magnifying glass

Today I want to write about how much I appreciate my little community of Berkeley Special-Needs Parents (called BSPED on the emails). There will be a bit about Dar’s vision, but that isn’t my, ahem, focus.

Recently, we received a letter from the District Nurse that read “This is to notify you that your child’s vision was tested at school. Your child was not able to be tested because of inconsistent responses.” This was alarming for two reasons, neither of which had anything to do with Dar’s inability to respond – he’s non-verbal, what would you expect?! One reason is that the people educating my child need help with grammar. The other reason related to the rest of the letter:

“It is in the best interest of your child to follow up with your primary physician or an eye care specialist. We would appreciate having a record of the follow-up care, so please do the following: Schedule an appointment with your primary physician or an eye care specialist. After your child’s follow-up examination, complete the bottom portion of this letter and return it to the office at your school site.” I called the author of the letter, asked her what would happen if we didn’t test him, and she said “You need to test his vision.”

I wrote to the BSPED group, and said:

Hi fellow Berkeley parents,

The BUSD insists that our little 5yo nonverbal child get a vision test, or else (they say) he can’t go to school. (He is currently in K at Thousand Oaks.) We tried to go to an optometrist who might write us a note that said “cannot test” or something, but the optometrist and the BUSD Nurse (Rikki) told us the same thing over the phone: go to UC Berkeley’s optometry clinic, they have people there who specialize in testing the nonverbal. Well, we have an appointment (in about a week). But after extensive discussions with our insurance and UCB, this is going to cost us around $200. Have any of you ever heard of avoiding this test entirely? Somehow getting a waiver, or something else to avoid the $200?

We’re NOT concerned about our child’s vision – we believe he sees fine, he just doesn’t speak and has trouble with communication anyway (limited use of PECs).

We’re tempted to just skip the test and dare the district to kick him out of school for that.

Thanks for any advice,

Daniel Smith-Rowsey

Here was response #1:

UC Berkeley Optometry has an excellent clinic.  I would ask to see Dr. Susan Fisher.

They do take MediCal and I know they also will reduce fees for economic hardship.

Response #2:

Hello, Daniel

My non-verbal 7- year old sees an Ophthalmologist named Dr. Gordon Smith.  He used to have an office in Walnut Creek, but now he works in San Ramon office only.  I am not sure what insurance he accepts, but it may be worth finding out.

Dr. Gordon Smith

5401 Norris Canyon Road, Suite 206

San Ramon, California 94583-5406
(925) 277-1135

I’d think the district just needs a piece of paper to prove your son had a vision test.

Response #3:

Just want to throw this out there. The District Nurse, Ricki, has been an amazing support for our family at BUSD, despite her giant caseload. She’s a good egg and not particularly a shill for the District. If you circle back with her, let her know what you found out and reiterate that this is a financial hardship for your family, I think you’ll find her sympathetic.

Also, not that this is any consolation, but in the future your BUSD kiddo will get vision & dental checks during the school day free. It’s caught a couple of health issues for our family.

Response #4:

We also saw Gordon Smith in San Ramon. He took our insurance at the time vsp, sometimes you can get medical to cover it too.

Response #5:

Just wanted to echo Rebecca’s comments about Ricki Moreno.  Our family has worked with her extensively in the past, and she is wonderful.

A BUSD vision test also caught my daughter’s near-sightedness early, so I agree with Rebecca’s second point too.

Wishing you success with this challenge,

Rachel (also a TO parent—feel free to get in touch about any site-specific issue)

Response #6:

Daniel,

I’d LOVE for you to get that in writing from BUSD and share it with me. Or if you have this in writing already, please share it with me at my work address.

BUSD is the responsible party to pay for this vision assessment, not the parent. BUSD says it is necessary. IDEA requires evaluation in “all areas of suspected disability” and this is on BUSD. Remember your child is entitled to a FREE and appropriate public education (FAPE), at no cost to parent.

Write BUSD SpEd Director and school Principal and cc whoever is telling you this, and demand payment to UC up front or written BUSD confirmation of BUSD reimbursement for you for this necessary (BUSD told you it was) evaluation that BUSD says is required in order to access and benefit from public schooling.

You need the Special Visual Assessment Clinic (SVAC) at UC Berkeley for a child with a disability who is non-verbal – not any of the other typical UC clinics such as the binocular vision clinic. I believe SVAC will definitely cost more than the $200 fee you are describing.

See this link and call UC to inquire about fee and scheduling at this SVAC clinic: 
http://www.caleyecare.org/special-visual-assessment-clinic

Call me at DREDF if you need more info. I’ll be in W-F next week 10:30-6:30. I normally don’t broadcast my direct extension, but I have particular info about the SVAC clinic. For other calls we have to serve first-come, first-served by next available advocate. For all other calls, please call (……..)

All of these responses were within a couple of hours of my initial email! In terms of the specific issue at hand, soon afterward, I emailed the nurse, Rikki, and she did write back that though a follow-up is strongly recommended, it isn’t required. Whew! Nonetheless wifey and I found a person within our network who can see nonverbal kids, and this will cost us $10.

The larger point is that today I feel very lucky to be in this community that is so quick to be helpful. Personally, when I get emails from people I’ve never met, I can rarely be bothered to respond. I also feel lucky that Dar wasn’t born with this condition 20 years ago, when email and the internet was still something exotic, and when autism resources didn’t compare to what exists today. I am fortunate how many nearby people have already blazed this trail, and stand ready to help Johnny-come-latelys like me. Thank you, community.

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