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Fearless, tearless transition

  • What is transition?

    Transition is a coordinated, gradual process involving the patient, their parents or carers, all health care teams at The Royal Children’s Hospital (RCH) Melbourne and adult services including general practitioners (GPs) and community supports and services.

    Moving from the RCH to adult health and community services is a major milestone. As with other transitions in life, such as moving from primary to high school, it should be planned well in advance. This is achieved in close consultation with the patient and family, and all relevant services, resulting in a fearless, tearless transition!

    What will transition at the RCH mean for me and my son/daughter?

    Transitioning from paediatric care may contain many unknowns, and for young people with an Intellectual Disability (ID) and/or Autism Spectrum Disorder (ASD) with mental health or behavioural concerns, there are additional considerations to plan for.

    At the RCH, we have developed a model of care to assist you and your teenager through the transition process. This was designed following extensive information provided by other parents/carers and professionals working in this field, including GPs.

    How will this work?

    Transition stage 1

    When your teenager is 12 years old, you will start having discussions with your paediatrician at the RCH about transition, to ensure that you are engaged with the right services in the community including a GP. Annual or more frequent visits are recommended with your GP as this will be critical to long term care.

    Transition stage 2

    When your teenager is 15 years old, you will be scheduled to meet with the RCH Transition Support Service, in conjunction with another appointment that you may have at the RCH or at an alternative time that best suits you. At this session, your teenager’s transition needs will be discussed (including planning for shared care with visits alternating between your RCH Paediatrician and GP) and information will be provided about transfer/service options, and if required, assistance linking into additional services. Review appointments and follow up with the RCH Transition Support Service will occur as needed or requested.

    Shared Care: Your RCH Paediatrician and your GP will work closely together to co-manage the care of your teenager from 15 years of age, with alternate visits encouraged between your RCH Paediatrician and your GP. This will enable your GP to understand your teenager’s needs, including medication and behaviour management, in conjunction with you and your RCH Paediatrician. Your GP is also well placed to ensure that appropriate referrals are made to other services or supports required in your local community. Please see Shared Care template at the back of this booklet.

    Transition stage 3

    When your teenager approaches 18 years of age, your RCH Paediatrician will ensure that all relevant services are in place in the community to support continued care.

    The RCH Transition Support Service is available to assist with finalising and coordinating your teenager’s transfer to appropriate adult services.

    How can parents and carers help to ensure a successful transition?

    Parents and carers play a significant role in preparing their teenager for the future. Developing a transition plan and ensuring early engagement with appropriate services within paediatric and adult services (as determined with your RCH team/s or GP) and within the community, is important.

    Depending on your teenager’s capacity and ability, it may be appropriate to support him/her with increased participation in their personal care needs and/or with new care providers in the community.

    There are a range of useful resources to assist young people with ID and/or ASD and their parents/carers. Some of these are listed within the ‘Resources’ section of this booklet.

    Here is what one parent had to say about enabling independence in their teenager with ASD:

    "Letting go has remained the hardest of battles because I must fight against my own fears of the ‘what if’s’. Step one is I must be able to get inside his head and find out what he really wants. Step two is I must be willing to set aside my own fears in order to give him his freedom’."

    Source: www.autismsupportnetwork.com/news/autism-freedom-and-bringer-dreams-6785556

    General practitioners – long term support

    A general practitioner is also known as a GP, a local doctor or a family doctor. GPs specialise in general practice medicine and care for many different health problems in all age groups. Some GPs have extra qualifications in specialised medicine. It is important to have your own GP who knows you and has access to your complete medical history to provide you and your family with the best care.

    A regular GP can:

    • Get to know you, helping you feel more comfortable to talk openly about personal issues.
    • Develop an understanding of your health needs so they can decide the right choice of treatment.

    Finding a GP

    • Ask friends or family members who they recommend.
    • Ask your maternal and child health nurse.
    • Find a doctor online www.rch.org.au/kidsconnect under ‘Find a doctor’.
    • Check your government website. In Victoria: Better Health Channel.
    • Yellow Pages – ask clinics near your home if any of the doctors have a special interest in treating children.

    Choosing the right GP

    Ask yourself the following questions when you visit the GP:

    • Do I feel comfortable with this GP?
    • Do they listen to what I have to say?
    • Do I feel comfortable asking questions?
    • Does this GP understand my cultural needs?
    • Can I make a longer appointment time if necessary?
    • Is this GP easy for me to get to?
    • Do the clinic’s opening hours suit me?

    How much does it cost to see a GP?

    Ask when you book if the practice ‘bulk bills’. If you are bulk billed there is no cost to you. If the practice does not bulk bill costs can vary, depending on the practice and length of consultation.

    Making the most of your visit – before the appointment

    • Write down the reason/s for your visit and any questions up wish to ask.
    • Make a list of ALL the medications you are using, including any complementary or alternative therapies.

    During your visit

    Be prepared to discuss your concerns openly and honestly. Write down anything that is important or that you might forget. Ask questions if there is anything you don’t understand.

    Ask your GP if your child would be eligible for a Chronic Care Management Plan. This can help to alleviate additional costs associated with care.

    Resources

    For young people with autism and intellectual disability

    www.autismlaunchpad.org.au
    Information and resources to assist with including guides and checklists decision making and independent living. Useful information for parents and carers too.

    www.mychoicematters.org.au
    Provides workbooks that assist with setting goals, a guide for making big decisions on where to live and where to work.

    www.westernsydney.edu.au/getreadyforstudyandwork
    Practical guide to transitioning from school and provides useful state based contacts. There is a workbook for the teenager and the parent/carer.

    http://picturemyfuture.com
    Assists people with intellectual disability to make good choices using visuals strategies.

    For parents and carers

    General

    Name Description Contact
    Disability Services (Department of Health and Human Services) Intake and Response General enquiries line 1800 783 783
    National Disability Insurance Scheme (NDIS) General enquiries line. Can register with NDIS here. 1800 800 110
    Carers Victoria General information and links for carers 1800 242 636
    www.carersvictoria.org.au
    Working Carers Gateway Information and support for carers with low income and isolated carers who are juggling both caring and workplace demands Email: info@workingcarers.org.au
    www.workingcarers.org.au
    News for carers newsletter (Centrelink) Keeps carers up to date with changes to payments and other useful information 13 27 17
    www.humanservices.gov.au/customer/news/carers
    Victorian Civil and Administrative Tribunal: Guardianship List (VCAT) Applications for guardianship or administration to be appointed 03 9628 9911
    www.vcat.vic.gov.au/case-types/guardianship-and-administration
    Behaviour Intervention Support Service Provides services for people who demonstrate challenging behaviour and focus on training, strategies and support for carers 1800 783 783
    Email:Disability.Services@dhs.vic.gov.au
    www.dhs.vic.gov.au/for-service-providers/disability/specialist-support/behaviour-intervention
    EACH – Family Relationship Support for Carers Operates state wide and offers five free counselling sessions for family members caring for someone with a disability including 7SD 1300 00 3224
    www.each.com.au/service/family-relationship-support-for-carers

    Respite

    Name Description Contact
    Respite Victoria Information about disability respite services across Victoria 1800 052 222
    www.carersouth.org.au/getting-started/what-help-is-available
    Interchange Victoria Provide respite and social support 03 9396 1118
    www.interchange.org.au
    Commonwealth Respite and Carelink Centres (CRCCs) Information and access to services 1800 052 222
    1800 059 059 for emergency respite
    www.dss.gov.au/disability-and-carers/programmes-services/for-carers/commonwealth-respite-and-carelink-centres

    Financial

    Name Description Contact
    Financial Study Assistance Link to the government website for all forms of studying financial assistance 1800 020 108
    http://studyassist.gov.au/sites/StudyAssist
    Caring for someone with a disability Financial assistance and services are available if you provide care to someone who has a disability, illness or is frail aged 13 27 17
    www.humanservices.gov.au/customer/subjects/caring-someone-illness-or-disability
    NDIS – National Disability Insurance Scheme The NDIS provides information and referrals, support to access community services and activities, personal plans, funding and supports over a lifetime 1800 800 110
    www.ndis.gov.au/people-disability
    Disability Parking Scheme Administered by VicRoads and can grant several types of parking concessions based on mobility needs 1300 360 745
    www.vicroads.vic.gov.au/safety-and-road-rules/road-rules/parking-and-clearways/disability-parking
    Victorian Patient Transport Assistance Scheme (VPTAS) Helps rural Victorians with travel and accommodation costs when they must travel long distances for specialist medical treatment 1300 737 073
    www2.health.vic.gov.au/hospitals-and-health-services/rural-health
    Victorian State Concessions Finding out what help you may be eligible for and how to apply 1800 658 521
    www.dhs.vic.gov.au/concessions

    Vocational resources

    Name Description Contact
    Autism Launchpad – ASPECT Transition tool with tips for adolescents and carers,checklists and resource suggestions (contacts could be NSW specific) 1800 277 328
    Email: customerservice@autismspectrum.org.au
    www.autismlaunchpad.org.au
    Victorian Independent Living Centre (Yooralla) State wide service which provides impartial information and advice on assistive technologies 1300 885 886
    www.yooralla.com.au/services/Communication-and-Assistive-Technology/Independent-Living-Centre
    NDIS – School Leaver Employment Supports (SLES) The NDIS will be responsible for funding supports that assist people with disability prepare for, and take part in work 1800 800 110
    www.ndis.gov.au/people-disability/sles.html
    Online tools and Apps Online tools and apps for several disabilities including ASD and ID www.qld.gov.au/disability/apps-tools/index.html
    Disability Services – TAFE TAFEs provide support services to students with disability including ongoing health conditions www.adcet.edu.au/students-with-disability/current-students/disability-services-tafe/#VIC
    My skills A government website to assist in looking for training options www.myskills.gov.au
    Victorian Universities Admissions Centre Information about how to access disability support services at the different universities in Victoria www.adcet.edu.au/students-with-disability/current-students/disability-services-university/#VIC
    National Disability Coordination Officer Program Assists people with disability to access and participate in tertiary education and subsequent employment www.education.gov.au/national-disability-coordination-officer-programme
    Australian Apprenticeships Information about access to apprenticeships 13 38 73
    Email: edline@edumail.vic.gov.au
    www.australianapprenticeships.gov.au
    Job Access Workplace and employment information for people with disability, employers and service providers 1800 464 800
    www.jobaccess.gov.au
    Australian Disability Enterprise (ADE) Meaningful employment for people with significant disability Email: action@ade.org.au
    www.ade.org.au
    Assistive Technology in the Workplace Information about technology that can be used in the workplace by people with disability www.adcet.edu.au/resource/8211/assistive-technology-in-the-workplace
    Australian Youth Mentoring Network National hub for youth mentoring tools and resources 0434 796 934
    Email: info@aymn.org.au
    http://aymn.org.au

    Shared care template

    Shared care between your GP and your paediatrician