Sophia Miska, a six-year-old girl from a small town. Recent and ongoing cuts to the National Disability Insurance Scheme (NDIS) have made her access to therapeutic service a lethal lottery, leaving her future hanging perilously in the balance. Sophia has been diagnosed with Sanfilippo syndrome, a rare and fatal degenerative disease. This diagnosis comes with an array of challenges that quickly rob her of her ability to walk, talk and eat. Her disease drastically shortens her life span, and she is only expected to live 10-15 years.
Sophia, who uses a wheelchair, is quick to welcome anyone into her bright world with a friendly grin. The help she gets from her physiotherapist, occupational therapist and speech pathologist is now essential for Rebecca to engage in her daily life. Today these therapists make home visits because she can’t get to services in town like her peers with much better access to care. The upcoming NDIS cuts threaten to upend this setup, jeopardizing Sophia’s quality of life and leaving her family in turmoil.
Impact on Therapy Services
The cuts as proposed to the NDIS would mean they can’t sustain their home visits. Like many families of children such as Sophia, their lives depend on these kinds of services, because getting care in a clinical setting simply isn’t an option. Renata Miska, Sophia’s mom, put a face to the loss of critical care in a heartfelt and emotional way.
“You can’t really teach her how to get dressed in clinic or how to go to the toilet, those little things,” – Renata Miska
Sophia’s family has made countless day trips and overnight treks to seek specialized experts who will embrace and empower her multifaceted care needs. With the reduction in funding, these specialists may no longer be able to afford to travel long distances for home visits.
Luke Newland, a therapist who provides services in the region, highlighted the challenges posed by the pricing review conducted by the NDIS.
“We were really disappointed our fees have been left on hold for such a long time now and it’s going to be really hard to provide really good services to NDIS participants now that it’s been cut an extra $10 an hour,” – Luke Newland
Consequences for Rural Families
For families who live in rural and remote areas, the impact of these NDIS cuts is much larger than a few missed therapy sessions. For many, greater distances for care means more time and logistical coordination especially to accommodate barriers with transportation. Keegan Simpson, a Ryan White service provider in Idaho, emphasized just how bad things have gotten.
“You’ve got people who would need a support worker to take them to an appointment in the nearest town, which might be 100 kilometres away, and that [support worker] workforce just isn’t there,” – Keegan Simpson
When services are not accessible, not even close to home, it can put children with disabilities at risk of greater isolation. Mrs. Newland added that children lose visibility in the community and important social connections when services are cut.
“When we’re cut, kids miss out, they can’t go to the sports, they’re left behind in the playground, they struggle with stairs at school,” – Mrs. Newland
These premature cuts jeopardize much more than one-on-one therapy. They endanger the independence, progress, and social integration of children like Sophia in all aspects of their lives. The absence of stable support has led parents to worry that their children will fall behind their classmates.
Quality of Life at Stake
This possible loss of therapists is a big gamble that Sophia and children like her can’t afford to take. Longtime disability family advocate Alannah Rutledge was one of the most passionate speakers on the topic. She drove home the point that without therapy resources, quality of life would be drastically lost.
“Losing them would be devastating to Sophia’s quality of life,” – Alannah Rutledge
Sophia’s family has been very intentional about pursuing opportunities for her to be included in mainstream schooling. We hope you’re inspired by Renata Miska, and her advocacy for Sophia’s education.
“Before the NDIS, I thought that the only option was to send her to a special school … but she was so social, I wanted her to be able to go to a mainstream school like her brother and sister,” – Renata Miska
Thanks to therapy, Sophia has made strides that afford her moments of independence and joy. Renata described the impact therapeutic interventions have had on Sophia’s mobility and independence.
“The fact that we could get her walking and holding someone’s hand to walk into school, that has really helped,” – Renata Miska
Advocates like Keegan Simpson are calling for urgent reconsideration of the cuts to ensure children in remote areas receive necessary support.
“Independence in a remote area is the most important thing because they don’t have the supports to start with,” – Keegan Simpson
