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Be an advocate

This summer I had an interesting experience with a major insurance company who initially approved and gave authorization to one of my little 3 year old clients, who I evaluated and diagnosed with severe apraxia. This little guy was just 3 years old, and maybe had 5 words in his lexicon, all unintelligible to an unfamiliar listener. He could not even consistently attempt to imitate monosyllabic words. His receptive language skills were at least at age level. Cognition the same.
After 2-3 months of treating this little guy with a motor-planning & sound-sequencing approach to his speech therapy, his parents received notification from this insurance company that his therapy was denied since “apraxia was not medically necessary” and deemed “developmental.” Their communications stated that this little guy would “outgrow” this communication issue in time. I have been in private practice for almost 28 years, and I can truthfully say that I was ALL IN to fight this decision from the Medical Director of this big engine insurance company. I consulted with an expert, Janet McCarty, down at ASHA headquarters, and she provided me with excellent professional advise and also solid evidence to fight for this little guy. I organized my information, consulted with the family and got their “green light” to proceed, and it became a step by step process to help this Medical Dr. understand that apraxia is NOT a developmental disorder, but rather a neurologically based disorder that results in disruptions to a child’s ability to sequence the necessary motor movements to produce speech sounds. My favorite part of this story is when I asked the Dr. how much time I had to discuss my client with him during our peer-to-peer scheduled review, he informed me that “he did NOT want to be lectured about apraxia because he had googled it and saw the word ‘developmental’ tossed sporadically around the literature, and that was all he needed to see to be convinced that apraxia was not a medical condition with neurological basis.” I quickly lifted my jaw off my desk, and found the need to hit my reset button, then proceeded to help this “medical expert” understand more about apraxia from THIS expert in the field of speech and language. While my conversation and exchange made some positive impact on this individual, he still felt the need to take this case to the next level by calling in an outside 3rd party, Pediatric Neurologist. I knew that was going to be a medical professional in MY corner. Sure enough, this Pediatric Neurologist and I had a chance to speak about this little guy, and I was able to answer specific questions related to his progress with the approach that was being employed in his sessions. Her recommendation was absolutely 100% in favor of this severe speech disorder, apraxia, being neurologically based and medically necessary. He would NOT outgrow it in time, or make any improvements with 1X/week speech therapy in a small group setting.
My point for sharing this story is to say, while it is so often frustrating to deal with these major and minor insurance companies, who only want to hold onto the cash, and not support SOOO many families who pay so much money in their monthly insurance premiums, you have got to fight for these clients. When you meet, evaluate, work with a child and their family and you KNOW that this child NEEDS therapy, whether 1X/wk or 3X/wk, you must advocate and spend the time to fight for this child, no matter how BIG these insurance companies are, OR how much they flex their muscle and try to shut you down.
I need to correct my earlier statement when I referred to my “favorite” part of the story….. in fact, my FAVORITE part of this story is that my little guy, who is now 3.6 years old, was approved for intensive therapy to treat his motor planning disorder. He is making remarkable progress and I am quite confident that by Christmas he will be able to tell Santa what he wants in a long sentence….. mom might need to help interpret it some, but he will be able to talk, and say whatever he wants to say!!!!

When My Child Seems To Understand Almost Everything But Isn’t Speaking

There are young children out there who have great difficulty speaking and expressing themselves. They may seem to understand language spoken to them, but really struggle to form the sounds into intelligible words, and may even be considered nonverbal.  Consulting  with a trained and highly experienced Speech-Language Pathologist is the best thing to do if you are concerned about your child’s speech and language development. Don’t listen to others who might tell you that your little one is “Just slow in talking,” or a pediatrician who might suggest you wait another 6 months.  Apraxia is a neurologically based motor planning disorder that interferes with the timing and coordination strategies necessary to produce a series of speech sounds.  As parents often report, these children are typically quiet babies who do not go through the normal development of cooing & babbling in their vocal exploration. If they do speak at all, they may use sounds that are considered more complex in the profile of sound development in young children.  For example, rather than using earlier developing sounds such as p, b, m, they may be heard saying word approximations with f, v, th, ch.  Parents also share that their child may have said a particular word or phrase that was fairly complex and also intelligible, and then they were never able to say it again, even when a model was given to try to get the child to repeat what they said earlier.  Since there isn’t a blood test or brain scan or even any current standardized speech & language tests that can clinically diagnose apraxia, specialists rely on characteristics and lists to help identify the signs & symptoms of this disorder. Below are some signs & symptoms  that can be looked at to help a parent decide if their child who is a late talker might benefit from being evaluated by a Speech and Language Pathologist.

  • produces one syllable for many or all words (“da” means ‘daddy,’ ‘dog,’ ‘book’)
  • often omits a sound or syllable (“wah” for ‘water’)
  • finds speech easy one day and more difficult another day
  • reverses sounds or syllables (says “shif” for ‘fish’)
  • adds extra sounds or syllable in words….lots of times a mid-central “ah” vowel
  • produces more errors as they try to say longer utterances
  • correctly says a difficult word then cannot repeat it
  • comprehends language much better than being able to express themselves
  • speaks too slowly or too quickly and also places inappropriate stress on certain syllables or words
  • exhibits “groping” behaviors while trying to find the correct mouth positioning
  • displays expressive language delays that could include limited vocabulary, grammatical errors, or incorrect syntax
  • may have signs of hypotonia (low muscle tone) especially in the trunk and oral hypotonia, little facial expression (low muscle tone in oral cavity)
  • displays gross and fine motor incoordination (clumsy child)
  • may have sensory integration dysfunction and self-regulatory issues (difficulty calming self)
  • uses both hands (child usually show a hand dominance by age 2)
  • comes from a family with speech, language, and learning problems

Cool Technology Being Used with Children with Autism Spectrum Disorders

Recently I was reading in the Northeastern monthly magazine about about Matthew Goodwin, who is an assistant professor with joint appointments in the College of Computer and Information Science and the Bouve College of Health Sciences.  He has studied autsim for almost 20 years, and codirects Northeastern’s (Boston, MA) new doctoral program in Personal Health Informatics.  Goodwin has been doing research with children who have more advanced ASD and is taking the “lab” to them.  Since 30-50%  of children on the autism spectrum are too  severely impacted to comply with being tested in a typical lab setting surrounded by unfamiliar people, working for an undefined period of time and performing tasks they’ve never done before, all of which require tremendous amounts of self-regulation, Goodwin has designed an opportunity to study these children in settings where they are more comfortable and familiar.

“One in 88 children has been diagnosed with autism sprectrum disorder, making the condition more common than childhood cancer, AIDS, diabetes, and spina bifida combined,” reported by Goodwin. He adds that the current research in ASD is more focused on what causes ASD, rather than what we can do to help children diagnosed and the caretakers living with them.  He is concerned that the number of children being diagnosed with ASD is far exceeding the number of specialists being able to treat and provide excellent therapy to them.

Goodwin is working with computer science and electrical engineers to create sensors that can be woven into clothes, embedded into accessories, or inserted into devices that can be carried or worn.  The devices continuously record physical activity patterns and autonomic nervous system sensing-that is, how a body is responding biologically.  Other equipment is also used to integrate the information, such as video cameras, microphones, and radio-frequency identification tags.  By incorporating these technologies, Goodwin believes he is obtaining poweful information in natural settings-at home, school, and in the community–about what is happening to an individual with more challenging forms of ASD.  He adds that this is analogous to using Xrays, MRIs  and CTscans to non-invasively study the internal aspects of the body, in that this combined technology assists in understanding communication, socialization, and the behavioral development of children with ASD.  “Behavioral imaging” is the terminology he uses to study the whole child in these naturalistic settings.

Children with autism frequently engage in repetitive motor movements such as hand flapping, body rocking, and finger flicking.  These behaviors are poorly understood and often times felt to be abberant behaviors.  Goodwin’s research study allows these behaviors to be recorded and studied since the wireless and wearable sensors collect information on movement patterns. These behaviors can be better understood as to why a child might be engaging in those behaviors and rather than just telling a child to “stop doing that, it looks weird.”  Goodwin adds, “We’re finding in some that physiological arousal is predictive of a child’s performance on a task or a precursor to certain kinds of behaviors.  This gives a better sense of causal relationships between overt behavior and internal physiology, suggesting that the behavior isn’t defiant or pathological, but instead an attempt to self-regulate.”

Since many autistic children will gravitate toward computers and other dynamic media, Goodwin and his colleagues can more easily study them using webcams that can automatically recognize a child’s facial expressions along with the embedded technologies that can record their physiological state.  These and other technologies can record whether a child is agitated or calm, an especially useful tool in predicting the behavior of a nonverbal individual.  This information can allow parent, teachers and caregivers to adjust their interactions with a child.

Finally, the goal of Goodwin’s research is to learn as much as possible about what distinguishes children with and without ASD and to understand what are the most appropriate teaching methods possible, so not only to provide a better life for those affected by ASD, but also to train parents, teachers, therapists and caregivers.

 

Why won’t my child speak when spoken to?

A couple years ago a mom approached me about her 4 year old twin daughters saying that she wondered why they wouldn’t speak to others outside of the family.  She explained that they were super verbal with each other and would talk to her and her husband, but as soon as they were outside in the community, at school, a playground, in a store, at a birthday party, they would never say a word.  I told her that there could be several reasons contributing to this type of concern, but more than likely given their age-appropriate speech & language skills, cognitive skills and also their apparent interest in being in social situations and not avoiding social contact with other children and family members, their silence could be connected to a fairly new disorder called Selective Mutism (SM).  Selective Mutism is defined as a disorder in which an individual cannot speak in specific situations where there is an expectation of conversational speech, according to the American Psychiatric Association, Diagnostic and Statistical manual of Mental Disorders, 4th Edition. According to Joleen Fernald, M.S., CCC/SLP and doctoral student, SM has been misconceived as being caused by trauma or abuse. “Research has found no causal link between the two, but rather concludes that family history of anxiety predisposes the child to SM, as well as the child’s individual temperament,” according to Fernald. Many children with SM having underlying challenges in the area of sensory procesing, speech and language, and executive functioning.  Fernald works at the Selective Mutism Clinic in Dover, NH.  This diagnostic and treatment clinic was founded based on the expertise of Fernald and the multidisciplinary team of professionals , including behavioral health, occupational therapy and speech-language pathology services.  Specialists working with children with SM use treatment approaches such as DIR/Floortime enables clinicians, parents and educators to construct a program tailored to the child’s unique challenges and strengths. This treatment approach incorporates problem-solving exercises and involves a multidisciplinary team of specialists.  Elisa Shipon-Blum developed the Social Communication Anxiety Therapy         (S-CAT), and implements this approach with children diagnosed with SM at the Selective Mutism Anxiety Research and Treatment Center (SMart Center) in Jenkintown, PA.  Families are finally able to find the help they need for their children whose speaking challenges fall into the diagnostic profile of SM.

Aphasia Treatment helping Gabby Giffords

It was January 8, 2011, in Tucson, Arizona, when Gabrielle “Gabby” Giffords was shot in a Safeway parking lot by Jared Lee Loughner.  Congresswoman Giffords captured the attention-and deep sympathy of our nation and beyond.  Her husband, Mark Kelly, contacted Nancy Helm-Estabrooks, CCC/SLP to help guide the direction of her ongoing rehabilitation to her damaged left hemisphere from the direct gunshot injury, which caused severe apahsia in Gabby.  She has made remarkable progess and speech & language pathologists have been instrumental specialists in her pathway to recovery.  Estabrooks was part of a team of specialists at the Boston Va Hospital back in 1972 when they discovered that a 48 yr. old patient at the VA who had left-hemisphere involvement after a stroke could finally get beyond her restricted ability of using repetitive productions of syllabic strings to mean a variety of intentions.  For example, “ni-ni-ni-na-na-na” could mean a question, or distress if used loudly, or to comment on someone’s fashion that was admired by this 48 year old woman. The team noticed that she could sing every word of the standards played by a pianist. This discovery led them to develop the treatment program called Melodic Intonation Therapy (MIT) after lots of work and trial and error to refine the method.  Gabby Giffords was exposed to this treatment approach early in her rehabilitation.  She was taught to separate words from a familiar tune and attach them to two rhythmically spaced, unassociated notes, while tapping out the syllables with her hand as she “sang” the notes.  For example, phrases with important meaning like “close the door” or “open the window”  or “I feel sick” could get communicated using this melodically intoning method.  Gabby showed great progress using melody and music in her early rehabilitation. In the summer of 2011, Helm-Estabrooks evaluated Gabby at Mark’s home in Texas.  She used a dynamic assessment approach and then hired three experienced speech-language pathologists to directly work with her.  Gabby continued to improve and a secure website was set up so Helm-Estabrooks could read her chart notes and make recommmendations & modifications if needed.  She then hired Marjorie Nicholas, CCC/SLP, a close colleague from Boston who now works at the MGH Institute for Health Professions, to come to Gabby in Texas and work for 70 hours during a 10 day span. Helm-Estabrooks and Marjorie Nicholas have been impressed with the many ways she has progressed across a variety of independent activities. This summer they are planning eight days of very intensive speech & language therapy in the Smoky Mtns. Gabby will receive day-long intensive language therapy.  One thing Helm-Estabrooks cautions about is the erroneous thinking that music therapy ALONE was the treatment that got Gabby to where she is now (some press accountants have intimated).  Her music therapy she received in Texas was also accompanied by lots of good language therapy that keeps up with her current skill level.  According to Helm-Estabrooks, “Gabby is on the road to a very good recovery and this is a testimony to the natural healing of the brain, good medical care, talented CCC/SLPs, OTs & PTs and rehabilitation medicine in general.” She continues, ” The issue, however, is that MOST people DO NOT GET as much therapy as Gabby. In most cases, the insurance of people with aphasia (if diagnosed) dries up quickly.”  Helm-Estabrooks sincerely hopes that Gabby’s progress secondary to all the services she has received, raises public awareness of the need for medical coverage of such services. 

(Some information & quotes taken from The ASHA LEADER, June 2012 issue).

Welcome to my blog

Welcome to my blog. Having been in private practice for 28 years, I am excited to enter the 21st century with my new website and blogging.  I look forward to writing about various topics and interesting happenings in the field of speech and language pathology.