Message from the Minister Learning your child has an intellectual disability raises many questions, especially about what supports and services are available. Intellectual disability may be the result of a range of factors, and can sometimes be a component of other disabilities such as autism. As a development disorder, it is critical for young children with an intellectual disability and their families to access services and supports during the early years. It is these early interventions that can enable a child to achieve important developmental milestones. My child has an intellectual disability is a guide for families about how they can support their child’s inclusion in family and community life. It includes important information about your child’s development, and practical advice about the services and supports that are available to them. Families of young children with disability need support to link with the vital services they need. The Queensland Government is committed to improving direct services to families through initiatives such as Parent Connect, and by increasing the number of speech and language pathologists for all children with disability in Queensland schools. By delivering these new priorities for Queensland, we are enabling a better future for Queensland families of children with an intellectual disability. I would like to thank the Cootharinga Network for their contribution to this guide and their ongoing support for families in Queensland. The Honourable Tracy Davis MP Minister for Communities, Child Safety and Disability Services My child has an intellectual disability: Information for Queensland families of 2 young children Contents 1. About intellectual disability ...................................................................................... 4 2. Diagnosis ................................................................................................................ 6 3. Early intervention services ...................................................................................... 9 4. Early childhood education and care ...................................................................... 14 5. Starting school ...................................................................................................... 17 6. Aids, equipment and assistive technology ............................................................ 20 My child has an intellectual disability: Information for Queensland families of 3 young children 1. About intellectual disability This guide is intended to answer some What are the causes of of the questions that you may have about your child with an intellectual intellectual disability? disability or if your child has recently The causes of intellectual disability are been diagnosed with an intellectual disability. often unknown. The most common causes include: Intellectual disability may be genetic conditions such as Down characterised by significant limitations syndrome, Fragile X syndrome, in both intellectual functioning and in Williams syndrome and Prader adaptive behaviour, which covers Willi syndrome many everyday social and practical skills. This disability originates before problems during pregnancy such age 18. as infections or exposure to alcohol, drugs or other toxins Children with intellectual disability problems at birth have greater difficulty in learning new environmental factors such as things, understanding concepts, exposure to poisons, lead or solving problems, concentrating and mercury remembering. consequences of neglect, such as The difficulties children with intellectual malnourishment or inadequate disability may experience vary from medical care child to child and depend on factors complications from health such as the presence of other problems such as meningitis, disabilities and the child’s own unique measles or whooping cough. personality. While there is no cure for intellectual Often children aged up to six years are disability, early intervention, education considered too young to receive a and support can help children grow to diagnosis of intellectual disability. their full potential and achieve happy, Instead ‘developmental delay’ is used productive and fulfilling lives. to indicate that the child is experiencing difficulties in various areas of their skill development. However, this does not mean that because a young child is considered as having a ‘developmental delay’ they will subsequently be diagnosed with intellectual disability. My child has an intellectual disability: Information for Queensland families of 4 young children What are the early signs of intellectual disability? Young children with intellectual disability may have difficulties in a number of areas of their development. These difficulties may include: slowness in learning to sit, crawl or walk delay in learning to talk or ongoing trouble with talking poor attention limited planning or problem solving abilities (e.g. a child may be unable to play in a constructive way with toy building blocks) difficulty with understanding rules and instructions behavioural and social problems trouble with self-care tasks such as getting dressed, toileting and feeding themselves. It is important to remember that all children develop at different rates. Some are slower than others but catch up with time. However, if you are concerned it is better to have your concerns checked than to wait and see. How common is intellectual disability? Intellectual disability is the most common primary disability reported in Australia. Approximately three per cent of Australians (around 700,000 people) have an intellectual disability. The majority of intellectual disability in Australian children results from autism and genetic disorders such as Down syndrome, Fragile X syndrome, Williams syndrome and Prader Willi syndrome. My child has an intellectual disability: Information for Queensland families of 5 young children 2. Diagnosis The early years are critical to a child’s Tips for parents development. It is the time when the brain is still developing and is Keep a diary or video clips of any especially responsive to supportive concerns you have about your child’s environments and therapies. development. This information will help you during your consultation Having your child assessed and with your GP or paediatrician. diagnosed with intellectual disability will give you access to a range of supports, treatments and therapies, including early intervention services. Who provides a Diagnosis will help you to better diagnosis of understand how your child’s development and functioning is intellectual disability in affected by intellectual disability. It Queensland? may assist you to discuss and explore your child’s learning and cognitive In Queensland, a paediatrician will abilities, motor skills and health in diagnose intellectual disability in young general. It may also assist you to children. understand why your child may Your GP can provide referral to a behave in certain ways. paediatrician. With a formal diagnosis, your family A range of therapists including may also be able to access funding or occupational therapists, psychologists programs provided by the Queensland and speech and language pathologists Government, and non-government may play a role in the diagnosis and organisations. assessment of intellectual disability. Some younger children may initially These professionals may also assist in receive a diagnosis of developmental planning your child’s physical, delay. This occurs because the cognitive, social and emotional significant developmental changes that supports. occur in the early years can make it Paediatricians can be seen privately or difficult to determine whether through the public health system. difficulties experienced are temporary There will usually be a cost to access or permanent. a private paediatrician, however, Children with mild intellectual disability waiting times for an appointment may in particular may not receive a formal be shorter. The consultation will be at diagnosis of intellectual disability until no cost if it is with a paediatrician in after starting school when it is easier the public health system. to determine if the child’s learning Families living in rural and remote difficulty is permanent. areas can access a visiting Department of Health paediatrician. Talk to your GP about getting a referral. My child has an intellectual disability: Information for Queensland families of 6 young children What might the but it is also good to talk to your GP about local parent support groups and assessment say? the availability of professional support such as a counsellor or social worker if Children with an intellectual disability you are feeling overwhelmed. will receive a standardised assessment at some stage in their When your child receives a diagnosis childhood. This will give them an IQ of intellectual disability a number of (intelligence quotient) score. things will happen. Your paediatrician Depending on the IQ score, the child will discuss the types of supports and will be identified as having a mild, services that will optimise your child’s moderate, severe or profound development and a plan may be intellectual disability. developed. Assessments will indicate that your The plan is about your child so you child’s cognitive abilities and adaptive and your family should be involved in behaviour skills (e.g. communication its development. You will also receive and social skills, personal care skills), information on the services and when