Submission 2531
Carers Statement- Formal Response to NDIS “for future generations”
My name is , I am 41 and a single mother. I have multiple disabilities and disorders and I am currently responsible for the care of four other individuals with disabilities, two of whom are my biological children, three of whom reside with me in my home.
Individuals with disabilities I care for referred in this document as caree’s include:
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(19), just completed his Tafe course working full time and has a current NDIS plan, disabilities include Autism and ADHD
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(16), currently attending VCE, participating in the school musical and a VET course, and has a current NDIS plan disabilities include Autism, ADHD, and GAD. (both children/young adults should be entitled to exercise choice and control over their own supports, and struggle with changes within their home environment)
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(65), locked facet joints, ambulatory wheelchair user. Lives in a separate residence, has a current NDIS plan.
• (known legally as , 22) Spends most days in front of her
computer, struggles to socialise with the home, has a current NDIS plan disabilities include Autism, ADHD, intellectual difficulties.
My knowledge and care spans years, my patience is heralded as a virtue by my caree’s and professionals alike and the growth of my own abilities has been exponential over my caring journey, but it comes at a steep and unredeemable cost. If any of the staff at NDIS actually read my carers statements, they may have understood the severe pressure of caring for not only ONE disabled person but MULTIPLE, whilst also dealing with a degenerative disorder, various other health issues and familial estrangement that leaves your disabled sister in your care. My role/job is such that I know everyone’s medications, medicinal contraindications, appointment schedules for over 20 medical professionals and therapists, I liaise with almost every professional, attend appointments for all 5 of my caree’s. I organise two households, coordinate five transportation schedules; as I am the only fully licensed driver. I am a nurse, a comfort, a rational mind, and a problem solver. I hold every employer, school, disability service and NDIS representative responsible for every promise and every standard they set. EVERY issue is my issue.
The cost of being a carer to multiple people has been borne by me and my other caree’s. I have lost income, I have lost opportunities, I have had to give up my volunteer role, my university degree as well as the future I sought with that degree, and have had to seek further assistance for my mental and physical wellbeing to be able to continue bearing a burden that is heavier than anyone really understands. The physical and mental repercussions of this extra burden, on top of my other roles, has been immense and all encompassing.
The decisions of the politicians and the NDIA lack foresight. They do not consider the impact on OTHER NDIS participants or the CARER. I am the ONLY informal support for 4 other humans. How am I to continue, when the caree’s I do have will be looking to me for more? If I were paid only $60 an hour (less than the full weekday day rate for support workers) for 67.5 hours of care per week, not taking into consideration weekend rates, overnight active rates, minimum shift length, the government would be paying me over $200,000 a year (gross) for my role.
Submission 2531
I can tell you where NDIS funding has been life changing and where it has fallen remarkably flat. NDIS funding doesn’t magically appear in your bank account to make everything easier. It doesn’t create ramps at your favourite coffee shop, it doesn’t provide water wheelchairs to use the local pools, it doesn’t create parks or waterfront walks that are accessible, it doesn’t help you being asked to fill out paperwork you don’t understand, or stop you from feeling embarrassed or ashamed when people don’t understand why you’re confused or angry or upset.
I am sooo close to the end of my very thin tether. The lack of proper support for my caree’sat the start of their NDIS journey, to the lack of care or empathy from the NDIA, and the extreme burden I carry trying to provide the care that my caree’sneed and deserve is endless, thankless, and financially crippling.
All of my caree’s want to be able to live their own life, rather than burdening me with more of their care. This goal to lead an independent life has been written in their NDIS plans. If more of your NDIA employees were trained in the medical field, I am sure that half the money used to state Functional Capacity, and provide complex reports constantly stating the need for certain supports would be unnecessary. To then have these reports disregarded and fought against stating “these supports are not related to your disability support needs” is incredibly baffling . I am sure that the medical community would love to see the research that indicates NDIA’s findings in such matters.
As one example of the NDIA not taking into consideration the WHOLE situation. My sister faces significant barriers in daily living, and was denied SIL funding despite a FCR stating her level of care. She is reluctant to admit her limitations and struggles to seek help, leaving the burden of her care on us—her family. Whilst the NDIS may see the lack of using formal support as proof that providing SIL’s funding is unnecessary and superfluous, the duplication of some supports in the ONGOING TEMPORARY household would lead to a greater burden on the house as a whole. Currently supports are conducted based on the family unit as a whole, taking into consideration the needs of ALL family members. To duplicate these services in the current environment; for example: meal planning, prep and grocery shopping, would require extra work, finding extra storage space eg:fridge/freezer, storing groceries, higher household running costs, a larger kitchen, and more social interaction for other Autistic members of the house. This is just an example for meal planning and prep work, let alone other tasks. It is excessive given that the space provided adequately for the residents prior to Remi moving in, disadvantages residents already considered vulnerable, and completely disregards Remilia’s goal to find an independent living situation. This is just ONE caree and ONE of their issues.
This is a list of SOME (not all) of the assistance I provide my caree’s with
- Meal Planning and Preparation: Grocery shopping, cooking, and cleaning up. - This includes issues with decision making, understanding cost price analysis, budgeting skills, communicating with strangers, loud distracting overwhelming environments, struggling to follow multiple steps, sensory overwhelm (touching wet/cold products, hot pots/pans, noise of fan, people talking, instructions) anxiety.
Submission 2531
Cleaning up afterward, which is critical to maintaining a safe and hygienic living environment.
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Administrative Assistance: Filling out forms, managing bills, and navigating government systems like Centrelink, budgeting, financial planning etc. - Including questions they may not understand, specific terminology, interacting with strangers, emotional overwhelm/frustration, explanations, allowing time for them to grasp concepts and ideas (which can take days), it also requires them to be focused on these issues to have their interest and cooperation, otherwise it can lead to meltdowns and emotional withdrawal. This may take several days to recover from and impacts memory.
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Transportation and Guidance: Attending medical and personal appointments with help to communicate needs. - This involves impairments mobility, assistive technology with communicating to therapists, answering questions, talking with receptionists, planning logistics and time management, remembering items (keys, water, food, referrals), scheduling and recording follow up appointments, failure to organise meet ups at appropriate venues which leads to non-attendance and withdrawal from events. - Transportation can also be an issue as I am the only licensed driver within the family unit and have to organise medical, community, social and emergency events with mobility aids and often prioritise accordingly.
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Emotional Regulation Assistance: help with recognizing emotions, predicting episodes of emotional dysregulation, supporting emotional dysregulation and redistributing household tasks when they are overwhelmed or incapable. - This may look to other people as completing tasks, but also includes reminders for personal hygiene matters (brushing teeth, showers, shaving, changing underwear regularly), struggling to complete a task FULLY (leaving jobs half completed), tasks that they doesn’t understand or that they can’t do (gardening, cleaning gutters, handwashing dishes or clothes, deep cleaning appliances/residence, general household maintenance) - When integrated with events this may also include non-attendance, withdrawal from social engagements, wanting to leave before other members of the family.
I implore the Government to make a decision that benefits the whole situation, and should they not be able to provide adequate support through the NDIS, that they be prepared for accelerated costs to the medical system, the communities, the hospital system, the housing system,and in some cases homelessness or death. For you are bound to see the needs of your people be borne in some way, and I fear, as a carer, that the families who are already close to imploding may bear the brunt of this decision. People like me, will also end up needing NDIS support for the cost is not just psychological, it’s physical.
I would also like to question the statement made by the NDIS delegate that “other supports which are more cost effective and can give you the same or better outcomes.” Where are these supports? Who puts them in place? Who can provide my caree’s with a safe environment, who can care for them, cook for them, help with their medical information? Because It can not continue to be me.
Thank you for your time