world, and was developed in conjunction
with education experts, child psychologists, and experts in the field of cancer.
We are constantly challenging ourselves to find the best ways to help our families, and this is why, in
2010/2011, Camp Quality commissioned an extensive and independent research project. The aim of this
research was to develop a broader understanding of the needs of children with cancer and their families,
to determine how their needs were being met by Camp Quality and other organisations, to identify the
gaps in services and to further enhance Camp Quality’s programs.
One of the key findings of this report was that there is no national support for children (0-13 years) who
have a parent with cancer (known throughout the sector as ‘Offspring’). Research has shown that these
children have many similar needs to children with cancer, and the siblings of children with cancer. This is
why Camp Quality is uniquely well-positioned to support these children.
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The Present
Camp Quality is primarily a volunteer organisation with over 2,500 volunteers nationally, supported by
just over 110 staff. With 12 offices across Australia, we have a major presence in all the state/territory
capitals, and other population centres, such as Newcastle, Townsville, and the Illawarra region. We have
been supporting our families for over 30 years, and are recognised internationally as experts in our field.
We currently support over 3,000 families who have a child with cancer, hold over 220 family events
annually, and have dedicated staff who visit every major paediatric oncology ward in Australia on a
frequent basis. We support families at every stage of their cancer journey, from diagnosis, to treatment,
returning to school, and remission. Unfortunately, for 1 in 4 of our families, they will move into palliative
care, and then bereavement. We are there at those times too.
Our Primary School Education Program is seen by over 205,000 children annually, and by 2017 it will
have been seen by over 5 million Australian Primary School children. We provide specialist care in 5 of
Australia’s 7 major paediatric oncology wards, and are working on the rest. In 2011 we were reaching only
1 in 3 families who have a child aged 0-13 with cancer. Currently we are reaching 2 in 3. By 2017 we will be
reaching 3 in 3.
We have 11 specialist evidence-based programs, tailored to our families’ needs. We regularly evaluate our
programs on 4 categories; relevance, reach, equity and effectiveness.
Of course, all these programs require funding, and to that end, our gross revenue has grown every
year. We have more workplace giving programs, more corporate partners, more fundraising volunteers,
more signature events, and more impact than ever. Current estimates put our national footprint at over
1,000,000 Australians annually.
To sum up; we are supporting more children and more families, in more locations, and more effectively
and efficiently, than ever before. But to continue our path to excellence in service, we need more.
The Future
Our newly adapted Primary School Education Program launched nationally in January 2015, thanks to
funding provided by the Federal Government. It was the first of our major programs dedicated to helping
Offspring children aged 0-13 years. Over the next 3-4 years we will be rolling out another 5 programs
specifically designed with this group in mind. We will also be focussing on bringing wellbeing and
mindfulness to the core of our programs, as research shows that this is a vital form of early intervention
for children who have cancer brought into their world, and are subsequently at risk of a host of mental
illnesses.
“…one of the girls in my daughter’s class, her mother actually
has bowel cancer so she found it really helpful. She thought
she was alone and she then approached my daughter and said,
“Oh, my mum’s got cancer too. Is your sister okay?”
- Parent living with cancer
7
The Need – Overview
The range and scope of health issues affecting children today is vastly different to that experienced by
previous generations. The second ranked health issue facing children in Australia today is mental health.
More and more Australian children are suffering from depression and anxiety. In extreme cases these lead
to suicidal thoughts and even suicide. Even in milder cases this is something that leads to poor academic
performance, with all the attendant knock-ons for the economy.
In 2009, Access Economics Pty Ltd released a study called “The economic impact of youth mental illness
and the cost effectiveness of early intervention”. The study found that in 2009 the cost to the economy
of mental illness among 12-25 year olds was $10.6billion.
The study also found that targeted intervention, i.e. early intervention to groups at risk of mental illness
(like anxiety and/or depression) was the most effective and efficient use of funding.
Research conducted by CanTeen, in collaboration with the University of Sydney, found that 61% of young
people who have a parent with cancer have high to very high levels of psychological distress compared
with 9% of young people in the general population.
Young people have also reported lower than normative levels of self-esteem. Young people who have a
parent with cancer experience fear and anxiety surrounding their parent’s prognosis and if they do not
utilise effective coping skills it can result in the development of long-term mental illness.
The three main areas where needs were not being met were: peer support; support at work/school; and
expressing and coping with emotions.
This tied in very clearly with our research which showed that the greatest unmet need of children who
have a parent with cancer was age-appropriate information in the school environment.
All this research points to the need for age-appropriate information about cancer, which also helps create
a stronger and more supportive school community. There is only one program which meets this need for
primary school aged children nationally, and that is the Primary School Education Program run by
Camp Quality.
Figure 1: The needs of children (0-13) who have a parent with cancer
130,000
Children
aged between 0-13 have a
parent with cancer at any
time in Australia
(this includes bereaved
families)
CHILD
AGED
0-13
Greatest need is
Age-appropriate
information, and
support in the school
evnironment
The cost to the
economy of youth
mental illness is
Early intervention is
the most effective
use of funding to
prevent mental halth
issues
$10.6billion
annually
CHILD
CHILD
AGED
AGED
0-13
0-13
CHILD
CHILD
AGED
AGED
0-13
0-13
Camp Quality’s Primary School Education
Program can help these children at a cost of
$5.95 per child
8
In Kevin Andrews’ speech to the Australian Research Alliance for Children
and Youth in November 2013:
“…the evidence of the past three of four decades now, is that prevention and early intervention is the
key. And yet as Sarah reminded us, too often, we are funding the ambulance at the foot of the cliff rather
than building or rebuilding the fence at the top. And I hope that in my area of responsibility, one of the
things that we can do over the next few years is to try and reweight the focus to the prevention and early
intervention. Yes we will always need ambulances at the foot of the cliff but if we can build the fence a bit
better, then maybe we can prevent some of that need.”
What happens to children who are dealing with cancer?
There are many parallels between the experiences of children who have cancer and children who have a
sibling or parent with cancer.
These children who have a sibling or parent with cancer often have to take on more adult roles at home,
far beyond what is appropriate for their age and stage of development. Amongst younger children there
are also commonly feelings of guilt, as if the disease may be a punishment for some unspecified ‘bad
behaviour’. They struggle to interact with those who are not directly involved with their family situation,
and whatever interaction there is can be unhealthy. This lack of understanding of their needs can lead
to such seemingly contradictory behaviours as aggression, withdrawal, depression, secrecy, and anxiety.
These all negatively affect their performance in school, and their understanding of social behaviour.
Figure 2: The experience of a child living with cancer
Child with cancer
• Physical difficulties/abnormalities
• Possible decrease in cognitive function
• A long time out of school
• Loss of social skills/ confidence
• Interruption of relationships
Supported by
Camp Quality through
the Primary school
Eductaion Program
Many Similar needs
particularly dealing
with the loss of
childhood
• Bullying
• Loss of
academic
performance
Sibling
Offspring
• Decreased parental attention
• Lack of interest in them
• Difficult questions from peers that they
cannot answer
• Constant enquiries on their siblings health
• No national support
• Unspecified feelings of guilt
• Difficulty relating to people outside
their family circle
• Secrecy
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Case Study:
Mya has recently had a cancer diagnosis, and her first thought was, “What do I tell my kids? How will
they react?”
Camp Quality was able to provide helpful information on this from the Cancer Council; however it quickly
became apparent to her that the children needed an avenue to explore the topic and validate their
feelings outside of the mother/child relationship. One of the reasons Mya is so enthusiastic about the
development of Camp Quality’s Offspring programs is that, whilst her conversational English is excellent,
there are complexities and an ‘adult’ context to the information she had about cancer that she was not
able to communicate to her children (who have English as a first language).
One of the consequences of this was that her son withdrew into himself, and started looking at things on
the internet to find information on his own. This was very worrying for Mya, as the information that may
be found by a simple Google search is not age-appropriate, and may cause him to have unrealistic ideas
about what will happen to his mother.
By producing educational programs that will allow him to find out appropriate information, in an
environment he feels safe in, we can hopefully stop his anxiety, and reduce his isolation and withdrawal.
Please copy and follow this link if you are unable to watch the video now:
https://www.campquality.org.au/mya-video
“I think it is really useful. I think it definitely helps the
transition back and a lot of kids have questions and they’re
not really sure how to ask and it’s just a nice way of dealing
with some of the stuff that they’re not really sure of and
letting them feel more comfortable as well. I think it’s great.”
- Parent living with cancer
10
The Primary School Education
Program – Overview
The Primary School Education Program (PSP) is one of Camp Quality’s longest running programs, and
probably the most well-known. Since 1988 it has been seen by over 4 million children, and will hit 5
million by 2017. Camp Quality received $1million from the Federal Government for the last financial year
to fund the adaptation of our existing program into one that also supported Offspring children. This
program launched nationally in January 2015, and by 30th June 2015, 104,411 children had seen the new
version. The puppets also visit the major paediatric oncology wards across Australia (mostly on a weekly
basis) to give respite and fun to the children and families currently receiving treatment.
Format
A key component of the program is an educational performance using high-energy ‘Muppet-style’
puppets. The performance dispels the myths which many children have about cancer (chief among them
- you can’t “catch” cancer) and gives examples of how to be supportive when a child in their school is
living with cancer.
•
There are three different shows to cater to three different age groups; pre-school (ages 3-5), infants
(ages 5-7), and primary (ages 7-12) – this allows communication to children in their own language
•
The puppets have a unique way of building trust quickly, in a non-threatening way.
•
The puppets enable children to visualize the impact their behaviours have on other children, and
reinforce anti-bullying messages.
•
They provide practical examples of things children can do to support their classmates.
•
We provide follow-up materials to schools and teachers which provide a practical guide to helping
children living with cancer. Examples of these materials are in the appendix of this document.
•
The follow-up materials also give teachers the knowledge to answer any further questions the
children may have, these also tie in with the Kids’ Guide to Cancer App
•
The visits to hospitals give the children something to look forward to, and provide respite and
laughter at a difficult time
Table 1: The Reach of the Primary School Education Program
State/Territory
School Visits
Hospital
Total Children
NSW/ACT
144
68
48,000
Qld
128
56
43,000
Vic/Tas
128
40
43,000
SA/NT
104
40
35,500
WA
104
40
35,500
Total
608
244
205,000
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The Offspring Suite of Programs
The Primary School Education Program is part of our developing suite of ‘Offspring’ programs. These
can be separated into 3 different categories, each representing the major needs of children who have a
parent with cancer:
•
Emotional Wellbeing – Connect Care, Coping Skills for Kids
•
Education – Primary School Education Program, the Kids’ Guide to cancer app, the Young Kids’ app
•
Recreation – Family Experiences, Family Fun Days, Kids Camps
Each program is targeted at a specific need that our research has identified, as there simply is no ‘one
size fits all’ option.
Research has shown us that not every Offspring child will need all of these programs, so they have been
designed to cover the most pressing needs for all children, and the children that require more in-depth
support will be able to access it when the programs are fully developed and funded.
More information about the rest of the programs in ‘Offspring’ is available in the appendix of this
submission.
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How the Primary School
Education Program works
The Primary School Education Program is managed nationally from our Head Office in Epping, NSW. The
structure of the staffing is shown in the diagram below:
Figure 3: Camp Quality Primary School Program Staffing Structure
PSP Coordinator
(QLD)
PSP Coordinator
(WA)
PSP Coordinator
(SA)
PSP Coordinator
(VIC/TAS)
PSP Performers
(QLD)
PSP Performers
(WA)
PSP Performers
(SA)
PSP Performers
(VIC/TAS)
PSP Coordinator
PSP Performers
The team in each area work closely with many of our other departments (particularly with our Hospital
Support Coordinators) so that they know when a family is going to reintroduce their child to school after
cancer treatment. These children, their siblings, and their schools are then given priority booking. We also
receive requests from schools, social workers, school counsellors etc. to visit their schools. This is more
notable in the case of children who have a parent with cancer, as we do not have a strong internal referral
pathway yet for these cases.
When we receive a request from a school in a more regional or remote area, we will arrange to visit other
local schools. We have found that frequently these other schools have a child with a parent who has
cancer. This has happened so often that, even though we do not have a strong referral process to ensure
we get to see Offspring children, 53% of shows last year were attended by a child who has a parent with
cancer. This shows how endemic the problem is, nationally.
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The Future
The future of the Primary School Education Program is about meeting the gaps in our service,
particularly amongst remote communities, and also meeting the needs of pre-school and special needs
children. These new developments are of the type and scale that Camp Quality excels at ‘selling’ to
private and corporate donors. By funding the program as is, the Federal Government would allow Camp
Quality to reach these smaller areas of need that have previously had no attention. Below is a list of
some of the ways Camp Quality would be able to expand the program if freed to do so by the Federal
Government:
Utilising modern technology:
•
•
•
Cyber-Drama involving interactive videos/games that can be accessed by individual classrooms
anywhere in the country. This would be particularly powerful for areas that are remote, or where there
is only one school in a particular area, and we could not justify the cost of a special trip to that area
Moderately interactive cyber-drama, based on our current website. This would be a smaller version of
the above idea, but could be accessed by anyone with internet access. This is something that could
be used as a ‘refresher’ for families
Develop and expand the teacher resources currently used, into an online format. This would be
something teachers could use in class, and would include interactive games to aid retention of the
key messages
Aiding Wellbeing and Mindfulness:
•
•
By adding elements of mindfulness to the program in schools, we can add value in terms of
wellbeing for the children too. This is something that would require research and development before
implementation, but is something that we have been asked for by education specialists
To accompany visits from the puppets in hospitals, we would develop booklets and worksheets to
help children explore their emotions. By using these with their families the children will be able to
communicate complicated feeling to their parents, without feeling self-conscious about it. This would
again be a multi-stage development process
Aiding Excellence:
•
•
Our puppeteers are all trained actors; however it would be desirable to have our permanent staff
attend a professional puppeteer workshop. This would be an experience that would increase their
professional development – something that is always extremely desirable for staff retention
Yearly national rehearsals for our puppeteer staff. Although our puppeteers cover the whole country,
they do not often meet eachother. This yearly rehearsal would allow for the sharing of best-practice
Expanding our capabilities:
•
•
Our hospital program visits the major oncology wards across the country regularly. However this is
often put on hold during term-time as we do not have the resources to visits schools and hospitals at
the same time. By increasing our capacity we could continue to visit hospitals year-round
Script development – by getting a professional script written for special development schools we
can cover a gap in our service – children with special needs. This could encompass children with an
intellectual disability, physical disability, vision impairment, hearing impairment, language disorder,
mental health condition or autism.
14
Outcomes
For over 25 years, the Primary School Education Program has delivered the following outcomes for over
4 million children across Australia:
• Increased support and understanding at school.
The research highlights the importance of supporting a child living with cancer transition back to
school through educating teachers and students about cancer. Our primary school program focuses on
educating students and teachers on the facts, in an environment that is open and safe. We have found
that once children are informed, they are very supportive. They are much more aware of the need to
support and care for others. This why the program has such a large reach – it will teach children who do
not have an adult in their life with cancer how to be supportive of those that do.
“My name is Liam and I had cancer. Now that you have done the puppet show I can go to school without
being teased about cancer. You have helped me so much and I am so grateful beyond words. Now
people will stop teasing me about cancer. THANK YOU SO MUCH!” –Patient
• Build confidence and reduce social anxiety by alleviating bullying.
The primary school program gives the child living with cancer and the sibling an opportunity to feel
special, respected and understood. The show addresses common misconceptions about cancer (e.g.
‘you can’t catch cancer’) which allows children to feel more confident when dealing with their peers. The
program opens up the lines of communication, empowering the child to speak about their circumstance
without fear of bullying. This enables the children to feel more positive about full-time education.
“Some of the classmates who didn’t know you had cancer, have more respect for you” – Patient
• Build optimism, resilience and the capacity to celebrate life
The Primary School Education Program is a unique opportunity for children to look at the illness in a
different light. It takes it out of the ‘normal’ context and brings it into a world of imaginary characters
that are honest, courageous and funny. This allows them to adapt some of those characteristics to their
own situation and learn optimism through imagination and observation.
The program in hospitals allows families to laugh and celebrate the good moments. By bringing
happiness and fun into the hospital, the families are able to focus on something positive no matter what
stage of their journey they are in.
• Hope for the future
The puppet visits to the hospitals gives the children something positive to look forward to and creates a
sense of expectation. Seeing children in the hospital and then later in their school reinforces the positive
messages. Psychologists agree that looking forward to positive experiences creates ‘future minded
thinking’ which is a vital component of coping with a long term crisis.
15
Research
Camp Quality always designs and develops programs with careful research to establish many differing
factors, particularly around need, effectiveness, and efficiency. This research is defined by Camp Quality in
the terms below:
Camp Quality Tier 1 Research
This indicates research that was conceived, designed, and carried out by Camp Quality, generally to answer
very specific questions about various programs/policies.
•
Survey to Oncology Social Workers & School Counsellors, Camp Quality. Conducted by Camp Quality
– March 2013
This was an online survey sent to social workers in the adult oncology sector, and school counsellors in
primary schools. The main objective was to gather feedback on Camp Quality’s decision to enter the
Offspring space, and to ask their advice on the best program suite to meet the needs of children who have
a parent with cancer. Another objective was to identify what programs or services that these professionals
currently referred children to, and where the gaps were, and what they felt would be most beneficial to
children in this situation. The survey was well supported and showed an overwhelming desire for Camp
Quality to enter the Offspring space. The key findings were:
1. There were very few or no programs on offer in terms of; Education, Respite, Resilience and Support
for children under the age of 13
2. The programs that do exist are not age-appropriate, or are difficult to access, due to demand,
geographical location or other factors
•
Survey to Primary School Teachers about the desired features of an educational performance dealing
with cancer, Camp Quality. Conducted by Camp Quality – November 2014
This was an online survey sent to primary school teachers to gather feedback on the pilot phase of our
newly adapted Primary School Education Program. The main objective was to gain a deeper understanding
of what teachers, who work with the children every day, felt about the impact of the show, and to find out
what messages were working for children who had a parent with cancer. The key findings were:
1. 94% of teachers surveyed would recommend the show to others and would book the show again
2. The teachers surveyed felt that showing the child who has a parent with cancer in a normalised
setting was invaluable, and that the cancer education for their peers helped them to feel less isolated.
Camp Quality Tier 2 Research
This indicates research that was designed in consultation with an independently commissioned body, and
was carried out by them. This was generally used to cover broader areas such as performance and strategy.
Generally the third party is also used to interpret the results.
•
Understanding the needs of families living with cancer in Australia, Camp Quality Family Research
Project. Conducted by ARTD Consultants – February 2011.
Camp Quality commissioned an extensive and independent research project to develop a broader
understanding of the needs of children with cancer and their families, to determine how their needs
were being met by Camp Quality and other organisations, to identify the gaps in services, and to further
enhance Camp Quality’s programs. The views of Camp Quality children, their siblings and their parents
are represented in this research, as well as the views of relevant health care professionals. The project
involved focus groups with families across Australia, surveys of families and health professionals and a
literature review of the psychosocial needs of families during the cancer journey. This was an enormous
piece of research, the largest in the world at the time, and produced several results that have changed
Camp Quality’s direction, policies, and strategies for the years ahead. Key findings from this project that are
relevant to this submission included:
1. The need for children to have access to age-appropriate information about cancer
2. The need to reduce the age-range of children that were supported by Camp Quality from 0-18 years
to 0-13 years. This meant that there was reduced duplication in the sector as CanTeen service the
16
‘teenage and above’ age group with distinction. This allowed camp Quality to sharpen focus on the
core of families we support, and to expand to support Offspring children
Another of the strategic directions that arose from this research was our decision to expand to include
Offspring.
Camp Quality Tier 3 Research
This indicates research that was only framed by Camp Quality. An independent body is then commissioned
to design, develop and carry out the research. This is used for pieces such as literature reviews and other
comparative items of academia.
•
Providing psychosocial support to children with a parent with cancer: A systematic review of
children’s needs and the impact of interventions available for 0-13 year olds. Conducted by Dr. Claire
Wakefield, UNSW Medicine – August 2013.
Camp Quality commissioned Dr. Claire Wakefield to conduct a worldwide literature review to understand
the needs of children who have a parent with cancer, the programs currently available worldwide, and their
suitability for use in Australia. Ranking the key findings from this study highlights:
1. The need for age-appropriate information about their parent’s cancer (this is a result that has shown
up consistently as the strongest ‘unmet need’, both in anecdotal and academic research)
2. The need for support communicating with their parents and other family members
3. The requirement of peer support to reduce feelings of isolation. This is why providing education to
the peers of these children is so vital, and why the reach of the Primary School Education Program,
and the Kids’ App are so important
4. There is a lack of ‘safe-spaces’ to share their feelings
5. There is no comprehensive suite of programs designed to meet all these needs anywhere in the
world, but that interventions designed to meet the majority of needs identified in the review, which
incorporate parents in the intervention, yield positive results for the children
Camp Quality Tier 4 Research
This indicates research that has been undertaken by independent bodies such as Health Departments,
academics, or other NFPs. This research is only used sparingly, mainly as guidance, or to illustrate wider
support for a Camp Quality position. This is because it is generally not specific enough to apply to
children in our age-bracket, or applicable to Australia as a low population-density, highly-developed
nation. However it is always taken from reputable, peer-reviewed sources, and can be highly illuminating.
Examples of this research that are relevant to this submission are available in the appendix of this
document.
17
Federal Funding and the
year that was…
How the Federal Funding was achieved
In June 2014, the Minister for Social Services (The Hon Kevin Andrews MP) agreed to fund the adaptation
of the Primary School Education Program to cater for children who had a parent living with cancer, as
well as the traditional focus of the program; children living with cancer and their siblings.
The program immediately started work on researching the adaptation, including surveying schools,
convening panels of experts from the fields of education, health, and psychology to develop content.
This content was reviewed in conjunction with the Cancer Council of Australia and a panel of teachers
nationwide.
With the content decided on, we recruited specialist script-writers and stage directors to mold it into a
format that would be engaging for children across all the age groups in Primary School. Camp Quality
also developed specialist resources for the performers to leave with the schools to ensure the messages
of the program lived long beyond the performance itself.
This was piloted in two stages across NSW, in August and November, with feedback from schools and
the performers contributing to rewrites. The show was formally launched in November 2014 by The Hon
Kevin Andrews at a specially arranged showcase event in Melbourne. It went nationwide in Term 1 of 2015.
How the money was used
The money was used in a variety of ways:
• To fund a survey of schools and teachers about the existing program, and where they felt it needed
improvement
• To develop new content in conjunction with child psychologists, educational experts, and have the
new content reviewed by groups such The Cancer Council
• To run a pilot of the new show in NSW and the ACT, and have this pilot evaluated to ensure relevance,
and fine-tune content
• To fund the involvement of a professional scriptwriter (Joanne Erskine of the Bell Shakespeare
Company) to help us adapt this new content into a show that could be presented to differing agegroups. It also included a number of workshops with a professional theatre director to establish the
flow and style of the show – vital to maintain the interest of young children
• To retrain the staff in the new show, including a national rehearsal session – the first time Camp
Quality has been able to have all our puppeteers in one place at the same time
• To develop and produce new collateral to help teachers work with children and answer any further
questions they have, after the show has visited
• To launch the show at special events in Melbourne and Sydney. To these shows we invited corporate
and community partners, along with prospective donors.
• To actually deliver the new show to 104,411 children across the country. This was against a target of
100,000
Results
Camp Quality is in the midst of a large-scale evaluation of the project, which will be ready to be
published in the first quarter of 2016. Our early indications are that:
•
•
•
We have a satisfaction rating from schools of over 97%
84% of teachers believe that children retain the messages well
80% of children remember key messages from the show (such as “you can’t catch cancer from
someone else”) 3 months after the show has visited. Our initial expectations were that this number
would be around 70%
18
Who has seen the show?
In terms of reaching our targeted groups (children living with cancer – either as a patient, a sibling, or a
child of someone with cancer) our reports show that:
•
•
•
•
•
53% of shows were attended by a child who has a parent with cancer
44% of shows were attended by a child who has cancer
40% of shows were attended by a child who has a sibling with cancer
16% of shows were attended by a child who has lost a parent to cancer
2.6% of shows were attended by a child who has lost a sibling to cancer
These numbers were largely as expected, however we were surprised by the 53% who had a parent with
cancer, as this was not a group we had a strong referral pathway for. In other words, this group is larger
and more in need of support than we predicted.
The Launches
A ‘first-view’ national launch was held in Melbourne on the 10th November 2014, and was attended by
a mixture of Camp Quality’s corporate partners, philanthropists, trusts and foundations. The event was
launched by The Hon Kevin Andrews MP.
Photo 1: The launch of the newly adapted Primary
School Education Program - attended by The
Hon Kevin Andrews MP, The Hon Martin Dixon
MLA, Kelly O’Dwyer MP, Camp Quality’s Chairman
Kim Jacobs, and CEO, Simon Rountree. Also in
attendance were over 100 of Melbourne’s most
committed Camp Quality supporters from the
corporate and philanthropic world. A second
launch was held in Sydney in February 2015, and
was attended by The Hon Natasha MaclarenJones MLC
http://kevinandrews.com.au/latest-news/2014/11/11/address-camp-quality-puppet-showcase-launch/
Camp Quality is proud to have so many supporters in the world of politics, and is equally proud to work
with them to further our cause.
Collateral Developed for Schools
Below is a snapshot of some of the collateral we developed to help teachers talk about cancer further
with their pupils. There are more details in the Appendix of this submission.
From our resource – “Talking about cancer –
Dealing with cancer in your school community”
19
The Funding Challenges
Overview
Camp Quality has long had a policy of maintaining strong and diverse revenue streams, such as the (by
no means exhaustive) list below:
•
•
•
•
•
•
•
•
•
•
Regular Giving Programs
Corporate Partnerships
Community Fundraising
Signature Events
Sponsorship
Grants
Workplace Giving
Merchandising
Bequests
Major Gifts (philanthropy)
Camp Quality has invested in growing these areas, and is also trialling previously untapped methods,
such as social media fundraising and face-to-face fundraising.
In this increasingly competitive environment, Camp Quality must continue the excellence and ethical
management that has propelled it to become the most highly regarded children’s charity in Australia*.
To achieve the necessary additional funding for the other parts of our Offspring program, Camp
Quality needs to raise the profile of the need, and to have the need validated in a public and definitive
manner. Federal Government funding of our Primary School Education Program would make a definitive
statement on this Government’s commitment to children’s mental health.
Funding the Primary School Education Program
We are asking the Federal Government to fund the ‘bread and butter’ of our Primary School Education
Program. For over 20 years this program was funded exclusively by McDonalds Australia. Since then we
have been actively searching for a partner to assist with the ongoing costs of this, our most far-reaching
program.
The three years since that funding ended have shown that the program is not to the taste of many
corporate partners. Many with a ‘natural’ affinity to children are wary of being seen to be marketing to
children. We are consistently able to find funders for new programs, as it is a vital part of the marketing
of these partnerships that they are able to be seen as ‘pushing the boundaries’. This is not the case with
the Primary School Education Program.
*In the recent 2014 AMR charity reputation index, Camp
Quality was placed 6th, up from 12th place last year. It is now
the highest placed children’s charity. As with last year, it is
also the only charity in the top 15 that does not receive regular
funding from the government.
20
The Cost to Camp Quality
Please find below a breakdown of the costs of the program for 2016, along with an estimate of the costs
for the following two years. For the purpose of brevity, this is an overview of the budget only, for a more
detailed analysis, please contact Camp Quality:
Table 2: showing the estimated cost of the Primary School Program to Camp Quality
State
School
Visits
Hospital Visits
$
FY2016/17
$
FY2017/18*
$ FY2018/19*
NSW/ACT
144
68
285,840
294,335
303,111
Qld
128
56
249,242
256,900
264,820
Vic/Tas
128
40
214,001
220,433
227,080
SA/NT
104
40
221,161
227,755
234,568
WA
104
40
204,766
211,040
217,529
Total
608
244
1,175,010
1,210,463
1,247,107
N.B. For the purposes of this part of the document, we have rounded the figures required.
* Increased costs over the 2nd and 3rd FY represent a 5% increase in costs from a CPI perspective, and a 2.5% increase in staff
costs in terms of Cost of Living wage increases
This means we are asking the Federal Government for just over $3.63 million over the next 3 financial
years. This will allow us to continue developing the program to meet identified gaps in service, and also
to search for funding for these gaps through community and corporate support.
21
Justification for Support
Absence of Alternatives
It has been said before, but it is worth repeating, that there is no other national body that has undertaken
to support children aged 0-13 years who have a parent with cancer.
CanTeen have an excellent Offspring program, but their work is aimed at the age-group above ours, and
deals with information and support in a more adult fashion, which is better suited to the young adults
they support. Much of the research that has gone into our suite of programs is unique in the world, and
that is reflected in the programs themselves.
When it comes to supporting children aged 0-13 years, who have been affected by cancer, Camp Quality
are leaders in the sector, with many of our programs being the first of their kind in the world.
It is also worth noting that although the Federal Government, and indeed the respective State
Governments, provides funding for cancer research, prevention and treatment, there is no provision made
for support of children living with cancer beyond the world of medicine. Camp Quality applauds the leaps
being made in research and treatment, and Australian scientists are world leaders in this field, but this
does not provide for the children who are currently living with cancer or the children have a parent that
will be diagnosed with cancer in the short to medium term.
Much of the traditional focus of cancer is centred around medicine; life becomes consumed with
treatment and the physical consequences of this treatment. Camp Quality focuses on the emotional
and psychological consequences of cancer and the emotional scars left by the illness and harsh
consequences of treatment. We do everything that medicine does not do.
Our research shows that 53% of our shows have been seen by a child who has a parent living with cancer.
This means that over 100,000 children will see this show that helps explain their journey, and helps their
school community understand their position.
Value for Money
Camp Quality’s Primary School Eductaion Program will be seen by over 200,000 children annually, in
every part of Australia.
With the proposed financial backing, Camp Quality will deliver support at well-defined stages of the
cancer journey for children. The investment of just over $3.63million over 3 years will provide a return
that is visible, measurable, and sustainable. This will all be achieved for just under $6 per child.
In 2009, Access Economics Pty Ltd released a study called “The economic impact of
Youth mental illness and the cost effectivenes of early intervention”
They found that in 2009, the cost to the economy of mental illness among 12-25 year
olds was $10.6billion.
Targeted interventions, i.e. early intervention to groups at risk of menal illness (like
anxiety and/or depression), such as children dealing with cancer, are effective and
efficient uses of funding.
22
Alignment with Government Policy
Camp Quality’s Offspring program aligns with many of the Coalition’s keystone policies, as demonstrated
below:
The Coalition’s Policy for Efficient Mental Health Research and Services
August 2013
“Specifically aiming this investment at mental illness in young people is crucial because 75 per cent of all
mental illness manifests itself in people under the age of 25.”
This is why investing in ‘early intervention’ programs like Camp Quality’s Offspring programs is so vital.
“We believe a proper evaluation of mental health programmes is necessary to ensure that the delivery of
services gets to those most in need and that funding is provided to those programmes that have proven
to be most effective on the frontline.
As part of this process, we will identify gaps in both mental health research and workforce development
and training taking into account the needs of not only metropolitan areas, but also the specific
challenges of rural, regional and remote Australia”.
Camp Quality has a national reach, with established and strong networks in hospitals, schools and health
departments nationally.
http://www.liberal.org.au/latest-news/2013/08/30/coalitions-policy-improve-mental-health
The Coalition’s Policy to improve Mental Health
Media Release 30/8/2013
“If elected, we will task the National Mental Health Commission with evaluating all existing mental health
programmes to ensure resources are directed to the most effective services and to identify any service
gaps”.
Camp Quality’s Offspring programs are aimed at one of the largest gaps currently existing in service
needs in Australia.
“Improving the mental health of Australians facing mental illness is part of our Real Solutions Plan to
build a stronger Australia and a better future for all Australia”
Camp Quality will be the ‘fence at the top of the cliff’ to help prevent the slide into mental illness that can
affect so many children who are touched by cancer.
“Mental illness will impact almost half the Australian population over a lifetime. After heart disease and
cancer, mental illness is Australia’s most prevalent health problem”
Our programs will have massive reach to help deal with the prevalence of mental health issues. Our
Primary School Education Program will be seen by over 200,000 children annually.
“Early intervention and treatment has been shown to greatly improve long term health outcomes”
This is why it is so important to build optimistic and resilient behaviours in children as soon as possible.
“A report prepared by Access Economics estimates that the financial cost to Australia of mental illness
in young people aged 12-25 was $10.6 billion in 2009, approximately 70 per cent of which is productivity
lost due to lower employment, absenteeism and premature death of young people with mental illness”
By producing ‘early intervention’ programs to help children nationally, we will be cutting some of this
financial cost out at the beginning.
“The Coalition will ensure mental health resources are being used as effectively and productively as
possible”
For just over $3.63million over 3 years, Camp Quality’s Primary School Education Program represents
excellent value for money.
http://www.liberal.org.au/latest-news/2013/08/30/coalitions-policy-improve-mental-health
23
The Coalition’s Policy to Support Australia’s Health System August 2013
“The Coalition will continue to support and target a range of initiatives to improve areas of specific need
in our health system, including Indigenous health and mental health services.”
Our programs support everyone right across Australia, including children from CALD families.
http://www.communications.gov.au/__data/assets/pdf_file/0016/204064/Discussion_Paper_-_
Enhancing_Online_Safety_for_Children.pdf
The Hon. Scott Morrison MP, Minister for Social Services Media Statement
23/12/14
“The Government is committed to ensuring grants funding supports the area of greatest need for the
community and the most vulnerable people and families in Australia are looked after”
Offspring children aged 0-13 are currently not served by any national body in Australia, and represent a
huge population – 10,000 new children every year.
https://www.dss.gov.au/sites/default/files/documents/12_2014/mr231214.pdf
In Kevin Andrews’ speech to the Australian Research Alliance for Children
and Youth in November 2013:
“…the evidence of the past three of four decades now, is that prevention and early intervention is the
key. And yet as Sarah reminded us, too often, we are funding the ambulance at the foot of the cliff rather
than building or rebuilding the fence at the top. And I hope that in my area of responsibility, one of the
things that we can do over the next few years is to try and reweight the focus to the prevention and early
intervention. Yes we will always need ambulances at the foot of the cliff but if we can build the fence a bit
better, then maybe we can prevent some of that need.”
Camp Quality provides this early intervention, by giving preventative psychosocial support, and building
resilient and optimistic behaviours for children living with cancer. These learned behaviours help to
develop a more independent and stronger attitude to life in the future.
Equity & Reach
Camp Quality has 12 offices in all 8 states/territories nationally, with a large amount of families currently
supported in each. The list below shows the families we support currently. This will grow very quickly as
our Offspring suite of programs becomes active:
With this national reach, we are able to provide support to families everywhere. Our programs are all free
at point of access to our families, and we even provide transport costs to families who may need to travel
to access them. It is expected that our number of families will dramatically increase over the next 3 years,
as the expansion of our services to Offspring families takes effect.
“This puppet show is superb. It delivers a key message in a
manner that is accessible for all. It dispels myths about cancer
and raises the awareness of all people, not just those who are
directly affected by it.”
24
Table 2: Break down of families Camp Quality currently supports
State
Office(s)
New South Wales - 934 Families
Sydney office - 510 Families
Illawarra office - 112 Families
Coffs Harbour office - 119 Families
Newcastle office - 193 families
Victoria - 732 Families
Melbourne office
Queensland - 778 Families
Brisbane office - 608 Families
Townsville office - 170 Families
Western Australia - 341 Families
Perth office
South Australia - 296 Families
Adelaide office
Tasmania - 117 Families
Hobart office
Australian Capital Territory - 227 Families
Canberra office
Northern Territory - 33 Families
Darwin office
Collaboration
Camp Quality works widely with other bodies in the NFP sector, and uses the information exchanged to
make the most effective and efficient use of the funding we receive.
Camp Quality is a founding and active member of Australian Children’s Charities, an organisation
comprising 7 of the leading national children’s charities. This group was formed to achieve several
objectives:
•
•
•
To maintain regular communication about program development, this helps avoid duplication of
services in the sector
To establish and build referral pathways between organisations with different scopes
To share expertise and assist each other without requiring outside resources
Outside of the NFP sector, Camp Quality regularly works with many other bodies, such as schools,
hospitals, social workers, and corporate partners to form policy, guide strategy, receive advice, and gain
referrals.
On the Offspring suite of programs, Camp Quality has worked with the following experts/organisations:
•
•
•
•
•
•
•
Online Survey sent on 13 August 2013 to Social Workers, Psychologists, Nurses in the oncology health
care sector via the national database of Oncology Social Workers, McGrath Foundation intranet
website for their health carers, and Teach NSW Department of Education Psychological services to
School Counsellors. Over 171 were completed online
Evaluation of PSP program sent to 461 schools with 110 responses. Help determine major themes in
rescripting of show, and student and teacher resources
Dr Claire Wakefield – literature review on Offspring
Dr Brittany McGill - Clinical Psychologist Registrar/Research Psychologist – Behavioural Sciences Unit
Kids Cancer Centre, Sydney Children’s Hospital
McGrath Foundation – assisted in convening focus groups for Kids’ App content
Presented to over 80 delegates at the Oncology Social Workers Association conference in Adelaide in
August 2014 on program initiatives for Offspring
Bell Shakespeare Educational for content of Primary School Education Program
25
Camp Quality’s Brand & Reputation
Due to our longevity, Camp Quality has forged strong brand awareness with the Australian public, and
customarily receives strong showings in awareness and trust related polls. In December 2014, Camp
Quality was ranked 6th in the AMR Charity Reputation Index, and was the highest placed children’s
charity.
Other awards:
•
‘Best in Class’ from the International Media Awards (IMA) in the category ‘Charity’ for our “Kids’ Guide
to Cancer” App. The app is designed to dovetail with our Primary School Education Program and was
scored 485/500 by the panel of judges
•
•
Top100 placing in the ARC awards, from over 2,000 entries in 31 countries
1st Place – 2010 PwC Transparency Award for organisations generating less than or equal to $20m.
Shortlisted again in the expanded <= $30m category in 2014
Frater Award winners from 1996-2004, and 2006-2008 (when the awards were discontinued)
PinS (Performers in Schools) Award winners 2010-2012
2007 Readers Digest Top5 Most Trusted Charities
2005 Annual Report won Global Non-Profit Organisation Annual Report
2004 Australian Annual Report of the year
•
•
•
•
•
Camp Quality has a strong presence across Australia, with over 74,000 active and passionate supporters.
Even amongst those who do not support us directly, we have strong visibility. Camp Quality’s brand has
an 80% ‘prompted awareness’ rating across Australia.
Alongside this, we are able to utilise traditional media, to promote our activities for little cost. Last
financial year we secured 2,570 national media mentions, a substantial increase on the previous year’s
total of 1,909. This translated to a total potential audience of 82,448,455 Australians. Camp Quality can
access this media, and gain ‘free’ promotion due to our high level of national trust, and the fact that
traditional media view our programs as entirely sympathetic and uncontroversial. We are able to use our
networks to raise awareness of the plight of our families, and to establish meaningful positive press for
bodies that fund us.
We are also highly visible on social media, with a small but passionate following on the following sites:
Facebook
16,762 Followers
Twitter
5,924 Followers
Instagram
3,080 Followers
Please see the following video for an example of how we are using social media to raise awareness and
uncover new fundraising initiatives:
Please copy and follow this link if you are unable to watch the video now:
https://www.youtube.com/watch?v=03MtTxPk81Q&feature=youtu.be
26
Risk Mitigation
At Camp Quality we understand that every program absorbs a certain amount of risk to move forward,
however after over 30 years of successfully supporting children living with cancer, Camp Quality has
managed to streamline risks and learnt mitigation strategies for every remaining risk. These strategies
would be easily employed by anyone seeking to justify funding Camp Quality.
List of risks:
•
•
•
Insufficient funding for program leads to curtailment of services, and will leave thousands of children
unsupported during a traumatic time
Unsuitable individuals working with children
Ensuring equitable delivery across regional and remote Australia
Mitigation strategies
•
•
Camp Quality is committed to pursuing diverse and strong revenue streams, our many fundraising
activities include this submission
Camp Quality partners with the Australian Childhood Foundation (ACF) and are nationally recognised
and accredited by the ACF. This accreditation acknowledges that we take the child protection of
our children and their families seriously. Our working relationship with the ACF is epitomised in the
following quote:
“I have found a consistently very high standard, commitment and implementation of the Safeguarding
Children Program (SCP) in all of my contacts with Camp Quality staff and participants. In regards to its
commitment to children and youth’s safety from child abuse, ACF would see Camp Quality as a leader
among current children and youth based organisations nationally.” Craig Hemsworth, Manager, SCP at the
ACF
•
Camp Quality has regional and remote support through our extensive network of offices, staff and
volunteers. Our Primary School Education Program tours right across the country every year, and our
recreational programs are available to all, with travel paid for by Camp Quality.
Evaluation Mechanism
Camp Quality does not operate in a vacuum, and is aware that there is a need to constantly evaluate
and update our programs to ensure that funding is being used as efficiently as possible. The following
quote from Kevin Andrews to the Australian Research Alliance for Children and Youth in November 2013
encapsulates our policy of evaluation:
“So often we measure inputs, we measure the widgets of how many people are seen by a service rather
than what effective outcome is achieved in terms of the programs, the prevention and otherwise to
provide it. And if we can move, and it won’t happen overnight, if we can move to measuring outcomes
rather than measuring inputs, then I think we will all achieve something together for the betterment of
the people of this country.”
As an organisation, Camp Quality is committed to consistent evaluation of our programs to ensure
impact, equity and reach. Within this financial year, the large-scale evaluation of the Primary School
Education Program will be published, detailing the ways in which we can improve our offering, and gaps
in our service.
Corporate Governance
Camp Quality takes its responsibility as the custodians of other people’s money extremely seriously.
Transparency, accountability and trustworthiness are at the core of everything we do. We’re constantly
striving to provide the highest quality support for children living with cancer and their families, in the
most efficient way. Camp Quality runs at an extremely high level of efficiency, without sacrificing the
quality of our program delivery.
Camp Quality has set an internal benchmark for administration expenses to be 12% of revenue or less,
and has hit this target every year since 2007.
Our total spend on programming (where the overwhelming majority of our revenue goes) has fallen by
6% on the previous year, while we actually serviced more families in more events and programs than ever.
27
Summary
Camp Quality recommends that the Federal Government supports the Primary School
Education Program to the value of just over $3.63milllion over the next 3 financial years
Thank you for reading the Camp Quality Pre-Budget Submission 2016. Please read on
to find more information and supporting material. If you have any questions about
the information contained in this submission please contact Gary Minford of Camp
Quality on the following details:
Email: [email protected]
Telephone: 02 9876 0568
To watch the video about our Primary School Program watch here:
https://www.campquality.org.au/puppets-video
28
Appendix
Links to Further Information
About Camp Quality generally:
http://www.campquality.org.au
About Camp Quality’s Programs:
http://www.campquality.org.au/public/our-programs.aspx
Camp Quality’s Annual Reports:
http://www.campquality.org.au/public/who-we-are/our-annual-reports.aspx
Camp Quality’s research project:
http://www.campquality.org.au/public/living-with-cancer/familyresearch.aspx
Camp Quality in the Media
Georgia Lowry’s amazing story aired on the major news program, ABC’s 7.30 national
edition, presented by Leigh Sales, across Australia.
It was six and a half minutes of nationwide primetime airtime for Camp Quality.
Georgia was the youngest ever patient to receive a bone marrow transplant at 6
months old. She’s one of a tiny number of worldwide survivors of two bone marrow
transplants and her doctors call her a ‘medical miracle.’
We matched Georgia with Meg, a recently diagnosed girl, at our WA fun day, and Meg’s
mum’s description of Camp Quality’s support is a very powerful piece of TV.
Watch here: http://www.abc.net.au/7.30/content/2015/s4169296.htm
Georgia’s uplifting story also featured prominently on the ABC national online network
here: http://www.abc.net.au/7.30/content/2015/s4169296.htm
29
The Offspring Suite of Programs –
Overview of programs
The Primary School Education Program is part of our developing suite of ‘Offspring’
programs. These can be separated into 3 different categories, each representing the
major needs of children who have a parent with cancer:
• Emotional Wellbeing – Connect Care, Coping Skills for Kids
• Education – Primary School Education Program, the Kids’ Guide to cancer app, the
Young Kids’ app
• Recreation – Family Experiences, Family Fun Days, Kids Camps
Each program is targeted at a specific need that our research has identified, as there
simply is no ‘one size fits all’ option.
Research has shown us that not every Offspring child will need all of these programs,
so they have been designed to cover the most pressing needs for all children, and the
children that require more in-depth support will be able to access it when the programs
are fully developed and funded.
Figure 3 - Take up of programs
Emotional
High risk
children 15% or less
Recreation
Likely to be taken up by 40%or less
Education Programs
To support 100% of the Offspring child
population
30
The Need
There are 130,000 children aged 0-13, who have a parent living with cancer. This
includes parents who; are recently diagnosed, in treatment, in remission, or even
in palliative care. Every day, 27 children, who do not have the benefit of an adult
understanding of cancer, are added to this statistic.
Cancer is still a word that strikes fear into the hearts of people everywhere. For children,
who do not have the ability to decipher the very adult terminology that is suddenly
being used, this can be even worse. Often, without age-appropriate information, the
child can retreat into fantasies that are far worse than reality:
Figure 4: Misplaced concerns of the Offspring child
•
•
•
•
•
•
•
•
Is mum going to die?
Am i going to catch cancer?
If Dad dies, how will we pay
for things?
I can’t deal with this, that’s
what adults are for!
•
Did this happen because I
was bad? Am I being punished?
I’m struggling, but I can’t ask
mum/dad for anything, they
have enough troubles.
Anxiety
Guilt
Depression
Anger
•
•
I can’t cope, this is too much
Everything is falling apart, it’s
only mum and me, and she’s ill.
My life is horrible, and there
is no light at the end of the
tunnel
•
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This is so unfair
What did my family do to
deserve this?
I hate everyone else, their
lives are so perfect, and ours
are falling apart.
The Solution
The following pages provide an overview of each of the 6 programs that comprise our
Offspring suite. For more detailed analysis/information of each program, please contact
Camp Quality on the details provided in the Appendix.
Emotional Wellbeing - Connect Care
Connect Care is a program that already exists to help families who have a child with
cancer. It is aimed at providing a ‘one-stop-shop’ for newly diagnosed families to
understand and access the full range of support available to them. It has been shown
to be effective in terms of providing support to families at the time of greatest stress,
which is often the period shortly after diagnosis. Connect Care will be expanded
gradually over the next 3 years to provide adequate coverage nationally.
Format
Camp Quality will use dedicated support staff (known internally as Family and Hospital
Support Coordinators) to liaise with health professionals at the hospitals, and adult
social workers to build referral networks for the newly supported category of families.
Camp Quality has already begun contacting people who work in these areas across
Australia, to educate them in the services we can provide, and to ensure that they
can accurately reflect our services when they speak to families. Once the Family and
Hospital Support Coordinators have made contact with families, they can guide them
towards the most appropriate support programs for their children during their cancer
journey, and provide relevant information at all stages.
Emotional Wellbeing – Coping Skills for Kids
Coping Skills for Kids is a program that is being developed in conjunction with the
Sydney Child Psychology Centre. It is aimed at children aged 8-12 that are at high risk
of developing anxiety, or struggling to cope with their parent’s illness, and have been
identified and referred to the program by a school counsellor or social worker.
The focus of the program will be to reduce anxiety and promote psychological
flexibility by providing coping skills and building resilience.
Format
The format of the program will be a 6 week long series of focus groups, led by a trained
facilitator. It is planned that the facilitator will come from the area of Allied Health
(psychologist, nurse, counsellor, social workers etc.). This will include dealing with
topics such as:
•
•
•
•
Learning about anxiety and feelings
Linking thoughts and feelings
Normalising feelings about living with cancer
Teaching children how to identify, evaluate and challenge unhelpful negative
thoughts with more realistic and helpful thoughts
• Fighting fear by facing fear
• Confidence building, including learning to be assertive and dealing with teasing/
bullying
The children will attend most of the sessions with their parents who will be able to
learn the strategies too, to help reinforce them at home. They will also learn methods of
communication that will help with their children’s development.
32
Education – Kids’ Guide to Cancer app
Camp Quality launched an app in August 2015 to enable children aged 8-13 years
to learn about cancer in an age-appropriate manner. It benefits children who have
a parent, sibling or friend with cancer but also offers support for those who have a
relative, classmate, neighbour, teacher or other significant person in their life with
cancer.
This custom built app helps to reduce the fear and helplessness that children often
feel when someone they know has cancer, by providing them with age-appropriate
information in an engaging and interactive way, and in a format their generation is both
familiar and comfortable with. This app has been designed to be suitable for mobile and
tablet devices.
This app has been developed in response to our research, and as far we are able to tell,
is the first of its kind in the world. Whilst the app requires internet access to download,
it is fully operational offline afterwards. This is particularly helpful for families in regional
and remote areas, who may not have constant access to the internet. It ties in with
our Primary School Education Program, and young Kids’ App (see below). It can be
immediately downloaded at point of need (e.g. it can be recommended by a healthcare
practitioner/teacher/social worker/Camp Quality staff and the child can be using it 30
seconds later.)
Please follow the below link to download the app:
https://www.campquality.org.au/how-we-help/find-a-program/kids-guide-to-cancer
Education – Young Kids’ App
The Young Kids’ App and Kids’ Guide to Cancer app (see above) would form part of
a complementary suite of educational programs with the Primary School Education
Program. The Young Kids’ App would be aimed at children aged 4-7 years, whilst the
current app is aimed at children aged 8-13 years. (the name is a working title only)
Format
Camp Quality will develop, in conjunction with health and education experts, an app
that is designed to give younger children age-appropriate information about their
parents’ illness. Age-appropriate information is noted as one of the biggest needs in
all our research. This will be a more ‘gamified’ version of the Kids’ Guide to Cancer app
that will provide honest yet uncontroversial information for parents to use with their
children. This will be provided free of charge on all formats as with the older app. It will
be a more expensive app to produce as it will require more ‘game-type’ interactions for
the child to hold their attention. It is also vital to include child developmental experts,
alongside the health and education experts that we used for the previous app. It is also
anticipated to take longer to develop, due to the many ‘moving parts’ involved.
Outcomes
The outcomes will be largely the same as those outlined above for the app.
Recreation – Family Experiences, Family Fun Days & Kids Camps
Many families experience severe financial constraints following a cancer diagnosis to a
parent. These come in many forms:
• Treatment costs
• Cessation or severe curtailing of employment for the patient
33
• Work absenteeism for the partner of the patient to attend treatment sessions etc.
• Increased childcare costs due to reduced capacity of the parents
• If the family do not live near a major oncology centre, there will be costs associated
with dislocation; travel, fuel, phone calls, extra necessities etc.
Whilst some few families may be able to comfortably meet these expenses, the majority
will struggle. Discretionary spending is often the first thing to go. This means that ‘treats’
for the kids, and family time, will be curtailed, at a time when they need them most.
Further research used in the development of the Primary School
Education Program, and to justify funding of the program:
1. Hospital contact for mental disorders in survivors of childhood cancer and their
siblings in Denmark: a population-based cohort study. Conducted by L. W. Lund,
J. F. Winther et al. – Lancet Oncology (2013)
2. Survivors of childhood cancer are known to be at risk for long-term physical and
mental effects
3. Survivors had higher risk of neurodevelopmental, emotional and behavioural
disorders than population-based comparison
4. Survivors, and male siblings of survivors, had higher risk for unipolar depression
5. Male survivors had a 40% increased risk of hospital contact for a mental disorder,
compared to the general population. Female survivors had a 20% increased risk
in the same study
• Increased risk of antidepressant use in childhood cancer survivors: A Danish
population-based cohort study. Conducted by L. W. Lund, J. F. Winther et al. –
Science Direct (2015)
1. Recently we reported an overall increased risk of hospital contacts for mental
disorders…the total burden of depression, however is probably larger
2. Populations comparisons showed the increased risk of use of antidepressants
ranged from 30% for survivors of solid tumours to 50% in survivors of CNS
tumours
• Family routines and rituals when a parent has cancer. Conducted by Buchbinder,
M., J. Longhofer, et al. – Families, Systems, & Health (2009).
1. The psychosocial impact on children when one of their parents is diagnosed with
cancer is significant
2. From diagnosis, children in these families face substantial changes to their family
routine and role functioning, many of which can be unsettling and distressing for
all the young people in the family
• Coping with parental cancer: web-based peer support in children. Conducted by
Giesbers, J., I. M. Verdonck-de Leeuw, et al. – Psycho-Oncology (2010).
In the adolescent and young adult population, it is clear that young people with a
parent with cancer have specific needs, many of which remain unmet.
• How children cope with mother’s breast cancer. Conducted by Issel, L. M., M.
Ersek, et al. – Oncology Nursing Forum (1990).
34
Children take on additional responsibilities while their parent is undergoing treatment,
and may receive less emotional and practical support from both parents during this
time.
• Supporting children of parents who are dying. Conducted by Longfield K., and A.
Warnick. - Canadian Oncology Nursing Journal (2009).
Children who have a parent with cancer are at an increased risk of poor psychosocial
outcomes.
• The Unmet Needs of Emerging Adult With a Cancer Diagnosis: A Qualitative Study.
Conducted by Patterson, P., B. Millar, et al. – Cancer Nursing (2011).
Needs for children with a parent with cancer include; a need for understanding from
their peers, assistance with focusing on their educational/vocational responsibilities,
and age-appropriate information on their parent’s cancer.
• Parents dying of cancer and their children. Conducted by Beale, E. A., D. Sivesind,
et al. – Palliative & Supportive Care (2004).
Given that it is unusual for children, especially young children, to contemplate their
parents’ mortality, they may also adopt a substantial psychological burden as they
process the seriousness of their parents’ disease.
Feedback from the Experts
Below are a series of quotes from Adult Oncology Social Workers, who were informed
of Camp Quality’s move into the Offspring space:
“Age appropriate information about cancer has consistently rated highly in all research- for children with
cancer and children who have a parent with cancer.”
“Lack of information about their parent’s illness and an understanding of sadness of the people in the
family and how they are supposed to behave, are some of the greatest issues facing children who have a
parent with cancer.”
“Education and information is the foundation for a resilient journey forward.”
“From the very beginning, children are at greater risk of psychological distress as they know something is
wrong and do not have sufficient information and support.”
“The aim of any program with young children who have a parent with cancer is psychological flexibility….
flexibility to cope with the uncertainty of their parent’s illness, fear of them dying and skills that will assist
them build resilience for their future journey.”
35
Resources developed to leave behind with teachers:
36
- p3
Cancer in the school community
»
A cancer diagnosis turns life on its head. For many
children, school is a refuge. Apart from the home,
it’s where they spend the majority of their time.
The school environment is key to the child’s social,
cognitive and educational development.
Ways to Help
To maintain a sense of normalcy, some families
choose to keep their cancer diagnosis private. It’s
important that you respect their wishes if this is the
case.
If the family choose to disclose their cancer
diagnosis, the school can support them by
appointin� a mem�er o� sta� to liaise with them.
�amilies usually find it help�ul to �ust have one point
of contact in the school. Having one liaison person
ensures ease of communication and prevents families
from having to repeat themselves when talking to
new sta� mem�ers. �his liaison person is o�ten the
class teacher of the student, the school counsellor or
the school principal; whoever is most appropriate for
the individual family and the school.
In all cases, it is essential the person with cancer or
their parent has given their consent regrading who
they feel comfortable knowing about their diagnosis.
Talking to Kids about
Cancer
�or any school a�ected �y cancer� educatin�
students about cancer can help prevent a variety of
pro�lems. �ive the students opportunities to voice
their feelings or ask questions. They might ask some
di�cult or sensitive �uestions.
Common questions classmates may have:
•
Integrate information about cancer into the
core curriculum- Encourage discussion about
what cancer is, its treatments and possible side
e�ects.
•
Be aware of the potential for cruel comments
or bullying.
•
Advise students on how to talk to a classmate
with cancer
•
Planning cancer awareness activities to teach
students more about cancer. Talking about the
situation can reduce the classmates’ curiosity
and gossip, and may make life easier for the
a�ected student.
•
The Camp Quality Primary School Education
Program has been specifically designed
for this purpose. Information about the free
program can be found at campquality.org.au or
by contacting 1300 665 605
“The other kids could see
something was different.
They’d make games of
pulling off her beanie and
call her ‘baldy’ ... it was not
fun for a kid who’s gone
through what she’d just
gone through”.
A persons understanding of cancer depends on their
age, maturity level and their experience with the
disease. Many children may have heard of cancer
before but often their understanding of the disease is
unclear or ill�defined.
•
•
•
•
How did they get sick?
Can I catch it?
Should I share things that are bothering me?
They seem silly or trivial compared to what my
friend is going through.
What am I supposed to say or do?
Parent of a child with cancer
For schools that have a child living with
cancer, many children may ask:
•
•
Will they miss school?
How can I be a friend to someone with cancer?
1. ‘Cancer in the School Community’ © Cancer Council NSW 2011
2. ‘Understanding the needs of families living with cancer in Australia’ Camp Quality /ARTD Consultants
3. ‘Children with a parent with cancer: Support needs and interventions’ Camp Quality/Claire E. Wakefield
37
- p10
Information about Cancer
The following document is not intended to provide
detailed information on specific types of cancer. For
more information about cancer, please call Cancer
Council 13 11 20 or visit the Cancer Council Website.
Cancer is a disease of the body’s cells, which are the
body’s basic building blocks.
Treatment
•
Chemotherapy
Our bodies constantly make new cells to help us
grow, to replace worn out cells, or to heal damaged
cells after an injury.
•
Radiotherapy
•
Surgery
•
Stem Cell Transplant
Treatment for cancer includes one or more
of the following:
Normally cells grow, divide and multiply in an orderly
way, but sometimes something goes wrong with this
process and the cells grow in an uncontrolled way.
This uncontrolled growth may result in abnormal
blood cells or may develop into a lump called
a tumour. Some tumours are benign, some are
malignant.
The most common treatment for children with
leukaemia is chemotherapy, a mixture of many
different drugs that target and destroy rapidly
growing cancer cells. Children with solid tumours
may require surgery and most will also have
chemotherapy and/or radiotherapy.
There are over 200 different types of cancer in adults
while for children, there are 12 major types of cancer;
Leukaemia being the most common, followed by brain
cancer.
Chemotherapy often extends over many months
while radiotherapy is usually completed within 2 to 6
weeks. When the cancer is no longer detectable, the
person is said to be in remission.
The most common cancers affecting children are:
•
acute leukaemia- a cancer than affects the blood
cells. The two main types are acute myeloid
leukaemia and acute lymphoblastic leukaemia
•
brain tumours- the most common type in
children or gliomas and medulloblastoma
•
Nausea/Vomiting
•
Fatigue
neuroblastoma- a cancer of the nerve cells
involved in the development of the nervous
system
•
Hair loss
•
Weight loss/gain
•
Facial swelling
lymphoma- a cancer that develops in the
lymphatic system. The two main types are
Hodgkin’s lymphoma and non-Hodgkin’s
lymphoma.
•
Mouth ulcers
•
Dry skin/eyes
•
Lowered immunity
•
Abnormal hormonal function (can affect
•
•
•
sarcoma- a tumour that develops in the bone,
muscle or connective tissue
Side Effects
growth and puberty)
•
Continual cognitive difficulties (memory,
learning, attention)
Need more information?
The Kids’ Guide to Cancer app provides
age appropriate information to children
age 8-13 who have a loved one with cancer.
Download it and have a look in class!
www.campquality.org.au/kidsguidetocancer
1. ‘Cancer in the School Community’ © Cancer Council NSW 2011
2. ‘Understanding the needs of families living with cancer in Australia’ Camp Quality /ARTD Consultants
3. ‘Children with a parent with cancer: Support needs and interventions’ Camp Quality/Claire E. Wakefield
38
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