From: To: Subject: Fw: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 24 January 2013 8:46:27 PM

Dear Carol,

Apology to ask this of you , please replace again–promise third time lucky. We are a carer group that is focused on developing housing and I was asked to add more to our submission. We have 37 families in our group most over 60—all concerned the NDIS will not deliver any large packages or capital cost for accommodation. Hopefully these submissions may give a clear picture of our concerns. The Carer Alliance had several round table discussion on the NDIS, I helped to organise one —not good hearing the statements from families concerning the problems they face on daily basis. My son is 41 and non verbal, hearing the stories of abuse, to our people was terrifying. Accommodation was a burning issue at each focus group. As the government funded these round table discussions, hopefully they will take on board our concerns.

The NDIS will be an answer to our prayers –but it must be done properly. or we will be in the boat.

Many Thanks Marie

Submission to Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012

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.

We have an unfair, under-resourced, under-funded disability system that functions in a state of crisis in all areas.The support hours needed to provide for an individuals needs and their carer,is extremely inadequate.No body is considering the age of the carer and the 24/7 care they provide to their loved one.Many ageing carers will not be able to continue this level of care into the future. Trying to access flexible quality of care respite for a person needing assistance in all core areas is impossible–or the placement of a non verbal person in a house to be abused is terrifying to the person and the carer. Surely over night in home respite could be made available to ageing carers. No one wants to protect our most vulnerable people —the complaint system is not user friendly to families. Families that are caring for a person with a dependant disability,a strong advocate is a must,this will give carers a chance to pursue the complaint. Transitional planning and supported accommodation for people with high support needs, has to be addressed NOW.Ageing carers can not wait till 2020 by then the crisis will be insurmountable.Some carers are in their 80’s now , where is their choice to retire?. Information on services and supports have to be more widely available, regional carer support networks could address this problem. Skilled caring staff and appropriate staffing levels have to be provided in day services and houses.Improved training and better pay for staff. The disability system needs to support the people its meant to support,to allow all Australians full inclusion to participate in our society

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

• The ability to receive services when needed and in the way that suits the person,
• People with disability/family will influence the types of support and services offered,
• 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:

• Accommodation options,
• Flexible in-home/outside home respite,
• Case management, planning and coordination.

I support the introduction of the NDIS.

“ Australians with a disability have been waiting for many years for change. They cannot wait any longer“ ( Shut out 2009) I wonder how much bite has this statement had to address the current unmet need for individual tailored support/service to both the person with a disability and their carer. (NONE)

The Productivity Commission report 2011 “ the current disability support system is under-funded , unfair, fragmented, and inefficient, and gives people with disability little choice and no certainty of access to appropriate supports.

The NDIS will fund long -term high quality care and support Nationally consistent Person-centred and individualized Greater choice and control. Page 23 of the overview of the PC report made 12 recommendations, these need to be followed. The concerns that families have is that gaps and concerns are beginning to emerge, priorities have to be sorted out before any roll out. Capital funding for accommodation was to be included in the NDIS. Ageing carers have to be given a priority to relieve their burden of care ––this seems to have been removed from the taskforce agenda. No one has mentioned these two elements —are families expected to care till they die ? If capital funding for construction of supported housing is not made available early in the introduction of the NDIS, nothing will change from the current situation. People may have packages to cover the cost of their accommodation but still have nowhere to go due the critical shortage of such accommodation. Everyone has been led to believe the scheme will have a full roll out by 2020––If packages are allocated, how will we have choice if there has not been an early release of capital funding for the bricks and mortar?.( No one is talking packages of $70.000––$123.000 for individuals to live in supported accommodation) WHY?

Caring families are concerned, unless we have a guaranteed legislated bill to follow all the recommendations of the Productivity Commission.The NDIS will not deliver real outcomes. Those of us that have the privilege of remaining lifelong carers, wait in hope that taskforce will do the right thing in setting priorities.

Sincerely hope the NDIS will offer improved services/supports for all Australians to have quality of life and a enhanced lifestyle. As a nation we all have to take responsibility and push for the NDIS to provide a long term system of support & services as promised. ( Efficient, Equitably and Sustainable)

A independent body as promised to oversee the system especially to make sure the service providers are accountable, to providing high quality of care and a safe environment. Reform is needed to the Special Disability Trusts to allow parents/carers to invest money in the development of innovative housing models, working with partners and the community this could complement a NDIS. The Disability Investment Group 2009 Key findings “ Of all the disabilities services, the most significant unmet demand and the greatest anxiety for families relates to housing and accommodation. Why has no one taken notice of this report.? Who know is going to have

Submission Regarding Priority Placement of Disability Accommodation in Task Force Agenda

The following letter was submitted:

To both sides of government please make this happen, and give people with a disability and their carers hope for a positive future.

(Full roll out of a NDIS)

I agree for my submission to be made public

Regards,

Secretary Community Lifestyle Accommodatioin Ltd Marie Hell