Queensland Family Seeks Specialized Seizure Alert Dog for Son with Rare Epilepsy

A Queensland family is raising funds for a specialized seizure alert dog for their four-year-old son, Leo, who has a rare and medication-resistant form of epilepsy. The National Disability Insurance Scheme (NDIS) does not fund such dogs, as it primarily considers epilepsy a medical condition. The family's efforts coincide with a Senate inquiry into epilepsy support in Australia.

The Family's Situation

Kat Robinson's son, Leo, was diagnosed with Dravet syndrome at the age of one. The condition involves significant safety concerns, including the risk of nocturnal seizures.

The family currently uses anti-suffocation pillows and video monitors for Leo's safety. Robinson has stated that while these measures are in place, they do not provide an alert if a seizure occurs during sleep.

The Seizure Alert Dog

The family has been matched with a dog-in-training named Annie through the organization Helpful Hounds. The dog is intended to monitor Leo and alert the family to seizures.

The initial cost for a trained seizure alert dog exceeds $40,000.
This is followed by ongoing expenses for the dog's care and maintenance.
Training for such specialized dogs can take up to two years, leading to waiting lists.
The family hopes Annie will be ready to join their household by the end of the year.

To cover the costs, the Robinson family has turned to online fundraising and other means, including game show appearances.

NDIS Funding and Policy

The National Disability Insurance Scheme (NDIS) is not funding the seizure alert dog for Leo.

A National Disability Insurance Agency (NDIA) spokesperson stated that to access the scheme, "a person needs to have a disability that has a significant impact on their functional capacity," and that all decisions are made in line with the NDIS Act.
The NDIS classifies epilepsy primarily as a medical condition rather than a disability, with support expected to be accessed through the health system.
The NDIS can fund assistance animals in limited circumstances, but seizure alert dogs are not covered.
Leo Robinson receives some NDIS funding for fortnightly speech and occupational therapy appointments.
The family's application for NDIS funding for a support worker was not approved.

"The health system doesn't provide the level of support that they need. They have nowhere else to turn."

Broader Context on Epilepsy Support

Sandi Rodiger, chief executive of Epilepsy Queensland, provided context on the challenges faced by many families.

Rodiger stated that "probably the vast majority of our phone calls are around how to access the NDIS because people don't have access to support."
Rodiger added that for individuals dealing with significant safety concerns, "the health system doesn't provide the level of support that they need. They have nowhere else to turn."

Senate Inquiry into Epilepsy

A Senate inquiry into epilepsy in Australia was announced last month.

The inquiry is currently accepting submissions, with a deadline of mid-May.
A final report from the inquiry is due in September.
Epilepsy Australia has stated it hopes the inquiry will highlight funding gaps and lead to improved support systems for people with epilepsy.

"I think it's a recognition that more needs to be done. We need to change the way that we view epilepsy in Australia so that the support is there for people."

This inquiry proceeds as the federal government works to manage the costs of the NDIS.