Submission 20 — Anglicare SA — Mental Health Services and NDIS | External submission

Received 1/11/18 020

Development Committee: Mental

Health Services and the NDIS

October 2018

Peter Sandeman

Chief Executive Officer

AnglicareSA

159 Port Road

Hindmarsh SA

Telephone: (08) 8305 9229 Email: psandeman@anglicaresa.com.au

Executive Summary

AnglicareSA supports approximately 62,000 South Australians annually, including more than 1000 children and adults with physical and/or intellectual disabilities. Many of our services are developed through co-design and collaboration with customers and their primary carer/s, ensuring customer experience and voice is embedded in our services.

AnglicareSA supports the customer driven approach that the National Disability Insurance Scheme (NDIS) brings, and have observed an improvement in the lives of many customers through their involvement in the scheme during the five years of delivering services as an NDIS registered provider. However, with NDIS expected to support only 9% of people experiencing a severe mental illness, AnglicareSA is deeply concerned about the limitations of the Scheme in meeting the needs of this cohort.

AnglicareSA has observed a significant negative impact on mental health services and the lives of customers and carers affected by mental illness trying to access supports. Many have been found ineligible for NDIS funding, and the withdrawal of funding from community based mental health services will compound current and future service deficit.

AnglicareSA commends the Government for its leadership in initiating this Inquiry. AnglicareSA’s submission draws on our extensive experience delivering the two services raised in this Inquiry – Personal Helpers and Mentors (PHaMs) in the Playford and Gawler Belt regions and the Mental Health Respite: Carer Support (MHR:CS) service which spans metropolitan Adelaide. The submission also reflects our broader mental health experience in supporting residents living

within Supported Residential Facilities, Suicide Prevention and Exceptional Needs

Accommodation and outreach, which supports some of the most vulnerable individuals with multiple complexities and risk factors living in our communities.

Our submission draws heavily on the experience of people living with all ranges of mental illness and their carers, and highlights the impact which the current policy and operational shift is having on individuals, families, Carers, the broader community and service system both now and into the future.

The gap between the Federal Government’s predicted and realised percentages of mental health clients receiving NDIS support

Of the estimated 690,000 Australians living with severe mental illness requiring complex and multiagency responses, only 9%1 will receive NDIS funding – the remaining 91% will be reliant on non-NDIS funded community mental health services (SANE Australia 2018). This excludes the approximately 3 million Australians living with mild to moderate mental health issues - many of these have maintained their level of mental wellbeing through engagement in community based services such as PHaMs and MHR:CS, through assistance with day to day living, mentoring and case management.

To-date, these block-funded services have demonstrated effectiveness in meeting customer outcomes, including reducing:  An individual’s chance of becoming unwell;  Reliance on and need for clinical interventions including lengthy and costly hospital admissions;  Reliance on crisis or emergency service support;  Social isolation.

A key program strength is the ease and immediacy of accessing supports, with referrals often accepted immediately upon seeking support. There is no need for customers to present with a clinical diagnosis, impairment or lifelong functional incapacity, which in turn does not prohibit or deter people from seeking help.

Individuals are now reporting experiencing a decline in their mental wellness and an increase in symptoms due to the struggle in proving their need for support funding, ascertaining supports and navigating the complex application, review and appeal process. This has led to customers fearing losing supports as existing services face closure and many customers are having their NDIS applications rejected. For many customers living with complex mental illness, the weekly support visit or group activity accessed via community based mental health services, is the only opportunity for them to feel safe enough to leave their home, do the shopping, socialise or learn new skills to assist them with independent living and maintaining wellness.

If the South Australian Government transitions all current block funded mental health and disability funding to NDIS by July 2019 (as intended), AnglicareSA’s experience to date is that there will be a significant spike in presentations to emergency services, and increased isolation and deterioration of the health and wellbeing of individuals and families receiving current services. Furthermore, many individuals have not yet had the opportunity to obtain diagnosis, apply or review an ineligible NDIS decision, and will lose their existing mental health supports. This is compounded by delayed NDIS timeframes, with many customers still awaiting an outcome of their NDIS application, some for over six months. In the current environment, there are no alternative services to refer this cohort to.

1 NDIS benchmark is 62,000 packages of support by full rollout in June 2019 (NDIA, 2018)

The reduction in funding to the Personal Helpers and Mentors program and Mental Health Respite Carer Support program and the impact this will have on people with mental illness

AnglicareSA is already observing a deep impact on the individual, families, carers, community and clinical, judicial, family and welfare services in South Australia, due to the scaling back of funding (and future defunding) of PHaMs and MHR:CS. Specifically:

2.1. PHaMs

 NDIS Eligibility: AnglicareSA’s experience to-date is that only 12% of PHaMs customers are receiving NDIS funding. PHaMs is classified as 100% in-scope for NDIS, however, a customer audit of our PHaMs services indicates that the clinical ‘psychotic’ disorders considered in-scope for NDIS such as schizophrenia, bipolar and schizo affective disorder account for approximately 30% of participant’s diagnosis. Severe Depression, PTSD and anxiety, often experienced together, account for nearly 70% of customer’s diagnosis, and compounded by factors such as medication, social isolation, social phobia’s and poor independent living skills – this cohort will not receive NDIS funding, and in the current environment, there are no alternative services to refer to.

 Impact of Funding Reduction: PHaMs participants come from all walks of life and seek support to manage day to day responsibilities, as well as strategies to assist in understanding and recovering from mental ill health. These supports may include linking in to family services, financial supports, housing, employment, education, developing life-skills and re-engaging in community activities. A pertinent aspect of the service is to motivate the participant to actively participate in their recovery often the most difficult challenge to overcome. The service also offers an early intervention approach for people who have not engaged clinical supports, or have a formal diagnosis of mental health, again reducing reliance on mainstream or emergency services.

 The defunding of PHaMs has been known for several years, providing adequate time and funding for service providers to transition customers and the PHaMs service to an NDIS oriented model. The primary issue, however, remains that only 30% of PHaMs customers are likely to be eligible for NDIS funding, and even fewer (12%) are successful in receiving funding, leaving a very significant funding and service gap. Investment in community-based mental health services are essential to address this shortcoming, and ensure people experiencing mental illness have access to future services. Without this, PHaMs customers and their families will experience significant challenges, and likely deterioration of mental and physical health and wellbeing.

CASE STUDY: Sarah, a 38 year old PHaMs customer with bi-polar effective disorder, major depression and anxiety – this is her NDIS experience.

Sarah* is 38 years old and has a diagnosis of bipolar effective disorder, major depression and anxiety. Sarah was also recently diagnosed with diabetes, and suffers from a bulging disk, causing excruciating pain and limiting her physical ability to do many tasks around the home.

Sarah self-referred to AnglicareSA’s PHaMs program in July 2016, and engages in the following services and supports:

 Support to build confidence and reduce social anxiety  Support to reduce social isolation  Support with managing diet, health, wellbeing  Support with study and volunteering  Advocacy with other agencies  Mentoring around mental health issues  Increased knowledge and awareness of mental illness  Strategies to deal with the challenging days

Sarah experiences many negative symptoms of her mental illness – some are a direct result of requiring anti psychotic/mood stabilising medications. Extensive attempts with various medication combinations to try and stabilise/minimise Sarah’s symptoms have been a great cause of distress for her. She has experienced major hair loss, a severe body rash which has resulted in scaring, learning difficulties (simple tasks), poor concentration and greatly reduced memory. Sarah has worked together with her psychiatrist to achieve optimal levels of medication to keep her stable and free from episodes of mania and major depressive symptoms. Further to this, the impact of her illness on her life is as follows: sleeping excessively, constant fatigue, insomnia, sleep apnoea, weight gain, diabetes, difficulty maintaining her home and garden due to inability to organise these tasks and constant back pain, poor personal hygiene, parenting difficulties (single parent of 3 children), inability to work or study, social isolation and poor relationships. Sarah has extremely low self-esteem and lives with chronic feelings of hopelessness. Sarah describes at times feeling completely overwhelmed by the simplest daily tasks, which in turn triggers more feelings of hopelessness, frustration, shame, guilt and fear. Sarah has hopes of becoming empowered so she can gain a level of functioning, confidence and independence which will improve her quality of life as well as her children’s.

Sarah was supported to apply for NDIS in July 2017 and attached to her application recent medical evidence to support her Mental Health/Disability diagnosis including:

 Support/confirmation letter from her Psychiatrist  Support/confirmation letter from her Clinical Psychologist  Supporting evidence form from her GP  ResSleep

Sarah was rejected by NDIS stating she had not met eligibility requirements of Section 24(1)(b), Section 24(1)(e), Section 25 (1)(a) or Section 25(3). AnglicareSA supported Sarah to lodge an appeal, including further evidence of ”permanency”, so she sought a letter of support from her treating psychiatrist for the review.

Despite the psychiatrist acknowledging and confirming Sarah’s diagnosis of Bipolar Disorder, Depression and severe anxiety, she refused to confirm that it was a permanent or a life-long disability, as this did not align with the principles of recovery within psychiatry, advising: “I will not alter my report which is accurate. Mentall illness is not seen as permanent and life long. AnglicareSA’s PHaMs team is still supporting Sarah. We helped Sarah lodge a review to NDIA in April 2018, and Sarah is still awaiting a decision. Sarah’s mental health has declined due to the additional worry of services ceasing and her continued ineligibility for funding through NDIS. Sarah states the toll of the constant pressure is affecting her through reoccurring depressive thoughts. Sarah will continue to be supported through PHaMs Continuity of Support funding until 30th June 2019.

Between July 2017 and July 2018, AnglicareSA’s PHaMs service has experienced a low 12% acceptance rate of NDIS applicants with many customers having waited over 12 months for a decision. Most concerning is that AnglicareSA has also experienced customers self- exiting or becoming disengaged with the service as its primary focus shifted in line with operational guidelines, from providing psychosocial services focused on customer individual goals and outcomes; to supporting the NDIS application process. Support workers struggle with helping customers understand (contrary to the Recovery Framework) the need to provide evidence of a life long disability and organising supporting documentation to evidence functional incapacity. An average of 12 – 24 hours is usually needed to support a customer apply for and access the NDIS on average, including making appointments, accessing medical records, completing applications, reviews, appeals and compiling support documentation. The absence of alternative community based mental health services to support individuals will create immense pressure on upstream tertiary services.

2.2. MENTAL HEALTH RESPITE: CARER SUPPORT (MHR:CS)

AnglicareSA’s MHR:CS program supports over 400 carers and 290 care recipients each year across metropolitan Adelaide. Delivering the service since 2008, we redesigned the service with carers in 2014 in response to AnglicareSA’s Carer Evaluation which highlighted an unmet need and desire of carers to participate in activities that would help them reestablish communication skills, build confidence, friendships, interests and engagement in their local community. The funding parameters of MHR:CS provided the flexibility to redesign the service to include carer groups, events and short courses that focused on wellbeing, resilience, skill building, social inclusion and recreational interests of carer. Furthermore, a ‘dual support model was developed to enable fulltime carers to reengage in the community and participate in activities, whilst knowing their loved one is also engaged in meaningful activities.

Events such as the Carer Inspirational dinners ensure carers of high and complex adults are able to attend as individual respite is offered at these events for the adult they care for. These events now see up to 100 Carers gathering together, supporting each other as peers through their caring journey, and receiving information and motivation through speakers presenting during the events. Through nurturing the needs of both carers and care recipients together, MHR:CS has been able to wrap services around families in a way that ensures carers feel supported, safe and able to participate, and most importantly, able to sustain their caring role.

However, the reduction of funding for the MHR program and minimal support being made available to carers through the introduction of the NDIS scheme means that the ongoing viability of this critical support and learning opportunity for carers is unlikely.

Regarding the impact of defunding, an AnglicareSA MHRCS focus group comments include:

“I would have no support and be house bound”
“there would be higher suicide rates”
“I would not have any transport”
“nowhere to meet people or engage in community”
“more begging”
“I am getting old and tired. I have been a carer all my life, in one way or another and live in poverty because of it”
“It would impact my own health” 6

Maureen Brown, South Australian carer of the Year in 2015 recently also sent a letter to AnglicareSA on 8th September 2018, relaying the personal impact the NDIS is having on her and her family (see Appendix A).

In addition to direct supports, block funded community mental health services such as PHaMs and MHRCS, also play a vital role at community and societal levels. These services actively:

 Reduce stigma and increase community participation through the provision of inclusive events, workshops and activities, the promotion of mental wellness for all South Australians through activities and events, the provision of information helps to reduce the communities negative attitudes and behaviour towards people living with or caring for someone with mental illness and promotes acceptance and lessens disadvantage.  Increase support networks through the ongoing collaboration with other mental health services and peak bodies, PHaMs and MHRCS ensure customers and the public are aware of other services available. Staff meet with other agencies frequently to ensure their knowledge of other services is relevant and they have the ability to share this with customers to increase personal support networks.  Target hard to reach cohorts by focusing on the engagement of Aboriginal, CALD, LGBTI and young or older carers, ensures that the services actively seek to support so that they are able to receive supports required. Block funding enables services to tailor supports to meet the individual needs of the customer.  Provide supports to all persons identifying as having a mental illness or a caring role – Many customers have an intense fear of clinical services, so having eligibility criteria as broad as this enables those customers are able to access services without having to prove their need. Customers across the scale of complexity are able to access services as are others not eligible for NDIS such as refugees who experience acute mental ill health and are hard to reach.

One of the many strengths of the current services is that dual respite and social activities have an embedded focus on education and peer learning and support - plain English (less clinical) marketing language and service terminology also helps build understanding, and foster confidence and trust.

In 2016, AnglicareSA’s evaluation of the MHR:CS service demonstrated that carers valued the peer support and carer support activities provided. Carer feedback including:

“they (MHRCS activities) help me feel normal again”
“I feel recharged and ready for the next day”
“I couldn’t live without it”
“I need to know there is a real world out there”
“it helps me build up the strength to face it all again”, and,
“I go from being worthless, to being somebody”. From AnglicareSA’s experience, the impact of reduced funding will include:
Individuals experiencing an increased escalation to mental health crisis, resulting in the need for clinical intervention
Increase in presentation to emergency departments due to self harm, suicide attempts, violence
Increased SAPOL involvement due to domestic violence, behaviours of concern
Increased loss of maintaining housing, homelessness 7

Increased involvement of FamiliesSA
Increase in alcohol and other drugs use
Medication non compliance
Service withdrawal and social isolation
Increase in customer complaints
Carers disengaging from support networks
Cessation of Carer Events (currently supported over 400 Carers during 2018)
Significant customer and carer mental health decline
A shift from high and complex to severe mental illness
Care recipients increased dependence on Carers
Carers loss of social interaction, friendships, respite opportunities
Reduction of qualified mental health staff to support complex customers
Loss of services for many customers currently utilising to maintain wellness

THE ONGOING REQUIREMENTS FOR BLOCK FUNDED MENTAL HEALTH

SERVICES PROVIDED BY THE STATE GOVERNMENT AFTER THE NDIS

TRANSITION

There is a clear need for ongoing block funding of mental health services after the NDIS transition, particularly with the NDIS supporting only 9% of Australian’s experiencing a severe mental illness. Failure to make this investment will result in escalation of individual behaviours and presentations to emergency and mainstream services, as well as the broader impact on families and communities through a loss of community based support and educational services.

Community based mental health services are more affordable, effective and provide the added benefit of keeping people connected to their communities, their support networks and working with them to ‘self manage’ their fluctuating health needs.

AnglicareSA believes the financial and operational sustainability of both the NDIS and Australia’s health system, hinges on continuing to fund evidence-based, community driven and embedded mental health services such as PHaMs and MHR:CS. To achieve this, AnglicareSA suggests that the State Government form a joint working group of Government and non-Government providers to offer strategic advice and direction regarding the level, type and volume of services needed in South Australia.

Block funding will ensure that people who don’t identify as having a mental illness, including those too fearful of clinical services, or not wishing to obtain a label of diagnoses of a mental illness can continue accessing supports. Block funding also ensures people have ongoing access to transport and that professional qualifications and skills are prioritised, including adequate professional development, supervision, training etc.

NDIS funding does not represent the skill level required to provide the support for people with complex mental health issues and comorbidities. NDIS funding focusses on the engagement of staff that provide personal care and limited social inclusion activities, and the funding is not adequate to engage staff with the experience and qualifications necessary to offer meaningful and psychosocial support to clients with high

and complex mental health needs. These include staff who are appropriately skilled to respond to a range of behaviours that often stem from vicarious trauma and clinically diagnosed mental illness. This funding issues also escalates the risk of staff experiencing compassion fatigue and burnout which can occur when staff are not fully educated in addressing the needs of participants discussing challenges such as suicide attempts, self harm, thoughts of harm to others, managing inappropriate targeted behaviour, repetitive and anti social behaviour, not understanding personal etiquette and developing appropriate social cues.

Staff working with customers experiencing severe mental illness are often uncertain of the fluctuating circumstances on arrival. There are many determinants that the worker must be aware of for their own safety including customers compliance with medication, use of non prescribed medication, illegal drugs and alcohol, weapons (paranoia with complex customers is common) as these can all impact the working relationship and success of support (outcomes of support). From AnglicareSA’s experience, people living with mental illness are also often struggling on welfare. Disconnection of utilities, malnutrition and lack of personal hygiene and welfare are primary concerns to address by the mental health support worker, in essence, reinforcing the important value of a case management approach.

Block funding is critical to ensure the ongoing support for customers deemed ineligible for the NDIS, in a similar community based mental health service such as PHaMs.

There is also a need to continue to fund carer social and educational opportunities for carers to ensure the continued welfare of carers and outcomes currently being achieved through the unique MHRCS service.

THE EFFECTS ON SOUTH AUSTRALIANS WITH MENTAL HEALTH ISSUES

WHO ARE DEEMED INELIGIBLE TO RECEIVE NDIS FUNDING

The impact on individuals, and the entire health and social services system will be significant, particularly if community based mental health services are also defunded.

Community based mental health services work holistically and inclusively with individuals and their support networks, strengthening and supporting them together increases the resilience and capability for them to function better and more sustainably over the longer term. Without such services, acute presentations to tertiary services, such as emergency departments, homeless shelters and prisons, where people with mental illness are already over-represented will increase.

The value of services such as MHRCS, and their ability to change lives, is illustrated in the following case study:

Jane*, who has been diagnosed with paranoid schizophrenia, depression and severe anxiety, lives in the family home with her 64 year old mother Mary*, her primary carer, and father Ron*, who has a significant physical disability. Mary contacted AnglicareSA in significant personal crisis in 2010, in a desperate plea for help. Mary’s extended family had turned their backs on her many years ago as they didn’t understand her situation and she had essentially been housebound in her carer role for over 18 years. Mary had limited involvement in the community other than going to the shopping centre for groceries at night whilst her husband and daughter were sleeping. Mary discussed her feelings of worthlessness and fatigue. Mary contemplated whether her family appreciated her support as she fielded verbal and emotional abuse daily and wondered how long she was able to

endure this day in day out. Mary discussed her ongoing suicidal thoughts as she believed the system would take over the care of her family, if she was no longer able.

Jane* is 32 years old. She had not left the home since she returned from high school one day in 1999, after being bullied by classmates and constant feelings people were following her. Jane experienced hearing voices which became louder and more intense once she opened the front door and had refused to go near the door for many years. Jane spent her time watching Netflix and drawing comics. Jane played the Xbox and talked to people online daily. Jane was significantly overweight and found it difficult to get along with her parents as she felt they didn’t understand her and asked too many questions.

AnglicareSA through DSS funding of the Mental Health Respite program, was able to implement both immediate and ongoing holistic supports that met both Mary and Jane’s needs. A staff member was able to provide immediate counselling assistance over the phone to Mary de-escalating her heightened state of distress and reassuring her that assistance was available. The staff member organised a worker to attend the home the following day to discuss the support needs of Mary and Jane, and to plan initial goals which would pave the way for a brighter future for the family. Respite support began that week with a worker attending the home to build rapport with Jane whilst Mary was able to spend time cleaning or supporting Ron. Over time, Jane began to increasingly trust the worker and agreed to slowly tackle her anxiety relating to leaving the home. At first the worker talked to Jane through a crack in the door, and then as Jane became familiar with this, the worker sat in the patio and talked to Jane whilst she held the door open. 4 months later, Jane held the worker’s arm and walked behind her to the letterbox collecting the mail for the first time since high school. Jane and her worker had their first coffee at the local shopping centre 6 and a half months after support began. Jane then began attending the AnglicareSA Mental Health Respite day community engagement groups once a week which gave her mother a day to herself. Almost a year after joining the group, Jane announced that she was enrolling in TAFE and wanted to complete a certificate. Jane is currently working 4 days a week now, has her driver’s license and takes her mother to the coffee shop she first went with the worker regularly. Jane lives in her own unit now and comes in to visit AnglicareSA every now and then to give an update on where she is at.

Mary was linked in to counselling immediately and encouraged to contact the program whenever she felt the need for extra support or just an ear to listen. Initially two support workers attended the home to provide support both to Jane and Mary although, as Jane’s dependence on her mother decreased Mary was able to engage in the Carer programs also. Mary attended the I am..Caring 6 week wellbeing program, the self-defence classes which helped to boost her confidence and several other carer events where she cemented friendships and was able to reduce her social isolation.

Mary and Jane’s level of support increased and decreased over several years however, they always knew that they had an ongoing, trusting relationship with the program. They were both able to discuss support needs and choose the intensity of their support. They continue to attend events and educational programs where they have built connections and feel able to discuss their journey with others who are just beginning.

*names have been changed for confidentiality

THE SUFFICIENCY OF SERVICES PROVIDED TO PEOPLE WITH MENTAL

ILLNESS WHO ARE ACCEPTED INTO THE NDIS

AnglicareSA’s experience of NDIS Plans for people with mental illness is as follows:

 Inadequate plans;

 Inclusion of services that are inappropriate for the mental health recovery processes, instead often focussed on disability style supports.  Inconsistent NDIS Plans for people with similar diagnoses and support needs.  High rate of plan review requests.  Reviews often take months rather than the stipulated two weeks. The result is people experiencing access to limited and often inappropriate services as stipulated in their NDIS plans, and are referred to mainstream services for supports critical to their health and wellbeing resulting in further waits for support and escalating customer risk.  Anecdotal evidence of an increase in plans for people with psychosocial disabilities including Support Connection rather than Coordination of Support funding. It is unrealistic for services responding to customers with complex mental health support needs to be able to ensure adequate supports are in place and customer skills developed for managing supports in their life can be achieved through support connection.

Case management is needed to support people living with high and complex mental health support needs because they often do not have other family or support networks, or the capacity to fully manage supports and services across their lives themselves. Case Management is not funded through the NDIS.

Transport is not adequately funded through the NDIS, as most customers require the support worker to transport them during visits. Nearly all customers of PHaMs and MHRCS require transport support to engage and participate in reaching their goals. It is not effective or achievable for workers to be utilising public transport to support customers with transport needs during a very time limited visit.

THE EFFECTS ON SOUTH AUSTRALIANS WITH MENTAL HEALTH ISSUES

UNDERTAKING THE APPLICATION PROCESS FOR THE NDIS

The majority of people requiring support with complex needs are finding the application extremely difficult and confusing, for example:

 An AnglicareSA customer was recently rejected for ticking he was not an Australian citizen, this customer is Australian and is now having to submit a review.  Another customer hid his letters under his pots and pans as he has a fear of opening letters and is unable to read.

There are many situations such as this being experienced by PHaMs and MHRCS participants, which are evidence of the challenges people with mental illness are experiencing in the transition.

These examples are reflective of AnglicareSA’s general experience. The cognitive barriers experienced by people with a psychosocial disability, often experienced with social isolation compromises their ability to access NDIS. Primary health networks have a role to play in this by way of referral, however, our experience is that significant time is needed to support people with psychosocial disabilities to understand and engage in the necessary steps to access NDIS. Combined with barriers such as transport, social isolation, anxiety etc, there is a high probability that referrals are not pursued to the extent required to engage many of the target cohort.

In recognition of the complexities involved in accessing the NDIS, and that individuals have different levels of ability to navigate and access resources, AnglicareSA has invested in an NDIS Consumer Advocate Team focused on supporting newly referred (not PHaMs or MHRCS participants) people with additional barriers navigate and access the NDIS. The need for this function and particular focus on people with ‘less formal supports and vulnerabilities’ has been demonstrated in the formal evaluation of the NDIS undertaken by Flinders University’ National Institute of Labour Studies, which found that those experiencing poorer outcomes, are (in particular) “people with disability who (are) unable to effectively advocate for services on their own behalf, including some people with psychosocial disability and/or those people who struggled to manage the new and sometimes complex NDIS processes”.

Appendix A. Letter from Maureen Brown, 8th September 2018.

“I am writing this because I am disillusioned with the situation that exists now for carers since the introduction of the National Disability Scheme rolled out across Australia.

A carer from South Australia went to an Inugural NDIS meeting before it commenced to Canberra with another person from Anglicare, and mentioned about the carer services, what funding would happen for the carers when NDIS comes into fruition throughout Australia. Funding has decreased more and more since NDIS was established.

Funding for NDIS goes to the caree and nothing for the carers since NDIS commenced. Carers will eventually burn out/get major health problems, die, or need a carer themselves.

Most carers I associate with are on the Carers Pension/Carer Allowance, and therefore now since the introduction of NDIS, carers have to pay a fee up to $35.00 to attend a function. This is far too costly for them to participate, and therefore some carers will not be able to financially participate in these social functions.

Carers save the Government more than $64 Billion a year, so this is unfair.

Uniting Care Wesley in their last newsletter mentioned about signs and symptoms of stress and how it affects carers. I will list these below.

Physical

Sleep problems Tightness in chest

Clenched jaw Dizziness

Grinding teeth Sweating

Stomach upsets Breathing too fast

Increased heartrate Tiredness

Agitation

Muscle tension

Emotional

Irritated

Frustrated

Overwhelmed

Hopeless

Apathetic (not caring)

Mental

Poor concentration Slowed thinking Negative thinking

Worrying

Mind racing

Forgetfulness

Difficulty thinking Logically and solving problems

Behavioural

Lack of interest in activities Not doing required activities

Over-working

Many of these symptons relate to myself.

Funding is being taken away from Northern Carers, Anglicare, UCWB, Skylight (previously called MIFSA), BINSA etc. placing them in a precarious situation, as they are wanting to keep supporting carers, knowing very much they need social programs, events, outings, meetings etc. to connect with others carers they relate to, so they don’t become isolated, stressed, or burn out etc.

How do you distinguish between carers that apply for NDIS and get their applications rejected and carers that choose not to be on NDIS. If the person you care for is on NDIS, because of the Mental Health Respite regulations, you are therefore obliged to pay if you as a carer attend a social program or outing. The fee of up to $35.00 now charged by Anglicare to attend a specific function when they happen is unreasonable, and personally feel I am penalised having to find that amount of money to attend, because my son is on NDIS and I am still fully caring for my son. I have been waiting for over 9 months for a Review to get more funding to get some help because of my circumstances having changed now. I can’t pay on single pension for taxi’s daily to travel to my son, and carers events when they happen too. How is it fair that people not on NDIS do not have to pay for social events. It puts extra pressure on the carers that are doing it tough already.

I am 73 years of age now and have been caring for my son who was a Victim of Crime, sustaining massive Frontal Lobe Brain Injury, Frontal Lobe Dementia, Schitzophrenia and Paranoia for 19 ½ years now 7 days a week, with only 4 days off in all that time travelling daily to care for him.

In the last 3 months my circumstances have changed now impacting on my physical health, and I cannot drive now to care for my son daily. Catching taxis to travel daily to him is very costly, leaving me not much money left to live on, being on the single pension. I have tried to find help but to no avail.

People tell me I am a strong lady but after all those years daily travelling to care for my son, I now suffer with isolation, panic attacks, anxiety, high blood pressure, heart powerpatations, depression, had many falls, arthritis, mininiscus tears in both knees, bulging discs in my back, neuroma in feet and peripheral neuropathy, probably contributed to all the stress in my body with long time caring. I sometimes have wished to go to sleep and not wake up as I am overwhelmed with too much to do being on my own, and also full Administrator for my son, but then stop and realise he depends heavily on me for my support daily, and that triggers me to keep going to support him and give him the quality of life he deserves.

Impact on the Family.

Isolated from own immediate family, and brother and sisters. Sacrifically given my life to care for my son – son and daughter taken a grudge against it, despite never neglecting them, which has led to Elder Abuse and caused isolation.

My children had previously stated to me they will not take responsibility to care for my son when I die or am not able to care for him anymore. They have witnessed the stress I have been under as a carer/administrator to my son for a long time, and seen what it has done to my health. My daughter keeps in touch with her brother by phone at times, but my younger son does not keep in contact with him.

Very much depleted. People don’t want to get involved, as they may have to help.

Situation: My son I care for with major brain injury has complex issues with challenging/aggressive behaviour, and is not able since his brain injury to process information. Some people are scared of him when he acts out.

I know to keep going I also need to be supported as a carer, and social events still need to continue to make that happen, to have time out from caring to socialise and replenish to feel like a normal person. I need to get that message across to Governments. I personally have saved them massive amounts of monies caring all those years for my son, and carers need to be supported and continuity of support funding put in place for that, not stopped.

You have to walk in our shoes to fully understand a carer’s life.”