The Stuckeys need SUPPORT

Below, is an excerpt from Steph:

Richards business crashed during covid, reducing his revenue to below 20% of what it was pre-covid. I am working full time night duty most weeks, across three employers to cover bills. Richard cannot hope to rebuild his business, due to caring for some of our behaviourally high needs children combined with young children requiring care.

We cannot access NDIS for majority of these without significant cost of assessments- until then therapies and other supports for those children are privately funded. Assessments required to access NDIS at $3000 per child, requiring speech therapists, psychologist and OT, while we are already under paediatricians for three, waitlisted for a fourth. Assessments are not covered by any mental health plan/Medicare, public assessments are waitlisted 1-2 years, university based assessments at reduced fee waitlisted 8-12 months or closed to new referrals. Our NDIS recipient is deemed too ‘high functioning’ to receive any core funding for access to any in home help or assistance in making his therapy ‘homework’ viable- however NDIS does not factor in the loss of time and attention owed to our other children or the general difficulty in running a household, when you are spending most days running from therapy to specialist.

We were also rejected by NDIS, for our highly intelligent, but struggling neurodivergent child, due to the arbitrary age cut-off of early intervention. Medications have helped somewhat, but a lifetime of stimulants and Prozac from the age of 6, is not any sort of ideal we are wanting to continue. Case studies and trials into an off-label therapy provide hope of improving her (and our) quality of life significantly. In the meantime we are commencing privately funded OT and psychology to build self regulation and coping skills- in order to keep her in the classroom as long as possible.

In conjunction with conventional therapies, we are already undergoing off label therapy here in Melbourne, supported by groundbreaking studies and success in the US, at $6000/treatment, requiring at least two treatments for our second youngest. We are hoping to treat three of our children- which would greatly improve their learning, neurodevelopment and quality of life. Already, our boy undergoing treatment has been documented by his speech therapist having an acceleration in speech development since treatment commenced (14 sessions in). He is also for the first time, constructing three and four word sentences, his focus and attention improving and fine motor interest and ability noticeably improved. One of our paediatricians is following progress closely and is eager to see and document any positive outcomes, that might bring hope to families far beyond ours.

With this, comes significant strain on family and finances with not just the immediate cost of treatment, but the extensive time and travel involvement, loss of work hours and daily mileage from outer South East suburbs to South Yarra. We have so far burnt through our small savings covering this- and we are not done.

Another child is requiring sleep studies and invasive ENT surgery access prohibitive due to an overloaded public health system. In the meantime, she is having chronic sleep apnoea, resulting in poor oxygen, fatigue etc. Our boy is also predicted to require repeat surgery to correct an ongoing hearing impairment, which the last surgery has improved but not resolved. We need to undergo medically-indicated orthodontic/maxillary treatments on our eldest to correct ongoing sleep and obstructive airway issues. Our third needs extensive preventative treatment to avoid facing the same and more extensive intervention down the track which would exceed $12000 in maxillofacial surgery if we don’t work to correct now at about half that cost. All second opinions that we have sought, confirm the treatment needs.

We are currently under the care of:

Urologist

Behavioural Paediatrician

Developmental paediatrician

ENT

Occupational therapist

Speech therapist

Psychologist

Orthotropic orthodontist

Oral/Maxillofacial surgeon.

Specialising general practitioner.

Waitlisted for gastroenterology and respiratory- as well as another two waitlisted for psychology and OT.

Raising a large family was always going to be expensive, but we just didn’t anticipate the avalanche of medical and related costs that have arrived over the last two years. Our expected medical costs this year are exceeding $25k- without off label therapy, which would push this out to close to $50k.

We’re putting everything we have into this. Above holidays, above extra curricular’s and even above purchasing a house, because it’s worth so much more.

Not for us, but for our children.