NDIA Accountability Project

Recommendations for improving NDIS plans for deafblind participants

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Parliamentary Inquiry into

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  ;[~:~~~] DEAFBLIND
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March 2021

This document was prepared by:

Karen Wickham

Contributions and feedback on early drafts was provided by:

  • Sinead Tyrrell, Able Australia
  • David Murray and Ben McAtamney, Deafblind Australia
  • Karen Wickham, Senses Australia
  • Emily Shepard, Usher Kids Australia
  • Rebecca Dunkley, Guide Dogs NSW
  • Trisha Borg, Narbethong State Special School
  • Madelene Rich, CHARGE syndrome Australasia
  • Janne Bidenko, Deafblind Association, NSW
  • Frances Gentle, South Pacific Educators of the Vision Impired

Additional feedback and lived experiences contributed by

Deafblind West Australians

Board/Committee members

  • Allan Cox
  • Kirsty Lim
  • Eddie Szczepanik
  • Melissa Evans
With special thanks to

Able Australia et al. who shared their submission to the inquiry, much of which is relevant to Deafblind West Australians, and has been incorporated, with permission, into this submission.

Contents

SUMMARY OF RECOMMENDATIONS

  • Recommendation 1.
  • Recommendation 2
  • Recommendation 3
  • Recommendation 4.
  • Recommendation 5.
  • Recommendation 6.
  • Recommendation 7.
  • Recommendation 8.

EXECUTIVE SUMMARY

ACKNOWLEDGEMENTS

BACKGROUND

Introduction

Introduction to deafblindness

Causes of deafblindness and prevalence

RESPONSE TO TERMS OF REFERENCE

REFERENCES

SUMMARY OF RECOMMENDATIONS

Recommendation 1

That further consultation is undertaken specifically with the Australian deafblind community so the NDIA has a better understanding of key issues and put measures in place to ensure people with deafblindness are not disadvantaged by independent assessments, and that these assessments are accessible, inclusive of and meaningful to people with deafblindness.

Note: this is consistent with recommendation 4 from Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021, see attached).

Recommendation 2

That if a person is identified as having combined vision and hearing disabilities, they do NOT have to identify a primary disability as blindness or deafness, but can identify their primary disability as being deafblindness for the purpose of independent assessments.

Note: this recommendation is consistent with recommendation 1 of Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

Recommendation 3

That if a person is identified as having combined vision and hearing disabilities, that an Independent Assessor must have a minimum of 3 years’ experience in the disability sector and undertake mandatory deafblind awareness training developed specifically for independent assessors. This training is also to be developed for LAC’s and NDIA Planners as per recommendation 2 see note.

Note: this recommendation is consistent with recommendation 2 of Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

Recommendation 4

That if an Auslan interpreter is required for the Independent Assessment that an interpreter familiar with the person with deafblindness is booked, and as a minimum that an Auslan interpreter with experience working with people with deafblindness is booked.

  • Deafblind participants should always be given the option for their preferred interpreter to

facilitate good communication, full access and inclusion

Note: this recommendation is consistent with recommendation 3 of Consultation –

Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

Recommendation 5

That people with deafblindness are supported to bring a familiar person with them to their independent assessment to provide additional required communications support to minimise communication breakdown. This can be an Allied Health Professional, Communication Guide, Family, Carer or friend, a person who is very familiar with the support and communication needs of the person living with deafblindness

Recommendation 6

If a person is identified as having combined vision and hearing disability (deafblindness) independent assessments MUST occur face to face. Additional time must be allocated to accommodate complex communication needs

Recommendation 7

That people identified as having combined vision and hearing disabilities (deafblindness) are able to request exemption from participating in Independent Assessments, unless appropriate supports familiar with their support and communication needs are available. Undertaking by NDIA to provide an alternative, qualitative assessment that is valid with individuals who have a combined vision and hearing disability.

Recommendation 8

If people with deafblindness are participating in Independent Assessments that communication regradining the assessment is provide in accessible formats, accessible to the unique and complex needs of a person living with deafblindness

EXECUTIVE SUMMARY

People with deafblindness remain some of the most marginalised in Australia, with their

complex needs being poorly understood and inadequately addressed. While it is

understood that the National Disability Insurance Agency’s introduction of independent

assessments is to increase equity of provision of services and supports to Australians

with disabilities, unless systemic changes are made to delivery of the independent

assessments, it is likely the needs of people with deafblindness will not only not be fully

addressed, but in some instances current services may diminish.

People with deafblindness require some specific supports to meet even basic daily needs which differ considerably from other disability groups. These supports include use of Auslan interpreters with an understanding of the communication needs of people with deafblindness, including tactile sign language, use of communication guides trained specifically to work with people with deafblindness, with skill sets aligned to the unique communication and support needs of people living with deafblindness. In addition, the complexity of their needs overlapping both the separate sensory components requires the specialist services of Deafblind Consultants and/or experienced allied health workers with expertise in this specialist area. Without these supports people with deafblindness often cannot access medical and therapy services, education and employment settings, community services, information and community facilities, and these same barriers will be faced when trying to access independent assessments. The recruiting criteria for Independent Assessors requires only 1 post-graduate year, with no specialised experience. This will fail to meet and understand the unique and complex support needs of people who are deafblind.

The current disability workforce is poorly equipped to meet the needs of people with deafblindness. Even if funding is available, there are inadequate numbers of qualified experienced and trained staff with the required skill sets to meet the demands. Workforce development needs to be addressed by the National Disability Insurance Agency if the needs of people with deafblindness are to be addressed effectively.

Access to information and services remains problematic for people with deafblindness

due to issues accessing standard phone contact, NDS portal, print and audiovisual media. These barriers to accessing information go both ways, as it is currently extremely hard for people with deafblindness to have their needs and perspectives understood by service providers and government agencies due to the complexity of their communication needs.

All of these issues directly impact on the NDIA’s independent assessment processes.

Issues are experienced by Australians with deafblindness in accessing information about independent assessments, having NDIS staff and other independent staff understand their needs, and participating fully in all NDIS processes.

ACKNOWLEDGMENTS

This document was prepared by: Karen Wickham

Contributions and feedback on early drafts was provided by:

e. Sinead Tyrrell, Able Australia

e. David Murray and Ben McAtamney, Deafblind Australia

e. Karen Wickham, Senses Australia

e. Emily Shepard, Usher Kids Australia

e. Rebecca Dunkley, Guide Dogs NSW

e. Trisha Borg, Narbethong State Special School

e. Madelene Rich, CHARGE syndrome Australasia

e. Janne Bidenko, Deafblind Association, NSW

e. Frances Gentle, South Pacific Educators of the Vision Impaired

Final review, feedback and lived experiences contributed by Deafblind West Australians

Board/Committee members

Allan Cox Kirsty Lim Eddie Szczepanik Melissa Evans

With special thanks to Able Australia et al. who shared their submission to the inquiry, much of which is relevant to Deafblind West Australians, and has been incorporated, with permission, into this submission.

BACKGROUND

Introduction

This is a submission to the parliamentary inquiry into Independent Assessments from

deafblind West Australians. Deafblind West Australians is a peer support group for

people living with deafblindness in Western Australia. Established in 2007, the mission

of Deafblind West Australian’s peer support group is to ensure that those who are

debfblind in WA have meaningful, connected, inclusive and fulfilling lives.

The Objectives provide for four main areas of activity these include: peer support social activities, support to engage fully in the community, ready access to relevant education and information concerning matters that directly relate to specific needs, health and disability conditions and we provide advocacy and deafblind awareness training to the broader community. Currently DBWA has a sitting Board (7 deafblind members) approximately 60 State members, 20 Interstate members and 40 volunteers

Introduction to deafblindness (provided by Dr Meredith Prain)

Throughout this submission, the terms deafblind, combined vision and hearing impairment and dual sensory impairment will be used interchangeably as all three are used to describe people with deafblindness. Deafblindness is described by Deafblind Australia as:

   "a unique and isolating sensory disability resulting from the combination of both a

hearing and vision loss or impairment which significantly affects communication, socialisation mobility and daily living“

  People with deafblindness form a very diverse group due to the varying degrees
   of their vision and hearing impairments plus possible additional disabilities. This
  leads to a wide range of communication methods including speech, oral/aural
  communication, various forms of sign language including tactile, Deafblind
   fingerspelling, alternative and augmentative communication and print / braille"

  "Representing between 0.2% to 2% of the population, persons with

deafblindness are a very diverse yet hidden group and are, overall, more likely to be poor and unemployed, and with lower educational outcomes. Because

Causes of Deafblindness and Prevalence

The below background information is given regarding prevalence and causes of deafblindness to support recommendations made throughout this submission. While exact prevalence of deafblindness is not known, it was estimated that in 2013, there were 13,700 Australian’s with deafblindness under 60 years old (Dyke, 2013).

There are a number of syndromes and other causes which result in hearing impairment combined with vision impairment (deafblindness). Usher syndrome results in the combination of a hearing impairment and retinitis pigmentosa (a vision condition calling tunnel vision and night blindness). There are multiple types of Usher syndrome and those born with Usher syndrome type 1 have associated balance problems. Kimberling et al (2010) found 11% of all children diagnosed with a hearing impairment carried a gene for Usher syndrome and estimate the prevalence may be as high as one in 6,000. All individuals with Usher syndrome will fulfill the criteria for acceptance into the National Disability Insurance Scheme given they are born with a hearing impairment and have a progressive vision condition which will significantly impact on their functioning well before the age of 65 years.

CHARGE Association also results in combined vision and hearing impairment. The true incidence of CHARGE syndrome is not known, with estimates ranging from 0.1 to 1.2 in 10,000. The highest incidence of CHARGE syndrome in Canada was estimated at 1 in 8,500 in provinces with a research interest in CHARGE syndrome, so the true incidence of CHARGE syndrome reported internationally may therefore be underestimated. (Blake and Prasad, 2006)

Research has shown that prevalence of deafblindness in adults with an intellectual disability is 5% which is considerably higher than the rest of the population (Meuwese-Jongejeugd et al., 2008). It is important to note this figure does not include

  • children so the number will be higher across the whole population of individuals with a

  • developmenta or intellectual disability who are eligible to participate in the National

  • Disability Insurance Scheme. The prevalence of hearing impairment is at least 40 times

  • higher in people with intellectual disability compared with the general population (Carvill,

  • 2001). However, vision and hearing impairments are frequently inadequately diagnosed

  • and poorly addressed in people with intellectual disabilities (Kiani and Miller, 2010).

  • The prevalence of deaf-blindness is about 1 in 10000 school-age children in the UK

  • (Kiani and Miller, 2010).

  • Norrie disease is an inherited eye disorder resulting in blindness in male infants at birth

  • or soon after birth. Additional symptoms occur in some cases, however this varies from

  • case to case. Most individuals with Norrie disease develop sensorineural hearing loss

  • and many exhibit cognitive abnormalities such as developmental delay, and behavioral

  • issues including psychotic-like behaviours. Treatment focuses on the specific

  • symptoms present in each individual. The coordinated efforts of a team of specialists,

  • including pediatricians, ophthalmologists, and audiologists are typically needed. Early

  • intervention and special education services are important to ensure that children with

  • Norrie disease reach their full potential. (National Centre for Advancing Translational

  • Sciences, 2016)

RESPONSE TO TERMS OF REFERENCE

a) the development, modelling, reasons and justifications for the introduction of

  independent assessments into the NDIS;

The rationale underpinning the introduction of Independent Assessments, to address

the current inconsistencies, and improve equity of the NDIS is sound. However, the

modelling and development are lacking.

Deafblind West Australians, Able Australia, Deafblind Australia (peak body) and Senses

Australia are only aware of a small number (less than 5) Australians with deafblindness

who have taken part in the Independent Assessment trials. A Western Australian

participant stated that the assessment was “out of reach” for him due to these

accessibility issues. Those who have been a part of the trail, participants have only

been able to do so with considerable advocacy to advise what the process was about

and support their participation. While calls for volunteers were made, the lack of uptake

of people with deafblindness and their support networks highlights one of the key issues

for this group. Due to the inherent complexities of communication support needs, their

engagement is challenging for those without significant skills and experience with this

population. Generic disability service provision, including assessment, and even single

currently been put in place to address the need for understanding the complexities of working with people with deafblindness for independent assessors.

Of those people with deafblindness who took part in the Independent Assessments, reports have been that:

 -  The language used by the assessor, and in the assessments was too abstract
  and complex
 -  The assessors requested that the person with deafblindness complete two
  separate assessments, one for hearing and one for vision, completely

overlooking and not understanding that it is the interaction of the two disabilities

  which creates the one complex disability of deafblindness and that it is

  misleading and does not adequately address the complexity of the disability if the

  two sensory disabilities are viewed as separate and discrete.

The assessment tools used were not appropriate or aligned with the unique communication and support needs of people who are deafblind, many questions just did not translate, failed to gather relevant data and only served to confuse and frustrate the participant and assessor alike.

Support - Recommendation 1

That further consultation is undertaken specifically with the Australian deafblind community so the NDIA has a better understanding of key issues and put measures in place to ensure people with deafblindness are not disadvantaged by independent assessments, and that these assessments are accessible, inclusive of and meaningful to people with deafblindness.

Note: this is consistent with recommendation 4 from Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

Lived Experiences:

Example 1:

NDIS participant with dual sensory loss RW (Bridgetown): Current NDIS plan was prepared by LAC who allocated “vision impairment” as the disability. Basic funding allocated to Guide Dog, AT and functional assessment. This client has moderate to severe hearing loss in one ear and recently received a cochlear implant. No funding was allocated to support this client to receive specialised speech support for the implant as the disability is listed as “vision impairment”. The outcome of a successful transition to interpreting sound through the cochlear is extremely poor without this speech input and the financial and emotional burden of such a procedure has been borne by the client. Additional, the traditional AT devices (mainly speech output) that would be

Example Cases

Example 2:

NDIS participant with dual sensory loss KL (Perth) –

a) During COVID was contacted by NDIS to have a planning meeting via the telephone (this participant is Deaf). They refused to consider face to face or teleconference.

b) Planning Meeting. The LAC for the planning meeting had no experience or knowledge of deafblind. An interpreter booked by NDIS also had no experience of deafblind and was unable to deliver quality information to the client who also has Retinitis Pigmentosa. This meeting did not go ahead as the individual refused interpreter.

c) I have had to pay for my own interpreters to ensure that I am receiving all the information I require, at a pace and a distance that I prefer, at my NDIS planning meetings.

d) An urgent request for review was made due to serious medical issues. Response time was one month.

e) Repeated requests for additional time for meeting has also been denied , required due to complex communication needs, fatigue related to deafbliness and processing time for participant

Example 3:

NDIS participant with dual sensory loss AC (Perth) –

a) Every time I try to contact NDIS via the phone, I get so frustrated as they have no idea of how a blind person, deaf person, or deafblind person communicates. eg. My hearing is supported by devices but the NDIS person keeps talking despite saying I can’t hear them, please slow down! This frustration leads me to giving up or giving the phone over to a support person. Where is my right to making my own decisions and privacy?

  • b) Portal – too time consuming as poor accessibility. AC has to sit for 3-4 hours just

to put in my own payments.

  • c) I don’t have choice and control as my old devices do not support the increasing reliance on Portal Access to manage accounts and information by NDIA and a new system is not recognised nor provided under NDIS funding.

Additional:

Recent experience with numerous clients having their plans rolled-over. The clients are now using their own funding to be supported to request a review as the plan is missing out on circumstances that have changed and additional AT equipment that has been identified.

Support - Recommendation 2

That if a person is identified as having combined vision and hearing disabilities, they do NOT have to identify a primary disability as blindness or deafness, but can identify their primary disability as being deafblindness for the purpose of independent assessments.

Note: this recommendation is consistent with recommendation 1 of Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

Individuals living with deafblindness identify as deafblind and it is disrespectful to ignore their right to choose; each sensory component impacts directly on their choice of providers, supports and appropriate assistive technology.

b) the impact of similar policies in other jurisdictions and in the provision of other government services;

As mentioned above, generic disability services are inadequately equipped to address the inherently complex needs of Australians with deafblindness. This is true also for the provision of healthcare and education.

The submission made to the review of Disability Standards for Education 2005

(Deafblind Australia, 2020) highlights the ways in which Australian education systems

are inadequately meeting the needs of students with deafblindness.

There is also an increasing body of evidence that mainstream health services do not

adequately meet the needs of people with deafblindness (see Alexander & Alper 2014; Ellis, Keenan & Hodges 2015; Fernández-Valderas, Macías-Seda & Gil-García 2017; Sense UK 2016; Stoffel 2012; Takahashi 2019).

This recognition that people with deafblindness require specialist supports and

approaches to ensure they can access and be included in all aspects of civic life is

equally true for the process of independent assessments.

c) the human and financial resources needed to effectively implement independent
  
  assessments;

Throughout Australia there are insufficient skilled, trained and experienced service

providers to meet the needs of Australians with deafblindness.

No work has been undertaken by the NDIA to address the need for workforce

development to upskill staff to ensure the level of quality of services required to meet

the needs of people with complex disabilities such as those with deafblindness.

While it is recognised initial financial investment is required to increase workforce

capacity and skill, this will ultimately lead to improved sustainable outcomes for people

with deafblindness, increased independence and greater achievement of the NDIA’s

objectives.

d) the independence, qualifications, training, expertise and quality assurance of assessors;

Concerns Regarding Independent Assessor Advertisements

It is concerning to see advertisements for Independent Assessors stipulating only one years’ experience required.

Plena healthcare posted an advertisement on Seek on the 2nd March, 2021 advertising roles for Independent Assessors stating:

‘To best support our clients, you will need:

  • A bachelor’s degree
  • Current AHPRA registration or limited registration & Australian working rights
  • 12 months work experience post your general registration
  • Working with Children Check / Working with Vulnerable People Check
  • A genuine focus on client centered care and assessment / paediatric care and assessment’

Without specific training an independent assessor is unlikely, with the standard assessment tools, to adequately recognise and address the complexities, including the broader social and service environment faced by children with complex deteriorating conditions and the needs of their families.

Research shows that the mental health and well-being of parents caring for a child with a disability are well below that of parents of children without disability (Davis et al., 2019) reducing their capacity to provide the additional high-level care required, risking poorer outcomes for the child. A primary caregiver who is capable of, and has access to a multitude of resources is better equipped to be able to support the health and development of their child living with rare disease (Bourke-Taylor, Howie, Law, & Pallant, 2011).

There is no assurance that this support can be provided during an independent assessment by an assessor with “genuine focus on client centered care and assessment / paediatric care and assessment” rather than someone with demonstrated skills and qualifications in support for a complex child with disability.

A whole new work-force has to be recruited as part of the transition to Independent

Assessments for both adults and children. It is essential that experienced staff only are

recruited for complex disabilities

Support - Recommendation 3

That if a person is identified as having combined vision and hearing disabilities, that an Independent Assessor must have a minimum of 3 years’ experience in the disability sector and undertake mandatory deafblind awareness training developed specifically for independent assessors.

Note: this recommendation is consistent with recommendation 2 of Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

e) the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;

There are several rating instruments available to assess cognitive abilities in children, some examples include: (a) the ability to carry out tasks of daily living/adaptive behavior [i.e., Vineland Adaptive Behavior Scales (Vineland-3); Sparrow et al., 2016 and Adaptive Behavior Evaluation Scale (ABES-3); Harrison and Oakland, 2015] and (b) the ability to manage oneself in flexible ways/executive functions [i.e., Behavior Rating Inventory of Executive Function (BRIEF); Gioia et al., 2000]. The Vineland, ABES, and BRIEF have been used to assess cognitive abilities in children with CHARGE syndrome (Salem-Hartshorne and Jacob, 2005; Hartshorne et al., 2007; Abadie et al., 2020).

It is reasonable to say that there are almost no standardized rating instruments that include specific norms for comparisons with children who are deafblind. Consequently, adaptive behavior scales “are not especially sensitive to the development and learning modalities of children who are deafblind” (Chen et al., 2009, p. 326). Thus, the evaluator must be aware that some items or domains in traditional rating measures are probably inappropriate and could be easily misinterpreted (Salem-Hartshorne and Jacob, 2005).

Accordingly, the overall scale profile would appear atypical and might not cover the scope of the functional skills that a child who is deafblind has achieved.

Adaptive Behavior Scale

adaptive behavior scale is applied, it is important that information about the child’s functional ability is gathered from multiple sources and then integrated with the results from the behavior scale to make important decisions about the overall cognitive functioning of a child who is deafblind.

However, there are a few rating measures designed specifically for children with deafblindness, for example, the Callier-Azusa Scale (Stillman, 1974) and the Child- Guided Strategies (Nelson et al., 2002). A case study has shown that when using the Child-Guided Strategies as an assessment measure, it was possible to reveal fundamental problem solving and memory skills that provided information for further support for a child with deafblindness (Damen, 2020).

In essence, the use of standardized normative measures alone is insufficient to yield accurate predictions of cognitive abilities in children with deafblindness. It is, therefore, esential that a child who is deafblind be afforded multiple assessment pathways for cognitive assessments.

The WHODAS also has limitations in use with people with deafblindness. The questions are abstract and subjective. Most questions use flashcards to remind the respondent of key information. The text (point to flashcard #) appears at each point where a flashcard is to be shown. This is inappropriate for people who are blind and deafblind.

The WHODAS 2.0 covers mainly the activities and participation domains of the ICF, so bodily impairments and environmental factors are not included.

https://www.tandfonline.com/doi/abs/10.3109/09638288.2013.782360

The WHODAS 2.0 implicitly favors a medical interpretation of disability rather than viewing disability through a functional and more progressive social lens. Also the WHODAS 2.0 may not be appropriate in contexts where social perspectives on disability are considered important, The WHODAS 2.0 does not capture the extra time that activities often take for a person with disability in general and deafblindness in particular (e.g. I can do the vacuuming,

But it takes me hours because in order to find the dust I have to go over every inch of the house, whereas a sighted person can see where the dust is and get the job done in minutes) and, they provide no way of measuring the impact when activities are not undertaken because of uncertainties about whether you’ll receive support as a person with a disability. For example a person with deafblindness stated “I’ve lost count of the number of times I haven’t gone to events because I have no confidence that hearing loops work in practice”. Also, the tools don’t take into account the varying situations in which activities are undertaken e.g. “do you have trouble eating”” – “well it depends on where I am and what I’m eating - which isn’t one of the options in the tool“ .

With the increased availability and accessibility of genetic testing, Usher syndrome is now diagnosed in children in their first years of life, often before the onset of retinitis pigmentosa, the eye condition causing deteriorating vision loss in children with Usher syndrome. An independent assessment may show good functional vision for the child, but does not address the functional capacity required for the child to ensure they have the skills to cope with deteriorating vision loss.

Adults with Usher syndrome become more dependent on others for daily tasks, have higher rates of unemployment, and are more likely to use health services compared to those without the condition (Garip & Kamal, 2019). Also, those living with Usher syndrome are more likely to experience higher levels of distress and depression and report lower levels of quality of life compared to adults living without the condition.

Supporting young people with Usher syndrome and their families to develop approaches to cope, manage, and adapt to living with Usher syndrome before the functional impact of vision loss is significant will improve the quality of life, as well as ameliorate the costs to society.

Lived Experience Example:

Mr AC (NDIS participant): despite fully documented evidence put forward at planning meeting to support MR AC to move house, NDIS funding was not successful, putting Mr

AC who is deafblind at significant risk, as insufficient support to support his orientation

to new home, new community, new services, new staff etc

Ms. KS (NDIS participant): has applied for Specialist support coordination at every planning meeting and never received it. The support to explain the plan as well as understanding the choice and control for getting the most suitable services and support is not understood by generic support coordinators.

Mr ES (NDIS participant): Deafblindness is a complex, multi-faceted disability. Where is the respect and understanding of deafblindness if the tools to assess aren’t even accessible?

Other Examples:

ME: x 2 emails in the last week from support coordinator agencies (AP Support Coordination and Lamp Inc.) asking for advice on how can they support a person who is Deaf.

ME: Assessment tools simple examples of inaccessible and inappropriate.

a) To a person with Vision Impairment – assessment of spatial awareness: draw in a clock face (the vision impairment interferes with the spatial awareness rather than demonstrates it)

b) To a person who is Deaf and being supported by an interpreter – assessment of following commands: place left hand on right elbow (correctly the interpreter demonstrates via a visual language the information, which is also the answer)

Support - Recommendation 4

To ensure the children with complex, deteriorating conditions such as those causing deafblindness are adequately supported through independent

  • assessments, and that future functional capacity is taken into consideration to optimise

children’s capacity to cope with and manage their changing abilities.

 f)  the implications of independent assessments for access to and eligibility for the

  NDIS;

Possibly the most concerning implication of the introduction of Independent

Assessments is the likelihood of already marginalised individuals who are eligible for the

NDIS falling through the cracks and being underserviced or worse, receiving no service.

The level of communication breakdown experienced by people with

deafblindness even with skilled, familiar communication partners will be

significantly multiplied with unfamiliar and unskilled (in deafblindness)

Independent Assessors.

The combination of the need for Auslan interpreters, complex and abstract language of

assessment tools, and individuals with deafblindness wanting to present as competent

and independent (as we all do) will most likely lead to the complexities and daily

challenges with ALL tasks being over simplified and overlooked.

People with deafblindness who are Auslan users require Auslan interpreters who are

experienced in working with people with deafblindness to optimise efficacy of

interpretation.

People with deafblindness should also be supported to bring a familiar person to the

independent assessment to assist in bridging the access and inclusion gap which

interacting with an unfamiliar person will precipitate. Some individuals with

deafblindness, due to limited educational opportunities and limited access to high

quality communication support over many years, have developed idiosyncratic ways of

communicating which an Auslan interpreter even skilled in deafblindness may

experience difficulty interpreting. In these instances it is imperative that a

  • communication partner who knows the person well, is present at an independent assessment to ensure access.

It has been reported that there is an increasing number of NDIA services being provided via phone or online. For people with deafblindness, including those who are Auslan users and require an interpreter, it is imperative that meetings are held face to face in order to allow for optimal communication and information access and reduce communication break-down.

Support - Recommendation 5

That if an Auslan interpreter is required for the Independent Assessment that ideally an interpreter familiar with the person with deafblindness is booked, and as a minimum that an Auslan interpreter with experience working with people with deafblindness is booked.

Note: this recommendation is consistent with recommendation 3 of Consultation – Deafblind Community WA NDIA Easy English (Deafblind West Australians, 2021)

Support - Recommendation 6.

If a person is identified as having combined vision and hearing disability (deafblindness) independent assessments MUST occur face to face.

Needs to be non-negotiable to ensure that participants are able to have full access to information and the process. Accurate assessments and meaningful planning meetings for people who are deafblind are only possible in a face to face setting. This is an ongoing argument that participants are facing with LAC’s and planners with little to no understanding of their support and communication needs.

g) the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;

  • There remains a lack of clarity about how Independent Assessments interact with an

  • individual’s goals to ensure adequate supports are in place to achieve the stated goals.

  • Functional assessment alone should not dictate the level of supports required, as two

  • people with the same functional ability may have significantly different goals and

  • aspirations requiring a high frequency and duration of support.

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

The report from the Tune Review discussed the opportunity for independent functional capacity assessments to be used “for every person with disability who would like to test their access for the NDIS or who require further evidence to support decision-making about the supports in their plan.” However, the report specifically highlights:

  • The need for consultation with people with disability in implementing this approach

  • The risk of disengagement by people with disability if there are concerns around the independence of assessors and their appointment by the NDIA, and if assessments are perceived to be “a tool designed to cut supports from participants.

For these reasons, the report recommends the NDIA be given discretionary powers to require participants undergo assessments. There is no mention of mandatory IA in the report. Further, the report largely focused on IA as a tool to support more equitable entry as many potential participants cannot access or afford the required appointments and assessments needed to enter the scheme.

Support - Recommendation 7

That people identified as having combined vision and hearing disabilities (deafblindness) are able to request exemption from participating in Independent Assessments, unless specifically requested by them, or there are no professionals with

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expertise in deafblindness in their area. There is an undertaking by NDIA to provide an alternative, qualitative assessment that is valid with individuals who have a combined vision and hearing disability.

  • opportunities to review or challenge the outcomes of independent assessments;

It is imperative that there are clear and transparent processes for individuals who have received an Independent Assessment to request a review or challenge decisions made by the independent assessors.

  • the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds;

People with deafblindness who are Auslan users fall in the category of Culturally and Linguistically Diverse, yet have the compounding complexity of their language other than English (Auslan) being accessed through either vision which is impaired, or touch which cannot simultaneously relay the same level of information as can be relayed visually. As previously stated, this contributes to complex communication support needs and again lends weight to the need for recommendations 5, 6 and 7 to be adopted.

The Australian Federal Government recognised Auslan (Australian Sign Language) as a language in 1987.

Auslan is a visual language with its own grammatical structures, which are different from those found in English. Auslan is less fixed in terms of word order when compared to the English language. This means that sentence structures are also less fixed. However, there are still some conventional rules and guidelines for using Auslan, which help guide communication.

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Therefore, Auslan uses are being assessed by an individual using tools in their second

language, via an interpreter or AT whilst comprehending complex information

complicated by the presence of visual impairment.

k) the appropriateness of independent assessments for people with particular

disability types, including psychosocial disability;

This submission focuses on how poorly equipped Independent Assessors are and the

NDIA in general is, to adequately meeting the complex needs of individuals with

deafblindness. The recommendations made in this submission are aimed at ensuring

the Independent Assessment process can be optimised to ensure people with

deafblindness have equal access and do not fall through the cracks of this new system.

l) any other related matters

Support - Recommendation 8

If people with deafblindness are participating in Independent Assessments that

communication regarding the assessment is provided in accessible formats, accessible

to the unique and complex needs of a person living with deafblindness

The emails and social media notifications sent regarding the independent assessment

trials were in language that was extremely complex and dense; therefore, many

individuals within the deafblind community did not understand them and did not respond

to them. This is a common occurrence within the community’s experience with NDIS – including the NDIS’ own website.

REFERENCES

Abadie, V., Hamiaux, P., Ragot, S., Legendre, M., Malecot, G., Burtin, A., Attie-Bitach, T., Lyonnet, S., Bilan, F. Gilbert-Dussardier, B. & Vaivre-Douret, L. (2020) Should autism spectrum disorder be considered part of CHARGE syndrome? A cross-sectional study of 46 patients, Orphanet Journal of Rare Diseases, 5 (136)

Alexander & Alper (2014), Not fade away: a memoir of senses lost and found

Blake, K. D. and Prasad, C (2006) CHARGE Syndrome, Orphanet J Rare Dis. 1: 34. Accessed 25 Nov ember, 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1586184/

Bourke-Taylor, H., Howie, L., Law, M., & Pallant, J. F. (2011). Self-reported mental health of mothers with a school-aged child with a disability in Victoria: A mixed method study. Journal of Paediatrics and Child Health, 48(2), 153–159. doi: 10.1111/j.1440- 1754.2011.02060.x

Carvill, S. (2001) Sensory impairment, intellectual disability and psychiatry. Journal of Intellectual Disability Research 45: 467–83.

Chen, C., Alsop, L., and Minor, L., (2009) Implications for Early Intervention Services to Infants who are Deaf-Blind and Their Families: Lessons from Project PLAI in California and Utah:

Currie, G., & Szabo, J. (2018). “It is like a jungle gym, and everything is under construction”: The parents perspective of caring for a child with a rare disease. Child: Care, Health and Development, 45(1), 96–103. doi: 10.1111/cch.12628

Davis, E., Young, D., Gilson, K.-M., Reynolds, J., Carter, R., Tonmukayakul, U., … Carracher, R. (2019). A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of a Child With a Disability Accessing an

Early Childhood Intervention Service: Protocol for a Stepped-Wedge Design Trial

JMIR Research Protocols, 8(4). doi: 10.2196/12531

Deafblind Australia (2020) Submission to the review of Standards for Education 2005

Deafblind West Australians (2021) Consultation – Deafblind Community WA NDIA Easy English

Ellis, Keenan & Hodges (2015) es of people with dual sensory impairment attending rare syndrome clinics, Sense UK

Fernández-Valderas, C., Macías-Seda, J. & Gil-García, E. (2017) Experiences of deafblind people about health care, Enfermeria Clinica, DOI:10.1016/j.enfcli.2017.03.011

Garip, G., & Kamal, A. (2019). Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life. BMC Ophthalmology, 19(1). doi: 10.1186/s12886-019-1169-z

Gioia, G.A., Isquith, P.K., Guy, S.C. & Kenworthy, L. (2000). Behavior Rating of Executive Function. Lutz, FL: Psychological Assessment Resources.

Hartshorne, T. S., Nicholas, J., Grialou, T. L. & Russ, J. M. (2007). Executive function in CHARGE Syndrome. Child Neuropsychology, 13, 333-344.

Kiani, R. and Miller, H. (2010) Sensory impairment and intellectual disability. Advances in psychiatric treatment 16, 228–235

Sense UK (2016) Equal access to healthcare: The importance of accessible healthcare services for people who are deafblind

Kimberling, W. J., Hildebrand M. S., Shearer A. E., Jensen M. L., Halder J. A., Trzupek K., Cohn E. S., Weleber R. G., Stone E. M,. Smith R. J. (2010) Frequency of Usher syndrome in two pediatric populations: Implications for genetic screening of deaf and hard of hearing children. Genetics in Medicine 12, 512–516.

Meuwese-Jongejeugd, A., van Splunder, J,, Vink, M., Sietse Stilma, J., van Zanten, B., Verschuure, H., Bernsen, R., Evenhuis, H., MacLean Jnr, W. E., (2008) Combined Sensory Impairment (Deaf–Blindness) in Five Percent of Adults With Intellectual Disabilities, American Journal of Intellectual and Developmental Disability, 113 (4): 254– 262.

Salem‐Hartshorne, N. and Jacob, S. (2005) Adaptive behaviour in children with CHARGE syndrome, American Journal or Medical Genetics

Stillman, R. D. (1974) Assessment of Deaf-Blind Children: The Callier-Azusa Scale.

Stoffel, S. M. (2012) Deaf-blind Reality: Living the life, Gallaudette University Press

Takahashi, N (2019) Accessibility for people with deafblindness when getting medical services, Deafblind International 17th World Conference, Gold Coast, Australia

World Federation of the deafblind (2018) At risk of exclusion from CRPD and SDGs implementation: Inequality and Persons with Deafblindness- Initial global report on the situation and rights of persons with deafblindness

Zurynski, Y., Frith, K., Leonard, H., & Elliott, E. (2008). Rare childhood diseases: how should we respond? Archives of Disease in Childhood, 93(12), 1071–1074. doi: 10.1136/adc.2007.134940

Consultation: Deafblind Community WA &

NDIA

Recommendations

1) Deafblindness to be recognised by NDIA as a unique and distinct disability type which is identified in the NDIA business system.

Projected plan build for a person with deafblindness will be based on draft funding appropriate to deafblind disability and will vary based of the severity of the functional impact of the impairment/s. a. Deafblind West Australia report that currently NDIS plans rarely align to functional need. Deafblindness needs to recognised as a distinct disability which can then be properly aligned to NDIS supports. The impact of deafblindness is totally different from experiencing deafness or blindness and can result in extreme isolation without appropriate support to mitigate the impacts of impairment/s. b. Deafblindness being recognised as a distinct disability will enable meaningful adoption of an insurance based approach towards deafblind disability which can be informed by actuarial analysis resulting in the provision of appropriate funding for supports for people who experience deafblindness.

2) NDIA will provide (for planning appointments) participants who experience deafblindness with a qualified interpreter experienced in deafblind communication methods.

a. NDIA staff, having received the training described in recommendation 3 will have an understanding of the differing communication needs of people who experience deafblindness (for some sign language, some tactile language or a mix of both). b. The voice of the NDIS participant can only be heard if they are supported to communicate in a language appropriate given the functional impact of their impairment. c. NDIA will continue to improve accessibility of online resources/portal to support deafblind communications.

3) All NDIA staff and partners who work with specialists and members of the deafblind community to have access to deafblind specific planning practice guidance and be trained in deafblind awareness to have an understanding of the impacts and support needs of those who experience deafblindness.

a. NDIA to develop practice guidance and a compulsory online training module for all staff and partners working with deafblind participants (including plan builders, plan delegates, and administrative staff booking planning appointments). b. A deafblind consultant (allied health professional or teacher who has additional specialist skills and broad knowledge of deafblind disability) to be contracted to work with NDIA to contribute to the production of the required internal practice guidance and online training module.

4) The needs of the deafblind community are fully considered as part of the consultation and later implementation stages of the Independent Assessments reform. Findings from the pilot and submissions on the reform papers to be separetly considered and acknowldeged (direct to Deafblind West Australia) by the relevant policy and research areas within NDIA.

a. Up to five (not less than one) participants who experience deafblind disability are to be included in the 2nd Independent Assessments Pilot occurring from from October 2020 to mid-2021.

b.

Two private consultative sessions on the recently published reform papers to be held in Perth. NDIA to provide support for community members to provide submissions on the papers (submissions close 23 February 2021).

Background Information

The purpose of this consultation is to identify key recommendations that can be operationalised by the NDIA to overcome mounting concerns about the participant experience and the quality of plans for deafblind participants. This collaborative work between Deafblind West Australians and NDIA commenced following complaints to NDIA about the participant experience including a complaint to the Australian Human Rights and Equal Opportunities Commission (AHREOC) which was settled by agreement. The terms of the mentioned AHREOC agreement included a clause that NDIA would undertake consultation with the deafblind community in WA to collaboratively identify changes that can be implemented by NDIA to address the concerns raised. During the consultative process information was provided to NDIA of a possible further class action to AHREOC on behalf of up to ten NDIS participants who consider their human rights have been violated by the NDIA during the NDIS planning process. NDIA and the Deafblind community in WA are committed to finding solutions:

  • All parties acknowledge that the Deafblind community and NDIA need to work together to get the participant experience right at all touchpoints along the NDIS pathway, for people who experience deafblindness.
  • All parties acknowledge the commitment and positivity of all members of the working group to find ways to move forward together in a positive way.
  • Broadly community inclusion objectives have been funded through Information, Linkages and Capacity Building (ILC) to support DeafBlind individuals (grant to DeafBlind Australia). This consultative work is focused on NDIS and the participant experience for deafblind people.

Process

The agreed consultative workshops were unable to proceed as planned because of the COVID situation (COVID has resulted in significant delays to the progress of this work). The amended format of this consultation is as described below:

  • Three meetings between the project group members (NDIA, lawyer from Midlas and deafblind consultants from Senses Australia) to workshop through large volumes of existing materials and recommendations and find real solutions that can be implemented by NDIA (resulting in the four recommendations provided at the beginning of this document).
  • The four recommendations to be presented by the working group to the Deafblind Board of WA at an extraordinary meeting in January 2021.
  • The Deafblind Board of WA to accept these recommendations (with amendments if required) when satisfied that they have the approval of the broader lived experience group (small individualised consultation to occur).
  • The Deafblind Board of WA request that these four recommendations be accepted and implemented by the NDIA to improve the participant experience and the quality of NDIS plans for members of the deafblind community.