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EXCEPTIONAL NEEDS ASSISTANCE PROGRAM GUIDELINES These guidelines apply to all referrers of the program (Allied Health Professionals and Medical Professionals) and all members of the Redkite Services team. Should further information be required on the Financial Assistance program, please contact Redkite on 1800 REDKITE (1800 733 548) or at [email protected] EXECUTIVE SUMMARY Purpose of Redkite’s Financial Assistance Program Redkite recognises the financial and emotional stress that child and Adolescent and Young Adult (AYA) cancer experience places on individuals and families. The Redkite Financial Assistance program therefore aims to support families throughout the cancer journey by providing them with practical assistance to manage their finances and assist with their everyday expenses. TAILORED FINANCIAL ASSISTANCE The Financial Assistance program aims to respond to the varying levels of practical need experienced by children, young people and their families along the cancer journey. Redkite has therefore developed a tailored system of financial assistance which identifies and categorises these varying levels of need to ensure that families and young people are provided with practical assistance that best meets their need and family situation. Under Redkite’s Financial Assistance program, there are three levels of tailored assistance; primary assistance, higher needs assistance and exceptional needs assistance. These guidelines refer to Exceptional Needs Assistance (ENA), for information about primary assistance and/or higher needs assistance, please refer to the Financial Assistance Program guidelines. ELIGIBILITY CRITERIA Financial Assistance is not an entitlement, but is based on the eligibility criteria. In order for a family or young person to access exceptional needs assistance, they must meet the program criteria as outlined below. General Eligibility For a young person or family to be considered for ENA, they first must have successfully applied for (and accessed) Redkite’s Financial Assistance program. Exceptional Needs Assistance (ENA) relates to the rare and severe needs that are beyond what a family or young person could reasonably be expected to manage. Financial need as a standalone criterion is not sufficient to make an applicant eligible for ENA. Applicants must also have a range of Version 2 Last updated 27 October 2016 unique factors. 1 A specific ENA application form needs to be completed with specific details on the exceptional needs. “Rare” means that the level of need would not be expected to occur in more than 1% of the on-treatment, palliative and early bereavement oncology population “Severe” means It is beyond what a family or young person can reasonably be expected to manage after all other available support and advocacy options have been exhausted, including access to an Allied Health Professionals and having accessed funds and support from Redkite’s Financial Assistance program. AND; The wellbeing of the diagnosed child or young person or family is significantly affected as a consequence. Financial need as a standalone criterion is not sufficient to make an applicant eligible for ENA. Applicants must also have a range of unique factors as outlined below. Please note, it is not based on a level of entitlement due to their exceptional need status, but is rather a starting point to determine their overall eligibility. In the event that a family/young person is ‘high needs’ due to financial hardship, the family may be eligible for Higher Needs Assistance (HNA). Please refer to the Financial Assistance Guidelines (HNA criteria, page 8). Examples of factors contributing to exceptional needs To qualify for an ENA grant, there must be a unique factor to indicate their suitability. Some examples of what is considered ‘exceptional’ under the ENA program are as follows: There is something unique about the diagnosed child / young person’s diagnosis or their medical condition, such as the following: - The diagnosed C/YP may be diagnosed with one form of cancer and then have a secondary diagnosis of a different form of cancer - The diagnosed C/YP may have a cancer diagnosis coupled with another medical condition or disability - The diagnosed C/YP may have sustained severe 'rare' side effects from their cancer and / or treatment - The diagnosed C/YP is diagnosed with a rare form of cancer, with treatment options being limited. Necessary medical information must be provided - The diagnosed C/YP has had a rare / unexpected number of relapses of their disease. There is something unique about the family’s medical history, such as the following: - The diagnosed C/YP sibling or their family member has a serious medical condition in conjunction to the diagnosed C/YP which impacts on their ability to care for their family - The diagnosed C/YP or their sibling has an intellectual disability which impacts on the care of both children. - The diagnosed C/YP sibling has been diagnosed with cancer. This could be the same as the diagnosed C/YP which may be due to family genetics or other causal factors, or a different form of cancer. - The diagnosed C/YP sibling is recently deceased (this may be related to cancer, another medical condition, or an unexpected passing) Version 2 Last updated 27 October 2016 2 - There may be mental health issues presented in the parent / guardian of the diagnosed C/YP. This could be related to the cancer diagnosis or pre-date the cancer diagnosis, and this has an impact on their ability to provide and care for their family There is something unique about the family’s/young person’s social situation, such as the following: - The diagnosed young person may be a parent to a young child which impacts on their ability to care for their child. - The parent of a diagnosed C/YP is recently bereaved (this may be related to cancer, another medical condition, or an unexpected passing) NOTE: This is not an exhaustive list – All applications are assessed on a case by case basis Diagnostic Criteria As per Redkite’s charter, Redkite provides support (practical and emotional) to families and young people aged 0-24 who have been diagnosed with any type of cancer, a brain tumour (malignant and benign), or melanoma (from a stage II and above). Definition of Treatment Stages The following treatment stages also determine a family or young person’s eligibility for financial assistance: ‘Active treatment’ – C/YP is currently receiving treatment to cure/remove the cancer including, but not limited to chemotherapy, radiotherapy, maintenance, surgery and transplant*. * Does not extend to treatments that are ongoing infinitum. ‘Off treatment’ – C/YP is up to 12 months post completion of the treatment phase for the cancer. ‘Palliative care’ – C/YP is receiving treatment to relieve symptoms without trying to cure the disease ‘Early bereavement’ – the first 12 months after the death of a C/YP. If you are unsure whether a C/YP has begun or completed active treatment, we advise that you liaise with the patient’s multidisciplinary team to confirm their active treatment and off-treatment date/s. Off Treatment definition As a guide, Redkite defines off treatment as one of the following: The date of discharge following the final cycle of planned chemotherapy as an in-patient The last date the diagnosed child/young person received chemotherapy (including oral chemotherapy) as an out-patient The last date the diagnosed child/young person received radiation therapy The date of discharge following an admission for a bone marrow transplant The date of discharge following an admission for cancer surgery Exclusions to Exceptional Needs Eligibility Under the Financial Assistance program, there are also some exclusion’s to a family or young person’s eligibility. These are set out below: Ongoing and Late Effects Version 2 Last updated 27 October 2016 3 At this stage, the Redkite Financial Assistance program ceases at the one year off-treatment stage, given that it is less intensive than the early and active treatment stage. This therefore excludes the financial costs associated with the ongoing and later effects of cancer treatment and the potential costs incurred from this. Please note: Redkite also does not cover the cost of any treatment expenses, including any complimentary or alternate treatment. Funeral Grants and Bereavement Counselling Under the ENA program Redkite will not cover any funeral or bereavement counselling expenses as we have other grants available to families. Non-Cancer Diagnoses Under all Redkite program areas, Redkite does not support a non-cancer diagnosis. Where some diagnoses may be treated like a cancer, but are not a cancer, they still do not qualify for assistance under any Redkite program area. Some diagnoses that we do not support are: Aplastic Anaemia Hoyerraal-Hreidarsson Syndrome Amyloidosis Cystic Nephroma Haemophagactyic Lymphohistocytosis (HLH) NB: This is not a comprehensive list of diagnoses we do not support – please contact Redkite on 1800 REDKITE (1800 733 548) if you need to clarify a C/YP’s diagnosis and eligibility. Other Assistance Families may be eligible for other forms of financial assistance from other organisations. We encourage social workers to talk to families about all the different types of financial supports that may be available to them, such as: Patient travel subsidies are available through each state government for regional and rural families that have to travel to hospital. The subsidies cover the associated fuel costs, accommodation and other travel costs. Financial assistance from other charities, eg. Leukaemia Foundation. Centrelink benefits. Applying for financial hardship to extend bill payment dates or lower bill costs, or to temporarily suspend mortgage repayments. ABBREVIATIONS AYA Adolescent and Young Adult C/YP Child/Young Person PA Primary Assistance HNA Higher Needs Assistance ENA Exceptional Needs Assistance Version 2 Last updated 27 October 2016 4 DEFINITIONS Family Young Person Refers to family members who are residing in the patient’s home. Family may include, but are not limited to, parents, carers, grandparents, siblings, guardians and partners. Refers to the diagnosed young person who is aged 18-24 years of age. They may be living independently of their family or within the family home. REDKITE: HOW WE CAN HELP Redkite has been supporting children and young people with cancer, and their families, for over 30 years. Redkite recognise the significant impact a cancer diagnosis can have upon individuals, and their support networks, financial circumstances. Redkite provides a tailored Financial Assistance program to cater to the significant needs of individuals diagnosed with cancer and members of their support network such as parents and primary carers. In addition to our Financial Assistance program Redkite also provides: Information and counselling support Telegroups Education and career support Book Club Point-of-diagnosis support packs For further information regarding any of the above services please contact 1800 REDKITE (1800 733 548) or [email protected] Should you wish to provide feedback on the Financial Assistance program, please complete the feedback form on our website: http://www.redkite.org.au/feedback and submit your feedback, comments, suggestions or complaints. Version 2 Last updated 27 October 2016 5