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Jean Tops -  Gippsland Carers Association Inc - Ensuring Sustainable Disability Reform through the NDIS
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Jean Tops - Gippsland Carers Association Inc - Ensuring Sustainable Disability Reform through the NDIS


Jean L Tops, President of Gippsland Carers Association delivered this paper at the 5th Annual National Disability Summit 2014. Examining the theme of “Ensuring Sustainable & Successful Disability …

Jean L Tops, President of Gippsland Carers Association delivered this paper at the 5th Annual National Disability Summit 2014. Examining the theme of “Ensuring Sustainable & Successful Disability Reform through the NDIS”, I am proud to present a diverse program showcasing insights and case studies from individuals across the entire Disability Sector to give a realistic and insightful overview of the NDIS rollout to date, and recommendations for moving forward successfully

For more information, please visit https://www.communitycareconferences.com.au/nationaldisabilitysummit14

Published in Health & Medicine
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  • 1. - GIPPSLAND CARERS ASSOCIATION INC - VICTORIA National Disability Summit Meeting the Support Needs of Carers Jean L Tops – President 17-March-2014 ENHANCING CARER SUPPORT, CHOICE AND CONTROL: THE CARER’S PERSPECTIVE Ensuring the inclusion of the Carer: Is social Exclusion still Evident due to wide-spread Ignorance, dependency, lack of grass-roots support and Top-Down management? How do participant plans take into account support needs of the Carer - Preserving Income support for Carers, and other issues? Funding Family/Carer Advocacy- What is the place of families under the NDIS? What support is available outside the NDIS? The Commonwealth Carer Program Following the Productivity Commission’s Report: Will groups most disadvantaged by current arrangements (aged carers) be covered? Ensuring Sustainable Disability Reform through the NDIS
  • 2. - 5TH Annual National Disability Summit 17-18 March 2014 - 1 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org BIOGRAPHY Jean Tops is the Founder and President of the Gippsland Carers Association Inc. Created in Victoria in 1997, the Association offers support to some 26,000 regional family carers of PWD, aged frailty or mental illness. The Association reaches out in support of carers everywhere. Jean has a lifetime of caring experience having raised and supported three children with disabilities. Her determination to provide the best possible outcomes for her now 44 year old daughter (who is deaf/blind and multi disabled Rubella Syndrome) led her to be involved in a plethora of support groups and community based service provider organisations for almost five decades. She is recognised for her work through dozens of awards including Citizen of the year awards on two occasions, induction into the Women’s Hall of Fame during Celebration of the Centenary of Women’s Suffrage 2008, and 3AW Melbourne Radio-Local Hero Award August 2013 to name just a few. Jean was elected Chair of the Latrobe Valley Residential Services Association Inc (Group Home and Independent Living program) for 9 years, and served on the Carers Advisory Committee for Carers Victoria for 3 years. Her involvement includes reaching out to carers through forums and meetings, rallies and advocacy. She is passionate in writing detailed submissions to a multitude of government inquires including the Productivity Commission Inquiry for the NDIS. Jean has created detailed proposals for better grass roots support for caring families of people with dependent needs living in all regions. These proposals now rest with governments to truly support carers everywhere. Jean is deeply concerned to see the best possible outcomes created from the NDIS, not only for people with disabilities, but also for the families who provide the ‘glue’ holding the system together.
  • 3. - 5TH Annual National Disability Summit 17-18 March 2014 - 2 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org Meeting the support needs of Carers ‘The Glue that will hold the NDIS together and ensure it succeeds!’ Caring families and friends have always played a key role in supporting people with disabilities to be the best they can be, but this is not well understood. Ensuring the inclusion of the family carer within the NDIS is a large issue that can only be discussed briefly in the short time I have here; but, I hope you will gain an insight into why carers must be included in policy and planning for the scheme to succeed. Asking if social exclusion is still evident due to widespread ‘ignorance’, ‘dependency’ ‘lack of grass roots support’ and Top-down management is of itself a major discussion. For the general public to understand and support the role of carers, means governments need to first accept that the NDIS will not be able to replace the caring family’s enormous contributions worth more than $42Billion annually. These gifts are in essence priceless, but are not considered vital in the scheme planning processes? The National Health and Hospitals Reform Commission (2009:61) described ‘unpaid primary carers’ as the ‘invisible’ health workforce, in the context of health workforce shortages. The Productivity Commission (2011b) has observed that the economic contribution of informal carers is so great that no insurance scheme would be likely to fully fund its replacement. It is well known throughout the sector that more than 2.6 million unpaid carers provide accommodation, personal care and support, but this is poorly understood by the general public. The contributions they make do not translate into societal awareness, or ensure appropriate, government provided, tangible support for carers. The Productivity Commission has stated that’ “without the ongoing support of family carers the NDIS would FAIL”- yet public discourse surrounding the scheme shows that the public has little understanding of this. Government spending on advertising the NDIS aims to quell concern over costs, soften debate, and minimise expectations in the sector. The blinkers are then placed upon the public’s view of unpaid caring. Debate is hampered by the deliberate use of the word ‘carer’ to now mean many things- paid care, animal carers, environmental carers, child carers for working mothers. If you asked in the street how many taxpayer dollars are saved by caring families each year, would they be confused by the proliferation of carer titles, and would they assume that all families are “paid to care?” It is clear that the public discourse by policy-makers promotes that impression.
  • 4. - 5TH Annual National Disability Summit 17-18 March 2014 - 3 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org Carers know there is a Lack of grass roots support’ and Top-down management is obvious as a result of this! 1 National Health and Hospital Reform Commission 2009:61 - AU Welfare 2013 P323 Levels and tiers of government are designed to quell demand. Constant departmental name changes and policy changes confuse and stress those seeking assistance. Consultation is ad hoc and generally limited to peak agencies. This strategy deliberately misleads the public into believing services are better than they are, and that carers receive far greater assistance than they do. This management of demand leads carers to be sceptical of the NDIS planning processes which raise more questions than answers for them. The inclusion of carers is vital to the success of the NDIS, but sadly they are often excluded, maligned and dependent upon meagre assistance. This causes unacceptable levels of stress, poverty, illness and Isolation in the family home for most carers of loved ones with high dependency needs. Needs such as a roof over their heads, personal care and advocacy. The absence of basic rights, fairness, and grass roots help, is more painfully evident today than it has ever been as pressure to care mounts year by year. Does the public know that of the 460,000 people with severe or profound disabilities who are to benefit from the NDIS roll-out, currently less than 6,000 receive a government funded bricks and mortar accommodation service? This begs the question where is everyone else living now, and how much support do they receive from anyone? The estimate of people with a severe or profound disability (S/P) targeted to need support through the NDIS is less than one half of the 127,500 people to have such a S/P disability, and overlooks those who may be receiving help now but will be excluded from the scheme.2 Families and friends support the vast majority of people (almost 92%) who rely upon others for help. The level of assistance each carer receives is a pitiful shadow of what people will require in the paid scheme to replace only the primary carers as discussed here today. Carers say: Participant plans do not take into account the support needs of carers. Preserving income support for carers through carer payment, carer allowance and carer supplement requires that such payments stay outside of the Scheme for good reason. There is little debate on the issue, with stakeholders lauding the notion of self-directed funding plans that don’t appear to include a clear bricks and mortar solution. Where do they go if carers cease caring? Payments to support caring families have received little attention in the planning of the NDIS, and it is necessary for there to be a transparent understanding of how social security payments support family carers now and into the future. To clarify just how many carers are in receipt of Carer Payment and/or carer allowance we must compare the total number of unpaid carers (currently 2.6 million) with those carers who
  • 5. - 5TH Annual National Disability Summit 17-18 March 2014 - 4 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org are receiving financial assistance from government! (The available figures relate to both disability and aged care as government data tends to count all carers as a job lot.) 2 ABS 2009 SDAC- cat. no.4430.0 ( 2009), p. 4. The latest figures available are for 2011-12 - FaHCSIA Administrative data3 , which show that of the 2.6 million carers: There were 205,565 carers in receipt of a Carers Payment, 8% of all Carers. This payment is income tested and paid only to individuals who have no other income or government payments; in other words the payment is for income support and is equal to a disability pension payment. There were just 549,638 carers in receipt of a Carers Allowance, or 21% of the total number of carers. This allowance is means test free and is currently around $118 per fortnight. This data begs the question of why all primary carers (771,400 - in 11-12) are not receiving a Carer Payment if it is indeed a payment for caring. We also ask why all unpaid carers, and at the very least, all primary carers, are not receiving the Carer Allowance? We already know that the federal government has announced a cessation of Mobility Allowance payments to people with disabilities when each is assessed for individual funding plans. What will be next? Government driven community belief is that ‘all carers’ have support payments from the taxpayer purse, which is clearly untrue. A better planning process is required to ensure family carers have their financial needs considered in developing funding plans for persons who choose to remain with families. The NDIS planners have to date, made all the rules to suit their own ideology, which clearly relegates caring families to a back seat whilst expecting them to continue to provide free accommodation and care services with little or no assistance. This NDIS process has already excluded carers from the ‘right’ to have an ‘assessment of their needs’ when the person with a disability is assessed. (Carer/Family assessment, is a clear recommendation of the Productivity Commission that is ignored). The current proposal is for family to be present at assessment ‘if deemed appropriate’. The critical question then is just who is deciding if a family carer can be present, let alone be assessed for ongoing needs. If care is to continue, an essential change in NDIS Policy is required! Funded Family/Carer Advocacy: We must surely ask what is the place of families under the NDIS?, because Grass Roots Support and advocacy is an absent link in the support chain for Carers. Carers do not have a local voice in planning and policy-making. Carers require peer-driven local information, links to local services, and direct support to the family home when distress sets in. How else can they receive such basic bottom-up access to help and a voice in planning, which truly speaks with them; not for them? This is essential?
  • 6. - 5TH Annual National Disability Summit 17-18 March 2014 - 5 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org For many years we have sought region-based grass roots, local peer support services to provide carers everywhere with a close-to-home, help system. We know that local peer support and advocacy works because we have provided this service over 17 years in Gippsland. 3 FaHCSIA Administrative data - 2011-12 In order to ascertain if the NDIS would assist carers to achieve this outcome, we attended a forum late last year on the Mornington Peninsula. The NDIS Launch Site planners for Barwon in Victoria were present and answering questions about NDIS services. We asked the specific question: would Carer Advocacy be funded through the NDIS and the answer came back swiftly as ‘NO it would not’. The carer’s right to expect direct government support is not enshrined in any Carer Recognition Legislation at the Federal or State/Territory level. In fact, all legislation relating to carer recognition is about ‘patting family carers on the back’ whilst providing no direct support entitlements’. It is an indictment of governments that in any discussion forum or review process, the family carer is almost always the only delegate attending at their own expense. Every disability service provider, self-advocate, and government official, is sitting at the table as a Guest of the Taxpayer, but the cost of attending such events is out of the reach of the vast majority of carers. Caring families have the lowest wellbeing score of any sector of Society as tested and reported by academia in the Australian Unity Wellbeing Index- Quote: “the wellbeing of many carers is in a precarious state. Carers have the lowest collective wellbeing of any group and have an average rating classified as moderate depression and are highly likely to carry injury associated with reduced wellbeing’. 4 Region-based disability self-advocacy has enjoyed funded government support for decades. Is the role they play more valuable to people with dependent disabilities than the role played by family carers? Our response is a resounding ‘NO’ it is not! Both advocacy roles have equal value to the wellbeing of people with disabilities and their families. A very large group of people with profound disabilities who reside with families have little or no ability to express any wishes regarding their self-determination. Yet the families who know them best are ignored in planning processes. It is critical that government and the NDIS Planners and regulators heed the families who are crying out for grass roots assistance, before their cries are silenced by relinquishment and withdrawal of unpaid accommodation and care services. This neglect must change if caring is to be available for future generations of those who need care.
  • 7. - 5TH Annual National Disability Summit 17-18 March 2014 - 6 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org 4 Australian Unity Wellbeing Index, Carer Health and Wellbeing, 2007 In asking what support is available outside of the NDIS? We must understand that the NDIS poses many unanswered questions for those waiting to discover the joy as well as the disappointments that will be sure to follow as the NDIS trials roll-out across the nation. What will become of the support from other sources of government funding, such as: The Federal Respite for Carers Program [CRCP] and Home and Community Carer [HACC] Programs? These programs are funded by Federal government from the Aged Care and Health portfolio. Both these services offer time-limited and ad hoc respite, community access and in-home support to the elderly as well as people with disabilities. Any decisions to cut these programs under NDIS roll-out will undoubtedly affect people with disabilities who fall outside the strict NDIS eligibility criteria, but will still require ongoing support if assistance is already provided and/or needed. Following the Productivity Commissions Report: will groups most disadvantaged by current arrangements (such as those receiving care by Ageing Carers) be covered? Many people with disabilities are living with frail and elderly parents who are well past the retirement age of 65 years. In 2009 this number was 520,500. 5 The Productivity Commission targeted ageing carers as a priority group, but the answers are not clearly defined. There are other groups of people with disabilities currently receiving supports from ageing parents and family carers, who may not fit the category of the 640,000 persons with severe or profound disability to qualify for NDIS plans. These will certainly be disadvantaged by this new scheme. How will these ageing carers receive ongoing help in the home? Included in this category will be people with intellectual disabilities, acquired brain injury, and mental illness, who currently live stark and poorly funded lives in Supported Residential Services (SRS’S), rooming houses, and the like. Without any plans to find alternate funding sources when the current state/Territory system expires, these people will be outside of any scheme or funded help services at all, which is unacceptable! This issue raises a question about funding individual accommodation choices for people with profound disabilities who may wish to live alone and require 1/1 support to achieve this. Current average costs in the trial sites is around $42,000 per service but existing “real-world” choices cost over $120,000 in group settings. The most important contributors to the success of the NDIS and its affordability are the family carers who are the glue that will hold the NDIS together.
  • 8. - 5TH Annual National Disability Summit 17-18 March 2014 - 7 NDIS-The Carers Perspective - Jean L Tops, President, Gippsland Carers Association Inc. Victoria Breaking the Silence on unpaid caring - AIN A0035748T – www.gippslandcarers.org To illustrate the endemic failure to care, allow me to share a carers story with you ……… Case Study - with permission 5 The AIHW - Australia’s Welfare 2013. P331 Nita and her family live in a small regional city in central Gippsland. Nita and her husband Ken, care for their twin daughters aged 36 years. Both daughters, Ingrid and Anita, suffer from epilepsy, with frequent Grand Mal seizures, along with mobility issues. The girls attend a day Activity Service in a neighbouring town because there are no such services where they live. Nita has some out- of-home help for community activities, which usually translate to a paid carer to help one daughter while Nita helps the other. They call this respite! But, for whom? There is just one respite group home with 6 beds in the local area and the nearest alternate respite service is at least 80 -100 km away. Nita and Ken paid to build a home for both their daughters future, but there is no funding to provide a supported living service for Anita and Ingrid to move in. Nita has begged for help and in desperation asked for just two days of respite per month (in the girls new home) to give her and Ken a break from caring. Nita wants the girls to have transition training in their own home, which stands empty. Nita is 65 and Ken may need further urgent treatment for his prolonged illness (Ken has myelofibrosis). An Individual Funding Plan (ISP) was completed for both Ingrid and Anita where a request for 48 hours of respite per week for 48 weeks was estimated to cost at least $60,348 each P/A. Following the ISP Review, with no long term options available, DHS granted a one-off funding of $20,000 to Nita for a short term respite trial of two days per month. DHS has not been able to recruit enough suitably qualified staff to provide the service. The lack of access to suitable staff, points to the paucity of funded services to support caring families in regional and remote locations, and must be addressed in NDIS Plans. Nita knows that a single active night shift costs $500, and that union regulated minimum hours rosters add to the costs. The respite roster calls for a two hour shift from 7am to 9am after active night duty ends, as the both girls then go off to the ATSS. But, the rostered time allowed requires that a minimum of 3 Hours be paid, an extra loading of 2 hours included in the costs. Such failure in support is a major contributor to evidence that primary carers are forced to live with stress, poor health and in poverty in a failed system. For the NDIS to succeed, planners must solve this staffing problem to ensure the ongoing availability of caring families. This must plainly be done with families, to ensure success. The NDIS holds much promise, and choices for the lives of thousands of Australians, but there are many challenges ahead for the scheme and for carers. Clearly the need to keep carers caring is now more vital than ever. Are planners listening?