Social work support

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    The diabetes social work service is available to support children and families in dealing with the impact of diabetes on their lives. The support is available while the child is a patient at RCH, from diagnosis through to the time when a young person transitions to adult services. 

    Social workers provide a range of support and assistance that may be needed when a child is admitted into hospital or managing a chronic condition as an outpatient.

    This is done through: 

    • Counselling
    • Supporting families through times of crisis and distress
    • Providing education and information
    • Advocacy
    • Assisting patients and families during periods of hospitalisation
    • Planning for discharge from hospital 
    • Referral to community agencies and supports
    • Liaising with interstate, regional and other metropolitan hospitals
    • Delivering group and support programs
    • Facilitating access to the hospital
    • Accessing practical and material assistance

    Initial diagnosis

    When your child is diagnosed with type 1 diabetes it affects the whole family as this is a period of adjustment. There is significant grief and loss around the diagnosis and this takes time to process. While your child is an inpatient at the RCH you may feel tired and overwhelmed processing all the information you are given to support your child at home. The Diabetes Allied Health Team are here to support you during this stressful adjustment period.

    A new diagnosis of diabetes may create difficult emotional issues for young people. Children look to their parents for support and cues about how to manage their own reactive emotions. This can be difficult for parents as they are also struggling with their own feelings and it is important that parents get support from family members, friends, support groups and the Diabetes Allied Health Team.

    Each child is individual and may experience different emotional responses at different times: Some examples can be:

    • Difficulty coping with the emotional reaction of family members
    • Anxiety about the condition.
    • Fear of needles and multiple injections.
    • Frustration over the daily tasks of managing diabetes.
    • Embarrassment about their diabetes and their friends' possible negative reactions.
    • Difficulty coping with the emotional reaction of family members.
    • Worry about school.

    It is important that once children and young people go home from hospital they return to school/kinder, sports, afterschool care, having playdates etc. as soon as possible. Returning to familiar activities that were enjoyed before the diagnosis brings a sense of relief to children and young people and highlights that they are ‘well’. It can also distract them from being excessively preoccupied with thoughts and feelings about their condition. It allows them to access informal support through friends and family which will be highly beneficial at this time.

    Tips for helping your child

    • Be honest with the child or young person.
    • Be patient.
    • Create a space that is calm at home and at school to carry out tasks.
    • Be prepared.
    • Allow the child or young person time to talk.
    • Encourage them to write down any thoughts, questions he/she is having in a note book and these can be discussed with doctor, Diabetes Allied Health or family.
    • Use age appropriate distraction eg. Bubbles, TV, IPAD, song, game.
    • Try big deep breaths to relax during the injection/finger prick.
    • Reward charts can be helpful for younger children

    Siblings

    Siblings often worry a lot and should be spoken to about the diagnosis of diabetes and what the treatment entails in basic age-appropriate language, so they are prepared and understand as much as possible.

    Siblings of children with diabetes often feel that they get less attention, care and support than their sibling with diabetes. Where possible try and find time to spend with siblings away from ‘diabetes’!!  Young children may like to help so give them a task e.g. “can you get a tissue for your sister?” or “can you get the iPad for them?”

    Juno Health is an initiative set up by doctors to explain medical information to children and have developed a comic book discussing what type 1 diabetes is to siblings. Click here to be taken to this resource.

    Parental support

    Parents go through a wide range of emotions when their children have a chronic condition and these feelings often come in waves, e.g. denial, anger, frustration, sadness, guilt, fear and depressed mood. How parents learn to cope with their own emotions and their own needs will determine how they can best support their child. To care for your child you must first care for yourself!

    Some self-care tips

    • Continue to do things that you loved prior to diabetes diagnosis.
    • Educate others in your family about diabetes management so you can have a break!
    • Talk to family and friends regularly.
    • Adult colouring, yoga, deep breathing, gym, music, reading etc can assist parental wellbeing

    Diabetes and parenting

    As if parenting wasn’t hard enough! When your child has diabetes parenting can be even more difficult and require more planning, routine and involvement in your child’s life. Children and young people can often rebel against this and it is important to have all carers on the same page to support the child and for them to feel safe. Parental anxiety is often transferred to the young person so it is important that you have a space to talk away from your child as not every conversation is developmentally appropriate for a child to hear.

    Your child is still the young person they were before their diagnosis and can achieve goals, play sports, get a job etc. It is important that there are times at home and while out and about that there is no (or limited) ‘Diabetes talk’. Diabetes does not define who they are and this is important to remember. For instance, it is not helpful to say to your child when they first arrive home from school “what is your BGL?”A better question might be ‘how was your day at school?”

    Support for young people

    Sometimes it is helpful to talk to other people who understand what it is like to live with diabetes or be a parent of a child with type 1 diabetes.  Group support often makes people feel less isolated and alone.

    Diabetes Camp

    Read information about Diabetes Camp.

    See the section on camp on the type 1 diabetes page for more information.

    Juvenile Diabetes Research Foundation (JDRF)

    JDRF has developed a support program that provides practical advice and help for people who have been affected by a diagnosis of type 1 diabetes

    Diabetes Victoria

    Diabetes Victoria has information for people affected by type 1 diabetes.

    Chronic illness peer support program at The Royal Children’s Hospital (ChIPS)

    This program is run for young people age from 12-25. The focus is to connect with other young people who get what it’s like to live with a chronic illness.

    Please see the website for further information and if you would like to be part of this program please talk to the diabetes allied health team.

    Other useful websites for people are

    http://www.diabeteskidsandteens.com.au  - It has learn and play games and additional child and teenage friendly ways of discussing type 1.

    http://www.diabetes.co.uk/

    Role models

    Joe Eldridge, Professional Cyclist - Member of Team Type 1 Check out Team Novo Nordisk for some inspiration and tips about diabetes and sports. Team Novo Nordisk is a global all-diabetes sports team of cyclists, triathletes and runners, spearheaded by the world’s first all-diabetes professional cycling team. The team’s mission is to inspire, educate and empower people affected by diabetes

    Dale Weightman, AFL Player – Dale runs yearly presentations at the Richmond football in June each year.

    Ben Cocker- Soccer player.

    Jeremy Irvine, Actor- starred in War Horse movie.

    Sonia Sotomayor- Supreme court judge.

    Jack Fitzpatrick- AFL player.

    Sam Reid- AFL Player.

    Brandon Jack- AFL Player.

    Paddy McCartin- AFL Player.

    Centrelink

    Carers Allowance and Health care card for people under 16 years of age.

    The Carers Allowance is an additional benefit to the Health Care Card provided by the Commonwealth Government. A submission may be made to obtain the Carers Allowance from Centrelink. It is not means tested on income or assets criteria. It is only available for children up to age 16 year of age.

    Applications for the Carers Allowance are made through Centrelink. Eligibility for the Carers Allowance is determined on criteria based on the medical report that can be signed by the Treating Doctor, Credentialed Diabetes Nurse Educator or your local GP.

    To apply for the carers allowance

    • Please call Centrelink on 13 27 17 and request an application for carers allowance and a health care card. These forms are not available online.
    • Centrelink with get some general details from you i.e bank details, address etc.
    • Centrelink will then post out the appropriate forms including a medical form.
    • Please sign the front of the medical form before sending this into you Diabetes Nurse Educator or giving it to your doctor.

    Please send forms to :

    [Your diabetes nurse educator]
    Department of Endocrinology and Diabetes
    The Royal Children’s Hospital
    Level 5
    50 Flemington Road
    Parkville, 3052

    Once completed it can be returned to you to submit with all the forms or if all forms are sent in we can submit it on your behalf to Centrelink.  The process to claim takes about 4-6 weeks.

    Application for a Health Care Card for former recipients of a Carer Allowance Health Care Card

    Centrelink reviews all payments when your child turns 16 years old. Carers allowance is ceased at this point.  If you are a previous recipient of carers allowance and cared for child with type 1 diabetes before they turned 16 years of age you will be eligible to apply for a  ‘health care card for former recipient of carers allowance health care card’. The form that needs to be completed is attached below.

    Ex-Carers allowance Health Care Card

    Health Care Card for a child diagnosed after 16 years of age

    The Health Care Card is a benefit provided by the Commonwealth Government. It is not means tested on assets or income criteria. To qualify for the Health Care Card “the child, because of their disability, requires substantially more care and attention than another child of the same age, without the disability”. Every child under the age of 16 is entitled to a health care card and those over 16 are entitled to a health care card if they are enrolled in school.

    The Health Care Card assists families with the cost of prescriptions under the Pharmaceutical Benefits Scheme (PBS) and the National Diabetes Services Scheme (NDSS) and with some other concessions. With the Health Care Card the holder can purchase medications on the prescribed list at a reduced cost.

    Applications for the Health Care Card are made through Centrelink. Eligibility for the Health Care Card is determined on criteria based on the medical report supplied by the treating team.

    Further information about the Health Care Card can be obtained from any Centrelink office, by accessing www.centrelink.gov.au or by calling 13 27 17.

    Identification

    It is beneficial for the young person to wear some form of identification that says they have diabetes, like a necklace, bracelet or diabetes ID card.  www.medicalert.org.au

    Young people also can put medical details in the health app on their phone and paramedics can access these details without a pin number.  This is important just in case someone doesn't know they have diabetes and they have a hypo or get sick.

    Parking

    Please see information on parking at The Royal Children's Hospital.

    Victorian Patient Transport Assistance Scheme (VPTAS)

    If you live more than 100km away from the hospital, you may be eligible for travel and accommodation assistance from the Victorian Patient Transport Assistance Scheme (VPTAS).