There is such an amazing lack of information or disconnect in the general public regarding vision issues and education. I am always amazed, but I guess I shouldn’t be. I find myself educating. Most of the time it is lack of understanding, rather than malice that drives the misunderstanding.
It has been a rather interesting beginning to our new homeschool year. For the first time in 3 years (we are beginning our 4th homeschool year with our visually impaired son), we took a month off in the summer with no services. I took 2 and 1/2 months off from teaching. The break was so needed by me.
We are very fortunate to have the providers we have. Even though they have not worked with a blind child before, they are more than willing to learn. We share information and articles along with suggestions. Because we are not bound by an IEP, we can adjust as the situation warrants easily and timely, usually.
The TVI and I decided last year we needed some input regarding Vinnie’s expressive language issues. We have a great speech therapist, but she didn’t have any suggestions. The TVI suggested another speech therapist who has some expertise working with children who are visually impaired with atypically developing speech. The TVI related she’d had good success with this therapist. But there was a glitch. She doesn’t accept Maine Care (Maine’s version of Medicaid.) Okay, so where do I find funding?
I read a lot of newsletters and other publications that come my way to keep up on what’s new and interesting related to my children’s needs. So I read in a Maine newsletter about some funding available when insurances doesn’t cover, to provide for an unmet need. Well, I was sure that this was the case with our need to consult a specialist.
Of course, I went right to work and obtained an application. I asked if I needed a case manager, because the application had to be signed by a case manager. I was assured that I could sign the application. I was told to send a cover letter outlining my request and an Individual Education Plan (IEP) and/or Individual Family Service Plan (IFSP), with reference related to the need. Since we homeschool, the person getting the application related that the IFSP for section 28 (a program to provide a 1:1 for children with developmental/behavioral needs) services would do. That, it turned out, was the easy part.
Then there were questions about the IFSP for section 28. Where was the Axis I and Axis II diagnosis? I was told my son wasn’t entitled to the section 28 services. My head hurt at this point and you can guess my frustration was pretty high. Finally, the application person went to the director of the section 28 program and it was explained. Again, the “disconnect” and lack of knowledge about visual impairment and blindness issues.
The request for funding was followed by a series of phone calls asking for more information regarding why I need this specialized service for my son. I answered and followed up with the additional information. The person I was working with had no knowledge about services for a child who was visually impaired, evaluations, nor was there a clear understanding regarding special education regulations. Finally, I asked for a written list of information in writing regarding what was lacking in my application. At this point I was told that if I had a case manager (I worked for 7 years as a case manager, but things do change), that person would know about these things I was asking. Anyway, after again following up I believed we (because by this time, my TVI had also written a supporting letter as well as the speech consultant with specifics about what, how, when, where, and how much the service would cost) had submitted everything. We were led to believe that the funding would be approved. That was August and September. The “disconnect” in understanding the needs and what was really required continued.
At the end of September, the request was denied because the IFSP had expired 3 days before. I could have gone back and gotten it renewed, but it is coming into flu season and the boys can’t go to the program because of communicable stuff and it started early this year. We have a doctor’s letter so the section 28 spot stay open. I decided not to go through all the hassle, because I was sure there would be yet another request. We were not communicating well at all and continued with our “disconnect.” Actually when all was finished, I got an email saying I was “not collaborative.” I’m thinking she meant I wasn’t very cooperative and there is no appeal process. “HUH!”
I did follow up and request a sample of what would be acceptable with regard to an IEP or IFSP. I was told that the service would have to be written into the plan, stating the need. Our group talked. There is no way that anyone is going to put something like that in an IEP or IFSP because they then become responsible. Again that “disconnect.”
So we’ve all learned something as well as a new term, “Not Collaborative.” Yes, I’m smiling. It makes a good story. It also reminds me again, why we homeschool.
“And now for the rest of the story,” as Paul Harvey used to say. I went back to the state of adoption and asked if they could help. I talked with a really nice lady who also had twins who were premature. She said if I sent her the material, she’d run it by the review committee that week. I put my husband to work scanning and off it went. I got an email 2 days later with my funding request approved. If we find this helpful and need additional services, we can reapply. A happy ending after the “disconnect” and my “lack of collaboration.” Best of, all Vinnie is going to get the service/consult we need to move forward.