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;

Story

Does NDIS address the needs of traumatic brain injury thrivers?

by Paul McMahon

Stories/376 , Issues/Disability , Issues/Healthcare

Brisbane City QLD 4000, Australia

16th Nov 2018

Leanne Whitehouse's inspiring story is testament to both the possibilities and limitations of the NDIS.

Leanne Whitehouse is a person limited by a sometimes often forgotten and invisible disability.

Leanne was a 21 year old aspiring insurance professional when her life took a turn in 1988. While asleep in the passenger seat on the way home after a date in Sydney, her boyfriend nodded off at the wheel and crashed into a telegraph pole. They both survived.

Leanne's first memory was being wheeled out of a plaster cast room. It was one week after the night of the accident. The last thing she remembers before that was having ice cream at Manly Wharf.

Leanne was told that upon admission numerous doctors came to examine her individual physical injuries and that brain scans were done in order to further monitor her. Although many surgeries took place, Traumatic Brain Injury (TBI) was not on their radar. She was in hospital for 3 weeks before her release.

Leanne was then re-admitted due to complications of a perforated bowel. Further operations and recovery required three more weeks of hospitalisation. Numerable re-admittances for bowel blockages occurred until 2013.

Since the accident Leanne has never been able to perform 'work' like she did before it. She was taken off customer duties and hidden in the back office, away from public eye. She tried and tried to get promotions but never achieved her goals.

"Looking back I can see why", she said, "for a normal 9 to 5 job I started at 7am and finished at 7pm or later to finish everything a normal person could comfortably complete in normal work hours".

Leanne attempted to ask for help but her communication skills limited her.

Her TBI wasn't initially diagnosed or treated. It was simply diagnosed as bruising to the brain stem.

5 years after the injury she was told by a Psychologist that, "there is nothing we can do to help with your symptoms - headaches, migraines, vertigo, blackouts, sleeping 18 hours per day".

She said looking back at her 'after hospital care', "Regarding TBI, it didn't exist".

In 2009, using her own motivation, research and funds, Leanne sought the help of a psychologist who specialised in treating patients with TBI. After three months of cognitive training and her short term memory increased by 20%. An improvement she described as,"totally amazing".

In 2013 Leanne was finally medically diagnosed with TBI and Complex Post-Traumatic Stress Disorder (CPTSD). A friend suggested Disability Support Queensland could help.

In response to her attempt to seek support they responded vaguely by saying there was no funding and that the National Disability Insurance Scheme (NDIS) was rolling out across the country.

In 2015 she began attending public information announcements about NDIS and started taking notes to assist with her application. NDIS didn't roll out until July 2018 on the Gold Coast, where she now calls home.

Leanne recalls the 6th September 2018 as a joyous yet solemn day of reflection. Ironically, she was accepted for NDIS on the 30th Anniversary of her Traumatic Brain Injury.

She received a letter saying she'll be contacted for a pre-planning meeting in three weeks. That time has now passed and there could be up to a 12 month wait because so many people are in the queue.

"I'm overwhelmed, anxious, frustrated but determined", she said.

Leanne said that in the past five years she's learnt more from support groups than from 30 years of medical diagnosis, treatment and prognosis.

One thing that has helped her greatly from a government point of view was when she did the 'Steps Program' run by Brisbane's Princess Alexandra Hospital. This program helped her confidence and ability to talk about Brain Injury with more people.

Leanne is now trained as a volunteer peer leader and looking forward to helping more Brain Injured people improve their lives.

"This program is understaffed but should be expanded nationally", she said.

Leanne joined Facebook around 2008, when forums began to meet her needs. Communication has changed dramatically in the past 30 years, "exponentially in the last 10 years", she said.

She's become more aware of her own Brain Injury by reading about others and relating to what they're saying about their experiences. She feels more comfortable with peers than psychiatrists and specialists. Leanne said, "it improves getting along with people when opening up and telling them about my brain injury and that sometimes I need help".

NDIS does open possibilities, but is limited, as seen in Leanne's experience, by the rigmarole of government health support. There are a multitude of complex individual stories out there like Leanne's, that highlights the drastic need for planned action for TBI survivors.

Only time will tell if NDIS addresses Leanne's needs.

I also suffered a Brain Injury in 2014. I too was discharged from hospital and sent off on my lonesome voyage of discovery. It shouldn't be like this. Automatic support should exist with more strategies in place for patients to return to happy days, not obstacle course journeys created by Traumatic Brain Injury.

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