Helping special needs families navigate the system

June 2016
by Wendy Schneider

When Rina Rodak transferred her eldest son Zane from Jewish day school to public school, she was shocked to learn that he didn’t qualify for special education services. How could she have known that her decision to send him to private school years before his autism diagnosis would exclude him from receiving immediate school board-funded support service? Despite her background in education, the transition was more complicated than could ever have been anticipated.  

With her years of experience as a teacher with the Toronto District School Board and as an academic and vocational counsellor, Milena Romalis would often advise parents whose children faced academic and vocational challenges. But when her son Zev was diagnosed with autism at the age of three, she felt as helpless as her clients.    

“I told myself; I’m educated, I’m resourceful, I know the education system, I know the therapeutic system.  I have done this professionally, and I’m still absolutely overwhelmed.  I can’t get my hands on the supports I need,” Romalis said.  

Between the two of them, Rodak and Romalis have 23 years of collective experience in facing the myriad challenges inherent in raising a special needs child. They are now channelling their personal and professional experience into a consulting business they’ve called NowWhatConsulting.

“We thought that between us we had a whole gamut of experiences that could spare other families a lot of frustration, time and money. We can help families who think that if they don’t qualify for a particular government service, they can’t get the help they need anywhere. Here we are….we can help you,” said Rodak.  

While the two have unofficially been helpful to parents facing similar challenges over the years — “there wasn’t a week that went by where I didn’t have a phone call or an email from somebody whose child had been recently diagnosed who had been networked to me,” said Romalis — by formalizing their relationship, the two women offer the wisdom of their experience on a much larger scale, while providing an essential service.

“Here in Ontario we have a very disjointed system,” said Romalis. “Your child is diagnosed by a physician and then you’re on your own. You are left to clarify whether your child falls into an age group that is covered by OHIP therapies or under school board funding. You need to determine what public and private resources are available and how to access them, to find the subsidies and maximize your tax credits.” 

“The doctor, the psychologist, the behavioural pediatrician... the schools are all dealing with different areas,” said Rodak, “but there’s no one who bridges it all, who brings all those people to the table. And if you don’t have all of them working together, then you’re not working.”

The missing case management piece is the essential service that Romalis and Rodak will provide their clients. During intake sessions, said Romalis, “we’ll be looking at academic and therapeutic supports, what private and public models have been in play ... basically getting a sense of what the family’s needs and goals are, what their biggest challenges are. Then we’ll go off and do a whole bunch of research, pull together resources and come back with a plan.”

Raising a special needs child in Ontario is expensive. Even when government-funded treatment options are available, parents typically pay out of pocket for therapeutic services. It’s for this reason that Rodak and Romalis have kept their fee affordable, even providing pro bono services for families in dire need. “That is a key piece for us,” said Rodak. 

It’s important to the two women that people know that it’s not only families with special needs children who stand to benefit from their services.

“There are many higher functioning kids who fail to thrive in school,” said Romalis, “and we work with families who have any kind of challenge with their young or adult child, who find themselves mired in the system.”

Both Rodak and Romalis are pleased to see how Jewish community institutions are increasingly becoming more sensitive to special needs families. Federation’s recent decision to allot funds to help families access psycho-educational testing is another significant step towards removing the stigma from special needs families and creating a sense of inclusion.


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