You have started a process of investigating a diagnosis of a learning disability, so now it’s time to keep track of all your child’s documents. This is a journey during which you will gather a large amount of paperwork that will help you understand your child’s needs better and what services will be required into the future. So let’s set about organising this information as it will help you now and as you travel forwards in time to support your child.
It is important to keep all information because in the future you will be required to have documents that tell the story of ‘an ongoing’ Intellectual Disability(ID). This may seem quite strange as your child’s disability may be quite evident but that is not always how the systems around you see things. Your knowledge base will also serve as a record to demonstrate the history of the diagnosis over time. During this time your child may also present with other learning disabilities such as Autism Spectrum Disorder(ASD) or Attention Deficit Hyperactivity Disorder (ADHD).
The following file structure may assist you to organise your documents in one place. These are suggested categories for your child’s information so that it’s easier to file new documents and locate archived documents for future reference.
- All standardised assessments and reports from the diagnosing practitioners:- paediatrician, psychologist, genetic specialists, therapists, specialist teachers.
- Contact details: paediatrician, other specialists involved e.g. physiotherapist, psychiatrist
- Medical records: immunisations, record of any tests and procedures e.g. blood tests, surgeries, hearing and vision tests, genetic testing.
Stages of development
- Birth to 5 years: family history, history of the pregnancy, time of diagnosis, presenting observations, early intervention (EI)/ kinder programs observations, reports and assessments, details of family support workers and funding support packages, case management meeting notes.
- 5 to 12 years: assessments for access to education and support services, transition documents from EI/kinder to school, initial and subsequent Individual Learning Plans, school contacts of key personnel, details of family support workers, any agencies involvement, funding support package details, respite care details, case management meeting notes. If a further diagnosis of a learning disability has been identified include these documents.
- 13 to 18 years: updated formal assessments and reports, Individual Learning Plans, Transition Plans, work experience reports, planning documents for post school support options, certificates of achievement, resume, case management meeting notes.
You’re now on your way to building a great knowledge base which will be a support to you and your loved one. You will always be thinking about what your child will need and this will change overtime, so organise your information and the process of doing what is needed will be easier. This process will be invaluable to help you to demonstrate the ‘ongoing’ history of your child’s Intellectual Disability for future ongoing support.