[blindkid] blindkid Digest, Vol 121, Issue 17 Discussion of the right goals and IEP for a legally blind child (Pui via blindkid)

Wed May 21 17:46:04 UTC 2014

Alyssa, unfortunately, it often takes a TVI or O&M instructor or going
to arbitration, or something similar to change things.  It is supposed
to be an IEP team but doesn't always work that way.

On 5/21/14, Alyssa via blindkid <blindkid at nfbnet.org> wrote:
> Hi Pui and listers in general,
>
> I'm sorry to hear about this experience, but unfortunately, it is far too
> common. I too have LCA and was given all kinds of grief from my school
> district. I've never had enough vision to read print, so they were forced to
> provide Braille instruction. I faced many other issues regarding other
> aspects of surviving the school day. The school administration and the TVI
> wouldn't allow me to use a cane in school. Their logic was that a cane is
> dangerous and will trip other students. I finally got a new O and M
> instructor who argued on my mom's side saying I needed to use a cane in
> school. It shouldn't have taken them that long to agree, but no matter how
> many times I got injured during sighted guide, since the school made
> students do it, they didn't want to budge. It was finally mostly resolved
> with few exceptions including fire drills. I'm telling this story to let you
> know you aren't alone in these struggles. Feel free to contact me with any
> questions about LCA, blindness in general, or for any help you need. The
> email address I'm using to write this is a good one to reach me at.
> Alyssa Henson
>
> Sent from my iPhone
>
>> On May 20, 2014, at 9:21 AM, Pui via blindkid <blindkid at nfbnet.org>
>> wrote:
>>
>> Thank you Jennifer for sharing your sons' experience. Those are the very
>> same issues I anticipate for my son at the same age, and that is why I am
>> standing my ground.
>>
>> My understanding of IDEA is that for any blind or VI child, braille is the
>> default. My son is already considered "legally blind" so it's not like I'm
>> asking for braille because he is only a " little" visually impaired.
>>
>> Last night, I sent off an email to my son's ophthalmologist to write to
>> the district to confirm that LCA is degenerative, and that his 20/250
>> vision with nystagmus (dancing eyes), reduced field of vision and eye
>> fatigue is NOT the same as another student with 20/250 vision and without
>> nystagmus etc. Due to these factors, his ability to read even large print
>> is compromised.
>>
>> Today, I plan to look at our state standards for kindergarten and align
>> them with his braille/VI goals so the IEP goals justify the service
>> minutes and daily instruction. Then I plan to forward case studies of
>> students with low vision who were given mostly large print. These studies
>> detail how the students started falling behind in third grade when the
>> demands of the curriculum increased. I want the district to know that I
>> know that this will happen, and that I did tell them this even before he
>> started kindergarten. My hope is that they would not want to be proven
>> negligent in providing a FAPE when his braille skills are not enough and
>> his print skills not sufficient once he's in third grade.
>>
>> Yes, braille is hard at first for everyone but once the child has mastered
>> it, schooling becomes easier for everyone involved. Goodness knows I would
>> like it easier too!
>>
>> Thanks,
>> Pui
>> Sent from my iPad
>>
>>> On May 20, 2014, at 6:51 AM, Jennifer Duffell-Hoffman via blindkid
>>> <blindkid at nfbnet.org> wrote:
>>>
>>> Re: Discussion of the right goals and IEP for a legally    blind
>>>      child (Pui via blindkid)
>>>
>>> I want to thank Pui and Heather for having this discussion on our
>>> listserve.  The discussion, both from the standpoint of vision loss and
>>> the school's response to my earliest inquiries about Braille services,
>>> reflects my sons' experience very closely.  My sons are 15 and 13 and
>>> both, as of this school year, know the Braille code but are far from
>>> being Braille literate.  Because they are not Braille literate and
>>> because they cannot sustain print reading they face a jumble of
>>> accommodations to get them through each school day, each
>>> quiz/test/standardized test and PSAT/SAT. If they were Braille literate
>>> things would be much simpler not only for my sons, but also for the
>>> classroom teacher and the TVI.
>>>
>>> My understanding of IDEA is that the school system must prove that
>>> Braille is NOT an appropriate medium for the particular student--it seems
>>> to me that the student has to be Braille-literate before it can be proven
>>> this is not an appropriate reading medium!
>>>
>>>
>>>
>>> Jennifer A. Duffell-Hoffman
>>> NFB BELL in SC, State Coordinator
>>> SC Parents of Blind Children, State President
>>> Lancaster, South Carolina
>>> Mobile: 803-287-5391
>>> E-mail: jaduffell at yahoo.com
>>>
>>> The National Federation of the Blind knows that blindness is not the
>>> characteristic that defines your or your future. Every day we raise the
>>> expectations of blind people, because low expectations create obstacles
>>> between blind people and our dreams. You can have the life you want;
>>> blindness is not what holds you back.
>>>
>>>
>>> ________________________________
>>> From: via blindkid <blindkid at nfbnet.org>
>>> To: blindkid at nfbnet.org
>>> Sent: Tuesday, May 20, 2014 8:00 AM
>>> Subject: blindkid Digest, Vol 121, Issue 17
>>>
>>>
>>> ----- Forwarded Message -----
>>>
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>>> Today's Topics:
>>>
>>>   1. Re:
>>>   2. QWERTY mPower for Sale (Debby B via blindkid)
>>> Thank you Heather for taking the time to reply. You write so eloquently
>>> of the struggles I am having with the IEP, and the reasons why. I know
>>> the IEP team wonder why I am "making my child blind" by insisting on
>>> braille. Firstly, My husband and I did make our son blind because we are
>>> both carriers of the genetic mutation that caused his LCA!! Secondly, now
>>> our job as parents is to ensure he gets those blindness related skills so
>>> his vision impairment will enable him to carry on with life just like his
>>> sighted brother. When I found out my son had LCA and it was degenerative
>>> I asked myself the same questions and did some research of low vision
>>> folks and their experiences with schooling. I quickly concluded that my
>>> son would be functionally illiterate without braille when the day would
>>> come when he would lose more vision. Of course I don't look forward to
>>> him losing more vision but it is what it is.
>>>
>>> I just requested the district perform a LMA on my son. A few months back
>>> the CA school for the blind did a technology assessment on my son at my
>>> request and concluded that technology would be a part of his future. The
>>> VI department did not label my son as a dual learner. I did. Their
>>> philosophy is to not teach a student braille until they go completely
>>> blind. However to their credit they did listen to me after I showed them
>>> the braille laws under IDEA.
>>>
>>> I know my child has a lot of functional vision and I do want him to
>>> utilize it. I am not asking for him to do all his work in braille. I
>>> understand that it will mostly be print, but I do want him to use braille
>>> on a daily basis so he is a part of both worlds.
>>>
>>> I remember reading an article in Reflections about your advice to a
>>> parent of a low vision child learning braille. I purchased the Mangold
>>> program and I put the sleep shade on him for the first few months. Now he
>>> is pretty good at using his fingers without trying to read braille with
>>> his eyes which he did a lot of last year. Seeing and hearing him read
>>> braille letters, contractions and basic sentences (with guidance) tells
>>> me that braille is working for him. He has some bad habits that are
>>> typical for beginners such as rubbing the braille sometimes, not always
>>> tracking correctly, not using all his fingers, incorrect fingering on the
>>> brailler etc. However I believe those are reasons why he needs daily
>>> braille. It isn't the minutes that matter as much to me as the fact that
>>> he continues daily instruction at school. Otherwise he gets the
>>> impression that school is for print everyday, and braille sometimes if
>>> the TVI shows up. I believe that will make him
>>> resistant to braille because he likes to do what everyone else is doing
>>> and is even sensitive about wearing glasses sometimes. I have read too
>>> many stories of adults who wished they had learned braille as a child.
>>>
>>> Most of my comments I have made public on this forum even though many of
>>> you have been kind enough to offer an opportunity for me to discuss this
>>> privately. I have chosen to do it like this to aid other parents with low
>>> vision kids who may have similar issues.
>>>
>>> Thanks,
>>> Pui
>>>
>>> Sent from my iPad
>>>
>>>> On May 19, 2014, at 1:14 AM, Heather Field via blindkid
>>>> <blindkid at nfbnet.org> wrote:
>>>>
>>>> Hello Pui,
>>>> Sorry this e-mail is so long but I really wanted to share all my
>>>> thoughts with you. Congratulations on standing up to the IEP
>>>>
>>>> team. That's a hard thing to do. You're obviously a great mum!
>>>> I would agree that these goals are too easy. He should know more than
>>>> this at the end of kindergarten. Also, it may be that
>>>>
>>>> you are dealing with a more complex situation than you realise. I have
>>>> observed this situation many times when attending IEP
>>>>
>>>> meetings as an advocate with parents who are fighting for braille for
>>>> their child. To most IEP team members, including the
>>>>
>>>> TVI, parents Insisting on braille for a child who appears to be
>>>> successfully functioning like a sighted child, seems bizarre,
>>>>
>>>> even cruel and harmful to the child; because, to them, "braille" equals
>>>> "blind". They cannot imagine why you would want to
>>>>
>>>> "make your child blind". This reflects their lack of experience with low
>>>> vision adults who use braille as one of their tools.
>>>>
>>>> Yet, to you, understanding the degenerative nature of your son's eye
>>>> condition, and knowing that braille is an invaluable
>>>>
>>>> tool in the skills toolbox of many successful low vision adults, you are
>>>> in a position to see the situation from a different,
>>>>
>>>> completely functional, unemotional perspective. I believe you're taking
>>>> the right approach in trying to reason with the
>>>>
>>>> district staff. You are on a mission to educate them regarding your
>>>> son's real learning media needs, despite the TVI.
>>>>
>>>> However, rather than arguing with them about instruction time I would
>>>> take another tack.
>>>> In the light of no hard evidence, IEP team members usually give far more
>>>> weight to what the "professional" TVI says than they
>>>>
>>>> give to what the parent says. They usually write you off as a difficult
>>>> parent who doesn't really understand what's going on
>>>>
>>>> with their child.So, what you need is evidence to show the IEP team that
>>>> children with some functional vision are often
>>>>
>>>> taught braille on the basis of researched, needs-based factors. To this
>>>> end, I believe that having your son assessed, using
>>>>
>>>> the NFB's Reading Media Assessment (RMA), would give a clear,
>>>> evidence-based determination on whether or not he should be
>>>>
>>>> treated as a duel learner or a braille reader/writer. The RMA does take
>>>> future learning needs, as well as parent observations
>>>>
>>>> into account in determining the results. It also considers the future
>>>> needs of your child as a learner with this particular
>>>>
>>>> eye condition. In my experience, most TVIs don't have a grasp of the
>>>> future ramifications of the reading media decisions they
>>>>
>>>> make for children and their decisions are driven much more by the
>>>> emotions around "making a child blind" by insisting they
>>>>
>>>> use braille, or by the need, albeit unconscious - to lessen their heavy
>>>> case load and keep a child using print as long as
>>>>
>>>> possible. They already have heavy case loads and they don't want to have
>>>> to find 300 minutes per week for a child who, in
>>>>
>>>> their opinion, doesn't need braille only instruction. Furthermore, the
>>>> members of your son's IEP team are almost certainly
>>>>
>>>> ill-prepared to make an informed decision on his future reading media
>>>> needs for the three following reasons.
>>>> 1. they fail to consider that your son's vision is currently the best it
>>>> will ever be; it will only get worse from here. Even
>>>>
>>>> those with normal vision experience some degree of vision loss as they
>>>> age. so, even under normal circumstances, your son's
>>>>
>>>> vision is going to get worse as he ages. With so little vision already,
>>>> any degree of loss has major implications for his
>>>>
>>>> functional use of print to read and write.
>>>> 2. They do not really understand the degenerative nature of his eye
>>>> condition and how that plays out, with possible vision
>>>>
>>>> loss occuring even while he is still in elementary school. They don't
>>>> want to consider it for all sorts of emotional,
>>>>
>>>> personal fear-based reasons.
>>>> 3. Few, if any, of the people on the IEP team - including the TVI, who
>>>> are supposed to be considering your son's future
>>>>
>>>> reading meadia needs, will even be acquainted with a blind adult, let
>>>> alone a person with your son's specific, degenerative
>>>>
>>>> eye condition. They don't know anything about what blind adults need to
>>>> function successfully in the sighted world.
>>>> For these reasons, they are ill equipped to make any fact-based decision
>>>> regarding his future reading media needs.
>>>>
>>>> The place to look, when considering your son's future reading media
>>>> needs, is among the adult population of blind and vision
>>>>
>>>> impaired people. . As an adult blind person I have a number of adult
>>>> friends who have your son's eye condition and I can
>>>>
>>>> assure you that not one of them use print to achieve the tasks of daily
>>>> living and working. Some of them have the vision to
>>>>
>>>> read print if they need to,but braille is their medium of choice. One
>>>> woman I know has enough vision that, if she wears very
>>>>
>>>> strong glasses, she can see to read regular print. But, she only uses
>>>> those glasses if she needs to see something she hasn't
>>>>
>>>> labeled in braille, or to check a child's worksheet etc. It is such an
>>>> unpleasant, eye-straining, head-ache inducing
>>>>
>>>> experience that she only uses those glasses in essential, work related
>>>> situations. She doesn't even read her print mail with
>>>>
>>>> them; she scans it into her computer or uses a human reader. So, you and
>>>> I know what a difference braille will make in your
>>>>
>>>> son's life as a blind adult.
>>>>
>>>> As a blind person who is a certified special educator myself, and
>>>> knowing all of this other influencing background
>>>>
>>>> information, my hunch is that the TVI isn't doing what's best for your
>>>> son by labeling him as a duel learner. In your
>>>>
>>>> position, I would request he be assessed using the RMA. The RMA is the
>>>> only assessment which is research-based and the
>>>>
>>>> results have been found to be extremely reliable over time.
>>>> Alternatively, his current assessment, the one used to label him
>>>>
>>>> as a duel learner, was done using a Learning Media Assessment (LMA). The
>>>> LMA is not research-based. It is a set of tests and
>>>>
>>>> suggested observational situations that a TVI can use to make a
>>>> subjective assessment of how well a child can use their
>>>>
>>>> vision to function in the school setting. In this assessment, a child's
>>>> vision is assessed as being functional based on
>>>>
>>>> factors such as how well they use visual aids, preferential seating,
>>>> optimal lighting etc. Ie. it assesses how functional the
>>>>
>>>> child's vision is under optimal conditions at school. Worse, the
>>>> assessment is conducted by the same TVI who will be
>>>>
>>>> providing the instruction. She gets to decide, on the basis of her
>>>> subjective assessment, whether she wants to teach this
>>>>
>>>> student braille or not. At very least this can be called a conflict of
>>>> interest. On the other hand, the RMA is research-based
>>>>
>>>> and also asks questions of the parent(s) and the classroom teacher, does
>>>> not permit the use of visual aids or optimal
>>>>
>>>> lighting etc. It seeks to gather information on vision use by the child
>>>> at home and in the community in an effort to
>>>>
>>>> establish the true, real world "functionality" of the child's vision
>>>> over time and strain during the day. You are legally
>>>>
>>>> allowed to request that your son be given an independent assessment for
>>>> which the school district must pay. the Reading Media
>>>>
>>>> Assessment (RMA) is provided free, online by the NFB. The tester fills
>>>> in the information online where the assessment and
>>>>
>>>> results can be accessed by anyone who is given the private login info.
>>>> Everything is provided, even printable reading
>>>>
>>>> passages for each grade level, and instructions for how the student
>>>> should sit while reading, and that no reading aids can be
>>>>
>>>> used during testing. The results/Report/recommendations can be printed
>>>> out and presented at an IEP meeting. So, it should be
>>>>
>>>> very easy to find someone to administer an independent RMA, eg. a
>>>> counselor, a psychologist, a special education teacher, or
>>>>
>>>> a TVI from another district could do it. When the members of the IEP
>>>> team see the evidence, obtained independently using a
>>>>
>>>> research-based assessment tool, it will be extremely difficult for the
>>>> TVI to refuse to teach your son using the reading and
>>>>
>>>> writing media which the assessment says he needs. If the TVI objects you
>>>> can request an explanation of the objections to the
>>>>
>>>> results of a research-based assessment tool administered independently
>>>> by an unbiased tester.
>>>> I suggest that you take this approach because, if your son turns out to
>>>> need braille exclusively and not to be a dual
>>>>
>>>> learner, then this "how much time" argument will disappear and no time
>>>> will be spent on goals such as developing visual
>>>>
>>>> efficiency and tracking. . You will be able to say that you are now not
>>>> discussing how much "braille" time your son receives
>>>>
>>>> but, instead, how much "reading and
>>>> writing" time he gets; braille is just the format/code in which he is
>>>> reading and writing. I encourage you to be proactive and continue to
>>>> reject the current IEP and request a new assessment and,
>>>>
>>>> on the basis of that, a new IEP. This assessment can be done within a
>>>> day or two of your request as it takes only a short
>>>>
>>>> time to administer it and, as soon as the parent report, and classroom
>>>> teacher report if you think it will be helpful, are
>>>>
>>>> entered on the website the results will be there at the click of one
>>>> button.
>>>> not signing it or arguing for more time will not be as effective as
>>>> having
>>>> your son assessed using the research-based Reading Media Assessment.
>>>> e-mail me off list if you'd like to chat about this more. I often attend
>>>> IEP
>>>> meetings in my area, assisting as a parent advocate in the same kind of
>>>>
>>>> disagreements. So, I am very aware of how hard they fight to keep from
>>>> having to provide braille.
>>>> Again, sorry for the long e-mail but I hope it helps.
>>>> Warmest regards,
>>>> Heather Field
>>>> _______________________________________________
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>>>
>>>
>>> Winona is selling her 32-cell Braille Note QWERTY mPower. It is in
>>> like-new condition, although it hasn't been used for several years and
>>> the battery has died. All cords, straps, instruction books, cds, and case
>>> are included. Due to the battery issue, she is only asking $1000.
>>>
>>> We would love to deliver it to someone at convention!
>>>
>>>
>>> Please contact Winona at wbrackett42 at gmail.com or myself at
>>> bwbddl at yahoo.com.
>>> Thanks,
>>>
>>>
>>> Debby Brackett
>>> bwbddl at yahoo.com
>>>
>>> ~"Kindness is a language which the deaf can hear and the blind can
>>> read."~Mark Twain
>>>
>>>
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>>
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-- 
Marianne Denning, TVI, MA
Teacher of students who are blind or visually impaired
(513) 607-6053