Carolyn Simmons of Lockport loves her daughter Carrie.
Carrie is 39 years old now, she's severely disabled both mentally and physically.
"Carrie is a wonderful daughter, she's cooperative and she's warm and loving, but she still needs someone with her, I just can't go out. I'm here, her and I are here tonight," says Carolyn.
Carrie goes to a daycare program during the week, she gets home at 3:30 p.m. and from there Carolyn, a single mom, cares for Carrie basically by herself.
Carolyn is 66 years old and has arthritis. She doesn't know how much longer she'll be physically able to take care of Carrie.
"I'm concerned that there will be a fall as i'm transferring her in her wheelchair from one place to another. But my biggest concern is what if something happens to me- if i don't wake up tomorrow morning, where is Carrie going to go? That's my biggest concern," says Carolyn.
Carolyn would love to have Carrie placed in a group home in Niagara County, where Carrie would be safe and well cared for, but there's currently a severe shortage of group home spaces in Western New York and all across the state.
To make matters worse, the state doesn't even have a handle on how many families are in need.
Dory and John Matwijkow of Grand Island are also looking to find a group home for their son Austin, who's autistic. They applied for a spot more than a year ago.
Austin goes to school during the day, but much like Carolyn Simmons, Dory and John, who both work, are full time care givers for Austin when he's not in school.
"My greatest fear is that as we are getting older, that if something happens to one of us, what are we going to do? If one of us is going to die, or get hurt, which can certainly happen, there's no program in place for an emergency. That's what scares me the most," says Dory.
Over the past 18 months or so, the couple's worries have only increased because Austin at times has become violent. Something as simple as a car horn, or even certain words can set him off.
"Yesterday, he attacked Dory a little bit. Me being outside and hearing Dory scream because he was attacking her...then you get a hug," says John.
"It's very difficult and we love the kid to death, he's a great kid," adds Dory.
We asked Dory if she's ever feared for her life? " I have. I have learned to always be on my guard," she says.
It's estimated that in Western New York alone, there are one thousand families on a state registry, waiting for their adult children to be placed in a group home.
Last year the state says it moved just 134 developmentally disabled adults into group homes in our area.
One major factor contributing to the problem the families say, is that the state has had a moratorium on building new group homes since 2008.
The state Office for People With Developmental Disabilities is in charge of group homes. They declined our requests for an interview.
Niagara county State Senator Rob Ortt heads the Senate's Committee on Developmental Disabilities.
In this year's budget, the legislature allocated one million dollars for the state to reach out to parents on the group home waiting list and update it, as well as to identify new group home spaces.
But the legislature won't receive the results of that report until next February, and it's not known when that moratorium on building new group homes will be lifted.
We asked Ortt is he believes the state has dropped the ball on this issue.
"I can tell you there are a great many folks who truly do care about this community. Is there more to do, can the state do more, should the state do more? Without question. Do we need to do more? Yes. For me,it's not enough to say 'we hear you,' we need to do something about it," says Ortt.
In the meantime, one thousand families here in Western New York will continue to wait...and worry.
"We constantly worry about the future, because what are we going to do? We have no idea, it can be years," says Dory.
