An estimated two thirds of all young people with mental health problems are not getting the help they need according to the Department of Health and Human Services. It makes it all the more important that parents are involved in advocating for their children.

For Sue Mustard advocating for families who have children with developmental disabilities and mental health issues is personal.

"I have a 22 year old son who has Asperger’s syndrome which is on the autism spectrum,” said Mustard.

Sue is the director of family involvement for Hillside Family of Agencies, a position she never imagined she'd be in. A hairdresser by trade, Sue's own experience brought her to where she is today. Her son, Henry, was in the third grade when he was diagnosed with Asperger’s.

"People really didn't know about Asperger’s or how to include kid's with Asperger’s syndrome and other behavioral issues into regular classrooms so a lot of my work went into advocating for the best educational placements for him,” said Mustard.

It wasn't always easy for Sue either wanting the best for her son, but dealing with the stigma attached to his disability.

"Sometimes it was embarrassing I didn't want to show my face when everybody knew that we had this situation, but I just plugged ahead and said this is our school also so I really tried to get involved in as many typical experiences as well as special experiences,” said Mustard.

Sue runs Hillside's Parents are Partners program.

"It's really important for parents to connect with other parents because even if your child is different they are different in the same way that a lot of other kids are different and a lot of times parents feel very alone and they need to realize that there are other families that have similar issues,” said Mustard.

"You’re not alone, you're not alone, anything you've gone though you are definitely not the only one,” said Jena Smith, who is a parent advocate and member of the Parents are Partners program. Jena uses her own experiences with her son Wesley to help others.

"Early on when he was about a year old we knew that he wasn't speaking as well as he should be at home. We knew what he wanted, but if he got outside the home the grunts didn't mean anything to anybody else,” said Smith.

Parents are Partners encourages moms and dads to be involved whether it's attending their child's treatment or going to Albany to talk with lawmakers. One of the biggest challenges is accessing the services that can best help children.

"It's just kind of a give and take with the service, if he does better in school they want to cut the services then they cut the services and he does bad again. So we’ve got to fight to get them back so one of my fights is just to keep the services” said Smith.

“It’s when they don't fit the criteria of any of the systems and they fall through the cracks and that's my own personal struggle with my son also,” said Mustard.

“We like to label people and kids are not labels most of the kids that we deal with are great kids. They are individuals that have lots of strengths and we try to categorize them based on their needs and that's really not fair.”

It’s an ongoing struggle to shed light on the vital role parents play in advocating for their children.