Event ID: 1549035
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.

IM and audible. I am based at UPC of New York City.

Great. Anyone else on?


Just you?


Posh Olympians from Northern Kentucky.


And this is Lori Brooks from the organ assisted technology program.

How are you question Mark?


Who also has joined us?

This is callings got from New York. I am sitting in for Lisa Razzano.


Hi, Colleen.

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.

Yeah. Understandable.

Hi, Diana. It is named C.

Hi, Nancy. How are you question Mark?

Okay. How is it going in Buffalo?

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 sightseeing.


Sounds fun.

I told 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 join us.


The president is in our city right now right as we speak.

That's right. What is he doing?

He 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 comes.

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 weather there?

Well, it is about 50 in overcast.

How much different than here in Buffalo -- not much different than here in Buffalo.

[ laughter ]

We are having more people join us.

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.

I 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 ones?

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.

Conference record.

All right. 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.

I am 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.

Tosha [ 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.



This is Megan with the infant learning program in Alaska.

All right.

[ 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 you.

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 intent.

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.

It 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 statute.

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 questions, comments?

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 live in.

I have a question. The language says to a ameliorate. When it comes to therapy services, do they differentiate between that in maintaining?

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 program.

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 any --

[ 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?

Hi, Colleen.

I 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 question Mark?

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.

That was 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.

Again, we 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 take?

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 this.

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 wild.

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 mark?

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 discussing this?

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 price.

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 price.

It is.

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 that.

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.

The next one that calls me I am sending your way, Diana.

Don't tell 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.

I think 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 question here.


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.

My question 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.


I 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.

The 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 question Mark.

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 question.


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.

[ laughter ]

They pay for things that are medically necessary. Don't be afraid to use the words.

Thank you.

You're welcome.

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.

Thank you.

Thank you.

Thanks, Diana.

Okay. Thanks.

[ event concluded ]