ACT HUMAN RIGHTS
ACT COMMISSION
Government . es Cy ee ee
«
SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE
NATIONAL DISABILITY INSURANCE SCHEME
INQUIRY INTO THE PROVISION OF SERVICES UNDER THE NDIS FOR PEOPLE WITH PSYCHOSOCIAL DISABILITIES
RELATED TO A MENTAL HEALTH CONDITION
FEBRUARY 2017
INTRODUCTION
The ACT Human Rights Commission (the Commission) promotes the human rights and welfare of all people living in the ACT. Respect and protection of human rights underpins all work within the Commission. The Commission is an independent statutory body established by the Human Rights Commission Act 2005.
The role of the Commission is to: ¢ independently handle complaints in relation to a range of services, and under discrimination law *® promote understanding of human rights and the welfare of all people in the ACT
® encourage service improvement and increase awareness of the rights and responsibilities of service users and providers
e provide advice to government and others regarding their human rights obligations ® provide advocacy for children, young people and adults experiencing vulnerability
e advocate for the interests of victims of crime.
The Commission has responsibility for overseeing administration of the Human Rights Act 2004 (ACT) (referred to hereafter as the HRA), which protects the rights, interest and wellbeing of persons in the Australian Capital Territory (ACT). Most relevant to issues raised in this submission, the HRA provides for equality before the law and the right to non discrimination (s8) — which includes discrimination on grounds of disability and/or mental health, and includes discrimination resulting from barriers to accessing services. Furthermore, there is an obligation under s40B of the HRA on public authorities and entities performing functions of a public nature (which includes provision of public health services and so may include NDIS providers) to act and make decisions consistently with human rights.
The Commission comprises four (4) members: the President and Human Rights Commissioner; the
Discrimination, Health Services, Disability and Community Services Commissioner; the Public Advocate and
Children and Young People Commissioner; and the Victims of Crime Commissioner.
Role of the Public Advocate and Children and Young People Commissioner (PACYPC)
The PACYPC has legislative responsibility for protecting and promoting the rights and interests of people in
the ACT who are experiencing vulnerability, and for consulting with children and young people in ways that |
promote their participation in decision-making.
Level 2,11 Moore St, Canberra City Phone: (02) 6205 2222 | TTY: (02) 6205 1666 Email: human.rights@act.gov.au
GPO Box 158, Canberra, ACT, 2601 Facsimile: (02) 6207 1034 Web: www.hrc.act.gov.au
The role of Public Advocate extends to all persons within the ACT whose situation or condition gives rise to a need for protection from abuse, exploitation or neglect, or a combination of those things.
The responsibilities of the PACYPC are underpinned by a range of functions including advocacy (individual and systemic), representation, investigation, and monitoring. Some of these functions are specific to children and young people, and others encompass people with complex disability needs, including those with mental health conditions and/or forensic patients.
Overarching these functions is a strong focus on ensuring that the PACYPC’s monitoring and oversight functions (and the recommendations that we make to government and non-government agencies on legislation, policies, and practices) contribute to improvements in the accessibility, responsiveness and quality of supports and services that are available for persons experiencing vulnerability.
Role of the Disability and Community Services Commissioner, and the Discrimination Commissioner
The Disability and Community Services Commissioner’s mandate is to consider complaints about the provision of services for people with disability (including mental illness), and/or for their carers. The Commissioner’s role is also to promote improvements in the provision of services for people with disability and their carers, and to promote an awareness of the rights and responsibilities of consumers and providers.
The Discrimination Commissioner’s role under the ACT Discrimination Act is to take complaints of unlawful discrimination under the Act. Unlawful discrimination occurs when someone is: treated unfavourably because of a protected attribute; and this occurs in public life.
RESPONSE TO THE TERMS OF REFERENCE
Eligibility criteria
Complaints and feedback received by the Commission have identified that barriers exist for people with psychosocial disability accessing the National Disability Insurance Scheme (NDIS). These barriers can be principally grouped against three key areas, these being those that relate:
e directly to the eligibility criteria; e to the process used by the National Disability Insurance Agency (NDIA) in applying the criteria; and
e tothe experience of people living with mental illness.
Advice provided to the Commission clearly indicates that many people with mental illness are not able to connect with the language of the NDIS.
The requirement to have “an impairment or condition that is likely to be permanent (i.e. it is likely to be lifelong)“ has created significant concern and difficulties for people with mental illness. The NDIA has
- clarified that “impairment of a chronic episodic nature may still be permanent” and we understand the NDIA accepts statements that the condition is likely to be ongoing or lifelong in determining eligibility.
However these concepts are not consistent with a recovery orientation, which underpins the service approach for people with mental illness. Many people with mental illness are therefore reluctant to engage with the assessment process from a core principles perspective amidst concerns that the assessment may give rise to a determination that their condition is permanent or ongoing. The labelling of their condition in
- NDIS Eligibility Criteria
this way is contrary to the principle of recovery orientation, and presents a barrier to engagement, particularly for young people with psychosocial disability. Further, some mental health professionals are unwilling to make statements about the permanency or ongoing nature of the person’s mental illness for similar reasons.
Some people with severe mental illness lack insight into or understanding of their condition and are often unwilling to agree to apply to a scheme called the National Disability Insurance Scheme or to be assessed as having a psychosocial disability. People with a mistrust of government, mental health services or the medical profession often refuse to engage with the process required to access the NDIS. They may already be assessing existing supports such as Partners in Recovery; however the process to access those supports typically did not require an overt assessment premised on generating the label of ‘disability’.
It has also been contended that some people with mental illness were declined access to the NDIS in their first application, with the lack of appropriate medical evidence as the contributing factor. Many mental health consumers are reluctant to appeal when they are denied access to the NDIS.
While the ACT Government’s disability and mental health services are providing the information for access determination for the people they are working with, this does not extend to all people with psychosocial disability. In situations where there are no existing assessment reports that are suitable, access to the NDIS may require prospective participants to arrange and fund assessments to provide to the NDIA. When this is needed, the cost of obtaining these reports is a significant barrier to accessing the NDIS.
Further, it has been reported that people often need to schedule a long appointment with their General Practitioner (GP) to obtain their assistance in completing relevant forms. As most ACT GPs do not bulk bill, this cost is prohibitive for many potential participants.
While it is recognised that when the assessment is requested by the NDIA there is no cost for the participant, it has been reported that this is not often used for access determination.
The length of time taken for the access process is of concern and results in some people disengaging with the process and others not getting the supports they require in a timely manner. While the legislation sets out a 21 day timeframe, the Commission has been told that, in practice, it often takes months. It was reported that for one person it took six (6) months to get a determination of eligibility. There is also a long wait between a person’s initial NDIS application and getting their plan. During this time, people are often not kept informed about the status of their application and the planning process. This has the potential to generate significant anxiety and/or lead to disengagement with the process.
Another significant barrier for people with psychosocial disability is the absence of supports that can assist them to access the NDIS. Where the person has no family or support network, or does not access services that might assist them to apply to the NDIS, they will face significant barriers to managing this process.
There is limited access to funding for pre-planning or pre-entry support particularly for people not engaged with existing disability and mental health services. Community advocacy and other non-government service providers have been supporting people to make access requests, as well as supporting them through the planning process. Advocacy organisations report that they are not sufficiently resourced for this role and their ongoing funding is not certain. Many providers report undertaking this activity during the ACT trial period without funding but it is unlikely that this will remain financially viable with full scheme implementation.
Transition to the NDIS
There appears to still be confusion about the process for transition of the current Commonwealth Government funded community mental health services, particularly for current users.
Governments have committed to the continuity of existing supports for people with mental health conditions who are not eligible for the NDIS but it is not clear how this will be fully implemented. It is also important to note that this Government commitment does not extend to people who would otherwise have accessed these supports in the future.
Access to lower-intensity community-based supports has enabled many people with mental illness to remain living in the community and supported their recovery. Timely access to lower-intensity supports is likely to prevent people requiring higher-intensity individualised support provided through NDIS plans or mental health services by attending to their needs before they experience substantial deterioration in their well being.
We understand that the level of funding allocated to the Personal Helpers and Mentor Service (PHaMS) will decrease as participants move into the NDIS. Conversely, the Day to Day Living and Partners In Recovery programs are considered to have strong alignment with, and will be fully rolled into, the NDIS. Of concern, however, is the submission from Mental Health Australia’ that identifies that up to half the participants for Day to Day Living may not be NDIS eligible. Non-government organisations delivering these supports have expressed significant concern for people who are deemed ineligible. There has not been sufficient information provided to enable clarity about the level of coverage of supports for people currently receiving these services who are not NDIS eligible.
The ACT Government has established the Community Assistance and Support Program (CASP). This program aims to provide community-based supports for people who are not eligible for the NDIS however it is unclear whether the funding available within this program will be sufficient to address the level of need for such individuals.
The transition of significant portions of the community-based mental health programs into the NDIS is resulting in a change to the range and scope of supports provided. Organisations supporting consumers
- report that many low intensity community groups that promote social inclusion are not viable under the NDIS funding model resulting in a loss of this type of activity and support. This reduces the choice available to people with psychosocial disability as these groups require both block funding for people not eligible for the NDIS and funding from NDIS participants purchasing group activities. Funding for group-based activities is not always seen as appropriate in the individualised funding models preferenced by the NDIS.
Organisations supporting people with mental illness and their carers report concerns with the transition of carer support services into NDIS and the resulting decrease in the availability of these services. This includes respite services that support the person with disability while providing respite to the carer. Although many of these supports can be included in plans, in practice they are not included if the NDIS participant says they do not want them, even though they are considered essential to carers. This is of particular concern to carers of people with psychosocial disability who do not have insight into their care needs and the impact on their carers. This has resulted in a significant increased burden to carers.
2 “The Implementation and Operation of the psychiatric disability elements of the National Disability Insurance Scheme: A recommended set of approaches”, Mental Health Australia, Submission to the Joint Standing Committee on the NDIS.
Information, Linkages and Capacity (ILC) building framework
Community capacity building enhances the lives of people with psychosocial disability through increasing opportunities for effective community participation and inclusion. There is a clear need for funding to continue building community capacity. In particular there is a need to develop and fund community-based services that support people with psychosocial disability by meeting lower intensity needs without the need to access individualised plans.
A critical feature for the ILC will also be to support people to access and effectively utilise their NDIS plans to achieve their goals. Many people with psychosocial disability do not have the knowledge and skills to navigate this new system and they need a deliberate planned strategy for capacity building. This capacity building has not been a focus during the ACT trial period and has created significant barriers to people with psychosocial disability accessing and fully utilising their NDIS plans.
An essential characteristic of the market approach on which the NDIS is based is effective consumers. An effective consumer cohort is underpinned by a strong advocacy sector. While strong robust systemic and individual advocacy is critical to the success of the NDIS, advocacy organisations report pressures from increased demand due the NDIS. They identify a lack of capacity to meet this need. The impact of restricted advocacy for NDIS participants is a loss of support to protect their rights and enable full participation in their community.
NDIS planning process and plans
The NDIS fact sheet “Psychosocial disability, recovery and the NDIS” identifies that the NDIS design and implementation will support the recovery approach. However organisations supporting people with mental illness indicate that this is not fully reflected in practice.
The NDIS planning process has changed and evolved during the trial period, and more recently has dramatically changed in the transition to full scheme implementation. The now truncated planning process often relies on telephone conversations; a difficult and inappropriate approach for people with severe psychosocial disability. The level of complexity of their situations and the need for plans that are very different from people with other types of disability is best managed through planning conversations that are undertaken in person by staff skilled in working with people with mental illness. It has been reported that the level of skills demonstrated by planners varies greatly.
Over the past six months there have been reports of a number of situations where the NDIS have advised that they will no longer fund supports they determined to be the responsibility of other sectors. This is a critical issue for people with psychosocial disability who usually have an ongoing level of engagement with mental health services. Further there have been reports that a number of participants have had their level of support decreased in second or third year plans despite their level of need not having changed.
It is acknowledged that the NDIS sits alongside a range of other service systems however close partnerships between systems do not appear to have been established at an individual level, nor within and across the Commonwealth versus state/territory jurisdictions. While the ACT site has been operating for more than two and a half years there appears to still be significant gaps between service systems and particularly complex mainstream systems like health.
The need for close connections between mental health services and NDIS funded supports is essential for a holistic approach. However, for many people, mental health case management and NDIS supports coordination is not well connected and does not deliver effective communication and integration.
NDIS supports coordination is also not funded to the level needed for people with significant complex situations. The allocation of coordination in plans appears to be based on “standard” amounts for particular client groups rather than what is reasonable and necessary for the individual. This is of particular significance for people with psychosocial disability with complex living situations who require a significant level of coordination between mainstream, informal networks and NDIS plan supports. For example, the Commission has been advised that plans are sometimes developed with very high levels of core supports but limited coordination for people who are able to meet most of their own personal care needs but who need significant levels of support to manage appointments, interpersonal interactions, interactions with services and to make decisions. It has also been contended that the NDIS plan was not sufficiently flexible to enable the person’s critical needs to be met.
The impact of psychosocial disability is often episodic in nature requiring different levels of support at different times. Effective NDIS plans will be able respond to this variable pattern of need without frequent reviews. NDIS plans can include higher level of supports for estimated time periods based on past patterns of need. However in practice, the focus on plan funding levels not exceeding benchmarks means that the level of funding for reasonable and necessary supports may not be achieved for people with episodic high support needs.
The NDIA advises that if a person’s need increases, a review of their plan can be instigated. However the NDIA also advises using the available funding fully before seeking a review. Many people are concerned that if they use the funding as needed for periods of high support they may be denied additional supports in a subsequent review.
Since the commencement of full scheme in July 2016, it has been reported that reviews are slow and at times have resulted in reductions in other supports. For people and their supports coordinators, the uncertainty of getting additional funding leads to using a lower level of supports throughout the plan in order to retain capacity to respond to high need times.
The lack of adequate NDIS ongoing supports is likely to impact on other support systems, particularly mental health services. While it is understandable that changes would occur during and following the trial period in the ACT, the level of change has been significant and costly for people with disability and providers. NDIS participants, family members supporting them, and organisations alike report a significant level of change fatigue. ,
It has been further reported to us that supports for adults with psychosocial disability in circumstances where their carer is seeking to have a break from their care-giving role are not given sufficient consideration in the NDIS plan. This often results from the participant identifying that they do not want the alternative support and the NDIS complying with the position of the participant. This has the effect, however, of compelling carers to provide support beyond their capacity or to place their family member at risk by not giving this informal support. Carers are seeking to be able to identify the limit of support they are able to provide and have this recognised in the planning process. Carers of adults should not have to justify the limits they identify as being capable of in their caring role.
Overall there is a wide variety of experiences for people with psychosocial disability in the NDIS planning process and in the implementation of plans. The breadth of experiences for ACT NDIS participants in part reflects the changes that have occurred over the trial period and into full scheme.
The planning process has undergone many changes over the trial period and more recently since transitioning to full scheme. Some of the changes implemented during the trial period appeared to effectively address the concerns raised by participants, their support network and providers.
These included:
® increased participation in the planning process of people from the person’s support network including trusted providers,
® recognition of the need to include supports coordination to enable plans to be effectively implemented, and
e timely changes to the plans due to change of circumstances.
However, since the commencement of the national transition to full scheme, organisations representing and supporting participants with psychosocial disability report significant reductions in these responsive features of the NDIS. A particular concern raised with the Commission is the increasing reference to plans being limited if they are over benchmark, rather than the plan being based on reasonable and necessary supports. This is of particular concern for people with high support needs from multiple conditions.
Forensic Disability Services
Another particular area of concern raised with the Commission is that the NDIS does not consider and put into plans the supports that are needed to enable an individual to comply with requirements imposed through the criminal justice system. For some people this lack of compliance is a direct result of their psychosocial disability and thus this condition or requirement may create a situation whereby the person is discriminated against.
In the past, disability and community mental health services may have funded support to enable this compliance in part or in full. If this support is not in place, the participant is at significant risk of harm to themselves either directly or a result of further criminal convictions or detentions. They may also pose a potential risk to the community.
In the ACT, forensic services are actively supporting people with psychosocial disability to apply to the NDIS with the aim to have this in place at the point of release. This is an important consideration in relation to justice reinvestment and avoiding future incarceration. A small number of situations exist where NDIS supports are put in place prior to release to prepare for release or to address housing and support arrangement to enable bail applications.
RECOMMENDED AREAS FOR IMPROVEMENT
It is respectfully submitted that the following recommendations would lend themselves to improvements in the accessibility of the NDIS for people with psychosocial disability:
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Re-word the access criteria for people with psychosocial disability to reflect contemporary practice in mental health, and in particular a recovery approach.
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Ensure pre-planning support and active assistance for people with psychosocial disability to exercise their right to access the supports for which they are eligible. This support should not be left to service providers funded through other funding sources, for example mental health services.
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The NDIA should use existing provisions to request assessments for the purpose of determining eligibility where there are no suitable existing assessments or reports and where, without obtaining a report, the person would not be able to able to exercise their right to apply for the NDIS.
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Accessible information should be more readily available to inform people about the process for the transition of existing community mental health programs into the NDIS, including details of alternative supports for people who are not eligible.
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The ongoing availability of lower-intensity, community-based participation supports should be monitored, with particular consideration for the impact on NDIS participants and people needing these supports who are not eligible.
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The planning process should focus on identifying and including all reasonable and necessary supports rather than imposing limitations based on benchmarked funding levels.
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Ongoing training and support must be provided to NDIA staff to enable them to interact effectively with people with psychosocial disability, including how best to engage in assessment and planning processes that are premised ona recovery orientation framework.
Jodie Griffiths-Cook
Public Advocate
Children and Young Peaple Commissioner
Karen Toohey
Discrimination, Health services, Disability and Community Services Commissioner
Date of Submission: 27 February 2017