Mental Health and NDIS

Facebook Support Group

17 February 2017

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

deeply concerned about the current state of services provided under the NDIS for individuals facing psychosocial disabilities linked to their mental health conditions. We firmly believe that the NDIS holds significant promise in enhancing the quality of life for those grappling with mental health-related impairments while enabling them greater participation opportunities within society’s fabric. Nevertheless, it is imperative we address critical gaps present within both legislative frameworks governing this initiative as well as operational challenges faced during implementation phases across various regions throughout Australia today. Furthermore, there exists an urgent need towards resolving discrepancies arising from differing interpretations applied consistently among personnel working directly alongside beneficiaries seeking access through these programs - such inconsistencies have led numerous applicants experiencing undue stress levels ultimately resulting many giving up entirely due feelings overwhelmed or discouraged after repeated attempts without success thus far encountered so far. If you wish further details regarding any aspect covered above please reach out immediately via email correspondence directed specifically toward Mr Gregory Franklin who currently serves dual roles simultaneously acting capacities including but not limited solely administrative functions associated exclusively managing operations related strictly confined boundaries defined explicitly by terms outlined clearly beforehand established prior agreements made publicly available openly accessible resources located conveniently situated easily reachable locations wherever possible whenever convenient suitable times chosen freely independently decided upon personally individually determined preferences respected honored maintained continuously upheld perpetually ensured protected safeguarded preserved retained kept secure safe guarded against potential threats risks dangers posed externally internally alike equally important considerations taken into account weighed carefully thoroughly 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Mental Health and NDIS Facebook Support Group Submission

About the Mental Health and NDIS Facebook Support Group

The Mental Health and NDIS Facebook Support Group was created in November 2016 to assist those with a mental Illness, their families and carers in navigating the NDIS. The need for the group is profound, due to the many inconsistencies in its implementation, a lack of practical support from the NDIA, and to assist those whose mental wellness was being seriously compromised by the application, planning, and review process. Knowledge sharing forms a key component of the group, with those few having success in their transition to the NDIS sharing the strategies they used. The group currently consists of 723 members and is growing quickly. It is limited to only people with a mental illness, their family members, carers and Australian Citizens. Each applicant is screened before being accepted, to try and ensure that members can speak freely about experiences with the NDIA and Service Providers, without fear of retribution, that some have experienced, after complaints to the NDIA on staff behaviour, and Service Providers.

Executive Summary

The Mental Health and NDIS Facebook Support Group welcomes the opportunity to provide feedback to the committee on the provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition. As a group we feel that the separation of physical and mental disabilities is not always possible. Many people have comorbid physical conditions, sometimes due to medication. We believe a more Holistic attitude should be adopted. We look forward to the national implementation of the NDIS, and we hope that the NDIS will mean all people with a disability can live a much fuller and socially inclusive life.

In providing feedback on the terms of reference for this submission we intend to focus on the inconsistencies with the interpretation of the Act and its Rules within the NDIA, the onerous and time consuming application process, the difficulties faced because of the disconnect between mental health terminology and practice and the NDIS required terminology, resulting in many applicants, who do not have the emotional resources to ask for a review, being rejected. . This is primarily due to the fundamental inconsistency between the concept of permanency, central to the NDIS, and the focus on recovery by those being treated by mental health professionals. In addition many applicants accepted to become participants are not having the goals as agreed with the Local Area Planning Coordinator, (LAC), being accepted by the NDIS Plan Reviewer. This is mainly seems to be due to a lack of knowledge by reviewers of not only Mental Health, but a lack of knowledge of the NDIS Legislation and rules. This once again places with a psychosocial disability in the often

Key Recommendations

• That the NDIA apply the Act and Rules when undertaking their roles consistently across the entire organisation, eliminating the many and varied individual interpretations.
• That the NDIA review all applications that were rejected to ensure that the applications were rejected in accordance with the Act and Rules.
• That staff with suitable recognised qualifications in Mental Health be allocated to Psychosocial applicants and participants.
• That all staff be given basic training in mental health terminology
• That NDIA staff be reminded of, and/or give training in the Disability Discrimination Act
• That people deemed ineligible continue to receive the same or better support they are currently receiving.
• That all current services such as PHaMS remain in force until all people with a Psychosocial Disability are receiving the same level of service, regardless of whether they have been granted access to the NDIS, or denied access.
• That the NDIA cease denying access to people suffering a Mental Health Condition as diagnosed by a Qualified Health Practitioner as being a condition listed in DSM-5, because they deem the condition medical. NDIA staff are placing themselves above Psychiatrists in knowledge of a specialised field, and in doing so demeaning both the applicant and their treating Psychiatrist.
• That the NDIA provide Psychosocial applicants and participants with advocates at access, participation, and any other stage their disability requires they need an advocate, to assist so as to ensure they are on an equal footing as someone without a disability, as per the Disability Discrimination Act.
• That support detailed in the Act and Rules is given to carers

a. The eligibility criteria for the NDIS for people with a psychosocial disability

This is the most problematic area for people within the group. The Act states:

24 Disability requirements

(1) A person meets the disability requirements if: (a) the person has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or to one or more impairments attributable to a psychiatric condition; and (b) the impairment or impairments are, or are likely to be, permanent; and c) the impairment or impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: i) communication; ii) social interaction; iii) learning; iv) mobility; v) self-care; hex) self-management; and (d) the impairment or impairments affect the person’s capacity for social and economic participation; and (e) the person is likely to require support under the National Disability Insurance Scheme for the person’s lifetime.

(2) For the purposes of subsection (1), an impairment or impairments that vary in intensity may be permanent, and the person is likely to require support under the National Disability Insurance Scheme for the person’s lifetime, despite the variation.

People are being rejected solely on the basis of a diagnosis. For example people suffering from PTSD or cPTSD, Chronic Depression,, Chronic Anxiety, to name a few diagnosis under DSM 5, are being told they do not meet the eligibility requirements because the condition is not on the list of acceptable disabilities, and is a Medical Condition. To the best of our knowledge the list referred to does not state that the conditions in it are the only conditions acceptable, but is an indicative list. This is in complete contradiction to the act. Those who have asked for a review have had the original decision upheld. Others in the group have had their applications refused simply because:- 1. The terminology used by the health professional providing the diagnosis is not understandable by the NDIA. 2. The condition is deemed not to be permanent, without any explanation as to what constitutes permanency. One such person with Schizophrenia was denied access due to this. 3. The condition is not severe enough to warrant inclusion in the NDIS. This is determined after a telephone call from an NDIA employee who asks a few questions on the applicants’ social skills. As many people with psychosocial disabilities are episodic, this method of determining eligibility is problematic. Again, a person within the group with Schizophrenia was rejected, as it was deemed they did not meet the eligibility criteria at the conclusion of the questioning, as did a person diagnosed with Bipolar Disorder. Both conditions are episodic. 4. There are many other examples of inconsistency in interpretation of the act by the NDIS Staff in this regard. Yet the NDIS legislation and Website information is reasonably clear in most of the groups view; for example “It is important to note that the NDIS does not require that you will have a permanent disability in order to be eligible for the scheme. For participants, the individualised support model and emphasis on maximising choice and control of the NDIS are strongly aligned with the recovery factors identified as being important for people in order to regain self-agency and have opportunities to participate in and contribute to their communities.” Source: https://www.ndis.gov.au/html/sites/default/files/documents/NDIS-Mental-Health-Key-Themes.docx 5. Many applicants are being denied access without the NDIA access intake member applying the segment of the act, 24c, regarding reduced functionality and inclusion. the impairment or impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities: (i) communication; (ii) social interaction; (iii) learning; (iv) mobility; (v) self‑care; (vi) self‑management;. Determination of the permanency or of the likelihood of permanency, in relation to this impairment is usually made on the basis of evidence provided by a qualified medical practitioner, including evidence that the condition itself has been addressed within the mainstream mental health system. 6. Another factor faced by many applicants is the constant and exhausting request for more and more documentation to support their claim. Again this appears to because the NDIA staff have insufficient knowledge of Psychosocial Disabilities 7. There have been incidents of group members posting contemplating or undertaking self- harm, as a result of the way they have been treated by the NDIA. As an Administrator of the

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        group there is little I can do than encourage them to call a support, or if they no longer have
         supports because of the NDIS, calling 000. Incidents are increasing. At time of writing I have
         only lost communication with one person in this mental state, and can only hope they have
       been hospitalised, and not succeeded in their attempt.
       8.   It needs to be understood that a person suffering from a mental health condition is at a
         disadvantage because of their disability, when the NDIA acts in the ways just outlined, with
         the result being the person simply gives up, and does not continue with their application. In
          addition many suffer severe episodic effects as a result.

  Recommendations



        1.  That the NDIA apply the act and rules as written
        2.  That NDIA staff be reminded of their obligations under the Disability Discrimination Act.
        3.  That the NDIA review all applications that were rejected to ensure that the applications were
           rejected in accordance with the Act and Rules, and not because of reasons as outlined.
        4.  That NDIA staff receive training in medical terminology or
        5.  Only specialised staff with a mental health background be assigned to mental health
            applications, or
        6.  A suitably qualified person be offered to Psychosocial applicants and participants by the
         NDIA, or
        7.  when requested by the applicant/participant to advocate on their behalf. .

       b.  the transition to the NDIS of all current long and short term mental health
      Commonwealth Government funded services, including the Personal Helpers and
       Mentors services (PHaMs) and Partners in Recovery (PIR) programs, and in
          particular;
           i.   whether these services will continue to be provided for people deemed ineligible
          for the NDIS

       This a major concern for many members of the group, in particular for those people in regional
       areas that do not have mainstream services as specified in the act. At this stage the transition is
      not occurring in many cases,. In addition the services are not continuing for people deemed
         ineligible, particularly PHaMs and PIR. This is resulting in many having to resort to overstretched
      Mental Health Crisis units when their conditions escalate to the point of self-harm. Other current
        services, such as the Foster Carer service is placing vulnerable mental health suffers who are
       currently in Foster Care, and their carers in a tragic situation, as the person in care is being
       forced to enter group home care, because they have reached the age where under the NDIS
      they no longer qualify for Foster Care. Many wards are extremely distressed as they do not wish
       to be separated from their foster families, and the foster families like wise do not wish to see
     them leave.

    Recommendations

            1.  That the ILC ensure that people refused admission to the NDIS be referred to a suitable
               free or government service in their area, to ensure they continue to obtain the
             treatment they need, and were receiving, prior to the implementation of the NDIS.
            2.  That the Foster Care issue be investigated as a matter of urgency as it appears to be a
              contravention of Human Rights.
            3.  That the rule that states that a person can be rejected because mainstream services
               already exist to assist the applicant, even if the services are not available in the
               applicants area, be amended to allow for acceptance into the NDIS if mainstream

Transition to National Disability Insurance Scheme (NDIS)

services are not available in the applicants area. By doing this the disadvantage and possible dire consequences for these people is eliminated, ensuring they continue to live a full and productive life.

c. the transition to the NDIS of all current long and short term mental health state and territory government funded services, and in particular;

• i. whether these services will continue to be provided for people deemed ineligible for the NDIS;

We are concerned that once the NDIS is fully implemented that services will no longer be available, particularly from those Not for Profit organisations that will no longer receive block funding. People have already reported that they can no longer access services because the NDIS is available, regardless of whether the person has been accepted by the NDIS. This is of particular concern for carers of children with a diagnosis of ASD level 1 under DSM5, who the NDIS are refusing access. These children are no longer able to access State Health Services such as Speech and Occupational Therapy. For those in regional areas this is critical, as private services are not readily available. Nor are they affordable for most people, as there is limited cover under Medicare.

Recommendations

1. That the States and Federal Government come to an agreement that ensures all eligible people suffering a debilitating Mental Health Condition continue to receive services required under fundamental Human rights Principals, for treatment and management of the conditions/s

d. the scope and level of funding for mental health services under the Information,

Linkages and Capacity building framework;

The group at this stage is only informally aware that a budget of $112mill has been allocated. We are not aware of the scope, but feel this may be limited if the above mentioned budget is correct.

e. the planning process for people with a psychosocial disability, and the role of primary health networks in that process;

The groups experience is that little if any input from primary health networks has been provided on an individual basis.

f. whether spending on services for people with a psychosocial disability is in line with projections;

The group cannot provide any input on this item.

g. the role and extent of outreach services to identify potential NDIS participants with a psychosocial disability;

The group cannot provide any input on this item.

h. the provision, and continuation of services for NDIS participants in receipt of forensic disability services;

The group cannot provide any input on this item.

• any related matter.

The group is very concerned about: i. The number of people suffering from a worsening of their condition in dealing with the NDIA ii. The lack of knowledge in the NDIS Act and Rules by many NDIS Staff. iii. The inability of the NDIA to provide phone call receipts, or other means of traceable records of discussion. iv. The inability by the NDIA to ensure the database has all communications entered. v. That advocacy is not funded by the NDIA until a case reaches the Administrative Appeals Tribunal. Mental Health Applicants require advocacy at the access and participant stages. This advocacy is provided by the Department of Social Services under NDAP. https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for- people-with-disability/national-disability-advocacy-program-ndap Currently this program is grossly underfunded, with some regions not having advocates available. vi. That support detailed in the Act and Rules is not being given to carers.