IAC advice on reasonable and necessary support across the lifespan: An ordinary life for people with disability

Contents

Executive summary

Recommendations

  1. Introduction
  2. Enablers of an ordinary life
  3. Barriers to an ordinary life
  4. Special considerations for Aboriginal and Torres Strait Islander people
  5. Special considerations for people of CALD background
  6. Special considerations for people in rural and remote areas
  7. An ordinary life across the lifespan
  8. The organisation of support clusters
  9. Bibliography

Appendices

A. Reasonable and necessary support across the lifespan

A1. Key features for babies to 2

A2. Key features for children 2-5

A3. Reasonable & necessary support for children birth to 5 and their families

A4. Key features 6 to 12

A5. Key features 13 to 15

A6. Reasonable & necessary support for children 6 to 15 and their families

A7. Key features 16 to 25

A8. Reasonable & necessary support for young people 16 to 25 and their families

A9. Key features for adults 26-55

A10. Reasonable & necessary support for adults 26 to 55 and their resident families

A11. Key features adults 55+

A12. Reasonable & necessary support for adults 55+ and their resident families

B. Analysis of support clusters in relation to enablers of an ordinary life

Executive summary

The National Disability Insurance Scheme (NDIS; the Scheme) has been established to provide ‘reasonable and necessary supports’ to individuals with a severe and permanent disability.

‘Reasonable and necessary support’ refers to the nature and quantum of support to enable a participant to pursue goals and aspirations. It must give effect to Australia’s obligations under the United Nations Convention on the Rights of Persons with a Disability (UNCRPD) by supporting people with disability to live independently and be included in the community, to develop their capacities and to enable them to exercise choice and control. Reasonable and necessary support must also be value for money, effective and beneficial for the participant, while taking into account what is reasonable to expect families, carers, informal networks and the community to provide and be most appropriately funded by the NDIS rather than through other government systems of service delivery.

The paper takes an ‘ordinary life’ in 21st century multicultural Australia as its starting point because people with disability share the ordinary aspirations of their peers without disability but need reasonable and necessary NDIS support to achieve them. The ordinary life provides clues as to how these aspirations would typically be met providing a useful benchmark to guide understanding of reasonable and necessary support.

It is hoped that this document is used:

  • by the NDIA in its ongoing development of the Scheme
  • by participants in conceptualising their goals and aspirations
  • as part of conversations with mainstream service providers about assisting people with disability to achieve an ordinary life, and
  • as an educational tool for the broader Australian community on the role and purpose of the NDIS.

In reading this paper, the reader should be aware that core to the NDIS are the insurance principles and scheme sustainability. This means that in providing reasonable and necessary supports, the National Disability Insurance Agency (NDIA; the Agency) takes a long-term investment approach, noting that early intervention and other support can increase functioning, independence, and economic and community participation. The NDIS is only one part of a broader disability system that requires systemic changes to ensure the NDIS can flourish. The provision of ‘reasonable and necessary support’ will by itself transform the lives of people with disability. It requires community involvement, the removal of structural barriers to economic and community participation, the provision of services by mainstream providers and the development of a deep and robust market, which will only develop with time.

Accordingly, this paper acknowledges that the successful implementation of some of the recommendations contained in this paper depend on the broader disability reform agenda, including the National Disability Strategy.

Section 2 draws on evidence from the fields of psychology, education and work, and in relation to ageing, to explore factors that improve health and wellbeing in an ordinary life. These factors are described as enablers of an ordinary life because evidence confirms that they contribute to quality of life by meeting fundamental human needs. The factors include:

  • positive relationships
  • a sense of belonging
  • individual autonomy
  • active involvement in decision-making
  • active engagement in community
  • using one’s unique strengths in ways that provide a challenge, and
  • making a contribution.

To date, the capped crisis driven state disability service systems have enabled people with disability to aspire to a service. By contrast, the NDIS enables people to aspire to a life, and pursuit of the enablers is the best possible opportunity to ‘get a life’.

Section 3 examines significant barriers to an ordinary life, such as:

  • negative attitudes that view disability as a tragedy, and people with disability as eternal, dependent clients
  • service models that congregate people and segregate them from community
  • individualised support that acts as a paid friend rather than as a life facilitator, and
  • risk management approaches that deprive people of ordinary opportunities.

The paper outlines ways by which the NDIS can better support an ordinary life. In particular, the paper considers the benefits of providing quality infrastructure to underpin direct support and enhancing arrangements to purchase staff training. The paper notes that without such measures, direct support often remains as a paid friend rather than a facilitator of relationships, making it difficult for participants to pursue their own interests and develop informal support.

The paper also considers the need for the NDIA to continue to develop the Scheme so that supports can be used innovatively and in a cost effective manner.

The importance of capacity building for people with disability and families is noted, recognising its role as a major stimulant for change in the disability service provision market. Capacity building will ensure that ‘demand’ is created, to which the market must adapt. While the Independent Advisory Council (the Council) accepts that the market will need to evolve over time and is largely outside the control of the NDIA, any strategy to develop the market, and expenditure of sector development funding, should focus on capacity building.

Sections 4, 5 and 6 canvass additional considerations related to people who experience multiple disadvantages, i.e. Aboriginal and Torres Strait Islanders (ATSI), people of culturally and linguistically diverse backgrounds (CALD) and people living in rural and remote areas, and identify additional work that is required. The paper highlights the need to undertake further work in these areas as a matter of priority.

Section 7 examines what reasonable and necessary support would look like for cohorts of people with disability and the families with whom they live.

Section 8 encourages the NDIA to consider how it could think about consciously working towards the enablers of an ordinary life.

Recommendations

In relation to reasonable and necessary support

1. Consider how the concept of ‘an ordinary life’ can be captured in guidance materials for planners and participants on what constitutes ‘reasonable and necessary support’

Research identifies clear factors that contribute to health and wellbeing, namely positive relationships, a sense of belonging, achieving autonomy, active involvement in decision-making, opportunities for challenge and contribution. These factors are described as the enablers of an ordinary life but are not currently given prominence in NDIS material, either for participants or planners. This is primarily because the National Disability Insurance Scheme Act 2013 (NDIS Act) requires the NDIA to provide reasonable and necessary supports that are aligned to individual goals and aspirations.

The Council recommends that the Agency considers how an ‘ordinary life’, consistent with the objectives and principles of the NDIS Act could be used to guide what is reasonable and necessary support.

2. Re-organise information about reasonable and necessary support in ways that promote the enablers of an ordinary life.

The document Support Clusters Definitions and Pricing provides information primarily for planners and service providers about services and supports. The Council considers that this information could be organised in a way that highlights the features of an ordinary life, while still being consistent with the NDIS Act. Accordingly, the Council recommends that:

  1. There is an audit of guidelines on supports and consideration given to how these could be framed to enable participants to have an ordinary life.
  2. The information provided about services and supports (the current Support Cluster Definitions and Pricing document) is reorganised for the purpose of highlighting life tasks and supports to build an ordinary life.
  3. The process of reframing information about supports is co-designed with people with disability, families, advocacy and capacity building organisations, service providers and the NDIA.
  4. Steps are taken to gain greater consistency in supports provided in a plan, especially access to support coordination to implement a plan.

3. Operationalise the recommendations in relation to an ordinary life across the lifespan

Appendix A has used the lifespan approach to provide guidance as to what reasonable and necessary means across the lifespan.

The Council recommends that the NDIA consider how it could operationalise this as guidance for planners, participants and the general community.

In relation to Scheme design

4. Consider the strategies to enhance the capacity of participants to direct their own support

If direct support is to transform an outing with a paid friend to the facilitation of relationships, build informal support and then fade out paid support, quality plan implementation support is required to provide an infrastructure. This is also required if participants want to begin to take on responsibility for staffing or support coordination. In an insurance framework, this is an important upfront investment that will lead to improved and more sustainable outcomes for participants.

The Council recommends that quality plan implementation support required to provide life building support for an ordinary life is considered an essential element of reasonable and necessary support.

5. Ensure opportunity for participants to select their own staff

The capacity to select one’s staff is an aspect of self-direction most valued by participants and essential if participants are to develop valued roles and informal support.

The Council recommends that the NDIA consider how participants could be encouraged and supported to select their own staff, instead of relying on service providers to act on their behalf.

6. Enable participants to purchase training in specific skill sets for staff

Many participants want their staff to have core skills that are not provided in any standardised training. Other participants actively seek staff that have never had disability experience because they want to orient and train staff in specific skills fundamental to their work.

The Council recommends that in developing the workforce strategy, and in undertaking further work on the efficient price, that consideration be given to how targeted training can be provided to staff that require a specific understanding or skill in order to meet the support needs of a participant.

7. Make provision for life planning as part of reasonable and necessary support

Through its community roundtables, the Council has found that participants want changes in their lives but currently struggle to articulate what they want and how they will achieve it. They need time and support to plan over an extended period. Elsewhere, the Council has recommended that the NDIA, while still applying the NDIS Act, differentiate in practical terms between a funding plan and a life plan: a funding plan being the quantum of NDIS funds allocated to provide reasonable and necessary supports; a life plan being the plan for a participant to achieve their goals and aspirations.

The Council recommends that every participant should be provided with access to support for life planning, the results of which will be submitted to the NDIA for consideration as a plan noting that to accord with the NDIS Act, the NDIA would need to ensure that the supports aligned with the participants’ goals and aspirations.

8. Consider innovative ways that supports can be provided, including through home share arrangements

The Council recommends that the NDIA consider innovative ways of enabling support to be provided. For example, the Council recognises existing practice whereby people with disability encourage individuals without disability to live with them and provide informal supports in return for subsidised rent.

While the Council supports this approach, it notes that it is always the responsibility of the participant to meet the costs of their own rent. Council will undertake further work on this issue in 2015.

9. Undertake additional work to clarify the meaning of reasonable and necessary support in relation to Aboriginal and Torres Strait Islander (ATSI) people

The complexity of issues related to reasonable and necessary for ATSI populations warrants its own work. The Council notes that the NDIA is currently delivering services in remote areas of South Australia and the Northern Territory, and is developing an indigenous strategy.

The Council recommends that the NDIA:

  • brief the Council on innovative strategies that have been adopted in ATSI communities, and
  • consult the Council on the development of the indigenous strategy.

10. Undertake additional work to clarify the meaning of reasonable and necessary support in relation to people from culturally and linguistically diverse backgrounds

The Council recommends further work be undertaken to understand reasonable and necessary support in relation to people from CALD backgrounds. The Council notes that the NDIA has already commenced this work.

11. Make additional adjustments in relation to reasonable and necessary support for people in rural and remote areas

Four Practical Design Fund projects explored the additional challenges faced by people with disability in rural and remote areas. As a result, the Council recommends that:

  1. The greatest possible flexibility is applied in considering the reasonable and necessary supports of a participant in rural and remote areas. This includes supports that assist the participant and supports to enhance family capacity and resilience.
  2. Further work is undertaken in relation to reasonable and necessary for travel
  3. Where sustained benefit can be delivered via remote technology, reasonable and necessary support includes the purchase of appropriate technology.
  4. Specific capacity building opportunities are designed for people in rural and remote areas. In addition, it is essential to enable equitable access to other opportunities by meeting the real costs of participation including family care, travel and accommodation.

Recommendations in relation to other NDIS responsibilities

12. Build the capacity of people with disability and families

Capacity building of people with disability and families is one of the key strategies under NDIS responsibility that can address some of the societal and service barriers that inhibit opportunities for an ordinary life. This is because capacity building provides the possibility of giving people a vision of an ordinary life that can act as a driver of change in demand in the service system and in society. In addition, demand for an ordinary life can reinforce the view that a life lived in services, surrounded by paid staff is not an ordinary life. This is a message critical for the sustainability of the NDIS.

The Council recommends

  1. The urgent implementation of the Disability Support Organisation (DSO) initiative.
  2. That the NDIA works with Disability People’s Organisations and advocacy organisations to co-design a national infrastructure to ensure that capacity building is an ongoing responsibility of the NDIS rather than a short-term project based strategy.

13. Local Area Coordination

Local Area Co-ordination (LAC) is a key NDIS strategy to assist people with disability to be included in their communities. Council notes that in rural and remote areas, people with disability and families have sought a more active role in community development to support the emergence of local networks and self-help initiatives. Its continued development and refinement in the lead up to full Scheme transition will support maximum impact.

The Council recommends that the Agency consider whether alternative arrangements are required for rural and remote areas.

Other targets for change in building an ordinary life

14. Risk enablement

The current service approach to risk is increasingly placing barriers to an ordinary life of people with disability. Service providers are reluctant to share risk with consumers and reluctant to even discuss the issue of risk and safeguards in forums with consumers. As the major future funder of supports, the NDIS is well placed to facilitate discussion between providers and consumers on the issue of risk in an effort to reduce the negative impact current risk management is having on choice and control of consumers.

The Council recommends that the NDIA facilitate discussion between peak service providers, representatives of people with disability, and advocacy and capacity building organisations with a view to supporting moves to a framework of risk enablement.

The Council notes that it intends to provide its own advice on best practice approaches to ‘reasonable risk’ in early 2015.

Section 1 Introduction

‘Reasonable and necessary support’, a key concept in the NDIS, is the nature and quantum of assistance to enable a participant to pursue goals and aspirations. Objects 1 (a), (c) and (e) of the NDIS Act begin to frame the nature of ‘reasonable and necessary’. The reasonable and necessary support must: (a) give effect to Australia’s obligations under the UNCRPD, (c) support the independence and social and economic participation of people with disability and (e) enable people with disability to exercise choice and control in pursuit of their goals and in the planning and delivery of their supports.

The general principles in section 4 further our understanding, requiring that reasonable and necessary support be provided for people with disability to pursue their goals and maximise their independence (11(a)) to live independently and to be included in the community as fully participating citizens (11(b)) and develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment (11(c)).

The support must meet six specific criteria which are contained in section 34 of the NDIA Act.

This paper brings together a body of work of the Council to provide guidance to the NDIA, participants and the Australian community about how an ‘ordinary life’, consistent with the objectives and principles of the NDIS Act could be used to guide what is reasonable and necessary support.

The paper will:

  • Explore enablers of an ordinary life by summarising literature about promoting independence, genuine community engagement and a good life to identify signposts of an ordinary life to which the NDIS must assist participants to aspire.
  • Explore barriers to an ordinary life at the societal, service and individual levels as well as identifying barriers that could be addressed by the NDIS.
  • Identify special considerations to recognise and compensate for challenges faced by ATSI peoples, CALD and people living in rural and remote areas.
  • Identify what an ordinary life might look across the lifespan and in specific domains of life.
  • Explore the extent to which the NDIS cluster structure could be used to promote supports that build an ordinary life; and
  • Conclude with general recommendations about reasonable and necessary support and other areas of provision over which the NDIS has responsibility.

Section 2 Enablers of an ordinary life

The psychologists Abraham Maslow[1] and Martin Seligman provide a framework for consideration of an ordinary life. Interestingly, both wrote about a ‘good life’ because outside the frame of vulnerable people who need government funded support, they had the confidence to aspire for more than ordinary. The lives of people with disability, however, start from a lower base – a life lived in services. This means that the first aspirations are for the ordinary – the aspects of life others take for granted. However, understanding factors that enable a good life will help guide what is needed for an ordinary life.

Maslow believed that individuals possess a set of intrinsic motivations that are hierarchical. A person has to meet his or her lower level (basic or deficit) needs prior to being able to ascend the hierarchy to achieve the highest order need, which Maslow described as self-actualization.

Maslow’s hierarchy of needs

  1. Self-Actualization
    • Pursue talent
    • Creativity
    • Fulfilment
  2. Self-Esteem
    • Achievement
    • Mastery
    • Recognition
  3. Belonging
    • Friends
    • Familiy
    • Community
  4. Safety
    • Security
    • Shelter
  5. Physiological
    • Food
    • Water
    • Warmth

Maslow's heirarchy of needs diagram

The deficiency, or basic needs are said to motivate people when they are unmet and the longer they remain unmet, the stronger the motivation to fulfil them. Maslow argued that without satisfaction of one’s basic needs for physiological security, safety and belonging, one could not achieve self-esteem, an essential prerequisite to self-actualization.

Thus for Maslow, a good life comes from meeting one’s basic needs (that include the need for friends, family and community as well as for achievement, mastery and recognition) in order to fulfil one’s potential.

Psychologist Martin Seligman[2], leading writer in Positive Psychology, frames a discussion on a good life through the prism of happiness. Seligman describes happiness as having three dimensions that can be cultivated: the ‘Pleasant Life, the Good Life and the Meaningful Life’. The ‘Pleasant Life’, experienced as positive emotions, is realized if we learn to savour and appreciate such basic pleasures as companionship, the natural environment and our bodily needs. He argues that we can remain stuck at this stage or we can go on to experience the ‘Good Life’, which is achieved through discovering our unique virtues and strengths and employing them creatively to enhance our lives. Seligman describes this as the engaged life and research demonstrates this is enhanced by positive relationships, a sense of belonging and involvement in activity that offers a challenge.

According to modern theories of self-esteem[3], life is only genuinely satisfying if we discover value within ourselves. One of the best ways of discovering this value is by nourishing our unique strengths in contributing to the happiness of fellow human beings. Consequently, the final stage of happiness according to Seligman is the ‘Meaningful Life’ in which we find a deep sense of fulfilment by employing our unique strengths for a purpose greater than ourselves.

The importance of relationships

Relationships stand out as a significant contributor to health and wellbeing from multiple disciplines. Studies of older people may be particularly relevant, with the finding that social engagement and relationships are associated with health and wellbeing despite the presence of chronic health conditions, declining health and lower rates of being partnered.[4]

Research on promoting independence also reveals the critical importance of relationships in the formation of identity.[5] The stories people tell reveals how they shape their identity and that the stories are made possible by the networks to which they belong. Whilst young people with disability have the same hopes and aspirations as their peers without disability they have less opportunity to develop social networks and less opportunity to develop stories or narratives of themselves that draw on a wide range of resources and social interactions.[6]

Hence young people with disability have fewer opportunities to develop identity narratives that enable them to negotiate their way, as much of this social interaction is mediated by third persons (either a carer or family member). Their reduced social networks inhibit the development of identity and independence.

The importance of belonging

‘Belonging’ features in all understandings of a ‘good life’. Maslow argued it was half way up the hierarchy of needs, a requisite once the most basic needs had been met. Belonging is critical for identity formation, providing the stories that shape who we are. The South Australian Learner Wellbeing Framework[7] includes positive relationships, feeling safe, connection and belonging as protective factors that influence wellbeing and student engagement within education and care setting. The absence of a sense of belonging, seen in poor connection to site, ineffective behaviour management and bullying are identified as risk factors.

Belonging and community engagement are associated with improved health and wellbeing, increased learning and increased productivity in research in relation to older people and in the fields of education and work.

The importance of economic participation

Health and wellbeing are consistently shown to be associated with employment with longitudinal studies demonstrating that employed people report significantly lower levels of health disorder than students and the unemployed.[8] Marmot’s work for the World Health Organisation[9] on social determinants of health confirm these findings.

However, the health consequences of employment and unemployment are directly contingent upon quality of work. Unsatisfactory and insecure jobs do not provide the same benefits in relation to health and wellbeing. Marmot shows that the health effects start when people first feel their jobs are threatened even before they actually become unemployed. This shows that anxiety about insecurity is detrimental to health. Job insecurity has been shown to increase effects on mental health (particularly anxiety and depression), self-reported ill health, heart disease and risk factors for heart disease. Because very unsatisfactory or insecure jobs can be as harmful as unemployment, job quality is important.[10]

The importance of a challenge

Research in brain theory recognizes that deeper learning occurs when young people are provided with experiences and environments that encourage active involvement with their learning. This is confirmed by Koen and Duigan (2008)[11] who found that students are more likely to be involved in learning activities which are challenging, relevant and meaningful and which are tailored to their interest, strengths and aspirations. Stokes et al.[12] confirm this with research that demonstrated that optimal learning occurs when people take on a task that offers a challenge but sits beyond their existing range of skills, creating a learning opportunity.

Seligman recognises the importance of a challenge in achieving an engaged or good life. He believes discovering our unique virtues and strengths and employing them creatively to enhance our lives provides a challenge that improves the quality of life. Challenge that contributes to a purpose greater than us and to the happiness of others is a feature of a meaningful life.

Independence

Independence is a concept that is highlighted in the NDIS legislation. In the context of disability, independence does not confine itself to such traditional criteria as living in one’s own home or being employed. The UNCRPD emphasises that independence for persons with disabilities encompasses:

  • individual autonomy
  • the opportunity to be actively involved in decision making processes, and
  • the opportunity to access the physical, social, economic and cultural environment.

Rock (1988)[13] argues “Independence for young people with disability means having choice and control of their life and their environment”.

It is important to balance independence with the basic need to be valued and loved, recognising that relationships with people who care about (not necessarily care for) an individual provide the most significant safeguard for a vulnerable person. As a result, this paper argues that independence is best achieved in equal valued partnership with others, i.e. as interdependence.

Three themes emerge from the literature that focuses on factors that impact on opportunities for independence: identity development, resources and support and attitudes.[14]

Research about the importance of networks in shaping identity has been identified above. Opportunity for meaningful decision-making is another critical element in the development of identity but research has shown that young people with disability ‘lack voice’ in decisions about their lives.

A number of studies identify family support (attitudes and material resources) as the single most important contributor to a young person being able to maximize independence and transition into adulthood. The general attitudes of society, however, continue to be a barrier to independence whereby stereotypical assumptions and low expectations make people with disability feel invisible, not respected and excluded.

Research affirms that the goal of independence requires that people be supported to maximize their self-determination and self-direction, be supported to have meaningful choices, make meaningful decisions about their life and have access to the same opportunities in their physical, social, economic and cultural environment as their peers without disability.

Common themes across the literature

The literature identifies a number of themes associated with positive health and wellbeing and features of the ordinary life to which we all aspire. Earlier the dilemma between aspiring to a good life and an ordinary life for people who need government funded support was noted. People with disability were described as feeling nervous about asking for a good life lest ‘good’ conflicts with sustainable. Interestingly, this literature demonstrates that the features of a good life come from things that ‘money can’t buy’, including:

  • positive relationships
  • a sense of belonging
  • individual autonomy
  • active involvement in decision making
  • active engagement in the physical, social, economic and cultural community
  • using our unique strengths in ways that provide a challenge, and
  • making a contribution.

Enablers of an ordinary or a good life come from the approach used in the reasonable and necessary support, not the quantum of that support itself.

The enablers of an ordinary life in relation to the NDIS Act

The NDIS legislation provides the foundation to enable Australians with disability to aim high under the framework of the UNCRPD. The guiding principles confirm that people with disability have the same rights as other members of the Australian society to ‘determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacities.’ The enablers provide evidence-based guidance as to the path most likely to reach positive outcomes reflective of their goals and aspirations.

The Council recommends that reasonable and necessary support should facilitate the enablers of an ordinary life, namely positive relationships, belonging, achieving autonomy, active involvement in decision-making, opportunities for challenge and contribution. This should be facilitated through conscious attention to the enablers in planning conversations, capacity building opportunities, and in service provision.

Section 3 Barriers to an ordinary life

Societal barriers

A lack of social inclusion and multiple barriers to meaningful participation in the community were the most frequently raised issues in the submissions and consultation of National People with Disabilities and Carer Council reported in the Shut Out Report (2009).[15] Of the submissions, 56 per cent identified exclusion and negative social attitudes as critical issues,[16] suggesting that there are still widespread misconceptions and stereotypes informing the attitudes and behaviour of service providers, businesses, community groups, government and individuals.

Negative attitudes and misconceptions are often built on a view of disability as tragedy and while almost everyone would avoid its challenges, such attitudes have a profound impact on the relationship others extend to a person with disability. Misconceptions create a view of people with disability as dependent clients who need to be cared for rather than citizens who want the same basic things as everyone else and may need some assistance in order to contribute. Misconceptions turn the unique role and authority of parents into a status of carers that confuses people who deeply love and care about a person with people who are paid to provide service (and often do not care a great deal).

The built environment continues to be a major barrier to an ordinary life for many. Of the Shut Out Report submissions, 27 per cent indicated that the lack of access to buildings and facilities is a barrier to full participation, while 29 per cent identified a lack of access to transport as a significant barrier. Whilst it is not the responsibility of the NDIS to overcome these barriers, their existence provides additional challenges for reasonable and necessary support for an ordinary life.

Barriers from the service system

More than half of the submissions to the Shut Out Report indicated that services and programs act as a barrier to, rather than a facilitator of, their participation.[17]

Learned dependence created through inappropriate and often excessive use of paid support can be a significant barrier to an ordinary life.

Whilst the service and education systems talk about promoting independence, there are many practices that promote dependence. Old style early intervention often left parents with the message (often unspoken) that children learn best in one to one interaction with a skilled adult. The value of environmental learning from peers, from interaction with family and from free play was underplayed. It led many parents to seek wrap around support (from teachers’ aides) in early childhood settings and in school. Whilst this is less the case in contemporary practice, the fact that most early intervention continues in segregated settings contributes to parental demand for full time support that gets in the way of forming relationships with peers and moves to independence.

The vast majority of schools, both regular and special have a tendency to velcro staff to students creating learned helplessness and dependence and thwarting the development of natural networks of helpful friends. Whilst some students do need significant support, that support must be crafted very carefully in order to facilitate opportunities for other children to interact and assist where necessary. Enabling children with disability to learn to appropriately ask their friend or classmate for assistance is a skill of independence that cannot be acquired if adults surround a child.

Disability services also provide support in ways that promote dependence. The much sought after individualised funding is too often used as a paid friend with whom a child, young person or adult can share an outing. Whilst pleasant at the time, paid friendship promotes dependence and only creates the demand for another slot of paid friendship. Where support workers are guided by expert facilitation and trained to understand their role as life facilitators rather than paid friends, their efforts are much more likely to lead to opportunities for relationships with community members and a sense of belonging. This is a necessary underpinning to enable individualised support to foster an ordinary life.

Service models that group people with disability significantly impede opportunities for an ordinary life. Group homes and day programs have developed under the guise that people with disability are better off with ‘their own’ and because limited imagination anticipated that all support had to come from paid workers. Research affirms better quality of life without necessarily additional cost when paid support is used to complement informal support of family and friends to enable people, including those with high support needs, to live in their own homes and enjoy valued roles in the community. However, what is often not recognised in funding formulae is that many people with disability do not easily form relationships with people who want to play a role in their lives and therefore investment in the development of informal support is required in order to enable this type of lifestyle.

The attitude of services to risk has a major impact on opportunities for an ordinary life. Fear of work health and safety claims have led services to avoid risk rather than mitigate risk through prudent planning and safeguarding. Ordinary activities become constrained as common sense gives way to restrictive processes robbing people of ordinary opportunities for a rich life.

Barriers in the individual and the family

The attitudes of many people with disability and their families are shaped by negative experiences of being segregated, excluded, marginalized or ignored. This reinforces low expectations and often leads to the self-fulfilling prophesy of lives deprived of meaning and contribution.

Where people are not exposed to different ways of doing and to different ways of living, they are deprived of opportunities to see that despite significant disability, people can lead independent valued lives included in their communities. Capacity building is the key.

Opportunities for the NDIS

Quality plan implementation support

Participants who have moved from the NSW self-managed Community Participation[18] Program to the NDIS in the Hunter Trial Site have been disappointed. It appears to participants and their services that in general, the NDIA only pays for direct support and makes no active provision for the information and skilled facilitation they valued under shared management. Families perceive that in general the skilled facilitation was responsive to their needs and abilities and enabled them to:

  • facilitate life planning from aspirational goals to the micro steps required to achieve an outcome
  • take responsibility for staff recruitment, support and supervision
  • pay for the professional development of staff, and
  • undertake support coordination.

Most people with disability and families in the Hunter trial site have not been aware that these are ‘services’ they need to request and anecdotal evidence indicates that participants looking for infrastructure to underpin direct support have been allocated as little as ten hours of support coordination per annum.

In an insurance framework, quality plan implementation support represents an important upfront investment that will lead to improved and more sustainable outcomes for participants.

The Council recommends that the quality plan implementation aid required to provide life building support for an ordinary life is considered an essential element of reasonable and necessary supports.

Ensure opportunities for participants to select their own staff

One significant change for these participants is that when staff that have been personally selected leave, the participants are prevented from advertising[19] and are forced to use staff of the service provider rather than individual selection. Participants describe this impact as devastating when allocated staff do not share their interests and lack the skills to facilitate relationships rather than be a paid friend.

The Council recommends that the NDIA considers how participants could be supported to select their own staff, instead of relying on service providers to do this on their behalf.

Enable participants to purchase training in specific skill sets for staff

Participants value the opportunity to provide the training for support staff that prepares them for the roles desired. Training in SRV (Social Role Valorisation) and Active Support, for example, are not yet core competencies of support workers and even if they were, many participants prefer to employ people who have never worked in the disability sector, believing it is easier to teach skills to people with solid values and shared interests than to work with staff who do not share interests. The lack of provision for staff training is a serious barrier for some participants.

The Council recommends that in developing the workforce strategy, and in undertaking further work on the efficient price, that consideration be given to how targeted training can be provided to staff that require a specific understanding or skill in order to meet the support needs of a participant.

Planning within NDIA

Planning assists participants and their families to move from clients of a capped, crisis oriented state system to citizens purchasing reasonable and necessary supports to meet their disability support needs.

The planning process must help a person think about goals, and aspirations, and operationalise them through strategies ultimately recorded as a statement of supports. Many participants will never have considered having goals and aspirations, and considering this in the company of a stranger (consisting of an NDIA representative) would not necessarily help to stimulate conversation.

Many participants will never have been asked to think about goals and aspirations before and this will be made more challenging as their guide in this exploration will be a stranger from the NDIA.

A constraint on the NDIS planning process is the pressure of time. Signoff of the plan is not just about activating support for the individual. It is also about enabling the transition of funding from states and territories into the NDIS. As so many people need to make that transition, one of the outcomes reported by the Scheme is the pace of transition – the number of days to determine participant eligibility and the number of days for the approval of the plan. Whilst these indicators reflect understandable pressures for the Scheme, they conflict with a primary concern for the best interest of the individual.

The Council has expressed the view that the planning process as currently framed is not likely to achieve the best opportunity for an ordinary life; that provision for life planning outside the Agency is more likely to facilitate the development of informal support, which is critical in reducing participant reliance on paid support.

The Council recommends that every participant should be provided with access to support for life planning, the results of which will be submitted to the NDIA for consideration as a plan noting that in accord with the NDIS Act, the NDIA would need to ensure that the supports aligned with the participants’ goals and aspirations.

Consider the infrastructure necessary to provide life-building support

Section 7 in the paper argues that the current organisation of support clusters does not promote planning that facilitates the enablers of an ordinary life. The information from pricing clusters provides little or no guidance to help planners assist participants to think about how they can achieve positive relationships and a sense of belonging; individual autonomy; active involvement in decision making; active engagement in the physical, social, economic and cultural community; and how participants can use their unique strengths in ways that provide a challenge and enable them to make a contribution.

The reorganisation of this information is important to maximise aspirations and facilitate opportunities for an ordinary life.

Consider innovative ways that supports can be provided, including through home share arrangements

Whilst the Agency has increased flexibility of provision by bundling a number of supports, there are other innovative practices that facilitate opportunities for an ordinary life and also provide value for money.

The Council recommends that the NDIA considers innovative ways of enabling support to be provided. For example, the Council recognises existing practice whereby people with disability encourage individuals without disability to live with them and provide informal supports in return for subsidised rent.

While the Council supports this approach, it notes that it is always the responsibility of the participant to meet the costs of their own rent. Council will undertake further work on this issue in 2015.

Building the capacity of people with disability and their families

This paper has canvassed barriers to an ordinary life at the societal, service and individual level. Most are outside the responsibility and control of the NDIS. Capacity building of people with disability and families is, however, the single most powerful step under the control of the NDIS that can assist in removing the barriers.

Parents who have a vision of an ordinary life for their sons and daughters will have a vision that assists them to argue against models of service provision that take them away from the path to an ordinary life. They will argue against, rather than for, full time teachers aides, understanding that teacher aides often create dependence and impede opportunities for friendship and help from classmates. They will argue for core competencies in support workers to help facilitate relationships for their family member with disability rather than being content with a paid friend.

Much has been written about the importance of capacity building.[20] The fact that current capacity building is funded through non-recurrent initiatives of state and territory governments has a serious impact on opportunities for an ordinary life and is seen in the continued demand for ‘more of the same’ in NDIS packages. Without capacity building, the NDIS will enable participants to be consumers, rather than dependent clients, of services who have some choice but limited opportunity to avail themselves of the choice and control anticipated in the NDIS. It is only capacity building that will support people to be active citizens exercising choice and control and in engaging in social, economic and political life.

The Council recommends

  1. The urgent implementation of the Disability Support Organisation (DSO) initiative.
  2. That the NDIA works with Disability People’s Organisations and advocacy organisations to co-design a national infrastructure to ensure that capacity building is an ongoing responsibility of the NDIS rather than a short-term project based strategy.

Other targets for change in building an ordinary life

  1. Risk enablement

The current service approach to risk is increasingly placing barriers to an ordinary life for people with disability. Service providers are reluctant to share risk with consumers and to discuss the issue of risk and safeguards in forums with consumers. As the major future funder of supports, the NDIS is well placed to facilitate discussion between providers and consumers on the issue of risk in an effort to reduce the negative impact current risk management is having on choice and control of consumers.

The Council recommends that the NDIA facilitate discussion between peak service providers, representatives of people with disability, and advocacy and capacity building organisations with a view to supporting moves to a framework of risk enablement.

The Council notes that it intends to provide its own advice on best practice approaches to ‘reasonable risk’ in early 2015.

Section 4 Special Considerations for Aboriginal and Torres Strait Islander people

There is a growing body of literature about providing culturally appropriate services and supports to Aboriginal and Torres Strait Islander (ATSI) people and their communities. In the NDIS space alone there were six Practical Design Fund Projects (2013) that focused on ATSI issues including understanding indigenous concepts of disability, improving cross cultural understandings, developing carers groups and leisure activities, providing guidance to enable mainstream organisations to work effectively with ATSI people with psychiatric disability and brain injury and work to increase the number of indigenous people in remote communities who are trained as disability support workers.

Rather than including a brief commentary here, a specific piece of work is required to provide commentary on the additional considerations needed to ensure that reasonable and necessary support is framed and provided in ways that enable ATSI people with disability to thrive.

To summarise reflections from the Arafmi project that focused on indigenous families and carers of people with psychiatric disability in remote West Australian indigenous communities:

The NDIS framework needs to be highly flexible, based on person centred planning and adaptable to the wisdom of local kinship, social and cultural imperatives including traditional practices. Indigenous people need to be included and trained in real decision making when it comes to applying and managing the NDIS for individuals with psychiatric disability within their communities. The issue is not always about the individual but the contextual framework of the indigenous community and their traditional values and belief systems.

The NDIS needs to tap into the complexities of indigenous culture, existing sector knowledge and expertise and to identify practical solutions and innovative approaches We have to re-think our entire approach to these challenges and we should be open to this. The risk is, if we don’t, the scheme may fail indigenous Australians with disability, their carers and families, and perhaps other people with disability Indigenous ‘ownership’ of the NDIS is imperative if the aims and objectives of this scheme are to be achieved.

The reflections concluded with a quote from Champion, A. 1996 Emotional and Social Wellbeing, Perth WA:

It is about reclaiming our tribal autonomy, authority and identity as both local tribal people and indigenous people the environment, our land, our place of belonging-ness, our stewardship roles and responsibilities, our healing processes .To do this, the local traditional customs, protocols and practices must be observed and adhered to all these things constitute our physical/spiritual/emotional/mental wellness and well-being.

Recommendation

The complexity of issues related to reasonable and necessary for ATSI populations warrants its own work. The Council notes that the NDIA is currently delivering services in remote areas of South Australia and the Northern Territory, and is developing an indigenous strategy.

The Council recommends that the NDIA:

  • brief the Council on innovative strategies that have been adopted in ATSI communities, and
  • consult the Council on the development of the indigenous strategy.

Section 5 Special considerations for people of culturally and linguistically diverse (CALD) background

Cultural responsiveness consists of the framework for planning and delivering services that are respectful of, and relevant to, beliefs, practices, culture and linguistic needs of individuals and communities. Literature on the topic of cultural responsiveness and cultural safety in service provision for people with disability recognises that disability issues have a significant set of cultural overlays that impact on all aspects of disability awareness and service relevance and response.

Key themes include:

  • Disability is a sensitive issue in many communities with varying degrees of stigma that negatively impacts on, for example, receptiveness to messages about disability, lifestyle expectations and service access.
  • Disability has different meanings in different cultures and this can impact on the way in which the person is treated and supported.
  • Service expectations and access may be influenced by previous experiences with disability in different cultural contexts. This learned behaviour might have an impact (either positive or negative) on how disability services are understood, seen as relevant or used.
  • Culture and language specific pathways may either allow greater access because of linguistic and cultural relevance or may impede access due to prevailing stigma around having a person with disability in the family or community. This means that for some, ethno-specific services may be a preferred, but for others, assistance outside the community is desirable.
  • Providing support for a person with disability in many CALD communities is seen as the responsibility of family members and this may impact on perceived need for external support or services.
  • The capacity of the individual or family to access services may be restricted due to limited awareness of available services, limited skills to receive services and low levels of confidence in expressing preferences or questioning service quality.
  • These factors compound, causing people of CALD background to seek support at the point of crisis when needs have become complex and can no longer be sustained through informal care.

The cultural responsiveness of services may be a significant barrier to people getting the assistance they need. It is the responsibility of the NDIS to develop and implement a cultural responsiveness framework that addresses issues of:

  • systemic capacity through the development of policy objectives, procedural requirements, resource supports and monitoring mechanisms to support culturally responsive service provision, and
  • individual NDIS staff member competency to ensure that all NDIS staff have the knowledge and skill sets necessary to understand and interact with CALD people with disability in family and community settings and have the attitude to develop relationships based on mutual respect.

Once again, it would be difficult to provide a small commentary on the additional considerations required to ensure that reasonable and necessary support is provided in ways that enable CALD people with disability to thrive. A specific piece of work is required.

Recommendation

The Council recommends that the NDIA undertake further work to understand reasonable and necessary support for people of culturally and linguistically diverse backgrounds. The Council notes that the NDIA has already commenced this work.

Section 6 Special considerations for people in rural and remote Australia:

...When you get respite or you get support from a disability service, it is for that one child. So if you have got two kids at school, the kid with disability can be picked up and the other one can't, so that doesn't support a family at all.

We had a dietician make an appointment to see me about a month in advance. We rearranged our whole lives for this appointment. Then they rang and said ‘Oh, we don’t feel like coming to Tin Can Bay’. They didn’t reschedule the appointment and we ended up having an over the phone talk. They said, ‘There’s nothing we can do for you’. It was a total waste of our time.

Transport and travel costs are a huge burden for rural families e.g. petrol to get to appointments. The Patient Travel Subsidy Scheme is too burdensome, too hard to access and too many forms to fill in and only covers some travel costs.

I have had the Better Start funding. It costs me $125 gap fee for a psychologist session – and that is for a phone consultation only. I couldn’t afford it. And my kid was trying to grab the phone and hang it up so I would give them my attention and play with them, not talk on the phone [Cooloola Cove].

In the first year, our baby required specialist visits and early intervention. Each specialist visit entailed me packing two small babies on to a plane, and spending a week 3500 km away from home. Thankfully PATS covered the cost of this, but it was still a gruelling and disruptive trip. I was lucky in that I had family who could accommodate and assist me in Perth, but I know of many others – who have had the same experience, and found themselves alone, vulnerable and without financial and social resources. For single parents this situation was far worse as the PATS didn’t cover the cost of another child, and in some cases there was no one to look after an older sibling.

These are the voices of families of people with disability who contributed to a roundtable organised by the National People with Disability and Carer Alliance and the National Rural Health Alliance to discuss equitable service delivery to people living with a disability in rural and remote areas.

A number of Practical Design Fund projects focused on issues related to geographical isolation reporting on:

  • The profound interconnection of people with disability and their family member with disability:

It’s not only about the person with disability in rural and remote areas; it’s also about their families, the effects it has on siblings, for example, and on relationships and single parent families.

  • The frustration with ‘fly in fly out’ and ‘drive in drive out’ services, drawing on experience in Meekatharra and nurses with the Flying Doctor Service to argue that ‘the longer the stay, the better the outcomes’.
  • The amplification of the burdensome effects of disability with the challenges of remoteness.
  • The contrast in quality and availability of disability support services between major cities and remote areas.
  • The lack of capacity in over-stretched towns to deal with disability.
  • The transience of non-indigenous people in very remote areas that makes it very difficult to form support networks that would help with the raising of a child with disability.
  • The transience of service staff that impacts on the quality of care and relationships within therapy teams.
  • The isolation that comes from a lack of services including GP and counselling.
  • The lack of, and prescriptive nature of, respite services.
  • The lack of suitable alternative activities for people with disability.

These challenges translate into key messages for ‘reasonable and necessary supports’ and the general operation of the NDIS including:

1. Flexibility

The strongest message related to the critical importance of flexibility and pragmatism in the application of rules; that common sense must trump rules and bureaucracy every time.

The additional level of flexibility is required in rural and remote areas because the lack of formal services can result in the unrelenting pressures on families in caring for a person with disability. People report that a simple lack of flexibility has made life so much more difficult for people than what it need be. Families argued strongly that they know what will make a difference and their views should be respected and supported, utilizing local capacity in innovative and in impromptu ways.

Reports of seminars that enable people to discuss the challenges of living in geographically isolated areas provide a wealth of examples of ways to support a family, some of which are covered by NDIS and state service policy and practice and some of which are not. Examples include:

Minding the siblings:

A family may need to take their child with disability to a major city for a medical consultation, minding the child’s siblings becomes an issue that can be solved by a flexible package that enables a local person to be paid to perform this role.

Somebody to cook a meal:

...We have had access to allied health services and we have had access to health but that is not actually what we need. When my daughter wakes at 2 a.m. and screams for five hours and then spends many hours screaming during the day, I have no capacity to do my housework, no capacity to do what my son needs; so sometimes what I need is housework. Maybe somebody will cook a meal for me. Respite, God help us, yes, absolutely, we need that Sometimes we need really simple stuff. Child-care, for example, we were accessing, three different child-care services for my daughter because the child-care services weren't able to cope with her area of disability.

Money to spend as they chose to support their family:

In Queensland we had what was called the flexible family support until the government took the "flexible" out of it and it became "family support". It provided just a basic amount of money for families to spend as they chose to support their family; not just the child with a disability, but siblings as well, so you could spend on house cleaning, whatever it took to keep the families together. And Queensland has defunded that now.

Recommendation

The Council recommends that the greatest possible flexibility be applied in considering the reasonable and necessary supports of a participant in rural and remote areas. This includes supports that assist the participant and enhance family capacity and resilience.

2. Transport

Distance to access services, travel costs and lack of transport options were all identified as significant issues by many participants.

Transport and travel costs are a huge burden for rural families e.g. petrol to get to appointments. The Patient Travel Subsidy Scheme is too burdensome, too hard to access and too many forms to fill in and only covers some travel costs.

We need a good transport system, not taxis, that you could ring and book to take you where you need to go when you need it. Taxis are too expensive out here. And that taxi voucher application form is rubbish. Too complicated, 11 pages of paperwork are too much! GPs are spending all their time filling in forms. Simplify the system and make it easier to access.

I need help affording the travel to services. Keeping a car on the road is very difficult.

The NDIA makes provision for travel in rural and remote areas. It is too early to determine its impact at current levels.

Recommendation

The Council recommends that the NDIA review provision for travel in the light of experience and advocate for a reduction in red tape associated with the Patient Travel Subsidy Scheme (PTSS).

3. Technology

Using Practical Design Fund assistance, Autism Queensland explored the use of technology in a small study designed to extend early intervention services for children with Autism Spectrum Disorder (ASD) in rural and remote locations in Queensland.

The study found that remote technology worked well for some families resulting in reduction in costs, increased flexibility in program format, provision of regular support, reduction in stress, increased convenience of being assisted in one’s own home, reduced time and travel, up-skilling and education and the opportunity for team connection through the capacity to simultaneously ‘bring everyone together’, ensuring that everyone on the child’s team was ‘on the same wavelength’.

Remote technology did not however work for all families. Face to face program delivery was considered an essential pre-requisite and remote technology was not considered suitable for families in crisis or those who required more intensive support. Its drawbacks for people and therapists who did not have particular technology or confidence in their technology was noted as was the need for substantial information technology (IT) support to trouble shoot IT related problems.

However, overall, technology was seen as a viable option to increase access to service provision for some people.

Recommendation

Where sustained benefit can be delivered via remote technology, reasonable and necessary support includes the purchase of appropriate technology.

4. Empowering individuals

There was concern to ensure that isolation did not prevent people with disability and families from gaining a new vision of what is possible in contemporary Australia. The availability of subsidies and funding to cover the costs of conferences, informal networking, linking groups and sharing resources were thought to be important. It was noted that meeting the real costs of participation in capacity building forums might include transport to and from the venue, accommodation and participation support.

Recommendation

The aforementioned specific capacity building opportunities are designed for people in rural and remote areas. In addition, it is essential to enable equitable access to other opportunities by meeting the real costs of participation including family care, travel and accommodation.

5. Role of Local Area Coordination and capacity building in communities

Many participants have experience of state Local Area Coordination (LAC) and believed it was a vital ingredient in building better lives for people in rural and remote areas. People acknowledged that the effectiveness of the LAC model was relationship based and hence key elements of enabling success included basing LACs in smaller rural communities not just regional centres, ensuring areas are of a manageable size and enabling a caseload that supported effective assistance.

The preference for services and supports that are local, flexible and small was a clear message from the PDF project in north Queensland. A Local Area Co-ordinator could play a pivotal role in supporting the emergence of local, flexible, small collectives/networks and self-help initiatives.

Recommendation

The Council recommends that the role of the LAC continue to be trialled and refined in the lead up to the Full Scheme transition.

The Council recommends that the Agency consider whether alternative arrangements are required for rural and remote areas.

Section 7 An ordinary life across the lifespan

The lifespan approach recognises that people have the potential to grow and develop at any stage of life and that the growth and development is influenced by biological, cognitive, socio-emotional and contextual factors. It is a most appropriate framework for considering support for people with disability and is used in this report.

The lifespan approach[21] guides the NDIS to enable each participant to positively experience the key features of a life stage that their peers without disability take for granted. It provides a framework to respond to the contextual and historical circumstances that shape a participant’s life story as well as to the life changing events that have had a significant influence on making the person who they are today.

Appendix A examines reasonable and necessary support for people with disability in cohorts of birth to 2, 2–5, 6–12, 12–15, 16–25, 26–55 and over 55. The ordinary life analogue highlights the milestones and goals of peers who do not have a disability since both the UNCRPD and research confirm that people with disability want and have a right to the same opportunities as their peers without disability. The difference lies in the support required to achieve those aspirations. The tables of Appendix A outline goals, outcomes and supports to enable people with disability to lead ordinary lives typical of their peers in 21st century multicultural Australia.

This work has gone some distance to unpack support required. It will not have an impact on the lives of people with disability without additional work to strengthen each planning conversation to take these features into account.

Recommendation

That the NDIA undertake additional work necessary to operationalise this material for planners.

Section 8 Information about reasonable and necessary support in the organisation of support clusters

In developing this report a designated senior planner in Barwon was consulted in order to go through a number of client profiles and scenarios with a view to understanding the way in which the NDIA would respond to the requests for reasonable and necessary support. The planner used the document Support Clusters Definitions and Pricing for Victoria to clarify the nature of services and supports that may be provided.

The support cluster document is designed to estimate and approve the costs of individualised plans, providing information on maximum or benchmark prices of identified supports. Service providers have been required to register to provide services for specific clusters as described in the document.

The document indicates, ‘Planners should refer to the Guide to Understanding Funded Supports’.

It is important to stress that the document is designed for use by the NDIA, not by consumers but it does provide insights into the way in which the Agency understands and responds to requests.

The question of interest is the extent to which the organisation of support clusters could be utilised to promote planning that facilitates the enablers of an ordinary life. That is, do the descriptors and limited commentary of clusters and line items guide planners to help participants think about how they can achieve positive relationships and a sense of belonging; individual autonomy; active involvement in decision making; active engagement in the physical, social, economic and cultural community; and how participants can use their unique strengths in ways that provide a challenge and enable them to make a contribution.

The observations in Appendix B demonstrate that by and large, with an experienced senior planner, the services and supports enabled through the clusters have the capacity to assist participants to have an ordinary life. The clusters more or less enable the support necessary to build a vision, develop informal support, strengthen the skills of a participant, enable a participant to become a volunteer, overcome barriers, enable resource supported decision-making, promote health and wellbeing, facilitate community inclusion, respond to behaviours of concern and unplanned events and support a participant to take on responsibility for aspects of service provision.

The key challenge however is to organize the clusters and describe their elements in ways that promote people thinking about the enablers of an ordinary life. Much of the quality infrastructure required for an ordinary life comes from the cluster Assistance in co-ordinating or managing life stages, transitions and supports where support item names and their simple descriptors such as Co-ordination of supports, Life/transition planning and Mentoring and Peer support do not do justice to the breadth of opportunities they enable.

The Council believes that the information provided about services and supports (the current Support Cluster document) should be reorganised for the purpose of providing greater clarity about NDIS enabled supports to build an ordinary life. The Council suggests it may prove useful to frame cluster descriptors in terms of elements of life that a person would want e.g. increased informal support. This might encourage more people to ask for this assistance and reduce planner variability in allocating these supports.

Recommendation

The Council recommends that:

  1. There is an audit of guidelines on supports with consideration given to how these could be framed to enable participants to have an ordinary life.
  2. The information provided about services and supports (the current Support Cluster document) is reorganised for the purpose of highlighting life tasks and supports to build an ordinary life.
  3. The process of reframing information about supports is co-designed with people with disability, families, advocacy and capacity building organisations, service providers and the NDIA.
  4. Steps are taken to gain greater consistency in supports provided in a plan, especially access to support coordination to implement a plan.

Bibliography

Australian Government, Department of Health and Ageing, (2013) Staying Connected

Dept. of Education and Children’s Services, Gov of South Australia,(2007) Learner Wellbeing Framework (PDF 1.24MB)

Koen, S & Duigan (2008) “Forging Brighter Futures, paper presented a History and Future of Social Innovation Conference, Adelaide, 19-21 June

Maslow, A., (New window)

National Association for Self Esteem (New window)

National People with Disability and Carer Council (2009) Shut Out,

Rock, P., (1988) Independence: What it means to six disabled people living in the community, Disability and Society, 3(1), pp 27–35.

Seligman, M., (2002) Authentic Happiness: Using Positive Psychology to realise your potential for lasting fulfilment, NY Free Press

Stokes, H., (2012) Imagining Futures: Identity narratives and the role of work, education, community and family, Melbourne University Press, Melbourne

Stokes, H., Turnball, M. & Wyn, J., Young people with a disability: independence and opportunity: A literature review (PDF 474KB)

Appendix A1: Key features of lifespan for Babies and Infants - Birth to 2

Appendix A1: Key features of lifespan for Babies and Infants - Birth to 2
Issue Babies and infants birth to 2
Key features of life stage
  • Babies form attachments to consistent adults
  • Babies grow and develop through relationships and engagement with their parents and other caregivers in their family or community
  • Well supported families create home environments that provide rich learning opportunities for children
  • Informed families make better choices for their whole family
  • Babies and infants participate in growth promoting experiences both at home and in community such as playgroups and childcare and informal family and community activities
What are young children with disability doing?
  • In families that are more stressed
  • Developing at different rates
  • Attending lots of appointments
  • Attending early intervention
  • Less likely to be at playgroup, childcare
Expectation that specialist supports will
  • Be goal oriented and responsive: directed to the needs and goals of individual as they change
  • Be responsive and tailored to the needs of the individual
  • Guide development by supporting new learning to be incorporated into everyday tasks, routines and activities providing real life experiences
  • Support mainstream services so that learning is reinforced across all environments
Strategies to promote relationships and belonging
  • Capacity building for families to assist them to develop positive vision and a pathway
  • Address family issues that might hinder development of relationships
  • Use of informal care of grandparents, friends and babysitter
  • Contact with other families of children with similar needs
  • Participation in playgroups, childcare and other local informal networks
  • Inclusion of child in age appropriate family, cultural and religious practices
  • Contact with other families of children with similar needs
Strategies to enhance autonomy and decision making

Early intervention

Build on strategies to promote relationships and belonging through:

  • assistance to make choices (doll or block), and
  • support to take action to get choice
Challenge
  • Play with other children through informal care, playgroups and day care
  • Explore environment
  • Being asked to do tasks within skill range

Appendix A2: Key features of lifespan for children 2 to 5

Appendix A2: Key features of lifespan for children 2 to 5
Issue Children 2-5

Key features of life stage

  • Children grow and develop through relationships and engagement with their parents and other caregivers in their family or community
  • Children acquire language skills and impulse control
  • Well supported families create home environments that provide rich learning opportunities for children
  • Informed families make better choices for their whole family
  • Children participate in growth promoting experiences both at home and in community based settings such as playgroups and childcare and informal family and community activities

What are children with disability doing?

  • In families that are more stressed
  • Developing at different rates
  • Attending lots of appointments
  • Attending early intervention
  • Less likely to be at playgroup, childcare

Gap

  • Increased stress
  • Less connected to community
  • Early intervention
  • Need for information, vision and pathway

Expectation of specialist supports

  • To be goal oriented and responsive: directed to the needs and goals of individual as they change
  • To be responsive and tailored to the needs of the individual
  • To guide development by supporting new learning to be incorporated into everyday tasks, routines and activities providing real life learning experiences
  • To support mainstream services so that learning is reinforced across all environments

Strategies to enhance relationships and belonging

  • Capacity building for families to assist them to develop positive vision and a pathway
  • Address family issues that might hinder development of relationships
  • Use of informal care of grandparents, friends and babysitter
  • Contact with other families of children with similar needs
  • Participation in playgroups, childcare and other local informal networks
  • Inclusion in local preschool or day care
  • Inclusion of child in age appropriate family, cultural and religious practices
  • Contact with other families of children with similar needs

Strategies to enhance autonomy and decision making

Early intervention

Build on strategies to promote relationships and belonging through:

  • assistance to make choices (doll or block)
  • support to take action to get choice , and
  • support to understand consequences of actions

Strategies to enhance challenge and contribution

  • Play with other children through informal care, playgroups and day care
  • Explore environment
  • Being asked to do tasks within skill range
  • Attend childcare, preschool and school readiness activities
  • High expectations including that child will help others

Appendix A3: Reasonable and Necessary support for children birth to 5 and their families

Appendix A3: Reasonable and Necessary support for children birth to 5 and their families
Issue Goals Outcome Supports System

Reasonable and necessary support for children birth to 5

To reach developmental milestones

Children will gain functional, developmental and coping skills that are appropriate to their ability and circumstances

Children show evidence of self-determination in their everyday lives

Support to build a positive vision and a pathway

Tier 3

Early intervention

Tier 3

Support to coordinate health care needs

Health

Toy libraries

Community

To form attachments to consistent adults

To enjoy relationships with siblings

To live in well supported families that can create home environments that provide rich learning opportunities

Children participate meaningfully in family life

Babies and infants are integrated into everyday life of their families

Support to facilitate functioning family

Support for parents to care

Tier 3

Encouragement to use of informal care of grandparents, friends and babysitter

Planning

Tier 2 (ILC)

To engage with parents and other adults in their family and community

To participate in age appropriate family, community and cultural events

Children participate meaningfully in community life

Encourage inclusion in playgroups

Inclusion support in early childhood settings

Encourage family to include child in age appropriate family, community, cultural and religious practices

Culturally competent services

LAC

State and federal early childhood services

Vulnerabilities

To build congruence in everyday family life between needs of the child with disability and needs of other family members

To strengthen integration of child with disability into their everyday family life and the community more generally

To minimise concern about the effect of the child with disability on siblings both now and in the future

Well supported family that can care for all their children

Avoidance of out-of-home placement and/or family breakdown

‘Whatever it takes’ supports to facilitate a healthy well-functioning family

Behaviour support for child

Encourage and assist to establish use of informal care of grandparents, friends, babysitters

Tier 3

Support for inclusion in childcare

Cwlth & state govts

LAC

Reasonable and necessary support for families

To support children to be ready for school

Children are ready to enter school and thrive

Capacity building

Tier 2 (ILC)

To understand their child’s development

To understands how their child is progressing

To have positive views of their child’s developmental progress and future

To support the child to participates in the traditions of the culture

Families understand their children’s strengths, abilities and special needs.

Information

Support to build a positive vision and pathway

Parent advocacy understandings and skills

Contact with families with children with similar needs

Tier 2 (ILC)

Early intervention

Tier 3

Encouragement to attend playgroups

All systems

Childcare

Cwlth &state govts, community

To advocate for services and supports for their child

To be able to identify their needs and know how to access available services and supports

To understand their rights and the rights of their child

Families know their rights and advocate effectively for their children

Parent advocacy and capacity building

Practical support to participate in capacity building

Tier 2 (ILC)

To understand the interventions needed to support the child

To know what they can do to support their child’s development

To feel capable in parenting their child

Families help their children develop and learn

Early intervention

Capacity building

Practical support to participate in capacity building

Tier 2 (ILC) and tier 3 early intervention

To feel confident to access services and community activities

To see themselves as partners with professionals

To feel in control in selecting services and supports that meet the needs of their child and family

To see themselves as equal and integral members of the team

To work in partnership with service providers to meet the needs of their child.

Families are able to gain access to desired services, programs, and activities in their community.

Capacity building

Early intervention

Practical support to participate in capacity building

No systems listed here?

To have people to call on for practical assistance as often as they need

To have people to call on for child care as often as they need

To have people to call on for emotional support as often as they need

Families feel supported

Address family issues that might hinder development of relationships

Encourage and assist to establish use of informal care of grandparents, friends, babysitters

Practical support

Support to build congruence in everyday family life between needs of child with disability and needs of other family members

Tier 3

Systemic approaches

Communities have a range of service options and facilities to respond to emerging needs of families in supportive ways

Communities value and welcome all members

Early intervention services promote inclusion

Tier 1 information

Communities are welcoming

LAC/local govt and Tier 2 (ILC)

Flexible work environments are responsive to the needs of parents of children with disability

Employment & Workplace Relations sector

Health and education professionals have high expectations and support inclusive path for all children

Health

Education

Tertiary training

Appendix A4: Key features of lifespan for children 6 to 12

Appendix A4: Key features of lifespan for children 6 to 12
Issue Children 6 to 12 or completion of primary school

Key features of life stage

  • Grow in independence
  • Attend local school
  • Increasing connection to peer group
  • Changed relationship with family

What are children aged 6-15 without disability doing?

  • Attend local school
  • Have friends
  • Play sport
  • Attend after school and vacation activities
  • Participate in local social and recreational activities
  • Get together with peers on the weekend

What are children with disability aged 6-12 doing?

  • In families that are more stressed
  • Developing at different rates
  • More involved with family members
  • Less likely to have friends
  • Less likely to be involved in out of school hours programs
  • Use specialised transport to school

Gap

  • Increased stress
  • Less connected to neighbourhood peers and community
  • Less clear vision and pathway

Expectation of specialist supports

  • To be goal oriented and responsive: directed to the needs and goals of individual as they change
  • To be responsive and tailored to the needs of the individual
  • To guide development by supporting new learning to be incorporated into everyday tasks, routines and activities providing real life learning experiences
  • To support mainstream services so that learning is reinforced across all environments

Strategies to enhance relationships and belonging

Strengthen relationships and belonging in family:

  • assist family to develop positive vision and a pathway
  • address family issues that might hinder development of relationships
  • encourage play with siblings and extended family, and
  • support the use of informal care of grandparents, friends and babysitter

Strengthen relationships with peers and in community:

  • identify strengths and interests as basis for relationships
  • strengthen social and relationship skills
  • encourage play with neighbours
  • children attend local school, after school and vacation programs with peers
  • support to participate in age appropriate family, cultural and religious practices, and
  • support inclusion in local sports and interest groups

Strategies to enhance autonomy and decision making

  • Support to make choices
  • Support to take action to bring choice to fruition
  • Support to understand consequences of actions

Strategies to promote challenge and contribution

  • High expectations at school and in all activities
  • Expect child to help others
  • Expect services/ activities to require child to do tasks appropriate to his/her skills

Appendix A5: Key features for children 13-15

Appendix A5: Key features for children 13-15
Issue Children 13 to 15

Key features of life stage

  • Grow in independence
  • Puberty
  • Secondary school
  • Increased risk taking
  • Changed relationships
    • experience strong pull of peer group
    • form new attachments i.e. dating, and
    • changed relationship with family

What are children aged 13-15 without disability doing?

  • Attend secondary school
  • Have friends including dating
  • Play sport
  • social networking and attend interest based groups after school and in holidays
  • Participate in local social and recreational activities
  • Get together with friends on the weekend

What are children with disability aged 13-15 doing?

  • In families that are more stressed
  • Developing at different rate
  • More involved with family members
  • Less likely to have friends
  • Gap after school as often unable to stay alone but few organised programs for secondary school students
  • Use specialised transport to school

Gap

  • Increased stress
  • Less connected to neighbourhood peers and community
  • Less clear vision and pathway

Expectation of specialist supports

  • To be goal oriented and responsive: directed to the needs and goals of individual as they change
  • To be responsive and tailored to the needs of the individual
  • To guide development by supporting new learning to be incorporated into everyday tasks, routines and activities providing real life learning experiences
  • To support mainstream services so that learning is reinforced across all environments

Strategies to enhance relationships and belonging

Facilitate positive adjustment of family relationships:

  • assist family to develop positive vision and a pathway
  • assist family to respond in more adult ways
  • address family issues that might hinder development of relationships
  • encourage friendship with siblings and extended family, and
  • reframe ‘babysitter’ support to age appropriate support

Strengthen relationships with peers and in community:

  • strengthen social and relationship skills
  • identify strengths and interests as basis for relationships
  • broaden networks and develop social and relationship skills
  • support to participate in age appropriate family, cultural and religious practices
  • address after school support if required, and
  • support inclusion in local sports and interest groups

Strategies to enhance autonomy and decision making

  • Spend time with peers without adult moderator
  • Support to make choices
  • Support to take action to bring choice to fruition
  • Support to understand consequences of actions

Strategies to promote challenge and contribution

  • High expectations at school and in all activities
  • Expect child to help others
  • Expect services/ activities to require child to do tasks appropriate to skill level

Appendix A6: Reasonable and Necessary support for children 6 to 15 and their families

Appendix A6: Reasonable and Necessary support for children 6 to 15 and their families

Issue

Goals

Outcomes

Supports

System

Reasonable and necessary for children 6-15

To gain functional developmental and coping skills
To participate in some activities without parents
To be increasingly involved in decision making that affects them

Children grow in independence

Therapeutic intervention
Thoughtful planning to enable increases in independence, capacity to ask for assistance, increased resilience
Support to make decisions

Tier 3

Increased participation with peers and in community

LAC, community

To be included in your local school

Children are welcomed and educated in their local school

Learning support

Education

Personal care and disability related support

To have friends to spend time with
To belong to groups based on interest
To be loved

Children form friendships with peers and have positive relationships with their family

Skilled facilitation to enable membership
Strengthen social and relationship skills

Tier 3
LAC

Capacity building for parents

Tier 2 (ILC)

To participate in before and after school and vacation programs (as required)
To participate in groups in the community based on interests

Children participate in local social and recreational activities

Inclusion support in community activities
Inclusion support in out of school hours care

LAC
state & federally funded out-of- school hours care

Vulnerabilities

To build congruence in everyday family life between needs of the child with disability and needs of other family members
To strengthen integration of child with disability into their everyday family life and the community more generally
To minimise concern about the effect of the child with disability on siblings both now and in the future

Well supported family that can care for all their children
Avoidance of out-of-home placement and/or family breakdown

’Whatever it takes’ supports to facilitate a healthy well-functioning family
Behaviour support for child
Encourage and assist to establish use of informal care of grandparents, friends, babysitters

Tier 3

Reasonable and necessary support for families

To support the development of peer relationships

Families support their child to develop and strengthen peer relationships

Capacity building
Skill building to enhance social and relationship skills of children
Skill building to facilitate connections

Tier 2 (ILC)

To understand their child’s development and how child is progressing
To have positive views of their child’s developmental progress and future
To include their child in age appropriate traditions of the culture

Families understand their children’s strengths, abilities and special needs.
Families include child in extended family, culture and community

Information
Support to build a positive vision and pathway
Parent advocacy understandings and skills
Contact with families with children with similar needs

Tier 2 (ILC)

To advocate for services and supports for their child
To identify their needs and how to access available services and supports to meet their needs
To understand their rights and the rights of their child with disability

Families know their rights and advocate effectively for their children.

Information

Tier 1

Vision building
Family advocacy training and support
Connection to empowering disability networks

Tier 2 (ILC)

To make informed decisions about their child
To feel confident in their parenting

Families help their children develop and learn.

Information
Capacity building

Tier 2 (ILC)

To have people to call upon for practical support
To have people to call upon for emotional support
To have people to call upon to look after their child

Families feel supported.

Support use of informal care of grandparents, friends, babysitters
“Whatever it takes’ supports to facilitate a healthy well functioning family
Support to maintain life roles other than carer
Support to maintain relationships and belonging

Tier 3

To feel confident to access services and community activities
To see themselves in partnership with professionals and services
To feel themselves in control in selecting services and supports that meet the needs of their child and family
To view themselves as equal and integral members of the team

Families are able to gain access to desired services, programs and activities in their community

Planning process

Tier 3

Support to negotiate with service providers and support workers

Tier 3

Capacity building

Tier 2 (ILC)

Professionals and services that assume capacity and work in person centred ways

Tier 2 (ILC) capacity building for services

Systemic approaches

Out of school hours services are inclusive

Support to develop and use informal care

Tier 3/LAC

Communities are welcoming

LAC Local Govt

Flexible work environments are responsive to the needs of parents of children with disability

Employment & Workplace Relations

Health and education professionals have high expectations and support inclusive paths for all children

Health
Education Tertiary training

Appendix A7 Key features young adults 16-25

Appendix A7 Key features young adults 16-25
Issue Adolescents and young adults 16-25

Key features of life stage

Growing independence, choice, voice and control:

  • develop own identity, develop and pursue interests
  • self sufficient, and
  • adapting to physical and emotional changes during puberty

Changed relationships:

  • peer pressure
  • form new attachments i.e. dating
  • become sexually active, and
  • changed relationship with family

Thinking about the future:

  • gain employment, and
  • moving out of home

What are adolescents and young adults 16 to 25 without disability doing?

  • Attend and complete secondary school
  • Attend post-secondary education and training
  • Have friends
  • Have intimate and sexual relationships
  • Develop sexual and gender identity
  • Play sport
  • Get together with peers on the weekend and holidays
  • Experiment – test boundaries
  • Distance themselves from family

What are people with disability aged 16 to 25 doing?

Living a controlled and confined life built on low expectations:

  • Independence, choice and control:
    • reduced control over major decisions in life
    • low self esteem, and
    • lack of support to develop capacity in decision making
  • activities of daily living:
    • little control of daily routines of personal care, shopping paying bills, meals etc.
  • Relationships and belonging:
    • isolated, few friends, spend time with older people
    • not supported to develop intimate relationships, and
    • need for sexual expression often ignored
  • Home:
    • most live with family
  • Health:
    • psychological challenges emerge for some
    • key health decisions made by others, and
    • lack education and support to build capacity to make decisions related to health
  • Education/training:
    • struggling to complete secondary school, and
    • struggling to enter and complete post-secondary education and training
  • Work:
    • less likely to have meaningful work experience
    • less likely to be in inclusive environments - in sheltered employment and day program, and
    • struggling to secure work
  • Social participation:
    • less likely to be volunteering, and
    • less likely to be with peers

Gap

  • Increased stress
  • At danger of lives becoming very different from peers
  • Increased vulnerability to exploitation including sexual abuse
  • Less connected to neighbourhood, peers and community
  • Poor social skills
  • Need for information, vision and pathway

Expectation of specialist supports

  • To be goal oriented and responsive: directed to the needs and goals of individual as they change
  • To be responsive and tailored to the needs of the individual
  • To guide development by supporting new learning to be incorporated into everyday tasks, routines and activities providing real life learning experiences
  • To support mainstream services so that learning is reinforced across all environments

Strategies to promote relationships and belonging

  • Identify strengths and interests as basis for relationships
  • Broaden networks and develop social and relationship skills
  • Relationships and sexuality education to build capacity to make decisions and reduce vulnerability to exploitation
  • Supported opportunities in ordinary environments - education, training, work, clubs
  • Support valued roles that promote connection

Strategies to enhance autonomy

  • Assist person and family to develop positive vision and pathway for a life comparable to peers without disability
  • Opportunities to pursue choice and control in all domains of life
  • Assist to make choices and take action to implement choice
  • Assist individual to plan for a home of their own

Strategies to promote decision making

  • Strengthen supported decision making
  • Specific focus on capacity to make decisions that reduce vulnerability to exploitation

Strategies to promote social, economic and cultural participation

  • Plan for and develop valued work roles and volunteering
  • Develop internships, mentoring and strategies to build relationships with potential employers
  • Support to take active roles in community

Strategies to promote challenge

  • High expectations
  • Work
  • Education
  • Volunteer roles that enhance sense of competence and contribution

Appendix A8: Reasonable and Necessary support for young people 16 to 25 and their families

Appendix A8: Reasonable and Necessary support for young people 16 to 25 and the families with whom they live
Issue Goals Outcomes Supports System

Reasonable & Necessary support for a good life for people 16 to 25

To become more independent seen in:

  • access to relevant information
  • making choices and having control over major decisions in life
  • feeling like a capable contributing adult
  • opportunities to grow skills and decision making
  • being supported to be yourself, and
  • capacity to direct one’s own support
  • to plan for the future
  • Individual has access to relevant information
  • Individual has enhanced functional and coping skills
  • Individual makes decisions or is supported to make decisions
  • Ideas for an adult life explored and implemented within the appropriate cultural context
  • Individual feels valued
  • Individual directs support
  • Individual is satisfied with his/her say in the development of the NDIS plan
  • Individual is satisfied with his/her say in the implementation of the NDIS plan

Key focus on increased independence

Tier 3 – planning
Tier 2 (ILC)

Support with transitions – value of multi-agency planning

NDIS, education + others

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)I
Tier 3

Infrastructure to underpin life building support

Tier 3

Supported decision making in place in all areas of life

Tier 2 (ILC) and 3

All supports assume potential, are person centred and support risk through safeguards

Tier 3

  • To maximise independence in tasks of daily living
  • Supports for daily living enable the achievement of goals
  • Individual achieves maximum possible independence in activities of daily living
  • Assistance in activities of daily living overcomes difficulty

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC) capacity building
Tier 3

Support in areas of domestic assistance, personal care, travel, communication and finance minimise difficulty

Tier 3

Skill building

Tier 3

  • All supports assume potential, are person centred and support risk through safeguards.
  • Support to plan and implement personal safeguards

Tier 3

  • To develop new relationships
  • To strengthen relationships with peers
  • To develop more adult relationship with family
  • To experience a sense of belonging in friendship circles, family and community
  • To have people to call upon for practical and emotional support
  • Individual has friends
  • Individual sees friends without adults present
  • Individual feels like he/she belongs
  • Individual gets out to socialise as much as he/she wants
  • Individual has people to call upon for practical and emotional support
  • Individual is supported to have safe intimate and sexual relationships if over 18 and desired

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC) capacity building
Tier 3

  • Infrastructure to underpin life building support
  • Skilled facilitation to establish and support membership

Tier 3

Develop social and relationship skills

Tier 3

Support to build informal support

Tier 3

Provide sexuality education to build capacity to make decision to reduce vulnerability to exploitation

Tier 3

Skill building for families to assist their family member to develop friends

Tier 2 (ILC)

  • To plan and establish home in a culturally appropriate way
  • To actively choose model of housing and support, who you live with and where you live
  • Individual has an active plan to have own home
  • Individual has his/her own home
    Individual chooses who he/she lives with and where to live

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC) capacity building
Tier 3

Infrastructure to underpin life building support

Tier 3

Support to develop informal support

Tier 3

Support to develop a practical plan

Tier 3

Lifestyle support

Tier 3

Affordable housing

Cwlth Rent Assistance
Community housing/ private rental market

  • To be in good health
  • To have a healthy lifestyle
    To feel and be safe at home and in community
  • Developing to be able to maintain a healthy lifestyle and good health
  • Developing to be able to make choices that support good health
    Individual feels and is safe at home and in community

Support to build a vision, a plan, maximise potential and make decisions
Assistance to maintain a healthy lifestyle
Assistance to coordinate health care needs/appointments

Health system
Tier 3

  • To complete secondary education
  • To participate in post-secondary education and training
  • Individual is engaged in education/training that is relevant and challenging
  • Individual completes secondary and post-secondary education and training
  • Individual has skills for work/ volunteering

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Learning support

Education

Personal care and disability related support

Tier 3

To work in open employment

  • Individual gains part time work in school holidays and after school
  • Individual gain real work experience/internship/volunteering
  • Individual has a job designed to fit his/her strengths and interests
  • Individual is employed in satisfying work

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)
Tier 3

Infrastructure to underpin life building support

Tier 3

Thoughtful planning – planning valued social roles, understanding culture of workplace

Tier 3

Skilled facilitation

Tier 3

Inclusion support

Tier 3 and facilitation of informal support in workplace

Mentor, Internships

Tier 3/LAC and facilitation of informal support in workplace

Finding and supporting work

Job Services Australia or DES

To be engaged socially, culturally and in civil society

  • Individual is actively connected to peers without disability
  • Individual has active social life
  • Individual is engaged in leisure pursuits that are enjoyable and/or challenging
  • Individual volunteers
  • Individual votes (18+)
  • Individual is a member of mainstream organisations

Support to build a vision, a plan, maximise potential and make decisions

Tier 3
LAC

Infrastructure to underpin life building support

Tier 3

Support to explore and pursue interests in ordinary environments

Tier 3 or LAC

Support to build informal support

Tier 3

  • ‘Whatever it takes’ supports to facilitate a healthy well-functioning family
  • Behaviour support
  • Support for inclusion in local recreational activities
  • Support to strengthen extended family and friends in their capacity to engage

State family support
Tier 3
LAC

Vulnerabilities

To minimise likelihood of:

  • low expectations
  • onset of mental health concerns
  • will not be included
  • family unable to continue to care, and
  • lack of affordable housing
  • Individual achieves potential and a positive future
  • Individual moves out of home in a planned basis, preventing out of home care in response to crisis
  • Family has continued capacity to care

Infrastructure to underpin life building support

Tier 3

Behaviour support

Tier 3

Support for inclusion in all areas of life

LAC/local govt

Support to strengthen networks of extended family and friends

Supported decision making

Housing

Reasonable & Necessary support for family

To plan for adult life including post school education and training, work, valued roles, included in community

Families assist their family member to transition into adulthood

  • Information, capacity building
  • Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC), Tier 3

‘Whatever it takes’ supports to facilitate a healthy well-functioning family

Tier 3

Practical support

Tier 3

Support the use of informal care

Tier 3/ Tier 2 (ILC)/ LAC

Succession planning

Tier 3 /Tier 2 (ILC)

To support the development of peer relationships

Families support their child to develop and strengthen peer relationships

  • Capacity building
  • Skill building to enhance social and relationship
  • skills of children
    Skill building to facilitate connections

Tier 2 (ILC)

  • To advocate for services and supports for family member and family
  • To be able to identify their needs and know how to access available services and supports to meet their needs
  • To understand their rights and the rights of their family member with disability

Families know their rights and advocate effectively for their family member with disability

Information

ILC, Tiers 1 and 3

Parent advocacy training

Tier 2 (ILC)

Family advocacy support

Tier 2 (ILC)

Connection to empowering disability networks

Tier 2 (ILC)

  • To have people to call on for practical assistance
  • To have people to call on to care for their family member with disability
  • To have people to call on for emotional support

Families feel supported

  • Flexible individualised support for the person with disability in regular reliable ways and for emergencies
  • Practical assistance with caring roles
  • Practical assistance that makes a difference to the family
  • Support to maintain life roles other than as carer
  • Support to maintain relationships and belonging

Tier 3

  • To feel confident in their ability to access services and work with professional
  • To feel in control in selecting services and supports that meet the needs of their child and family
  • To work in partnership with service providers to meet the needs of their family member with disability

Families are able to gain access to desired services, programs and activities in their community

Planning process

Tier 3

Support to negotiate with service providers and support workers

Tier 3

Capacity building

Tier 2 (ILC)

Professionals and services that assume capacity and work in person centred ways

Tier 2 (ILC)

  • To feel confident for the future of their family member with disability with the NDIS
  • To be able to work as much as they want

Families enjoy health and wellbeing

‘Whatever it takes’ supports to facilitate a healthy well-functioning family

Tier 3

Information, support & vision building

Tier 2 (ILC)

Practical support

Tier 3

Support to develop and use informal care

Tier 3/LAC

Systemic approaches

Communities are welcoming

LAC
Local government
Community

Flexible work environments are responsive to the needs of parents of people with disability

Employment & workplace relations

Health and education professionals have high expectations and support inclusive paths for all

Health
Education
Tertiary training

Appendix A9 Key features of an ordinary life for adults 26-55

Appendix A9 Key features of an ordinary life for adults 26-55
Issue

Adults 26-55

Key features of life stage

  • Have choice and significant control over their lives
  • Have relationships including sexual partners, children, grandchildren and friends
  • Have their own home
  • Undertake post-secondary education and training
  • Work
  • Develop and pursue interests
  • Provide care to elderly parent

What are people with disability doing?

Living a controlled and confined life built on low expectations:

  • Choice voice and control:
    • reduced control over major decisions in life
    • low self esteem, and
    • lack capacity to grow skills in decision making
  • Daily living:
    • little control of daily routines of personal care, shopping paying bills, meals etc.
  • Relationships and belonging:
    • isolated, few friends, fewer proportion have partners
    • spend time with older people
    • not supported to develop intimate relationships, and
    • need for sexual expression often ignored
  • Home:
    • younger cohort live with family, and
    • older cohort live in group accommodation
  • Health:
    • poorer physical and emotional health than their peers
    • key health decisions made by others, and
    • lack education and support to build capacity to make decisions related to health
  • Lifelong learning:
    • younger cohort struggling to enter and complete post-secondary education and training, and
    • older group disengaged
  • Work:
    • less likely to be in inclusive environments - in sheltered employment and day program, and
    • struggling to secure and retain work
  • Social participation:
    • less likely to be volunteering, and
    • less likely to be with peers

More likely to participate in grouped leisure activities

Strategies to promote relationships and belonging

  • Broaden social networks and develop social and relationship skills
  • Relationships and sexuality education to build capacity to make decisions and reduce vulnerability to exploitation
  • Supported opportunities in ordinary environments - work, clubs
  • Support valued roles that promote connection
  • Support memberships of interest based groups

Strategies to enhance autonomy

  • Assist person and family to develop positive vision and pathway
  • Opportunities to strengthen choice and control in all domains of life
  • Assist person to plan for and achieve a home of their own
  • Develop valued work roles and volunteering

Strategies to promote decision making

  • Strengthen supported decision making in all domains
  • Specific focus on capacity to make decisions that reduce vulnerability to exploitation

Strategies to promote social, economic and cultural participation

  • Develop internships, mentoring and strategies to build relationships with potential employers
  • Foster real adult interests

Strategies to promote challenge

  • Work
  • Continuing education

Strategies to promote contribution

  • Expectations of contribution to others
  • Enhance competences of role as family member
  • Volunteering – take on roles that enhance sense of competence and contribution

Appendix A10 Reasonable and necessary support for adults 26 to 55 and the families with whom they live

Appendix A10 Reasonable and necessary support for adults 26 to 55 and the families with whom they live
Issue Goals Desired Outcome Supports System

Reasonable & Necessary support for an ordinary life for adults
26-55

To experience choice and control seen in

  • -access to relevant information
  • making choices and having control over major decisions in life
  • feeling like a capable contributing adult
  • opportunities to grow skills and decision making
  • being supported to be yourself, and
  • capacity to direct one’s own support

Individual has access to relevant information

Individual makes decisions or is supported to make decisions

Individual is satisfied with their say in the development of the plan

Individual is satisfied with their say in the implementation of the plan

Individual feels valued

Individual has increased capacity to direct their own supports

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Tier 3

Infrastructure to underpin life building support

Tier 3

Supported decision making in place in all areas of life

Tier 2 (ILC) and 3

All supports assume potential, are person centred and support risk through safeguards

Tier 3

Supports for daily living enable the achievement of goals

Assistance in activities of daily living overcomes difficulty

Individual achieves maximum independence in tasks of daily living

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC) capacity building

Tier 3

Support in areas of domestic assistance, personal care, travel, communication and finance minimise difficulty

Tier 3

Skill building

Tier 3

All supports assume potential, are person centred and support risk through safeguards.

Support to plan and implement personal safeguards

Tier 3

To develop new relationships

To feel like you belong with friends, family and the community

To have people to call upon for practical and emotional support

Individual is supported to maintain roles of partner, parent

Individual has friends

Individual has opportunity to make new friends

Individual spends time with friends without a mediating person present

Individual feels like he/she belongs

Individual gets out to socialise as much as he/she wants

Individual has people to call upon for practical and emotional support

Individual is supported to have safe sexual expression and intimate relationships

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Tier 3

Infrastructure to underpin life building support

Skilled facilitation to establish and support membership

Tier 3

Develop social and relationship skills

Tier 3

Support to build informal support

Tier 3

Provide sexuality education to build capacity to make decision to reduce vulnerability to exploitation

Tier 3

To establish a home that is culturally appropriate

To actively choose the model of housing and support, who you live with and where you live

Individual has a home that is culturally normative

Individual chooses who he/she lives with and where he/she lives

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Tier 3

Infrastructure to underpin life building support

Tier 3

Support to develop informal support

Tier 3

Support to develop a practical plan

Tier 3

Lifestyle support

Tier 3

Affordable housing

Cwlth Rent Assistance
Community housing/ private rental market

To be healthy

To lead a healthy lifestyle

To feel and be safe at home and in the community

Individual has an annual health check

Individual maintains a healthy lifestyle and good health

Individual is able to make choices that support good health

Individual feels and is safe at home and in community

Support to build a vision, a plan, maximise potential and make decisions

Assistance to maintain a healthy lifestyle

Assistance to coordinate health care needs/appointments

Health system

Tier 3

To have opportunities for lifelong learning

Individual feels they are learning new things

Individual is engaged in education / training that is relevant and challenging

Individual completes post-secondary education and training

Individual has skills for work/ volunteering

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Support to make choices in education

Tier 3

Learning support

Education

Personal care and disability related support

Tier 3

To work

Individual is employed in satisfying work

Support to build a vision, a plan, maximise potential and make decisions

Tier 2 (ILC)

Tier 3

Infrastructure to underpin life building support

Tier 3

Thoughtful planning – planning valued social roles, understanding culture of workplace

Tier 3

Skilled facilitation

Tier 3

Inclusion support

Tier 3 and facilitation of informal support in workplace

Mentor, Internships

Tier 3/LAC and facilitation of informal support in workplace

Finding and supporting work

Job Services Australia or DES

To be engaged socially, culturally and in civil society

Individual has volunteer roles

Individual is engaged in leisure pursuits that are enjoyable and/or challenging

Individual votes

Individual is a member of mainstream organisations

Support to build a vision, a plan, maximise potential and make decisions

Tier 3

LAC

Infrastructure to underpin life building support

Tier 3

Support to explore and pursue interests in ordinary environments

Tier 3 or LAC

Support to build informal support

Tier 3

Vulnerabilities

To minimise likelihood of:

  • low expectations
  • mental health concerns
  • not being included, and
  • family unable to continue to care

Significant others hold high expectations

Individual experiences emotional and psychological wellbeing

Individual experiences relationships and membership

Individual moves out of home in a planned basis, preventing out of home care in response to crisis

Infrastructure to underpin life building support

Tier 3

Behaviour support

Tier 3

Support for inclusion in all areas of life

LAC/local govt

Support to strengthen networks of extended family and friends

Tier 3

Supported decision making

Tier 3

Lack of affordable housing

Individual lives in affordable housing

Housing

Reasonable & Necessary support for family where participant lives with family

To have people to call on for practical assistance

To have people to call on to care for their family member with disability

To have people to call on for emotional support

Families have the support they need to care

Families feel supported

Flexible individualised support for the person with disability in regular reliable ways and for emergencies

Practical assistance with caring roles

Practical assistance that makes a difference to the family

Support to maintain life roles other than as carer

Support to maintain relationships and belonging

Tier 3

To be able to advocate for services and supports for their family member and their family

To be able to identify their needs and know how to access available services and supports to meet their need

To understand their rights and the rights of their family member with disability

Families know their rights and advocate effectively for their family member with disability.

Information

ILC, Tiers 1 and 3

Parent advocacy training

Tier 2 (ILC)

Family advocacy support

Tier 2 (ILC)

Connection to empowering disability networks

Tier 2 (ILC)

To feel confident in their ability to access services and work with professionals

To feel themselves in control in selecting services and supports that meet the needs of their child and family

To view themselves as equal and integral members of the team

To work in partnership with service providers to meet the needs of their family member with disability

Families are able to gain access to desired services, programs, and activities in their community.

Planning process

Support to negotiate with service providers and support workers

Tier 3

Support to negotiate with service providers and support workers

Tier 3

Capacity building

Tier 2 (ILC)

Professionals and services that assume capacity and work in person centred ways

Tier 2 (ILC)

To plan with family and friends about the future for their family member with disability when they are no longer the primary care givers

To support their family member with disability to spend days and nights away from the immediate family

Families have succession plans

Succession planning seminars

Tier 3

Support to strengthen informal support

Tier 2 (ILC)

Positive opportunities for people with disability away from family including overnight

Tier 3

To feel more confident for the future of their family member with disability

To be able to work as much as they want

Families experience health and wellbeing

‘Whatever it takes’ supports to facilitate a healthy well-functioning family

Tier 3

Information, support & vision building

Tier 2 (ILC)

Practical support

Tier 3

Systemic approaches

Communities are welcoming

LAC/local government
Community

Flexible work environments are responsive to the needs of families of people with disability

Employment & workplace relations

Health and education professionals have high expectations and support inclusive paths for all people

Health
Education Tertiary training

Appendix A11 Key features adults 55+

Table 1: Thinking about an ordinary life

Appendix A11 Key features adults 55+ Table 1: Thinking about an ordinary life

Issue

Adults 55+

Key features of life stage

  • Have choice and significant control over their lives
  • Have a partners, children, grandchildren and friends
  • Have their own home
  • Undertake courses of interest
  • Work
  • Plan for retirement and retire
  • Develop and pursue interests
  • Travel
  • Experience illness or disability
  • Provide care and support to partner with illness or disability
  • Cope with death of spouse and peers

What are people with disability doing?

Living a controlled and confined life built on low expectations:

  • Choice, voice and control:
    • reduced control over major decisions in life, and
    • low self esteem
  • Daily living:
    • little control of daily routines of personal care, shopping paying bills, meals etc.
  • Relationships and belonging:
    • isolated, few friends, fewer proportion are partnered
    • not supported to have intimate relationships, and
    • need for sexual expression often ignored
  • Home:
    • most live in group accommodation
  • Health:
    • deteriorating health
    • key health decisions made by others
  • Lifelong education:
    • unlikely to participate
  • Work :
    • less likely to be in inclusive environments - in sheltered employment and day program, and
    • preparing to retire
  • Social participation
    • less likely to be volunteering
    • less likely to be with peers, and
    • more likely to participate in grouped leisure activities

Strategies to promote relationships and belonging

  • Strengthen and maintain social networks and enhance social and relationship skills
  • Maintain intimate relationships.
  • Maintain capacity to make decisions that reduce vulnerability to exploitation
  • Supported opportunities in ordinary environments - work, clubs
  • Support valued roles that promote connection
  • Support memberships of interest based groups

Strategies to enhance autonomy

  • Assist person and family to develop positive vision and pathway
  • Opportunities to strengthen choice and control in all domains of life
  • Assist person to maintain their own home
  • Develop valued volunteer roles

Strategies to promote decision making

  • Maintain supported decision making in all domains
  • Focus of decision making in planning for retirement

Social, economic and cultural participation

  • Foster real adult interests
  • Develop/strengthen participation in clubs and community organisations

Strategies to promote challenge

Continuing education/extending skills in areas of interest

Working toward contribution

  • Expectations of contribution to others
  • Enhance competences of role as family member
  • Volunteering – take on roles that enhance sense of competence and contribution

Appendix A12 Goals and outcomes for reasonable and necessary support for people with disability 55+

The supports outlined for people 25-55 are the same as for people 55+. The difference is that the goals and outcomes have progressed.

Appendix A12 Goals and outcomes for reasonable and necessary support for people with disability 55+ The supports outlined for people 25-55 are the same as for people 55+. The difference is that the goals and outcomes have progressed.
Issue Goals Outcomes

Reasonable and necessary support for an ordinary life for adults 55+

To experience choice and control seen in

  • access to relevant information
  • making choices and having control over major decisions in life
  • feeling like a capable contributing adult
  • opportunities to grow skills and decision making
  • being supported to be yourself, and
  • capacity to direct one’s own support

Individual has access to relevant information

Individual makes decisions or is supported to make decisions

Individual is satisfied with their say in the development of the plan

Individual is satisfied with their say in the implementation of the plan

Individual feels valued

Individual has increased capacity to direct their own supports

Supports for daily living enable the achievement of goals

Assistance in activities of daily living overcomes difficulty

To strengthen and maintain relationships

To feel like you belong with friends, family and in community

To have people to call on for practical and emotional support

Individual is supported to maintain roles of partner and parent

Individual has friends

Individual has opportunity to make new friends

Individual feels like he/she belongs

Individual gets out to socialise as much as he/she wants

Individual has people to call upon for practical and emotional support

Individual is supported to have safe sexual expression and intimate relationships

To maintain a home that is culturally appropriate

Individual has a home that is culturally normative

Individual chooses who he/she lives with and where he/she lives

To be healthy

To lead a healthy lifestyle

To feel and be safe in one’s home and community

Individual maintains a healthy lifestyle and good health

Individual has regular reviews of health

Individual is able to make choices that support good health

Individual is safe in his/her home and community

To engage in lifelong learning

Individual engages in learning in areas of interest

Individual maintains skills

Individual has skills for volunteering

To work

Individual is employed in satisfying work

Individual plans for retirement

To be engaged socially, culturally and in civil society

Individual has volunteer roles

Individual is engaged in leisure pursuits that are enjoyable and/or challenging

Individual votes

Individual is a member of mainstream organisations

Vulnerabilities

Deteriorating health and skills

Isolation

Mental health concerns

Individual has regular health checks

Individual experiences emotional and psychological wellbeing

Individual has relationships and membership

Lack of affordable housing

Individual lives in affordable housing

Reasonable and necessary support for families with whom person with disability 55+ lives

To have people to call on for practical assistance

To have people to call on to support their family member with disability

To have people to call on for emotional support

Families have the support they need to care

Families fee supported

Where caring role is held by parents:

To implement succession plans

To support individual with disability to establish a sustainable home

People with disability are assisted to transition into their own home

Where family is NOT parents:

To plan with family and friends about the future for their family member with disability when they are no longer the primary care givers

Families have succession plans

To advocate for services and supports for their family member and their family

To be able to identify their needs and know how to access available services and supports to meet their needs

To understand their rights and the rights of their family member with disability

Families know their rights and advocate effectively for their family member with disability.

To feel confident in their ability to access services and work with professionals

To feel themselves in control in selecting services and supports that meet the needs of their child and family

To view themselves as equal and integral members of the team

To work in partnership with service providers to meet the needs of their family member with disability

Families are able to gain access to desired services, programs, and activities in their community.

To feel confident for the future of their family member with disability

To be able to work as much as they want

Families experience health and wellbeing

Appendix B Analysis of support clusters in relation to enablers of an ordinary life

It is critical to acknowledge that, consistent with the Australian Government commitment to the UNCRPD, the Commonwealth Government and the Governments of states and territories have the responsibility to remove barriers that prevent people with disability from exercising their rights as equal and valued members of the community. The NDIS and the supports identified below are just one small part of enabling an ordinary life for people with disability. The purpose of this table however is to examine the extent to which support clusters, as currently framed, facilitate enablers or an ordinary life.

Appendix B Analysis of support clusters in relation to enablers of an ordinary life
What What is required Cluster Positive Challenge

Life planning

Thoughtful understanding of values and beliefs that underpin inclusion

Opportunity for iterative process over time including inclusion of people who know and care about the person

Investment in people and families

Shift of authority to people and families

Partnerships

Person centred support

Strategies to overcome barriers

NDIS Planning conversation

NDIS preplanning work books and information sessions

Specialisation of planners will strengthen effectiveness

Depth and time frames required for life planning must compete with tight time frames required to transition participants into the NDIS

NDIS planning conversation can only deal with one aspect of life planning, namely ‘tailoring support to the individual’

Anecdotal observations of variability in quality of planner

08 004

Life/Transition Planning

An important enabler of a good life. Elements of a plan can be ‘chunked’ for work to be authorized in a goal focused way.

Acknowledged need for framework for holding service providers to account for movement toward outcomes

Descriptors do not reflect the breadth of what this item covers

Needs to be more clearly spelt out in the cluster description

Building a vision

Broaden views of what is possible

Evidence about what leads to good outcomes

Connect people to stories of ‘ordinary lives’

Mentored by simlilar people

Tier 2 (ILC)

Disability Support Organisations (DSOs)

08 004
Life/Transition Planning

NDIS information and pre-panning sessions provide a start.

Opportunity for individualized vision building helpful

Tier 2 (ILC) and DSOs do not yet exist.

There are small non-recurrent initiatives funded by state and territory governments.

Building informal support of family, friends and community

Understanding of valued social roles to promote relationships that are built on interests and citizenship rather than pity.

Skilled facilitation to find opportunities and guide support workers to facilitate relationships rather than provide paid friendship.

08 004
Life/Transition Planning

15 005
Individual social skills development OR

23 022
development of skills for community, social and recreational participation

LAC where emphasis is on community and belonging

An important enabler of a good life. Elements of a plan can be ‘chunked’ for work to be authorized in a goal focused way. Is used to support time-limited transitions.

Acknowledged need for framework for holding service providers to account for movement on outcomes

Descriptor does not reflect the breadth that this item covers. Specifically, ‘building informal support’ does not seem a ‘time limited support to assist the participant, their family and carers to develop a vision for a meaningful life and plan for their changing needs and circumstances’.

Greater specificity would promote the positive supports enabled by this item.

Development and supervision of support workers to take on roles appropriate to building informal support. Development may come through attending workshops e.g. on Active Support, SRV (Social Role Valorisation)

Not available

There is no avenue to fund the development of staff. Knowledge and skills in assisting a participant to develop relationships is not a core skill of support workers.

Building skills of participant

Skill analysis including breaking a skill into its component parts, identifying opportunities to practice and rewards

15 004
Individual life and personal skills development

Can be used to fund high intensity up front training with active monitoring to scale back over time and reconfigure to facilitate continued development of skills.

Skill building may require higher order analysis by skilled practitioner to ensure evidence-based skill building approach tailored to participant.

This item enables longer-term support than would usually be anticipated by a ‘training’ descriptor.

Skill building support around budgeting comes from cluster 08 001 - it is inconsistent that this is not included with other skill building items.

None of these items allow the payment of training fees for a participant to attend a course that teaches the skill.

Overcoming barriers

Systematic analysis of barrier at the individual, family, service and societal level and development of strategies to overcome barriers in ways that facilitate citizenship

08 002
Coordination of supports

LAC where barrier relates to mainstream inclusion and effort not intensive

Very important support item that provides significant infrastructure to facilitate ‘ordinary lives’

Provides the source of funding for facilitation, monitoring the implementation of a plan or support item against goals

Assists a person to access services related to behaviours of risk e.g. drug and alcohol

This item enables greater depth of analysis, skill and planning than implied in the descriptor ‘coordination of supports’

Descriptor does not reflect the depth of analysis, skill and planning enabled by this line item. In everyday usage in human services, the term ‘coordination’ implies a more superficial linking than has been built into this item

Supported decision making (SDM)

Resource and training material targeted at people with disability families and service providers

Pilot in NSW found that SDM:

  • Can be time intensive.
  • Can require intensive work to build the capacity of decision makers and supporters to be ‘decision ready’.
  • Requires flexible arrangements for supporters as ‘natural’ supporters may not be available or willing to take part.
  • Requires filters for conflicts of interest where supporters have a vested interest in the decisions being made.
  • Sometimes requires cultural shifts to be sustainable

Should be resources in Tier 2 (ILC)

15 009
Training in planning and plan management

Excellent resource material was developed through the Practical Design Fund.

The NDIS pre-planning sessions and the planning conversation provide a unique opportunity to raise awareness and assist people to seek increased choice and control through supported decision making

Supported decision making is very new. More prominence needs to be given to it because by its very nature it requires families and services to implement it.

Will require significant skill enhancement and ongoing support for changed practice for support workers and service coordinators but source of funding for this is unclear (refer skilled workforce).

Health and wellbeing

Services and supports that focus on the enablers of a good life

25 000s Physical wellbeing

2700s Therapeutic supports

08 002 & 08 003 for people who are more vulnerable

08 002 & 08 003 supports health and wellbeing for people who are more vulnerable and need assistance to link and maintain service from mainstream agencies

Lack of clarity as to the basis of differentiation between disability related needs and other needs, especially or example in relation to access to Personal trainer (25 008) and training at the gym

Community inclusion

Planning

Identification of interests and possible role

Strategies to reduce barriers and enhance relationships

Support to facilitate relationships

LAC

15 005
Individual social skills development

Or 23 022development of skills for community, social and recreational participation

LAC is useful but often not sufficient

Responding to at risk behaviour

Analysis of behaviour, a plan and training for carers and others

11001
Behaviour support management plan

11004
Intensive behaviour intervention support

11006
Training for carers and others in behaviour management strategies

08002
Co-ordination of supports

This cluster can be used to respond to number of at risk factors simultaneously e.g. in relation to at risk sexual practices, drug and alcohol

Co-ordination of supports can be used to facilitate access to treatments in mainstream services

Responding to unplanned events e.g. child protection/ individual protection

Sole carer in hospitalMedical emergency

Abandonment

Psychological deterioration

  • A community barrier
  • Loss of housing

Skilled professional to analyse situation and put in place plan and strategies to meet immediate and ongoing need.

Response to specific crisis will be covered by a range of clusters as well as mainstream services

08 002
Co-ordination of supports

08 003
Co-ordination of supports – higher intensity

Co-ordination of supports is always in the plan where person is vulnerable and needs infrastructure to make things happen.

Higher intensity used where person is ‘not settled’.

People vulnerable to crises are funded for more hours on a weekly basis so that there is money available for a crisis. If insufficient, person can come back for review. Planner would touch base with the service provider on a regular basis to amend plan as required

Would be value in more detailed descriptors

Anecdotal observations in the Hunter suggest variable use of Co-ordination of supports.

Becoming a volunteer

Trusted person assists the individual to explore their interests and seek membership of a group on the basis of shared interests.

Recruit and provide training and support to a member of the group to act as a mentor and soft advocate to guide success.[22]

08 002
Co-ordination of supports (developing capacity and resilience in a participant’s network) OR

15 005
social skills development

08 005
Mentoring and peer support

Recognition that the process has to go at the pace of the individual and the group and this may be slow. Support to mentor in the group may be ongoing at a low level.

Wording of 08 005 is of a very practical nature e.g. making appointments and could be better worded to describe its possibilities

Skilled workforce

Capacity to provide specific training to staff required to assist an individual

Not covered

Cannot make assumption that staff have all the knowledge and skills required.

Shared management: Supporting participant to take on responsibility for aspects of service provision e.g. for staffing

Capacity building

Shared responsibility for function with planned, phased out assistance by service provider

15 009
Training in planning and plan management

26 000
Management of funding for supports

Very positive to see clear identification of training for this function

Does not provide the opportunity for shared management many participants seeking

Negative message in 26 000 with ‘unable to do so independently’Replace with ‘who want assistance to take responsibility for’

The skill building toward self-management is separated from plan management.

Planner described the service intermediary role as independent of financial intermediary and as transactional rather than developmental. Information for participants indicates that the service intermediary role cannot be separated from the financial intermediary role.

Footnotes

[1] Maslow, A, http://www.learning-theories.com/maslows-hierarchy-of-needs.html.

[2] Seligman, M., Authentic Happiness: Using Positive Psychology to realise your potential for lasting fulfilment, NY Free Press, 2002.

[3] National Association for Self Esteem http://www.self-esteem-nase.org/research.php.

[4] Australian Government, Department of Health and Ageing, 2013, Staying Connected.

[5] Stokes, H, Imagining Futures: Identity narratives and the role of work, education, community and family, Melbourne University Press, Melbourne, 2012.

[6] Stokes, H, Turnball, M & Wyn, J, Young people with a disability: independence and opportunity: a literature review at http://web.education.unimelb.edu.au/yrc/linked_documents/research_report39.pdf.

[7] Dept. of Education and Children’s Services, South Australia South Australian Learner Wellbeing Framework, 2007.

[8] Graetz, B, Health consequences of employment and unemployment: Longitudinal evidence for young men and women, Social Science & Medicine V36, N6, 1994, p. 715–724.

[9] Wilkinson, R, & Marmot, M, Social determinants of health: the solid facts, World Health Organisation at http://books.google.com.au/books?hl=en&lr=&id=QDFzqNZZHLMC&oi=fnd&pg=PA5&dq=impact+of+social+and+economic+participation+on+health+and+wellbeing&ots=xUoJeESKlp&sig=n7I97INA-6rzO8pMLFU89L3Yi8g#v=onepage&q&f=true

[10] Butterworth, P, Leach, LS,Olesen, S, Rodgers, B, Broom, D, The psychosocial quality of work determines whether employment has benefits for mental health: results from a longitudinal national household panel survey, 2011 at http://oem.bmj.com/content/early/2011/02/26/oem.2010.059030.abstract

[11] Koen S & initial Duigan Forging Brighter Futures, paper presented a History and Future of Social Innovation Conference, Adelaide, 19-21 June, 2008.

[12] Stokes, H, Turnball, M & Wyn, J op. cit.

[13] Rock, P (,Independence: What it means to six disabled people living in the community. Disability and Society 3(1), 1988, pp. 27-35.

[14] Stokes, H, Turnball, M & Wyn, J op. cit.

[15] National People with Disabilities and Carer Council,Shut Out, 2009, p. ?.

[16] National People with Disabilities and Carer Council, Op cit. p. 3.

[17] Ibid., p. 4.

[18] Self-managed Community Participation is a NSW program for school leavers that uses a shared management approach, giving complete control over factors of support to people with disability and families. Many participants take responsibility for functions such as staffing and support coordination. Others value the control self-managed Community Participation gives them over lifestyle decisions but retain the value added Infrastructure that underpins life-building support from the service.

[19] Service providers argue that unit costs under the NDIS prevent participants from advertising for their own staff.

[20] KPMG, Interim Report: Review of the Optimal Approach to transition to the full NDIS, 2014, Parliamentary Joint Standing Committee on the National Disability Insurance Scheme, Progress Report on the implementation and administration of the NDIS, July 2014.

[21] Baltes, 2003 at https://www.inkling.com/read/human-development-diane-papalia-ruth-feldman-12th/chapter-1/paul-b--baltess-life-span

[22] See http://www.afford.com.au/employment/transition-to-retirement-sp-829?videoid=nQTfe-qVpFg