USSAAC Leaders & Legends: Lew Golinker

Today we honor, Lew Golinker! As an attorney and advocate, Lew Golinker has been instrumental in advocating for funding of speech-generating devices for people who use AAC in the United States. He was a key figure in the development of the funding mechanism for speech-generating devices through Medicare and Medicaid opening access to thousands of people who were and are in need of equipment. At the same time, Lew is a generous person, happy to advocate for anyone who’s experienced an insurance denial for a speech-generating device. We can’t overstate our gratitude to Lew for helping our community. Read more to learn about Lew’s experiences as an attorney advocating for decades for people who use AAC.

Questions and transcript editing by Deirdre Galvin-McLaughlin, with Lew Golinker

Lew Golinker, Esq.

Portrait Photograph of Lew Golinker, Esq.

When were you first introduced to AAC? 

My answer is that it literally walked in the door. I don’t have any family or neighbor with speech impairment or any educational connection to speech impairment. My education was focused on environmental science. My clinical experience during law school and my first post law school job was to get health benefits for veterans who had been exposed to Agent Orange and other toxic substances. I envisioned that as a job for life. It didn’t turn out that way.

In 1981, I changed jobs to join what was then a new nationwide program to provide legal assistance to people with disabilities.  In the late 1970’s Congress had created a “protection and advocacy program” to enforce and protect their legal rights. I was the first protection and advocacy lawyer hired to serve people with disabilities in New York City. 

It would be impossible to serve everyone on a one-by-one, first-come-first served basis, so I was told to go find      issues that might have a broader impact – issues that would affect more people. In the summer of 1982, I was contacted by Carol Shaeffler. She was a speech-language pathologist working at the United Cerebral Palsy center in Brooklyn where she provided AAC evaluation and treatment to people with CP and other conditions. She reported she had some success previously with getting AAC device funding from New York Medicaid, but the program was now denying them, saying they were not covered.  At that point, I had never heard of AAC devices.  Carol asked me to investigate the denial and  I agreed. 

Carol had pursued and lost a hearing, which is the administrative appeal that Medicaid offers. The only thing  available to do was to file an appeal to court. Soon thereafter, Medicaid agreed to provide the device and settle the case, which was named Thornton.  By coincidence, Thornton was the first court case involving communication devices that had been filed. (Since then, close to 2 dozen more have been pursued.)

That was my introduction to AAC.  I had no way at that time to predict that speech generating device access is what I’d be doing for the next 40 years.  

How did you learn About AAC?

This question has 2 parts: I had to learn about AAC as an area of SLP clinical practice, and I had to learn about the funding sources that clients were asking to pay for them.  When that first case was presented to me, I knew almost nothing about either one. I didn’t know anything about Medicaid. I didn’t know anything about AAC. I didn’t know much about cerebral palsy or any of the other conditions associated with AAC need. Making matters worse, in the early 1980’s, there were few written resources to review.  

But I had access to an invaluable resource: a small group of SLPs in New York City who were providing AAC assessment and treatment.  They met regularly for a meal and invited me to join them. They discussed their cases and approaches to evaluation and treatment. One of the participants was Arlene Kraat, who became my tutor, and who would later serve as ISAAC President.  

Arlene and the other SLPs of this group were the first to attempt to teach me about AAC.  Over the many years since, many others have been extraordinarily patient and generous with their time to educate me about this field.  They include: Carol Cohen, Diane Paul at ASHA, Howard Shane, Sarah Blackstone, Dave Beukelman, Pat Ourand, Iris Fishman, Melanie Fried-Oken, Pam Mathy, Carolyn Higdon, Marilyn Buzolich, Laura Ball, John Costello, Jennifer Seale and Oliver Wendt.  The list of SLPs who have helped me and to whom I am greatly indebted is far, far longer.  

What were your early experiences with AAC? 

After Thornton, I was not asked to respond to an AAC device denial until 1986, more than 3 years later.  During this period, I worked to correct what I saw as a structural problem that put Medicaid clients at a disadvantage when they sought AAC device funding.  

The problem was that funding source reviewers and hearing officers for appeals almost certainly knew little or nothing about what they were being asked to approve. The requests were for devices that had never been sought before. They were being recommended by SLPs whose education, training, and scope of practice was unknown.  The requests were being made for clients whose conditions were unfamiliar.  In short, funding requests were being presented to reviewers and decision makers who didn’t know the clients, their conditions, the professionals who provided assessment or recommendation, the possible treatment options or how choices were made among those options.  What they did know was that the benefit provided by the equipment was not curative.  And that the devices were costly.    

Those facts are a recipe for a denial. 

My concern was that funding source reviewers would say ‘I don’t know, so the answer is ‘no,’ and that decision makers in appeals would defer to the funding program staff.  Appeals hearing officers wouldn’t understand what the SLPs had done or they were saying.  They also would assume funding program staff knew best what their programs had to provide – or not. 

I wanted to level the playing field or better still, tilt it so that decision makers would give deference to clients’ SLPs. Two challenges had to be met to accomplish this goal.  First, we had to create a persuasive explanation for why AAC devices should be recognized as ‘covered benefits,’ i.e. devices or equipment that ‘fit’ within the scope of the Medicaid or other funding program.  We did this by modifying a kids’ game that asks: ‘which of these is not like the others?’  We pointed to other items and services and explained that Medicaid identified as covered benefits and explained how and why AAC devices were just like them.  We then challenged funding source staff to explain how or why they were different.  They couldn’t.  

We knew that Medicaid covered medical devices or durable medical equipment (DME), including wheelchairs; prosthetic devices, including the artificial larynx; and SLP services, which included “necessary supplies and equipment.”  We didn’t have to “choose one” of these categories: it was understood that care as well as devices could fit within multiple benefits categories. 

Playing the game in the context of the DME benefit, we explained that wheelchairs, which are covered as DME items, provided the same functional benefits to their users as did AAC devices.  There were motor pathways that enabled walking and speech; if they were broken or damaged, signals could be re-routed to another body part such as the fingers and hands to direct a medical device – the wheelchair or AAC device – to accomplish the functional goal of movement from A to B or of speech.  

Another example: when funding sources claimed that AAC devices did not ‘treat’ the underlying condition, we again pointed to wheelchairs and noted they were covered even though they also ‘treated’ only functional effects.  

The same approach was taken with “necessary equipment” which is a part of the Medicaid SLP service.  We explained that Medicaid recognized speech impairment as an important-enough problem to provide treatment to correct it – through delivery of SLP services directed at oral speech.  We also explained that AAC was a form of SLP services that will benefit people not able to use oral speech effectively.  As an example, we explained that a goal of treatment was to be able to speak clearly enough to be understood, say, to be able to express a need for help.  If services would be provided to achieve that goal via speech, how is that goal at all different or in any way less important or less “medical in nature” to provide services that will enable the same message to be voiced by a AAC device than by the client’s speech?    

The prosthetics comparison was easiest of all.  The artificial larynx was covered.  It is a device recommended by SLPs.  It is speech aid.  How are these two devices different?  That question is even harder to answer when we explained that clients with progressive impairments such as head or neck cancer might receive SLP services at first; then, use an artificial larynx as the condition progressed to require a laryngectomy; and finally, need an AAC device if the cancer advanced to require a glossectomy.  

We played that ‘game’ because we knew funding program staff would not be able to respond persuasively.  Embarrassingly un-sophisticated?  Not at all: “simple” worked. 

The second challenge was to construct a factual basis for SLPs to say their evaluation procedures – the questions asked and data collected – and the exercise of their professional judgment about what clients needed were more than ad hoc judgments. We wanted to show that SLPs implemented standardized procedures and applied professional standards of practice.  And, that all SLPs followed these procedures and applied these standards on a consistent basis from client to client.  

I worked with Arlene Kraat to develop a set of guidelines and standards that she brought to the New York speech-language-hearing association which approved it.  From that point forward, we persuaded SLPs in New York to explain in Medicaid appeals that their actions and judgments were based on their education, training and experience; that they followed a template for their assessments and recommendations that was based on professional standards; and that they followed this procedure for every client. This explanation was sufficient to gain favorable outcomes for several clients.  In those cases, funding source staff had no experience or knowledge to object to the outline SLPs were following or to the standard SLPs applied to reach their conclusions based on their assessments.  

As word spread throughout the state about these successes, it became easier to convince SLPs to provide this information.  And, as the number of successes increased, their quantity acquired a quality of their own.  The increasing pile of favorable decisions helped persuade decision makers to accept AAC devices as covered by Medicaid and other funding sources and to accept SLPs as knowledgeable and careful professionals to whom deference should be given.  And for these reasons, denials of the AAC devices SLPs’ recommended should be overturned.  

Acceptance of AAC devices by NY Medicaid did not occur overnight.  To the contrary, it took approximately 8 years – from 1983-1991. 

For example, between 1987 and 1991, Medicaid staff adopted the position that AAC devices were not covered Medicaid benefits and they rejected all requests for AAC device funding.  Almost all of these denials – several dozen — were appealed and were overturned.  Two other NY P&A attorneys and I, in 3 different cities, represented the Medicaid recipients in these appeals.

Eventually, this pattern of deny-appeal-reverse-repeat was noticed by a senior NY Medicaid administrator and he put a stop to it.  He convened a work-group of the same SLPs Medicaid staff were ignoring and asked them to develop a set of guidelines for assessment, decision making, and reporting.    A proposal was submitted to Medicaid and was adopted in November 1991.  To my knowledge these were the first AAC device guidelines that addressed all of these topics and the first that were SLP developed or otherwise professionally sound.   

Medicaid adopted the proposed guidelines and for several years, denials of AAC devices by NY Medicaid all but ceased.  From that point forward, the challenge was to create the same opportunities for clients with AAC device need in every other state, and who had any source of health benefits funding.  

The success in New York sounds like a major success.  What others have you had? 

Before addressing the substance of your question, I want to refocus it from “me” to “we.”  Every success related to expansion and protection of SGD coverage, funding and access was possible only as a team effort.  To be successful in any venture related to SGD funding, a team consisting of clients, SLPs, the SGD manufacturers or suppliers, and advocates, are essential participants.  

Of direct benefit to me is that the SGDs manufacturers have recognized the value of having an advocate focused on SGD funding and access.  In 1996 several SGD manufacturers agreed to create my positon and have continued to support it since then.  As a result, people with complex communication needs have opportunities and advantages that do not exist for people with mobility or other functional impairments.  They have no specific advocacy resources focused on their needs.  

Equally important to every success has been the willingness of countless SLPs, other clinical professionals, device manufacturers and suppliers, and other advocates to be extraordinarily generous with their time and expertise to support efforts to protect and expand SGD funding and access.  I cannot overstate my gratitude for or the value of their help.  The teamwork that exists in support of SGD funding and access enables issues to be confronted and resolved wherever they arise.  

Turning to specific funding sources, the greatest success for our field is Medicare.    From 1987 to 2000, while other funding sources were adopting AAC devices as covered benefits, Medicare had nationwide guidance that said AAC devices were “convenience items.”  Medicare never had any basis for this conclusion but getting Medicare to re-examine this guidance and to reverse its conclusion required extraordinary teamwork and effort.  The first success, in mid-1999, was to persuade Medicare to agree to re-review that policy conclusion.  It asked for information to be submitted to support a policy change.  As a work-group was being organized to respond, Dave Beukelman stated:  “It [seeking Medicare policy change] may be the most impactful (what a word) thing that we do in our AAC careers.”  I was never one to disagree with Dave’s observations and I believe this one was spot-on as well.

The period since January 2001, when Medicare’s revised policy went into effect, reinforces Dave’s observation.  Between January 2001 and the end of 2021, almost 75,000 SGDs – a phrase Medicare coined — have been purchased by Medicare, and countless more have been approved for purchase by other funding sources that followed Medicare’s lead.  

I also believe the additional Medicare decision in May 2001, to accept computer-based devices for funding has been the most consequential event for our field after the development of voice-output or text-to-speech software. 

After the two Medicare policy changes, the elimination of close to all policy-based barriers to SGD funding and access by all other health benefits funding sources are the most significant – consequential – successes that we, as a field, have experienced.  Eliminating ‘coverage’ and ‘medical need’ barriers and limitations and SGD exclusions makes SGD funding and access within reach by close to everyone with SGD needs.  

I can think of nothing of greater impact than what these accomplishments have made possible.  

What changes have you observed in our field during your career?

Dave Beukelman said there had been a Pioneering Phase and a Public Policy phase in our development as a community.  I am happy to have had the opportunity to help develop the Public Policy phase so that it supports broad opportunities for individuals to improve their communication functioning.  

I believe we are transitioning yet again, to a third phase, but I don’t have a clear picture of what it will be like.  I hope it will be a period of routine acceptance.  During a period of routine acceptance, SGD funding will not be controversial.  Instead, SGD funding and access will be the predictable and consistent result of a reasonable assessment procedure and professionally sound medical need standard.  

I hope this will be where our community will be, but we are not there yet.  Over the past 40+ years, funding sources have demonstrated an all but boundless creativity to invent new barriers to SGD coverage, funding and access.  Despite our many, many successes, there still are funding and access issues to be addressed.

For example, at the outset of my career – at the outset of SGD availability — funding sources were concerned about “coverage,” that is – are the devices being requested appropriately considered benefits of the funding source?  That question was controversial for years and it was the primary excuse for SGD denials.  But now, ‘coverage’ based denials are very rare.

Instead, the focus has shifted to whether the SGD requests satisfy funding source medical need criteria, particularly the concept of ‘least costly equally effective alternative.’  The number of device models and the range of prices for these devices has grown very large, and there is a large number of software and accessories options. Some funding sources are coming to view SGDs as homogeneous or interchangeable, that ‘one size will fit all’ and that they can be recommended and approved for funding solely on the basis of lowest cost. 

I view that perspective as a direct threat to our community and to our ability to meet our clients’ needs.  To defeat this potential challenge, we need to revisit the assessment process, particularly how SLPs consider alternatives. SLPs must be instructed to consider the least costly available alternative device in every assessment.  And each time they recommend an SGD other than the least costly option, they must explain in detail, possibly with objective data, why that device is not equally effective to the one being recommended and therefore, why it is being ruled out.  To make this strategy work, SLPs need resources to help them identify differences in the capabilities and functioning of hardware, software, and accessories, and of service and support between lowest-cost and recommended devices – resources that do not now exist, but which are urgently needed.   

Thank you for reading this blog post. The views expressed in this post are that of the author, and do not necessarily reflect the views and policies of USSAAC members and board members. No endorsement by USSAAC is implied regarding any device, manufacturer, resource or strategy mentioned. We would love to hear from you. Please share your thoughts with a comment below or send a message through our contact page.

Leave a Reply

Your email address will not be published. Required fields are marked *

AAC Info

There’s a broad range of strategies and devices that individuals may use for communication if their speech isn’t functional.

Read More

Become a Member

Join us in our mission to enhance the lives of people with complex communication needs.

Read More

Our Latest News

Find out about events and webinars of interest to the AAC community!

Read More