Webcast
KMCO Archives
Foresight: Your Child's Vision in the Era of Managed
Care
November
22, 2000
Faye Eldar: Hello everyone. Welcome
to our broadcast of KMCO about children with special
health care needs and managed care. Today we're going
to be talking about managed care and your child's vision,
focusing on vision care for children with special needs.
Our speakers today are Dr. Sandra Block who is a professor
and optometrist at the Illinois College of Optometry
and Pamela Caldwell who is a parent from Chicago, Illinois.
This
is Faye Eldar, your moderator, from the University of
Illinois School of Public Health, Center for the Advancement
of Distance Education. We're glad that you've joined
us today and will be listening to our show about vision
care. First I'd like to ask each of our speakers to
please introduce themselves to the audience. Dr. Block
Sandra
Block: Hi, my name is Dr. Sandra Block. I am an
optometrist. I graduated 19 years ago at the Illinois
College of Optometry and then I did a one-year residency
in multipli-handicapped children, emphasizing their
visual needs. I also have a masters in education because
I felt that background would help me a great deal in
working with kids. In addition, I work with Special
Olympics. I'm a director of education and research for
the Special Olympics Opening Eyes program, which is
an international program. And currently, I am working
at the Illinois Eye Institute which is the clinic associated
with the college in the pediatric binocular vision service.
Pamela
Caldwell: I'm Pam Caldwell. I'm a parent of twin
boys who are multipli-handicapped. They're almost 13.
Joey has cerebral palsy and is autistic up right to
the emh cognitive level. Patrick is profoundly cognitively
impaired, totally non-verbal, has some feeding issues
and is somewhat physically involved, but does ambulate
by himself. I've obviously been involved in all these
issues for almost 13 years and had various jobs in the
community working with parents and service providers
and I'm currently working LANS, which is part of Illinois,
every community in Illinois is part LANS and I work
on the child abuse prevention issues.
Faye
Eldar: What does LANS stand for Pam?
Pamela
Caldwell: LANS is the local
area network of care and every community or township
in Illinois is in a LANS. It's based on a geographic
area and it's primarily to keep kids with emotional
disorders in their communities as opposed to being either
sent to another residential facility or to foster care.
Faye
Eldar: Okay, well that's very interesting. Dr.
Block, I'd like you to start today and explain to us
please what is vision care and who are the professionals
who are involved in vision care?
Sandra
Block: Well, the topic of vision care is actually
a pretty global topic. The most basic would be the medical
professionals which are the optometrists and the ophthalmologists
who provide the assessment skills to identify number
one, can the child see? If they can, what can they see?
Do they have any eye health problems? Do they need any
types of spectacle corrections? Do they have recommendations
to refer the child to people who have specialties in
other vision services?
The
other vision services are more of the educational component.
The vision itinerant teacher who works with kids in
educational environments or the orthoptist who provides
vision training for children in usually a medical-type
setting, or the O&M (Orientation and Mobility Specialist)
who helps kids who have visual impairments ambulate
or get around in their environments. Hope I've covered
most everybody. I don't want anybody to be left out.
There
are some vision itinerants that specialize in the younger
children, the zero to three group, and there's some
who really work with the older kids. They should all
have some experience at different levels of skills.
They'll have different needs and the vision itinerants
should be able to work with the different level of skills.
The
difference between the optometrist and the ophthalmologist
is an ophthalmologist is basically an M.D. or a D.O.
who's really specialized with some additional training
in the area of eye care and is the one who predominantly
does the surgical intervention. Optometrists do the
exams as well as the ophthalmologists. So both of them
are capable of doing an exam. Both professions have
people who specialize in pediatrics or are geared to
assess the skills of children who may be non-verbal
or unreliable. And anybody who has a child with special
needs should make sure that before they make their appointment
that the practitioner they're going to see is comfortable
and has the special techniques available to them if
they're going to assess a non-verbal or someone whose
verbal skills really you don't want to rely on. Does
that help a little bit?
Faye
Eldar: Oh
yes, I think that it does. Now could you explain something
else to us? We hear about people having eye tests or
vision tests, what's the difference between vision screening
and vision testing?
Sandra
Block: Well, there's a big difference and actually
that's an excellent question cause oftentimes a parent
will come in and will say, well the school did eye exams.
In general, a vision screening just looks at a cursory
level, a very superficial level of what the child can
see and the state makes some decision as to what is
considered a pass and a fail. It's not the medical professionals
that have done that. And the child will pass a screening
meaning that well, they have a better than average visual
skill and there's nothing blatantly wrong that the screener
can see, like there's no eye turn. The child seems to
be using their eyes adequately. There doesn't seem to
be any redness or any discharge. That's kind of a screening.
That's all they do. They look at the child. They say
I don't see anything obvious you know there's no no
drippy drooly issues here where there might be some
infection. The child seems to be functioning at a particular
level of vision meaning, you know, we all know what
20/20 is. We've heard that term. In general, children
that see 20/40, which is an okay level but not not one
that we want our kids to see at, they're considered
almost passive. That's the borderline for pass fail
on children. But they it really does not go into any
depth. It doesn't say that the eyes are healthy. It
doesn't say whether there's any refractive error which
is near sightedness or far sightedness. Solar stigmatism.
Faye
Eldar: Dr. Block, what you're saying is that a
child can pass a vision screening, but they might not
be able to see well enough to see the blackboard at
school, to see the print on the computer screen, or
to be able to read effectively.
Sandra
Block: Well, actually you've touched on a number
of things, Faye. What is it they probably can see everything.
But the quality of their vision is not what's tested.
It's just looking at visual acuity. Can they resolve
you know can they see the letters? Probably yes. Can
they use their eyes efficiently? That's a question that
can't be determined by a screening.
Faye
Eldar: Okay and what is vision testing?
Sandra
Block: Well, a full exam would look at how well
can they see and they there really is an emphasis on
using techniques that are appropriate for a child. Not
all kids are very reliable with their alphabet. There
are probably a dozen different ways of assessing visual
acuity in children. Some of them are designed for non-verbal
children and some of them are designed for matching
skills and some are signing. So there's a lot of ways
of getting more information from a child. Screenings
won't go into that depth. And we want to know how well
do they use their eyes? Can they move them efficiently
from one position to another because the academics really
require good eye movement skills. You know if you're
asking a child to read or to focus on a computer screen,
they have to be able to look at the target, hold their
eyes there and maybe go to another target. For example,
the keyboard or something else that they're using a
paper on the desk.
We're
looking to see if the eyes are postured in a straight-ahead
position. We've all seen kids who have an eye turn in
or out and children with special needs have a much higher
prevalence of eye turns which is also referred to as
strabismus esotropia or exotropia. Those are just some
terms that people probably heard. Those are one of the
things that are assessed.
We also look to see if there's any ambliopia or lazy
eye, meaning there's a difference between two eyes.
One sees much better than the other. An eye exam will
also tell whether the child has any need for corrective
eye ware, you know lenses for whether it's for far or
for near or for all the time. There are some children
who wear eye ware just for protection for a couple of
reasons. Number one, if they have a lazy eye or ambliopia
so in one eye you want to make sure the eyes are protected.
If the child has any types of head banging or seizure
disorder and you're worried about them damaging their
eyes, there's special eye ware that's oftentimes used
for those children.
In addition to those basic things, a good eye health
evaluation is very important. Looking at the pupils
to make sure they respond, to look at the outside of
the eye to make sure it's healthy and to look at the
inside of the eye. Each one of these things affects
how well the child sees or uses their vision.
Faye
Eldar: Now,
are there any disabilities that are associated with
higher risks of vision problems in children?
Sandra
Block: Oh, absolutely. One of them would be Downs
syndrome. Downs syndrome children have a high prevalence
of eye turns when they're referred to as special needs.
They have a high amount of ambliopia. They have something
called Kareta conus where the front surface of their
eyes is steeper than it would be in someone who has
a normal cornea. Actually they have a list of 10 or
12 things that that make them at very high risk for
vision problems and they really should be tested very
early when they're babies and regularly over their life
span. So
there are a number of eye health problems that need
to be watched.
Faye
Eldar: And what about any other disabilities?
Sandra
Block: It's not uncommon for children with CP to
have motor problems. They also have a higher prevalence
of eye turns. They also have eye movement disorders
or accommodation or focusing disorders because we're
talking about a neuro-muscular problem here and the
eyes are actually controlled by six muscles that control
eye movement as well as muscles that control their focusing.
Generally in adults you start to see by about 40 people
are having more trouble seeing up close because their
focusing system isn't working. Oftentimes--and that's
a normal aging process--oftentimes in children with
cp, you may see that very early on that that focusing
system is not working very well. So children with cp,
I'm much more concerned about motor and neuro-muscular
types of issues. Things you know if you take a child
with cp and you put them on a computer screen, they
may have a very difficult time if there's a lot of information
that you're asking for them to resolve all at one time.
It may need to be fine tuned a little bit.
Faye
Eldar: Now what do you think are the most important
things that parents of children with special needs need
to know about vision care?
Sandra
Block: Well, the first thing is they need to know
about whoever they're going to see, whether it be an
ophthalmologist who specializes in pediatrics or an
optometrist who specializes in pediatrics, that a good
eye exam would include something about the visual acuity,
the eye movement skills, the posture of the eyes, the
eye health and should include a dilated fundus exam
on a regular basis.
Faye
Eldar: And what is that?
Sandra
Block: That's when you put the drops in the eyes
that make the pupil much bigger so that the eye care
practitioner can really take a good look at the back
of the eye to make sure everything's healthy. Children
who have been born premature are at risk very early
on for some serious eye health problems and a dilated
fundus exam is absolutely imperative for them to have.
All children should have dilated exams at least by the
age of six month three years and then periodically after
that. The kids should have eye exams at least once a
year from three on, but they don't necessarily need
to be dilated every year.
Faye
Eldar: You're
talking about all children in general or specifically
children with special needs?
Sandra
Block: Actually
all children because there are so many changes that
take place between birth and school age that every child
should really be seen annually once they hit the age
of three, three or four years when they're starting
to really use their vision to learn their environment.
Faye
Eldar: Are there ways to test vision for children
who cannot read an eye chart or who can't speak?
Sandra Block: There are many ways. There really
are. One of the ways we use is something called the
Lee symbols and this is one for kids who are non-verbal
and have pointing or matching skills. It's made up of
four symbols that most children are familiar with. They're
an apple and a circle, square and a house. So there
are things children are familiar with and you can get
them use to the targets before you actually do the test.
And really it's a matter of them pointing to a matching
chart or picking up an object that's the same as the
one they see.
There are also things that can be done for children
who are totally non-verbal and not willing to or capable
of matching. It's called preferential looking. Many
years ago there were some studies done that show that
babies really prefer to look at a stimulus or a pattern
versus something that's not you know not a pattern.
I'm sure everybody's seen a lot of the things that have
come out, the black and white stimulation for vision
for infants and young children. Well this is based on
that those those studies that were done. And the preferential
looking cards are based on on some of that information.
What happens is that it's a card that's 55 centimeters
in width and on one side of the card are black and white
bars. They're repeating bars in a particular width and
on the other side of the card is nothing. And what happens
is the examiner sits on one side of the card and the
child and puts the card up to the child and the child,
if they can see the gradings, will go and look towards
the gradings. If they can't see them, the card will
look the same on both sides and they'll just look all
around. They will not pick up fixation at all. It's
been a very very successful way of assessing children
who are basically non-verbal.
Faye
Eldar: Now Pam, you told me that just this past
week, you took one of your sons to the ophthalmologist.
I would like to hear from you about that experience
and also about how you found out about your sons' needs
for eye care and how you helped them deal with it and
help the eye doctor communicate and get along with your
sons.
Pamela
Caldwell: Okay. Well as Dr. Block, Sandy, said,
because my children were premature, we did have a follow
up almost immediately after they left the hospital.
Not, however, because of the common premature issue,
but because someone in the nursery diagnosed them as
having glaucoma and they sent me home saying if you
don't use these drops, your boys will go blind. Take
them to somebody else. Take them to a specialist. Well
the minute we took them to a specialist the specialist
said of course they tested high for glaucoma because
it's a pressure in the eye and they were screaming.
So you can't test them when they are screaming because
that will throw it off. So that was my first experience
with people who aren't familiar with even regular children
much less children with special needs. So neither of
them had glaucoma and we started seeing...we did go
start seeing eye care specialists regularly because
my husband and I are both very near sighted and because
they were at risk for issues because of their prematurity.
Joey was diagnosed as needing glasses when he was about,
I think four. But at that point, the ophthalmologist
said he's not going to wear them. He's not that bad.
We don't need to worry about it yet. A year later she
said oh we might want to think about getting glasses
now. At that point he was about minus three which is
pretty darned near sighted. She was right though. He
wouldn't wear the glasses. So for two or three years
he just didn't wear them and he couldn't see anything.
So besides being autistic, physically impaired, and
fairly low on the verbal scale, he couldn't see. He'd
have to get very close to people. But we had no idea
how to get him to wear his glasses.
Sandra Block: There's unfortunately no
magic.
Pamela Caldwell: Well he had a wonderful aid
who figured something out. A couple years ago, she decided
that he really had to be able to see and she was very
patient. She put his glasses on when he got off the
bus from school, at school, and then he was walking.
Well Joey is physically handicapped so he needed his
hands to either be on his walker or hold her to walk
so he couldn't pull them off plus then he got to see
more things as he was going down the hall so she did
that every day, gradually increasing the time and eventually
he just got use to them. He's also so sensory involved
and he didn't like anything on his head. That was a
big issue. And I'm sure that's a problem for a lot of
people, but because she got him use to it gradually,
eventually, he wears them all the time now. In fact,
he generally wants them on. Lately he's been taking
them off and playing with them but he still wants he'll
ask for his glasses. So that was a big breakthrough.
Sandra Block: That sounds wonderful. The
behavior modification that they did is usually the way
that most people say they get the most success with
a child who initially doesn't want them.
Parents will periodically run into plateaus where you
know the child's been wearing them for a while then
all of a sudden starts to feel uncomfortable and take
them off or throw them across the room you know it depends
on the ...
Pamela
Caldwell: We went through a lot of glasses!
Sandra Block: Oftentimes, if a child starts
to to show some discomfort with the glasses by throwing
them off, that might be a cue that something's changed.
Either the frame doesn't fit properly, the prescription
needs to be modified or something else is changing in
the child. You know it's a good sign to a parent to
to say maybe it's time for another eye exam. Other things
that are done with kids who are having difficulties
keeping their glasses on is to go to a support-type
frame because it's a little harder to get off, but they're
not pretty, unfortunately. Or using the Crokes which
is a strap behind the head.
Somebody once told me that in addition to the strap
behind the head, they had a child who pulled their glasses
down. So what they used is ribbons tied from one arm
one arm of the frame to the other and so that if they
pulled them down it wouldn't go anywhere. It went over
the head.
Faye
Eldar: Pam and I were talking about that earlier
when we were getting ready for the show that for our
children and for many other people we know that the
families have made decisions multiple times to change
eye doctors for their children with special needs and
you know it had a lot to do with the bedside manner
and also how the professional relates to the child.
And Pam, can you tell us a little bit more about that?
Pamela
Caldwell:
Sure. I mean I don't think that any professional has
to be your friend and they don't have to be wonderful
people with children. But they have to be able to deal
with our children and any and the adults with them on
a normal level and we put eye care people a few times.
Primarily, we see ophthalmologists.
I went to one ophthalmologist basically referred to
me as an expert in pediatric care and that was fine.
And then another Mom suggested another doctor because
this doctor was a neuro-ophthalmologist and since my
children are so impaired, she thought two specialties
would be helpful. And I went to that person for awhile
and I finally realized after three visits that were
just bothering me immensely that it was time to switch.
And I was asking around. I asked my pediatrician and
two pediatricians gave me a referral of a local doctor
and one of them said my kids should go to see him. So
I thought I would give it a try and it's been wonderful.
And
he says he specializes in everyone. I said what makes
you so good with these kids because even the first time
we went there his staff was very good. They told me,
well normally the tech would do a kind of preliminary
exam on the kids and she said you know what? I'm not
going to do that now. I can only do it after he sees
them, but I don't want to upset him, upset my son, so
we'll just put that off for now. I thought wow, that's
just common sense and no one ever does that. They always
think we've got to do this now before the doctor comes
in and so we'll do it. And then the kid's screaming
and we don't get anything accomplished. The doctor is
local which is a lot better than driving to one of the
main hospitals. But he's with a big hospital and I've
just been very happy. I found that with a lot of specialties,
it just it depends on on the doctor more so than the
establishment.
Sandra Block: I agree with you from from both an appearance
perspective as well as the perspective of a professional.
You have to be happy with the person that you're going
to. You have to be comfortable that they communicate
with the patient as well as the parents.
Faye
Eldar: You know while we are talking about families
making decisions about different eye professionals for
their children, let's talk a little bit about the role
of health insurance and how that might have an impact
on which eye care professionals you get to see or if
you can change them or what's appropriate for your child.
Sandra
Block: Well I'm not sure how much I'm going to
be able to respond as an educator in a clinical environment.
We see many kids who've come under the Medicaid or the
Kid Care programs, both of which cover eye exams from
us because we've already we have a third party person
who deals with that. But that is an issue. You need
to find someone who is under your plan. Pam, you're
probably much more in line with answers.
Pamela
Caldwell: Yes it's a big issue for any specialty
is finding a doctor that you like in your plan. And
that's why I say you don't always have to be to love
someone you go see. Sometimes you'll settle. But like,
as all three of us said, communication is very important,
even if it's, even if they don't have the greatest manners.
If I understand what they're saying, that's good. However,
I'll go for the good manner too. It's always an issue
because we have a great insurance plan. In fact, I'm
a PPO so I could go elsewhere and just pay an additional
small amount. It so happens the person I like is in
our plan. But I've also researched. I usually you know
I can go through the list of doctors and then call people
and say who do you have, who do you have on this list?
It takes a little more research but I think it's doable,
especially with a field that has as many people in it
as ophthalmology and optometry. It's harder sometimes
with something like an orthopedist where there are fewer
doctors.
Faye
Eldar: And does it ever happen in insurance plans
that people need to see an ophthalmologist but the plan
only lets them see an optometrist or vice-versa?
Sandra Block: It's usually the other way around.
There are more plans probably cover ophthalmology.
Faye
Eldar: Well, I know I, not for my daughter but for
myself and my health plan, I have an eye disease, but
my health plan only allowed me to see an optometrist
and when I went to the optometrist they said why did
you why were you sent here? You're suppose to see an
ophthalmologist. And it took awhile to get that sorted
out.
Sandra
Block: You had to get a referral however though
from your primary care person?
Faye
Eldar: Yes. Which is not really the person who necessarily
would refer you to the ophthalmologist. It would have
been the optometrist. Well the optometrist called the
primary care doctor and said that this patient needs
to see an ophthalmologist for her eye disease. But some
time was lost in in getting this figured out and do
you find int your experience, does health insurance
usually pay for childrens glasses?
Sandra
Block: To be honest, I can't answer that accurately
because I don't deal with it at all.
Okay. I'm going to say generally no. But some there
are a few plans that do but generally no because that's
why it's such an issue for people when the glasses get
broken is the insurance.
Faye Eldar: My experience in dealing with the
Title 21 program which is called Kid Care in Illinois
with Title 19 which is Medicaid and Title 5 which in
Illinois is called the Division of Specialized Care
for Children that glasses for children with diagnosed
eye conditions are covered and Medicaid glasses are
covered for children.
Sandra
Block: They cover one pair per year. And if you
need a second pair, then you need to write for pre-approval
which it's not impossible, but the time it takes to
do that is often unfair to children.
Faye
Eldar: Then the children go without glasses while
the paperwork is being done and we all know children
break their glasses.
Sandra Block: Oh constantly. I oftentimes will
recommend to my parents that are purchasing them outright
is that they make sure there is a guarantee on whatever
frames they have and generally a year is a good time
for the children in Medicare and Kid Care or Medicaid
or Kid Care.
There
are ways of getting some of the foundation for programs
that churches whatever Lions clubs to help kids out
sometimes if there is no other way. If you have a child
who is very near sighted and they break their glasses,
it's not fair for the child to go without a correction.
So oftentimes we'll make recommendations that the service
organizations be contacted or other resources that we've
heard about along the way. Those kinds of programs really
do make a difference.
Faye
Eldar: Well it's wonderful that you do that and
as parents, we know there's an unwritten law that childrens'
equipment only breaks on holidays, weekends, and vacations
when the providers are closed and when you have a child
that won't eat if they don't have their glasses, that's
a really big problem.
Sandra Block: Oh yes.
Faye
Eldar: If they're in school, they could suffer really
greatly. And I have seen a lot of the Discount Opticians
that they have a childrens plan that you can get coverage
for replacement of a glasses break.
Sandra Block: There are many places that will
offer those kinds of things. Everybody's very much aware
that kids go through many glasses and you don't have
to be a special needs kid to do that.
Pamela
Caldwell: Sometimes they don't break them as often.
And
actually I want to point out, we actually buy our glasses
from the doctor's office and they're cheaper there than
elsewhere because he said I don't need to make a profit
on my glasses. I charge you for my services. So while
I would assume that buying them from a doctor's office
would be more expensive, it's not necessarily the case.
Faye
Eldar: Oh that's interesting. I didn't know that.
How would you suggest that parents get started,
because you know if parents are not coming to the eye
institute where you have a support staff and they're
going to a doctor's office where they usually don't
have an office coordinator or a social worker there.
So how would you suggest parents get you know start
out getting this kind of information?
Sandra Block: To be honest, I think that the
contacts in the school system are oftentimes aware of
a lot of things. You know the vision teachers or the
special ed teacher are oftentimes aware of people who
are willing to help kids within the school system. A
lot of them are very local. A local church, a local
Lions club a local Kiwanis, you know depending on the
area. Somebody in the school is generally the knowledgeable
one that will help find those things.
Pamela
Caldwell: Well that's true if they go to a school
that has a lot of special needs kids but it's not necessarily
the case with a lot of inclusion. Our social workers
were very knowledgeable in finding resources. So I would
actually try them first. If not, my suggestion is to
go to the phone book and look up the service organizations
in the area or the church. Churches are oftentimes very
helpful.
Faye
Eldar: One thing I would like to bring up and I
think, Pam, you'll probably agree with this. I've found
as a parent my best resource is usually information
from other parents.
There are two large national organizations for families
of children with visual impairments. One is the National
Association of Parents with Children with Visual Impairment.
It's called NAPVI. The other one is the National Foundation
of the Blind Parents of Blind Children Division. They
both have national headquarters and they have groups
in every state. And they publish newsletters... for
our listeners, we have a resource section on our website
and we will be posting these resources and many other
resources related to childrens vision care needs and
you'll be able to visit that and get the resources and
phone numbers, the e-mail addresses, the web sites and
everything else so you can contact them as well and
find out what's available in your state.
Sandra
Block: There's another resource. Prevent Blindness
America has a program with vision service plans where
they provide an eye exam and a pair of glasses for children
in need as well as the Illinois or the American Optometric
Association has a Vision U.S.A. plan where one one day
a year children or even adults who qualify are provided
an eye exam at no charge through an optometrist's office.
So those are also some options.
Faye
Eldar: Okay. And can we talk now about what the
families need to know about services for children who
have vision impairments.
First of all, when they are in early intervention meaning
up to three years old, and then later on when they're
in the school system from ages three to 21.
Sandra Block: Well in order for a child to qualify
for any services, they have to have a full eye exam
and based on that eye exam, have been identified as
having some deficit. In general, children who get vision
services early on have to have some specific identified
at risk or or diagnosed vision problem. There are vision
itinerants who specialize in early intervention and
they'll have done their assessment identified from a
functional vision evaluation what the child's capabilities
and disabilities are and guide the parent through doing
some of the therapy in that age group.
Faye
Eldar: And if the child is under three years old,
do they need to get services from a teacher who has
special training for children with vision impairments
or can anybody who specializes in children up to three
years old serve this child affectively?
Sandra Block: Well I think there is some cross
training going on right now. Someone with someone who
is a vision itinerant with experience in early intervention
would have been the primary person I would have suggested.
But someone who has a vision background is primary is
really what you want for the zero to three group with
vision problems. And the reason is they have a good
understanding of what the visual system is and the advantage
of the early intervention background along with the
vision itinerant skills is they know what level the
child is capable of responding at. That's a that's a
very special age group.
Faye
Eldar: Do other professionals that children may
get services from like physical therapy, occupational
therapy and therapy, do they also get information about
working with children who have vision problems in their
training?
Sandra
Block: I would hope so but you know I think it's
on an individual basis. I don't know that their programs,
occupational therapy I know emphasizes vision because
they do a lot of work utilizing visual skills and integrating
them with other skills. But physical therapy I think
that the vision component of their education is probably
somewhat limited. As a matter of fact, oftentimes, they
may be the ones recommending that they include vision
when they are doing some of the work with the babies.
I think a lot has to do with the individual.
With
respect to a child who is three or older, then you're
starting to get into services that are usually school
based. Vision itinerants are usually the ones who acts
either as a consultant to the classroom teacher and
gives them some guidance depending on the child's level
of function, or they actually are providing direct services
for the child on a regular basis. A lot depends on what
the child's needs are. The nice thing is they are always
a resource for the classroom teacher. And that's what's
so important. When a child is identified as having a
significant visual impairment, there are lots of ways
of dealing with it, Some of them are as simple as spastical
correction you know glasses. There
are other things that children can use to help improve
their vision. One of them would be a computer program
that allows large print. Sometimes large print books
are used. Sometimes children with vision problems are
using books on tapes. There are also various aids that
a child can use to magnify. If a child has a loss of
field of vision, you know part of their vision is missing.
They can see, but pieces of it are missing when they
are looking at something. There are ways of teaching
them to use those those types of aids to augment or
improve what vision they have. And that's where the
vision itinerant comes in.
If a child needs a more sophisticated exam, there is
something called a low vision exam or some people refer
to it as vision rehab. Those are specialists who try
to find out whether their child could use telescopes
or microscopes or other special aids to improve the
quality of their vision. That's a specialist. That's
not a basic ophthalmologist. It's not a basic optometrist.
It's a usually an optometrist who specializes in treating
children with low vision.
Other
resources for kids are orientation and mobility. Children
who have limited vision by poor quality of vision or
their visual field meaning that they have a very limited
span of their vision. They don't either see from the
sides or you know there are some children whose bottom
half of their field is missing. They need orientation
and mobility specialists. And these are people oftentimes
who go to the schools or to various places where the
child would be at on a regular basis to get them to
be able to move around their environment successfully
with you know identifying hazards and teaching them
how to deal with them.
Oh my goodness. I think I've covered most of the specialists.
Faye
Eldar: Pam, what advice do you have for families
so they would be able to access these types of vision
services for their children either in early intervention
or in the school setting?
Pamela
Caldwell: Well, to request an evaluation because
oftentimes, in the school setting and in early intervention,
if we don't know our child needs these services, we
would say oh I don't I don't need that eval. So always
request the evals that allow you to get services, even
if you don't think you need it and check it out early.
I also wanted to get back to and maybe this isn't the
right time, to other ideas on how to get kids to wear
glasses, because having them wear them while their hands
are busy is only one option. And I know that's an issue
for a lot of us to get the kids to wear the glasses.
And one thing that's important is have them wear them
while it's motivating.
One
time when one classroom was trying to get Joey to wear
his glasses, they insisted he wear them while doing
desk work. Well that was fine. He didn't need them for
desk work. He's near sighted. He can see his desk work
just fine so he wasn't cooperative and they couldn't
figure out why. Well if they had him wear them for a
movie, he needed it to see the movie. Then that would
have been much more effective and then he would have
seen the benefit. Now when they'd have him do things
he doesn't like to do where he has to wear other orthotic
devices to computer time is very motivating for him
so they turn off the computer unless he wears his wrist
splint. That's motivating. So I think finding a motivating
activity and try to have them wear their glasses then
instead of just picking a random time.
Faye
Eldar: Well that's really important because children
can have lots of evaluations and lot of services lined
up, but if they don't have their glasses on, they're
not going to be able to participate fully and benefit
and oh I hear about this from many many parents.
Pamela
Caldwell: It's so frustrating when you know your
child would like to be able to see but he can't make
a connection between wearing glasses and getting those
benefits.
Sandra Block: One thing that parents should
be very aware of is that no medical professional can
talk to anybody unless the parent provides explicit
consent in writing. And I think it's a real important
issue to protect the children. but I am always happy
to share information with educators if the parent says
they'd like me to talk to the.
I
think that's really, you know, some communication so
everybody's on the same wavexlength is very important.
Because some of our kids have enough problems that can't
be corrected without not correcting and one that can.
Sandra
Block: Well,
I agree with knowing terminology being very important.
When we first when to a doctor who was going to evaluate
the boys, she was giving us all the medical jargon and
I said you know you really need to translate this. I
don't understand it. She said you know what? You're
going to be in the system for a long time. You've got
to learn to understand it. I'll translate it for you
but I'm not changing the terminology because you need
to learn it. And that was very good advice.
Faye Eldar: I've also found as a parent whose
child is a young adult and I'm teaching her to assume
more responsibility, she always asks like what's the
name of this machine that you're looking in my eye with?
What's the name of the medicine? I explained to her
I think when she was 12, we had to have a talk about
blind people couldn't drive. You have to be in tune
with knowing your child's abilities and your child's
understanding. Have them be a participant in what is
going on in a way that's appropriate and have the eye
professionals know that your child is not just there
to be held down, that there should be some cooperation
in understanding and learning the language. It is a
new language just like you know there's a new language
for special education and for health care. And these
are not things that we as parents have learned while
we were in school. We learned them on the job.
Sandra Block: And that is very true and I think
that goes you know that's something that I as a professional
I try to make sure that I use the right terms and that
I explain them and before that patient and that parent
leave, there is you know that that communication is
open. I'll be honest. The parent is important but not
nearly as important as the patient.
Faye Eldar:. We've been talking a lot about some
equipment and assistive technology for children with
visual impairments. Is that something that is usually
covered by the child's health insurance?
Sandra Block: In general it is not. Those kinds of resources
usually you have to go through some place else for coverage.
If you can't afford them out of pocket, oftentimes they
are not available through your insurance. School systems
do have some things available to be used in the classroom.
You know there are things that can be used. But telescopes
and hand-held magnification devices typoscopes which
are simple things to isolate a line at one point are
not available usually through your insurance coverage.
Now not to say that they shouldn't be because oftentimes
that's what augments the child's visual capability.
Pamela
Caldwell: And I'll just pop in here with if it's
needed for school and it's written on the i.e.p, the
school would have to provide it. And it doesn't necessarily
mean they could only use it at school. They might have
to take it home to do homework.
Sandra Block: It's almost as if the parents do
need to be advocates and know what rights they have
as parents and what the child is entitled to.
Faye
Eldar: And for our listeners to know, we will be
putting a lot of this information and links to organizations
dealing with visual impairments on our resource list.
In my experience as a parent, I have found that there
are many charitable organizations who help people who
are blind and who have low vision. It seems sometimes
like a greater percentage than for other types of disabilities.
And we will be having resources and links on our website
for our listeners. I think the place is to start with
the eye care professional with your optometrist and
ophthalmologist and with the child's teacher and therapist
that work with them and start there and say well you
know if you don't know of a resource, can you help me
find one? And most of the time that works.
Sandra
Block: There's a lot of people out there who are
willing to help and sometimes it's just asking the right
person. There are oftentimes people who know things
and unless they're asked may not share it. So parents
should talk to parents and educators and whoever else
they are dealing with because the resources that are
out there. It's just a matter of locating them.
Faye
Eldar: Well it's almost time for us to finish so
I would like to know from each of you some other important
information, advice for families or resources for families
of children with visual problems that you think everyone
should know about. Pam, could you share with us some
important advice for families?
Pamla
Caldwell: Well I'm going to echo what Sandy says
is to keep trying both in terms of finding an eye care
specialist that you're comfortable with and then finding
resources that will help your children because eventually
I don't know if what we're always looking for is out
there, but something's out there that will help. So
just keep trying and get the evals on a regular basis.
Sandra Block: Pam, I agree with you. In addition,
I think there are a lot of resources on the Internet
and spending a little time on there might also answer
a lot of questions. I think the idea of getting information
about your child's vision problems is really important.
Having a good understanding knowing what the prognosis
is, what could help them and what won't help them, talking
with other parents in chat rooms about children with
similar problems.I think those things are all very helpful
for parents cause if you have a child with special needs,
there are lots of different issues to address. And vision
is only one of them.
Faye Eldar: Well I want to thank you both very
much for sharing your expertise and your wisdom with
us. We've learned a lot today and I'm very grateful
that you were willing to participate in our show.
This
concludes today's webcast in the KMCO series on managed
care and children with special health care needs. Thank
you for logging on to our webcast production.
We're
very interested in your comments and questions regarding
our webcast and we invite you to contact us. You can
call us at area code 312-996-2233 or send us a fax at
312-413-0367 or send us an e-mail. You can reach me
at feldar@uic.edu.
We hope you've enjoyed the broadcast and you'll join
us for our upcoming broadcasts. They're scheduled for
the fourth Wednesday of each month at 1:30 p.m., central
standard time. Once we've aired a webcast for the first
time, it will be archived on our QCMC2 website and you
can access it at any time.
Our internet address is http://www.uic.edu/sph/cade/qcmc2.
It features the archives webcasts, extensive lists of
resources related to children with special health care
needs and managed care, links to opportunities for on-line
training and courses, information on our project staff
and activities, a featured website of the month and
much more.
We
have a number of webcasts that are coming up. In addition
to our show for sight, managed care and your child's
vision, our current show, we'll be having immunization
update following that and we have quite a few shows
that have been archived. They include the basics of
managed care, how to select a health plan for your family
and child with special health care needs, understanding,
accessing and appealing your health care benefits, health
care and the law, beyond insurance other resources for
accessing care, using the internet for health care and
insurance information, advocacy for your child with
special health care needs, and dentistry managed care
and your special needs child.
We have lots of resources--local, state and national
sources of information and assistance.
Our show is a product of the Quality Community Managed
Care: Phase Two project, which is funded by the Maternal
and Child Health Bureau (MCHB) of the Health Resources
and Services Administration (HRSA).
Thank
you very much for joining us.
End
of interview.
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