As the voice of Australia's macular disease community, Macular Disease Foundation Australia makes submissions to government that aim to improve access to relevant services and support for the macular disease community. These may be in areas such as medical treatments, low vision aids and technologies, social services and ageing.
During 2017, the Foundation made representations on behalf of the macular disease community:
Senate Inquiry on the delivery of outcomes under the National Disability Strategy 2010-2020
To achieve the desired outcomes of the National Disability Strategy 2010-2020, the Foundation made recommendations to the Senate Inquiry to establish a nationally funded low vision aids and equipment program, further reforms to improve equity of disability support services between the disability and aged care system, and remove the protection of the National Disability Insurance Scheme Act 2013 from the Age Discrimination Act 2004. The Foundation aimed to standardise the provision of low vision aids and technologies across all states and territories, and for those who are excluded from the NDIS to receive adequate and appropriate disability support services.
Disability Discrimination Commissioner national consultation
The Foundation provided a submission to the recently appointed Disability Discrimination Commissioner's national consultation on his priorities. The submission focused on the fifth priority area, “Implementation of the National Disability Insurance Scheme (NDIS)" and made a number of recommendations, including allowing the NDIS age limits to be challenged under the Age Discrimination Act 2004, removing NDIS age limits, the addition of ‘people with a disability’ as a special needs group in the Aged Care Act 1997, improving equity in the accessibility and affordability of support services between the aged care system and the NDIS, and establishing a national low vision aids and equipment program.
2017-18 Pre-budget Submission
The Foundation highlighted the priorities of the macular disease community to the Commonwealth Government in the 2017-18 Federal Budget. The Foundation recommended the government carefully consider the impact of policies that shift health care costs to patients; increase Medicare subsidised ocular coherence tomography (OCT) scans for anti vascular endothelial growth factor (anti-VEGF) injections; and for the Productivity Commission to investigate the benefits and costs of establishing a national low vision aids and equipment program.
During 2016, the Foundation made representations on behalf of the macular disease community:
New disability employment services model
This new model aims to improve user access to disability employment service providers and workplace assistance. The Foundation recommended there be no restrictions or limits placed on clients choosing or switching service providers, along with the need to regulate service providers through the establishment of a quality assurance system.
New integrated carer support service model
This new model aims to provide services to more carers in order to reach them earlier in their caring journey. The Foundation recommended that the new model integrate and improve on existing services, instead of replacing them, and supported the need for adequate funding and planned respite.
Aged Care Legislated Review
This Review investigated the impact of changes to aged care legislation since 2012 and the direction of future changes. The Foundation recommended greater integration of specialist disability support services and amendments to the Aged Care Act 1997 to recognise older people with a disability as a vulnerable group with special needs.
Senate Inquiry on the transition of the Mobility Allowance into the NDIS
The Foundation provided a submission to the Senate Inquiry highlighting that the impact of the Social Services Legislation Amendment (Transition Mobility Allowance to the National Disability Insurance Scheme) Bill 2016 would initially exclude those aged 65 years or over, and those under the age of 65 with slight or moderate disabilities, from receiving the Mobility Allowance. Once this program closes on 1 July 2020, this support would only be available for NDIS participants.
The Foundation recommended the Bill be rejected by Parliament. In its place should be a Bill which ensures that people who are unable to use public transport without substantial assistance due to a disability, illness or injury, and do not qualify for the NDIS, can continue to receive the Mobility Allowance on an ongoing basis.
National Aged Care Advocacy Program Framework
The aim of the Framework was to guide the provision of individual advocacy services delivered through National Aged Care Advocacy Program (NACAP). The Framework set the key principles, priorities and outcomes that aimed to enable NACAP providers to deliver effective and high quality aged care advocacy services, and provide support for them to achieve a nationally consistent approach. The Foundation supported the alignment of NACAP with the National Disability Advocacy Programme, and made a number of recommendations, including that 'older people with a disability' should be included as a NACAP target group for additional support.
Pharmacy Remuneration and Regulation
The Foundation provided a submission to the Independent Review of Pharmacy Remuneration and Regulation to recommend changes to community pharmacy. The submission highlighted issues affecting the macular disease community, including that pharmacies should not charge above the PBS maximum fee, larger font labels be provided for people with low vision, and improved education of pharmacists and assistants to ensure that sale of complementary products is supported by informed discussion.
Optical Coherence Tomography (OCT) rebates
MDFA provided a submission to the Medicare Specialist Services Branch on Optical Coherence Tomography (OCT) rebates, welcoming the Medical Services Advisory Committee's (MSAC) recommendation to list OCT onto the Medicare Benefits Schedule (MBS), but also proposing increasing the number of subsidised OCT use.
Increasing Choice in Home Care - Stage 1 - Proposed changes to delegated legislation consultation
The Federal Department of Health was considering changes to home support and home care programs in the aged care system to allow greater flexibility for consumers to choose and change their home care provider. The Foundation’s submission provided recommendations including that the low vision needs of consumers should be reflected in the new national prioritisation process; tougher sanctions should be given to providers who are systematically non-compliant with reconciling unspent funds within the stated timeframes; and 'people with a disability' should be added as a special needs group in the Aged Care Act 1997.
Designing the new integrated carer support service
The Foundation supported various elements of the draft service concept for the proposed integrated carer support service, including the multi-component intervention that incorporates financial support, carer mentoring and respite support; and choice, control and freedom for carers to choose the services they need. The Foundation also recommended the draft service concept explicitly state its linkages and integration with other systems to make it more responsive and prevent duplication, and that effective data collection must be an essential part of the service.
National Disability Advocacy Program
The National Disability Advocacy Program will provide a model to fund disability advocacy services. The Foundation’s submission recommended increased provision of advocacy services; equitable access to advocacy services through telephone and online tools; funding of specialist disability advocacy organisations; ensuring NDIS participants are accurately assessed and provided with appropriate services; and addressing the protection of the NDIS Act 2013 from the Age Discrimination Act 2004.
National Strategic Framework for Chronic Conditions
The Framework is being developed to provide a national approach to guide planning, design and delivery of policies, strategies, actions and services to reduce the impact of chronic conditions in Australia. The Foundation’s submission recommended coordinated long term management of chronic disease to ensure a smooth pathway between health, disability and aged care; metrics determining success to include Quality of Life and Independence measures; the increased use of data sharing and data linkage for use by researchers; and improved accessibility to information. The Foundation strongly supported focus on prevention and risk reduction, but highlighted that risk reduction extends beyond new disease, and should extend to reducing the risk of existing disease progressing, or reducing the risk of major complications if the disease does progress. It was also highlighted that the Framework’s principle of equity and access was inconsistent with recent reforms, such as the NDIS age limit, that are intentionally discriminatory based on age, and that the continually increasing out-of-pocket costs is a major barrier to early diagnosis, early and adequate treatment.
Senate Inquiry on the Future of Australia’s Aged Care Sector Workforce
The Foundation made recommendations to the Senate Inquiry on the Future of Australia’s Aged Care Sector Workforce regarding vocational education and training of people working in the sector and the establishment of a strategy for workforce development. The Foundation’s aim is to ensure that people living in aged-care facilities, including those with vision loss and blindness, receive appropriate care. At a consumer roundtable the Foundation highlighted aspects of a ‘broken system’ that requires urgent fixing, especially with respect to injections for wet macular degeneration and access to low vision aids and technologies.
2016-17 Pre-budget Submission
The Foundation proposed Federal Government funding for its Helpline, support services, education and awareness campaigns, aligning its programs with the Commonwealth Government’s National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss. The submission highlighted that the Foundation’s services and programs reduce the incidence and impact of macular disease and in doing so, generate significant savings for the nation.