ADVOCACY
The definition of advocacy is the act of speaking on behalf
of or in support of another person, place, or thing. We advocate for what we believe in and for
the people we believe in. We have all been effected, either diminished or
empowered by the attitudes and expectations of those around us. Imagine that no
one expected anything of you. Imagine that you were perceived to be without any
gift or skill or promise to offer your friends or family or the society at
large. As advocates we will always
battle against diminished expectations. Often from strangers or from the system
at large but sometimes, from even closer to home. We must confront our own
attitudes about disability, about blindness, about illness and for some of us
about death to finally come to terms with and accept everything about our
children and along the road about ourselves. It is from this journey I think
that we develop our belief in our children and their abilities. Our role as parents, as advocates, as parent
advocates, often comes down to just that; believing in our children. Sometimes that's not as easy as it sounds and
getting there can be a process. For me that process involved learning to pay
attention and letting my daughter show me the way. There were some things I
needed to know before I could advocate well for her. I needed to know that she
was not broken and didn’t need to be fixed. I needed to know that I had done nothing
wrong, and had to release my sense of maternal guilt because she is beautiful
just as she is. I needed to know that no apologies were/are necessary, ever. I
needed to love my daughter exactly as she is and meet her where she is and
respect her autonomy in order to really advocate for her. That meant accepting
her completely and releasing any desire I might have to change anything about
her; to make her vision whole, to make her gait “normal”, to take away anything
that afflicts her. She is who she is just as she is and it is only from seeing
her truly and respecting her exactly as she is that I can advocate for
her.
From Elora’s earliest experience in formal education a great
emphasis was placed on visual learning. Even her IEP (Individualized
Educational Plan) goals stressed the importance of her residual vision.
Throughout her early education I was told by well-meaning professionals that
she could be a successful large print reader. This was wonderful news to me. It
meant my daughter wasn’t “really” blind. This was easy for me to accept because
Elora was very good at appearing sighted. She could learn a space very quickly
and then navigate it very well. Her vision loss is cortical meaning stemming
from her brain and affecting the vision center of her brain and its nerve
pathways and other than mild nystagmus (involuntary eye movement) she had no outward
indications of vision loss.
The doctors placed her visual acuity between 20/400 and
20/600. These numbers never had a concrete meaning to me. It was all in the
abstract. The professionals said my daughter could see well enough to read
large print and that was good enough for me. If she could read print she wasn’t
really blind.
I watched over time as she struggled in school. I watched her
hold a page up to her nose to see it. I observed the totally blind students who
were receiving braille instruction begin to learn to read while the low vision
students like my daughter floundered. It was counter intuitive to me. The children
that didn’t have enough vision for large print were more successful. Shouldn’t
it be easier for the kids who saw more? That was what the teachers had been
saying about her residual vision all along after all? She was a legally blind
child not learning braille and the totally blind children we had come across
over the years who were learning braille were doing better academically.
There were many signs that her vision was nothing near what I/they
wanted to believe. My heart was breaking and academically it just wasn’t
working. Finally I decided to pull my head out of the sand and do some research
and figure out what was happening to my little girl. I discovered a wonderful advocacy
organization of blind individuals and my education in blindness and what my
daughter would actually need to be a successful independent person began.
I learned that legally blind means blind and that I better get over it because it would only
hold her back if I let it hold me back. I learned that those abstract numbers that qualified her as
legally blind really meant that she had at least a 90% vision loss. My
wonderful little girl had been struggling to learn to read and write with less than 10%
of what I can see. Think about that.
Legally blind means you meet the legal definition of blindness. I learned that
large print might serve Elora in certain parts of her life. She might be able
to write checks to pay her bills. Enlarging technology may enable her to read
large print in very specific circumstances but would not provide her a path to
literacy.
Learning to read is happening all the time, as part of every
lesson for sighted children, they are surrounded by words. Spend a few hours on
any given day consciously observing the amount of print in your immediate
environment. Consider passing vehicles; busses, sides of trucks, license
plates, building signs and bill boards and if you enter a store all of the
advertising on every product plus magazines and circulars, the list goes on and
on. Now think about a preschool or kindergarten classroom. Print really is
everywhere! Our children are not seeing it.
Is it any wonder that a teacher of blind students one hour a
day even 5 days a week is nowhere near enough service time to teach a young
child to read? This really isn’t complicated. It’s mostly about resources. I
was lucky enough to find advocates and role models within the blind community
here in NYC and I learned that Elora needed to learn braille; a very simple code
created by a 12 year old boy. Her visual acuity meant that without braille she would
never be a proficient reader. Without braille she would be denied higher
education. In fact as the reading load increased in the higher elementary
school grades she would be unable to compete and would be forced into alternate assessment. Moreover she would never learn to
enjoy reading. She would be denied reading for simple pleasure, an absolutely
incalculable loss.
What Elora needed was EXACTLY the same as what any other
child needs. She needed to be able to READ!! Not just a few halting words at
a time but to truly be able to read.
If a child doesn’t learn to read by 3rd grade their
education will be in jeopardy. By 3rd grade reading isn’t the main focus
in the classroom anymore, they’ve moved onto social studies and math and
science. By 3rd grade standardized tests are a major part of
academic life. This is when parents are asked, even encouraged to move their
children onto Alternate Assessment. Most parents are often ill informed about
what that decision will mean in the long term. Be very clear, this
path will NOT LEAD TO A HIGH SCHOOL DIPLOMA. Please pay very close attention!! Your
child will answer no on every job application that asks did you graduate from
high school, because if fact he/she will not have receive a diploma therefore they will not have graduated. They may receive a certificate and attend a ceremony but they WILL NOT BE a HS graduate. This will severely limit
employment opportunities in adulthood. Your child may not attend college, he or
she may take a class as a non-matriculating student but may not enroll in any
degree program or join the military. Once on alternate assessment your child
will not earn any high school credits once they are of HS age. They will not
take any regents exams and will NOT earn a regents diploma nor are there at present
any other options available under alternate assessment unless grandfathered in
(for older students only).
I have learned as the parent of a blind child, the most
valuable resource I can tap into is that of blind adults. The most frequent
piece of advice I receive from the blind adults I have met is to fight for braille
for my daughter now. Not to relegate her to an inferior education where she
will be forced to learn braille as an adult and spend precious years playing
catch up. It is our challenge as parents to try to replace that visual print
with its tactile equivalent in our child’s environment. It is our job as
advocates to demand that that be done in the classroom and that our blind child
receive exactly as much access to braille as his/her sighted peer does to print. I have as my
daughter’s advocate had to fight to have braille added to her IEP. This has
been a battle on a number of fronts. The most significant has been convincing educators that they can’t “teach” my daughter to see, but they can
teach her to read.
This short article is not intended to reinvent the wheel but
to highlight from personal experience some places that need particular
attention. Choose the right school, managing the IEP and get a good AT
(Assistive Technonlogy) evaluation. Please see Future Reflections and the NFB.ORG website for more information.
1) Finding a school: The basic formula is to find a good school that meets
your child’s academic goals, (these should be set high because kids will reach
for the bar wherever the bar is set), in the Least Restrictive Environment,
meaning a regular classroom or integrated setting because a classroom should
look like the world we live in and prepare kids for the world, as close to home
as possible (to increase the likelihood of social relationships in the child’s
community). This is where FAPE (Free
Appropriate Public Education) also comes into play; it requires a school district to provide a
“free appropriate public education” to each qualified person with a disability
who is in the school district’s jurisdiction, regardless of the nature or
severity of the person’s disability.
2) Accessing literacy: Here’s the law; The IEP Team shall…in the case of a
child who is blind or visually impaired, provide for instruction in Braille and
the use of Braille unless the IEP Team determines, after an evaluation of the
child’s reading and writing skills, needs, and appropriate reading and writing
media (including an evaluation of the child’s future needs for instruction in
Braille or the use of Braille), that instruction in Braille or the use of
Braille is not appropriate for the child. (Section 614(d)(3)(B)(iii))
What does this actually mean? It means, first of all, that the school
must provide Braille. Secondly, it means that four specific areas must be
examined before Braille can be ruled out. The IEP team, which includes the parent(s), must evaluate
1. the child’s present reading and
writing skills;
B. his/her reading and writing needs;
C. the appropriate reading and writing media (which could end up being
braille, print, or both braille and print); and
D. any need the child might have in the future for braille.
Only if the results of these evaluations show that the child does not
presently need braille and will not need braille in the future, can braille be
ruled out. (Castellano)
3) AT (Assistive Technology) evaluation: AT as defined in IDEA;
•evaluation of the technology needs of the individual, including a
functional evaluation in the individual's customary environment;
•purchasing, leasing, or otherwise providing for the acquisition of
assistive technology devices for individuals with disabilities
•selecting, designing, fitting, customizing, adapting, applying,
maintaining, repairing, or replacing of assistive technology devices;
•coordinating and using other therapies, interventions, or services with
assistive technology devices, such as those associated with existing education
and rehabilitation plans and programs;
•assistive technology training and technical assistance with assistive
technology for an individual with a disability, or, where appropriate, the
family of an individual with disabilities;
•training or technical assistance for professionals, employers, or other
individuals who provide services to, employ, or otherwise are substantially
involved in the major life functions of individuals with disabilities.
The 1992 Amendments to the Individuals with Disabilities Education Act
(IDEA) states that assistive technology devices and services must be considered
on an individualized basis and become a part of the Individualized Education
Program (IEP) if the child needs it to benefit from his educational program.
Listed below are some of the steps
that can be taken to for students who need assistive technology to benefit from
their IEP:
A. Make the school aware that
assistive technology needs to be considered as part of the student's
educational plan. This should be done by requesting, in writing, to a
representative of the school district, an evaluation or re-evaluation of the
child. State that you believe your child can benefit educationally from the use
of assistive technology.
B. The school district must provide
the evaluation. If you receive an evaluation that is not appropriate, ask for
an independent evaluation.
C. Upon completion of the evaluation,
an IEP meeting should be convened to determine how to meet the goals and
objectives for the student's educational plan with the use of the appropriate
assistive technology.
D. Remember, according to federal law
and policy, if your child needs assistive technology to benefit from his/her
educational program, it must be part of the IEP and at no cost to the parent.
Policy letters are useful tools in reminding the school district of the
student's rights as they relate to assistive technology. If you are dealing
with a negative response to your requests for proper evaluation, provision of
technology, or taking technology home, for example, these letters can and
should be used.
4)
IEP Meetings:
The typical IEP meeting: First they
can be extremely intimidating. I don’t have a professional degree and I was
always the one person in the room that didn’t have letters after my name. I was
however the only expert on the child in question. Many of the professionals
present had met with her only briefly for evaluation purposes. Her classroom
teacher and the Teacher of Blind Students were usually the two people on the
school based team that had spent significant time with her. They were often
truly well-meaning individuals with the best of intentions. It is helpful to recognize however, that when
working in a system that most often defines a child with different abilities by
what they perceive to be “wrong” with that child “that the road to hell is
paved with good intentions”.
When you are in agreement it’s much
easier to form a team with the other members working on your child’s IEP. It’s
very nice when that happens. It doesn’t always but that doesn’t change the
outcome it just makes getting there more challenging.
v Never ever miss and IEP meeting!
v Bring an advocate, if not bring a
friend
v Remember you really are the leader at
the IEP meeting (they just think they are)
v Consider the classification; Blind/VI
supports funding which = services
v Try not to add labels onto your child
unless the label comes with services
v Everyone else at the table has a
short term goal or an annual goal
v Parent’s goals are lifelong goals
v You are the only one who knows how
far your child has come, who knows her/his capability, her/his motivation, and
her /his heart.
v For them this is one of many IEP
meetings….for us this is life!
v If standardized tests are a problem
research opting out
v Consider Portfolio Schools before
alternate assessment
Now, making it work is where the
advocacy part comes in. Be the squeaky wheel.
Push the system. Make the system work for your kid. Keep a journal. Copy
everything. As soon a reasonably possible have your child begin to attend their own IEP
meetings, even if it's just a portion of the meeting.
If you disagree with the school
district at any step in the process, you may request an impartial due process
hearing. If you need legal assistance, you may contact your state Protection
and Advocacy (P&A) agency. In addition, each state has a Parent Training
and Information Center that may be able to offer assistance.
There is much more to say but again
I’m not reinventing the wheel. As I write this Elora is on her way to turning
18. She’s is now in 10th grade and on track to receive an actual HS diploma by
the time she is 21. She is still evolving and developing and reaching new goals
every day. And I am still learning from her every day.
