NEURO-MUSCULAR ALLIANCE TASMANIA

Submission to NDIS Bill 2012

This submission is tabled on behalf of the Neuro-Muscular Alliance Tasmania (NMAT) which is an alliance of seven Tasmanian not for profit organisations which support people who have chronic progressive muscular or neurological conditions.

Alzheimer’s Australia, Tasmania Australian Huntington’s Disease Association (Tas) Inc. The Motor Neurone Disease Association of Tasmania Inc. Multiple Sclerosis Society of Tasmania Inc. Muscular Dystrophy Association of Tasmania Inc. Parkinson’s Tasmania Inc. Spina Bifida Association o Tasmania Inc.

All are incorporated bodies - two have full time paid staff with the others managed partly by very small grants and volunteers or fully by volunteer committees. All depend on fund raising to enable them to operate.

NMAT totally supports the concept and the intent of the NDIS and is grateful for the opportunity to respond to the call for submissions. However we wish to note that at this time our response is compromised by pivotal documents being not completed and available for use to scrutinise. We hope once these are available there will be opportunity for further input.

The submission is divided into two sections – one from a “participant” perspective and the other from a ‘provider’ perspective

SECTION 1 – Participant perspective

• Options 1-4 articulate the varying degree of the major issues that need to be considered however as this is a major step change in how disability services will operate in this country it is considered that some elements of each option may need to be considered as part of implementation. A good example is where people have high levels of sensory or cognitive impairment. The system needs the ability to be able to respond to individual needs and allocate and put in place the appropriate support and management mechanisms. The Assessment process needs to be individualised, flexible, collaborative, respectful and responsive. Decisions need to be made within publicly stated timeframes.
• It is pleasing to note that on page 88 - Assessment, of the Regulation Impact Statement “Once a person becomes a participant in the NDIS, they continue to be so until the person dies; or the person turns 65 and enters permanent residential care; status as a participant is revoked, or they withdraw voluntarily.” This gives clarity to how people will be supported over their lifetime.

• A one stop shop approach to assessment is totally supported where ongoing assessments can be undertaken in a structured and timely manner once all the information in respect to an individual is provided.

• When looking at the cost of each option it is essential to look at the potential long term outcomes that can be delivered. Early intervention in respect to particular disabilities is the key to being able to maximise the potential benefits and contributions an individual can make to their community, family and supporters.

• Planning for where service delivery support points will be available is essential for accessibility for clients.

• Rural and remote limitations cause many barriers and the approach taken must address these specific issues. The main concern is that the market will not provide adequate services to people with diverse needs. Transitional stages in life raise differing needs for individuals and therefore require particular attention so that the transition is as smooth as possible.

SECTION 2 – Provider perspective

• For the Assessment process to work efficiently and effectively it will need assessors with the attitudes, skills and experience (strengthened by life experience) to embrace diversity in all its forms including: disability types, carer and family needs, cultural variations, gender, sexuality and geographic disadvantage. Assessors will need to be experienced with and knowledgeable about people with a particular range of disabilities and the ongoing, often complex changing care needs.
• It is imperative that the new system recognises the complex and inter-dependent dynamics of disability, family and community. Transformation is required from the current view where people with a disability are often viewed as a burden on society. A totally holistic and person centred care approach is a minimum requirement. To support this transformation it will be necessary to run public education and awareness programs covering people from all walks of life of the achievements and contributions people with a disability make.
• For organisations to make the transition from the current service delivery approach will in many cases require funding support for capital expenditure and operating costs. Many organisations live hand to mouth and therefore have minimal reserves to address the structural changes that will be required to be a successful contributor in the new market place. Implementation should not be at the expense of current service delivery. In the operational sense it will require at least monies for staff development, development of marketing material and financial analysis capability so that the organisation can provide to care recipients the costs of services. In addition, the current business models will need to be completely revamped so that organisations can determine what will be their future key activities and whether some services traditionally provided are brokered out and ceased to be offered. Also of note there should be provision for future inflation and indexation issues. These are key transitional issues that will need to be faced by every organisation and in some cases it will require the employment of external consultants because the skills required are not available within the organisation.
• Organisations will be expected by their current client bases to provide education and information sessions so that they can understand the options that they may exercise.

This will be a fixed cost on the organisations and even though they perform this function

well it will not guarantee that they will continue to provide services to this client.

This is a key market focus transition issue and is a key to the successful implementation of NDIS. It is therefore essential that organisations are provided with financial incentives to perform this function well or there will be major impacts associated with implementation and transition to a market led service delivery model.

• Services provided will need to take into account the differing needs of the full diversity of people with a disability, their families and carers including diversity in disability types, cultural variations, gender, sexuality and geographic disadvantage.
• Rural and remote limitations cause many barriers and the approach taken must address these specific issues. In order to minimise these issues and particularly encourage organisations to provide a broad range of services they will need to be supported for particular activities via block funding.
• A significant number of organisations are supported or solely managed by Volunteers as they do not have in the current system funding to support paid staff. Of particular concern is that these long serving people are not forgotten as NDIS is implemented.
• The Transitional organisation provides a real opportunity to learn and share before NDIS is implemented more broadly. It is imperative that these learnings are shared and that if necessary the Regulatory environment is changed and that this is reflected in the NDIS rules.
• The role and function of Advocates for clients is most likely to change, particularly in the initial stages of implementation where individuals will be unsure as to whether they have been appropriately supported in this transition. It will also provide safeguards for the system overall so as to curb any potential dysfunctional behaviour on behalf of organisations and individuals.
• Research and Development needs to be encouraged so as to share ways where new approaches can be shared. Perhaps this is a key role that Peak Organisations could be encouraged to support.