NDIA Accountability Project

Experiences of children with cleft lip and palate accessing NDIS support

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Submission to the Joint Standing Committee on

the National Disability Insurance Scheme (NDIS)

Inquiry into: Capability and Culture of the NDIA

Introduction and Background

CleftPALS Victoria and CleftPALS NSW welcome the opportunity to provide input into the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry into Capability and Culture. This submission will address the experiences of the cleft community who have engaged with the NDIS application and appeal process.

CleftPALS Victoria and CleftPALS NSW are registered charities. We are a disability advocacy and support group for cleft-affected individuals and their families living in Victoria, Tasmania, NSW and South Australia.

1 in 700 babies are born each year with a cleft. Clefts are the most common birth defect in babies born each year. We support families by providing an emotional peer support network as children born with a cleft encounter feeding and communication challenges due to a structural defect of the palate, and other developmental challenges like conductive hearing loss. Many cleft children benefit from speech therapy as surgery and dentition changes the structure of the face and mouth. Families also report their children face mental health and self-esteem issues throughout childhood and into adulthood as they look and sound different.

CleftPALS Victoria and CleftPALS NSW believe that cleft affected Australian children should qualify for NDIS, as early intervention offers children the best chance to thrive later in life. CleftPALS Victoria and CleftPALS NSW are genuine in our intent to collaborate with the NDIA to help ensure our children can fully participate in family, community and social life.

Submission

CleftPALS Victoria and CleftPALS NSW are fortunate that Speech Pathology Australia, the governing body for speech pathology (an allied health service that many cleft children and adults require as part of their development), has written a policy brief to assist our families in securing NDS funding.

We enclose the policy brief as part of our submission.

Our families have expressed concerns that their children are becoming ineligible for NDS after they reach the age beyond the ‘early intervention’ cutoff, a time when families feel the need for allied health services are the greatest because their children reach a developmental milestone of recognising that they sound and look different from other children, and many encounter self-esteem and mental health issues as a result of being bullied and excluded by their peers. Families who cannot afford to pay privately for speech therapy, once their child becomes ineligible for NDIA, observe their child’s speech intelligibility regress. Regression in speech impedes ability to communicate, which then gets into a vicious circle of compounding mental health and self-esteem issues as their child becomes increasingly isolated and excluded from their peers.

Family Stories

We submit stories from three CleftPALS families; one from New South Wales, Victoria and Tasmania who have all engaged with the NDIA.

Our families and committee members from CleftPALS Victoria and CleftPALS NSW would be happy to appear in person to provide further insights into the issues facing our families with securing NDIS support.

The contact details of the families in this submission can be provided through contact with CleftPALS NSW or CleftPALS Victoria.

Many thanks,

Timothy Devlin Cheng Yeo CleftPALS NSW President CleftPALS Victoria President

Joint Standing Committee on the National Disability Insurance Scheme

Committee Secretariat PO Box 6100 Parliament House Canberra ACT 2600 ndis.joint@aph.gov.au 3rd October 2022

Dear Committee Secretary,

My name is Timothy Devlin and I am the President of CleftPals NSW and father of a four year old Joshua Devlin. Joshua was born on the 15th April 2018 with a bi-lateral cleft lip and palate (CL+P) and a moderate hearing loss. Josh is a happy and health 4-year-old, he is outgoing friendly and chatty, but due to his CL+P and hearing difficulties his speech is largely unintelligible to all but his close family.

I am writing to contribute my families experience in applying for NDIS.

Joshua’s Story

  • April 2018 – Born bi-lateral CL+P. Failed newborn hearing screening test at Blacktown Hospital. Referred to Westmead Children’s Hospital for Cleft lip and palate clinic for ongoing support.

  • May 2019 – Surgery to place grommets in his ear drums to improve his hearing with a referral to Hearing Australia for support and follow-up.

  • October 2018 – Plastic surgery via the Westmead Childrens Hospital cleft clinic to repair his lip and soft palate.

  • February 2019 – Ongoing issues with solid food getting stuck in palate fistula, nasal regurgitation, gagging, issues swallowing etc.

  • August 2019 –Re-repair of Joshua’s soft palate and repair of his hard plate. Grommets replaced to improve hearing.

  • October 2019 – Placed on ‘18 month’ waitlist for speech pathology sessions with community health provider.

  • March 2020 – Commenced privately funded speech pathology sessions costing $170 per hour as a stop gap measure.

  • April 2020 – Applied for NDIS via early childhood partner NDS provider Northcott.

    • Told we didn’t qualify for ‘early connection’ services as Joshua didn’t have enough interdisciplinary evidence of long-term disability. Joshua was assessed using irrelevant questions based on standardised checklists that didn’t address his specific conditions.

    • It was clear that the Northcott assessing staff had never heard of or understood what a cleft lip and palate was. It was also clear they didn’t have any standard operating procedures for assessing a child with cleft lip and palate conditions.

  • March 2020 – Hearing assessment continues to show mild loss due to eustachian tube disfunction and because grommets are once again blocked. Speech continues to slide backward relative to his peers.
  • May 2020 a. Josh formally diagnosed with and expressive langue / language acquisition delay. b. Pay for private consultation with Ear Nose and Throat specialist who writes a referral to Hearing Australia for them to issue a Pronto hearing aid device.
  • May 2021 – First Speech pathology session completed with Western Sydney Local District seven months after going on the waitlist.
  • October 2021 – Re-applied to Northcott for NDIS based on new hearing and speech assessments and lack of progress in language development. We received a new assessor (who was also a supervisor) who indicated her surprise that we had been knocked back the first time. She applied to the NDIS directly on our behalf and was successful.
  • March 2022 – Completed last of eligible community health speech pathology sessions and transitioned to NDIS funded speech pathology sessions.

Joshua’s NDIS funding is based on early intervention for a child under 7 years old and is mainly due to his hearing issues. As CL+P itself is not a ‘listed’ condition he did not automatically qualify for NDIS and the obligation was on us to provide enough ‘evidence’ from his care teams to qualify. I am concerned that once he is 7 years old his early intervention funding will be removed, and we will have to pay for his ongoing speech pathology session out of pocket.

Like a lot of families affected by CL+P our journey to receive NDIS and allied health support has been long and confusing. I put my family’s success in securing support down to combination of us having the time, resources, and education to navigate the system and luck that we eventually met an assessor that was willing to champion Josh’s case.

As the president of CleftPALS this leaves me deeply concerned for other families who don’t have the same access to time, resources, and education. CleftPALS families often report ‘falling through the cracks’ or coming up against needless administrative hurdles.

I would be happy to appear in person to the committee to further illuminate the issues cleft affect families are having in securing appropriate medical support.

Regards,

Timothy Devlin CleftPALS NSW President

Jack and Janeane’s Story

My name is Janeane. I am mother to 10-year-old Jack. We live in Gippsland, Victoria. Jack was born with a unilateral cleft lip and palate. His father Darren (deceased), had a cleft lip.

Jack’s cleft was deemed a wide cleft by his treating physicians. The lack of available tissue has meant his cleft has been challenging to repair. Jack has had multiple operations to attempt to seal the palate, however there is still an opening which makes him sound nasally and his speech difficult to understand. Jack also has a conductive hearing loss, a common condition for children with a cleft.

Jack’s story:

  • 2012: Born with unilateral cleft lip and palate. Jack passed the newborn hearing test. He had significant feeding challenges. My sister (who is a Maternal and Child Care Nurse) noted Jack was not meeting developmental milestones, and advised me to seek help. I went to Maternal and Child Health who tested Jack at 12 months old and found he was delayed and needed Early Intervention. Further assessment showed Jack had global development delay. NDIS was not in place at this time, and we received the support of a speech pathologist through Scope after waitlisting for 12 months.
  • At 7 months, Jack had his lip repair. Grommets were inserted as part of the same surgery. Just before theatre, was the first time we had seen an ENT specialist.
  • 2013: At 12 months, Jack had his first palate repair and insertion of grommets after I requested another hearing test.
  • Jack failed multiple hearing tests despite the grommet insertions. We did sign language with Jack, and he used assistive technology (iPad) to help communicate with us. Jack had intensive speech therapy with Scope.
  • 2014 - 2016: Between the ages of 2–4 Jack had further surgeries to attempt to seal the fistula in his palate.
  • 2017: Jack had his tonsils and adenoids removed to improve breathing. Jack also had a pharyngoplasty to give him better speech.
  • Jack successfully passed a hearing test conducted by RCH. However, this does not mean he hears well enough: he cannot hear when there is background noise in a classroom or whenever he has a cold. The RCH has requested a further hearing test locally, but there has been no response from the local provider where we live.
  • Dec 2019: Jack’s Speech Therapy stopped at this point as he turned 8 years old, as we were told he no longer qualified for early intervention speech therapy.
  • Covid meant delays and lack of services. Speech pathology services are very hard to get into without NDIS funding. We live in regional Victoria – there is a lack of therapists in the area and it is extremely expensive to fund for Jack’s speech therapy needs privately.
  • 2021: Jack had a plate inserted into his mouth to expand his upper jaw, in preparation for his bone graft surgery. The plate affects his speech and eating. He is unable to suck when the plate is in place. This has meant he gets singled out and teased incessantly at school. Food comes out of his nose, and he suffers excess nasal secretions. His self-esteem and mental health has suffered greatly, as he is embarrassed by the secretions and the trouble he has with eating/drinking normally. The plate must remain in place until his bone graft surgery. There is uncertainty around the date of surgery due to the backlog of surgeries at Royal Children’s Hospital.
  • In 2022 Jack saw a Paediatrician who diagnosed him with ADHD. He also has asthma. Access to a respiratory specialist is required due to obstruction in airways: this too is delayed due to COVID backlogs.

When Jack was denied NDIS, the office in Bairnsdale had closed so there is no opportunity for any face-to-face contact. It has taken me multiple calls to NDIS to have Jack’s case reviewed. I was told he was approved, then told again he was not approved. The NDIA told me there is an inflight investigation and that I would be contacted. I am still waiting for that call.

For my Early Intervention application, my experiences with NDIS left me feeling cold.

  • The application and assessment process are beyond the skills of the average Joe to work out. I received no assistance or explanation of the process, which I desperately needed.
  • The NDIS assessment process is cold and unempathetic. It does not recognise that there is a human being on the other side, and the family that supports him.
  • NDIS does not place the wellbeing of the child and his carer/family first. I felt like I was being blown off every time I had to deal with NDIS assessors.

After Jack’s recent diagnosis of ADHD, I was advised to try and apply for NDIS again. I am now trying to apply for NDIS again. Phone contact is my only route at the moment due to the closure of the Bairnsdale NDIS office. I was told that my application has gone for assessment at a higher level, and there is no guarantee that Jack will be successful. I am desperate to help my son and it feels like I am starting all over again.

The system really fails the cleft community in that it does not recognise that a cleft is a lifelong condition, and that each person’s need is going to fluctuate at different points of his/her life.

Logan and Katie’s Story

My name is Katie. I live in Launceston, Tasmania. My son, Logan was born on the 13th September 2013 with a Bilateral complete Cleft Lip and Bilateral complete cleft palate.

Logan’s Story

  • September 2013: Bilateral complete Cleft Lip and Bilateral complete cleft palate. On medical advice, Logan was fed using a nasal gastric tube.
  • Jan 2014: Logan had his cleft lip repair by Professor Frank Kimble at Royal Hobart Hospital.
  • March 2014: The nasal gastric tube meant Logan did not have much opportunity to use his mouth muscles. Introducing solids was challenging. Swallowing food that wasn’t of the correct thickness caused Logan to cough and choke on food. A speech therapist assisted with food therapy at St Giles, a disability support service in Launceston. Logan accessed this through the public health system using a referral from our maternal and child health nurse stating his congenital condition and being 5th percentile in weight and growth.
  • July 2014 to Dec 2017: Logan switched from food therapy to speech therapy In July 2014, to speech therapy with the same speech therapist to work on development and intelligibility of his speech. This service was discontinued when Logan entered the public primary school system. During this period, Logan also needed support from St Giles consisting of exercises and programs for myself to practise with him at home.
  • July 2014 to Feb 2015: We accessed physiotherapy at St Giles due to Logan not gaining the milestone of crawling. As he underwent surgery, Logan had to wear arm splints which prevented him from being able to bend his arms. The arm splints were necessary to prevent Logan from touching the part of his face which underwent surgery. Unfortunately, this was the time he was beginning to show the early signs of crawling. This missed milestone caused him to lack the stepping stones he required to help develop and enhance his vestibular/balance system, sensory system, cognition, problem solving skills, and coordination.
  • Sept 2014: Logan had his cleft palate repair by Prof Frank Kimble at Royal Hobart Hospital.
  • Sept 2015: Logan had his first grommets inserted due to problems with fluid in his middle ear.
  • Feb 2015 to April 2015: Logan attended Toddler Gym for physiotherapy to assist with crawling, balance and coordination.
  • November 2017: Logan had a second set of grommets inserted to help relieve fluid in his middle ear.
  • Jan 2018: Logan was unable to access the systems in place for therapy due to his part time attendance in kindergarten, which was the Education department’s policy, 3 full days. Logan underwent a speech assessment with the school in September 2018 while attending , Tasmania we changed schools just after this assessment was done to , Tasmania. Being new to the school this also slowed our process into their therapy assistance. We continued to work on therapy at home and when we received Logans Kindergarten Developmental check completed by the school it indicated problems with Logans Fine Motor, Gross Motor, and speech. These problems are still current.
  • Aug 2016: Logan underwent a sleep study at Launceston General Hospital and was diagnosed with severe obstructive sleep apnea. This is known to cause complications in children’s growth, cognitive development, and behaviour. This presented itself after Logans Palate repair in September 2014 however getting enough data for diagnosis was difficult prior to this date after 2 failed attempts.
  • Nov 2016: Tonsillotomy performed by his ENT, Dr Simone Boardman, and with consultation with his plastic surgeon Prof Frank Kimble. This surgery was deferred till after palate repair to maintain as much structure and tissue in the tonsils to allow speech to develop. After this repair Logan underwent a sleep study to review if the surgery had worked to fix his OSA however it showed that he still had mild sleep apnea with mixed/obstructive apnea/hypopnea. CPAP was suggested, however we were advised that this could generate more problems than solutions due to his age and the structure of his face. Logan still has his
  • OSA which is going to be reassessed following his next surgery which is expected to take place in December 2022/January 2023.
  • November 2017: Logan had a second set of grommets inserted as his ability to hear worsens when the grommets fall out of place.
  • Feb 2020: Logan had a third set of grommets inserted as the second set fell out Audiological reviews performed show hearing loss from mild to moderate. He is currently waiting for a new set of grommets, however we are holding off this surgery to align with his next major surgery date if possible.

Logan’s current challenges with hearing continues to impact his education performance. His ability to hear fluctuates so his speech is not optimal – the hearing issues continue to cause clarity and volume issues. I am very concerned about his sleep apnoea issues, which we are monitoring and re- essessing after his next surgery in Dec 2022/Jan 2023. Logan’s progress on speech and intelligibility was severely hampered during COVID, when access to services was difficult.

These are my reflections re NDIS: Lack of handover when coordinators go on leave: I made contact with Baptcare on the 12th November 2018 to follow up the progress of my application as I hadn’t heard anything. I was then told there could be a couple of months wait, due to the coordinator working on my plan being on leave and no handover took place with another coordinator. Our claim was in December 2018, almost 8mths after my initial appointment to start my application. Lack of guidance to families on how to navigate NDIS: It took me a good 3 months to work out what NDIS was and how to access it, and understand what the application process and approval is. This was a difficult and time-consuming process and I felt that I had to navigate this on my own without the guidance and support from anyone.

Lack of empathy with interactions during the COVID-19 pandemic: In February 2022 – 17 days after being granted our plan, the National Access and Reviews Branch at the National Disability Insurance Agency informed me that an eligibility reassessment would be taking place. I raised concerns with the NDIS representative about insufficient time with gathering supporting evidence as our medical team was 203km away from us. The extensions took 3 phone calls and a follow up email over the course of the week of the 28th March – 4th April, as my messages and questions weren’t getting answered. It was a very stressful time for my family and I.

Lack of medical understanding by the assessing staff at NDIA: For the NDIA review re Logan’s eligibility for NDIS, I submitted evidence from his audiologist, speech therapist, plastic surgeon and pediatrician confirming Logan would benefit from the same access to services. Despite this evidence, i received a phonecall on NDIS to tell me that my application needed more supporting evidence. I was also asked to prove that Logan’s bone graft surgery (planned for the end of 2022) wouldn’t fix Logan’s speech issues. When i attempted to explain that the surgery was unrelated to speech, i was asked to provide documentation confirming this. Logan’s speech therapist and plastic surgeon provided the evidence that the bone graft surgery is intended to repair the hole in his gum and stabilize his bone arch and support the base of the nose while giving bone for the teeth to be supported in (not to help his speech).

On the 21st of June 2022, I received an email to explain that Logan was no longer eligible for NDIS funding due to him not meeting the eligibility criteria. This email was followed up by a phone call to confirm I had received the email and explain I could request a review of this decision over the following 3mth period. I was also informed that they would refer me to their Local Area Coordinator, Baptcare, who will support you to link with community and other government supports. I have had no further contact from the NDIS or Baptcare to assist me in accessing these community and government supports. I didn’t request a review at the time as I didn’t have the energy, time, or

  • health to invest between grieving the loss of my stepfather, investigating my own health issues,
  • studying, working and being a mother I also felt like there wouldn’t be a point I had exhausted my resources and support.

How this decision has affected Logan and I

I don’t understand how we meet the criteria for funding and got approved, used our funding, and accessed the services available to us. The specialists involved in Logan’s care have confirmed that we need access to these services and that the time and regularity of these services hasn’t changed, yet we have lost our funding.

I don’t understand how a congenital defect is not deemed as permanent and that he does not meet the disability requirements in Section 24 of the NDIS Act because his impairment is not, or is not likely to be, permanent. His congenital birth defect has impacted his ability to achieve his developmental milestones, and continues to have an impact on Logan’s ability to thrive at school and his community.

Section 24 of the the NDIS Act fails to recognise that cleft care is required for a lifetime, and that the services required will rise and ebb depending on Logan’s growth into adolescence and adulthood. I can’t prove that he will need lifetime support but I also can’t prove he won’t, I don’t know what Logan will need until we need it. I don’t understand how the dots can’t be connected and that the NDIS can’t see how his speech will affect his communication and social interaction and his fine motor skills will affect his learning and self-care. It makes me angry, and sad and it’s frustrating. It’s difficult advocating for your tiny person who needs you to be their voice. I am tired, emotionally and mentally exhausted because the system to me doesn’t make sense. I can’t afford to access the services that Logan needs as per recommendations from his specialist teams. I can only work with Logan as to what I have picked up myself from the sessions I’ve attended with him and hope that I am doing these things right but at the end of the day it won’t be me that ends up losing out from this decision, it’s Logan.

The other question I have is what means, and support will Logan need in the future if he can’t access the therapies he needs now. How will the lack of access to these services now impact Logans future, his education, job prospects, metal health and life? That is where my concern is and that worries me frequently.