Independent Assessments
Submission 223
12.2.21 Dear Arthur Brown
Aam writing to BEG you to put a stop to Stuart Robert’s plan to introduce\nIndependent Assessments as the basis for NDIS planning decisions.
our son, 27 years old and in our full time care at home, has severe cerebral palsy,\nvison impairment, hypersensitivity to sound, a compromised immune system, an\nu developed cerebral cortex and impaired memory function, all of which are\np permanent disabilities.
Currently he is funded under the NDIS for:
Physiotherapy (from Disability Services Commission, WA). The physiotherapist\nivits our home and our son’s day program service, regularly throughout the year. She\ro vides assessment, a written plan for managing his safety and developmental\physical needs; she trains us in how to carry out a range of daily exercises and\novements that prevent contractures of the muscles. Since he cannot walk, stand or\veight-bear on his legs, she monitors the use of his standing frame, which is\remployed at least three times per week, so that his muscles do not atrophy severely\enough to cause him pain and require surgical intervention. Surgery consists of\tendon releases, which most people with his condition may have to undergo three or\even four times during the years they are physically growing. He has had the release\urgery once only and that is because his physiotherapy program WORKS. His\physiotherpist is well qualified and experienced with his particular physical\disabilities.
Occupational therapy (from Disability Services Commission WA). The OT provides a\program for daily use that allows his use of his hands (once rigid and unmoving) to\approach normal functioning. His hand and arm functioning provide him with many\nof the daily experiences and skills he needs so that he can move around on the floor,\handle and learn from toys and therapy items, use electronic aids to learn and\unction, including simple actions on computer to achieve certain images and sounds.\This contributes to his cognitive development, allowing him to make a connection\between his actions and the consequences. Cause and effect. The OT trains us at\home and the workers at his day program in the correct use of productive exercises\and activities that maintain his ability to use his hands, arms and fingers.
Independent Assessments
Submission 223
The Speech Pathology (from Disability Services Commission WA). Our son cannot talk but he can make a wide range of sounds, sometimes very loudly. Through her management, he has reached the point where he has a range of sounds (about 30), all of which have a specific meaning. Thus through speech pathology, he has acquired and uses a “language” of his own, which we and his support workers and other family members have also learned and understand. So he can communicate with others, using his own voice.
the SP also manages his swallowing problems. Our son cannot chew food, so his meals are produced at home, following a plan made out for him by a hospital dietician. It is cooked, pureed and placed in containers every three days, a task which takes about three hours each time. He requires four pureed meals per day, which he eats while sitting in his wheelchair or his feeding chair, which was sourced by his speech pathologist and purchased with NDIS funding. He uses his communication skills to control his meals, and drinks from a special cup which he can handle independently (after years of learning and practice). He has to be fed by a carer; he cannot feed himself. As is common enough for CP people, he aspirates food. This means he could very easily choke to death or require hospital treatment for pneumonia. Many people require this annually or more; our son has NEVER had a lung infection of any kind and this is simply because he has always had an excellent speech pathologist, whose strategies and skills have prevented it. His life depends on accurate, highly technical, speech pathology.
The Equipment team (from Disability Services Commission WA). Our son uses: a wheelchair van, with hoist and up to date attachment straps, a wheelchair, a commode for showering, a change table (he has complete incontinence and uses pads), a standing frame (to maintain muscle health and prevent contractures ), a unique design of bed, constructed by TADWA, a feeding chair, a hoist for moving him around, and a range of small items used to maintain and develop his skills. The ET carefully examines and repairs, occasionally replaces, all of these equipment items, at least twice per year. She also trains his support staff in the correct techniques for using the equipment safely and correctly.
Respite services (Activ, WA). Our son has attended the same respite centre in Perth all his life, three days a month on average. This means my husband and I get a break from the physical work of lifting, carrying, positioning, etc., without which we would probably have been injured long since, possibly unable to care for him. If that happened, he would need to leave home and live in a group home, since he requires care 24/7, and this would cost the NDIS approximately THREE TIMES what his NDIS funding is currently.
Note: At each annual review the last 8 or so years (our son was in the pilot NDIS in WA), we, his parents, have requested NO INCREASE in funding. His funding is adequate to keep him alive, healthy and happy. That is all we ask.
Financial management
Self-management is an onerous task for parents and carers. Our funding is managed by AVIVO, WA. Our Avivo support worker phones us regularly, visits our home two or three times a year, and is always available to help if one of us gets sick or we need some support in the home for a short time.
Daily Program and Home Support (St Jude’s Disability Services WA)
Our son attends their centre in WA five hours per day, four days per week. He has a cognitive development program, a sensory awareness development program, a physio program, a nd instructions from OT and SP for his daily needs while he is there. His support workers follow a detailed set of instructions, provided by his therapists, as explained above, for all the activities he requires for his physical and mental well-being. As well as family, St Jude’s provide community experiences once or twice each week, such as using public transport, visiting special playgrounds, museum, art gallery, shops, long walks in his chair in natural environments and lots of social engagement in public, and at events such as music groups and art groups, as well as developing his relationships with friends at the centre, and with his carers there, many of whom are around his age, and he loves them.
The REPORTS from these service providers are ESSENTIAL to making funding decisions. They each provide an excellent, thorough, accurate and factual report for the NDIS each review period, and detailed discussion at the review meeting makes use of the facts they provide.
All the above therapists and services have staff that are deeply interested in our son’s welfare, his lifelong learning and development. Each one of them provides hours and hours and days of attention, skill and information. Their work guarantees his quality of daily life, his growth in skills and satisfaction and contribute enormously to his happiness. Everyone who knows him, including his GP, who monitors his physical health regularly, as there are risks to that, as I have explained, make the same comment: he is a delightful, happy and charming person, and they all love him. Everywhere he goes, with family or support workers, he runs into someone who knows and remembers him from school, from his previous day program, from the hospital, from the neighbourhood, a nd he greets them with pleasure when they come to speak to him. He loves people and people love him. He makes a subtle but very significant contribution to other peoples’ lives and to the community generally.
Almost everyone who is a participant in the NDIS scheme has a story as complex as this.
YET someone who has never met our son is going to visit him for less time than it has taken me to write this letter. They, and ONLY they, apparently, will make a report on the basis of which the NDIS will fund him.
Independent Assessments
Submission 223
i can see what will happen. The IA, an Allied Health Worker, we are told, perhaps a nursing assistant, with no apparent qualifications in the disability area, will turn up and look at him. He can’t talk, and they won’t be able to learn his 30 sound communication system on the spot, so they will ask US all the questions in their so-called standardised tests. We will have have to answer, because our son can’t in the time available (1-3 hours), and who knows if the questions in the tests/questionairres have any relevance to his condition or his needs? Or his GOALS. I would point out that the first 3 pages of his current and past NDIS plans are ALWAYS clear statements of his GOALS in life (to be physically well, to be free from pain and severe discomfort, to be interested and happy in his daily life, and to continue to make his unique contribution to the wellbeing of other people (quite a lot of other people).
I once saw him calm down two women who had collided their cars outside our house, and who were screaming abuse at each other. We just asked them to sit down with them on our verandah, and within ten minutes, their conflict was resolved and they were comforting each other. And both holding hands with our son, who was sitting between them on the couch. He does this kind of thing wherever he goes; you can ask anyone. There are a couple of Federal politicians currently and past who have fallen victim to his loveliness.
Most NDIS participants have histories and situations as complex as this. It is simply an IMPOSSIBILITY for someone from Aged Care or an Employment service, or a psychology practice, to see, understand, document and report on a person with disability. There will be thousands of inaccurate and inadequate Plans produced, so much suffering, so much stress, and some DEATHS. If our son is not correctly funded for his services as they stand now, he will DIE. It is as simple as that.
As simple as that.
Independent assessments are a totally hopeless idea. They have nothing to do with equity, and it will be a disaster not only for the disability sector but for the Government as well.
If there are inequities between geographical areas in the country regarding NDIS funding, then the reason for this must be researched, understood and dealt with, area by area. Otherwise, we will have a repeat of what happened with Robodebt: thousands of people impacted so badly in an attempt to catch out the minority who are rorting the system. Opening a peanut with a sledgehammer. Someone in the current Federal Government did that too. I must admit, despite two University degrees and two postgraduate diplomas, I have struggled with funding issues, the changes in funding processes over time and the process of advocating correctly in our son’s best interests, all while living in an area
where the necessary services ARE available. In many areas they are not. The NDIS says we are free to choose our own services, but first there has to BE a service around your area, and THEN you have to find a good one. ALL families and participants struggle with this. That’s what support co-ordinators are funded to help us with, and THEY DO. Or they should.
Please listen to what I have said. Please listen to the peak disability organisations. Please listen to NDIS participants and those who are trying to become participants. Please listen to those who cannot speak themselves, or write letters, or send emails.
On the website for participants in WA I have read a couple of comments which speak of utter despair, even suicide, as a result of this ridiculous and utterly useless idea. Not to mention the incredible waste of taxpayers’ money. If “independent assessments” go ahead, it will cost this Government government. The disability community is large, and its members and advocates are not going to shut up. That’s a lot of votes guys.
PLEASE THINK AGAIN. Independent Assessments are a pathway to Hell.
Yours sincerely
Joanna Hall