NDISFutureGenBill Submission
I am writing this submission as the parent/Nominee/Enduring guardian of my 37 year old daughter who has Down syndrome. She currently lives in a SIL home and attends Life Skills programs 3 days week. She accesses the community for personal and social reasons by using her social and community participation funding. She has been living independently from her parents since she was 21.
I oppose the bill in every aspect with the exception of the Minister having the power to price fix, as I believe that prices set in the Price Guide were too generous from the outset.
Several of the proposed changes to this bill are genuinely concerning to me and will impact my daughter’s life drastically.
50% Reduction in Social and Community Participation
The consequences of this funding slash would stop my daughter independently accessing the community, limiting her to Life Skills programs. Her access to community health, allied health services and exercise resources as well as social settings would be minimised posing a genuine threat to her health and wellbeing. Her choice in how and when to socialise in the community and with whom would no longer be a possibility for her without funding. These are basic life experiences that all able-bodied people in the community embed in their daily lives. As the majority of SIL funding is a 1:3 ratio, support staff cannot leave the house with one client. She is also living in a regional small town 17 kms from the nearest larger centre with minimal public transport. These factors need to be taken into consideration when evaluating access to community. Every participant has unique requirements that must be considered when reviewing funding decisions.
There is no blanket decision, or a one size fits all, that benefit the majority of participants. The NDIS was developed to give people with disability choice and control and to provide opportunities to lead full, meaningful lives. This will not be a reality for many people if budgets are halved. The answer to budgeting for NDIS sustainability cannot be found in global budget slashing for every participant. NDIS participants need to be assessed individually.
Curtailing Reassessments and End Dates
Reassessments are one of the few ways participants can respond to changes in their lives. My daughter has experienced a scenario that this bill intends to recreate. Since first assessed for the NDIS her funding was inadequate and her plan has been rolled for many years over without any consultation with planners. Her plan was finally accepted for a review of circumstances this year. Restricting the reassessment process and creating end dates to replace reassessments in old framework plans gives the NDIA opportunity to transition participants to a new framework plan. New framework plans are not reviewable. Plans with End Dates will be nenewed automatically, potentially with the same funding, however the scope of alteration the minister could make to new plans is unclear. Automatically renewed plans are devoid of any consultation with the participant and are not reviewable decisions.
If these blanket changes are implemented, participants with changing needs will be ignored and only those with strong advocacy will have any chance of requesting reassessment.
Restricting Coordination of Support (COS)and Plan Management choices
This is a step backwards. Previous to NDIS, Aged Care and Disabilities gave funding to an organisation on behalf of a person with disability. This system proved to be inequitable, open to abuse with no transparency or accountability and limiting for a participant’s choice and control. Client’s were unable to request where and how their funding were used. Taking choice away from participants and mandating they choose from a departmental list of COS and Plan Management providers will recreate that same environment.
My daughter’s COS meets with her to discuss her needs and is available to attend meetings face to face with her other supports. They have built a relationship of trust and support which is crucial, especially now we are currently dealing with some very serious safeguarding issues. With local knowledge her COS can access and recommend programs and support staff. We have chosen this COS because of the person-centred approach they offer rather than being a faceless name among hundreds of other clients. We also have control over the budget to focus on issues of importance.
If this crucial role is handed to large companies outside of the regional area, we are at the mercy of the provider with no transparency around their use of NDIS funds that were once a part of my daughter’s budget. Considering the COS budget in my daughter’s plan is the least amount for any service, and they offer such a pivotal, independent role to her, I do not see any benefit to any participant for this service to be extracted from plans. I strongly argue that participants keep their choice and control with this service.
I hope the process of a senate hearing gives voice to the people who are affected by this Bill and that the government find alternative ways to maintain sustainability without crippling the support systems that are vital for a quality and meaningful life.