Transition Care - Resources for Parents/Carers
The Role of Parents & Caregivers | When to Move? | Important Issues in the Transition Process | Recording Important Health Information | Fostering Independence | Looking after yourself | Financial and Medical Decision Making | Financial Help | Person Responsible | Guardians and Financial Managers | Program of Appliances for Disabled People (PADP) & Department of Ageing, Disability and Home Care DADHCThe Role of Parents & Caregivers
Transition to adult health care for young people with chronic illnesses is a process not a single event. Moving from a familiar child environment to adult health services impacts significantly not just on the young person and members of the health team, but parents, caregivers and other family members and friends.
Your child's health care team considers you a vital part of the planning process during transition.
As a parent, your role has been to help your child gradually assume responsibility for their own health care as they develop into an adult. You will find that your role does change from that of being the primary care provider, to providing emotional support as your child matures and learns to manage their own life and health care needs.
This can be difficult for some parents/caregivers. They have said that they feel 'left out' as the staff increasingly talk directly to the young person and ask their opinion, rather than asking the parents. Remember that your adolescent is able to display these independence skills because of your support and help and this will help them become an independent adult.
As a main support provider for your maturing child, you are still able to play a very important role during transition. They will still require your help with many things. They will need to know about their past medical history. You can help them pick a new doctor, talk to them about the timing of transition and continue to teach them about life in the adult world.
If you do need some help remember to ask. You are an important part of the transition process!
When to Move?
Successful transition requires cullaboration, planning and coordination of services and therefore should begin early. Discussions about transition are usually started at the time a young person starts high school.
From a parent/carer's perspective the following issues around timing of the move need to be considered:
- Although most child services have a cut off age for treatment this should be negotiated with the service as part of your young person's transition plan. Developmental age, social maturity and educational stage all need to be considered.
- Capacity of the adult service to provide appropriate care is important. Most adult services do not have schouls on the premises and this may impact significantly on the young person if they need frequent or lengthy hospitalisation.
Important Issues in the Transition Process
The process of transfer to adult facilities requires careful planning around the following issues:
- Selection of new health professionals and building a trusting relationship with the new team
- How and when to say goodbye to the children's team, including how important medical information will be transferred to the new team.
- Selection of adult services (with consideration of location, capacity to manage the condition and access to educational and vocational facilities).
- Guardianship issues (if appropriate) and the role of the parent/carer when the young person is totally dependent
- Issues relating to money and equipment needs; billing, supply of medications and supply of essential medical items and equipment
- Availability of outpatient facilities
- The young person's level of independence and knowledge of their own needs
Recording Important Health Information
Your son/daughter will need to know about their medical history including immunisations, illnesses, operations. For young people with a chronic illness this information is very important to give to the adult health care providers. As your child matures it is helpful for parents to sit down with them and recall and record their medical history for them, especially about what happened in their younger years. Try to write this history down with them.
Many child health facilities provide special health folders for young people with chronic illnesses. Ask your child's medical team for one.
Recently the Department of Health developed the 'My Health Record', a red book similar to the child blue book. This is available from your health service. It provides an easy, concise health record, which can be updated by both patients and health professionals.
Many services are now developing transition packages, which contain information about the transition process and assessments to help you and your son/daughter set goals for transition. We suggest that you discuss transition issues with your health team and ask them to help you access important health related information about your son/daughter's medical management.
We have included a copy of the fact sheet "My Medical History" that is part of the transition information for young people. The fact sheet contains information that most new health professional will require about your son/daughter. Although the table below is directed towards young people, they may need your help with some of the answers, especially the things that happened when they were young. Try to make some time to go through this table before your son/daughter visits their new health care professional.
Fostering Independence
The process of transition usually happens at the same time as you are fostering increased independence in your maturing child. The goal of all parents is to continue to provide emotional support while gradually easing themselves out of the role of direct care provider.
Although 'letting go' may be difficult, especially for parents of young people with a chronic illness and/or disability, it is still important that the young person be encouraged to develop a realistic level of independence for their age, abilities and limitations. Gaining independence is a natural progression in people's development. Parents and other family members are role models for a child at all stages of development. Your son/daughter will learn new skills from your actions.
Some of the skills they may be need in an adult health care setting include:
- Talking with their health care team about their concerns and treatment plan
- Time management
- Handling money
- Stress management and coping skills
- How to access information, resources and equipment
- Knowledge of their condition, medication and other important health information
- Ability to be an assertive and effective advocate on behalf of themselves
- Self care techniques related to daily living activities
- Development of a social life
- Health and wellness knowledge; including nutrition, fitness and personal safety
- Educating professional and clinicians on their medical history and their needs
It is important to give young people lots of opportunities to see these skills modelled for them as well as practice the new skills themselves.
Looking after yourself
Being a parent or carer of an adolescent is a difficult task. As your son/daughter is developing and finding their place in society your role is changing. Being a parent of a child with a chronic illness or condition adds new dimensions and challenges to this stage of development. There is a constant struggle between providing guidance to your adolescent without too much pressure.
Added to this is the need to consider leaving the children's service, which is often a difficult task. You have probably built up a long term, trusting relationship with the health professionals and may feel ambivalent about moving onto another service, wondering if the adult service will be able to meet your son/daughter's needs.
Given that the adult services require the young person to be independent, you may feel 'left out' by the adult teams when they do not volunteer information about your son/daughter's progress. It may be very hard for you to step back and let them and their doctor control their medical path. Give yourself time to come to terms with this.
If you are worried about some aspect of the transition process it is imperative that you raise your concerns with a member of your son/daughter's health care team. If you are not supported it will make it harder for you to positively provide support through the transition.
Financial and Medical Decision Making
18 years old are legally able to control their own affairs. But sometimes people are unable to make decisions about how they will live or how to arrange their financial affairs due to their disability. They need help from others to make these decisions on their behalf. This fact sheets explains the role of decision makers such as a person responsible, a guardian, money managers and financial managers.
Financial Help
The Supreme Court of NSW has ruled that someone is capable of managing their own affairs if they are able to manage more than their household bills now and in the future. You do not have to be able to manage complex financial affairs (Supreme Court of NSW HvH 20/3/00)
There are systems in place to help your son/daughter manage their money if they are finding it a bit difficult. Many people with a disability can be supported to manage their own money. A family member, friend or a disability worker can often assist people with a disability to manage their finances. A family member can become a joint signatory on a bank account. They could also receive Centrelink payment on the person's behalf.
If there is someone acting on someone else's behalf there are strict legal rules for the management of the person's money.
The manager of another person's money must;
- Keep the money in a safe place.
- Not make any profit from being the money manager.
- Spend the money in a way that directly benefits the person.
- Hand back the money if the person asks for it, if they have a basic understanding of the value of money (even if the money manager considers that the person may spend it 'foolishly').
If the money manager breaks these rules they may be committing a crime.
If there are no informal arrangements (family or friends looking after your son/daughter's money) or if these people are not respecting the rules and your son/daughter are not able to look after their own money by his/herself, a financial manager may be appointed by the Guardianship Tribunal.
Person Responsible
Medical and dental practitioners have a legal and professional responsibility to get consent to treatments before treating a patient. If the patient is not capable of consenting to his or her own treatment, the practitioner should seek consent from the patient's 'person responsible'. This is a requirement under the Guardianship Act 1987.
If you are the person responsible for someone who cannot consent for themselves you have the right and responsibility to know and understand:
- What the proposed treatment is
- What the risks and alternatives are
- That you can say 'yes' or 'no' to the proposed treatment
- That you can seek a second opinion.
The health care worker has the responsibility to give you this information and seek your consent to the treatment before treating the person.
A person responsible cannot consent to treatment that the patient objects to or that is considered 'special medical treatment'. This includes sterilisation operations, terminations of pregnancy and experimental treatments.
Guardians and Financial Managers
In most cases when a person is unable to make decisions about how they will live or how to arrange their financial affairs, their family will provide support and make decisions on their behalf. If there is no one available to make decisions, or if a problem arises with providing support, a person can request that the Guardianship Tribunal appoint a formal decision maker.
The Guardianship Tribunal can appoint guardians and financial managers for people 16 years and over who are incapable of making decisions about their lifestyle and financial affairs. The NSW Guardianship Tribunal can appoint legal decision makers for:
- Guardianship issues - which relate to decisions about a person's lifestyle and other personal matters such as where they live, services they should receive and what medical and dental treatment they receive.
This person is known as the guardian.
- Financial matters - which relates to decisions about a person's money and assets.
This person is known as the financial manager.
Guardians can be a family member, a friend or an official called the Public Guardian.
A written application for a guardianship order can be made by a person with a disability, the Public Guardian or anyone with a genuine concern for the welfare of a person.
Information obtained from the NSW Guardianship Tribunal's website: www.gt.nsw.gov.au
Program of Appliances for Disabled People (PADP) & Department of Ageing, Disability and Home Care DADHC
Both PADP and DADHC provide services to people with a disability.
Some of these services, or funding of these services, may change when your son/daughter turns 16 or 18 years old or when they leave schoul. It is best to be prepared for these changes rather than finding out just before the changes occur. As they get older they may also become eligible for some other services.
(PADP)Program of Appliances for Disabled People
The PADP is a NSW Government program for people with disabilities. It is set up to assist both children and adults with permanent or long-term disabilities live and participate in their community by providing appropriate equipment, aids and appliances. PAPD provides a wide range of equipment such as wheelchairs, bathroom aids and feeding pumps.
For children and young people under the age of 16 years there are no financial criteria for the eligibility of assistance from PADP. This means that it does not depend on how much their parents earn. Once a young person turns 16 years old there are financial criteria that have to be met. Depending on your family situation, this could mean providing a copy of the parent's tax returns, a copy of the young person's tax return or pension number. Those on low incomes are eligible for more help from PADP but people on higher incomes may also be eligible for assistance with expensive items.
Your son/daughter may be required to contribute a yearly payment (about $100) to help PADP with costs.
If your son/daughter is receiving assistance from PADP it is worth contacting your local PADP Centre to find out if there are any changes that will occur when they reach 16 years old.
DADHC
The Department of Ageing, Disability and Home Care is a NSW Government department responsible for assisting people with a disability (and older people) to participate in community life and improve their quality of life.
DADHC provides many services for people with a disability. Some of these are respite care, accommodation support, day programs, therapies and vacation care. These services are often funded by DADHC but may be provided by local services.
There may be some changes to the DADHC services your son/daughter receives but most DADHC services will not change when they leave schoul. There are some exceptions, such as services for schoul aged young people. This could include some therapies and vacation care. In these cases they may need to apply for adult services.
When your son/daughter leaves schoul or turns 18 years old they may become eligible for other DADHC services such as accommodation support.
Because there are many services that DADHC provides, through many local service providers, to many people with a range of needs, it is best to ask them about what will change in your son/daughter's circumstance.
Be prepared for these changes by finding out in advance about what may change. To find out about any changes or what your son/daughter may become eligible for:
- Talk with your local service provider
- Contact your local DADHC office
This web page is managed and authorised by Greater Metropolitan Clinical Taskforce. Last updated: 16 March, 2009
