NDIA Accountability Project

Autistic daughter’s struggles with ARFID, PDA and sensory challenges

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Submission on National Disability Insurance Scheme Amendment Bill

To all Honourable Members of Parliament

I am a single mother of an Autistic teenager who is currently grappling with the immense fear over the proposed changes this Bill poses. I am professional woman, having studied Law and post-graduate psychology, and I struggle to maintain my full time employment with a very supportive workplace while supporting my 16 year old, “level 2” Autistic daughter who is currently supported by NDIS. We live in a regional location where there are limited opportunities for my daughter, and I am also chronically ill myself. My family is unable to assist us with my daughter’s needs for various reasons the majority of the time.

My daughter requires Occupational Therapy, Psychology and a support worker, which we can only access through NDIS. My daughter has also been diagnosed with ADHD, dysgraphia, Avoidant/Restricted Food Intake Disorder (ARFID), Pathological Demand Avoidance (PDA), anxiety, Obsessive Compulsive Disorder (OCD), suspected dyslexia and dyscalculia, and suspected Ehlers-Danlos syndrome which we are going through the process to have diagnosed formally.

For us, NDIS is a lifeboat in the ocean we are drowning in. My daughter has been to 10 schools, bullied at all of them, let down by the education support which has not supported her. She has struggled to make friends, and so her lifeline to the outside world (with any kind of consistency) is myself and her support worker. My daughter is now doing distance education due to the bullying etc. so these sessions are vital to get her out into the community so she doesn’t withdraw completely as she has done in the past.

I had HELLP syndrome when I gave birth to my daughter, then meningitis when she was about 10, which have left me with several chronic, severe health conditions. I am struggling enough with my health at a cost of over $120 a month in prescriptions alone, let alone managing my fatigue. To take away the NDIS support from my daughter and add that additional strain onto me will literally impact my health and wellbeing, not only mentally but physically.

I already struggle mentally and emotionally watching her struggles WITH NDIS. Do you know what it is like to watch your child struggle daily? To feel like this every day and try your best to support them through it, take them to all the therapies, organise all the appointments, see the small steps forward, the growth, but still see them feel like they have no hope because the Government doesn’t think she’s worth supporting? She already feels like a failure, a burden, like there is so much to be fearful of especially when she knows this kind of Bill is before Parliament. Introduced by the very party I voted for… thinking they were more supportive than the others. I feel lied to, misrepresented to, by Labor, who I have strongly supported. One of the very things I researched during the election was each party’s stance on NDIS, so to say I am disappointed we are here is putting it lightly.

Concerns on Definition of Functional Capacity

Functional Capacity Cannot Be Considered in Light of the Primary NDIS Approved Diagnosis Alone

Functional Capacity cannot be considered in light of the primary NDIS approved diagnosis alone. It needs to be recognised that most people on the NDS do not suffer from one isolated condition/challenge. My daughter has 7 confirmed with another 3 suspected. All those overlap and determine how the primary diagnosis presents. You cannot untangle her “autism” from everything else. Co-morbidities are a fact of life. If you have autism you have anywhere between 60-90% chance of having a co-morbidity (see Autism Awareness Australia for more information among many other sources).

My daughter’s NDIS plan is approved on her Autism (level 2), however to ignore the other “labels” would be to completely diminish the level of anguish she experiences on a daily basis as each diagnosis impacts the other. Her Autism makes her ARFID worse, her OCD makes the ARFID worse, her PDA and anxiety makes certain treatments impossible etc. You cannot isolate one “label” and determine ones’ functional capacity on that basis. Nor can you ignore their situational circumstances. If she was in a family with more money, family supports, a mother who wasn’t chronically ill herself, who didn’t need to work, perhaps the reliance on NDIS may not be so crucial. The fact remains that if she didn’t have autism, she would not have the sensory challenges, the social challenges, emotional regulation would be less challenging, she may not have ARFID or PDA at all, etc. You simply cannot extrapolate one from the others.

My daughter, who is 16 years old, struggles:

  • EVERY SINGLE DAY.
  • EVERY SINGLE MEAL.
  • EVERY SINGLE CHANGE OF CLOTHES.
  • EVERY SINGLE CHANGE OF PLAN.
  • EVERY TIME THERE IS A CHANGE OF ROUTINE.
  • EVERY TIME SOMEONE HAS TO CANCEL A PLAN e.g. support worker or teacher sick.
  • EVERTIME A FOOD CHANGES PACKET, SHAPE OR COLOUR.
  • EVERTIME someone asks her a question.
  • EVERTIME someone looks at her.
  • EVERTIME she disagrees with someone – big or small, it becomes big.
  • She only drinks two things. We have to take it with us everywhere as you can only buy it at two shops.
  • She can only socialise for about 2 hours before she is completely overwhelmed.
  • Noises, lights, too many people, wrong textures, smells, anything can be so overwhelming that she completely shuts down and cannot communicate.
  • She cannot go anywhere on her own for even a couple of minutes (e.g. cannot even get served at a shop with me a few metres away).
  • She can’t get a part time job as all the shops are too bright, too loud, too busy, too many people, too much talking, too much standing (which makes her dizzy).

This is just a very condensed summary and barely touches the surface of her lived experience, yet I am led to believe these struggles, that a level 2 Autism, won’t met the definition of

Functional Capacity

How is that so? How is that fair?

She will need a support worker to go with her to try things like a part time job when she can find a suitable placement. She will also need a support worker if she wants to try TAFE or university to assist her with travelling to and from campus and meeting a support person on campus to assist her as she will not be able to go to class alone. She will need someone to go shopping with her for groceries etc. if she is to achieve living with some level of autonomy.

Requirement for Reasonable Treatments

I am very concerned about any condition that would be introduced requiring participants to have undertaken “reasonable treatments”. This is a violation of human rights and against the autonomy the NDIS was intended to promote for the disabled community. The only person who should be determining what treatments the person has is between the treating practitioners, the participant, and where needed, their carers with primary consideration given to their autonomy and dignity at all times. The Government has no place in legislating what reasonable treatment is for a person as a punishment or bribe in order to obtain NDIS funding.

Recommendations

  • If Functional Capacity is to be defined, it needs to include:
    • All additional conditions that impact the person’s primary diagnosis.
    • Their personal circumstances including finances, location, access to supports, autonomy, personal choices, human rights, right to work, right to dignity.
  • Remove Local Area Coordinators.
    • Rather than have LACs, perhaps everyone a support coordinator. There is no need for so many layers. It is all additional cost for what benefit? At least support coordinators know their clients and stay in touch.
  • Legal Reviews/Appeals
    • How much money has been wasted on appeals? From what I have read, there is a considerable amount wasted in legal fees on appeals for denied or reduced plans.
    • The number of times NDIA hasn’t even read reports or turns up to tribunals and staff are clearly not across files, is ridiculous and a waste of public funds. More appropriately trained staff who are wanting to help rather than treat participants like leeches or criminals would save money.
    • Actually read the reports before contacting participants/carers and tell them what the appointment is (I have been tricked twice what they were calling about, which is misleading. I actually thought I was talking to the LAC when it was NDIA for the actual review which was unfair).
    • Instead of treating current genuine participants like criminals, pursue the people actually defrauding the system. If there were crackdowns on people (providers), consequences that are made public, it would have to be a deterrent to future fraudulent activity.
  • Set up a tip line where people can call in anonymous tip for suspected fraudulent providers.

Conclusion

People with disabilities are at an increased risk of depression and suicidal thoughts. SIGNIFICANT risk. The research is out there. If you take away these NDIS plans, people like my daughter have their whole world taken away, made infinitely smaller. I have already seen my daughter go through this, withdraw from the world, question her worth, her will to keep putting one foot in front of the other. She is already questioning her value and future. If you continue with this plan and shrink her world smaller, I am terrified to think what this will do to her. Her support worker is her key to the outside world. Her support worker has the ability to get her to engage in activities and increase her independence, get her out of the house and socialising with people to build her skills and experiences, they work on her life skills and emotional regulation. Her OT has been instrumental in her emotional regulation, social skills, daily living skills and assisting with her ARFID and sensory challenges. Her psychologist has been a lifeline in the darkness, and helps her understand others, build her empathy and social skills. I don’t know what we would do without these professionals, and I can’t afford these without NDIS. I can’t understate how much this team has achieved with her to date, and how lost we will be without them if this goes ahead as is being described.

We have seen tragedies where families have felt overwhelmed and made tragic choices because of it. While it is something I could personally never do, if these changes go ahead, I truly believe there will be parents who feel overwhelmed, and there will be disabled people who feel unvalued, unsupported, overwhelmed. Whether it’s direct choices or indirect ones, thi Bill will cost lives. Are you all prepared to live with that? Shifting the fiscal problem from NDIS into other systems doesn’t make it go away. Find the real sources of the problems and fix those instead. Our hospital systems are already overwhelmed, are experiencing significant ramping even here in and , mental health services are overwhelmed with massive wait times and I can’t afford private services for OT, psychology and support work.

I implore…. beg you…. to please reconsider this proposed legislation.