The “Therapy Voice”

In grad school way back when, SLP majors were partnered with a classmate and sent out to observe SLPs in a variety of workplace settings.  We observed in a nursing home, a rehab center, a public elementary school, a hospital, a residential facility for clients with multiple disabilities, and a state school for the deaf.  Of course, the goal was to gain insight into each of these settings, into the types of clients who were served, how treatment was delivered, and personal reflections of each of the practitioners.  Following each visit, we were to write up our impressions.  This exercise was one of the most valuable experiences of my education, as it helped me to determine my future goals — the type of setting in which I did or did not want to work and how I envisioned my future self delivering services.  Much of this experience has faded from memory, having taken place over 25 years ago, but one observation has never left me:  the “therapy voice.”

It was in a hospital that my partner and I first heard the “therapy voice.”  The SLP met us in her office and we had a lovely conversation about the profession and her experiences with inpatient and outpatient therapy.  Then we followed her to bedsides and into the clinic.  While her therapy activities seemed appropriate to our novice eyes, what really struck us was the way her voice changed whenever she addressed her clients.  Louder, slower, and higher pitched, her voice took on a whole different persona — one that signaled, to us at least, the message that “you are so impaired, you don’t know what I’m saying so I will shout it at you.”  My partner and I looked at each in disbelief, that her friendly, conversational voice could immediately become so seemingly condescending.  Now, mind you, I fully understand that she had years of communicating with people who presented with strokes, brain tumors, neurological disorders, hearing loss, and dementia, and I fully understand that one’s communication style has to accommodate those conditions.  But we observed this same “therapy voice” when she was treating outpatient children and adults in the clinic for articulation, language, and fluency.  It was amazing to us, the way she could switch back and forth when treating clients with the “therapy voice,” then turning to us with comments in a conversational manner.  This wasn’t the last time I heard the “therapy voice” but it certainly was the first, most dramatic, and most memorable.  My partner and I vowed, as we walked out of the hospital, to never, EVER, use the “therapy voice” in our practice.

The bulk of my 25-year career as a public school SLP has been spent with students who have moderate to profound disabilities.  Obviously, I have had to adjust my language level with these students — shorter sentences, simplified vocabulary — but I have held to my promise and ALWAYS speak in a conversational tone of voice, one that presumes that “I know you understand what I am saying,” even when there is little or no outward sign of this.  In other words, presume competence!

Two books I read recently bear out my intuitive use of conversational tone:  “My Stroke of Insight” by Jill Bolte Taylor, and “Ghost Boy” by Martin Pistorius (reviewed on this blog HERE).  Both authors were suddenly stricken with profound injury to the brain, one by stroke, one by an unidentified virus, and were essentially trapped inside bodies that would not, could not respond or be controlled.  Both eventually recovered to a remarkable degree, thanks in no small part to their own strong will and the support of therapists, caregivers, and family.  Both relate horror stories of how they were sometimes spoken to by people (family and medical staff) who didn’t think they could hear or understand.  Jill Bolte Taylor includes a list of “do’s and don’ts” in her book, including the importance of communicating presumed competence and respect through words, but also through tone of voice and body language.  I highly recommend these two books to all SLPs in any treatment setting, as they provide a rare, detailed, and highly personal account from people who experienced traumatic loss of communication.

Beyond reading these books, I really haven’t given much thought to the “therapy voice” in years, but this spring, I saw how damaging it can be.  On May 10, my dear father suffered the first of several strokes.  He was flown by helicopter to a nationally ranked medical center and was given the “clot-buster” drug within the “golden hour.”  The stroke was on the left side of his brain, which initially caused right side paralysis and the inability to speak.  Twenty-four hours, he had regained movement on his right side and could speak, although aphasia was obvious in the “word salad” and word-finding problems he exhibited.  Within a few days, the aphasia lessened, and he was able to speak in longer, more accurate sentences.  We were so encouraged by this and assured him that progress would continue.  Unfortunately, less than a week after the first stroke, he had a second that required emergency surgery to clear a blocked carotid artery and to remove some of the new clots in his brain.  Clots from the first stroke were left in place, due to the risk of bleeding.  Dad again regained movement on his right side, albeit with weakness, and again could talk, but the second stroke wiped out the progress he had made and he was back to being more significantly aphasic.  One only had to look in his eyes to know that he was fully aware of what had happened and was very afraid.

Once medically stable, Dad was released to the local hospital in a small town near his home for two weeks of rehab — OT, PT, Speech.  Dad was evaluated by the SLP and therapy began immediately.  Due to work obligations and distance (85 miles from my home), I could not be with my dad during these first few days, but I did get out there on day 4 so I could meet with the SLP and observe therapy.  This observation was welcomed by the SLP and the rehab director, and I had a good conversation with the SLP about Dad’s status and goals.  Then, when we walked into his room, I heard it — the “therapy voice.”  “HELLO, RICHARD!  DO YOU REMEMBER ME? I AM HERE TO HELP YOUR SPEECH.”  This was said just inches from his face.  Dad immediately recoiled and looked stricken — facial expression, eyes, and body language all expressed this.  After a few minutes of this, I gently told the SLP that Dad’s hearing was fine and that his intellect had not been affected, only his ability to produce spoken language, and said that she could speak to him conversationally.  I also said he was having trouble with yes/no questions, but I was sure that he understood.  Dad shot me a grateful glance, but it didn’t change her approach.  She opened up a book of aphasia therapy exercises and asked him “WHAT GOES WITH —” questions.  When he couldn’t answer, she said, “YOU CAN’T DO THIS SO WE’LL DO SOMETHING ELSE.” She moved on a series of yes/no questions.  When he answered “yes” to “ARE YOU A WOMAN?,” she answered, “NO, YOU ARE NOT.  YOU ARE A MAN” and closed the book.  Dad looked even more stricken.  The next activity was naming photographs. He failed on the first three, so that activity ended, again with “YOU CAN’T DO THIS NOW SO WE WILL TRY AGAIN ANOTHER DAY.”  By this point, it was all I could do to keep from taking the cards from her and modeling, “Look at this picture, Dad.  What is this?  I’ll help you, it’s a ball.  What do you do with a ball?  Can you show me?   Yes, you can throw a ball like this; now you do it. You throw a ball.  You can kick a ball, too, like this. Now you show me, kick a ball.  Look at the picture again — see it is a ball, a red ball.  Can you say that with me?  Ball.”  But I didn’t.  After a few more failed activities, Dad watching all the time as data was collected, the session ended with Dad looking devastated and Mom in tears.  I left the room with the SLP and repeated, very calmly, that Dad’s hearing was fine and suggested that he’d respond better to a conversational tone of voice and instruction, rather than just data collecting (the eval had already been done, remember) to show what he couldn’t do, and perhaps she could be more instructive when he couldn’t name pictures. Dad was a very intelligent and proud man, and failure at questions a toddler could answer cut him to the core.  When speaking with the SLP,  I was very aware that I am NOT a hospital/rehab SLP and did not want to say or do anything that would make Dad’s next two weeks more difficult.  But I know how I would teach my students with disabilities — key word is “teach,” not just collect data.  It’s very easy when people have impairment to only focus on what they can’t do.  My approach is always to focus on abilities, no matter how limited, and build from there.

Well, according to my mom, nothing changed in those two weeks.  Dad responded very well to the OT and PT, gaining skills and trying again with positive effort when he didn’t perform to his highest level, but became increasingly despondent as speech therapy time approached.  After two weeks, he was sent home with in-home therapy.  Because I was up to my eyeballs in the crazy end of the school year, I was not able to get out to their home during the week when the new SLP was there, but after a few frustrating sessions, Mom told her I was an SLP and she immediately asked for my phone number.  We had a very good discussion in which she revealed that Dad would become emotional and even hostile when she was taking data on the same kind of tasks that he had been exposed to in the hospital.  Mom had already told me this, saying that the OT and PT did not take data in front of him and worked on skills that were functional in his home and related to his personal interests and goals, whereas speech therapy was limited to drilling him with questions.  I suggested that she put away the aphasia therapy book and cards for a while, and instead engage him in conversation about his family, his career, his hobbies, his dog, etc.  I told her that Mom had many photo albums of family members, present and past, and brochures from many places that they had traveled;  these would be great conversation starters for him.  Dad was an accomplished woodworker, so I suggested that she take him to his workshop and talk about the tools and the things he had built.  Dad lost the ability to read due to the strokes, but he was still able to put together jigsaw puzzles, an activity that he and Mom did every winter to pass the time;  that would be another way to work on language skills in a relaxed context. And I stressed that, although Dad was 85 years old, he was 100% independent in all areas of life prior to the strokes — drove a car, cut his own grass, handled affairs without any difficulty.  When I visited Dad weekly throughout this time, we had many great conversations about people and events in the past, conversations that he initiated and participated in fully, even if a word or two was wrong here and there.  He talked about his concerns for my mom and the future.  He could tell time and knew when his favorite shows were on.  I’ve never seen so many episodes of “American Pickers” as I did this past spring and summer, and Dad was always able to make insightful and relevant comments about this and other shows we watched together each evening.  I did not evaluate my dad and did not want to be his therapist, but it was very evident to me that his intellect was not affected. When we went out for a drive in their rural area, Dad was able to give me directions all over the countryside to point out places of interest, to get to a farm stand he particularly liked, and always found our way home — an errorless and most enjoyable change of scenery for him that gave him a sense of control.  All of this, I shared with the SLP, giving lots of therapy suggestions that Dad would respond favorably to.  I said I totally understood about the need for data (the bane of my school-based therapy existence), but suggested it could be done more discreetly.  The conversation ended very well, with the SLP expressing her gratitude for my suggestions, as it was clear that she wanted to do her best with Dad and that she was as frustrated as he was.

Well, I’d like to say it ended well, but it didn’t.  The picture cards came out again;  Dad blew up and refused any more therapy from anyone — no OT, PT, or speech.  We hoped after this meltdown that he would relent, and we encouraged him as much as we could to try again, but it was clear to him, and to Mom and I, that he was actually going to make more progress on his own, engaging in daily functional activities, having conversations about things that interested him, commenting during his TV shows, giving us directions when driving or about how to change the water filter, than he would be getting from an aphasia therapy book. And so, I started giving my mom strategies to help Dad that didn’t feel like therapy.  That Dad was so soured on speech therapy, right from the beginning, just killed me, as you can imagine, and I have to think that a more conversational approach that presumed competence would have yielded a more positive outcome.  I completely understood and explained to both of my parents that Dad’s anger and frustration was a very common bi-product of stroke and that it would ease with time and healing.  However, Dad was too demoralized by his experience with speech therapy, and then extended that to all therapies and medical interventions.  He didn’t feel any of it was helping him, and he was done with it all.  Once he made this decision, his anxiety level dropped noticeably and he had a good month of small steps forward.  I could see a positive change in his abilities and attitude every week and we were all greatly encouraged.  Unfortunately, Dad suffered additional TIAs and complications from which he could not recover.  On August 14, this proud, wonderful, admirable, and loving husband and father passed away.

Please understand that I write this not as an indictment of the SLPs who treated Dad.  SLPs are the most caring, compassionate people I know.  These SLPs were no exception. Both seemed to be genuinely nice and caring people, and I’m sure they have helped many patients in their careers. I especially appreciated the home-based SLP who reached out for ideas when she saw Dad shutting down.  As stated earlier, I’m not a rehab therapist, so my practice is not shaped by years of dealing with adults with strokes, dementia, etc.  Maybe rehab SLPs are more strictly bound to certain therapy materials and lessons;  as a school-based SLP, I have free reign to do whatever I think will be helpful to my students, be it traditional therapy or materials/strategies that are highly personalized and even unconventional.  That didn’t seem to be the case with the SLPs who treated Dad. I acknowledge that data must be collected to satisfy insurance requirements; it drives the IEP in schools, and I work hard to keep a balance between measuring progress and actually teaching.  I certainly acknowledge that Dad’s strong personality and damage caused by the strokes also contributed to his very negative reactions.  All that said, I guess I felt the need to write this for a few reasons.  I am still very much hurting over the loss of my dad.  I’m very saddened to know that he wasn’t helped by speech therapy and, in fact, was turned off to all therapies and medical treatment as a result.

This is the first time I’ve been a close observer of therapy with a loved one — very different from being the SLP treating other people’s loved ones.  It was an eye-opening experience;  I viewed the therapy professionally and my dad’s reactions to it personally, and found that very hard to reconcile.  While a person’s prosody may seem inconsequential, Jill Bolte Taylor and Martin Pistorius would disagree, and so would Dad and I. Even if he hadn’t been able to understand the words that were spoken to him, he immediately sensed that the “therapy voice” was an affront to his status as a successful, intelligent, dignified man, and that was his introduction to speech therapy.  I witnessed how Dad perceived each session as a series of tests on which he was found deficient, and saw how badly this wounded his pride and confidence. And I have to agree with him — the activities were rote and without instruction, strategies, or prompts to help him succeed.  No amount of encouragement from me could convince him that he would improve if he would just cooperate and try. This was heartbreaking for my parents and for me;  more than anything, I wanted to do whatever it took to help my dad recover his independence and dignity, and obviously, my mom desperately wanted that, too.   Mom and I saw how Dad watched data being collected after every question, visibly wincing and withdrawing more and more with each tally mark, and that has made me much more aware of the way I keep data with my students. I feel guilty that I didn’t speak up more strongly with the rehab SLP when I saw how offended and saddened my dad was by her approach and tone of voice.  I am not good at confrontation, I never pass judgment on a colleague, and I was in a very fragile place myself.  As a result, I feel that I was overly cautious in expressing my concerns. I also knew that the SLP was not trying to do any harm;  she was just unaware of the effect her manner was having on Dad.  If I had been more clear about my observations, would therapy activities and the relationship have improved?  Would Dad have been more accepting and willing to go along with therapy?  That’s all water under the bridge now for Dad, but maybe by voicing my concerns now in this post, an SLP somewhere might rethink his/her approach and somebody else’s loved one will benefit.  Indeed, shouldn’t we always engage in self-reflection about our practice and do our best to adapt our manner and therapy to each individual? That’s the first lesson in speech 101:  “Establish rapport.”  Right?  If nothing else, maybe the reason I felt compelled to write this post is to finally release some of the feelings that have been bottled up all summer.  It’s been a tough one.

Advertisements

A Salute to Two Generous Souls

Two retirements were announced in the past few weeks by two gifted SLPs whose reach extends far beyond their own caseload.  These women started blogging early on and shared countless ideas and resources, free to anyone who could use them.  I have always admired their generous spirit and creativity;  to me, they represent the best of our profession.

screen-shot-2017-02-10-at-3-33-49-pmCindy Meester’s Blog, “Speech Therapy with a Twist,” is a delightful compendium of ideas for making every aspect of school-based therapy fun, functional, and motivating.  Cindy knocks herself out with amazingly creative theme units.  The photos of her room decorations, the way she incorporates technology and literacy, and the many ways in which she builds multiple therapy lessons into a single theme are nothing short of inspiring!  Just look at her posts!  How could her students and teachers not love Cindy’s “twist” on therapy?  I’m not sure how long Cindy has been blogging, but it seems to me that she was one of the pioneers who has been around at least as long my site.  To maintain this high level of energy and enthusiasm for so many years — that should be the goal of all SLPs.  Cindy has set a wonderful example for all of us and, through her blog, has left a detailed roadmap of inspiration for SLPs to follow into the future.  Cindy will be retiring at the end of this school year, but will be maintaining some part-time involvement in private practice.  This seems a wise move for Cindy;  I can’t imagine this energetic SLP going cold turkey into retirement.

screen-shot-2017-02-10-at-4-21-25-pmRuth Morgan is another pioneer in blogging.  On her blog, “Chapel Hill Snippets,” Ruth describes herself as “a mentor, speech pathologist, mom, wife, and technology junkie.” But that hardly says it all.  Ruth has dedicated her energies to students who have significant disabilities.  In post after post, year after year, Ruth has created and generously shared visual materials to support even the most challenged students in communicating and engaging in literacy activities.  In addition, Ruth has shared lots of ideas on using the iPad in therapy, created easy-to-follow tech tutorials and data forms, and much more. While she has a great fondness for using books in therapy, she also sees potential lessons in everyday life, such as the social skills lesson she built around this funny political ad.  As Ruth prepared herself for retirement, which took place about 2 weeks ago, she wrote a post for her replacement, but the message is one that we all should heed:  Helpful Tips for Teaching a Language Group for Students with Severe Communication Challenges — outstanding advice to read and share.  Those tips give us a glimpse of the insight, compassion, and dedication that Ruth brought to school each day.  Like Cindy, Ruth is more “easing out” than cutting ties abruptly.  After a vacation in Florida, she’ll join the board of New Voices Foundation and promises to keep blogging and creating.

Cindy and Ruth, I am sure I speak for countless SLPs when I thank you sincerely for your outstanding contributions to our field!  You’ve certainly earned a very long and happy retirement.  Congratulations on your wonderful careers.  You are leaving a legacy of creativity and generosity that will continue into the future.

With best wishes,

Pat Mervine

 

 

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!

 

 

 

 

Making Many PDFs into ONE!

pdfjoin-com-logoWhile entrenched in the arduous task of moving all of the materials on the Materials Exchange to a new platform this summer, I became painfully aware that many materials had many pages, some up to 20 (gulp!), because if you don’t know the trick to making multiple pages at once in Boardmaker, each page you create will be saved separately.  For example, a Go Fish game about fruit for 12 players would be saved “Fruit1, Fruit2, Fruit3,” etc.  That meant 12 downloads, 12 titles typed into the new site, and 12 links to be made for uploading. If you take a look at the many pages on the Materials Exchange, you’ll see this process had to be repeated over and over and over….I’m starting to feel faint, just recalling the experience.  No wonder my family started fearing for my sanity.

Having taken a couple of months off from the site to focus on the new school year (which also induces lightheadedness, I must admit), I am ready to start adding new contributions to the Materials Exchange.  Some new /r/ materials were just posted, and a number of core language stories for AAC users will be posted in the next few days.  I welcome YOUR materials for the Materials Exchange because, as I’ve been saying for over 15 years, sharing is what Speaking of Speech.com is all about. It’s a wonderful way to pay back for all of the materials that you’ve used from others. (Clicking the “donate” button on the top of the site is another way to show your appreciation for the new site and to help keep it going.  So far, 23 SLPs and teachers have kindly donated $5 or more to help defray the considerable out-of-pocket costs for this site, and I send my heartfelt thanks to each one).

Now for today’s tech tip — an answer to the problem!  There is a wonderful site called PDF Join that will allow you — for free! — to join multiple PDFs together to create one multi-page document!  This works with Windows or Mac.  Had this technology been available years ago when files were initially uploaded, my summer would have been much easier. Given the sheer volume of work I had to do with thousands upon thousands of files to organize and go through, I simply couldn’t use this tool on existing materials — the volume and chance for error were too great, and I was battling against a looming deadline.  However, I will certainly be using it with all new materials that are contributed.  But, hey!  You can use it, too!  You don’t even have to download any software;  simply follow the instructions on the website.  How awesome is THAT?!  This is just one such tool that I’m sure you’ll find helpful.  Like Dorothy in “The Wizard of Oz,” you may discover that you’ve had this power all along! Here are instructions for using Preview on Macs.  And here on instructions for using a PDF merge tool in Windows 10.  Do you have another easy resource to share?  Please add to the Comments so we all enhance our knowledge.

Checklist for ASHA!

2016_convention_750x338To all the lucky SLPs who will be attending the ASHA Convention next week, WELCOME TO PHILADELPHIA!  You’ll be right in my backyard!  I can promise that you’ll love the City of Brotherly Love.  I’ll be there all three days, and will be doing a poster session on the SETT Process for assistive technology on Friday.  While the sessions are generally awesome, I find the most valuable part of the convention is the opportunity to network with SLPs from all over the world — similar to what happens on the SLP Message Center of Speaking of Speech.com, but LIVE and IN PERSON!!  I am so looking forward to meeting as many of you as I can!!  If you can’t get to the poster session, please keep an eye out for me around Convention Hall and at the Art Museum party, although, at 4’9″ and 100 lbs soaking wet, I can be a little hard to spot in a crowd, ha, ha.  That being said, it will be much easier for you to find ME than for me to find YOU, so please come up to say hello, or as we say in Philly, “Yo!”

As a veteran of previous ASHA Conventions, I have a few tips for newbies who are starting to pack for the trip:

  1.  Take your most comfortable shoes!!  Really, no one cares if you show up in sneakers.  You’ll still be smiling by Saturday, while those with fancy footwear will be sidelined with bunions.  And sneakers will give you an advantage as you dash from one session to another.  You’ll get there in time to get a seat, but those struggling with heels or boots — or worse, boots with heels! — will be locked out or forced to stand against the wall for the entire session, which won’t be making their feet feel any better for the next dash.
  2. Get the free Program Planner app right now!  Survey the offerings, prioritize those sessions that interest you most, download the handouts, and study the map so you know where you are going next. There’s no time to waste between sessions.
  3. If you are traveling with colleagues, lucky you!  Put your heads together and figure out how to cover the most sessions possible, then take good notes and share them.
  4. Dress in layers.  The ASHA team must have paid off the Weather Channel, because sunny days are forecasted Thursday, Friday, and Saturday, with temperatures ranging from around 60 during the day to around 40 at night.  That means you are not going to need a winter coat during the day, so leave it at the hotel, use the coat check room at Convention Hall, or leave it at home and layer up with a sweater and jacket if you’ll be going outside a lot.  But do be sure to bring a light sweater or jacket into Convention Hall.  I’ve been in there when it is freezing and, guaranteed, you’ll find the temps uneven from place to place.
  5. Empty out your purse of all but the most essential items! You won’t need a pen — you’ll be getting dozens of them in the Exhibit Hall.  Tissues, a small bottle of hand sanitizer, your wallet and ID are the basics. And a painkiller, if you didn’t heed my warning in #1.  Take your smallest purse and wear it across your body.  This reduces back strain and gives you another advantage in the dash to the next session. Backpacks can be a nuisance to stow in crowded session rooms.
  6. Bring a sheet of address labels. While there are online entries for prizes, you’ll likely be filling out a bunch of raffle entries and postcards for more info.  Slapping on your address label will save you time and reduce hand-cramps.
  7. Bring your appetite!  You simply can’t leave Philly without wolfing down at least one Philly cheesesteak, a hoagie, a soft pretzel with mustard, Bassett’s Ice Cream with jimmies, anything from DiBruno’s, and water ice (pronounced “wooder ice”).  Many gastronomic delights can be found at the Reading Terminal Market, but be prepared to wait in line.  A quicker and just as satisfying solution is to eat at some of Philly’s gourmet food trucks!
  8. Resist the urge to sign up Philadelphians for artic therapy. Our native son, Bradley Cooper, will help you to understand our regional speech and language.

Looking forward to a wonderful convention!!  Wishing you all safe travels!!