Families with members who have developmental disabilities are making their case for more help to a legislative committee in Thunder Bay this week. 

Marilyn Leiterman is one of several people making presentations to the Select Committee on Developmental Services during its hearings in Thunder Bay.

“I'm going into the school and saying here's this invisible disability. Help my child,” she said, as she described one of the barriers in obtaining support for children with fetal alcohol spectrum disorder.

Marilyn Leiterman

Marilyn Leiterman makes her presentation on the challenges raising children with Fetal Alcohol Spectrum Disorder. (Nicole Ireland/CBC)

Leiterman is a foster parent for children with Fetal Alcohol Spectrum Disorder and is also a FASD educator.

Committee chair and Toronto MPP Laura Albanese said the system needs an overhaul.

"We hear from families that are in despair,” she said. “[They] are not able to sleep at night because they are exhausted taking care of their children and they can't access enough supports."

‘Huge void’

Albanese said parents also worry about what will happen when their children grow up.  

“A lot of parents are telling us that, when their child turns 18, they find they fall into a huge void,” she said.

“All of a sudden they're not eligible for the services and the programs that they used to benefit from and they don't know where to turn."

Laura Albanese

Chair of the Select Commitee on Developmental Services, MPP Laura Albanese, listens during a hearing Thunder Bay on Tuesday. The hearings were to continue on Wednesday. (Nicole Ireland/CBC)

Albanese said the committee continues to “hear from families, organizations and experts in the sector [that] there is an urgent need for a comprehensive strategy ... to look at the services and the programs there are available for youth, for children, for adults, for seniors [who] have ... developmental disabilities."

She noted there's a need for the ministries to talk to each other about what services are available.

“There's not one solution that fits all,” Albanese said. “Therefore people have to be able to make the choice that is right for them, for their situation, but we're not there yet."

Ministries need to work together

While the Ministry of Community and Social Services is responsible for many of the programs that are offered, to meet the many needs and challenges facing people with developmental disabilities and their families in so many facets of their lives, many other ministries need to play a role too, Albanese said. Those ministries include the ministries for Children and Youth, Education, Health, Housing, Corrections, as well as the Attorney General.

The committee is holding sessions across Ontario and accepting written submissions from people affected by developmental disabilities. Sessions are being held in London, Thunder Bay, Moosonee, Ottawa, and Toronto.

'I feel like they do want to make some change.' - Marilyn Leiterman, foster parent for children with Fetal Alcohol Spectrum Disorder.

Some people will be presenting by teleconference, as was the case for Sioux Lookout First Nations Health Authority, which called in on Tuesday.

Leiterman said she feels optimistic after presenting to the committee on Thursday.

"I feel like they were listening. I feel like they do want to make some change,” she said.

"I've been wanting to speak to [provincial] officials ... for a very long time, but getting through the door can be difficult at times. So this was a fantastic opportunity.  I needed to voice my concerns [about] what isn't happening for the support of Fetal Alcohol Spectrum Disorder."

Albanese said the committee has a huge task ahead of them, but she hopes the committee's recommendations — expected in May — will be a start.