Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Friday, 25 January 2013 4:53:04 PM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

The disability system does help our family in some respects. However, it is mainly our intellectually disabled child who receives help. My wife - his mother - is disabled by a combination of visual impariment (legal blindness, endocryne sicknesses and chronic fatigue syndrome), but it is very difficult for her to receive the kinds of support that she seeks, because she can still move her arms and legs and perform personal hygiene, so for instance, I am not able to get a carer’s payment to care for her; and it has proved very difficult to get transport assistance for her. It has taken five years for ADHC to come to the realisation that she needs support as much as her child, and to provide a case worker to work out what supports can be provided. The case manager was very good, but was only on the project for a limited period; we could do with on-going case management. One major problem is that a visually impaired or legally blind person with co- morbidities will not gain work in normal organisations - such as the large systems engineering comapny for which I worked recently. There is no policy to employ people like . Comapnies appear to be oblivious to the services offered by advocates such as Vision Australia, or unwilling to take the risk of employing complex disabilities. If there were a system to help partially-sighted (print- handicapped) people to study and work in the professions that they wish, it would help.

The main features of the NDIS that will make a difference to the community are:

• Ensure support and equipment is available when needed,
• Better access to mainstream support and services,
• Better access to education and work opportunities,
• More opportunities to participate in the community,
• Increased ability to coordinate services to suit the “whole” person/family,
• Older parents and families will not worry what happens when they can no longer provide support

The most important services for the NDIS to provide are:

• Therapy and allied health services,
• Equipment and home/vehicle modifications,
• Education support (technology/services/equipment),
• Life-skills,
• Support for families and carers,
• Accommodation options,
• In-home care and domestic assistance,
• Flexible in-home/outside home respite,
• Case management, planning and coordination,
• Crisis and emergency support

I support the introduction of the NDIS.

Life for a disabled person is frustrating. A lot of support is needed, and either one waits a very long time for it, or it is hard to get (or even not available). When available, all supports are extremely valuable. It seems that the NDIS is set up (1) to help people who ‘fall through the cracks’ - they are disabled but for whom the existing services do not cater, as in the case of a visually-impaired person who needs all the help that she can get, but is barred by the measures used to evaluate her level of disability;

(2) to provide services that are geared to the specific needs of each individual.

ADHD does attempt to do (2) above, as in the case management provided. Hopefully, NDIS will provide more case management, not less.

However, if the parents of the disabled child have to become his case manager and administrator (without paying her for it), which is an excessive load on the parents and will make it very difficult to continue working normally.

I agree for my submission to be made public

Regards,

Ir. John Holden