REINSTATE NDIS funding for Autistic children with high care, early intervention needs!

Movement:NDIS Funding
Recent signers:
Sue Cole and 11 others have signed recently.

The issue

Fletcher, a cheerful and nature-loving four-year-old boy with a passion for puzzles, faced significant challenges at the beginning of his life. Born prematurely at 30 weeks alongside his twin sister, he weighed a mere 822 grams and suffered from a congenital bowel malformation. To ensure his survival, Fletcher underwent multiple critical bowel surgeries and spent the initial four months of his life in the Neonatal Intensive Care Unit (NICU), two of which were spent on ventilation and life support. Even after discharge, he required oxygen therapy for the subsequent three months. At eight months of age, Fletcher was diagnosed with Quadruple Cerebral Palsy, resulting in a low probability of independent ambulation.

Fletcher successfully overcame the initial challenges and demonstrated remarkable progress through intensive early intervention. His gross motor skills have now reached or surpassed the expected developmental milestones for his age.

At the age of three, Fletcher was diagnosed with Level 3 Autism Spectrum Disorder (ASD). He attended a mainstream daycare with his twin sister. Despite every effort to facilitate his inclusion, such as providing inclusion support, daycare therapy sessions, and a speech-generating iPad, Fletcher struggled with emotional regulation and began to regress in his progress. This regression resulted in the issuance of up to ten incident reports daily and culminated in a successful escape attempt, during which he scaled a fence and reached the other side without being noticed.

The AEIOU program was recommended for Fletcher by his pediatrician, occupational therapist, and speech therapist. This Queensland government-funded program is specifically designed to meet the needs of severely autistic children who require a high level of care in all daily activities.

Prior to enrolling in the AEIOU program, Fletcher exhibited non-verbal communication and was evaluated to have significant developmental delays, with some developmental milestones only corresponding to a six-month-old infant. Remarkably, within the first month of attending the program, Fletcher achieved a breakthrough by singing a song for the first time. This pivotal moment solidified the necessity for Fletcher to continue his education at AEIOU. Since then, he has demonstrated remarkable progress. Not only does he effectively communicate his needs through his iPad, but he has also developed the ability to spell out specific words, such as "milk," "shower," "bath," and "open."

Despite the progress made, Fletcher continues to exhibit significant sensory regulation needs. As a result, our family is unable to participate in typical activities that a child of his age would be able to engage in. We are primarily confined to the home environment, AEIOU, and the residences of family members.

Despite having comprehensive and appropriate documentation and reports from multiple allied health professionals, Fletcher's recent NDIS plan review was denied on the grounds that the proposed supports were not deemed to be effective or beneficial. 

An internal review request has been submitted, but there is no information on when it will be processed.

Currently, Fletcher only has four weeks of funding remaining. After this, his enrollment at the AEIOU will be terminated or will require private funding. The annual expenditure of $80,000 is beyond our reach due to the ongoing economic challenges.

If his enrollment is terminated, it will have extremely detrimental effects on Fletcher in all aspects.

Our family is not alone in this situation. Many other families are facing the same issue with no resolution in sight.

 

Please sign this petition to demand urgant action and an urgent review of Fletcher's plan and reinstatement of funds from the NDIS. This is not only for Fletcher but also for all other AEIOU families who are unsuccessfully navigating this absurd issue within the NDIS.

 

7,062

Recent signers:
Sue Cole and 11 others have signed recently.

The issue

Fletcher, a cheerful and nature-loving four-year-old boy with a passion for puzzles, faced significant challenges at the beginning of his life. Born prematurely at 30 weeks alongside his twin sister, he weighed a mere 822 grams and suffered from a congenital bowel malformation. To ensure his survival, Fletcher underwent multiple critical bowel surgeries and spent the initial four months of his life in the Neonatal Intensive Care Unit (NICU), two of which were spent on ventilation and life support. Even after discharge, he required oxygen therapy for the subsequent three months. At eight months of age, Fletcher was diagnosed with Quadruple Cerebral Palsy, resulting in a low probability of independent ambulation.

Fletcher successfully overcame the initial challenges and demonstrated remarkable progress through intensive early intervention. His gross motor skills have now reached or surpassed the expected developmental milestones for his age.

At the age of three, Fletcher was diagnosed with Level 3 Autism Spectrum Disorder (ASD). He attended a mainstream daycare with his twin sister. Despite every effort to facilitate his inclusion, such as providing inclusion support, daycare therapy sessions, and a speech-generating iPad, Fletcher struggled with emotional regulation and began to regress in his progress. This regression resulted in the issuance of up to ten incident reports daily and culminated in a successful escape attempt, during which he scaled a fence and reached the other side without being noticed.

The AEIOU program was recommended for Fletcher by his pediatrician, occupational therapist, and speech therapist. This Queensland government-funded program is specifically designed to meet the needs of severely autistic children who require a high level of care in all daily activities.

Prior to enrolling in the AEIOU program, Fletcher exhibited non-verbal communication and was evaluated to have significant developmental delays, with some developmental milestones only corresponding to a six-month-old infant. Remarkably, within the first month of attending the program, Fletcher achieved a breakthrough by singing a song for the first time. This pivotal moment solidified the necessity for Fletcher to continue his education at AEIOU. Since then, he has demonstrated remarkable progress. Not only does he effectively communicate his needs through his iPad, but he has also developed the ability to spell out specific words, such as "milk," "shower," "bath," and "open."

Despite the progress made, Fletcher continues to exhibit significant sensory regulation needs. As a result, our family is unable to participate in typical activities that a child of his age would be able to engage in. We are primarily confined to the home environment, AEIOU, and the residences of family members.

Despite having comprehensive and appropriate documentation and reports from multiple allied health professionals, Fletcher's recent NDIS plan review was denied on the grounds that the proposed supports were not deemed to be effective or beneficial. 

An internal review request has been submitted, but there is no information on when it will be processed.

Currently, Fletcher only has four weeks of funding remaining. After this, his enrollment at the AEIOU will be terminated or will require private funding. The annual expenditure of $80,000 is beyond our reach due to the ongoing economic challenges.

If his enrollment is terminated, it will have extremely detrimental effects on Fletcher in all aspects.

Our family is not alone in this situation. Many other families are facing the same issue with no resolution in sight.

 

Please sign this petition to demand urgant action and an urgent review of Fletcher's plan and reinstatement of funds from the NDIS. This is not only for Fletcher but also for all other AEIOU families who are unsuccessfully navigating this absurd issue within the NDIS.

 

The Decision Makers

Jim Chalmers
Shadow Treasurer
Anthony Albanese
Prime Minister of Australia
Steven Miles
Premier of Queensland
Bill Shorten
Leader of the Opposition
NDIS
NDIS
Queensland Government
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