Moving to adult health services for young people with intellectual disability

Transition is the process of moving from children’s to adult healthcare services. It often happens alongside other significant changes, like finishing school.

To plan for transition you and your young person need to learn how to manage the process. All decisions you make with your young person should be centred around their needs, what’s in their best interest and their right to live a full life, while also respecting your role as carer.

Ideally, transition starts early (from 14 years) to give you time to plan and transition gradually. Discuss transition with your healthcare team, specialist doctors or general practitioner (GP) to get started.

Many of the services mentioned on this web page are NSW based, but there might be similar services available elsewhere.

Our Transition Care Service coordinators and the Trapeze service are available to help you through the healthcare transition process.

Other steps to consider include:

• contacting Aboriginal health services if needed

• asking for copies of clinical letters, summary of care, relevant reports and imaging
• speaking to your health professionals about access to medication, equipment or allied health services supplied through a children’s hospital (it might be different at the adult hospital)
• talking to your health professionals about managing emergency situations between your last children’s and first adult healthcare appointment
• a nurse’s time being included in your National Disability Insurance Scheme (NDIS) plan (if your young person has high medical needs or cannot manage their health on their own)
• create a person-centred profile with your health professionals (to provide adult health teams with a guide to managing your young person’s care)
• being aware that long wait times are possible for first appointments in adult healthcare.

In NSW, our Transition Care Service provides practical help with transition planning for young people, their parents and healthcare professionals. Please speak to your GP, healthcare team or specialist doctors about starting to plan for your young person’s transition before contacting our service.

The Sydney Children’s Hospitals Network’s Trapeze service supports young people transitioning from the Sydney Children’s Hospitals Network to the adult healthcare system.

• MyGov provides access to Australian Government services online, such as Medicare, child support, the Australian Tax Office, Centrelink, Australian JobSearch, My Health Record and the NDIS.
• Services Australia delivers payments and services from the Australian Government, and provides advice and access to social, health and child support services and payments. This includes Centrelink, which offers a range of payments to support Australian residents.
  • their Payment and Service Finder on can tell you what payments and services you and your young person might be eligible for.
• The Australian Taxation Office: People with a disability helps people with disability, and there might be tax and superannuation concessions and exemptions available to you and your young person. If your young person receives income (including Centrelink) they need a bank account and tax file number for tax purposes.
• The NDIS provides funding for support and services (including early intervention supports) directly to people with permanent and significant disability. The NDIS can also provide information about:
  • services such as doctors, sporting clubs, support groups, libraries and schools
  • support available from local, state and federal governments.
• The NSW Companion Card allows a person with significant and permanent disability, who has a lifelong need for high level care, to bring a carer free of charge into participating venues and events.

• Family and friends
• Your GP and your young person’s healthcare team members
• Support workers or social workers
• Psychologists or counsellors
• Cultural and language support (through diversity health workers or healthcare interpreters)
• Aboriginal liaison officers or Aboriginal health workers in your local health district or Aboriginal health services.

• Carer Gateway provides practical information, advice, free counselling services, coaching and a community forum to connect with other carers.
• Carers NSW supports carers by providing information, education, training, resources and referrals.

Many agencies provide disability advocate and support services in NSW.

• The Disability Advocacy finder makes it easy to find local services and National Disability Advocacy Program services.
• makes it easy to find local services and National Disability Advocacy Program services.
• The Council for Intellectual Disability works with people with intellectual disability to advocate for your rights.
• The Intellectual Disability Rights Service advocates for and provides a legal centre for people with intellectual disability.

• Ability Links connects people with disability, their families and carers to support you to fulfil your goals.
• Ideas provides people with disability and their carers with independent, reliable and useful information.

Your GP is central to your young person’s healthcare and can connect you to other health providers. Find a GP that meets your needs. Consider appointment availability, accessibility and the availability of quiet space to improve the waiting room experience.

You should first contact your GP when your young person is unwell (except for emergencies).

How to get the most out of your GP

• An annual health check with your GP can help transition planning for your young person’s health needs. Your GP can do an annual health check for carers (looking after your own health is important).
• You can ask for longer appointments so your GP has enough time to examine and discuss your young person’s health.
• GPs can make referrals to psychology and other allied health services. A referral from a GP can mean Medicare funds these services.
• If your young person has a digital My Health Record, encourage your GP to upload your young person’s health information. This means other health professionals can access and use the information to keep your young person well.
• For after-hours GP home visits, that are bulk billed, contact National Home Doctor Service or call 13 74 25 (13 SICK). For free 24-hour health information and advice contact healthdirect or call 1800 022 222.

If your family has private health insurance, check at what age your young person stops being considered a dependent on your policy.

After that age, they might need to have their own policy.

Most medication used in Australia is subsidised by the Pharmaceutical Benefits Scheme (PBS). You need to have a Medicare card to use this subsidy. A Health Care Card (HCC) can lower the cost of medication even more. When your medication costs in a calendar year pass a certain cost, you and your family might be eligible for the PBS Safety Net.

If you got medications through a children’s hospital pharmacy, check if this can continue at the adult hospital with your children’s or adult healthcare team, transition coordinator or hospital pharmacist.

More information on concession and health care cards and the PBS Safety Net.

You will need to return equipment borrowed from the children’s hospital, such as pumps, humidifiers and oxygen tanks, when your young person transitions.

You will need to find out if you can continue to get equipment such as feeding tubes, connections, special feeds or formula from your current supplier, or if you will need a new referral and prescription.

Your GP, healthcare team or specialist doctors can help you apply for these resources or refer you to someone who can help. Check NDIS pathways that could also help.

A young person with intellectual disability’s reproductive and sexual health is a part of their general health and wellbeing, particularly for those who want to explore their sexuality.

Talk to your GP about supporting your young person’s sexual and reproductive health.

Read the disability resources from organisations like Family Planning NSW.

Care provided in an adult hospital or service might be different to what you’re used to. But adult health services recognise the important role family and carers play when a young person is admitted to hospital.

Speak with staff, like the nursing unit manager, about how your young person’s needs are best met. For example, a family member might want to stay bedside during an admission. The hospital’s carer representative or patient friend can help you with this.

Resources to help you communicate with health professionals about your young person’s health care include:

• Admission2Discharge Together
• My Health Matters Folder
• Say Less, Show More.

For health professionals, Top 5 Initiative – Engaging Carers provides a simple process to engage with carers and gain valuable non-clinical information that helps personalise care.

After 18 years, NSW law assumes your young person can make their own decisions. However, your young person with an intellectual disability may need support to make some decisions about their finances, health and life choices.

Things to consider

• Your young person’s wishes should guide any decision-making process. If they can make their own decisions, they should.
• Young people can appoint an enduring guardian (for medical, health and lifestyle decisions) or a power of attorney (for property and financial matters) to manage their affairs while they are alive (for example, when ill or travelling). This can be revoked at any time, as long as they have the capacity to do so.
• If your young person cannot make important life decisions (even with support) then someone else, who has a close and trusted relationship with them, might need to. This person is called a ‘person responsible’.
• A person responsible can be a family member, friend or neighbour. Anyone who is paid to provide support services is ineligible to be a person responsible.
• Sometimes a formal process to appoint a person responsible is needed, particularly if no one is available or there is disagreement about who they should be. The Guardianship Division of the NSW Civil and Administrative Tribunal can appoint a guardian for medical, health and lifestyle decisions, or a financial manager for financial matters.

Helpful organisations and resources

• Aboriginal Legal Services NSW/ACT
• The Department of Communities and Justice’s Capacity Toolkit (information for government and community workers, families and carers in NSW)
• Guardianship Division of the NSW Civil and Administrative Tribunal
• NSW Trustee & Guardian and NSW Public Guardian
• LawAccess NSW
• Legal Aid NSW
• Youth Law Australia (free, confidential legal information and help for young people under 25 years)

It is compulsory for all Australian citizens over 18 years to enrol and vote in local¹, state and federal elections, by-elections and referendums. If you do not, you might receive a fine.

Everyone has a right to vote. Some people might need extra help to enrol and vote. The Australian Electoral Commission’s (AEC) information and easy read guides can help people who have difficulty reading and understanding written information.

If your young person cannot understand the voting process, you can submit a form that claims they should not be enrolled. Ensure the forms’ medical certificate is completed and signed by a registered medical practitioner (such as your GP) before you return it to the AEC.

1. Except in South Australia, Western Australia and Tasmania.

Your young person might need to present proof of identity at times.

The NSW Photo Card provides photo identification for people who do not hold a current NSW driver licence or other forms of photo identification. It is free for young people who have a current Pensioner Concession Card issued by Centrelink (i.e. the Disability Support Pension).

You can use the NSW Photo Card to:

• open bank accounts
• enter licensed  venues (like pubs and clubs).

Schools need to provide adjustments to teaching, learning and assessment activities for students with disability. Your young person’s school should also provide information and support for post-graduation planning, including day programs and supported working environments.

Leaving school is a significant transition point in life. Talk to your school about the annual school leavers’ expo for people with disability in your area, and plan for in your NDIS plan.

Resources that can help navigate this process include:

• National Disability Coordination Officer Program (helps people with disability access and participate in tertiary education and employment)
• NSW Education Standards Authority: Special education
• NSW Department of Education: Transition planning
• TAFE NSW: Disability support services
• Training Services NSW: Apprenticeships and traineeships
• NDIS (can fund post-school services)
• Universities (each university has their own disability support service).