NDIA Accountability Project

Concerns about Independent Assessments for individuals with Myositis

‹ PrevPage 1 of 6 · Source p. 1Next ›

Submission to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments 2021

Summary: As a rare disease group we are concerned about the proposed introduction of Independent Assessments. Three of our members who had difficulties with accessing the scheme have outlined their thoughts and observations below.

Myositis is a medical term that describes inflammation of muscle tissue. The most common defined forms of Myositis are:

  • Dermatomyositis;

  • Polymyositis;

  • Inclusion Body Myositis; and

  • Juvenile Myositis.

The seriousness of these diseases lies in the fact that the body’s inflammatory response is turned against us causing our autoimmune system to attack and destroy our own muscle tissue. Once gone the muscle cannot be regenerated (permanent impairment/disability) and over time this can result in a progressive and cumulative loss of muscle that leads to further weakness and disability.

The Myositis Association -Australia Incorporated (Myositis Association Australia) was formed around 20 years ago. The Association is a not-for-profit charitable organisation. We have approximately 360 members nationwide. We are all adult members, although it is a disease that can affect babies and juveniles as well. The most prevalent form of myositis that we represent is Inclusion Body Myositis (IBM) and whilst there are other forms of myositis that are quite disabling, Inclusion Body Myositis is a slowly progressive severe muscle disease that usually affects people over the age of 50. It is a neuromuscular disease and the loss of muscle function is not unlike motor neurone disease. Ultimately it leads to disability with a high equipment need. Power wheelchairs, modified vehicles and hoists will be required. Help will be needed with transfers, showering, toileting, feeding, etc.

Gordon (Inclusion Body Myositis) resides

Queensland

Gordon applied to the NDS in early 2019. Was rejected in early March then spent a rather intense 6 months battling the decision enlisting the help of Muscular Dystrophy Queensland. Finally on 29 August 2019 he received a letter from Delegate of Chief Executive Officer NOIA advising that the earlier decision made on 1 March 2019 had been set aside and that as of 29 August 2019 he was a participant of the NDIS and can access support. It was found that he did meet all requirements to become a participant of the NDIS. The following is Gordon’s thoughts about the introduction of Independent Assessments.

Independent Assessments Comments

From my interpretation of the Consultation Papers and investigation of some of the associated links, it appears that the reasons for making the change as outlined within Current Challenges in the Consultation Papers could potentially be a benefit to participants, however I am concerned that the new process could have other impacts on potential or existing participants.

The Independent Assessment policy I feel doesn’t change much in regard to the existing policy with regard to acceptance and funding apart from maybe speeding up the initial access process. There could still be the same number of reviews due to unacceptance of NDS entry decisions or the funding provided.

The current being a person in NOIA interprets the documentation you send in from Health professional, etc and makes a decision on whether they feel you are acceptable for NDIS and you then meet with an LAC and submit requests and a person in NOIA make a decision on what proposed draft funding is allocated and you then go through the planning and funding process.

In the new policy an Independent Assessor provides their opinion to a Delegate in the NOIA based on assessment tools provided by the NOIA and the Delegate then makes a decision on whether they feel you are acceptable for NDIS and makes a decision based on the opinion on a draft funding to be allocated and you then go through the same planning and funding process.

With both the old and new policies, all applicants are required to provide information on their age, residence and evidence of disability. This includes advice from their treating health professional as to whether their impairment or impairments are, or are likely to be, permanent.

  • Results of the independent assessment will be provided to the access delegate and will inform decisions about the applicant’s eligibility to access the NDIS.

  • We will use the results of a person’s independent assessment to determine whether they have substantially reduced functional capacity to undertake any of the six activity domains in the NDIS Act. This will include consideration of environmental factors, the presentation of their condition (i.e. episodic) and whether they were having a typical day for them.

  • An independent assessment will allow us to determine where a person’s functional capacity lies on a continuum in relation to the wider Australian population. This helps us understand if a person’s support needs are best provided by the NDIS or other mainstream systems of support, such as the health system.

  • The information from the independent assessment will also be used to inform decisions about the need and eligibility for some specific supports such as Specialist Disability Accommodation.

As the access and funding is dependent on the opinion of the Independent assessors, it would be beneficial to know who will be accessing which disability group and what experience they have, etc or can any of them be utilised for any application assessment?

The documentation states the health care professionals will be from a range of areas including:

occupational therapists, physiotherapists, speech pathologists, clinical and registered psychologists, rehabilitation counsellors, social workers.

In my opinion we currently have enough problems with Doctors and Specialists understanding our situation and requirements, I would not like the last four assessing me and the others would need to not be newly out of University with little or no experience. As I have found even with Occupational Therapists, they all have different expertise and experience and this is a major factor for assessments for functionality, capability and requirements with assistive technology and home improvements.

Your own Allied Health professionals, Doctors and Specialists opinions on recommended requirements will only be taken into consideration during the planning, goal and funding allocation process after the draft plan and budget is provided and may or may not alter how the already provided funding is altered or utilised.

TRACY (Inclusion Body Myositis) resides South

Australia

Why I am concerned about NDS assessments: I find the idea of NDs doing independent assessments a great concern, as these will be done by personnel who have no idea about “every” condition that they are looking at. My current assessments for my condition are conducted by therapists and specialists that have been dealing with me for some period of time and have researched my rare condition and have an understanding of how it progresses and what supports I require. These people also see my progress over the months and years and are best fit to judge if I have made any improvements or how fast I am deteriorating.

To be seen by an independent assessor for approx. 20 minutes, is not going to give that person any idea of what the condition of the participant is, or how it affects them. Are these independent assessors going to have access to our specialised reports, and if they do, will they have time to read and digest the information in them, to best assess the participant? Will these independent assessors be the only ones to assess our individual needs and circumstances - will they have the knowledge to apply to what we do need and what our circumstances are? How will this affect our funding. If we don’t get enough funding, it is a massive undertaking, both mentally and physically, and time consuming, to get reviews done to fix inaccuracies in our support. The government needs to properly consult with disability participants and their families so that this change will benefit everyone, not just the government. What guarantee can the government give that we will not be worse off due to these independent assessments, as they are not conversant with all our conditions. From what I have seen of the NDIS in the short time (since last year), that I have been with them, it is a very slippery slope. I was initially rejected as they said that I did not fit criteria. This “assessment” was done by personnel that had no idea of my rare condition (and it took 5 months for them to say no). It was not until I got Muscular Dystrophy SA involved, did I get access to NDs. And I feel that I have been battling with them ever since, in order to get the supports that I need. If I have this much trouble with NDs personnel, what is it going to be like when I have to deal with independent assessors that have no idea of my rare condition and have too short a time to assess me correctly. Not to mention all

If the government is doing this as a cost cutting exercise, then they may find themselves in a lot worse off situation in the future, with a disability sector that is well under funded and supported. And that may well cost them votes.

Cassandra (Dermatomyositis) resides Victoria I am one of the 8 per cent of Australians who live with a rare disease. I fear Australians with rare diseases will experience more suffering and discrimination, shorter lives and profound poverty if we are forced to participate in the proposed NDIS Independent Assessments.

The quantity and quality of my life literally depends on me receiving ongoing NDIS funding to live semi-independently in a rented home. Without the NDIS, Centrelink & my dog (who is supported by a pet charity) I would probably suicide. I would end my life in a deliberately planned way if the NDIS funding ended because I could not bear to be forced into a nursing home. Nursing homes are unsuitable for people in their 50s. For those of us on lifelong chemotherapy/immunotherapy, they are pandemic death traps. Also, as a survivor of severe domestic abuse/family violence I cannot tolerate being controlled by individuals within systems that deny my autonomy. I will never ever again be invisible, voiceless and shamed into silence. My relatively young age, rare disease, and complex trauma necessitate that I live alone on the edge of the community away from disrespectful employees of systems which manage human beings as if we were commodities.

I am terrified by the possibility an NDIS assessor could disregard my insights and the expert opinions of my health and welfare team; then write a factually and interpretively wrong report rescinding my funding, leaving me with absolutely no right of appeal. No single individual, no sole system silo should be able to control me and my circumstances to this degree. It is eerily like the power still held by Family Court Report Writers in the Federal Circuit Court & the Family Court where parents can lose sole/shared care of their children based on a single report.

The complex and progressive characteristics of rare diseases such as the neuro-muscular inflammatory myopathies require multidisciplinary specialist assessments with flexible approaches to assessment, care/support. We must be granted equitable access to the NDIS and be guaranteed that assessments are undertaken in a collaborative manner with trained and supervised rare disease consumer advocates are present with the consumer & carer (if there is one). Often, we are too ill plus our carers are too worn-out to provide effective self-advocacy in the face of systemic ignorance, bias and bullying.

Page 6

I found the NDIS staff I encountered from 2019 to 2020 seemingly worked without any medical, welfare nor disability qualifications so therefore did not understand the medical and allied health reports supplied. Indeed, one worker selected an incorrect drop box category diagnosing me with rheumatoid arthritis (I do not have this) and rejected my application with no reference to any discernible clinical guidelines or disease specific impairment tables. The Myositis Association of Australia & Rare Voices Australia could step into this service gap by promoting the expertise of Murdoch University and the Australian National University research teams to commercialise their services for NDIS, Aged Care & Centre/ink consultancy & assessments. Unfortunately, I did not have such a resource. It took two applications plus 18 months of strenuous advocacy by me, my General Practitioner of 17 years, two specialist doctors and four Occupational Therapists for the NDIS to accept the correct diagnosis. Ironically, I was assigned by the NDIS to an Early Intervention stream, but by the time the actual plan started in May 2020 (nearly two years since diagnosis & 5 years since my acute deterioration) I was being described by doctors as on an “aggressive, treatment resistant” incurable disease and disability course.

Prepared by Frances Colley, New South Wales State Coordinator, Myositis Association Australia Inc.

                                                     www myos11is org au                                                                  I

                                                                         6