Frequently asked questions for parents
My child has an intellectual disability? Will she/he be transferred to adult care?
Yes. The only difference is that depending on the severity of your son or daughter's Intellectual Disability, some independent skills might not be reached. In this case you would continue to remain an advocate for your child at an adult hospital and to a greater degree. The whole family would undergo transition together in this situation.
When do we need to move to adult health care?
Usually after the completion of Year 12, your son/daughter will be transferred in close consultation with you paediatric health team. Your son/daughter is considered transferred to adult health services after the first appointment at the adult service. Until then, continue to come to the RCH, including the RCH Emergency Department if needed.
How can we get our son or daughter's medical history information from the RCH?
You should be given a summary of your son/ daughter's medical history in a referral letter or Transition Record Summary (TRS) at one of your last consultations at the RCH to keep for your records. A copy of this summary will be sent to the adult health service, a copy will remain on your son/ daughter's medical history and a copy given to your son/daughter and your family. If you would like to access your son/daughter's medical history you will need to go through the Freedom of Information process to obtain this. Contact: Freedom of Information Office on 9345 5156 or 9345 5132 or e-mail:freedom.information@rch.org.au or visit their website:Clinical Quality and Safety, Freedom of Information
We don't get along with our new doctor at the adult hospital. What can we do?
Seek guidance from your GP or paediatric team. Provided you have a summary of your son/daughter's medical history, it is in your and your son or daughter's hands to decide where you would rather be, whom you would rather see, etc. You have the right to 'shop around' to find the most suitable service.
Should I attend appointments with my son/daughter at the adult hospital?
The aim is to try and foster more and more independence in your son/daughter within the limitations of their condition. Discuss this with your son/daughter. It is important to assist your son or daughter to develop skills to self manage their condition and enabling them to spend time alone with their health team is a good way to begin this process.