NDIS Support Letter

"I am pleased to be Leo Vance's paediatrician and have known them since the date given below. At their request, I am writing to outline the challenges they experience and my recommendations for how they could be better supported." Leo Vance 14/03/2021

Nature of Disability

Spastic diplegic cerebral palsy and Autism Spectrum Disorder (ASD) Level 2.

• Both conditions are permanent, lifelong neurodevelopmental disorders.
  • Spastic diplegia is moderate in severity, predominantly affecting the bilateral lower limbs.
  • ASD requires substantial support for social communication and restricted, repetitive behaviours.

Functional Impacts

• Gross motor impairment and lower limb spasticity.
  • Reduced gait efficiency, poor balance, and frequent tripping.
• Receptive and expressive language delay.
• Fine motor dyspraxia.
• Sensory processing difficulties and emotional dysregulation. Gross Motor Function Classification System (GMFCS) Level II explicitly connected to gross motor and mobility impairment. Clinical Evaluation of Language Fundamentals (CELF-5) Core Language Score of 68 (1st percentile) explicitly connected to communication impairment. Vineland Adaptive Behavior Scales (Vineland-3) Adaptive Behavior Composite score of 65 explicitly connected to self-care and daily living impairments.
• Mobility:
  • Ambulates independently indoors using bilateral ankle-foot orthoses (AFOs) but requires a K-walker or manual wheelchair for community distances (> 100 m).
  • Unable to negotiate stairs without a handrail and close adult supervision.
• Self-care:
  • Fully dependent on carers for lower body dressing, fastening buttons, and tying shoelaces due to fine motor dyspraxia and impaired balance.
  • Requires physical assistance for transfers in and out of the bath and supervision with toileting hygiene.
• Communication:
  • Struggles to follow multi-step instructions and express complex needs, resulting in frustration.
• Social interaction:
  • Difficulty interpreting non-verbal cues and initiating peer play. Functional capacity fluctuates daily. Physical fatigue significantly worsens in the afternoon, leading to increased lower limb scissoring, frequent falls after 14:00, and inability to walk from the school gate to the car. Sensory overload in noisy environments (e.g., supermarkets, school assemblies) triggers acute meltdowns 3 to 4 times per week, rendering him unable to participate in scheduled activities for several hours afterward. Targeted early intervention, including fortnightly physiotherapy, occupational therapy, and speech pathology, is expected to improve functional independence and prevent secondary musculoskeletal contractures, though the underlying conditions will not resolve.

Social Impact

Significant social isolation, difficulty forming peer relationships, and restricted access to mainstream recreational activities. Pediatric Quality of Life Inventory (PedsQL) Total Scale Score of 48.5 associated with reduced social integration and emotional wellbeing. Social Responsiveness Scale (SRS-2) T-score of 78 associated with severe social withdrawal and peer interaction deficits.

• Unable to participate in unstructured playground games due to mobility limitations and inability to keep pace with peers.
• Avoids group settings and birthday parties due to severe auditory sensory sensitivity.
• Experiences high levels of anxiety and emotional distress when daily routines are altered without prior visual warnings.

Economic Impact

• Primary caregiver (mother) has reduced employment from full-time to 0.4 FTE to attend multiple weekly therapy appointments and manage school pick-ups during episodes of fatigue or behavioural dysregulation.
• High ongoing out-of-pocket expenses for specialised footwear to accommodate AFOs, continence aids, and sensory regulation equipment.
• Need for vehicle modifications (swivel seat or hoist) as Leo grows heavier and manual lifting becomes unsafe for carers. Provision of adequate NDIS-funded support worker hours (for after-school care and therapy transport) and assistive technology will directly mitigate the economic impact on the family by allowing the mother to maintain her current employment hours, though ongoing equipment costs will persist as he grows. Economic impact increases acutely during school holidays and periods of post-intervention recovery (e.g., for 2 weeks following lower limb botulinum toxin injections), requiring carers to take unpaid leave to provide full-time physical care. No assessment available

Previous Treatments And Outcomes

• Botulinum toxin type A (Botox®) 200 units IM to bilateral gastrocnemius and hamstring muscles (administered every 6 months) combined with serial casting: resulted in temporary reduction in calf spasticity and improved heel strike for 3 to 4 months post-injection.
• Bilateral hinged ankle-foot orthoses (AFOs): improved standing stability and reduced tripping frequency.
• Weekly Speech Pathology (for the past 18 months): successfully introduced a Key Word Sign and high-tech Augmentative and Alternative Communication (AAC) device, reducing communication-related frustration.
• Melatonin 2 mg PO nocte: improved sleep onset latency from 2 hours to 30 minutes.

Suggestions For Ongoing Or Future Supports

• Ongoing Occupational Therapy (fortnightly) to focus on upper limb fine motor skills, self-care independence (dressing/toileting), and sensory integration strategies.
• Ongoing Physiotherapy (fortnightly) and hydrotherapy (weekly) to maintain lower limb range of motion, strengthen core musculature, and optimise gait post-Botox® injections.
• Ongoing Speech Pathology (fortnightly) to expand AAC vocabulary and pragmatic social skills.
• Assistive Technology funding for an annual upgrade of bilateral AFOs, a lightweight paediatric manual wheelchair for community access, and a bath transfer bench.
• Support Worker funding (10 hours per week) to assist with afternoon self-care routines and facilitate safe community participation. Leo and his parents demonstrate remarkable resilience and dedication, consistently engaging with a demanding schedule of multidisciplinary therapies to maximise his developmental potential.