ME/CFS and the NDIS Group Submission

inquiry into Independent Assessments under the NDis By the joint standing committee on National disability insurance scheme

31 march 2021

Contributors

with anonymous personal contributions from members of me/cf’s & the ndis facebook group

1 INTRODUCTION 3

2 RECOMMENDATIONS 4

3 WHAT IS ME/CFS 6

4 RESPONSE TO TERMS OF INQUIRY 8

4.1 THE IMPACT OF SIMILAR POLICIES IN OTHER JURISDICTIONS AND IN THE PROVISION OF OTHER GOVERNMENT SERVICES; 8; 4.2 THE INDEPENDENCE, QUALIFICATIONS, TRAINING, EXPERTISE AND QUALITY ASSURANCE OF ASSESSORS; 9; 4.3 THE APPROPRIATENESS OF THE ASSESSMENT TOOLS SELECTED FOR USE IN INDEPENDENT ASSESSMENTS TO DETERMINE PLAN FUNDING; 11; 4.4 THE IMPLICATIONS OF INDEPENDENT ASSESSMENTS FOR ACCESS TO AND ELIGIBILITY FOR THE NDIS; 17; 4.4.1 INDEPENDENT ASSESSMENT 17; 4.4.2 ELIGIBILITY REASSESSMENT 20; 4.5 THE IMPLICATIONS OF INDEPENDENT ASSESSMENTS FOR NDIS PLANNING, INCLUDING DECISIONS RELATED TO FUNDING REASONABLE AND NECESSARY SUPPORTS; 24; 4.6 THE CIRCUMSTANCES IN WHICH A PERSON MAY NOT BE REQUIRED TO COMPLETE AN INDEPENDENT ASSESSMENT; 29; 4.7 OPPORTUNITIES TO REVIEW OR CHALLENGE THE OUTCOMES OF INDEPENDENT ASSESSMENTS; 32; 4.8 THE APPROPRIATENESS OF INDEPENDENT ASSESSMENTS FOR PEOPLE WITH PARTICULAR DISABILITY TYPES, INCLUDING PSYCHOSOCIAL DISABILITY; 33; 4.9 ANY OTHER RELATED MATTERS 34

Introduction

The ME/CFS & the NDI Facebook group Submission 352 Independent Assessments Submission 352

This submission is in answer to the Inquiry into Independent Assessments (IA) under the NDIS by the Joint Standing Committee on National Disability Insurance Scheme.

it is estimated that Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) affects 250,000 Australians. Of those, 25 per cent are severe or very severe and are housebound or bedbound. These severely and very severely affected sufferers require complex care and disability support services in order to maintain essential daily functioning and access to health care.

the ME/CFS & the NDIS Facebook group currently has more than 1,500 members. Many of our members fall into the severe or very severe category leaving them housebound or bedbound and unable to care for their daily living needs. many of these people are struggling to access quality disability support from the NDis, Aged Care Services or other Federal, State and Territory government services.

this submission will address the following terms of reference from the inquiry into independent assessments under the ndis:

a. the impact of similar policies in other jurisdictions and in the provision of other government services; b. the independence, qualifications, training, expertise and quality assurance of assessors;c. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;d. the implications of independent assessments for access to and eligibility for the ndis;e. the implications of independent assessments for ndis planning, including decisions related to funding reasonable and necessary supports;f. the circumstances in which a person may not be required to complete an independent assessment;g. opportunities to review or challenge the outcomes of independent assessments;h. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability; eand i. any other related matters.

2 Recommendations

We recommend that the Joint Standing Committee address the following in their review of Independent Assessments:

1. IA should not be made compulsory for the purpose of gaining access to the NDIS or
   determining plan funding.
2.  Reports from the participant’s/prospective participant’s treating professionals should
   continue to be considered as part of any relevant decision, including access assessments
  and reviews.
3. To ensure choice and equitable access to medical and allied health reports required for
 NDIS access, review and eligibility reassessment.
      •  NDIS or Medicare to fully fund medical and/or allied health practitioner reports,
         with professionals chosen by the participant/prospective participant.
      •   offering voluntary access to IA to those who choose one.
      •   universal access to Medicare funded Telehealth for those who need it.
4.  Improved guidance should be provided to doctors and health professionals on the
   information required in reports and assessments to enable NDIA assessors and planners
    to make accurate and consistent decisions.
5.  Eligibility reassessments should only occur in limited circumstances, such as evidence of
    fraud.
6. Any access revocation decision should not be based on evidence from IA. If access to the
 NDIS is revoked, support should continue to be funded during the appeals process.
   Additionally, the NDIS has a duty of care to ensure continuity of support from another
   service system if access is revoked.
7. NDIA to continue with bottom up planning and directly connect participants with a well-
    trained planner, who is required to read the information and reports supplied by the
    participant, prior to the planning meeting.
8. NDIA to recognise that people with a disability are experts in their own disability and to
   value and utilise the information that they provide as being of primary importance in
  making funding decisions.
9.  If IA are implemented assessors must only work within scope of practice and not be
   assigned to assess disabilities they are not qualified or experienced in assessing.
10. If IA are to be implemented, the NDIA must provide more information and evidence on
   the proposed model, how it impacts plan funding decisions and undertake further
   consultation on the design and implementation of IA.
11. "Nihil de nobis, sine nobis", "Nothing About Us Without Us!". NDIA needs to listen to
  and act on the concerns of participants when designing the NDIS strategic direction.

                                                                         4

Independent Assessments

Submission #32

ME/CFS & the NDIS Group Submission: Inquiry into Independent Assessments under the NDIS

Funding for a person’s own treating professional be provided so that a person with the appropriate understanding of ME/CFS can be chosen to complete a suitable assessment of function.
If IA are implemented, an appeals mechanism for IA results must be provided, that can be completed prior to any decision being made by the NDIA, based on IA. Participants must be given the option of getting an assessment, fully funded by the NDIS, to use in that appeal. If they do not have access they won’t have existing funds to pay for appeal reports.
If IA proceed, exemptions should be provided in all cases where harm may be caused.
If IA proceed, any decision on exemption from IA must be a Reviewable Decision.
The NDIA must not allow discriminatory practices based on excluding disability caused by health conditions. The cause of a disability must continue to be irrelevant for eligibility for NDIS access and the legislation must not be changed to exclude disability caused by health conditions.

The following sections give an understanding to the issues faced by people suffering ME/CFS when trying to access the NDIS and as part of their ongoing participation in the scheme.

3 What is ME/CFS

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS) or ME/CFS is a chronic, inflammatory, primarily neurological disease that is multisystemic, i.e. affecting the central nervous system (CNS), immune system, cardiovascular system, endocrinological system and musculoskeletal system. It has been classified as a neurological disease by the World Health Organisation (WHO) since 1969 (ICD- code: 10 G93.3¹).

Post-exertional Malaise (PEM) is a cardinal feature of ME/CFS. It is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune aregions.²

The level of exertion involved in triggering PEM will vary depending on the severity of the inindividual. The more severe the ME/CFS, the less exertion it takes to trigger PEM. In severe cases, the exertion that triggers PEM may be as simple as taking a shower or walking. In very sSevere cases it can be as simple as having a conversation or brushing teeth.

Persistent or repeated exertion may lead to a deterioration of health and greater functional decline. Acute exercise can negatively impact neurophysiological processes in ME/CFS contributing to an exacerbation in symptoms including severe fatigue, headaches, muscle aches, cognitive deficits, insomnia, and swollen lymph nodes.

ME/CFS is often a relapsing-remitting disease with new symptoms occurring either in discrete relapses (or “crashes”) or accruing over time.³ The National Organization for Rare Disorders (NORD) states: “Symptoms and their severity can fluctuate over the course of the ilness, even from hour to hour.”⁴ The US National Institutes of Health notes that sensitivity tonoise, light and chemicals may force patients to withdraw from society.⁵

Symptom Severity and Impact

For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s promorbid activity level6.

1 http://apps.who.int/classifications/icd10/browse/2010/en#/G90-G99 2 M, Carruthers B., van de Sande M. I, De Meirleir K. L, Klimas N. G, Broderick G, Mitchell T, Staines D, et al. (2011). “Myalgic Encephalomyelitis: International Consensus Criteria.” Journal of Internal Medicine 270, no. 4 (n.d.): 327–38. https://doi.org/10.1111/j.1365-2796.2011.02428.x. 3 Tucker, Miriam E. “Postexertion ‘Crash,’ Not Fatigue per Se, Marks Syndrome.” Medscape Medical News, November 4, 2016. 4 National Organization for Rare Disorders (NORD), and Jason A. Leonard. “Myalgic Encephalomyelitis.” National organization for Rare Disorders (NORD). Accessed May 21, 2018. https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ 5 “ME/CFS - Pathways to Prevention - Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue syndrome.” National Institutes of Health, December 8, 2016. https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs. 6Carruthers, M van de Sande, B., Myalgic Encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners, International Consensus Panel, 2012, http://emerge.org.au/wp- cntent/uploads/2014/06/Myalgic-Encephalomyelitis-International-Consensus-Primer-2012-11-26.pdf

Mild (meet criteria, significantly reduced activity level),

Moderate (an approximate 50% reduction in pre-illness activity level)
Severe (mostly housebound) or
Very Severe (mostly bedbound and needs help with basic functions). Those who are very severely affected are too ill to attend regular medical appointments.

Approximately 25 per cent of people with ME/CFS fall in the Severe and Very Severe categories and have severely impacted functional capacity. Those at the severe end in terms of symptoms can remain housebound or bedbound for months or years.

Being severe and housebound means leaving the house is either impossible, or causes major triggering of PEM symptoms, that the person can only go out less than once a week on average.

Being very severe and bedbound means the individual must spend all, or nearly all their time lying in bed. This may or may not include being able to leave bed for toileting, bathing, and some other minor activities.

It is also important to note that there can be a marked fluctuation of symptom severity and hierarchy from day to day or hour to hour.

ME/CFS can cause profound disability in those affected, and affects many aspects of life. In the young, for example social and school life can be severely impacted. In those of working age, many are unable to maintain employment due to their illness. Social and family life is often drastically restricted which causes strain on relations. As a result, many lose contact with pre-illness friends and non-supportive family members.

A person with ME/CFS may be able to do an activity one day but not be able to repeat it the next day. If they do repeat it the next day, it may take considerable time to recover. An example would be a shower:

A person with Severe ME/CFS may have a shower; however, they may need to rest for considerable time afterwards and may not be able to undertake another activity on the same day such as leaving the house for a medical appointment. They may not have the energy to have another shower for two to three days.
A person with Very Severe ME/CFS may need to be sponge bathed, and even that level of activity would need to be carefully managed as sensory input may cause PEM and take days to recover.

Response to terms of Inquiry

4.1 The impact of similar policies in other jurisdictions and in the provision of other government services;

Independent Assessments have been introduced in other jurisdictions, mainly in accident insurance or compensation schemes. These schemes have a different focus than the NDIS. They deal with trauma and injuries resulting from accidents. They do not include disabilities that arise from birth, genetics or disease and therefore do not deal with all disability types and functional impairments.

Accident compensation schemes focus on restoring the person back to their pre-accident capacity. They do not deal with conditions that are fluctuating or are progressive in nature.

Even then some implementations of Independent Assessments have had disastrous consequences. In the UK, standardised assessments7 led to 2,380 people dying between 2011 and 2014 shortly after being declared able to work.

A review by Professor Malcolm Harrington in November 2010 found that:

The system was impersonal and mechanistic.
It lacked transparency and that a lack of communication between the various parties involved contributed to poor decision making and a high rate of appeals. This indicates a high level of dissatisfaction with the outcome.
That some conditions were more difficult to assess than others. Subjective conditions such as mental health or fluctuating conditions fared worse. Some descriptors in the assessment did not adequately measure or reflect the full impact of such conditions or the individual’s capacity for work.
The system lacked empathy in the process management and support of the participant. This led to communication issues where the participant did not understand the result and support available.
Assessors had difficulty assessing participants with mental, intellectual and cognitive impairments.

The ME Association (MEA), a UK national charity found that people with ME/CFS had a great deal of difficulty in obtaining sickness and disability benefits when benefits were first assessed or later re-assessed, even when they were fully supported by their GP or Specialist.8

MEA found the assessments focused on capabilities involving a variety of tasks at single incidences and then assumed that this capacity was repeatable through a period of work

4.2 The independence, qualifications, training, expertise and quality assurance of assessors;

Large companies and their staff who are relying on continuing contracts from the NDIA cannot be considered independent. Especially when companies like APM also act as NDIS partners in the community that provide Local Area Coordinator (LAC) services. This is not independence.

At face value, the qualifications of the assessors are appropriate but each profession is only able to assess within their scope of practice. To do otherwise would be unethical and unsafe. The NDIA plans to send any assessor to any participant/prospective participant. A physiotherapist could be assessing a person with psychosocial disability, a social worker a person with quadriplegia with high level nursing care requirements, a psychologist could be assessing someone with ME/CFS. None of these are appropriate matches and will result in bad outcomes.

The NDIA has said the assessment will be disability neutral, but it is not possible to adequately assess a disability without appropriate expertise in the functional impairment that is being assessed. Any assessor of a person with ME/CFS must understand PEM and that overexertion and sensory overload leads to harm to the person.

“I have found it quite difficult to find allied health professionals that are truly knowledgeable and well informed about ME/CFS and are up-to-date with current research and best practice management of the associated disability of this condition. I make this statement about allied health professionals who are in the correct area to be involved in management of ME/CFS, yet the proposed Independent Assessments may well be carried out by an allied health professional who is not from a relevant area of specialty. So, potentially I could have an assessor come to my home who does not adequately understand my disability, because they work in an unrelated area, yet this person has the job of assessing my disability. I am very concerned about the accuracy and implications of such an assessment”

~ Anonymous, participant with ME/CFS

Page 10

It is rare to find an allied health practitioner with expertise in ME/CFS. Experience from independent assessments of people with ME/CFS in other insurance schemes has shown a great lack of understanding. Problems that have arisen include:

misconception that people with ME/CFS recover
misconception that ME/CFS is a functional disorder hence only requires cognitive behaviour therapy and graded exercise therapy
misconception that ME/CFS is a psychiatric disorder
beliefs that people with the condition should not be encouraged to adopt a sick role hence require no supports.

A full assessment requires multiple skills. Most of the assessors will not possess all the skills required for the proposed assessment. For example, while an Occupational Therapist or Physiotherapist may have the skills to skilfully observe a mobility disability, other professionals included in this IA scheme will not.

“It is incredibly difficult to find an allied health professional, such as a physiotherapist or exercise physiologist, who understands ME/CFS. They are trained to believe that exercise helps everyone. However, exercise can be extremely harmful for people with ME/CFS and this can be difficult for allied health professionals to understand. I am concerned that if I am assessed by someone unfamiliar with ME/CFS, their lack of knowledge will ultimately limit plan funding and potentially, call into doubt my NDIS eligibility”

~Anonymous, NDIS participant with ME/CFS

The NDIA has said that assessors will have at least 12 months experience. However, recent SEEK job advertisements for the already contracted assessor positions encourage graduates to apply. Lack of experience will lead to poor outcomes for participants and prospective participants.

Substantial training will be required in the administration of the scales in order to preserve the reliability and validity of the scales when they are used on the populations they have been evaluated on.

Already, there have been reports on social media of cases where IA trial participants have been administered scales that have been changed either in the actual questions or the prompted context the participant should answer the question for. Even if assessors are consistently and correctly administering the assessments, most scales will not be reliable and valid for most participants, due to not being developed and tested for those populations.

4.3 the appropriateness of the assessment tools selected for use in independent

assessments to determine plan funding;

The toolkit that has been published by the NDIA is not suitable for measuring functional impairment in people with ME/CFS and the diverse disability groups in the NDIS.

Issues include the proposed assessment tools are not designed or tested for the broad NDIS population. For example:

The Vineland is designed for autism and intellectual disability. It does not measure physical disability.
The CANS is designed and validated only for traumatic brain injury patients.
The WHODAS 2.0 has had limited testing in the ME/CFS population and is not suggested as a useful assessment for the ME/CFS population. 9

Fluctuations in function will not be measured nor will the opportunity-cost of doing the assessment. In order to do the assessment, a person with ME/CFS will need to forgo personal care or social activities not just on the day of assessment, but in the lead up and recovery from the assessment.

“First meeting with lovely OT for history, paperwork- 2.5 hours. ..lovely lady…cognitively and physically melted during the meeting…5 days bedbound after.”

~ Anonymous, NDIS participant with ME/CFS

To use a single snapshot in time taken by an assessor who does not know the participant or their goals is not appropriate to determine plan funding.

The WHODAS 2.0 only assesses function in the previous 30 days and does not detect fluctuations within that time period, nor is it predictive of the next 5 years of function which is very concerning given the NDIA intends to determine funding for that period based on assessment results.
The NDIA states that the episodic nature or fluctuations are considered, but have provided no evidence of how this will be done.

The assessment does not measure energy impairment. The assessments do not consider that a person may be able to complete an activity in isolation but cannot do several activities collectively.

For people with ME/CFS, it is a choice as to which activity, if any, they will spend their limited energy budget on, in any given day. Overall workload is not considered in the

Assessments

assessments and therefore, will not be considered in determining plan funding if the IA result is the sole determinant of funding. If a person can complete essential activities of daily living in isolation then they may not get NDIS access or receive support for those activities. This does not consider that doing those tasks comes at the cost of other essential basic tasks or ones that bring quality of life such as social activities, employment or study. It is also important to note that performance of an activity on one day, does not necessarily mean it can be repeated later in the same day, the next day or the following week.

“Even though a person may have the same result in the assessment the reality is the disability can be very different for each person. These standard assessments do not capture this unique individuality for which the NDIS was designed. Instead, it’s a return to the abusive and discriminatory opinion of able-bodied people without understanding or experience with disability.” ~ Anonymous, NDIS participant with ME/CFS

Risk of harm from being assessed is also a huge concern for people with ME/CFS. To have to undergo assessments at least every five years and a minimum of three monthly is asking too much. For someone with ME/CFS, having a short conversation can in itself have an extremely damaging impact on their condition. Add to that the stress of being assessed by a stranger, where the outcome is vital, and there is a high chance that the assessment process itself will result in increased disability that may be permanent and lead to greater cost to the NDIS, as well as greater suffering to the individual and their family.

Participants who cannot cope with the ongoing demands of being a NDIS participant, including potential frequent assessments, may choose to end their lives instead. Suicide is already seven times higher in the ME/CFS population than the wider population.10

It is also concerning that a participant will not be undertaking the assessments voluntarily. It is very likely that those being assessed will be pushed to complete tasks they cannot safely do. Knowledge of ME/CFS by therapists is often limited or, worse, they are under mistakenly held beliefs about ME/CFS that can result in unsafe practice. For this reason, persons with ME/CFS must be very careful about who they see to ensure the practitioner understands safe practice as overexertion needs to be avoided. With IA, the person will have no choice or ability to screen unsafe practitioners out.

“The NDIS promotes choice and control for participants. I want to choose who I engage to assess me. I want to choose someone who I feel comfortable with, who understands my condition and most importantly, someone who is working with me and for me, as opposed to someone who is being paid by the NDIA to deliver outcomes for the NDIA.”

~Anonymous, NDIS participant with ME/CFS

“ I saw a new Physio when I first got NDIS access. She said she knew about ME/CFS. She instructed me to do some exercise as an assessment. I told her that the assessment would harm me but she still pushed me to do it. Being a good patient I complied and paid the price of 2 weeks in bed feeling awful and barely able to get to the bathroom.“

~Anonymous, NDIS participant with ME/CFS

Sensitivity to chemicals is a major issue for many with ME/CFS so they require that no chemicals enter their homes on visitors. This includes residues of shampoo and washing powder and deodorants. Visual sensitivity can also make video assessments impossible. If IA are compulsory those with severe ME/CFS and Multiple Chemical Sensitivity (MCS) may be excluded from much needed support as they are unable to complete the process.

Involvement of family and friends in the assessment as a compulsory component is also causing much concern.

The Vineland requires someone who knows the person being assessed well, to report to the assessor while the person being assessed is not in the room. Finding someone who can accurately answer all the Vineland questions is also difficult.

For many people with ME/CFS, their impairments are hidden from family and friends as they retreat to rest when they are at their worst. That funding will be determined by the answers given, without the participant having the opportunity to correct mistakes, is very concerning.

Having this person involved in the process is degrading for someone who is insightful and capable of communication. It also reduces a disabled person’s independence and is contra to the mission of the NDIS to promote independence. It can also risk damage to the relationship between the participant and their family or friends. A support worker reporting on your function is also not appropriate and can make for a tricky employer/employee relationship.

Page 14

The NDIA has said it will assist a person to identify someone to answer such questions if you do not nominate someone. If you cannot identify someone who knows you well, surely the NDIA will not be able to find someone suitable.

“I strongly disagree with the part of the Independent Assessment involving the assessor speaking to someone in my life, asking questions about me, without me present. I don’t have anyone in my life that I am confident could accurately answer questions about me. Although I live with a friend, her knowledge of my condition and how it impacts me, is quite limited. I have a support worker once a week, but I keep her busy doing things to support me, not chatting about my impairments. These are the two people that see me the most and I am not comfortable with either of them speaking to an assessor about me.”

~Anonymous, NDIS participant with ME/CFS

“I am very concerned about this part [the Vineland]. I have my flatmate who has lived here for 18 months, I’m not sure he knows me well enough to be accurate … And I have my support workers who I am also not sure they would do an accurate job. I hate the whole idea of people answering questions about me with me having no chance to correct things if they give incorrect answers … it’s my life, I’m the one who knows this stuff, shouldn’t I be the one who’s the authority here?”

~Anonymous, NDIS participant with ME/CFS

As even a short assessment period will damage health an assessment could take them months to safely complete which is an unreasonable amount of time when they have other important tasks they will have to neglect such as personal hygiene and other self care activities. There is also the negative impact these assessments will have on people’s social participation which goes against the purpose of NDIS.“>

~Anonymous, NDIS participant with ME/CFS

“I live alone, my family do not live close by, and my support workers are scheduled to come in at times of day when I am more functional. There is no one who really knows me, and my daily levels of functioning, “well”. I strongly

Page 15

object to an assessor gathering information from a source that cannot provide truly accurate feedback, especially when I do not have a disability that requires this to occur. I am the best source of information about the disability that I live with everyday.”

~Anonymous, NDS participant with ME/CFS

“Having to have another person answer questions about me without me in the room seems an outrageous request with an implicit mistrust of me as the patient being the most reliable source of information about myself!”

~Anonymous, NDs participant with ME/CFS

The assessment length is also of great concern. Three to four hours is a significant amount of time and energy for a person with ME/CFS. The process could do significant damage to a person with ME/CFS.

It will impact personal care and also take energy away from therapy to maintain function and any social participation they may have. Some people with ME/CFS may only tolerate five to ten minutes at a time. Others may cope with half an hour a week and that will be the only activity for the period. This assessment could take months from their life. Repeating these assessments every five years or less is demanding too much of people whose activity is severely limited. This is the opposite of what NDIS is meant to achieve.

“Having access to the NDIS has enabled me to live at home and not have to move into a nursing home - as I am dependent on the care of support workers to cook, clean, shop, assist with life admin. And more.

The prospect of facing an independent assessment that may result in my access to the scheme being revoked or my funding reduced is already causing me a great deal of stress and anxiety.

I am only well enough to have a significant conversation of a maximum of 45minutes occasionally (ie; not on a daily basis) so a longer assessment meeting would not be possible before my brain function diminishes and symptoms flare. Even so I need to sleep for at least two hours after such a conversation.”

~Anonymous, NDs participant with ME/CFS

While consistency of information is desirable, the IA process is not the way to ensure this, as there’s no point in having consistently inaccurate information. Further guidance to therapists on the assessments preferred for each disability type and assessment templates would be a good start.

Training for access assessors and planners in utilising information and taking the time to read all documents would also improve consistency.

Treating doctors and therapists should be able to provide relevant, detailed information and professional judgement about their patient alongside information gained from any specific assessments. The complexities of the individual must be considered when making an access or planning decision.

“My application relied heavily on my GP’s report as she had known me for years and so had seen evidence of my impairments e.g. mobility device, lying down in waiting room, short term memory loss- making appointments and forgetting to attend and remaking them when reminded by reception and forgetting to attend again. It is impossible to see how a one off visit by an IA would capture my level of disability. I included a CPET report which clearly demonstrated my physiological disability however the NDIA paperwork stated that this was not considered. Kinda weird as this was the only objective measure of my impairment.”

~Anonymous, NDIS participant with ME/CFS

The assessments the NDIA plan to use are not designed for determining funding. The NDIA has not given any information on how plans will be funded based on IA results. The have also given no indication of what level of funding will be determined Reasonable and Necessary in the proposed system and what participant characteristics will determine the funding level and whether it will be adequate.

The primary factor that is missing from the proposed IA is in determining what supports are required to achieve the participants goals. The goals have been removed from consideration. This also means that the supports needed to achieve the person’s goals are not considered or recommended.

It is hard to see how this system will benefit participants, it is geared to reduce spending and will lead to poor outcomes for participants and prospective participants.

4.4 the implications of independent assessments for access to and eligibility for the NDIS;

4.4.1 Independent Assessment

IA are not the solution to making access to NDIS equitable. IA only address part of the access requirements and will add additional barriers for some people whilst removing barriers for others.

Under the IA proposal, the IA will not provide any assessment of permanence criteria so prospective participants will still require reports and forms filled out. For people with ME/CFS this is often difficult or impossible. Barriers include:

cost of consultation and report writing
inadequate Medicare rebates
lack of access to in-person medical services for people due to geography and/or disability as many with ME/CFS are home bound or bedbound or can only travel short distances, and
while Telehealth has been welcomed, access has been restricted to people who have seen a doctor in-person in the clinic within the last 12 months, so people who are homebound and bedridden still have no access..

“My first two applications for the NDIS were rejected on the basis of permanency. For my third application I thought it might be supportive to include a specialist report. However, I live rurally and for the last 3 years I have not had the strength and stamina to travel to the nearest built-up area in order to access specialists. I hoped that current telehealth options might allow me to access a specialist by telephone. I contacted seven (7) specialists and none of them were willing to offer me a first consultation by phone. This means that unlike other people who do not have my level of impairment I am unable to access specialist reports in order to support my NDIS application. Ironically, if I had more support I might be able to access the specialists but I would need the NDIS in order to do so.”

Anonymous, prospective participant with ME/CFS

Another major hurdle is that many doctors don’t understand the requirements and language NDIA requires. Patients spend a great deal of time and energy learning the system to ensure a successful access request. Those that are unable to do so, or do not have a support person to do so, are greatly disadvantaged. The recent addition of more detail to the Access Request Form will assist with this but greater education of doctors and more flexibility in language accepted by the NDIA is required.

“I had to learn the NDIA language and then write draft reports for my GP in NDIA language. Having worked for the government before becoming disabled I realised how to link my disability and needs back to the legislation but why is this necessary?

I contrast the NDIA experience with the Qld community service who on receipt of a letter from my GP organised a raft of support and care and allied health visits. I did nothing other than leave my front door open so that they could call and enter they did help and support arrived and after 6 months of no bed changes, no showers and frozen food I obtained cleaning, social support and garden maintenance.

It had taken me months to have the energy to get through the on hold system that made me ill whenever I tried to call. At that point in time I could never have coped with the NDIA!!!!“

~Anonymous, NDIS participant with ME/CFS

The next hurdle people with ME/CFS face is that often assessors will not accept permanence unless Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) have been completed.

These recommendations are based on widely discredited research and there is evidence such treatment is harmful to people with ME/CFS. Other jurisdictions such as the USA have removed these as recommendations from treatment guidelines. In the UK last year, NICE released draft updated guidelines that also remove CBT and GET as treatment recommendations. Final NICE guidelines are expected in August this year.

New Australian guidelines will be developed by the NHMRC, but there is no timeline on when that will commence and be completed. People with ME/CFS urgently need these harmful “treatments” to be removed as hurdles to gaining NDIS and Centrelink support.

“My experience with Access Request was extremely difficult and frustrating because assessor didn’t read any information I provided and continuingly ignored my request for email communication and postal address.

My request has been escalated to Internal Review with the support of a Senator’s office.

It was shocking to see that the assessors prior to that point was acting like an illegal sales rep for Fatigue Clinic. None of their push for GET and CBT was

Page 19

recorded on my file, and the only record on my file was that GET and CBT are not treatment for ME.

If assessors read evidence and information properly at the first place, the consideration for introducing IA should not be necessary.”

Anonymous, Prospective NDIS participant with ME/CFS

The proposed IA do not adequately assess function and are not validated for use in the broad NDIS population, nor as a collective assessment to determine access to the scheme or funding. The NDIA has provided no data comparing the IA process and the current access process to show reliability and validity of this approach. It has also failed to provide information on how the IA results will be used to determine access.

There is no scope for clinical judgement and all areas of disability are not assessed, nor are the nuances of an individual’s function assessed. There is no measure of fluctuations in disability which is very concerning for people with ME/CFS whose function can change greatly in short periods of time.

In addition, as health professionals are widely ignorant of ME/CFS and the delayed impact of over exertion causing PEM, this ignorance is highly likely to also be reflected in IA results. A person with ME/CFS may be able to perform a task on the day but is unable to for the following two weeks. The NDIA doesn’t understand this, nor do they understand that doing a particular activity is often a decision about priorities and means many other activities must be stopped in order to complete a priority task. It would be shameful if the NDIA and the independent assessor prioritises their assessment, over a person’s safety.

Currently, energy impairment is not adequately assessed in access decisions. The new assessments will also not adequately assess the impact of energy impairment. For example, a person with a mobility disability such as paraplegia or a sensory disability, may access NDIS supports when they are living a full life with full time employment and an active social life. They can receive support, yet a person with ME/CFS who can manage only 15- 20 minutes of activity per day, including some personal care, and is only able to walk 100 metres if necessary, but not without causing PEM, may get denied support because their overall function is not taken into consideration. Only performance on isolated tasks is considered. Until global function and limitations are adequately assessed, there will not be equity of access for people with disabilities such as ME/CFS.

Access to functional assessments for the purpose of applying for access to the NDIS are cost prohibitive for many, with OT reports costing anywhere from $600-$2,000. Funded IA will go some way to reducing this barrier.

However, it would be far more appropriate to fund a treating therapist to do a complete assessment, as they will have a much better understanding of the individual, will not need as much time to assess them if they already have their history, and can account for

Eligibility Reassessment

Having already established permanence and substantially reduced functional capacity to gain access, often at significant cost both financially and to a person’s health, it is unreasonable and unnecessary to constantly reassess eligibility.

ME/CFS can be a fluctuating condition that may stabilise or improve a little with sufficient support or it can be a progressive condition where continued over exertion leads to substantial loss of functional capacity.

To remove the support if someone is doing well is counterproductive. They will deteriorate as soon as support is removed and they are required to do more than is safe in order to survive. This will lead to increased disability that may be permanent, even once support is reinstated.

If a person is managing well then NDIS support should continue at the level they require. If a person’s condition is progressive, increased support may be required over time. If they require less support, then reduce support, but do not remove support entirely.

Removing support altogether when the only other support available is Aged Care is not only unsuitable for the individual, but will cost the Government more in the long run as the stress, appeals, reduced support and financial burden takes its toll on the person’s function.

In addition, Aged Care is often inaccessible due to Aged Care staff not knowing about Under 65 Aged Care and long waiting lists for support packages. Aged care also has co-payments which may be reasonable for an ageing person, but a younger person with years

To live needs to retain any capital they have for essentials such as medical treatment and housing.

“I was refused NDIS access because I ‘can walk’. I was barely able to leave the house. I was told I was ‘better suited to Aged Care’. I was in my early 40’s. The person at My Aged Care call centre hadn’t heard of Under 65 Aged Care but quickly found the information, my local ACAT though flat out refused to accept that it existed. They refused to assess me saying ‘We will never help anyone under 65 with chronic fatigue!’. I was hitting brick walls in every direction.

I had to stay with my ageing disabled parents for 6 months as I simply could not manage to survive in my own home any longer. This was an enormous workload for my mother. I reapplied and got NDIS access so I could finally go home. It shouldn’t be so hard to get help.

The sad thing is that if NDIS had helped me when I first submitted my access request I’d not have deteriorated so much and I wouldn’t now need so much support. If it had been easier to apply then I’d have applied much sooner and would not now be mostly house and bedbound and would be able to have a social life“

~ Anonymous, NDIS participant with ME/CFS

It is stressful and uses a lot of energy to apply for NDIS in the first instance. Living with the ongoing stress that supports can be taken away at any time is counter to the guiding principles of the Act particularly guiding principle 3 “People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime”.

“As participants, we have already undergone a long and arduous process to prove eligibility for NDIS, including permanence and substantial reduction in functional capacity. It involved my treating health professionals, who have been involved in my care for many years, outlining the evidence of why my disability is permanent and significant.

It took me over 6 months to recover from exceeding my energy limits due to the demands on my energy that applying for NDIS took.

The idea that one Independent Assessment, carried out by someone who has never met me before, can overturn the evidence provided by doctors and

Page 22

specialists who have been involved in my care for many years (even decades) is very worrisome.

I have already proved eligibility for NDIS, at great cost in terms of additional loss of functioning and well-being, and was told that NDS provides lifelong care, so I thought I would never have to go through that harrowing process again! These proposed changes also indicate that the assessors will never make a mistake or come to an incorrect conclusion, as a participant can’t appeal against the assessment, only against decisions made based on that report.

The participant can also not access the entire assessment report, so how can a fair appeal be made if there are errors but the participant is not allowed to see them in order to correct them! For persons who have already proved the permanence and significance of their disability, this is unfair and unnecessary.”

~Anonymous, NDIS participant with ME/CFS

We are also concerned that the NDIA staff making decisions to refer a participant for eligibility reassessment are not sufficiently qualified for the task. The checklist (Appendix 5.1) the NDIA was using in 2020 to determine referral for eligibility reassessment required a planner or LAC to determine if a person has a “health condition”, with “chronic health conditions” included in this. For people with ME/CFS this can easily lead to an unnecessary reassessment. LAC and planners lack the medical knowledge and qualifications to answer such questions.

LAC and Planners are also not qualified to answer questions regarding permanence and “if there’s any clinical, medical or other treatments that would likely reduce or eliminate disability related functional impairment”. Note that the key words from the legislation, “appropriate” and “evidence based”13, were omitted in the checklist. Guidance is given in the checklist that Chronic Fatigue Syndrome and several other specified conditions are “unlikely” to meet these criteria.

Considering all participants, other than those who gained access via List C, have already established permanence to gain access it is more than likely that people with these conditions would meet the permanence criteria. It is also an odd and inaccurate statement given there is no approved treatment or cure for ME/CFS14 and considering that complete recovery is “uncommon (6 per cent)”15. The RACP guidelines also state that at the severe

Independent Assessments Submission #354

The end of the spectrum “prognosis is poor” and in people who have been severely disabled and unable to work for more than five years, the probability of substantial improvement (note, not recovery) within 10 years is less than 10–20 per cent. Impairments from ME/CFS are more likely to be permanent than not permanent.

The NDIA explained this guidance at Senate Estimates as meaning “may not” which is very different to “unlikely to”. Either way, the direction is inaccurate and inappropriately targeting participants with ME/CFS to undergo the stress and major energy drain which is contraindicated can cause permanent damage and expense of an eligibility reassessment.

Around April 2017, I applied for NDIS access to help support me with my ME/CFS. It took 22 months and included a long legal battle with the NDIS to gain access. One week before the matter went to hearing, the NDIS conceded and I was finally given full access to the NDIS scheme via the Administrative Tribunal (AAT). It was stated I met all of the eligibility criteria. After what was one of the most exhausting, frustrating experiences of my life, I thought this struggle was finally over.

However, in 2020 the NDIS turned this relief into horror by putting me through an eligibility re-assessment process. I was never told the reason for a redacted: s47F - personal privacy assessment – and despite three requests having been made to receive a cannot be read call from the NDIS to have the reasons explained and try and determine because it’s redaction whether this was triggered in error, I still have not heard back. The matter was escalated within the NDIS by one of the ME/CFS peak bodies – however, upon speaking to the National Access team it has been made clear to me that things have should have never gotten to this point in the first place given my previous deliberately withheld progression through the AAT process.

The eligibility reassessment was triggered by a AT assessor who decided my yet another name condition was medical rather than a disability, even though I had been through AAT to gain access.

As a result of being put through these processes, I have suffered considerable stress and my functional capacity has deteriorated significantly. As my condition is progressive I am unlikely to ever recover that function.”

~Anonymous, NDIS Participant with ME/CFS

Any revocation should occur only in cases such as where there is strong evidence of fraud or miraculous cures due to a prior misdiagnosis. Removal of all supports due to any increase in capacity is not only not in accord with the guiding principles of the Act, a redacted: s47F - personal privacy but also greatly detrimental to individuals and society with cost shifting to other areas of government spending.

Independent Assessments

Submission 332

“It is extremely difficult to find a GP let alone an allied health professional who comprehends the enormity of the functional incapacity and limitations that this illness causes and the ramifications of exertion beyond one’s body’s tolerance level and if the complex interrelationship between physical, cognitive and emotional activity, sensory stimulation, digestion, brain function, muscle function, sleep cycles and temperature regulation and more! This is a truly complex condition with many variables which is extremely poorly understood by many health professionals.

Maintaining ones mental health when one has lost one’s capacity to work, self-care, be financially independent and socially engaged let alone pursuing hobbies is very difficult without the enormous stress that comes with the uncertainty that is implicit in having an independent assessment that may result in the revocation of the lifeline of support which makes ones life only just bearable!”

~Anonymous, NDIS participant with ME/CFS

The NDIA proposes no means of appealing the IA or requesting an additional assessment if the first one is inaccurate; this leaves us concerned that people will be unfairly denied initial access to the NDIS and ongoing access to support.

Should the NDIA revoke access, they have a duty of care to ensure a person is adequately supported by other, affordable government services before removing NDIS support.

A person should continue to be fully supported by NDIS whilst any appeals of the decision are underway. Legal representation should also be provided for anyone appealing an NDIA decision at the AAT.

The NDIA plans to use IA for determining the Reasonable and Necessary supports that participants will receive. Currently, a bottom up approach is used where individual supports are decided on their merits to build the plan. This approach is in line with current legislation.

Section 33 of the NDIS Act (2013) requires that the determination of supports considers reports from professionals AND the person’s goals. Section 34 requires that the CEO must be satisfied that “the support will assist the participant to pursue the goals, objectives and aspirations in the participants statement of goals and aspirations”.

The IA determined funding will not consider the person’s goals nor will it determine what supports a person needs to achieve their goals. No recommendations of suggested supports

Independent Assessments

Submission #392

The text below discusses concerns regarding the NDIA’s approach to Individual Assessment (IA) processes.

A will be included in the IA process. Instead, it will be a top down approach of making a person’s needs fit within an allocation.

Supporting participants to achieve their goals is a fundamental part of the scheme as is having the broadness of “reasonable and necessary” to ensure participants are not limited to a set of prescribed supports. Any change to legislation that redefines which supports are to be funded is a backward step.

The NDIA claims that their IA program is recommended by the Tune review. This is not true. The recommendation was that voluntary IA be offered to ameliorate the cost burden of gaining access to the scheme. The Tune review said, “…This change in approach will require extensive consultation with participants, the disability sector, service providers and the NDIA workforce.” Sadly, the NDIA has failed to heed this advice with token consultation occurring only after the disability community objected loudly to the plan. The NDIA announced tenders for the IA providers just a few days after submissions closed, further showing their lack of interest in genuine consultation.

Tune also recommended a number of cautions and safeguards including, “participants having the right to challenge the results of the functional capacity assessment, including the ability to undertake a second assessment or seek some form of arbitration if, for whatever reason, they are unsatisfied with the assessment and the NDIA-approved providers being subject to uniform accreditation requirements that are designed and implemented jointly by the NDIA and appropriate disability representative organisations”. The NDIA is not following this advice.

The NDIA has not released any information on how the assessment results will determine funding and how that is benchmarked to be “reasonable and necessary” for someone in those circumstances. There has been no modelling released comparing current bottom up planning with this new top down approach. This gives no confidence that the funds allocated by this new methodology will be adequate for a participant’s needs.

The concerning part of the limited information the NDIA has provided, is that they expect what is currently deemed reasonable and necessary for some participants, will be less than the IA algorithm determines is reasonable and necessary. Additionally, the participant “will be supported to move to their new level of funding more gradually, to reach the reasonable and necessary level of funding informed by the outcomes of an independent assessment over a reasonable period of time.”¹⁶ The assumption being that the lower IA figure is accurate. It should not be assumed that it is the case with a new and untested system of determining funding.

The IA will be used to create a global

Independent Assessments Submission #58

“My partner and I both have CFS. I can’t get health professionals to stop\ assuming he is able to provide care for me, when in fact I need to provide care \ to him. I can’t see any questions in the assessment process that account for the
more difficult household situations with multiple severely impacted people.”

~ Anonymous, NDIS participant with ME/CFS

A IA will not detect the difference in transport needs and therapist travel costs for participants who live in the same city, but vastly different distances from the CBD. It will
not observe the nuances of disability. It will also not determine what is necessary for the individual to achieve their particular goals as goals are not a part of the process.

The planning discussion paper refers to swapping supports around if someone wants to do something on a weekend. Will adequate funding for weekday support only be provided in\the global budget and participants will have to go without in order to get weekend or public holiday support? People with disabilities should be able to live every day of the week,\ just like our peers. As the NDIA has provided no modelling, or comparison of current vs intended funding, we have no way of knowing what they intend to fund as reasonable and\necessary under the new regime.

While not having to debate and justify every single support has some positives, we are sceptical that the IA will result in appropriate levels of funding. The assessments themselves\are fundamentally flawed and not capable of determining functional capacity.\ Add to that a formula to determine reasonable and necessary funding and we have no chance of a personalised budget. This hidden methodology of calculating funding doesn’t “enshrine transparency as a principle underpinning all their engagement with people with
disability.” as Tune recommended.¹⁷

It will also make it more difficult to appeal the plan. Participants will likely be made to establish that all spending of the global budget is on reasonable and necessary supports, in
to demonstrate there is insufficient funding for the specific support that is needed. Whereas currently only the individual support requested needs to be justified as reasonable \and necessary. Based on the information provided so far, there appears to be limited scope for the budget to be adjusted for the individual participant’s needs, which the IA is unlikely to fully measure.

The NDIA also does not tell us how a person with fluctuations in function will be funded to allow for adequate support in bad times and good times. If someone is assessed during a better 30 days for them, then funding for the next five years will be inadequate to support the bad times. Someone should not need to request and await a review,\which may need to

¹⁷ Tune, D (2019) Review of the National Disability Scheme Act 2013; Removing red tape and implementing the NDIS participant service guarantee.\ Available at https://www.dss.gov.au/sites/default/files/documents/01-2020/ndis-act-review-final-accessibility-and-prepared-publishing1.pdf [Accessed 23 March 2021]

Independent Assessments

Submission #386

The inclusion redacted a new IA every time their function fluctuates. For many with ME/CFS, functional changes occur frequently and they should not be forced to undergo IA frequently in order to get adequate funding.

For people with fluctuation in disability, such as many with ME/CFS, it is concerning that the plan may not adequately support these fluctuations. Of great concern is that the NDIA plans to only release allocated plan funding to participants on a monthly or quarterly basis^[18] rather than the current annual or two-year funding pool. The current funding availability provides the flexibility needed to support fluctuations in function, special events and crisis situations. This does not accord with the principle that the NDIA “recognise participants as experts in their own lives and maximises flexibility and participant control over their personalised plan budget.”^[19]

While certainty of ongoing funding and less frequent planning meetings (which are often stressful) is welcome, the proposed means of funding plans and determining reasonable and necessary supports is fundamentally flawed. There is a risk of great harm to individuals if treating therapist recommendations and the participants’ own identification of need are both ignored. As Tune stated: “> Planners need to appreciate that people with disability (and the people providing functional capacity assessments on their behalf) are experts in their disability”^[20] in line with the Guiding principles of the NDIS Act.

Instead, we propose that bottom up funding continue. The issues of inconsistency can be dealt with through the following:

a) Adequate training of planners. The Australian National Audit Office (ANAO) identified only 73 per cent of planners had completed the redactedreasonable and necessary training module and that for higher delegates who approve larger packages, only 20 per cent were deemed competent at the end of their seven-week course.^[21]

b) Planners reading all information before a planning meeting and being provided with sufficient time to do this.

c) Participants dealing direct with planners so they can establish an understanding of the person they are making decisions about and information is not “lost” in translation from LAC. The planner should be in an ongoing relationship with the

— References —

^[18]National Disability Insurance Scheme(2020). Consultation paper: Planning Policy for Personalised Budgets and Plan Flexibility. Available at https://www.ndis.gov.au/media/2875/download [Accessed 15 March 2021]

^[19]National Disability Insurance Scheme(2020). Consultation paper: Planning Policy for Personalised Budgets and Plan Flexibility. Available at https://www.ndis.gov.au/media/2875/download [Accessed 15 March 2021], p.10

^[20]Tune, D (2019) Review of the National Disability Scheme Act 2013; Removing red tape and implementing the NDIS participant service guarantee. Available at https://www.dss.gov.au/sites/default/files/documents/01-2020/ndis-act-review-final-accessibility-and-prepared- publishing1.pdf [Accessed 23 March 2021]

^[21]Auditor-General Report No. 14, 2020–2021, Decision-making Controls for NDIS Participant Plans, available at: https://www.anao.gov.au/work/performance-audit/decision-making-controls-ndis-participant-plans [ Acessed 23 March, 2020], p. 33–34.

Independent Assessments

Submission 332 \ME//CFS & the NDIS Group Submission: Inquiry into Independent Assessments under the NDIS

A participant and easily contactable throughout the plan, either by direct email or direct phone number. Currently, planners are only contactable via the NDIS enquires email or call centre. The enquiries email is not checked in a timely manner and it is common for an email to still not be ‘received’, several weeks after it was sent. And a response takes even longer.

e) Planners need to appreciate that people with disability (and the people providing functional capacity assessments on their behalf) are experts in their disability.

f) The NDIA provide guidance to allied health professionals on the information required in reports to ensure consistency. It is good to see that an outline for progress reports was finally added to the NDis website in February 2021.
²² g) Safeguards established that limit reducing a participant’s plan by more than 10 per cent without a second delegate reviewing all the evidence and discussing the reduction with the participant prior to a final decision being made.

In relation to funding of plans from one year to the next, it is not unusual to hear of plan funding being reduced by 30 to 50 per cent, without warning. This causes great distress to participants and carers. Additionally, those without capacity to appeal are forced to be underfunded for the duration of their plan. ANAO found 63 per cent of S100 reviews resulted in a varied plan and only 19 per cent were unchanged. Similarly, 65.3 per cent of Administrative Appeals Tribunal (AAT) cases were resolved by consent, indicating the agency needs to improve their initial decision making.\
²³ The NDIA and Minister claim there is inequitable funding based on where people live. While there is some truth to this, there are many obstacles to becoming a NDIS participant. The comment also did not take into consideration that many people with significant disability live near major cities in order to get the necessary disability and medical supports that they require.

Some of those who have received better funding include those who have the capacity and education and are better able to understand and use the system, as well as fight for their entitlements under the legislation. It does not help that the NDIA are adversarial, disadvantaging many. IA will not level the playing field. Participants and prospective participants who are best able to understand the NDis, are more likely to receive funding that meets their needs, compared to those who are unable to engage in the way the NDIA requires. This pertains to language used, self-advocacy, ability to prepare documents, understanding of legislation and the ability to fight if necessary.

Independent Assessments

Submission #362

4.6 the circumstances in which a person may not be required to complete an independent assessment;

The NDIA state “The delegate may decide that an applicant does not need to complete an independent assessment where there is a risk to safety or an assessment is deemed inaccessible or invalid.“

a) Risk and safety: where the process is likely to do more harm than benefit to the individual, and may pose a safety risk to the individual or the assessor (this may include where paranoia is present and severe, there are severe behaviours of concern, or specific trauma related concerns which can’t be alleviated). b) Assessment is inaccessible or invalid: where there may be concerns about the process producing valid information and other sources and/or forms of information are better suited (e.g., a support person can’t be identified to complete relevant components of the independent assessment).

The delegate’s decision not to grant an exception for an independent assessment will not be a reviewable decision.”^[24]

If the assessment will do harm to a participant’s mental or physical well-being, they should not be required to do one. For most people with ME/CFS the assessment will damage their physical health. IA should not be a mandatory requirement to gain access to ongoing disability support. For example, some people with ME/CFS cannot speak, some cannot safely speak for more than a few minutes, others have Multiple Chemical Sensitivity and cannot have people bringing chemicals such as shampoo and laundry detergent residue into their homes, and some cannot use screens to do telehealth due to visual sensitivity. The harm that may result could range from requiring a week in bed to recover, to permanent loss of functional capacity.

“The absolute maximum I would be able to manage to meet with an assessor would be 30 minutes, and that would include probably 2 weeks of recovery time for me during which I cancelled almost all other appointments and did pretty much nothing but rest. If they needed longer they would have to do another 30 minutes after 2 weeks was up. Clearly, having a long assessment would take months … I can’t even imagine how it would work. It’s certainly not compatible with living a reasonable life for me!”

A additional problem is that this wouldn’t show the assessor the consequences of the assessment itself - I recently had a very relaxed 25-minute phone call for an NDIS plan review, it was with a LAC who I feel safe with and have worked with for years so it was an optimal situation. The next day I was in agony and

^[24] National Disability Insurance Scheme (2021). Consultation paper: Access and Eligibility Policy with Independent Assessments. Available at https://www ndis.gov.au/media/2874/download [Accessed 15 March 2021], p. 21.

Independent Assessments

Submission #32

ME/CFS & the NDIS Group Submission: Inquiry into independent Assessments under the NDIS

was almost completely unable to speak, amongst many other symptoms. I literally couldn’t get a full sentence out … I wish I had thought to video it, only I couldn’t think at the time of course. I can’t imagine educated and articulate me in a meeting actually being believed when I try to explain phenomenon this to a stranger who doesn’t know me and has never encountered it.”

~Anonymous, NDIS participant with ME/CFS

For most people with ME/CFS, participating in the assessment will itself cause PEM before any questionnaires or observations are done, due to the stress of being assessed by a stranger.

“I feel concerned about the physical impact that an assessment will cause. Meeting with an assessor for as little as half an hour will cause me to crash and will impact my health for days after. (Not to mention the fact that emotional stress, such as that caused by assessments, causes me to crash). I am a carer for my two children with complex disabilities. How am I supposed to care for them effectively when my own health has been negatively impacted by the very people who are meant to be supporting me?”

~Anonymous, NDIS participant with ME/CFS

due to lack of understanding of ME/CFS by medical practitioners and allied health practitioners, many people with ME/CFS have suffered medical trauma. Being assessed by a stranger can cause distress and it is unreasonable that participants be subjected to these assessments, on a regular basis, for the rest of their lives. It is also unreasonable that people be made to discuss all their inabilities with a stranger, including extremely personal topics such as sexual function.

As it is uncommon for allied health professionals to understand ME/CFS, it is likely they will ask the person to complete tasks that they cannot safely do, or will cause PEM. The pressure to comply, or risk access being denied or funding withdrawn, could lead to harm to the person. Many practitioners lack the understanding of PEM that is required to safely assess somebody and it is unlikely that a randomly chosen assessor from a variety of health backgrounds, including speech pathology and psychology, would understand the risk to the participant and be able to assess them safely.

“I have experienced trauma due to being mistreated by government contracted individuals whilst going through processes to determine eligibility for supports (in addition, there were inaccuracies in their assessments).“

Submission 352

ME/CFS & the NDIS Group submission: Inquiry into independent Assessments under the NDIS

The following text was provided as part of this document:

On more than one occasion, health providers have come into my home and not acted professionally. All of this makes the idea of the proposed Independent Assessments very distressing for me.

At the moment, I am able to choose which allied health providers come into my home and make sure that they are knowledgeable and professional and I have been able to build up trust in them. To be forced to have a stranger come in to my home, the place where I live the majority of my life and the place which is my safe space, is very upsetting.

With the proposed Independent Assessments, the power dynamic is in favour of the assessor, and not of the disabled person, as such an assessment will be compulsory in terms of accessing supports. This means that it would be even more difficult for me to ask the assessor to suspend an assessment if I am too unwell to continue, to break up the assessment into manageable segments, or to decline if I am asked to carry out a task which I cannot do safely.

This is compounded by the possibility that the assessor may be from an area of expertise which is not relevant to my disability and that their knowledge of my disability may be extremely limited. As disabled person, I am more vulnerable and these proposed Independent Assessments have the very real potential of causing further harm.”

~Anonymous, NDIS participant with ME/CFS

As has already been discussed, IA will be invalid for a number of reasons. It would be grossly negligent to put someone who would be harmed by the process through an invalid assessment.

The NDIA wants to make Exemption decisions non-reviewable. This means there is nothing to safeguard the prospective participant/participant from a poor decision by the NDIA planner. Given that NDIS planners frequently make bad decisions, which are quickly overturned on review, it is poor administration and a lack of procedural fairness to disallow decisions on exemptions to be Reviewable Decisions.

Failure to have an Independent Assessment will be deemed withdrawal of an access request so those most in need of support will be denied access because their disability prevents them from jumping through the required hoops.

Many people with ME/CFS who have not received NDIS access are unable to access support services and, due to their isolation and lack of understanding of their disability, may also lack support from family, friends or professionals. Without someone to support them and assist them with their application, they will be unable to access the NDIS.

opportunities to review or challenge the outcomes of independent assessments;

The NDIA plans to provide very limited circumstances in which a secondary IA can be requested. These are limited to instances where the assessment was not consistent with the independent assessment framework, or if the applicant has had a significant change to their functional capacity or circumstances. The NDIA provides no mechanism by which an individual can appeal an independent assessment result that they believe is inaccurate and will only allow appeals of the access and planning decisions that are made using the IA results.

As outlined in this submission, there are numerous reasons why an IA may not be an accurate assessment of a participant’s, or prospective participant’s, function and support needs.

By not providing a single mechanism to appeal an inaccurate IA a person may have to then appeal multiple decisions based on the one inaccurate IA.

For example:

a) An IA could be used to determine plan funding; the person then appeals the decision as the IA is inaccurate. The person is without adequate support until the review(s) are completed. This could be months for an internal review and years for an external AAT review. b) The same IA is then used to determine whether an expensive piece of Assistive Technology should be funded. The IA indicates little or no impairment in this area but this is inaccurate. As a consequence the Assistive Technology is not funded. The participant must then appeal that decision. c) The same IA is then used as the basis for the decision to revoke access. Again, the participant must fight the decision because the IA was inaccurate.

So the participant has multiple internal and possibly AAT reviews to deal with instead of one IA review that can correct, or replace, the inaccurate assessment.

The NDIA will also greatly add to the already high administrative burden for participants. They will also have multiple internal reviews and possibly AAT cases to handle rather than one. There will also be greater demand on NDIS-funded supports such as Support Coordinators who assist participants to navigate the review process.

“The lack of ability to challenge the IA is at odds with due process and natural justice. A copy of any assessment should be provided as a matter of course. No assessment that fundamentally determines another person’s quality of life should ever be unable to be reviewed and/or corrected.”

Independent Assessments

Submission #332

~ Anonymous, NDIS participant with ME/CFS

to ensure transparency and the ability to appeal an inaccurate IA, the full results should be provided to participants/prospective participants on request. The NDIA has proposed to only provide a summary document. This is unacceptable.

Where an IA is contested the most appropriate process would be to provide funding for a person’s own practitioner/s to do a full functional assessment.

If there is a significant difference to the IA, the IA should be considered invalid. To deny this is unfair and leaves people at risk from incompetent assessors and invalid, unreliable assessments. Simply repeating the IA with another NDIA-contracted assessor is not appropriate as it is likely the assessment itself that resulted in the invalid result.

If a person cannot appeal an IA result they must be afforded the opportunity to put their case in an appeal of a reviewable decision, with reports from treating practitioners fully funded and legal services also provided free of charge to participants/prospective participants by the NDIA. There must remain provision for external review by AAT.

Currentlly, the NDIA engages their own legal representation at AAT, but for participants or prospective participants it is often difficult to get legal aid support and they must go to the AAT without legal representation. Bearing in mind that these are people with disabilities, it is imperative that the playing field be levelled.

4.8 the appropriateness of independent assessments for people with particular disability types, including psychosocial disability;

Independent assessments are not appropriate for people living with ME/CFS. They do not adequately assess and record the:

variability of ME/CFS symptoms
ability to sustain physical and mental performance for more than a short period of time
fatigue and pain resulting from the assessment process and as a part of undertaking the routine daily activities of living.

ME/CFS results in significant impairment in those who experience it, especially with Severe and Very Severe ME/CFS.

A recent study found that people with ME/CFS have a poorer quality of life than people with other serious, disabling conditions such as diabetes, cancer, angina, heart attack, rheumatoid arthritis or lung disease.
Dr Elizabeth Unger (Chief of the Chronic Viral Diseases Branch of the Centers for Disease Control (CDC)) presented data from the CDC’s

25 Falk Hvidberg, Michael, Louise Schouborg Brinth, Anne V. Olesen, Karin D. Petersen, and Lars Ehlers. “The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).” PloS One 10, no. 7 (2015): e0132421. https://doi.org/10.1371/journal.pone.0132421.

Independent Assessments

Submission #332

multisite study of ME/CFS²⁶ indicating that people with ME/CFS have lower overall functioning compared to healthy controls (the exceptions being mental health and emotional functioning), which were within normal limits:

The text describes a figure labeled “Figure 1(Source: Dr Unger’s presentation, CDC Grand Rounds, Feb 2016).”

The Disability-Adjusted Live Year (DALY) Weights for Chronic Fatigue Syndrome (Estimated using EQ-5D+ regression model)²⁷ are:

Mild handicap 0.137
Moderate handicap 0.449
Severe or profound handicap 0.760

in comparison, the DALY weights for MS are:

Relapsing-remitting phase 0.330
Progressive phase 0.670
Progressive from onset 0.670

We are concerned that the IA proposed by the NDIA will not adequately capture the serious functional impairments associated with ME/CFS, and as a result people with severe, debilitating and disabling impairments will not receive the support they need.

in the NDIA discussion paper on IA, the question “How should we make the distinction between disability and chronic, acute or palliative health conditions clearer?” was asked.

²⁶ Unger ER, Lin JS, Brimmer DJ, et al. CDC Grand Rounds: Chronic Fatigue Syndrome — Advancing Research and Clinical Education. MMWR Morb Mortal Wkly Rep 2016;65:1434–1438. DOI: http://dx.doi.org/10.15585/mmwr.mm655051a4 ²⁷ Mathers, Colin, Vos, Theo and Stevenson, Chris 1999, The burden of disease and injury in Australia, Australian Institute of Health and Welfare, Canberra, A. C. T. pp. 197, 201, hhttp://dro.deakin.edu.au/eserv/DU:30046704/stevenson-burdenofdisease-1999.pdf

Independent Assessments

Submission #362

The current Act does not discriminate based on the cause of the impairment. Neither should the NDIA. The NDIA frequently use the catch all “it’s medical” as an excuse to deny funding for many supports, even when it is clearly a functional issue and supports should be funded under the NDis. If it causes functional impairment, it is not solely medical; it is also disability.

ME/CFS, MS and Rheumatoid Arthritis all cause functional disability and should be treated the same as other disabilities. To treat them differently is discrimination.

The NDIA have indicated they intend to provide guidance on what constitutes a permanent disability and provide direction on issues relating to the impacts of chronic, acute and terminal health conditions on functional capacity. The latest quarterly report refers to the NDIS “facing a number of pressures around Scheme entry and funding decisions.” Many of these are related to mainstream interfaces, and include intersection between chronic health conditions and developmental delay with the health system, and affordable housing with the social housing systems. These pressures require continued management responses so that the Scheme does not become a “funder of first or last resort,” especially where other systems are intended or better suited to provide the required supports.”²⁸

It is imperative that the legislation is not changed to exclude people with chronic health conditions that cause disability. The Ndis is the most appropriate funding stream for supports that mitigate the impact of functional impairments on quality of life and, in many cases, basic survival. To discriminate against people based on the cause of their impairment, in the name of scheme sustainability, would be a travesty and result in significant harm to many. The health system is designed to treat specific conditions; it does not provide support with personal care, daily household tasks, equipment, therapy to manage the impact of disability or assistance to participate in social and community activities.

Anothe area of concern raised in the access discussion paper is that the NDIA intends to request and record information about a participant’s full range of disabilities and health conditions for research and analytical purposes. As the recording of additional disabilities and health conditions will not, according to the Ndia, impact access and plan funding decisions it is not necessary to collect such information. To do so is a breach of privacy and overreach of the scheme and arguably a breach of Article 22 of the UN convention on rights of people with disability.

note: [^28]: NDIS (2020) NDis Quarterly Report to Disability Ministers, 31 December 2020 Available at https://www.ndis.gov.au/media/2940/download [Accessed 23 March 2021], p.77

Appendix

5.1 Eligibility Reassessments Checklist

Age: 7+ years. Access Status: A disability

DOCUMENT 20

Checklist

A participant’s name: Staff member completing checklist: Date completed:

1. Is there evidence the person no longer resides in Australia? As per Operational Guidelines ~ Access and the NDIS ~ The residence requirements — 7.1 Resides in Australia. Yes, Refer to National Access for Reassessment -Revocation lf yes, do not complete remainder of checklist No, go to question 2

2. Is there evidence the person does not meet the Residence requirements? A person must live in Australia and be: e an Australian Citizen; OR e a holder of a permanent visa; OR e aholder of a special category visa (SCV). The exception to this is a person who met the criteria outlined in the NSW Prescribed Program Rules. Yes, Refer to National Access for Reassessme nt – Revocation lf yes, do not complete remaind erof checklist No, go to question 3

3. Is the primary disability in the system correct? This should be the permanent disability that has the biggest impact on the person’s daily life. Yes, goto question 4 No, follow process to update the primary disability in the Business System, then go to question 4

Independent Assessments

Submission 332

FO! 20/21-0099

Basic Information Details Yes/No

4. Is there evidence the person has a disability on List A?

Yes, Do not send for Eligibility Reassessment.

Disabilities on List A are likely to meet the disability requirements

e Disability must meet the specific requirements detailed on List A, alternatively select ‘no’ and continue with the checklist.
e If yes, do not complete remainder of checklist
e Eg. If a participant has a disability of Autism Spectrum Disorder and `redacted: s47F - Personal privacy` does not indicate a level of 2 or 3, select 'No' and continue with checklist e Eg. If a participant has a disability of Intellectual Disability and evidence does not indicate a level of Moderate, Severe or Profound, select ‘No’ and continue with checklist

5. Is the primary disability a health condition?
Yes, Refer to National Access for Reassessme nt— Revocation If yes, do not complete remainder of checkiist No, go to question 6

A chronic health condition (e.g., Cancer, Osteoarthritis), Chronic Pain; A high prevalence health condition (e.g., Asthma, Eczema).

6. Is the person 26 years old or above with a disability Yes, Refer to National Access for Reassessment —Revocation.

of hearing loss less than 65 decibels (pure tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) in the better ear?
As per Operational Guidelines –Access and the NDIS–The disability requirements –9.3.3 Additional guidance for hearing impairments.
if no,do not complete reminder of checklist
No, go to question 7

Page 150 of 157

Independent Assessments

Submission 332

FOI 20/21-0099

The following information relates to page 151 of document submission.

Disability - Permanency

Section 24(1)(b), NDIS Act 2013

An impairment is, or is likely to be, permanent only if there are no known, available and appropriate evidence based treatments that would be likely to remedy (i.e. cure or substantially relieve) the impairment.

If there is a potential treatment which may reduce, or eliminate, disability related functional impacts this must be explored before the impacts are considered permanent.

| Question | Details | |egin{itemize}

Is there evidence the person has a disability on List B?

Disabilities on List B are considered permanent.

No, go to question 8
| You can refer back for further assessment.| Yes, goto question 8
No, go to question 8

Eg. Surgery, rehabilitation, medication.

o Conditions such as Fibromyalgia, Chronic Fatigue Syndrome, Chronic Pain, Depression, Anxiety, PTSD, Obesity, Osteoarthritis would be unlikely to meet this criteria.

Yes, Refer to National Access for Reassessme nt— Revocation f yes, do not complete remainder of checklist \ No, go to question 9

Disability — Substantially reduced functional capacity

Section 24(1)(c) NDIS Act 2013

e Consider if the person is unable to complete a variety of everyday activities effectively or completely. (Do not solely consider what R&N supports could be approved)

e Undertaking a task more slowly or differently to others will not necessarily mean a person cannot participate effectively or completely in an activity.

e For fluctuating or episodic disabilities, the impact will be considered in the periods between acute episodes.

e The person must experience substantially reduced functional capacity in at least one of the key life

Independent Assessments

Submission 332

FOI 20/21-0099

The following relates to:

Disability — Substantially reduced functional capacity domains due to their permanent disability. e The functional impact must relate to a disability that is considered permanent e For children, consider whether a need for assistance is consistent with normal expectations of a person of a similar age

Mobility Activities

Moving around home and community to undertake activities of daily living requiring the use of limbs.

Question
9. Is the person able to mobilise without using disability specific aids/equipment?
No, go to question 10

e This includes assistive technology, home modifications or disability specific equipment (other than commonly used items). o By itself, reliance on commonly used items (such as glasses, walking sticks, non-slip bath mats, etc.) will not result in a substantially reduced functional capacity. 10. Do these mobility impacts relate to the person’s permanent disability? Yes, goto question 27 No, go to question 11

Self-Care Activities

Personal care, hygiene, grooming, feeding oneself, ability to care for own health care needs.

Question
11. Is the person usually able to complete self-care tasks without using disability specific aids/equipment?
No, go to question 13

e Assistive technology, home modifications or disability specific equipment (other than commonly used items). o Byitself, reliance on commonly used items (such as glasses, walking sticks, non-slip bath mats, simple adapted kitchen utensils and dressing aids etc.) will not result in substantially reduced functional capacity. c By itselt, assistance with domestic activities would not

Independent Assessments

Submission 332

FOI 20/21-0099

Disability — Substantially reduced functional capacity Details

12. Is the person able to complete self-care tasks without support from another person? Yes, goto question 14 No, goto question 13 e Consider if the person is unable to complete this task without assistance from another person; OR e Consider if the person requires significant intervention to complete self-care tasks. o e.g. Does not wash or change clothing without significant intervention. The following would not be considered substantial: e Needs periodic assistance to check compliance with medications; ORe Shows limited interest in self-care and sometimes fails to wash and change clothes regularly.

13. Do these self-care functional impacts relate to the person’s permanent disability? Yes, goto question 27 No, goto question 14

Making and keeping friends, interacting with the community, behaving within limits, coping with feelings and emotions in a social context.

14. Is the person able to access the community independently without the support of another person? Yes, goto question 15 Consider not only what a person cannot do but also what they can do, even if with limitations. No, goto question 16 The following would be unlikely to be considered substantial:

occasional assistance required to access community activities

15. Is the person able to complete social interaction tasks without using disability specific aids/equipment? Yes, goto question 17 e This includes assistive technology, home modifications No, go or disability specific equipment (other than commonly

Independent Assessments

Submission #386

FOI 20/21-0099

Yes, go to question 27
No, go to question 17

Self-Management activities (Note: Does not refer to self- management of plan)

The cognitive capacity to organise one’s life, plan and make decisions, take responsibility for oneself (includes completing daily tasks, making decisions, problem solving, and managing finances).

17. Is the person 18 years of age or above with a:

* formal guardianship order in place;

or * family member/friend making major life/financial decisions? → Question 18.

18. Is the person able to complete self-management tasks without using disability specific aids/equipment?

→ Question 19. This includes assistive technology, home modifications or disability specific equipment (other than commonly used items). No, go to question 20. e By itself, reliance on commonly used items (such as notetaking device, phones, tablets will not result in substantially reduced functional capacity.

19. Is the person able to complete self-management tasks without support from another person?

→ Question 21. The following would be unlikely to be considered substantial: e Prone to poor financial decisions (has been known on occasion to spend entire weekly income); OR e Lack of motivation to clean the house.

20. Do these self- management functional impacts relate to the person’s permanent disability?

Yes, go to question 27 No, go to question 21

Independent Assessments

Submission 332

FOI 20/21-0099

The following questions assess aspects of functional capacity.

Disability — Substantially reduced functional capacity

Communication activities

Being understood (spoken, written or sign language), understanding others, expressing needs and wants.

| Question | Text | | :—–– | | 21. | Is the person able to communicate without using disability specific aids/equipment? * This includes assistive technology or disability-specific equipment (other than commonly used items). | | Yes, go to question 22 No, go to question 23 | | 22. | Is the person able to complete communication tasks without support from another person?
* Consider if the person is unable to communicate without assistance from another person.| |Yes, goto question 24
No, go to question 23 | | 23. | Do these communication functional impacts relate to the person’s permanent disability?
| Yes, goto question 27
No, go to question 24 |

Learning activities

Understanding and remembering information, learning new things, practicing and using new skills.

Question	Text
24.	Is the person able to complete learning tasks without using disability specific aids/equipment? *This includes assistive technology, home modifications or disability specific equipment (other than commonly used items).


25.	Is the person able to complete learning tasks without support from another person? *Not related to educational supports; relates to capacity to learn or ‘re-learn’ every day task.

Independent Assessments

Submission 332

FOI 20/21-0099

The page details questions regarding functional capacity assessment within an independent assessments submission.

Disability – Substantially reduced functional capability

e.g. Ability to learn a new bus route to get from home to work without assistance, ability to learn simple tasks such as how make a sandwich or a very basic meal.

Details: Revocation (If yes, do not complete remainder of checklist) Yes/No:

Question 26: Do the learning functional impacts relate to the person’s permanent disability?

Yes, go to question 27
No, Refer to National Access for Reassessment - Revocation

If no, do not complete remainder of checklist

Disability – Requirement for lifetime support under the NDIS

Section 24(1)(e) NDIS Act 2013

Question 27: Is the person likely to require support under the NDIS for the person’s lifetime?:

Yes, Do not send for Eligibility Reassessme nt * No, Refer to National Access for Reassessme nt —Revocation

Supporting Material

NDIS Act 2013
NDIS Becoming a Participant Rule 2016
Staff Manual—Access and the NDIS

Page 156 of 157

Independent Assessments

Submission 332

FOI 20/21-0099 e SOP – Refer Participant for Eligibility Reassessment

6. Process Owner & Approver

Branch Manager - National Access and Workload Management Team

7. Feedback

If you have any feedback about this Standard Operating Procedure, please email [National](mailto:Access Branch). In your email, remember to include the title of the product you are referring to and describe your suggestion or issue concisely.

8. Version Control

Awaiting Table Conversion:

Version	Amended By	Brief Description of Change	Status	Date
v1.0	TSO036	Initial version approved to meet needs of ER Pilot process- Class 2 Approval	APPROVED	2019-03-19
v1.1	AMO0051	Changes to table to meet accessibility requirements — no content change	DRAFT	2020-03-25
v1.2	JMO0122	Stakeholder feedback incorporated	DRAFT	2020-03-25
v2.0	TS0036	Class 2 Approval	APPROVED	2020-03-25
v2.1	MG0023	Changes to table to meet accessibility requirements – no content change	DRAFT	2020-04-01
v3.0	BLOO12	Class 1 Approval	APPROVED	2020-04-02

Page 157 of 157

ME/CFS experiences within the National Disability Insurance Scheme

ME/CFS and the NDIS Group Submission

31 march 2021

Contributors

CONTENTS

Introduction

Independent Assessments

3 What is ME/CFS

Symptom Severity and Impact

Mild (meet criteria, significantly reduced activity level),

Response to terms of Inquiry

4.1 The impact of similar policies in other jurisdictions and in the provision of other government services;

4.2 The independence, qualifications, training, expertise and quality assurance of assessors;

Page 10

4.3 the appropriateness of the assessment tools selected for use in independent

Assessments

Page 14

Page 15

4.4 the implications of independent assessments for access to and eligibility for the NDIS;

4.4.1 Independent Assessment

Page 19

Eligibility Reassessment

Page 22

Independent Assessments Submission #354

Independent Assessments

4.5 The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;

Independent Assessments

Independent Assessments Submission #58

Independent Assessments

Independent Assessments

Independent Assessments

4.6 the circumstances in which a person may not be required to complete an independent assessment;

Independent Assessments

Submission 352

opportunities to review or challenge the outcomes of independent assessments;

Independent Assessments

4.8 the appropriateness of independent assessments for people with particular disability types, including psychosocial disability;

Independent Assessments

4.9 any other related matters

Independent Assessments

Appendix

5.1 Eligibility Reassessments Checklist

DOCUMENT 20

Checklist

Independent Assessments

Basic Information Details Yes/No

4. Is there evidence the person has a disability on List A?

5. Is the primary disability a health condition?Yes, Refer to National Access for Reassessme nt— Revocation If yes, do not complete remainder of checkiist No, go to question 6

6. Is the person 26 years old or above with a disability Yes, Refer to National Access for Reassessment —Revocation.

Independent Assessments

Disability - Permanency

Are there any clinical, medical or other treatments that would likely reduce, or eliminate, disability related functional impact?

Disability — Substantially reduced functional capacity

Independent Assessments

Mobility Activities

Self-Care Activities

Independent Assessments

Disability — Substantially reduced functional capacity Details

Social Interaction activities

Independent Assessments

16. Do these social interaction functional impacts relate to the person’s permanent disability?

Self-Management activities (Note: Does not refer to self- management of plan)

17. Is the person 18 years of age or above with a:

18. Is the person able to complete self-management tasks without using disability specific aids/equipment?

19. Is the person able to complete self-management tasks without support from another person?

20. Do these self- management functional impacts relate to the person’s permanent disability?

Independent Assessments

Disability — Substantially reduced functional capacity

Communication activities

Learning activities

Independent Assessments

Disability – Substantially reduced functional capability

Question 26: Do the learning functional impacts relate to the person’s permanent disability?

Disability – Requirement for lifetime support under the NDIS

Question 27: Is the person likely to require support under the NDIS for the person’s lifetime?:

Supporting Material

Independent Assessments

6. Process Owner & Approver

7. Feedback

8. Version Control

5. Is the primary disability a health condition?
Yes, Refer to National Access for Reassessme nt— Revocation If yes, do not complete remainder of checkiist No, go to question 6