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yourtown let’s c reote brighter futures ’
A summary of Your Voice 2021 findings of the experiences of young people with a lived experience of disability.
A submission to the:
Royal Commission into Violence, Abuse, Neglect
and Exploitation of People with Disability
Prepared by:
yourtown, February 2022
Authorised by:
Tracy Adams, CEO, yourtown
Email: advocacy@yourtown.com.au
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In 2021, yourtown heard from over 3,500 young people, aged 15-24, through the Your Voice project. The project involved a national survey, national forum, and youth summit. It provided young people with the opportunity to voice their experiences in relation to services across a range of areas, and express their views on how services need to be improved. The final report is available
online at https://www.yourtown.com.au/yourvoice.
In the survey, 467 young people drawn from across Australia indicated that they had experience with disability services. This included young people who: were carers; support workers for people with a disability; experienced significant functional impairment; or who had a diagnosed disability. This document sets out the findings and ‘voices’ of these young people.
Key findings
e 47% of young people found it difficult to get a diagnosis and access support; 20% of young people had positive experiences with disability support:
e 15% of young people felt that the professionals they interacted with to get a diagnosis and support treated them poorly, and had limited understanding of their needs;
e 7% of young people failed to access subsidised support which led to significant out-of-pocket expenses for assessment and treatment; While II% of young people received NDIS support, 44% found NDIS support difficult to access; 39% of young people found their mental health was impacted when accessing support and the treatment they received; 29% of young people accessed disability services in an education setting; 25% of young people struggled to get appropriate support from job agencies; 6% of young people with a disability expressed difficulty in accessing income support.
What young people told us about living with a disability
‘Please listen to us. In terms of disability, try living even one day in a wheelchair, not being able to do anything for yourself, constantly abused by the public and family, in constant pain, emotional and physical. Be told the waiting lists for supports are long and you are required to stay in your filth or situation for months at a time. Go to hospital for weeks at a time for mental and physical health because you are breaking. And be told when you get help you have to live in an aged care facility even though you are 2/ because there arent facilities for your situation or age.”
Barriers to Diagnosis
Young people with a disability told us that access to
support was dependent on their ability to afford [Support is] Extremely expensive, difficult to access, health and diagnostic appointments. While this diagnosis is inaccessible, ableist systems, not client diagnostic process is required to access disability focused, uneducated.
support, it can be both traumatising and time
consuming for young people with a disability. [it] costs a lot of money to be diagnosed so | cannot
OCCESS SEFVICES. Getting a spectrum test is too harrowing. I’ve been told itd be good to get the funding and resources, but
ie ‘ ; Waiting lists and quality of services trying to get help it’s so expensive and time consuming!
for chronic pain and fatigue has been something
‘ sie that’s extremely difficult to deal with. Getting a reference from my GP to see a specialist
was easy due to the nature of my condition. However, the specialist cost over $300 per session and only $200 of that was refunded through Medicare. If / had wanted to see this specialist
months prior, | would not have been able to afford it.
/ dont feel like there’s enough resources for youth
with chronic illness and | dont get the help | need.
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Social and Economic Participation
Young people with a disability told us that accessing appropriate support was essential for their full participation, socially and economically in society.
/ve used my University’s equity and diversity
program. | was given a learning access plan which
has helped me with assignment extensions.
/m with At Work’ for looking for work and it is very helpful.
However, young people with a disability told us that a lack of understanding and inappropriate support negatively impacted their social and
economic participation, limiting their potential.
/ was given no other support [besides a learning access plan] and my disability supervisor was very
rushed. At one point, when | mentioned | was
struggling, she just emailed me a link to a “How to
study better” guide. | have autism. | wasnt stressed
about studying.
Unfortunately, there aren’t many services available for students with dyslexia, besides psychology, tutoring and reading materials for parents. My
experience is that I’ve been lucky enough to have found a tutor that caters for my learning disability and understands my way of learning, but there are times my tutor is away, so / have to have anew teacher for that lesson who /m not familiar with and who doesnt understand my learning needs. This sets me back from my classmates because if my teachers were just aware of my disability needs as my tutor is, / wouldnt be disadvantaged and wouldnt have to constantly rely on tuition to understand classwork,
but rather | would be just as equally supported in a
class environment with the rest of my peers.
There is no support related to dyslexia besides tutoring. It is a very under looked disability that has not only impacted my education, but also my self esteem. There needs to be more services related to dyslexia, especially in schools, so we feel supported and heard, and are not disadvantaged to neurotypicals.
/ have found very little in the way of help with my
disability, not even in school support systems. | had to
transfer to online school, and it was still inadequate.
/ keep getting refused Disability Support Payments, |
cannot work, and job agencies put immense pressure
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on me to the point! can no longer receive income
support.
/ tried to go through a disability recruitment agency during my time at university to help me find a job out of university. The lady who had my case was extremely unprofessional as to even asking me specifically and writing down what my physical disability was called so she could google it later. Asa
young person, | felt like | couldn't say no, even though
/ didn’t want her to know. She never helped me land an interview and never assisted in any way with finding a job.
/see a Disability Employment Services place through Centrelink, and they provide no proper assistance.
Mental Health
Young people told us that poor experiences with disability support and the lack of support available to them negatively impacted on their mental health and wellbeing. Further, young people with disability told us that they often felt unsupported, unsafe, and that their lives were limited in scope and value.
They didnt take me seriously and completely left me floating with no resources or support. Social media did more for me than the doctors it cost me hundreds and hundreds to see.
My brother is autistic and suffers greatly at the hands of those around him, any ‘services’ that have been requested or paid for have been (from what I’ve heard) well below the expectation)
As someone with a developmental disability, there are a very limited number of good, accessible services that allow me to function at my full potential ina system designed for neurotypical and able’ people.
Difficulties Accessing Support and Assistance
Once diagnosed, disability assistance is not always
available for young people due to:
¢ Having adisability/s that did not have a functional impact which met the criteria for accessing support;
¢ Difficulties identifying support which is appropriate for their needs and specific situation; and,
e The limited availability of support services for those with specific diagnosis.
The support for autistic people like myself who are verbal and capable of passing within social situations is very limited.
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It’s been difficult to findspecialists relatedto tic disorders, andthe wait time is extremelylong. I’ve been knockedbackfrom ND/5 funding twice and the application process was extremelyhardto Myautism doesn’t get classed as high enough to navigate with anABl I’ve recentlybeen acceptedfor access the supports I couldbenefitfrom. funding, but the process is slow, which I feelisn’t appropriate formyneeds. Community disability services are veryhardto get into. ND/5is even harderto getinto when you need ND/5is anotherbigissue in the disability community. the constantandurgentsupport. When you do finally Oneperson wouldnotgive me access to my own getinto eitherservice, you have to do some ND/5plan. The rules are constantly changing which mismatching untilyougetservices that treatyou also makes it an issue. I’m 15years oldanddealing correct. with myownplan asmyfamily don’tunderstand ND/5. This makesit challenging. I disagree with the Accessing appropriate income support can be a decision someone coming into yourhome to evaluate significant struggle for young people with a disability. ifyou do require a particularthing. This shouldnotbe Long and confusing processes mean that those that allowed A strangergoinginto a disabled person’s require support can be left without critical assistance. home couldmake the clientfeel very vulnerable and
This can lead to functional and situational itis invasive ofpeople's privacy.
deterioration. I have ND/5 andI foundit verydifficult to get onto andthe system was very confusing once I got on. Even while I was experiencing homelessness, Centre/ink didn’tlift a finger to help me. They The NDIShasbeen complicatedto getinto. prolongedtheprocessbyputting me through assessments with 3 clinical psychologists, even afterI There is nostandardisedND/5reviewprocess, and alreadyhada recordedformaldiagnosis from a notallND/5reviewers have the same opinions on psychiatrist, andclinical psychologist, a hospital whatsupports are necessary. It’s luck ofthe draw. discharge letteranddiredletters to Centre/inkfrom my GP, a trauma specialising clinical social worker, a ND/5 decline everyapplication andthings theydon’t unicounsellorandyouth homelessness casework. I knowin the too hardbasket was eligible for the disability pension from the beginning, but theymade mejump through so many I have appliedforND/5 once, andtheytoldme I really hoops toget approved, hence whyI endedup should’ve have beengrantedit, butI wasn’t because homeless. ofa technicality (mypsychiatristdidn’tstate the level ofseverityofautism). So nowI have to go back to my The disabilitypayments are way too difficult and psychiatrist, spendanothertwo hundreddollars, and complexto access properly. The form is designed to go through the whole NDIS application process all confuse andthere areso manythings to fill out, and overagain. there is no information given to doctors andmental health professionals. Theyare often dismissive andcondescending. I have also hadprofessionalsmake mistakes in admin that I knowI will be unable to getdisabilitypayments resultedin referrals I needednotbeingputthrough through Centre/ink as you must ‘have been stable andnecessary care beingpushedbacka whole year. andtreatedfor2 years’ which is completely Access to othersupportservices (DSP/NDIS) are impossible through the publicsystem. extremelydifficult
Young people told us that accessing specialist support Young people told us thatthese difficulties in accessing
through the National Disability Insurance Scheme disability support were amplified for those living in
(NDIS) can be difficult to access due to: rural and remote areas due to:
• Difficulties in understanding complex
• The lack of available disability support services for information and meeting the eligibility
those living in rural and remote areas; and, criteria:
• Substantial financial costs, including travel costs, • The complexities of the NDIS system and the
to obtain a diagnosis or access support in other accessibility of the planning process: and,
areas. • Constant changes to NDIS rules and
operational guidelines around planning and Living rurally, I, along with manyotherpeople, have
appropriate support. foundservices fornon-mentalhealth are veryhardto
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come by where they’re eithergreatlydiscountedor free. Services often ore too expensive forpeople to I am underthe NDIS formymentalhealth andmy use, ortheyore requiredto travel which again means autism. Itprovidessupport workers coming to the it’s too expensive. house on a regularbasis andhos been reallyhelpful formymentalhealth as well Quality ofSupport Young people told us about the poor treatment they Lotofronges ofservices you con access. NDIS is have experienced with services. Of concern was their great
experiences of ableism, professionals' lack of
understanding regarding disabilities, as well as Overall, experiences with support significantly
systems, while designed to support them, impairing contributed to young people with a disability’s quality
their ability to access support. of life, their ability to interact socially, live
independently and achieve at study and work. Also having extremelydismissive doctors who ore unable to help me andtellme thatisn’t: I’m on the Autism Spectrum andhove ADHD. senso,y psychosomatic processing disorder andhyper-mobility. I hove been tophysios, doctors, andtherapists, andhove been The system is designed to give us disabled people as verysatisfied with accessing them andthe qualityof little support as possible. We ore assumedto be theirservices, andhowknowledgeable they were in faking ourdisabilities unless we con provide a manydifferentareas oftheirprofession. mountain ofevidence from a varietyofspecialists, which costs A LOTofmoney. I hove autism andithos been goodto be matched with a greatsupport worker who helps megetthings I am not token seriously because mydisability is not like groceries done. obvious. My oldersister receives NDIS funding andthis hos I was given a teaming accesspion which hos helped helpedher with engaging with the community, as well me with assignment extensions, butno othersupport as beingable to affordherneeds. andmydisability supervisor was ve,yrushed Atone point, when I mentionedI was struggling, shejust Guide Dogs SA/NTis the best! Theyhove friendly emailedme a linkon “howto studybetter·guide. I people working there, support when you needit, and hove autism. I wasn’t even stressed aboutstudying. so manyotherreasons whythey’re great
Young people with a disability told us that the quality I hove a fused spine andthatis mydisability. All of support they received through the NDIS could be services ore ve,yhelpfulandcon assist meifI needa poor due to: wheelchair oranything else when mybockgets really
• The treatment they received; bodandpainful
-
Complexities with accessing and understanding their NDIS plans: and,
-
The result of changes to the cost of services that reduced the amount of support they could get or afford on the plan they were given.
It’s a broken system forpeople who don’t: hove resilience andtoo unwellto continually advocate and complain aboutthe needforfunding orpion changes, andit’s too hard when mymum gets sickto wait 9 months for a pion review togetfunding changed is ridiculous. So, I do thejobs andcore formymum and mysiblings as well However, young people told us that the quality of support they received through the NDIS was positive when they were offered appropriate support that helped them to feel more included.
The NDIS is greatformybrotherandDadandhelps them loads.
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