NDIA Accountability Project

Support for young people with acquired brain injury requiring high levels of care

‹ PrevPage 1 of 4 · Source p. 1Next ›

Submission to the

National Disability Insurance Scheme Bill

Senate Inquiry

January 2013

This submission was authorised by Eileen McCormack, President, and written on behalf of Inability Possability Inc (IP) ABN: 15 114 313 739, by Megan Atkins, Secretary

INABILITY POSSABILITY INCORPORATED

BACKGROUND

Inability Possability is a Melbourne based volunteer organisation, which seeks to address situations of disadvantage experienced by young people with acquired brain injury (ABI) requiring high levels of care. These young people are amongst the most vulnerable people in the community. Due to the nature of their acquired disabilities, they are often powerless to challenge structures that keep them in their position of disadvantage. However, given appropriate environments, resources and care, these young people can continue to make significant improvements for many years, and actively participate as interdependent members their community and broader society.

Following Inability Possability’s incorporation in 2001, several projects were undertaken to increase awareness of the isolation and reality experienced by young people with ABI and their families. These led to Inability Possability initiating a meeting of Victorian based young people with ABI, their families, friends and carers in January 2002. The meeting resulted in the formation of a Family and Friends Association. The Association includes young people who live in nursing homes who are cared for at home or who are awaiting placement in an acute care facility. Facilitated by Inability Possability, the Association has contact with over fifty people, including twenty young people with severe ABI.

STATEMENT OF PURPOSES

The purposes of Inability Possability Inc. are to work together with young Australians with acquired brain injury who require high levels of care to:

  1. increase awareness of the core people’s needs;

  2. create and facilitate opportunities for the core people to participate as interdependent members of society. Opportunities may be so created to secure appropriate accommodation and environment, to enhance their social, creative and recreational functions, interactions and possibilities;

  3. respect the dignity, uniqueness and choice of the individuals with whom the organisation works;

  4. offer a supportive environment to the core people’s families, friends and carers to enhance their ability to identify and meet the needs of the core people;

  5. work collaboratively with other appropriate bodies and organisations in achieving the above; and

  6. seek funding to support the programs to meet the above purposes.

INTRODUCTION

Inability Possability welcomes the opportunity to provide feedback to the Senate Enquiry into the National Disability Insurance Scheme Bill, 2012. Inability Possability provided a submission to the

Australian Government Productivity Commission Inquiry Into Disability Care and Support in

August 2010, gave evidence at the public hearings in Melbourne, and provided a response to the

Australian Government Productivity Commission Disability Care and Support Draft Report in

April 2011

We see this as an opportunity to give further serious consideration to the provision of accommodation, social and medical care for young people with an Acquired Brain Injury requiring high levels of care.

Inability Possability has provided a response to Sections 33 to 36. Our submission relates most directly to, and focuses on, young people with an Acquired Brain Injury requiring high levels of care, their families, friends and carers. We believe that appropriate and sustainable accommodation encompassing an appropriate social and medical care model is essential, and a right, for these young people and their families so that they can participate as interdependent members of the Australian community.

RESPONSE

33 Matters that must be included in a participant’s plan (1) A participant’s plan must include a statement (the participant’s statement of goals and aspirations) prepared by the participant that specifies:

As many people with severe ABI are non-verbal, it is important to consider that people representing the participant will also need to be included in the preparation of the plan.

(5) (b) have regard to relevant assessments conducted in relation to the participant;

For people with severe ABI, assessment can be difficult to classify as there is currently no specific assessment tool. With assessment for the NDIS, it needs to be considered that a more specific classification tool is developed. The Resident Classification Index is used for assessment of need for those in the Aged Care sector, and something similar could be developed for people with a disability and high medical care needs. People with a disability are not a homogeneous group. This may go some way in eliminating the ongoing situations where the person’s disability has to be described to convince those concerned that they are entitled to a particular service or level of service.

(5) (f) Have regard to the operation and effectiveness of any previous plans of the participant.

For many young people with severe ABI, they currently are excluded, through lack of funding, of appropriate programs or ‘plans’. It needs to be considered that even though they might not have been able to access a program, it would still be relevant and beneficial to the participant. The ABI:Slow to Recover Program (in Victoria) is a unique and positive initiative (1996-2008) to assist young people who are non-compensable to have the opportunity of rehabilitation.

34 Reasonable and necessary supports (b) The support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;

Ongoing rehabilitation for people with severe ABI is vital, and it must be noted that the ‘benefits achieved’ can sometimes take years, such as learning to swallow food. Rehabilitation in the context for people with ABI with high medical care needs to be thought of differently from general view within the health system. For some, rehabilitation usually means periods of 6, 12 or 18 months, and then you are finished and out of the system. However, for very severe hypoxic brain injury, a rehabilitation approach and integrated program is a life-long process to enable health and gains, which can continue over many years. This point is to note that the measuring ‘benefits’ will differ for this group.

(f) the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of serviced delivery of support services offered by a person, agency or body, or systems of service delivery or support services offered:

Young people with severe ABI require both high levels of health care and disability support. We are concerned that once again, this group will ‘fall through the cracks’ of funding through the separate operations of the disability and health sectors. Current process to enable sectors including heather, aged care, rehabilitation and disability to work together are very complicated and sometimes non-existent. The mid term review of the Young People with Disability in Residential Aged care COAG initiative 2006-2011 http://www.fahcsia.gov.au/Pages/default.aspx, points to a need for health, disability, aged care and rehabilitation sectors to come together to address the needs of this small group with very high needs.

36 Information and reports for the purposes of preparing and approving a participants plan (b) (i) Undergo and assessment and provide to the CEO the report, in the approved form, of the person who conducts the assessment

One issue that could arise in regard to this point is experienced professionals to conduct the assessments. Through our direct knowledge of young people with severe ABI and our contact with families we are aware of the difficulty finding professionals within all disciplines who have experience in Acquired Brain Injury. The shortage is in almost every aspect of medical and allied health and includes General Practitioners, Physiotherapists, and Occupational Therapists, Speech Pathologists, Nurses, Social Workers and other direct care staff. The health care needs and long term recovery as well as maintaining optimum health requires a specific knowledge and experience when working with this particular group. We believe there should be supported education and training through all education and health services.