DIPG Support Services
RUN DIPG is a charity dedicated to improving outcomes for patients and families. Discussing options with your doctor, nurses, and oncology team is vital to getting the best advice for you. Below there are numerous services linked to a range of not-for-profits that RUN DIPG recommends.
Do you require Support on Diagnosis?
Rare Cancers Australia is the best place to start.
BUILDING HOPE, together.
Above all else, RUN DIPG is a community. Our work is not achievable without the support, generosity and kindness of those within our community. The below list of services has been curated by one of our beautiful DIPG parents. This comprehensive list details services that may help support your family navigate a DIPG/DMG diagnosis.
TABLE OF CONTENTS
- Government Support Services
- Financial Support
- FAMILY SUPPORT
- TRIAL FINDER
- TRANSPORT SUPPORT
- TREATMENT ACCOMMODATION SUPPORT
- MObility and rehab equipment
- EDUCATIONAL SUPPORT & BOOK CLUBS
- MUSIC & ART THERAPY
- HOLIDAY ACCOMMODATION SUPPORT
- CAMPS
- wish granting
- RESPITE ACCOMMODATION SUPPORT
- HOSPICE and palliative SUPPORT
- FUNERAL SUPPORT
- for when you’re asked by friends & family ‘HOW CAN I HELP’
- INTERNATIONAL SUPPORT SERVICES
Don’t know where to start? Contact our friendly team and we’ll come back to you.
RECOMMENDED SUPPORT SERVICES
Government Support Services
Services Australia Carer Allowance
This is a supplementary fortnightly payment you may be eligible for if you care for someone who needs daily support for at least 12 months or has a terminal medical condition.
Carer Allowance is $153.50 fortnightly.
To get this payment, both you and the person you care for need to meet some Service Australia rules.
If you care for someone younger than 16 years, Service Australia will send you a Health Care Card. to help with the costs of their medicine and health care.
Child Disability Assistance Payment
This is annual payment if you get Carer Allowance when looking after a child with disability or medical condition.
The Child Disability Assistance Payment is an automatic annual payment of up to $1,000.
You don’t need to claim this payment. You just need to be getting Carer Allowance for a child younger than 16 for a period.
Services Australia Carer Payment
This payment can help you if you provide constant care to someone who needs care for at least 6 months. This payment is also if you’re caring for someone at the end of their life.
You can care for one or more people, in your house, their home or in hospital. If you care for more than one person, read about caring for multiple people.
The amount of Carer Payment you get depends on your personal circumstances. This includes any income you or your partner get from employment.
You may still get Carer Payment if you take time away from caring for up to 25 hours a week to work, study or train.
Service Australia Carer Supplement
An annual payment if you have caring responsibilities and get certain carer payments.
This is an annual payment of up to $600, paid automatically if you get:
- Carer Allowance
- Carer Payment
You need to be getting one of these for a period to be eligible for Carer Supplement
This payment doesn’t add to your taxable income.
You don’t need to apply for Carer Supplement. If you’re eligible, we’ll pay it straight into your bank account.
Service Australia Carer Adjustment Payment
This is a one-off payment to support families in financial hardship after a catastrophic event affecting a child younger than 7.
This payment is for you if you give full time care to a child younger than 7 who has been affected by a catastrophic event. Catastrophic events include diagnosis of a severe medical condition, such as childhood cancer.
The amount available is up to $10,000 for each child in a catastrophic event. How much you get depends on your family’s circumstances.
You must claim within 2 years from the first time a doctor diagnoses your child’s condition.
You’ll also need to:
- be getting Carer Allowance for your child
- have a very strong need for financial help
- provide full time care for at least 2 months following the catastrophic event.
To get this one-off payment, you and your partner must not be able to get an income support payment from us. This includes Carer Payment and JobSeeker Payment.
If you or your partner become eligible for an income support payment after the catastrophic event you may be able to claim Carer Adjustment Payment for the period between the event and when the income support payment was paid.
National Advocacy Service
The Cure Brain Cancer Foundation and Peace of Mind Foundation are proud collaborative partners of the National Advocacy Service, which directly assists families with accessing support services including the National Disability Insurance Scheme (NDIS), Centrelink and other government programs.
The service launched in 2021 and are here to help you with:
- General information & advice (online, phone or face to face)
- Connecting you to local support services/contacts within your region
- Applying to the NDIS, Centrelink, Carer Gateway, etc
- Sending you a copy of ‘The Survivorship Diary’ – a new brain cancer resource
If you require the services above or are seeking services for your specific needs, we would love to hear how we can help.
Travel Support for Isolated Patients
IPTAAS is the Isolated Patients Travel and Accommodation Assistance Scheme. This is a NSW Government scheme providing financial assistance towards travel and accommodation costs when a patient needs to travel long distances for treatment that is not available locally. The Isolated Patients Travel and Accommodation Assistance Scheme is a NSW Government Initiative.
Please check with your local state or territory government for specific assistance for your location.
Financial Support
Red Kite Financial Assistance Program:
Redkite’s Financial Assistance program can help families pay for everyday expenses and for some of the unexpected costs caused by childhood cancer. This program is for parents, guardians, and carers of a child with cancer, or independent teenagers (aged 16-18) diagnosed with cancer.
What can Redkite pay for?
- Essential household bills such as mobile phone bills, electricity, and internet.
- Car registration and insurance.
- Rent and mortgage.
- Accommodation for treatment, like hotel costs.
- Groceries and petrol.
When can funds be accessed?
From the time of diagnosis until 12 months after treatment ends.
Levels of Support
New Diagnosis Assistance • $150 – One-off payment
For families within 6 months of initial diagnosis. Use on Coles Grocery Vouchers or Coles Express Fuel Vouchers only. Funds available for 12 months.
Primary Financial Assistance • Upto $750/yr
For families under financial hardship. Available through an online assessment on myRedkite. Use up to $500 on Coles Grocery Vouchers or Coles Express Fuel Vouchers. Funds available for 12 months. Eligible families can re-apply once each year.
Higher Financial Assistance • $850/yr
For families under severe financial hardship. Available through a phone assessment with a Redkite Social Worker. Use up to $500 on Coles Grocery Vouchers or Coles Express Fuel Vouchers. Funds available for 12 months. Eligible families can re-apply once each year.
Brain Child
Brain Child provides emergency financial relief to families across Australia whose child has been diagnosed with a brain or spinal cord tumour.
- You will have a travel wallet sent to your hospital or posted directly to you by registered mail containing food and fuel vouchers.
- You will be able to send utility invoices to us by email and they will be paid directly.
- You will be able to request further food and fuel vouchers by email or post.
- Each family has access to the same pool of money and this is available until the total is reached or 2 years have passed since your child was diagnosed.
Please speak with your hospital social worker or welfare officer and ask them to send a referral of consent to [email protected] (Keep a copy of this consent for information.)
Email [email protected] directly and tell us your story and hospital contacts so that we can confirm your child’s diagnosis.
Better Tommorrow’s Program
Young people need to know that their tomorrows will be better and Brainchild Foundation have created the Better Tomorrows Program for all young people aged from 0 to 24 years of age who have been diagnosed with a brain or spinal cord tumour across Australia.
Alongside the government support that is offered through NDIS, the GP plans that may be accessed and the rehabilitation teams that are in place Brainchild Foundation has developed the Better Tomorrows Program to ensure all eligible families are linked to support and no young person falls through the gap.
If therapy such as physiotherapy, occupational therapy, speech therapy or psychological counselling are required we have developed a third-party agreement to cover the gap and ensure the family are not out of pocket. If tuition support is required as your young person returns to school this is also available.
Tuition will always be our cornerstone but adding the therapies strengthens the improvements that each young person may make and provides greater support to the families. The financial aid provided to each family will be the same. Progress and outcomes will be monitored from both the therapist/tutor or family. Case by case assessments will look at adding another package to the family, if requested.
LEILA ROSE FOUNDATION
The Leila Rose Foundation provides specific support for families affected by rare childhood cancer. Applicants who meet the following ‘Guidelines for Assistance’ may be eligible for assistance:
- Children 14 years and under of age at diagnosis.
- Australian Citizenship.
- Cancer incidence < 5%, as per the document “Childhood cancer incidence in Australia, 1983 -2006” by the Cancer Council Queensland.
To be eligible patients will have been diagnosed with a rare childhood cancer. Rare childhood cancer is defined as having an incidence equal to or less than 5% of all childhood cancers in Australia.
Up to $2500 per year for up to 2 years Essential Living Costs Local Medical and Allied Health.
Peace of Mind Foundation
Providing financial support so families can focus on family time. To help cope with loss of income and medical expenses, we offer small financial aid grants to help provide financial support where needed. Whether it be helping to cover the costs of medications, hospital parking or even just paying an electricity bill.
Superhero Foundation
Superheroes Foundation is committed to assisting as many families as they can. Small Financial Grants are available for those experiencing financial hardship.
CHILDHOOD CANCER ASSOCIATION (SA, NT, Regional Victoria and Regional NSW)
The Childhood Cancer Association recognises that when a child is diagnosed with cancer, this can place extra financial pressure on a family. Limited financial assistance is available to families who are experiencing financial hardship as a result of a childhood cancer diagnosis in the family. Financial assistance covers bills such as utility bills, car registration and Ambulance Cover. This support is coordinated through your Social Worker at the Women’s and Children’s Hospital Adelaide.
BRAIN WAVE
The application is to be completed by a treating health practitioner for items or services relating directly to the child’s brain illness or injury, and/or impact on the family resulting in emotional, social, or financial hardship.
Products and services will be considered where alternative funding sources are not available and are deemed beyond family’s capacity to meet.
Please ensure that you have the following items ready before you begin filling out this form:
- Support letter saved as PDF, doc. or docx file
- Quote saved as a PDF, doc. or doxc. file
Kids with Cancer Foundation
Kids with Cancer Foundation provide financial assistance to families from funds held in trust that have been donated by the public through direct donations, bequests & fundraising. Families that find themselves in financial stress resulting from their child’s cancer diagnosis can apply to access our funds.
You are eligible if:
- Your child is diagnosed with a form of cancer
- Your child is between the ages of 0—18yrs of age
- Your child is in treatment in a children’s hospital
- Your financial situation has been impacted due to a child’s diagnosis
- Your bills are incurred “after” diagnosis
- You do not have a GoFundMe or MyCause page
They can help with:
- Household bills like gas, electricity, water, rates, strata fees, insurance etc
- Rent through a Real Estate Agent & mortgage payments (non-investment properties)
- Car registration, CTP green slip, insurance, repairs, services, tolls, roadside membership
- Phone and internet
- Childcare and school fees
- Funeral support
FAMILY SUPPORT
PATIENT SUPPORT FOR RARE CANCER
Rare Cancers Australia Ltd (RCA) is a charity whose purpose is to improve the lives and health outcomes of Australians living with rare and less common (RLC) cancers. RCA has a number of key areas of focus: Creating a Patient Community, Advocacy, Patient Support Programs, Fundraising, Treatment & Research along with Early Diagnosis.
HUNTER CANCER HUB
The touchpoint between those impacted by cancer and those who can offer support. Located Unit 10D, Bradford Close Kotara, NSW 2289 supporting Hunter, Lake Macquarie and Central Coast families. Ensure to register prior to visiting.
CHALLENGE
The Challenge Family Centre (West Melbourne) is an open and supportive space where families living with childhood cancer can access an extensive range of non-medical support services including playgroup, art therapy, music therapy and massage alongside an extensive resource library.
CAMP QUALITY
Family Experiences provide a special treat where the whole family can have a laugh, reconnect and make happy new memories away from the stresses of cancer treatment.
Learn more about Family experiences!
Camp Quality understands the importance of bringing positivity, fun and laughter back into the lives of families dealing with the trauma of cancer, through their Family Fun Days.
CANCER HUB
Cancer in the family brings immense challenges. Finding support shouldn’t be one of them. Cancer Hub is here to help families impacted by cancer more easily access the practical and emotional support they need. Get in touch and we’ll look after the rest.
TRIAL FINDER
DIPG.ORG
Many researchers are working hard to develop new treatments for DIPG/DMG.
To date, no therapies are available that provide a long-lasting cure for this disease. As new treatments become more readily available, parents will be given additional opportunities to enroll their children in clinical trials. Parents who are familiar with study design terminology and who have a basic understanding of the purpose of clinical trials are better equipped to make informed treatment decisions. Every child is unique, and treatment decisions are also unique to individual children and families.
Sign up for customized daily email notifications about the trials you DIPG/DMG trial you care about.
TRANSPORT SUPPORT
Carer Gateway (Aust Govt)
You may be able to get help with getting around, including transport services for you and the person you care for, and free or subsidised (cheaper for you) public transport and taxis. Each state and territory has taxi vouchers and subsidies for people with disability and their carers.
Childhood Cancer Support (Brisbane)
Free transport service for residential families.
We understand that getting around Brisbane can be challenging. That’s why Childhood Cancer Support provides a free transport service Monday to Friday, for our residential families.
This includes:
- Queensland Children’s Hospital transfers
- Airport transfers
- Grocery runs on request
Very Special Kids
Very Special Kids provides much-needed respite for children at Very Special Kids House in Malvern. If you live regionally, Very Special Kids know getting here can sometimes be a stumbling block. So, they are here to make life a little bit easier.
Fortunately, they have partnered with the Royal Flying Doctor Service (RFDS) to safely transport your child from door-to-door at no charge to you.
An RFDS driver will pick up your child from your house. You are welcome to accompany them on the trip if you would like. For additional piece of mind, a Very Special Kids nurse or personal care worker will be onboard to ensure your child or young person receives quality care during the trip. The same support is provided when it’s time to return home.
TREATMENT ACCOMMODATION SUPPORT
RONALD MCDONALD HOUSE
Ronald McDonald Houses are located within footsteps of major women’s and children’s hospitals across Australia. Our Houses provide a homely and inviting place to stay for parents, guardians, carers and their siblings while their child is undergoing treatment in a nearby hospital.
CHILDHOOD CANCER SUPPORT (BRISBANE)
Childhood Cancer Support provides accommodation and services free of charge to all regional paediatric oncology families.
We are committed to providing our families with stability, a caring community and support during their child’s cancer journey.
We give the best gift of all to seriously ill children with cancer – their loved ones.
Our families can stay in our accommodation for as long as they need – 1 week, 1 month, 6 months, 1 year or even longer. We will be here to support you every step of the way.
Our recently renovated accommodation facilities are family focused, homely and provide each family with their own –
Fully furnished, self-contained unit (1, 2 or 3 bedroom), Fully equipped kitchen, Lounge/TV room, Free laundry facilities.
Ability for extended family and friends to visit/stay
LILIER LODGE ACCOMMODATION DURING CANCER TREATMENT – WAGGA WAGGA
Lilier Lodge provides a warm and supportive home away from home for cancer patients who travel long distances for treatment at nearby facilities in Wagga Wagga, NSW.
Fight Cancer Foundation (Victoria)
Fight Cancer Foundation’s patient accommodation centres provide a stable, comfortable and welcoming home away from home, relieving patients and their families of some of the financial and emotional burden caused by cancer.
Childhood Cancer Association (ADL)
The Childhood Cancer Association provides accommodation to country and interstate families who are required to travel to Adelaide to undergo treatment at the Women’s & Children’s Hospital.
MObility and rehab equipment
Brainwave
Brainwave’s Equipment and Therapies Program assists children with their recovery by providing specialist mobility and rehabilitation equipment and access to allied health therapies. Brainwave responds to a range of requests and are proud to have supplied essential equipment to our families.
- Lateral stability suits
- Mobile feeding devices
- Specialised tricycles
- Bath seats and benches
- Head support collars
- Walking frames
- Car harness systems
- Standing frames
- Air pressure mattresses
Childhood Cancer Support (Brisbane)
EDUCATIONAL SUPPORT & BOOK CLUBS
Red Kite
Your local library might not have any books on childhood cancer… but Red Kite do! We’ve got more than 80 books about all kinds of aspects of the cancer experience including strong emotions, communication challenges, and treatment that you can borrow for free. Some books are for little kids, others are for teenagers. We’ve even got books for grown-ups. Give them a call and they can talk you through the different titles and help you choose.
RONALD MCDONALD LEARNING PROGRAMS
The Ronald McDonald Learning Program assists school-aged children with serious illnesses and injuries to catch up on missed education following treatment and recovery. Providing a suite of educational support services, including therapy sessions and one-on-one tutorials with experienced teachers, our Ronald McDonald Learning Program is tailored to students’ individual needs. We aim to build each child’s confidence and self-esteem in preparation for their return to the classroom. All services are free to families thanks to funding from our generous RMHC supporters
CAMP QUALITY
Empower children with knowledge and compassion by inviting the beloved Camp Quality Puppets to your school. Our one-hour FREE engaging program delivers age-appropriate cancer education, dispels myths, and reduces bullying.
BRAIN CHILD
One of the support programmes offered by Brainchild Foundation is a Tutoring Scholarship for students returning to school on completion of treatment. We offer one hour of tutoring a week for 40 weeks with a private tutor to assist the student to regain lost lesson time and to strengthen the areas of learning affected by their tumour and treatment.
To apply for a tutoring scholarship please fill in a student registration form and Brain Child will be in touch as soon as possible to discuss options for your child. Applications for students to age 24 will be considered.
FEEL THE MAGIC GRIEF SUPPORT
Feel the Magic is an Australian charity providing early intervention grief education programs for kids aged 7 to 17, who are experiencing pain and isolation due to the death of a parent, guardian, or sibling. These evidence-informed programs have been developed by a clinical psychologist and are delivered by trained professionals.
MUSIC & ART THERAPY
CHALLENGE
Challenge offers individual and group music therapy sessions with a registered music therapist, who tailors musical experiences to meet the needs of each child.
You can complete an expression of interest form online. If you require more information, please contact us.
ROBERT CONNOR DAWES FOUNDATION
The Robert Connor Dawes Foundation offers blocks of 10 in-home or online music therapy sessions to children and young people 25 years and under, Australia wide, who have been diagnosed with a brain tumour. The application process is straightforward – simply visit our website and complete the confidential referral form. We will then make contact to link you in with a Registered Music Therapist (RMT) who will schedule your first session!
RED KITE
Music therapy gives kids a chance to express themselves and explore their feelings. It helps them explore and manage difficult as well as happy emotions, and even find some fun. It also helps them manage the stress and anxiety that comes with procedures like MRI and CT scans. For some children, these hospital procedures are so stressful they need to have a general anaesthetic before anything else and for some of these kids music therapy can help to where they don’t need the general anaesthetic.
HOLIDAY ACCOMMODATION SUPPORT
CHALLENGE
Free holiday accommodation is available to Challenge families in a variety of locations in Victoria and Australia. This is a great way for families to spend quality time with each other, while also enjoying a break from the clinical routine of life with cancer.
VERY SPECIAL KIDS
At Very Special Kids we offer families two free holiday accommodation options to take a break and spend quality time with each other.
Owned and managed by Very Special Kids, Glen Osmond Farm is just over an hour north-west of Melbourne. Across the other side of the state, Annie’s Cottage is offered exclusively to Very Special Kids families by its generous owners/hosts.
CAMP QUALITY
Family Getaways are designed for any Camp Quality family to take a break from hospital, or after treatment, and reconnect as a family for a restful stay in holiday-style accommodation. Everything is taken care of, giving you and your family quality time together.
Currently, Camp Quality has 15 Family Getaways are located across Australia.
CAMPS
Camp Quality
Camp Quality Family Camps give back some of that precious time. It’s a much-needed opportunity for families to reconnect with each other and share the ongoing experiences they face with others in a similar situation.
These wonderful camps not only help families develop resilience towards their cancer experience, they often help forge lifelong friendships, too. Camp volunteers are on hand to help parents relax by keeping their kids entertained and safe.
Family Camps also support kids impacted by the cancer diagnosis of a loved one, whether it’s a parent, a carer or a sibling, as their needs can often be overlooked, and they sometimes miss out on moments of carefree childhood fun.
Challenge
Challenge has a vast range of camps, tailored to different age groups and interests. If you have any further questions, please do not hesitate to contact us.
BRAIN CHILD
Brain Child Family Camp is a weekend full of free fun and friendship for the whole family held in a beautiful rural Southeast Queensland setting in June each year. Camp is open to any family of a child/teenager (up to 17) with a brain or spinal cord tumour who has been referred to Brainchild Foundation by their hospital team.
BRAIN WAVE
Brainwave’s Camps are run over one and two days for families who have a child with a brain illness or injury. The camps were developed as part of Brainwave’s Care Program. At Camp Brainwave, families enjoy games and activities for all ages and abilities. Families can reconnect in a safe, respectful, and supportive environment.
BEAR COTTAGE
It’s difficult to imagine how isolating it is for children to be faced by an uncertain future, so Bear Cottage have organised a number of innovative camps to bring these vulnerable children, the siblings and parents together.
Bear Cottage holds specialised camps for children, their siblings, parents and even a Mum’s Boot Camp, Dad’s PitStop Camp and Grandparent’s Camp to regroup, recharge and share experiences.
wish granting
Make a Wish
At Make-A-Wish, every child’s Wish Journey is carefully planned and delivered to create a positive, lasting impact on the lives of not only sick kids themselves, but also their families and communities.
Starlight Foundation
From the moment a child is told their Starlight Wish is to be granted the excitement begins. Dreaming, planning and talking about the wish is a great distraction from treatment and surgery. It’s the light at the end of the tunnel that lifts spirits and brings families together.
Each child is unique and so is each Starlight Wish. Designed to suit the specific needs of each child, Starlight Wishes come in all shapes and sizes – from travel wishes, hero wishes, experience wishes, gift wishes…the sky’s the limit!
CHALLENGE
Challenge is able to help families by organising tickets to most major entertainment, sporting and cultural events. During treatment kids still want to be able to do the same things as their friends, although this may be difficult at times. A suppressed immune system often means they are not able to sit with the general public to enjoy a concert or sporting match, and it can be a strain financially to purchase expensive tickets only to find you are stuck in hospital when the date finally arrives.
Thanks to our close relationships with promoters and venues, we are often allowed access to ‘safe’ areas such as corporate boxes, where our kids and families are able to enjoy a performance away from the general public.
Challenge has been able to provide tickets to shows such as Harry Styles, Ed Sheeran, Billie Eilish, Justin Beiber, Taylor Swift, Pink, the Wiggles, Disney on Ice, AFL games, Australian Open Tennis, Theatre Productions, Melbourne Zoo, Sea Life, Lego Land and more.
We ask that families let us know if there is a football game, concert or show their child would like to attend, and we will do our best to organise tickets.
For further information regarding ticketing or to request tickets, please contact us via the button below or call the Challenge office on (03) 9329 8474.
RESPITE ACCOMMODATION SUPPORT
RONALD MCDONALD FAMILY ROOMS
Our Ronald McDonald Family Rooms are located inside major hospitals and are exclusively for the families of children undergoing treatment in a nearby ward. Run by our friendly volunteers, our Family Rooms are welcoming spaces where you can take time out from the clinical environment of the wards, have a tea or coffee, freshen up with a shower or find a quiet space for a much-needed nap. Our Family Rooms also have dedicated play areas so the siblings of seriously ill children can have a bit of fun.
BRAINCHILD
Brainchild Foundation would like to give you the opportunity to unwind, relax and make some happy memories with your family at a beautiful retreat resort on the beach.
If you have a child that is currently in treatment or who has recently completed treatment for a brain or spinal cord tumour.
All bookings are free of charge for up to 4 nights (outside of school holidays and subject to availability), so enquire now to recharge those tired batteries and have some family fun at the beach.
CHILDHOOD CANCER ASSOCIATION
The Childhood Cancer Association provides respite accommodation in Inman Valley is available for families who have a child with cancer or who have lost a child to cancer.
HOSPICE and palliative SUPPORT
BEAR COTTAGE
Bear Cottage is a children’s hospice – a very special place that is dedicated to caring for children with life- limiting conditions and their families. Bear Cottage believe that life, however brief, should be enriched, enjoyed and celebrated. Bear Cottage is a home full of special moments and cherished memories. Here, life is for living.
Families who care for a child with a life-limiting condition often do so around-the-clock for many years. Bear Cottage understands that this can be incredibly isolating and impacts greatly on the emotional, financial and physical wellbeing of the whole family. Time spent with at Bear Cottage can alleviate some of these challenges.
Parents and siblings are welcome to stay with their child in our home-like environment. Alternatively, children can be left unaccompanied so that parents and carers can take a much needed break. A stay at Bear Cottage is exactly what each family needs it to be.
Facilities include:
- Individual children’s rooms
- Family suites
- Multi-sensory room
- Sensory garden
- Beautiful gardens with ocean views
- Spa
- Multimedia/games room
- Wheelchair accessible play areas
- Parents retreat and quiet area
- Commercial kitchen and dining room
- ‘Clifton Gardens’ – our end-of-life room
For a child to be admitted to Bear Cottage they must be under 18 years and have been diagnosed with a life-limiting illness. By life-limiting we mean, that the child will not survive into their adult years. Referrals can be made by anyone involved with the child and family, including medical officers, community nurses, social workers or the family themselves.
- Initial referral is taken by the Clinical Nurse Specialist and the child’s condition is discussed.
- Following this both medical and family referral forms are sent to the family or the team most involved in the child’s care.
- Once Bear Cottage receives these completed forms the referal is discussed at the weekly intake meeting.
- The family are informed of the outcome following the meeting and if accepted, a booking can be made at this time.
Emergency referrals can be made at anytime by contacting the Nursing Unit Manager or after hours through the nurse in charge. Children requiring end of life care will be given immediate priority & admission can be arranged within hours if needed.
SISTER MARGARET NOONE HOSPICE AT VERY SPECIAL KIDS HOUSE
Short Term Accommodation
Families can stay in our short-term accommodation onsite at Very Special Kids to be close to their child. It is very important to us that you and your loved ones can be together.
During respite care, end-of-life care or if you’ve got medical appointments nearby, our onsite family accommodation – The Sanctuary – keeps you close to your child.
Within the Sanctuary we have two self-contained apartments – the Aviary and the Treehouse – and private outdoor spaces.
End of Life Care
The end of your child or young person’s life can be the most difficult time for your family. At Very Special Kids we provide end-of-life support focused on choice, comfort and creating memories.
Our multidisciplinary team is here to provide practical, spiritual and emotional support that aims to meet the cultural needs unique to your family.
Our skilled clinical care team of nurses, on-call doctors, allied health and personal care workers will ensure your child is as comfortable as possible through pain management and symptom control.
We will listen to you and your child to help you make well-informed choices about care, treatment and end-of-life wishes.
We have onsite family accommodation to book, making it easier for you to be with your child during their final moments.
HUMMINGBIRD HOUSE (QLD)
Hummingbird House provides care and support for children or young people with a life-limiting condition, who are not expected to live into adulthood as a result of their medical condition. As a child and family centred service, Hummingbird House care and support extends to a child/young person’s whole family, with specific programs designed to support parents/carers, siblings, grandparents, and more. Children and young people most likely to be accepted to Hummingbird House service include those with:
- Life-threatening conditions, for which curative treatment has failed or lead to serious complications
- Progressive conditions, for which there are no curative treatment options
- Irreversible but non-progressive conditions causing severe disability, which lead to susceptibility to health complications that could result in death prior to adulthood
- Children who have already died, but would have met the above criteria
Due to the high demand for Hummingbird House service we prioritise children who are fragile, with complex medical needs, who require a high level of healthcare support.
As a state based service, Hummingbird House is open to families from anywhere across Queensland, with services provided in person or via telehealth. Families don’t incur any out of pocket costs to receive Hummingbird House care and support and they strive to provide you with choice every step of the way.
Referrals to Hummingbird House service may be made by any health professional with a provider number, that is involved in your child’s care.
To learn more, or discuss your child’s eligibility for Hummingbird House service, contact their Clinical Care Team on (07) 3621 4364 or email [email protected]
Palliative Care Australia
Palliative Care Australia represents all those who work towards high quality palliative care for all Australians who need it. Working closely with consumers, their Member Organisations and the palliative care workforce, they aim to improve access to, and promote the need for, palliative care.
FUNERAL SUPPORT
RED KITE
Red Kite can contribute up to $1,500 towards the costs of your child’s funeral, depending on the needs of your family. To make it as simple as possible to organise, all you need to do is let them know the name of the funeral director and Red Kite will arrange payment directly.
BRAIN CHILD
Brain Child may provide support of bereaved families through the provision of emergency financial assistance in their time of need, including funeral support.
Services Australia Support
Carer Allowance
You can get Carer Allowance bereavement payment if you’re getting Carer Allowance for an FTB eligible child who dies. We’ll pay up to 14 weeks of Carer Allowance as a lump sum from the date of their death.
Carer Payment
If you’re getting Carer Payment for a child who dies, you may continue to get this payment for up to 14 weeks after the child’s death. This is to give you time to apply for another income support payment, if required. You will also get a lump sum bereavement payment. You’ll also be able to use your concession card for up to 14 weeks after their death.
for when you’re asked by friends & family ‘HOW CAN I HELP’
RED KITE KITECREW
Challenge offers individual and group music therapy sessions with a registered music therapist, who tailors musical experiences to meet the needs of each child.
You can complete an expression of interest form online. If you require more information, please contact us.
INTERNATIONAL SUPPORT SERVICES
DIPG NAVIGATOR
The ChadTough Defeat DIPG Foundation is proud to work together with My DIPG Navigator Funding Partners to provide dedicated Nurse Navigators who offer reliable information to help families understand and manage care for their children.
DIP TOOLBOX
When you or your child is diagnosed with DIPG or DMG, there are a few steps that can provide direction and help with treatment options. The good news is that you don’t have to do it alone!
DIPG TOOLBOX
The DMG / DIPG Resource Network offers a comprehensive source for information regarding diffuse midline glioma (DMG) and diffuse intrinsic pontine glioma(DIPG) research, treatment, and prognosis.
DIPG/DMG REGISTRY
The registry is a central resource of clinical information about DIPG and DMG patients from across the world as well as their imaging (scans), and any available tumor samples. The registry is run by an international network of experts studying and treating DIPG and DMG.
The Brain Tumour Charity
Brain tumours are the biggest cancer killer of children and adults under 40. The Brain Tumour Charity is committed to having the biggest possible impact, for everyone affected by a brain tumour.
