Autism and School Choice

 Something we knew early on and finally confirmed: Robin is autistic. 

This is no surprise at all and, mentally, I understand this. I have resources. I've done research. It's thoroughly probable that I'm autistic as well, based on my research. Robin's two cousins are autistic and we know there is a genetic component.  

Emotionally, I'm confused. I want what's best for Robin. I want them to succeed in life. They're not "autistic enough" to need a specialized classroom. But they are autistic and will need supports to succeed. 

We looked at a private school that we really liked. We thought Robin would do very well there. The school thought otherwise and we did not get in. We had put all our eggs in this one basket and now we're trying to find another solution. Public school is not an option for us. None of us think that Robin would do well in public school. 

I'm just... confused and sad at this point. Obviously, I want my child to be happy and healthy. I don't want them to go to a school that doesn't see the amazing person they are. But I also thought that we had found a place that would see the potential. I'm sad that there are people out there who don't see Robin's amazing potential. Robin is so smart, especially when it comes to mechanical and kinaesthetic learning. 

I feel like I'm to blame. Clearly, genetics is at play. I also know that I was resistant to preschool/daycare because we didn't need it. Robin goes to a half-day, twice a week program currently and is doing very well interacting with the other kids who attend. Robin isn't even the only autistic kid who attends. I just wonder if there is something else I should have done to prepare Robin for school, but then again, they're not even four yet. 

Early Intervention Services

 It's been a while. 

My kiddo has an expressive speech delay. They understand most things we tell them. They follow directions when they want to. But, we're in speech therapy and have been for about a year now. We do virtual therapy, since we started during COVID and it works for our family. 

Since Robin (kiddo) turned 3, we had to switch over our Early Intervention company from Childlink to Elwyn. Elwyn is the only option for age 3 until school age. Elwyn has a lot of hoops to jump through. 

Listen, they're understaffed. I get it. Everyone in any sort of public-facing job is short-staffed. However, this does not mean that small children should go without required services. 

We got our IEP. We qualify for speech therapy. 

We waited a month from Robin's 3rd birthday. No therapist lined up. We've gone 4 weeks now without our speech therapy sessions. I'm unhappy with this wait. 

I messaged our service coordinator. I told them that I know that if they cannot find us a therapist, that Elwyn must reimburse us the cost of a private therapist. I'm told: 

Elwyn is offering reimbursement for families who are able to provide a private therapist. You would need to submit an invoice to Elwyn who would then reimburse you every month for the sessions – note that you would need to pay the therapist yourself first and we reimburse the family. They can be flexible if you aren’t able to make a whole month of payments due to income, but that’s where they would start. Once Elwyn is able to assign our own provider, we would stop reimbursement and have our therapist fulfill the service as usual.

The day after I get information about the reimbursement, I'm told that Elwyn found us a virtual speech therapist and we'd get started. Awesome, we get started. 

About two months after we get started, I message our service coordinator again. I want to ask about our missed sessions from when we went 4 weeks without speech therapy. I'm told: 

This would be considered a Compensatory Education Plan. We would typically measure how much session time was missed and if Robin had regressed, remained stable, or made progress during that time. Then we’d use that information to determine how best to deliver any time that is owed.

Ok, great. They tell me we get 4 sessions and I let our therapist know and we're working on making up those sessions. Things are working out nicely for us. Robin is making progress. We love our speech therapist. She's wonderful! 

However...

I'm in some parent groups for kids with disabilities and I hear a lot that parents are waiting a year or longer for Elwyn to get them a therapist. I know we're lucky and we can do virtual therapy, but a year to a kid who needs therapy is a long time, especially for a kid who is only 3 or 4 years old. This is key development time. (https://www.choc.org/primary-care/ages-stages/3-years/) 

So I comment where I can and let parents know that Elwyn must reimburse. I know that there are probably many families out there who can't afford to pay a therapist in advance. I know that the City of Philadelphia is a poor city. In fact: 

About 400,000 residents—including roughly 37 percent of the city's children under the age of 18—live below the federal poverty line, which is $19,337 in annual income for an adult living with two children. And nearly half of all poor residents are in deep poverty, defined as 50 percent below the federal poverty line. (https://www.pewtrusts.org/-/media/assets/2017/11/pri_philadelphias_poor.pdf) 

 Also, how is Elwyn going to do Compensatory Education Plans when they wait a year for a service? A 2 year old "remaining stable" until they are 3 years old is not OK. They should be progressing. How do they figure that out? 

I sincerely hope that parents have good advocates who can help them out in this system. It's hard to raise a kid, and it's even harder when they need early intervention services.