Submission 131 — One Door Mental Health — Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability | External submission

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One Door Carers

Submission to the Disability Royal Commission

Key Areas:

Disability Provider Organizations The corporatization of disability support services has led to a situation where there are companies who employ effective sales people who make the company sound better than they are. Then when the customer starts with the company, they find that their staff are poorly trained, have little experience and/or are poorly treated by the company. The following areas of concern were highlighted by the group:

Accountability. There appears to be no transparency regarding fees charged, e.g. how much the provider organization allocates for transport costs or service costs, what the financial breakdown is for each of the services and charges. Two of the One Door Carers reported that when they questioned the practices of the company, asked to see their policy documents or questioned invoices, they were dismissed from the company and forced to find a new provider. Other carers stated that they were reluctant to question or complain about providers or invoices for fear of being dismissed from the provider or a reduction in the quality of care provided to the client. Carers in the group suggested that Providers should be asked to provide a monthly itemized account, showing how the money in a person’s NDIS package has been spent. One carer stated that she was unaware that the provider was charging a significant amount to photocopy and to read emails. Another carer stated that she has no idea how the $369 000 package for her son’s SIL has been allocated and spent.

Coordinator of supports. Carers raised concerns about the potential conflict of interest when the coordinator of supports, who is making the assessment and applying to the NDIS for a plan, is employed by the same agency that is providing the services.

There is a significant power imbalance between providers and customers and their families.

Training of Support Workers. There appears to be no consistency in the level of training for support workers. For example, some support workers have not completed the basic Certificate 111 in Disability Services. Consumers are not made aware of the level of training their support workers have completed. One Door Carers suggested the following: ✓ Support workers should have current First Aid training - some don’t

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✓ Support workers who work with people living with a mental health disability should be trained in mental health first aid. At the very least, should be given advice on what to do and who to contact if a mental health emergency occurs, there needs to be a plan for such emergencies, specific to the client and in consultation with the client and their family, where appropriate. ✓ Support workers should be told what the client’s diagnosis is and how that impacts on them. Some disability support service organizations do not want the workers to know what the diagnosis is. For example, support workers who work with clients with an Autism Spectrum Disorder (ASD) diagnosis need to know what the client’s triggers are, such as touch, loud noises etc. ✓ In addition, a client with ASD may have difficulty coping with a replacement worker if their regular worker is sick. Nevertheless, providers will still charge the client for the service if provided by a replacement worker, even if the client chooses not to engage the replacement worker. ✓ Workers need to be trained and informed about safety issues, for example, a support worker of a different gender to the client can be put in compromising situations when providing assistance with showering etc. ✓ Next of kin carers, who know and understand the client better than anyone else, are often not consulted about the specific issues the client has, or their advice is ignored. This can lead to an escalation of a situation which could have been avoided with better management. An example of this is a situation where a support worker called for police when the client mentioned suicidal thoughts. The mother of the client was in the house at the time and, had she been consulted, could have easily de-escalated the situation. ✓ Disability providers don’t seem to allocate funds for staff training and development. ✓ The purpose of support workers should be to support clients to be as independent as their disability will allow. Sometimes this means challenging the client, or instilling confidence in the client, rather than doing things for them which they can already do. Some support workers seem to lack the confidence or ability to supportively challenge the client. At times this means the only service they provide is to more or less baby sit them, rather than actively support them in achieving the goal of being more self-reliant and independent. ✓ In some provider organizations there is a very high turnover of staff. One carer reported that 40 staff members left within 3 months. This is very challenging for clients with mental health disabilities in particular. ✓ Some support workers are fantastic - they listen to the next of kin carers, they are respectful of the client and take the time to understand their needs, they take their role seriously, they understand their client and are willing to supportively challenge them. A good support worker can often help the client in a way that that next of kin carer can’t, purely because of the relationship. For example, often the next of kin carer is a parent and the client may reject suggestions made by the parent, just because it is their parent, but will listen to the same suggestion given by a respectful, understanding support worker.

Treatment of Family and Carers. Even though family carers know and care about their loved ones who have a mental health disability, often they are not consulted or their opinions are disregarded by the service providers. One carer,

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who had significant concerns about the attitude and conduct of a support worker, was told by the provider that they take their instructions from the client, not family members.

NDIS application and assessments The following issues were raised by One Door carers:

Carers reported that assessment reports are frequently sent directly to the NDIS without the families checking them. They report that when they do have the opportunity to check them, they frequently have errors that can impact on the package the client receives. This raises concerns for those clients who don’t have supportive families willing to ask to check the reports. It also means that carers, already busy and stressed in their role of caring for a family member with a mental health disability, don’t feel they can trust the assessment process and feel they need to be checking everything.
It’s not only the assessment reports that carers feel they need to check on. It’s the assessments, the reports, the implementation of plans, everything. One carer stated “You have to be onto them all the time because so many errors are made. I feel like I’m always having to chase something up and the time and mental stress is huge. I feel like I can’t trust people to do their job. You can’t afford to let your guard down”.
Assessment requires a medical doctor who understands the language
New reports/assessments are required every 6-12 months, even when the diagnosis does not suggest that anything will change. A significant amount of NDIS funding goes to these assessments, instead of services. These assessments take a long time to complete and it’s a stressful time for the client and their families because there’s so much at stake. It also means that it’s difficult to plan ahead, when you can only rely on the funding for 6-12 months.
During assessment the client often has no supports, meanwhile their mental health is deteriorating.
Assessments are frequently carried out by someone who doesn’t know the client, who does not know their history. One carer reported that the psychiatrist who had been consulting with her son for 13 years did not do the psychiatric assessment. The NDIS coordinator chose a psychiatrist who had not met him prior to completing the assessment. “So much information is lost if the assessor doesn’t have a long-term understanding of the client and his functionality. Sometimes the client doesn’t even understand the questions asked”.
Carers described the experience of having NDIS plans determined without any consultation with the client or the family carer. For example, one carer reported that the complex needs coordinator from the NDIS made her report without ever meeting the client or his family
There is no flexibility offered in NDIS funding plans, such that if the money allocated for one service is not used, it can’t be allocated to a different service. For example, one carer stated that her son’s NDIS plan included funding to see a psychologist, however, he refused to go. This funding could not be used for other services that he was using and that were useful for him, even when the funding

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for those services was not sufficient to cover the whole time frame of the plan. Another carer stated that her son was allocated funding to assist him in finding a job. However, the nine month wait for him to be settled into SIL was so stressful that it meant he could not use this funding (because he needed to secure housing before he could consider getting a job) and it could potentially be taken from his plan in the next funding cycle if he doesn’t use it.

The whole process of applying for NDIS is difficult, time-consuming and incredibly stressful. The process takes too long and is too slow, particularly for urgent situations such as homelessness.
The complaints process is even more stressful and slow. One carer reported that she waited seven months for a response, only to then find out that they needed more information, which she could have supplied if she had been informed.

Supported Independent Living (SIL) Houses The purpose of Supported Independent Living is to build the capacity of clients, to be able to live more independently. The reality does not always look like that. It takes a committed team to encourage clients to work towards their personal independence goals, in a supportive way. These concerns were highlighted:

Over servicing - provider companies push for more services than required in their assessments in order to get more money
Some carers questioned whether their family member was in a better situation, living in SIL, because they seemed to have less access to services than they did when living at home
Massive undersupply of SIL units. One carer reported that 9 months after approval has been given for her son to move to a SIL, he is still waiting.
Safety issues - concerns were raised about safety for support workers and other residents when a resident is unwell and potentially unsafe with their mental illness
Carers requested a transparent and safe process for complaints and enquiries that would not impact on care for the client
SIL providers often set up SIL houses in cheaper areas, away from family and supports, making it difficult for families to visit frequently.
One carer reported that her son had five SIL plans prepared for him in 2 years. He was considered too high a risk for workers and so was abandoned by the services, despite the fact that she had given the service details of what his needs were and was assured they could provide support. She stated that poor training of support workers was a significant issue in his case. The impact of so much change and uncertainty was significant on his mental health and on hers.

Mental Health Hospital Units - private hospital and public hospital units

Private hospital MH units don’t deal with crisis care.
One carer described a significant difference in the level of care between a public hospital and a private hospital. In the public hospital, the client with a mental

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health disability had someone from the mental health unit check on them every day whilst in a hospital ward following a motor vehicle accident. By contrast, when the client was transferred to a ward in a private hospital (which also had a mental health unit), there was no mental health support provided. In fact, it seemed clear that the staff were not trained in mental health first aid and were having difficulty coping with the client’s mental health disability.

Several carers described the challenges in public hospital mental health units when undergoing a diagnosis procedure - the client having to go through the same information with a different person each time, re-triggering their symptoms each time; the diagnostic process takes a long time (up to 10 years for one client to receive the correct diagnosis).
Once diagnosis is finally achieved and recommendations for care are given, then there is a long wait time for services such as counselling, psychology, psychiatric support, drug and alcohol addiction services. This can be very difficult for the client and the family, who, after the long and challenging process of diagnosis, are left to their own resources whilst they wait for support. This can be very triggering for the client with a mental health disability. By contrast, a person who experiences a spinal injury for example, is admitted straight away and rehabilitation commences immediately.
This issue with insufficient services is particularly significant in rural areas. Some carers have moved their families from rural areas in order to access better services.
Carers described the experience of being told that the client does not reach the criteria for a diagnosis and therefore are offered no support, even though their lived experience is very challenging
Carers shared the experience of not being consulted or their advice being ignored by hospital staff
Many carers found the whole experience of mental health hospital wards (both for them and the client) to be of little value, that the client was heavily dosed with medications during their stay and minimal other interventions were offered, then the client is released into the care of the family again with little or no follow-up support.

The Mental Health Act

The Act is intended to support and protect the needs of the client. In actual fact, the Act supports the system.

The need for National Co-ordination of services

Inconsistency of care in different regions, in particular, access to supports is limited in rural regions
One carer described a significantly traumatic experience when their adult child was diagnosed in Victoria and then came home to NSW.

Particular issues when the client with mental health disability is over 18

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A person with a mental health disability has impaired capacity to understand a lot in their world. When they turn 18, they do not necessarily have the mental capacity of an 18-year-old. This means that they are at high risk of exploitation, abuse, suicide and violence, in the same way as a child needs protection from these things. However, despite this, once a person with a mental disability turns 18, society treats them as adults. This means:
The person with mental health disability can use their signature to sign up for mobile phone plans, credit cards, afterpay etc. which they cannot afford to pay, when they don’t have the capacity to think long-term. This can cause a great financial burden on the family and the family are unable to stop this from occurring and re-occurring. If they attempt to intervene, they are told that the person is over 18 and therefore can make these decisions for themselves.
One carer said her daughter was at high risk of suicide and domestic violence when she moved in with a boyfriend who was unsafe. When she attempted to get help from the police, she was told that her daughter was 18 and could make these decisions for herself. When she attempted to explain her daughter’s limited capacity to understand the nuances of unsafe relationships or to pick up on social cues of danger or threat, she was told by the police that she was an anxious mother, and that she was the one who was crazy and needed help. She was left feeling helpless and alone and very concerned for her daughter’s safety but could do nothing to protect her. All she could do was wait until the relationship broke down and then pick up the pieces, in the meantime, hoping that her daughter would survive - physically and emotionally.
The privacy act prevents family members from finding out a lot of information from practitioners ( such as the results of diagnoses), once the client turns 18. For parents who have been caring for their child with mental health disability all their lives and are invested in their welfare, they feel suddenly shut out and unable to access information that has been valuable to them in the past. Parents feel cast aside, overnight.
If abuse or exploitation occurs, the family are not able to report this once the client turns 18. It must be reported by the client, even when they may not have the capacity to do so. Clients are at risk of the abuse/exploitation being trivialized or even being ridiculed for reporting it, because of their limited capacity to report it.

• One carer reported that her son’s provider at the time, pushed her

son towards Public Guardianship against his will and against the will of his family. This has significantly impacted on his care since, because it slows up access to everything. No supports or interventions can be put into place without the approval of the public guardian. This occurred despite the fact that things were working well prior to the public guardianship being put into place. This has caused significant delays and frustration for the whole family.

The diagnostic process

There is inconsistency with diagnoses, depending on the practitioner.
It takes years for a correct diagnosis of mental health disability to occur, and misdiagnosis is common.

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The Terminology used for mental health pathologizes everything - every diagnosis is a “disorder”, which assumes the negative, without acknowledging the positive in a person, e.g. ASD. Replacing the word “disorder” with “behavior” would change the emphasis into a neutral, rather than negative one.
Sometimes a diagnosis is unhelpful, it can act as a disincentive.

Employment

Employment opportunities for people with mental health disability appear to be difficult to find
Employment agencies and workplaces don’t necessarily know how to support the needs of a person with mental health disability

How did COVID impact on our lives?

One carer stated that her son’s SIL provider charged an extra “Covid” bill of $6000 at the same time as they were collecting extra Government payments. When they challenged the invoice the $6000 was waived, but only after they challenged the invoice.
One carer stated that her son was incarcerated during a Covid lockdown, which meant that he was in isolation for 3 months with no contact with his family. This had a significant impact on his mental health.
Covid lockdowns prevented support workers from attending, stopped all activities, community hubs were closed, families couldn’t visit those in SI Ls. This isolation has had a significant impact on the mental health of all involved, including families, and has been a major setback in terms of NDIS life goals.
SIL houses had staff shortages and still do. This means that sometimes they are still missing out on activities
The vaccination rollout in SI Ls was very disorganized and disruptive in NSW, apparently the Queensland rollout operated well in comparison.
We were promised a disability pack for RAT testing but it wasn’t available.

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 Positive Interventions
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Carers reported they found that the following interventions are helpful:

Peer support groups, e.g. Flourish, TAFE peer support and CDAH (Community

Disability Alliance Hunter)

Peer groups, community access and group activities
Therapy, when it is working towards self-awareness, awareness of diagnosis, self-acceptance and strategies to manage diagnosis
Case conferencing, when families, psychiatrists, psychologists, medical doctors and the support providers work together as a team

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Employment provides people living with mental health disability a sense of purpose and a connection with community
Support workers who are committed and capable of supporting the client’s long term goals for independence and quality of life

What is it like to be the family carer of a person with a mental health disability?

You are the one who cares, loves, advocates, keeps the records, co-ordinates services and professionals, knows the entire life history, can provide continuity of care, yet too often you are left out of decision making and not listened to. In fact, you are told you are being too aggressive when you have to advocate for the rights of your child, that you are confrontational when simply asking for information. It is painful to not be heard, to never be invited to give an opinion on your own child’s behalf, and to have no rights to important information.
To say this is a full-time job is an understatement. The number of hours it takes to support, advocate, complete paperwork, follow-up on paperwork, correct errors etc. is extraordinary.
Who can do all of this when I am too old or after I die?
“It’s hard enough having a child with a mental health disability, let alone the extra stress that comes from having to deal with mental health units, the NDIS, providers that make it difficult and even confrontational for family members to be involved”
“The main stress I feel doesn’t come from my son/daughter, although that’s stressful enough. It comes from a system that doesn’t listen to me, that makes mistakes I have to constantly correct and check on, and that I feel I have to fight against in order for my child’s needs to be heard and met.”
We are the ones who have to pick up the pieces when the wheels fall off- when our children make poor choices, when the provider agency falls short, when practitioners don’t do their jobs properly. We are the ones who have to be there to deal with it all.
It takes years to even acknowledge that you are a carer - years of massive isolation, misdiagnosis and shame. This has a significant impact on your health and your relationships.
There is a significant impact on the siblings of people with mental health disability - neglect, sometimes physical abuse, isolation and shame.

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Suggestions for improvement

Disability Providers should be required to provide clients a monthly itemized account, showing how the money in their NDIS package has been spent.
The NDIS should consider the possible conflict of interest when a coordinator of supports is employed by the provider of supports.
Disability Providers should be required to provide training in mental health first aide, mental health risk mitigation and in general first aide for their staff. Specialist training for support workers employed to support people with an ASD diagnosis should also be provided. There should also be the provision for ongoing staff training to develop support workers’ capacity to encourage and challenge clients in order to develop their capacity, consistent with their goals.
Behavior Support Practitioners should be providing specific training to the participant’s support workers. Sometimes this happens but because it is not regulated it doesn’t always occur.
Disability Providers should be required to develop a safety plan for clients, in collaboration with the family and therapists.
NDIS assessments - do they need to be so frequent and comprehensive when the diagnosis doesn’t suggest that much will change from year to year?
NDIS assessments and reports should be completed in consultation with the family /primary carer and with the practitioners who know the client.
Supported Independent Living (SIL) packages need to be more closely regulated to ensure that individual goals of independence are being met, safety of workers and clients is ensured, clients aren’t being over-serviced or under-serviced and there is accountability and transparency.
More SILs are required to meet the need.
More services need to be made available in rural areas
When a person reaches the age of 18 chronologically but not mentally, this needs to be taken into consideration in terms of their rights and responsibilities and the role of family carers.
People with mental health disability require more employment opportunities with organizations who understand and can cater for their individual needs