What we sent :

Dear Senator Reynolds,
Our names are Cheng Yeo and Rina Bowden. We lead a subcommittee for CleftPALS Victoria lobbying for change to the NDIS to have the cleft palate condition recognised and accepted as a disability under NDIS so that cleft-affected individuals can get the treatment they require. CleftPALS Victoria is a small, volunteer run charity supporting individuals and families with the cleft condition - we also support South Australia and Tasmania.
One in 700 babies born in Australia have a cleft, it is the most common birth defect in babies born every year. These babies will face a lifetime of surgical interventions - oral, maxillofacial, dental - to restore form and function so that they can eat, drink and breathe normally.
We have a currently-being-peer-reviewed paper from Speech Pathology Australia stating the importance of speech services after every surgical intervention so that cleft-affected individuals learn to use their newly reconstructed face and mouth muscles.
We have impact statements from families around Australia - in video and written form. We have been approached by the media with stories of how families have been impacted, due to a recently created petition that we are sharing across social media.
https://www.change.org/.../speech-pathology-included-in
We have asked members of our 1300 cleft community to write letters to their members of parliament, asking for attention to this matter to be made to yourself. Within our own social media networks across Twitter, LinkedIn, Instagram and Facebook, we have also encouraged our friends/famil/colleagues to write to their MPs.
We have letters of support from Heads of Craniofacial units and Heads of Speech Pathology units from the Royal Children's Hospital and Monash Children's Hospital at Monash Children's Hospital in Melbourne, and Heads of Speech Pathology Units at Westmead in Sydney. We are gathering more letters of support as I write, including:
- A former craniofacial surgeon at RCH, who is now the Plastics Surgeon in Chief at the Boston Children's Hospital and the Kletjian Professor of Global Surgery.
- A Head of Speech for a Northern Territory health service concerned at the lack of access to speech services for Indigenous children in NT.
We are writing to you, to respectfully request a meeting so that we can discuss the issue further as we believe equitable access to the ability to eat, speak and breathe normally is a human right, and the right to access healthcare a birthright to all who contribute to the national GDP of this country. Thank you in advance for your attention to this matter.
For full transparency, we will also be approaching Senator Rushton in her capacity as Minister of Family and Social Services, and Senator Hunt in his capacity as Minister of Health.
Thank you,
Cheng Yeo and Rina Bowden
 

CHANGE.ORG
Sign the Petition

And reply Not the response we should get:

MC22-000432
Ms Cheng, Ms Rina Yeo and Bowden
CleftPALS Victoria
cleftpalsvic@gmail.com
Dear CleftPALS Victoria
Thank you for your letter of 9 April 2022 to Senator the Hon. Linda Reynolds,
Minister for the National Disability Insurance Scheme, about access to the National
Disablity Insurance Scheme (NDIS) for individuals with the cleft palate condition.
The Minister has asked me to reply on her behalf.
To be eligible to acces the NDIS, a person must demonstrate they meet the age,
residency and disability or early intervention access criteria as outlined in the
National Disability Insurance Scheme Act 2013. Each application to access the NDIS
is based on the applicant’s individual circumstances and the evidence they provide.
Where an individual with a cleft condition applies for the NDIS, their eligibility is not
determined by the diagnosis of their condition. Rather, the National Disablity Insurance
Agency (NDIA) will seek to understand the impairment/s that arise from their condition,
how this impacts their ability to carry out everyday tasks, and whether these impacts
are likely to be lifelong.
A person may meet the disability requirements if they have a disability caused by a
permanent impairment. The evidence must also demonstrate theat the person has
substantially reduced functional capacity to do one or more daily activities, that that
supports will be required for their lifetime.
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A person may met the early intervention requirements if they have a permanent
impairment, or if they are a child who has a developmental delay. There must also be
evidence that the provision of early intervention supports will reduce the person’s
future need for supports in relation to disability, and that the early intervention support
is most appropriately funded or provided through the NDIS.
It is important to note that when considering the disability and early intervention
requirements, the NDIA does not assess the permanency of a condition. It is the
permanency of the impairment that is assessed. This means we consider whether any
known, available and evidence-based treatments would be likely to remedy (i.e. cure
or substantially relieve) the impairment, or whether the impairment requires further
medical treatment or review for its likely permanency to be demonstrated. This may
include treatments such as surgical intervention or speech services which are
commonly prescribed for a cleft palate, as you have noted.
The NDIS is not designed to replace existing mainstream services responsible for
providing supports to people with disability, such as the health system. This means
where a support is most appropriately funded by another system, the NDIS will not
fund that support. For example, the NDIS will not be responsible for clinical treatment,
including rehabilitation or post-acute care following a recent medical or surgical event
(rule 7.5 of the NDIS Suppports for Participant Rules 2013).
There are a number of supports and services provided by government and the
community sector for people with disability across Australia. If a person does not meet
the eligibility requirements to access the NDIS, guidance can be provided by Local
Area Coordinators and Early Childhood Partners to engage with other support
systems.
Page 3 of 3
Thank you again for writing.
Yours sincerely
Cassie Hammond
Branch Manager
National Access and Reviews Branch
National Disability Insurance Agency
22 April 202