Bill Wright is the founder and chairman of the Love Ran Red Foundation, a local non-profit that hopes to fill a void in help for families living with autism.
Bill, what is the Love Ran Red Foundation?
Our main goal is to provide housing for people with Autism and developmental disabilities when mom and dad are no longer able to do so, whether due to old age or health reasons or simply when God calls them home, they’re no longer around. That’s the main function of our organization, to help families in the Lehigh Valley with autism and developmental disabilities.
People don’t realize the tsunami that is headed our way because Autism seems like it’s a phenomena in the last 20 years and it’s reaching tidal wave proportions.
I can tell you that my son, he’ll be 20 in August, he first was diagnosed around three and a half years old, the rate of autism was 1 in 150. There was a new study that was put out by Autism Speaks that puts it at 1 in 64 however the CDC recognizes 1 in 82 so that gives you an idea of the prevalence. And I can tell you that every year there are 50,000 people with autism turning 21 and aging out of programs and that’s basically what our foundation is geared to — what happens when they age out of programs? There are a lot of programs out there for kids with autism, but kids with autism grow up to be adults with autism and that’s what our foundation is focused on.
And the programs end for some reason, but you’re here now faced with your child is 21, your son is about to be 20 in the summer, and so he still has needs and you’re still trying to work, so what happens, how does he become a productive member of society?
Absolutely, right now he’s in the school system until he’s 21 years old. Once he turns 21, it’s pretty much left up to the parents and usually if both parents are working, one of them now has to quit their job. My son will never be able to live independently on his own and somebody needs to be at home when he’s no longer in the school system. There are really no day programs out there.
The biggest burden is the burden mentally. Let’s say the wife or the husband quits work and stays home, that’s one issue. But let’s say you’re 80 and you have someone with autism and there’s the emotional burden of who’s going to take care of my child when I’m gone.
Autism is becoming more and more prevalent. The numbers are growing. The government is going to have a big burden on their hands if it wasn’t for organizations like the Love Ran Red Foundation that are willing to step up and take on some of that burden.
So what you have planned is, you’d like to have a series of homes but your first goal is to get land and build at least one home that would house at least 20 or 30 people with autism?
That was the plan, however in the state of Pennsylvania, there are federal dollars that can help with housing and it’s block granted to the states. And the states distribute the money and the rules that they come up with in terms of housing, they’re shying away from our model, that would benefit my son and others that I talk to. That model is the assisted living model like they have for seniors and people with Alzheimer’s. The state of Pennsylvania looks at that model right now as too much like institutionalizing people. And there’s a big push with the state to have people on the Autism spectrum live independently. They want everyone to be independent. The problem with that is everyone on the spectrum is different. I’m all for people to live as independently as they can, but there are people, like my son and many others I know, who will never be able to live on their own. You put them in a situation where there’s a stove and they can get at it, something bad is going to happen and I can tell you that as a parent for 19 years of an autistic son.
They can’t stop you from building the house though, right?
We can continue building the model that we want, however we would have to stay private. We wouldn’t be eligible for any of that money for the cost of staffing the place.
Are you leaning toward trying to take the federal dollars?
Here’s the catch. If we don’t take the money, it’s probably going to be between $3000-5000 a month for someone to live at our facility. Because now we have to incur 100% of the cost of staffing it. There’s a big push for group homes, where we can go into a community and buy individual housing, and put up to three people in a house and staff it. We would be eligible for the money in helping with the cost factor. The state of Pennsylvania is pushing for a program, I call it foster care, they want to put people with autism in basically foster care.
Are you open to that?
I’m not. I don’t think my son would flourish in that. It’s not a permanent solution, people that are involved with foster care, if they decide they don’t want to do it anymore, then they’ll be bouncing around to different homes.
So you’d like to get this home done whether it’s with funds from the state or private, you’re still trying to get this house done, right?
And you have some fundraisers coming up?
Our biggest fundraiser of the year is our golf tournament that’s held at Lehigh Country Club. We had our inaugural tournament last year and our second tournament is on Monday, June 11 at Lehigh Country Club. We have other fundraisers throughout the year, a beef, beer and wine in November. We have all of our events on our website. If you just want to donate to the cause, we are a 5013(c) so donations are tax-deductible. Your dollars stay here, they’re going to be helping people here in the Lehigh Valley. You can also volunteer at any of our events, we always need people to help.
You can find out more about the organization at loveranred.org or by calling 610-965-1208.