GETTING CONNECTED

Getting Connected is about finding the right support network to help provide you with confidence, peace of mind and ideas about caring for your little one.

After Finding Out about your child’s hand difference, it is possible that you were given many referrals. Many parents find this overwhelming, especially parents having their first baby.

See below for a list of Medical & Health Professionals that Aussie Hands parents have found useful.

Support Networks

In the section Finding Out parents reported that it is normal to feel a range of emotions as they learn about their child’s hand difference and what it means for them. Aussie Hands parents suggest that it is important to focus on your own wellbeing during this time as well. You can do this by:

Accessing support groups

According to workshops conducted, accessing support groups was the #1 way that new parents found out the information they needed to know. This is not surprising. Research has consistently shown that support groups foster personal empowerment and an improvement of overall wellbeing for their members (Barak et al., 2008).

Hearing the stories of parents in similar situations to your own can provide you with new perspectives, reassurance, and advice. Seeing other children with a hand difference thriving and adapting can also be reassuring. Support groups helped Aussie Hands member Joanne feel like her daughter’s hand difference is ‘Not such a big deal.’

As your child gets older, support groups may also be beneficial for them. Seeing other children with a hand or upper limb difference like their own can be exciting. It reassures them that they are not the only one, and often provides them with an immediate friendship.

Some support groups that you can find out about include:

Counselling

Finding out that your child has an upper limb difference can be an overwhelming experience for many parents. You may wish to speak with a counsellor or psychologist who can support you in navigating through the experience.

If you are a Medicare card holder you may be eligible for a Mental Health Treatment Plan.

This will entitle you to a government rebate on up to 20 appointments per year with a mental health professional. If this is something you’d like to consider, contact your GP.

For further information:
Better Access Rebates
Beyond Blue
headspace

Speaking with a social worker

Social workers are a part of most hospitals, and limb difference clinics usually have one in their team. Their role is to provide psychosocial support. This can include:

Being a communicator between you and the hospital system
Counselling
Advocating for you and your child
Providing you with additional resources.

You can also contact a social worker outside of a hospital setting for short term counselling. This service is free through the Australian Government, and you can contact a social worker by calling Centrelink.

Health Professionals

It can be hard to retain all the information during a medical appointment, so we asked Australian Hand Difference Register Coordinator, Joanne Kennedy, for her advice on how to get the most out of your appointments:

Keep a piece of paper nearby

In the lead up to your appointment, if you keep a piece of paper nearby, you can write down questions you’d like to ask as you think of them. You could also use the notes function in your phone. Being able to refer to the questions you want to ask is a good way to ensure you get the information you need.

Take notes in your appointment

This ensures that you can look over the information again later. It can also be good to take someone else with you to the appointment. They might pick up on pieces of information that you miss.

See below for a list of Medical & Health Professionals that Aussie Hands parents have found useful.

Limb Difference Clinics

Limb Difference Clinics are a great place to start when looking for specialised care for your child. Each has a team of health professionals who have expertise in limb differences. This team can include rehabilitation consultants, surgeons, physiotherapists, occupational therapists, geneticists, prosthetists, interpreters, and social workers.

Keeping your chosen health professionals within the same network can make communication simpler.

At a Limb Difference Clinic, the same team tends to work with your child until they are 18.

In Australia, Limb Difference Clinics can be found at:

Not all cities, states or territories have limb difference clinics, but some will have allied health clinics. These have a similar range of health professionals that work within a team, but do not have the specific focus on limb differences. Ask your GP for more information.

In the Northern Territory there is the Allied Health Clinic at Alice Springs Hospital. This service is not specific to limb differences but has many different allied health professionals including occupational therapists, physiotherapists, and prosthetists. This centre requires a GP referral.

Physiotherapist

A physiotherapist is a health professional who has an in-depth knowledge of the musculoskeletal system. They work with your child to improve their gross motor skills, which are movement skills that require large muscles. A physiotherapist might be able to help by using stretches and exercises to improve mobility.

Although a referral is not necessary, your doctor is a good place to start when finding a physiotherapist. You may also find it helpful to ask for physiotherapist recommendations from other families.

You can use the Australian Physiotherapy Association to find a physio in your area. It might be worth calling ahead to find out if they have experience with hand difference!

Occupational Therapist

An occupational therapist is an allied health professional that brings a holistic approach to the health and wellbeing of their clients. In occupational therapy, ‘occupation’ refers to an individual’s capability to participate in activities that are meaningful to them. Occupational therapists support children to participate in developmentally appropriate activities, like eating, getting dressed, playing and completing school work.

They also help their clients understand what they are capable of at a given time and set new goals to work towards. They can offer new techniques and adaptation tools that may assist in achieving their goals. If you and your child decide they will trial a prosthesis, an occupational therapist will provide support and training to ensure they know how to use the prosthesis functionally.

Your GP is a good starting point to ask about suitable occupational therapists in your area, or you can check Occupational Therapy Australia.

Hand Therapist

Hand therapists are occupational therapists or physiotherapists who specialise in conditions affecting the hands, wrists, fingers, and arms. Hand therapists have additional training in this area. They will work with your child to maximise hand function and strength. They will also work with your child to find ways to complete everyday tasks, which may include adaptive tools.

You will usually be able to access a hand therapist at your local children’s hospital. You will also have access to an occupational therapist with limb difference experience through a limb difference clinic. However, it is not always practical to visit a limb difference clinic or children’s hospital. If that’s the case for you, it might be beneficial to find a hand therapist closer to home.

The Australian Hand Therapy Association has a directory of accredited hand therapists.

You may also wish to see a regular physiotherapist or occupational therapist, particularly if you would like to see someone in the community, perhaps closer to where you live.

Hand Surgeon

A paediatric hand surgeon will be able to offer insight into the expected function and growth of your child’s limb difference, even if surgery is not something you wish to pursue.

Whether to pursue treatment and/or surgery can be a daunting decision to make on behalf of your child. Discussing the options with an experienced professional can make it easier. Hand surgeons tend to be in their profession because they care, and have your child’s best interest at heart. They will put you in the best position to make an informed decision.

Dr David McCombe is a hand surgeon and suggests:

Find a hand surgeon you trust early and stick with them! Their insight into your child’s limb difference will grow as your child does.
The earlier you see a surgeon the better! Some conditions become more difficult to treat the longer you wait.

Plastic Surgeon

A plastic surgeon will be able to recommend surgeries that may improve the appearance of the hand. In some cases, your hand surgeon may also be a plastic surgeon.

Prosthetist

A prosthetist works with you and your child to design a prosthesis that best suits their needs and will continue to review and adjust this as they grow. Prosthetics can be a trial-and-error process, with young children often finding them heavy and bulky. An occupational therapist with specific experience in upper limb difference, will work with the prosthetist to determine what the psychological and functional goals for the prosthesis prescription are.

The use of a prosthetic tends to become more appealing as children get older, and they can be used for a wide range of activities including sport and music.

You can find a prosthetist through a Limb Difference Clinic or your local doctor. Alternatively, you can search for a prosthetist through the Australian Orthotic Prosthetic Association.

Geneticist

You may be referred to a genetic specialist. A genetic specialist will discuss any potential heredity implications about the upper limb difference. Genetically linked upper limb differences are rare.

NDIS

The National Disability Insurance Scheme (NDIS) may be an option for your child to help fund their therapy and assistive technology needs. This can include some of the health professionals covered in this list that are not currently covered by Medicare. The NDIS can also fund prosthetics and other adaptive equipment that your child may find helpful as they get older.

If your child is accepted, they will receive a plan that is reviewed every year. This is to ensure that your child is adequately covered, and the plan may require adjustments as your child’s needs change.

Starting Childcare

Approximately 60% of Aussie children will participate in formal childcare. We have created short pamphlet for parents of children with a hand difference who will be starting child care for the first time.

Getting Connected

GETTING CONNECTED