By Raising Children Network
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    Use this A-Z search to read a brief explanation of disability terms as well as definitions of the disability professionals you may encounter.Go to Disability Reference
 

Here are some starting points for finding the help you need for your child with disability.

Getting started

Siblings and other parents

Getting support

Common concerns

I don’t understand what supports and services we’ll need for my child.

Make another appointment with your paediatrician or with the specialist who diagnosed your child to ask more questions.

Look into the various supports on offer. You might need to look for something specific, such as speech therapy, or you might need a case manager or family services coordinator who can help you work with a range of different services.

My child has many support needs. I’m not even sure where to start in the system.

To find a service, start with Early Childhood Intervention Australia. An intake worker or case manager from your local service will be able to talk you through the requirements and what services might be available to you.

What services might need planning well in advance?

The following are examples of services that you might want to plan in advance:

  • Extra support for child care and preschool: if your child will attend or is attending a mainstream service, the service might be able to get extra assistance so it can fully include your child. 
  • Classroom support: when your child starts school, he might need support in the classroom. If your child is attending an early intervention service or children’s service, talk to staff the year before he’s due to start school. When you’re deciding on a school, talk to school staff about your child’s needs and what they might be able to provide.
  • Mechanical supports for lifting: if your child has mobility difficulties and you have to lift her manually, you might need mechanical support in the future. Find out what mechanical supports are available, how you might have to adapt your house or car to use them, and what financial assistance you can get to help with the costs.
  • Communication support: if your child has a communication disorder, there are organisations that will assess his needs and find the best ways to help him communicate. Find out if there are any of these agencies in your community, what they offer, and what you need to do to use their services. 
  • Support for you and your family: you and the rest of your family need emotional support too. Some services offer counselling, parent support groups and sibling supports.

I feel like my other children are missing out.

Find a sibling support group to help them cope and give them a chance to meet other children in similar circumstances. Try Siblings Australia for advice, or read our article on siblings of children with disability for other ideas, including spending some one-on-one time with other siblings.

Other mums and dads in my parents group don’t seem to relate to my child or my needs.

Find a parent support group with other parents in similar circumstances to yours. Peer support groups can be particularly useful for parents and carers of children with disability or chronic illness. Parent support groups can reduce the feelings of being isolated and alone, and can help parents build a group of friends and contacts who understand their situation. Groups might be run by parents, or there might be some sort of professional facilitator involved.

Parents of children with disability who aren’t yet going to school and who are getting a carer’s allowance can take part in parent support groups through MyTime

Playgroups are one type of peer support group. Some groups are designed just for children with disability. There are three different types of playgroups: 

  • Community playgroups – these are run by parents.
  • Supported playgroups – these are run by professionals. They’re usually aimed at culturally diverse, indigenous or teenage-parent families, disadvantaged families and families where the parent or child has disability or mental illness. 
  • Intensive support playgroups – these are for very disadvantaged families. They’re usually facilitated by a social worker and offer support and information about a wide range of services for families.

Groups run by parents are often less structured, with a focus on providing emotional and social support. Facilitator-run groups often try to deal with specific issues and solve specific problems. There will be more structure, and participation might be more frequent or require more of you.

The key is to look for a group that suits your style and gives you a sense of belonging and being supported.

Playgroup Australia can help you find local playgroups. 

Online support groups can also be helpful. You might like to check out our forum for parents of children with disability. Here you can share stories, advice and support with other parents whose situations might be similar to yours.

I love my child, but being a full-time carer is exhausting.

There are various types of services that can give you a break, including respite care and domestic assistance. Commonwealth Respite and Carelink Centres throughout Australia are a single contact point for detailed information on local respite services. They’ll help you get the respite that best meets your individual needs.

It can take a long time to find respite care you like. Once you find it, you might have to go on a waiting list. Even though you might not need it now, make enquiries in case you decide you want respite care in the future.

To find out where the nearest Commonwealth Carer Respite Centre is, phone the toll free number on 1800 059 059.

We can’t afford to provide all the supports our child needs.

The Federal Government is the main source of financial support for people with disability and their carers. Contact Centrelink to make sure you’re getting all the payments you’re eligible for.

You might also be eligible for other sources of funding through the Commonwealth, States and Territories Disability Agreement. Your state government services should be able to tell you.

It’s also a good idea to talk to the service providers you’re using. They might have access to funds to support children with needs like your child’s, or they might be able to provide the service at a reduced rate.

Funding of up to $12 000 ($6000 per financial year) is available for children under six who’ve been diagnosed with Down syndrome, cerebral palsy, Fragile X syndrome, a sight or hearing impairment including deafblindness, Prader Willi syndrome, Williams syndrome, Angelman syndrome, Kabuki syndrome, Smith-Magenis syndrome, CHARGE syndrome, Cornelia de Lange syndrome, Cri du Chat syndrome or microcephaly. The funding is available from 1 July 2011 under the Federal Government’s Better Start for Children with Disability initiative. It will cover early intervention services such as speech pathology, audiology, occupational therapy, physiotherapy, psychology and orthoptics.

My child is attending a service, but I don’t think there’s enough support.

You can always raise concerns with your service provider or manager – they might be able to help by offering your child a more appropriate service. If this doesn’t sort things out, ask what the grievance process is for the organisation. You might need advocacy support to help you get your problem sorted out.

The following organisations can help you with advocating on your child’s behalf:

The internet has a wealth of information on support. A good place to start is InfoXchange. You could also search the internet for local support groups for your child’s specific disability.

I worry about what will happen when we’re no longer able to look after our child at home.

Read about how to plan for the future or consider the possibility of setting up a special disability trust for your child.

I’m not sure my child will cope with starting preschool.

Speak to the preschool staff well before your child is ready to start. Make sure they understand about your child’s needs and the other services you’re using. Ask them what supports they can put in place for your child and what you might need to do to get that support.