The Power of Persistence

In November 2015, my assignment was changed from part-time SLP/part-time assistive tech consultant to full-time assistive tech.  In this role, I support augmentative communication needs in two school districts, one residential facility, one specialized day school, and two vo-tech schools. That has caused a distinctive shift in the age of the students I am supporting.  Suddenly, I have a long list of students in the 17-20 age bracket who are using district-owned AAC devices or who don’t have a device but could use one. Given their age, the goal is to obtain their own device funded by their medical insurance so they can continue to communicate effectively when they exit the public school system at age 21. For students who use a “standard” speech-generating device (SGD), such as a NovaChat (Saltillo), Accent 1000 (Prentke-Romich), or T-10 (Tobii/Dynavox), obtaining funding through medical insurance is generally not a problem.  Yes, it takes a lot of time and paperwork (AAC eval report, parents’ assignment of benefits form, physician’s statement of medical necessity and prescription), but commercial and state Medicaid insurance programs are increasingly likely to cover the cost of these devices. Students who use these devices happen to be in the minority in the schools that I now support.  The majority of the students use iPads with AAC apps, primarily TouchChat HD with Word Power, ProLoQuo2Go, and GoTalk Now.  One district is heavily leaning toward CoughDrop, so that app is now in the mix, too.

From the school district perspective, there are advantages to using iPads as AAC devices:

  1.  An iPad with an AAC app and protective case is much less expensive than standard SGDs.
  2.  AAC apps offer robust, easy-to-program vocabulary, comparable to the software on standard SGDs.  Indeed, TouchChat HD with Word Power is nearly identical to the software in the NovaChat, and Word Power can be added to Accent devices.
  3.  When the iPad needs repair, the districts now keep a stock of loaner iPads that can be immediately provided to the student so there is no break in communication and no issue with non-compliance with the IEP.
  4.  When an iPad with an AAC app is recommended at the conclusion of the SETT framework, districts can generally provide this device to the student within days or a few weeks.  Obtaining a recommended SGD through insurance can take months.
  5.  So many middle schools and high schools in our area are providing tablets to their students as part of their curriculum, so using an iPad for communication doesn’t make our students look different from their peers who are carrying around the same device, albeit for other purposes.
  6.  Some students in preschool and early elementary programs would benefit from having AAC support in their younger years, but will eventually outgrow the need for them as their speech and language skills develop.  In these instances, it makes more sense to provide iPad-based AAC support than to obtain insurance funding for an expensive SGD that may only be used for a few years.

That said, there certainly remains a great need for standard SGDs for some students.  Like everything else in special education, the decision to go with one device or another is highly individualized and should be made with careful consideration of many factors.

Of course, as in most things in life, with every upside often comes a downside. The downsides for my secondary students of using an iPad for communication:

  1.  The district owns the device and will take it back when the student graduates.
  2.  iPads for communication are less likely to be funded by some insurance companies.  This is especially true for a particular state Medicaid insurance company in Pennsylvania which has held to a “no way, no how” policy against iPads for communication.  And there begins our story…..

A nineteen-year-old student with Angelman Syndrome (I’ll call her “Linda”) had been exposed to many AAC systems over the years:  PECS, static communication boards, photographs posted around the house, low-tech devices such as the GoTalk and talking switches, and sign language. For a variety of reasons, none of these adequately met Linda’s expressive communication needs.  The SETT process was initiated and I was called in to see what other options could be explored.  A brief trial with a NovaChat was unsuccessful, primarily because Linda didn’t respond well to the abstract symbols.  In addition, due to her overall clumsiness and tendency toward drop seizures, the team felt the case wouldn’t offer adequate protection.  We then tried an iPad with several AAC apps.  Linda’s response to GoTalk Now was great!  Set up with realistic drawings that come with the program, plus photographs from Linda’s environment, on boards of 4-12 symbols, Linda was able to ask to use the bathroom; participate in classroom activities, such as morning meeting, art, and cooking;  make choices throughout the day; and terminate or refuse appropriately.  Of course, this took a lot of modeling and engineering of the environment to provide opportunities for all of these functions of communication, but within a short time, Linda was seeking the device, and her normally fleeting visual attention improved.  Data collected during the device trials clearly indicated that the iPad with GoTalk Now was the device for Linda.  Also important, the iPad could be housed in a thick foam case.

screen-shot-2017-01-02-at-6-20-02-pmAlready well aware that insurance companies won’t fund an off-the-shelf iPad, we opted for a “dedicated” or “locked” iPad-based device, the ACCI Choice Communicator by Augmentative Communication Consultants, Inc., in which all features not related to the communication app have been disabled.  This configuration of a dedicated iPad-based device meets the Medicaid/Medicare definition of Durable Medical Equipment (DME). The AAC eval report was written very carefully to specify what had been tried in the past, and to detail the positive feature/match of the dedicated device and GoTalk Now to Linda’s very specific needs. Stressed in the report were the advantages of the software (realistic drawings, simple layout, ease of programming for parents, plus Linda’s positive response to it) and the durability provided by the thick foam case.

Confident that all bases were covered, and secure in the knowledge that this particular Medicaid insurance provider had already approved, as both primary and secondary coverage, the same device for several of my other students, we sent off the funding packet in April and anticipated receipt of the device by May.  Instead, we received a rejection letter that stated as reasons for denial:

  1.  The device was an iPad which could be used by anyone without a medical need.
  2.  The provider is out-of-network.

The insurance company never questioned medical necessity for Linda, but they didn’t recognize that the dedicated iPad is useless for anyone who doesn’t have a significant communication disability.  Instead, they recommended that I request a “standard” device from two AAC companies, which they named.  Those devices cost between $4000-$7000+ and were already proven in our trials to be too sophisticated for Linda.  The device we were requesting costs $1550.  In effect, the insurance company was willing to pay for a Cadillac that Linda couldn’t drive, but denied her the Volkswagon that she could.

I called the insurance company to explain we were asking for a dedicated, locked iPad, and that it was from a sole provider (which is an exception for Medicaid coverage), but got nowhere.  I was told to follow the appeal options listed in the denial letter.  So I did….

  1.  I requested a “peer-to-peer conversation” but was told the insurance company’s “peer” would only speak to another physician.  When I explained that the physician was a very busy pediatrician and that I, with 25 years’ experience in AAC, could better explain the rationale for requesting this device, I was told, “no, our physician will not speak with you.  He will, however, speak with the pediatrician’s office manager or nurse, if the pediatrician can’t participate in the call.”   ARRGHH!!
  2. I filed a written complaint with the insurance company and the Department of Human Services.  The insurance company reviewed it and issued an identical denial.
  3. I requested a telephone appeal.  This was granted, and again we received the same denial.
  4. I filed a second level complaint.  As a result, I had to travel 40 miles to appear before a 3-person panel:  a physician and an employee of the insurance company, plus a non-employee who participated by phone.  I presented charts and graphs, written testimony full of footnotes that cited relevant Medicaid regulations and case law, and demonstrated the various devices and apps. Linda’s mother participated by phone and spoke to the improvement in her daughter’s attention and independence when using the trial device.  Again, we received the same denial — literally word-for-word. The insurance company would not recognize that a dedicated iPad meets the same DME criteria as a “standard” device.”  They would not acknowledge that ALL of the 10″ dynamic display devices are built on one tablet or another, or that ALL can be unlocked if the parents choose to purchase the “key” once they have the device in hand.  They would not acknowledge that Medicaid regulations allow for funding through an out-of-network provider if that is the only source of the needed equipment or service.
  5. As is my right according to the denial letters, I wrote TWICE to request a copy of the Medicaid and/or insurance company policy on which the denial was based.  I wanted to see where it is written that either Medicaid or this specific insurance company will not fund a dedicated iPad for communication.  I never received a response.
  6. I filed for a hearing before an adminstrative law judge.  Prior to the hearing, I mailed to the judge a thick packet of all documents related to this case:  the initial eval packet, every denial letter, and every letter and written testimony that I had provided along the way.  Linda, her family, and I traveled 30 miles to appear before the judge in a courtroom, where I presented the bulk of the testimony to justify the specific iPad-based device (basically a repeat performance of the second level complaint meeting) and had to cross-examine the insurance company’s lawyer and their medical director, who participated by phone. Linda’s mother and grandmother, a retired special education teacher, testified to the improvement they saw in Linda at home.  After an exhausting two hours, we left the courtroom, knowing that we had done our best.  To aid in her deliberations, the judge ordered that I provide photocopies of the symbol sets from GoTalk Now and two other “standard” devices, and also a statement from Linda’s teacher as to improvement noted in school.  The judge ordered the insurance company lawyer to provide the written policy on which the denial was based, the same policy I had requested twice, and also ordered that a copy be sent to me.  We had two weeks to comply.
  7. I immediately provided the requested information with a cover letter to the judge and also sent a copy to the insurance company lawyer.  I never received anything from him.  That meant two written requests and a judge’s order failed to produce a regulation or policy document that specifically prohibits funding of a dedicated iPad.
  8. I requested through the Department of Human Services an external review of this case.  The outcome of that is still pending.

I recognized early on that we were in for a fight, and that the issue was for more than just Linda.  The insurance company’s repeated denials would mean that many AAC users would be denied access to appropriate and affordable communication systems. This incensed me as an SLP first, but also as a taxpayer.  For the price of one $7000 “standard” device that they were willing to fund, four students could receive the $1550 device.  I also learned that another state Medicaid provider in a different part of the state was denying “standard” SGDs, instead recommending an iPad-based device — the complete opposite of what was happening in my part of the state!  Something is seriously wrong with this system!  I did some research into how Medicaid providers in other states address the dedicated iPad issue.  Massachusetts regulations have a line that basically says (and I’m paraphrasing here) “…and must be the most inexpensive option available that fully meets the users needs.”  That little line would certainly open the door to dedicated iPad-based SGDs for whom that is the most appropriate device.  Minnesota regulations spell it out explicitly:  a dedicated iPad for communication is covered as long as it meets the requirements for medical necessity.  It is quite possible that other states have similar wording, but finding these two was enough for me!  I am now working with two state representatives and a state senator from our area to see what changes can be made at the state level so no one else has to go through this battle, so no other AAC users are denied appropriate SGDs, and so taxpayers aren’t footing the bill for expensive SGDs that don’t match the users’ needs.   (Again, I want to emphatically state that there is certainly a need for these “standard” SGDs, and they are certainly the most appropriate choice for many users.  Indeed, I’ve recommended NovaChats, Accents, and other sophisticated devices for many students in my career and will continue to do so.  I just also want to have the option of using an iPad-based, dedicated SGD with students for whom that is most appropriate.  Ablenet’s Quick Talker Freestyle is another example of a dedicated, iPad-based SGD that, like the ACCI Choice Communicator, offers a choice of communication apps and cases.  The major difference is that the Quick Talker Freestyle comes with blue tooth switches for those who use scanning).

Well, very long story short….Linda’s device trials started in January 2016.  The funding packet for the iPad-based device was submitted in April.  On December 21, we received the judge’s decision — WE WON!!!  She said the insurance company’s “denial was wrong,” and went on to say that they were unable to prove that the more expensive devices they recommended would be more appropriate than the device we were requesting, and that they failed to provide written regulations or policy on which their denial was based.  She gave the insurance company five days to approve the funding.  They complied, and Linda received her device right after Christmas!  Woo woo!!

There were those along the way who suggested I just give up and go with a “standard” device.  My husband, definitely feeling my pain throughout this arduous process, offered to buy Linda the device, just to put an end to my frustration.  But he knew, and I knew, that the fight had to go on for the benefit of Linda and all students who come after her.  My message to you is – be prepared and don’t give up!

  1. Caution parents from the beginning that the process may be lengthy but remain optimistic.
  2. Decide with the IEP team and LEA what AAC system will be available to the student until a device is funded.
  3. Do plenty of research on how to write an effective AAC eval report for medical insurance (it’s different from a report you’d write for school). Proving medical necessity is key. Google “Lewis Golinker;” he’s an AAC attorney who has great resources worth exploring.
  4. Present solid evidence in your rationale for each requested device, software/app, and accessory using feature/match to the student’s specific needs, and contrast this with what has been tried and found to be unsuccessful. You have to prove definitively why the device you are asking for is the most appropriate.
  5. If you receive a denial, follow the steps in the appeal process that will be outlined in the denial letter and stay within their stated timelines. Keep your cool and maintain a professional attitude on the phone, in person, and in writing. Then go punch a pillow if you have to.

If you are fighting a similar battle and need additional information or encouragement, please contact me and I’ll be happy to do what I can to support your efforts.  I can’t guarantee your success, but I know you’ll never achieve it if you don’t try!

 

 

 

 

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3 thoughts on “The Power of Persistence

  1. This is an excellent post! Thank you so much for your knowledge, willingness to share and collaborate, and for taking the time to think it up/write it up/post it. I will share this post with my AAC colleagues. You are greatly appreciated!

    Stephanie Tarrant Martin, Ph.D.
    Speech/Language Pathologist-CCC (ASHA)
    Certified Autism Specialist-CAS (IBCCES)

    Like

  2. Wow! I’m so glad you shared this story. I LOVE working with AAC but dread going through the process of getting them. You give me hope. I would love to see the system changed and it’s people like you who make that happen. I thank you!.
    Lia Kurtin M.S. CCC-SLP
    Speech and Language at Home

    Like

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