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: Sunday, 20 January 2013 9:02:39 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 system is not flexible enough and does not adequately meet the needs of my adult son who is blind, with ABI and complex medical problems resulting from a brain tumour and subsequent surgery in 1998. He was aged 22.

My son lives in his own home (mortgage being paid by his sister). Support staff are not trained and the “team” are mostly casual workers with little or no orientation to my son’s needs. This creates enormous stress and has negative impacts on his health and every aspect of his life.

I am almosot 70 and have to work to meet the costs of my son’s care as many of his needs are not subsidised. His DSP income does not cover his expenses e.g. 12

• 15 daily medications, CPAP machine and replacement parts, modified vehicle, custom seating and bedding and customised clothing and shoes. Due to ehypothalamic damage my son’s weight has increased from 80 kgs to 250 kgs and he cannot fit public transport, normal cars, standard chairs, and even the largest sized, commercially available clothing and shoes.

I have to follow up on most of the medical issues e.g. keeping numerous scripts up to date, co-ordinating local and interstate medical appointments with doctors, specialists and therapists, ensuring equipment is maintained, applying for funding grants, purchasing and maintaining vehicle.

Although my son has an Independent Accommodation Support Package the guidelines are not followed by the service provider and he has little say in the service he receives.

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

Ensure support and equipment is available when needed, People with a disability can plan their lives and pursue their goals and dreams, The ability to receive services when needed and in the way that suits the person

The most important services for the NDIS to provide are:

Equipment and home/vehicle modifications, Education support (technology/services/equipment), Case management, planning and coordination

I support the introduction of the NDIS.

People with disabilities will have the opportunity to decide what services they require.

Funding can be used in a more creative way to suit the needs of the individual.

Funding packages may cover a person’s needs for accommodation and/or home management, transport, support, equipment, therapy, community access,

**Employment and Education Support.

I agree for my submission to be made public

Regards,

Ms Julie Gerrish**