Lilyana
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‘A lot of doctors don’t seem to understand … people with disability and how to work with them. They think it’s too hard.’
Lilyana is autistic and lives with intellectual disability and epilepsy.
She told the Royal Commission many doctors and dentists do not understand how difficult it is for people with disability to access and pay for medical services.
Each year Lilyana has to undergo a number of medical reviews. The NDIS requires evidence of her disabilities each time her plan is renewed. Specialists require a new referral from a GP every 12 months. Licensing authorities need yearly documentation for her to maintain her driver’s licence and mobility parking scheme permit.
Lilyana’s GP knew her well and was able to handle most of her documentation requirements. However, he recently retired and she needed to see another doctor at the clinic. Although Lilyana’s been going to the same clinic for almost 20 years and all the information is in her file, the new GP wanted her to see a specialist.
Lilyana said the specialist didn’t know her and the GP didn’t give him any information about her. The specialist ‘messed up the form’, restricting the distance she could drive. This affected Lilyana’s independence because there is no public transport near where she lives.
‘[I had to] do a review and get two more specialists to back me up to make me unrestricted,’ she said. ‘People with disabilities should have a choice whether they see their GP or specialist for documentation and evidence.’
Lilyana also spoke about the barriers people with disability face accessing dental services.
For many years Lilyana visited a local dentist. He knew she was on the pension and charged her half the standard fee. ‘Not once along the lines did he have to increase it.’
When he retired the business was sold and the new owners ‘didn’t even care’. She said they refused to negotiate a reasonable increase and would only accept the full fee. Lilyana was forced to find a dentist further away.
‘Unless changes are made people with disabilities will continue to face barriers.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.