We are trying to get some support for my teenage Moko who has a brain injury after being reversed over by a vehicle, aged 18 months, never to be the same again.
Four years after his accident, an MRI suggested he has pachygyria, which causes Fetal Alcohol Spectrum Disorder (FASD). The Accident Compensation Corporation (ACC) denied his injury claim on the basis that he has FASD, which ACC says overrides the accident. However an official FASD assessment has never been completed. We need the official FASD assessment to be able to move forward but the cost is huge, at over $6500! We have been denied the accident claim after 16 years of battling ACC, and every other government agency. In addition, Whanganui Hospital did not correctly record the original accident, and have refused to amend it. This has also stopped us being able to access support. We get shoved off every time.
How is this young man supposed to manage in the community? He has hardly attended school due to no school being able to cope with his behaviours, no matter how many strategies the specialists provide for the principals and teachers. Who decides who gets help and who does not? What qualifications do the people in the agencies actually have? Are they even qualified enough to be running these agencies?! Why do you have to continue to prove that your child has a disability, when it's been repeatedly confirmed by top specialists? How can an agency demand yet another assessment, by people less qualified, to override a specialist opinion, so that my child will not qualify for help? Why is the Needs Assessment and Service Coordination service (NASC) stopping families in Whanganui from getting the necessary help they need for their children with disabilities?
These access barriers have stopped my Moko making progress. This is a burden we bear every day. It takes up so much time, and constant changes in medical staff make it even more complex. We are often told that there are other people who are way worse off than my Moko. Cold comfort.
We continue to get brushed off due to incorrect information on my Moko's medical file. I am told it cannot be removed or amended, after trying many times. I have been in touch with the top pachygyria specialist in the world who has confirmed my child does NOT have pachygyria. They have asked for another MRI to be completed, but we are constantly refused this service, and this concerns me. Each specialist we visit has a new spiel on my Moko's medical condition; taking it out of context and removing it as far away as possible from the original accident. The ACC medical team are the worst at making my Moko's medical history complex. They overrode our specialist, who was our main provider.
This all makes me feel undervalued as a caregiver/parent, and this has been an additional barrier to being able to source the correct support. I should not have to battle at every corner. I am asked to jump through all these hoops only to be told we do not meet the criteria, and that it is an ACC issue. I have fought ACC for 16 years, with the last five years in court, only for them to close the door on us. ACC insists my Moko's condition is FASD, when there is has been no official FASD assessment.
It is exhausting and dehumanizing. I have been made to feel worthless and unvalued. I have been bullied by many agencies, medical professionals, ACC, lawyers, teachers, WINZ, ACC specialists and sporting coaches. I have exhausted all avenues, including writing to Members of Parliament, the Human Rights Commission, the Children's Commissioner's office, the Race Relations officer, the Minister of Education, the Minister of Health and Disabilities, you name it. They simply dismiss me by referring me to the Advocate of Ministry of Health and Disabilities. It's endless. :(
What processes can be put in place to remove incorrect medical information from someone's medical file, especially when it hinders the person? Where can we source funding to pay for additional assessments like FASD? I would like to see a Special Needs Teacher Training School set up. We had a teacher from England come into my home to teach my Moko. She had special needs teacher-training and her skills were precious. However it was only for a short time as she took up a teacher's position in a school. Her time with my Moko showed he can improve in his school work.
Ultimately, I want the law changed! I want all people, with any type of disability, to have easy access to an effective advocate. So that parents can get on with caring, and be able to get the necessary support much more easily. Accessibility legislation should allow all children to attend school, with funding for extra specialist teachers whenever necessary.
This is a story about the barriers many face. We're sharing it because we want a law that puts accessibility at the heart of an inclusive Aotearoa New Zealand.