Some people with an intellectual disability could easily be overlooked under the NDIS, an advocacy agency warns.

National Disability Insurance Scheme must cover all

Some people with an intellectual disability could easily be overlooked under the new National Disability Insurance Scheme (NDIS), an advocacy agency warns.

The NSW Council for Intellectual Disability (NSW CID) has urged stakeholders, including working carers, to keep the interests of these people uppermost in their vision as the NDIS gets formulated.

The special categories of people with an intellectual disability are those who have:

• come into contact with the criminal justice system and/or
• lead superficially independent but ‘at risk’ lifestyles and/or
• have a history of abuse or neglect and/or
• have a dual diagnosis with a mental disorder

The needs of these groups are often very different from those of other people with disability, a NSW CID spokesperson said.

NSW CID has considerable experience with these groups and has produced a fact sheet to highlight some critical issues.

Below is a summary from that fact sheet which may be of interest to working carers.

The design of the NDIS needs to carefully consider the needs of ALL people with disability. It would be easy to overlook people who lack self-advocacy skills, family advocates and those with no existing links with the disability service system – as is typical in people who fit the above-listed categories.

Many people fall into these groups. NSW Government studies show that up to 14 per cent of young people in juvenile detention have a mild or more significant intellectual disability.

Research also shows that people with intellectual disability have much higher rates of mental illness than the general population.

There is great cost in not squarely meeting the needs of these groups. Firstly, there is the human cost to the individual. Secondly, there is the financial cost to health, criminal justice and disability services.

Workforce issues:

NSW CID is very sceptical about whether the market will lead to the adequate training and supply of staff to work with people who have challenging needs, in particular the groups covered by this fact sheet. The NDIS needs to include a robust workforce development strategy.

Eligibility:

NSW CID assumes that all people with mild intellectual disability will be fully covered by the NDIS. Tier 3 of the NDIS also needs to fully cover people with IQ scores in the borderline range of intellectual disability but who have higher support needs flowing from their intellectual disability and factors such as those outlined in the above dot points. For example, the NDIS needs to cover people who have borderline intellectual disability, mental disorders such as a personality disorder and problems with alcohol and other drugs.

Engagement:

There are many people on society’s fringe who will not initially see the benefit of support services. The NDIS should recognise the need for a skilled worker to proactively spend a lot of time engaging with such people and help them develop their understanding of their needs and willingness to accept help. Sometimes, if voluntary engagement cannot be achieved, guardianship might be needed, with the guardian then to pursue services on behalf of the person; however, this should be the exception rather than the norm.

Will individual needs be covered?

Many people have complex support needs that are very different to what disability services are used to. Care is needed to ensure that these support needs will be covered by both needs assessment tools and the range of supports to be funded.

Common assessment tools are poorly equipped to identify the needs of the people covered by the fact sheet. An adequate assessment may require a combination of tools or the "least inappropriate" tool to be complemented by input from the person and their family/advocate and professional judgement by the assessor.

Practical examples of supports that people may need include:

• Dealing with day-to-day crises and challenges, for example, in managing relationships with friends and neighbours.
• Accessing health services, for example mental health, drug and alcohol.
• Moving towards a healthy lifestyle.
• Dealing with the public housing system.
• Support to move from a homeless or itinerant lifestyle or from inadequate accommodation in a boarding or rooming house.
• Coordination of disability support with mainstream youth and welfare services.
• Mentoring services.
• Re-establishing and maintaining fractured relationships with family.
• Dealing with the criminal justice system.

Some people’s needs fluctuate greatly and unpredictably depending on their mental state and personal crises. Supports need to quickly adapt to these fluctuations.

Needs and how to address them are also affected by racial and cultural backgrounds.

Demarcation with mental health services

The needs of people with intellectual disability will often be increased due to a co-existing mental disorder.

There are major impediments to people with intellectual disability accessing appropriate mental health services. Some needs can be identified as clearly health needs, for example access to assessment and treatment by a psychiatrist.

Many other needs of people with a dual diagnosis cannot neatly be defined as mental health needs as opposed to intellectual disability needs. Many needs arise from the interplay of the intellectual disability and the mental disorder.

The NDIS should cover all of the needs of a person with intellectual disability except for those which are clearly needs for clinical health services.

How NSW CID can assist:

Input to the design of the NDIS to respond effectively to the needs of the groups covered by this fact sheet.

Provide more information on the points we have raised, advice on system design and links to relevant literature, research and best practice examples.

Facilitate access to other experts in this area.

For more information contact:

Jim Simpson, Senior Advocate, T: 02 9345 5504; E: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Aine Healy, Executive Director, T: 02 9211 1611; E: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

W: www.nswcid.org.au