Event Started: 5/13/2010 2:47:06 PM ET
Please stand by for realtime captions.
Good afternoon. Is
anyone on the line?
Hi, this is Lisa Kosh.
audible. I am based at UPC of New York City.
Great. Anyone else
Olympians from Northern Kentucky.
And this is
Lori Brooks from the organ assisted technology program.
you question Mark?
Who also has joined us?
This is callings got from New York. I am sitting in for Lisa Razzano.
High. It is Liz Baloo.
Hi, how are you?
How is everyone this afternoon?
I am wishing I was outside.
Good afternoon 38 -- good
afternoon. Who has joined us question Mark?
It is Diana.
Hi, Diana. It is Lisa.
Sorry Ed didn't get a chance to meet
you at the conference.
I had seen you and I meant to make a
note to come find you and then I couldn't and then we got a little busy.
Hi, Diana. It is named C.
Hi, Nancy. How are you question Mark?
Okay. How is it going in
Good. We are getting heading -- getting ready to head
out to the NDRN conference in quite a few weeks.
We are going
to be participating quite a bit in that one.
That is on the
West Coast, isn't it question Mark?
It is in LA. I will
actually get a day off. I am going to be doing the due process Institute
on Monday, have no sessions on Tuesday, and then won on Wednesday and
one on Thursday. I am thinking I might play hooky on Tuesday and go
him that, so he knows.
All right. We will wait a few more
minutes before we get started. I am sure we will have some more people
The president is in our city right now
right as we speak.
That's right. What is he doing?
is visiting a company on our east side. A business, which is one of our
poorer areas. It is really cool that there is a business there, but I
guess he is going right from the airport to the business meeting
employees and then heading back out again.
To New York City. He
is doing a fundraiser. Hopefully, I will be out of the city before he
I thought he was doing a fundraiser here, but I don't
know how much time he is really getting to do that.
We will see what happens.
We will give it another minute. Did
someone just join us question Mark?
Yes, this is Amy from the
infant learning program in Alaska.
How is the
Well, it is about 50 in overcast.
much different than here in Buffalo -- not much different than here in
[ laughter ]
We are having more people join
Okay. It looks like we have just hit three clock. What I am
going to do is step away for a second so I can start the recording, and
then we will go ahead and get started.
cannot hear anything.
I think they are starting the recording.
Okay. As long as I am not the only one who is not hearing anything.
I am hearing you.
I hear you and that is all. Are we the only
No, I cannot hear.
Okay. Well, then we are all
on the same boat.
She said she might be right back -- she said
she would be right back.
Quickly, before we get started, I am going to ask, again, if everyone
could just say the name of their program before we get started. I will
start off. I am Lisa Kosh. I have [ indiscernible ] bower.
Diana from neighborhood legal services.
Lori Brooks from the
Oregon assisted technology program.
Brian Byrne with assisted
technology partners. We are part of the University of Colorado, Denver.
Colleen Scott from [ indiscernible ] sitting in for Lisa Razzano who
handles the. Program and [ indiscernible ] program.
This is Liz
Baloo. I am from the. Program in New York City.
This is Brian
Barr. I am with R. S. A. in Washington DC.
indiscernible ] in Northern Kentucky.
Okay. Anybody else?
[ inaudible ] from the infant learning program in Alaska.
This is [ indiscernible ] from the [ indiscernible ] program
in Boston, Massachusetts.
Megan with the infant learning program in Alaska.
[ inaudible ] assistance program.
Anyone else? Great. Well,
good afternoon, everyone. Thank you for joining us today. I am going to
introduce our speaker. We have Diana Strobe, a staff attorney. She is
going to share information regarding the special requirements of the
Medicaid ESPDT and how it can be used to meet unique AT related needs
for children under the age of 81. Diana, I am going to hand it over to
Okay. Great. Thanks. Just a little bit about me and
neighborhood legal services. I have been here for about 21 years. I did
family for about 15. Then I switched into the assistive technology into
the program and I found my niche. I feel like I went to heaven. I just
love what I am doing. I where two hats here. I do casework, a lot of
casework, but I also wear the national hat. We provide technical
assistance to the protection and advocacy for a twisted technology
program across the country ended in the territories. We get to see a lot
of different cases, help people with various issues. Most of my
casework, when I am doing case work, really involves Medicaid. For us,
those are the cases that come into our offices. I am sure people are
having problems with a whole slew of other issues, but we are not seeing
those. We are just seeing a lot of Medicaid. Right now it is becoming
Medicaid and managed care, I think. That is really kind of inundating
our office. I am going to try to remember to break every few minutes to
give people an opportunity to ask questions or make comments as we go
along into kind of break this up, because you are going to get very
tired of hearing my voice for the next little while.
This is part
of the training that Ron and I have been doing for several different
venues. He is quite the special education guru. He is at national
disability rights network. He is really kind of -- he has really kind of
staked out his territory in the special education realm. I talk about
ESPDT and it using ESPDT to get the assistive technology for children
under the Medicaid program. He talks about the idea component. I am not
prepared to talk about that, so this is only going to be part of that
training except to say that, basically, the two programs are very
similar in their outlook. What they are trying to accomplish for the
population they serve, children with disabilities. So, a lot of the
equipment that might be available or the potential for getting under the
ESPDT is probably just as likely to be available under some of the idea
programs, especially for like infant children. Again, if you have
questions about special education, they should probably be directed to
Ron Hager. A little background on Medicaid. Any kind of questions and
comments? Okay. A little background on Medicaid. It was passed by the
federal government somewhere around 1965. There is a statement of
purpose. The reason why Medicaid was enacted is to enable each state to
furnish medical assistance on behalf of families and blind or disabled
individuals who have insufficient resources to meet medical needs and to
furnish rehabilitation and other services to help such families and
individuals attain or retained capability for independence and
self-care. That is an incredible statement of purpose, statement of
Think about obtaining or retaining capability for independence
and self-care. All of the equipment that might make that possible for a
person with disabilities. This is a very powerful statement. We often
use it in litigation and hearings to justify our requests for specific
pieces of information or for equipment such as standing wheelchairs or
seat elevators, et cetera, et cetera. Medicaid is a joint federal state
venture. That means that the federal government contributes toward the
cost to provide services. The amount of the federal contribution is
going to vary state-by-state. The federal government is more generous
with certain states event with others, but in every case, there is a
federal contribution. The state is not picking up Medicaid costs all on
their own, although I think a lot of them dry publicly and make
everybody think they are. States need not participate in the Medicaid
program, but if they do, they must comply with all federal statutory and
regulatory provisions. In some cases, federal law paints with kind of a
broad brush. For example, there is no definition of durable medical
equipment in the federal law or federal regulations. Every state comes
up with its own definition of durable medical equipment. The same is
true for medical necessity.
Does anyone else hear that?
I just wanted to make sure it wasn't just me.
wasn't just you.
Just remind everyone, it is star six to mute.
2 I knew it, it is pound six.
Thank you. The same is true for
medical necessity. It says in the federal act that states can restrict
durable medical equipment and medical services to those which are
medically necessary, but the federal act doesn't define what medical
necessity is. Every state is free to define medical necessity its own
way. We are going to take it in a little bit. We will look at the New
York did have -- definition of DME. You have some basis for knowing, you
know, what it might look like. In fact, if you have got a handout,
screen two, slide to -- this is the New York definition. It covers DME
that can withstand repeated use. Primarily a customarily used for
medical purposes. Generally not useful in the absence of an illness or
injury. And is usually not fitted for particular individual use. But it
can be custom-made or custom molded. Now, this is very similar. New York
has a definition of durable medical equipment that is very similar to
the federal definition in the Medicare act, but you have to be very
careful because Medicare and Medicaid are not the same programs. A lot
of states have adopted the Medicare definition of durable medical
equipment which says that it has to be used in the home but they don't
have to in New York. We have opted not to, so we don't have a problem in
New York, for example, getting wheelchairs that are needed only for the
use outside the home. Where some states may have a problem. Equipment,
slide three, may also be covered under other medical service categories.
For example, physical therapy under the federal act includes any
necessary supplies and equipment. If you have a piece of equipment that
is necessary as an adjunct, so to speak, for physical therapy, if your
state covers physical therapy, then the equipment would also be
comfortable under the Medicaid program. Same with occupational therapy,
speech graphology services, rehabilitation, prosthetics, et cetera.
Assistive technology may be more than just durable medical equipment. It
could also fit into some of these other medical services categories.
Scream for I will show you in New York's definition of medical
necessity. If it is necessary to prevent a condition not to size --
causes acute suffering and result in illness or [ indiscernible ] or
threatens to cause a significant handicap, then it is not -- medically
necessary. The one that I really like a lot because I think it can be so
broadly used is interfere with the capacity for normal activity. We
often argue that for a piece of equipment that it helps someone
function. It maximizes their capacity for normal activities such as a
seat elevator and wheelchair.
If the person then can use the seed
elevator to access cupboards, make themselves something to eat because
now maybe they can raise themselves up and see what is cooking on the
stove or get their dishes, it helps their capacity for normal activity.
Then it should be comparable under the Medicaid program. So, that is
kind of a rough background, really quick background, to the Medicaid
program. Are there any comments or questions? Okay. In 1967 just a few
years after the Medicaid act was passed, Congress noticed that children
going to low income parents, especially in the poverty level, really had
a lot of medical needs. They decided that they wanted to encourage
states to provide comprehensive and preventative healthcare for Medicaid
recipients under the age of 21 under the theory that if you caught the
problem early and you addressed it adequately or appropriately that it
would really be less of an obstacle, less of handicap later in life,
and then less of draw on the resources -- the public resources. It
always goes back to public resources for the government area but that
was the theory behind the ESPDT. Unfortunately, the 1967 version was not
very effective. In 1989 Congress strengthened it. What they did is they
in essence ESPDT became a mandatory program, a medical service just
like prosthetics is a medical services and physical therapy is a medical
service, healthcare is a medical service, so ESPDT is a medical service
in the federal Medicaid act. I can, it is designed to be a
comprehensive and preventative health care program for Medicaid
recipients under 21. It is to provide, as the title suggests, early and
periodic screening. That means, get in early and get often. Then they
can be diagnosed to ascertain whether there are physical or mental
defects. Defect is the word they use in the statute. That wasn't my
word. We kind of find it a little offensive, but that is what is in the
Now, once they diagnose or ascertain that there are physical
or mental defects, then they are required to provide such healthcare,
treatment, or other measures to correct or familiar rate does defects in
chronic decision. The word ameliorate means to make better or improve.
If they have a treatment or care or other measure that could improve
that defect, physical or mental, that was discovered by the screen, then
they are supposed to provide that. Courts have said that it broadens
the definition of medical necessity. In our program, we like to say
ESPDT is Medicaid on steroids. Remember, in screen for we talked about
medical necessity, which was to prevent diagnosed in correct a condition
in New York that did a number of things. This even goes beyond. If they
find any defect in physical or mental health or condition, then they
are mandated to provide such healthcare or treatment or other measures
that will correct or ameliorate those defects are chronic conditions.
This is just a wonderful, wonderful act. Slide six, this just kind of
breaks, title so that you can see what is mandated on every state that
participates in the ESPDT. In other words, they are supposed to reach
out to the community of eligible Medicaid recipients, the parents, and
let them know about the early and periodic screenings. Well, what are
those? To some degree, they are the wellness visits that the kids go to.
But they are more than that. We will get into that in a few minutes.
Then they are supposed to advise them about the screening, diagnosis,
the treatment. They are supposed to make sure that there is adequate
provider participation so that the child can receive such care or
treatment as they require. Then the states are supposed to report back
to the federal government so that the federal government can monitor
their compliance with this. So, take another short little break. Any
I have a question. You have been talking a
lot about -- and saying that in New York, this is what it is. Does each
state specify how they are utilizing ESPDT, or is that federal?
Well, it is up to the states. Let you -- let me tell you my experience
with New York. If you mention ESPDT to anyone, they think if they did
the examination at age two and issued the immunizations that they have
done their jobs. They wipe their hands and they say, we are compliant.
If we go to them and say, under ESPDT, you really should be providing
this motorized wheelchair to this four -year-old so they can maximize
his capacity of self-care. We are going to get into what they should be
assessing in a few minutes. This is really exciting. So, New York is
terrible on the issue of ESPDT. We take a case at a time and challenge
them. Often we win at a fair hearing, so I haven't had to litigate the
issue and try to make kind of state policy on it, but every state
approaches their obligation to ESPDT differently. My understanding is in
some states they may actually have -- you may actually submit through a
ESPDT process, but I couldn't tell you which states those are. That is
wonderful. I wish New York would kind of recognize ESPDT that way. So, I
don't know if I answered your question, but it is very vague. Every
state is going to kind of run their own. I don't know what the federal
government is doing right now with the reporting aspect of it. At what
point do they -- based on the reporting, do they think the states are in
compliance with this? I don't know that. So, probably I didn't answer
your question --
That is very helpful. Thank you.
Okay. And let me just say, it is not in the slides, but under the
federal Medicaid act -- this is one of the other powerful things that
the ESPDT did. Under the federal act, there are certain medical services
that are mandatory for everybody. For example, inpatient hospital,
outpatient physician -- I. am trying to think of some of the other
mandatory -- nursing care facilities. There is about a half a dozen
mandatory services. Every state must provide them. There are optional
categories a state could provide that doesn't help too. Physical
therapy, occupational therapy, prescription dugs, dental. Those are all
optional. I am fortunate I live in a state that provides them all, but
that is not true for every state. You may or may not live in a state
that provides Medicaid recipients with physical therapy. What ESPDT did
is made all the optional service categories mandatory for Medicaid
recipients under the age of 21. That is also significant, because it
means that if you live in a state that doesn't pay for physical therapy
services for adults, it doesn't matter. They must pay for physical
therapy services for children. Remember, physical therapy services also
include any necessary equipment and supplies.
So, that, again, is one of the
very, very powerful elements of ESPDT because all of the Medicaid
service categories are available to every Medicaid recipient under the
age of 21 across the United States. It doesn't matter what state they
I have a question. The language says to a ameliorate.
When it comes to therapy services, do they differentiate between that in
They shouldn't. But I know the issue now about
rehabilitation versus habilitation, which I think is very bizarre.
Again, what is the purpose of Medicaid for all? It is how to obtain or
retain -- a cane or retain capability for independence and self-care.
Think about a wheelchair. You know, a wheelchair is not going to help
anybody walk. Yet every program that I am aware of covers most
wheelchair is. -- wheelchairs. Some states might have a problem with
the more expensive stuff if you have like wild terrain and you like to
go nature walking with a wheelchair. Some states may paying for those,
but nobody ever comes back and says, no, we won't. All it does is help
you maintain. That whole issue of -- actually, the whole issue of
habilitation versus rehabilitation may be resolved in the healthcare
reform act that got past. I am still waiting to be taught on that
though. [ laughter ] I really cannot address that. My hope is that that
whole issue of, do we have to cover it if it is habilitation versus
rehabilitation, hopefully, that will be resolved. Okay. Flights have
been. There is -- if you go on the CMS website, and this is the Center
for Medicare and Medicaid services. They are the federal agencies that
oversees both programs. Don't let the fact that the same federal agency
oversee both programs convince you that they are the same program,
because they are not. Medicaid agencies may want you to convince -- may
want to convince you that they are the same programs, but they like what
Medicare does in excluding certain categories, but they are not the
same thing. It is the same federal agency that oversees them. On the CMS
website, they have some manuals and state Medicaid manuals. They are
like federal policy. This is what we expect states to be complying with
under the service category. Chaper 5 is the ESPDT State Medicaid manual.
It is a wonderful, wonderful manual because -- well, let's get into
slide seven. I think you'll see that I am not aware of any Medicaid
agency complying with this. We are really talking about possibilities
here and not what is happening but what should be happening and the
various states. The State Medicaid manual federal policy says that ESPDT
screenings, and they are going to call them assessments in the State
Medicaid manual, must include an assessment of gross and fine motor
development. This is supposed to be looking to see, do people use their
fingers? Can they use their hands? What about their communication skills
and language development? Children are supposed to be assessed on their
communication skills or language development. They are supposed to be a
sesame self-help or self skills. They are supposed to be a assessed on
the social emotional development and their ability to engage in social
interaction, their cognitive skills, focusing on problem solving or
reasoning. In a little bit I will tell you about a case I did for a
young boy who needed a power wheelchair. The State Medicaid agency did
not want to provide him one even though he had been using one
successfully in school on his own.
Medicaid said, he is too young to
be left alone. He can be pushed in a manual. He doesn't need a power.
But that flies in the face of their responsibility to assess for
cognitive skills. Is this child going to develop his cognitive skills
with maximum capacity if he can't push himself through a doorway? If you
can't align himself -- I mean, until people learn to move themselves
through space, they are not going to really have as well-defined an idea
of where they end in the world begins. Their cognitive skills will
suffer. Also, their ability to kind of move around the room and get
their own glass of water, go get their own coloring book, go get help
on something, go find mommy. I mean, all of those things they cannot
develop if you put them in a chair and they have to wait to be pushed.
So, again, obviously New York State Medicaid was not complying with this
direction to assess for these things, because what the ESPDT say if you
find a defect through this assessment? Then you are but -- you are
required to provide such care or treatment necessary to correct or
ameliorate that defect or condition. Slide eight. Again, this is all
from the State Medicaid manual. So, they are all federal policy.
Remember, if the state doesn't have to participate in Medicaid but they
do, they must comply with the federal law and regulations. This is CMS
deciding in interpreting the federal law. As children age, assessments
should include visual motor integration, visual spatial organization,
visual sequencing processing skills, auditory sequential memory. All of
these things really look like special education issues, but they are,
according to the federal government, medical needs that should be a fast
for Medicaid recipients under the age of 21. If a defect is found, for
example, in visual and spatial organization and if there is a health
care or treatment out there that will correct or ameliorate, then the
Medicaid program should be paying for those things. For example,
computer programs. I am sure there are probably computer programs out
there that would help aid in visual spatial organization. I know that we
would have to fight in order to get them -- we would probably have to
appeal to get them to pay for computer programs because they would think
that that was within the responsibility of the special education
Slide nine. Assessment of adolescents should include potential
learning disabilities, peer relations, psychological psychiatric
problems, and vocational skills. Under the ESPDT, we are now looking at
vocational skills as a medical need. So, when I have talked about how
ESPDT broadens the definition of medical necessity, I don't think we
would ever be able to even argue that for an adult who should be
assessing vocational skills and is discovering a defect, treat it under
the Medicaid program. But that is what Medicaid programs should be --
that is why they should be responsible under ESPDT. Having said all of
this, and in a few more slides I am going to get into some of the
hearings I did because I think they are really important -- I need to
point out that I am not aware of any state agency doing this, that is
really approving items that would be necessary for visual motor
integration. I know the times I've argued, for example, that someone
needs a standing wheelchair so he can move down the hallway between
classes in a standing position and oddball his fellow students, thereby,
raising his self-esteem, thereby, improving his ability to engage in
social interaction in helping his social emotional development. I really
have to fight for these issues in New York because our State Medicaid
agency does not recognize this. We have been doing -- this is the reason
why we have been doing these trainings all over is to encourage people
to think in these terms when they are dealing with Medicaid recipients
under the age of 21. If there is a piece of equipment that meets the
state definition of durable medical equipment and if it complies with
these assessment criteria that is laid out in the State Medicaid
Director letter -- and there is more. There is so much more that is not
on the slides as to what they should be looking for in the early and
periodic screening assessments. Equipment should be requested under the
state Medicaid program and it is denied and appealed. That is how we are
going to move the Medicaid agencies across the countries toward
compliance with these federal mandates. That is the only way that I see,
unless you have a really good Medicaid agency that you can work with
and get them to move through negotiating.
We don't happen to have that in
New York. At least we don't have that kind of relationship with our
state Medicaid agency. But I know I was dealing with one attorney in a
state out west who was having a lot of success moving her state to a
better definition of medical necessity, one that was better for people
with disabilities. So, that is not going to be universally -- universal.
Every state is going to kind of stand on its own as far as what is
willing to do without an actual appeal or litigation. Does anybody have
[ overlapping speakers ]
I was just going to
say, I have a question. I didn't realize you are about to ask that. I'm
sorry. This is the eight. How are you?
just have a question about the vocational skills portion of it. There is
a lot of problems, especially, a New York High School students moving
on to the college or adult facets. A lot of the needs are not being met.
There have needs that relate to vocational skills that are not being
met. Would this be a potential source for resolving those issues
Yes, but there is even more. The VR and the
special education should all be working. The mandate is there that they
should all be working together.
That doesn't really happen.
I know, I know.
That's a problem.
The only thing I
can suggest is referring them to call us.
We do that a lot. You
probably get flooded with my calls. But thank you.
[ laughter ]
We just did a big training in Rochester and we are starting to
get a lot more calls now. I'm not sure I should really say call us for
everything because Marge would shoot me.
[ laughter ]
Is just the two of us. Even if we cannot help work on the individual
case, we might be able to give you sites and some guidance. But, yes, it
is going to be a fight to get them to do this. It is going to take an
appeal probably to get them to recognize that vocational skills are part
of the Medicaid assessment. Again, we have problems going back to the
standing wheelchair. We have to appeal those. Even though we have -- we
have also got the physical benefits of passive standing on our side. I
mean, we never go in just to say, give us this $37,000 wheelchair so
this young man can change classes in its standing position and so we can
talk in a corner on Friday night with his peers. Although, that is one
of the things and benefits that a standing wheelchair can give. We
always have the physical benefits of standing as well, but still. We
fight to try to get these recognized in New York during our fair
hearings. [ indiscernible ] is like slide 10. We had a fair hearing.
Let's slip over to slide 11. Slide 11 was a young boy. I think when the
case had started, you may have just been starting to turn four. What
happened was another advocate good a fair hearing. He was denied for the
motorized wheelchair. The young man had been using a motorized
wheelchair in school for like a year at this point successfully. They
lost the fair hearing. They handed it off to me for a state court
appeal. I asked for a copy of the record. The Medicaid agency could not
find a copy of the transcript, so they had to give me a new fair
hearing. I went in and I looked at the record of the old fair hearing
and compared it to the decision. I kind of, you know, tweaked the fair
hearing somewhat. So, I addressed some of the concerns that have been
raised and I won the fair hearing. What the decision said was it
rejected the agency's argument. The decision rejected the agency's
argument and said that continued reliance on caregivers to push the
child would be developmentally inappropriate for him.
absolutely the correct decision for them to make. Even if there was
somebody there to push him all the time, he needed to be given the
opportunity to develop his self-help and self-care skills by moving
himself through space. He needed the ability to develop his cognitive
skills by being able to move himself through space, through doorways,
past objects. It was just an incredible decision for us. Did it mention
ESPDT? I don't think it mentions ESPDT, but we didn't care because it
still recognized those assessment elements and criteria in the decision.
There was another case back in slide 10 where we had a young man who
was quadriplegic. When he was a very young child, he had run in the
middle of a street to chase a ball and got hit by a car. The Christopher
Reeves have eight C-3 fracture? I think it was the same fracture that
he had. This young man could not even move his head from side to side.
He had no neck control. We could not get him a power wheelchair with [
indiscernible ]. There is a mechanism that you can use by drawing air in
and blowing air out. It was recommended for him. He was already using
this kind of mechanism for his computer to do homework. Somebody out in
California had taken this mechanism and had kind of made a complex
version so the kid could play PlayStation games on his computer. He was
kicking everyone's butt so-to-speak. He was really getting good at using
his thumb to work his computer. Everybody was confident that with some
training he would be able to use this mechanism. The agency did not want
to buy power wheelchair with this.
They said, he is on a respirator
all the time. He has to be monitored. The monitor can push him. The fair
hearing we did was wonderful. All of his health care providers came in
to testify, including his child psychologist. She said, she -- she
analogized it to being a passenger in a car. She said, if you are a
passenger in a car and you go someplace, you may go the same place every
week, but you never pay attention to the root. When it is time for you
to drive that route, you don't know where you have gone because you were
not paying attention. You are a passenger. That is what you are doing
to this child if he don't give them the capability for self mobility. He
will forever be a passenger in the car of life and will never know his
way. If you want him to develop to his awesome on, we have to give him
this mechanism and give him the potential, the ability, to move himself
around the room. We have the technology. It would be one thing if we
didn't have the technology for this, but we do. We won that fair
hearing. It was noted that the chair was necessary to maximize a child's
opportunity for cognitive development, allow him to be more responsible
for his own self-care and safety. That way if anything happened to his
caregiver and the building was on fire, he would be able to,
theoretically, move himself out of the building or out of harms way. It
would foster his learning capacity. It would foster his general ability
to explore his environment as is necessary for any child his age.
argued ESPDT -- I am not sure that ESPDT was even mentioned in the
decision, but we were thrilled because even without that it did
recognize these assessment criteria that are in a state Medicaid manual.
Again, what would have happened if we hadn't pushed the envelope they
are? If we had said, okay, they are right and not in the prior approval
and not done the appeal, this child would never have gotten his power
wheelchair with this mechanism.
How long does a case like that
A while. Actually, they didn't come to see us until they
made a third file -- prior approval requests. They did fair hearings on
their own. When they did the third prior approval and were denied, then
they came to see us and we did the third fair hearing and we got it. In
the case of John, Little John -- I think this case study was when he was
under four. We didn't get it until he was five, so it took about a year
or longer to get this chair for John. How long will it take if you
don't try? You know, forever, because they will never get it. I don't
know how to -- of course, the problem is trying to expedite these
things. Unfortunately, Marge and I have not learned the secret of
expediting the fair hearings are you despite our efforts to the
contrary, these things kind of take their own sweet time. Ultimately, we
were able to get these young men and the equipment they needed and
later is better than not at all. So -- as they make absolutely. I just
wondered a timeframe. Like a year is a lot different than five years. I
just wondered what it was.
If we would've had to gone to court,
it might have taken us longer. Thankfully, we were able to resolve both
of these issues at the fair hearing level. They were pulled -- again,
the sip and puff was probably less than a year than the -- ultimately,
the whole thing took about two or three years because of the prior
attempts. He was about eight I think when we finally got him the sip and
puff. The first time that a move himself through space. We also got a
young man, very similar, except his was CP. He was quadriplegic. He did
have some neck control. We did a fair hearing for him on a header Ray,
and we won that one. That one took a while. But we won it, everyone at
head -- we won it at fair healing. In New York if we lose fair hearings,
most states you can appeal in court. I can tell you that in all of my
cases, I have been able to resolve my court proceedings. If I am
appealing, I have been able to resolve them all without actually getting
a court decision. I have been able to resolve them by settlement.
Again, that still adds four, five, six months onto the process. Any
other questions? Think about it. Think about equipment that you think
Medicaid has not been covering but would fit within the parameters of
Again, I am thinking of computer software, certain kinds of computer
software. You know, how many may be toys or rehabilitative adaptive
toys. We are having a problem right now with the state Medicaid agency
on therapeutic trikes. They do not want to pay for therapeutic trikes.
They say, they are exercise equipment. We have been fighting them, some
more successfully than others. We have gotten a few therapeutic trikes
paid for through the Medicaid program because of the benefits that we
have been able to outline. Even under the regular Medicaid program, I
think -- even even if you took ESPDT out of it, therapeutic trikes would
be covered by the Medicaid program. So, if you look at slide 12, there
is a CMS letter that is circulating out there. It is not in very good
condition. We have a copy if anyone is ever interested in seeing it.
Basically, it says it outlines a bunch of equipment for health care
financing administration. They changed their name to CMS. They wrote a
letter outlining some equipment they thought was comfortable under the
Medicaid program is medically necessary for children under the age of
21. According to them, computers such as Apple II computers with
printers and computer software, exercise equipment including exercise
bikes, swing sets, and tricycles. The two successful therapeutic trays
-- tricycles I had I submitted the letter saying that these are cover of
all under state Medicaid programs is medically necessary. Communication
devices such as Dynavox. I think this is less than an issue now. We are
not seeing as many speech generating device cases as we were for a
Maybe this issue has been temporarily resolved or maybe people just
aren't asking for things because they think they are not comparable.
That is another problem. Specialized eating utensils and other daily
living aids. One time we asked for a seating chair. The child had a
wheelchair and use that for most things but the wheelchair would not let
a child get into the table with the family to eat. She was kind of
segregated. Because they were trying to teach herself feeding skills --
she was face -- she was basically fed through a tube, but they were
trying to get her to eat. It was important that she be with the family,
close to the table, so that she could smell the foods and it would
stimulate her appetite and the social myths of being with her family. I
thought it was a really good justification. We lost that fair hearing
because they said it was duplicated. She didn't need it. She could sit
in a wheelchair and eat. I wanted to appeal it, but we were able to get
it paid through a Medicaid waiver program, so we didn't appeal it. That
is a different issue. I think a lot of things that are being paid for
right now with the waiver program probably shouldn't be. They should
probably be paid for under the state Medicaid program as ESPDT, but if
you can get the equipment and they can get fast versus doing a lengthy
appeal, then you have to go with getting it fast even if it kind of
sticks to you that it is not being handled properly. You just kind of
bite that and say that at least my client has the equipment he or she
needs. Again, this training is about potential. It is the hope that
people who work with this community of Medicaid recipients under the age
of 21 will start thinking and expanded -- start thinking in expanded
terms as to what Medicaid should be paying for and then putting in those
requests. Medicaid recipients all over the country have the right to
appeal denials, but there aren't no denials if there are no requests. If
people don't say, by the way, why aren't you getting a standing
wheelchair? I think a standing wheelchair would really help develop your
cognitive skills. You know, you could get yourself into a standing
wheelchair and work at the science counter. In one of my cases, the
child was able to urinate by themselves from a standing position without
help. What a tremendous self-care that is to be able to do that
function on your own without needing anyone's help. Talk about human
dignity. But just expanding the possibilities so that people can request
things that are really going to improve their quality of life, their
function, their options for future development. Denials can be appealed.
That is where a lot of these things will actually be one is on appeals.
State and Medicaid agencies will probably be resistant at first to any
new equipment. That is kind of human nature. I think that is the nature
of agencies. They get that first request for the standing wheelchair and
they say, no, we don't pay for these things. But it only over the
course of the time.
When enough of them get appealed and are
one, we were able to push through. At one time, we couldn't get scooters
paid for. Now they routinely do. A bunch of other equipment that
one-time Medicaid agencies said, we don't pay for those. I am thinking
of specialty beds made by hard manufacturing. Medicaid would not pay for
them without a fair hearing. Eventually, we won so many fair hearings
that they gave up and just started developing policy and criteria for
when they will pay for these kinds of beds. Does anybody have any
questions? IM, basically, done. And it is an hour.
overlapping speakers ]
I have one question.
What has your experience being with environmental controls question
We have won them.
Really question marks the Mac
not en masse, because, again, not a lot of people are asking for them.
There is the conception that Medicaid doesn't pay for them. We have not
won a lot, but we have one them. I have a fair hearing decisions that I
can come if you email me, they are all on electronic format. They are
already redacted. All I have to do is go into my folder and find the one
under environmental control units, attach it, and get it to you. Yes,
we do have one.
What is your email address?
I had a question about the computers. I know
you had talked about them in the past. Apple II is no longer a computer.
What does this include laptops when you're
It can. It depends, again, on what is needed
for. Again, another are some state Medicaid agencies out there that are
computer-based like speech generating devices. They are paid for without
a problem. That is not true in a dork. I think they are still denying
any computer-based speech generating devices. People aren't even asking
for them. Again, that is why we do these trainings, hoping, that people
will start asking for them so we can appeal denials. But if there is one
of these criteria or one of the other assessment criteria not undies
and in the state Medicaid manual, if you thought that that computer or
computer program would meet those needs and you can justify it, write
him what her of medical justification or have the therapist sign off and
write a very convincing letter, find a vendor willing to step out who
will submit it, and then appeal.
Even the iPod
touch, I think Prolog is a vendor or something. Again, they are using
them for communication symbols.
I heard it is a fraction of the
We have been getting a lot of calls. That is so new,
nobody is trading that in.
But I heard it is a fraction of the
I am never going to get used to speech
generating devices. They are going to be [ indiscernible ] forever to
me. That doesn't make sense to me. If you look under the regular durable
medical equipment definition, you might have a hard time in New York
because iPods are not customarily and primarily used for medical
purposes or generally not usable in the absence of of [ indiscernible ].
But under speech pathology services, does your state covers speech
pathology services? They should for Medicaid recipients under the age of
21. Those include all necessary supplies and equipment so you could
make the argument that even if it doesn't need your state definition of
durable medical equipment, it is comfortable. Speech is -- a.
We are getting a lot of requests for that.
There is an apt on
there that is really good for individuals with autism. I think that is
why there is such a.
Interest in that.
I am sure there
is other medical applications that will be designed that will be
effective for people as well. So, there is a lot of possibility with
We would love to see a case like that come into our
office, but we haven't. We would take it on. If we had a case that came
in, we would say, I think we can do something for you.
one that calls me I am sending your way, Diana.
Marge I said that. She would shoot me.
It will be our secret.
[ laughter ]
I wanted to share about the iPod touch and [
indiscernible ]. I am calling from -- I am calling from South Carolina,
so this is, of course, how South Carolina Medicaid thinks about it. It
is not a dedicated device. Medicaid here is looking for dedicated
communication devices, because the iPod touch, when you purchase them,
they have WiFi capabilities.
Unless your definition of durable
medical equipment specifically says that it doesn't cover equipment with
wi-fi capability, if it means the definition of durable medical
equipment or speech pathology services, supplies and equipment, then I
think that is a red herring. We have -- I think Medicaid state agencies
will do thing for beds. There is one kind of bad that they won't cover
because they say it is not FDA registered. That is the red herring.
There is nothing in our definition that requires FDA registration. If
they are putting blocks to cover it that don't exist, if they are
setting up these false criteria that don't exist in your state law, then
I think that it should be challenged.
Well, they do ask for
dedicated communication devices. The vendors even sell a key, which is
no more than a code that people can put into their devices after it is
provided to them through Medicaid funding so that they do have access to
the Internet and WiFi capability and all those things.
the dedicated thing is a red herring. We had a case in number of years
ago where we lost the fair hearing. I can't remember. What was the name
of it? Palmtop. It was computer-based. We left the fair hearing and we
did the article 78. Our argument was, there is nothing in our
regulations that allow Medicaid to make that kind of discrimination and
determination based on whether or not it was computer-based or whether
or not it was dedicated. And they gave him the device.
We didn't get a court order -- get a court order of it because they did
part of it as the settlement. So, we don't have a court order out there
that says Medicaid can't look at that as a criteria because it is not
one of the regulations. I mean, your state should have it all set out
what they can and can't do. Sometimes they develop policy that may be
more restrictive than your state statute and regulations. When they do,
it is tangible.
Good information. Thank you.
I have a
I am from Boston. I have a twofold
question. The first one is about what you just said. If you are
entering into the settlements, are you making an effort to ensure that
the settlements would have some future bearing on decisions, rather than
-- in other words, by coming to a settlement, you are preventing the
case from going to court.
Which would have
resulted in order which is a force of law. It is almost like you are
shortcutting the process.
But it is getting the
person what they need, which is the primary goal.
to you is, settlement as of right [ indiscernible ]. You make an effort
to make sure that something is in there that would, hopefully, allow the
next person to point to the settlement. We got you to agree on this.
Therefore, [ indiscernible ].
And my cases, I don't think the
settlement would have broken down. I would not have been able to get the
commitment. As much as I would like to make impact law, I cannot do
that enter the individual client because of my ethical -- as a lawyer,
my first priority is the person sitting there.
can put -- I cannot put my own or some future plaintiffs before that
particular client. It would not have worked. They were not willing to
make concessions. They wanted him to go away, and they were willing to
provide the equipment. They didn't want a court order out there. Maybe
we wouldn't have won. We like to think we would've won, but when you
take it to a court, who knows what the judge -- if you are watching what
happens now at the court levels, some really bizarre stuff is happening
that is really terrible. As far as people rights and access to certain
things. I have been practicing law for like 22 years. I am very well
aware of the fact that no matter how strong you think your cases, when
you take it to a judge, is the flip of a coin sometimes. I cannot do
that ethically if it is going to possibly keep -- and I could get the
product for my client and now I can't because of it. No, I didn't
because I thought my first responsibility was the client.
second part -- well, my second question is about training to get people
the skills to be able to appeal the decisions. A lot of times when I
talk to people, they are very frustrated and they give up instead of
appealing. People need help. My question is, do you have resources that
people tend -- that people can make themselves available to do that
There is an office in every state. One of the
things that we try to do in our state. We did a training about a month
ago in Rochester, which is in the western part of New York State. It was
geared toward physical therapist, occupational therapist, there is --
service Corps Nader is, people on the special education teams,
vocational rehab people, anybody that would be -- and we tried to make a
also available to our client base. But they are hard to reach. We are
finding it hard to reach them but through their service providers like
their therapists. We distributed this to everyone we could think of. We
had a nice attendants. We had 120 people show up. This is what we taught
them. This was one of the sessions that we taught there. In addition to
what I taught and Ron Hager thought -- taught. We talked about the
process, talk about what to appeal. The whole idea was so people who are
servicing our community days no one is available so that they can help
these people through the process. To the degree that there are other
programs out there, I think many of them are doing likewise. They are
trying to get -- you know, they are involved in community education,
trying to reach out to either the end-user or people who service the
community. In an effort to get them to understand their rights. We have a
wonderful website that we get a lot of hits on. It is an LS .org. That
is our home page. We have a link there for the national assistive
technology project. We have a link there to the state assisted
technology projects. There is all kinds of articles on there. Of course,
one of the articles I wrote, and I think it is in a state, is called
consumer empowerment. The state ones are geared toward nonlegal
personnel. Very few sites. It just kind of tells people what their
rights are. That is due to New York. But a lot of what is said in New
York is federally mandated. I mean, none of the notice requirements are
federal. The right to appeal is based in federal law. Yes, we try to get
the word out as much as possible as to what to let people know because
knowledge is power.
Thank you very much.
I have a
This is Mario from New Mexico.
My question is, I know that you may work with ESPDT,
but as an adult on Medicaid, can we use the same reasoning and firepower
that ESPDT brings to the table in a fair hearing? Or what would adults
be able to use in a fair hearing?
I think in a fair hearing, it
is really important -- and I do a lot of ESPDT work, but I do a lot of
Medicaid for adults as well. I can make a lot of the same arguments for
the adults that I can make for children. I may present the argument a
little bit differently. At like, you know, self-esteem may be a real
issue when it comes to somebody handling the pressure and -- and when
depression. Medicaid should be looking at mental health as well as
physical health. You can frame it, but it is really important to know
what your states definition is. If you are dealing with Medicaid at all,
you should know what your state definition is a durable medical
equipment and know your state definition of medical necessity so that
you can gear your arguments. For example, New York has that wonderful
vision in there that says, you know, it is medically necessary if it
prevents or cures a condition that is [ indiscernible ] for normal
activity. I can think of a lot of pieces of equipment that would help a
person whose capacity for normal activity is being affected.
And if you look at some of those ESPDT assessments, how
many of those could you fit into that interferes with the normal
capacity for activity? So, it is really kind of knowing the definition
and thinking through how the equipment would fit within that definition.
What would it do for that person that would meet that definition? And
then presenting it that way. We are helping people write letters of
medical justification and stuff. We are always kind of suggesting that
they use words like medically necessary. Don't use with the words. No
wimpy words. Don't use, it would be beneficial or it would be nice. [
laughter ] Medicaid doesn't pay for things that are nice.
They pay for things that are medically necessary.
Don't be afraid to use the words.
Any other questions?
Great. Well, thank you
so much, Diana. You gave us a lot of great information. I am going to
ask the participants if you can please fill out the evaluation form that
I sent out that was attached to the invitation. Either email it back to
me or facts it back to me with your feedback and any other topics you
are interested in for future teleconferences. I would really appreciate
it. Other than that, have a great evening.
event concluded ]