Beyond Skype for Online Therapy: Protecting Student Privacy

Privacy

 

The trend for kids online is sharing more, not less. Today’s kids consciously and unconsciously share so many aspects of their life using Facebook, Skype or even newer tech tools like Snapchat. But, as educators, we hold ourselves to a much higher legal and professional standard for protecting the information of these very same students. We’ve all heard about the laws—FERPA, HIPAA, COPPA— that set the standards for privacy of student records and personally identifiable information, but what do the laws mean in the context of delivering speech-language therapy online?

HIPAA: Protecting Individually Identifiable Health Information

Created by the Department of Health and Human Services in 1996, The Health Insurance Portability and Accountability Act (HIPAA) is a federal law that protects patient medical records. HIPAA specifically protects “individually identifiable health information,” which includes:

  • the individual’s name, address, birth date and Social Security number.
  • the individual’s past, present or future physical or mental health or condition.
  • the provision of health care to the individual.
  • the past, present or future payment for the provision of health care to the individual.

HIPAA gives patients a variety of rights regarding individually identifiable health information. With consent, HIPAA permits the disclosure of health information needed for patient care, such as speech therapy.

FERPA: Protecting Education Records

The Family Educational Rights and Privacy Act (FERPA) is a federal law that protects student education records. FERPA gives parents certain rights with respect to their children’s education records until they turn 18 or transfer to a school higher than the high school level, thus making them “eligible students.” The law applies to all schools that receive funds under an applicable program of the U.S. Department of Education. Under FERPA, parents or eligible students have the right to:

  • Inspect and review the student’s education records.
  • Request a school to correct records they believe to be inaccurate or misleading.
  • Prevent a school from releasing information from the student’s education record without written permission (with some exceptions).

COPPA: Protecting Children’s Personal Information

The Federal Trade Commission instituted COPPA (Children’s Online Privacy Protection Act) in April, 2000 to protect children’s personal information on websites and applications that target children under the age of 13. Under the legislation, websites and apps that collect this information must notify parents directly and get their approval prior to the collection, use or disclosure of a child’s personal information. The FTC describes personal information as:

  • A child’s name, contact information (address, phone number or email address.
  • A child’s physical whereabouts.
  • Photos, videos and audio recordings of the child.
  • A child’s “persistent identifiers,” like IP addresses, that can be used to track a child’s activities over time and across different websites and online services.

Recommendations for Online Therapy

Clinicians and educators often focus on the capabilities of individual pieces of technology, and, indeed, a secure therapy platform is highly recommended both to ensure the privacy of sessions as well as student data. However, it is the information, and the sharing of that information by the adults responsible for the care of each child, that these laws focus on. So educators need to focus on a systems approach that considers the end-to-end process of handling and securing student data.

While clinicians are trained in student identity protection, non-disclosure methods and the maintenance of student record confidentiality, it is ultimately the school’s responsibility to ensure agreements they have in place with online therapy service providers support them in protecting student privacy. So what are the practical considerations in this end-to-end approach to protecting the privacy of students receiving online therapy?

  1. Ask what type of security is in place. Solutions with bank-level security offer the strongest protection of data. This includes 256-bit encryption using TLS 1.0, restricted physical access to the servers on which data is stored, and 24/7 on-site security personnel.
  2. Use a secure platform for therapy. Secure platforms use an invite-only, encrypted, secure connection. In this model, only the online clinician and the student assigned to that particular appointment time are permitted to enter the password-protected “therapy room.” Parents may also view a session with a prior written request.
  3. Use a secure server to store data. Make sure all student files containing individually identifiable health information and education records are stored on a secure server using industry-leading security.
  4. Restrict access. Only online clinicians, authorized school administrators and parents should have access to this password-protected information, thus further protecting student privacy.

This “big picture” thinking will let educators take advantage of new online delivery models for therapy services AND stay compliant with privacy laws. And leave Snapchat to the students.

Melissa Jakubowitz, MA, CCC-SLP, is the Vice President of SLP Clinical Services at PresenceLearning. She is a Board Recognized Specialist in Child Language with more than with more than 20 years of clinical and managerial experience. She is the past-president of the California Speech-Language-Hearing Association and is active in ASHA, serving as a Legislative Counselor for 12 years.

Skyrocketing Autism Numbers a Call to Action for SLPs

1Sky_Rocketing_Autism_Numbers (3)

Last week the child-development community got a jolt from news of a jump in numbers of children diagnosed with autism spectrum disorder: an increase of 30 percent in just two years. One in 68 children had ASD in 2010, up from one in 88 children in 2008, according to data from the U.S. Centers for Disease Control and Prevention.

And that’s raised many questions among speech-language pathologists and other developmental experts. For one thing, what’s driving the increase? And what does it mean for ASD diagnosis and treatment? There are no clear answers or absolutes. But developmental expert Stephen Camarata is willing to speculate. We talked with the Vanderbilt University hearing and speech sciences professor about his take.

What is behind this increase? Is it really just an increase in identification?

There are three main factors. One is a real increase in incidence. Our technological ability to take preemies weighing less than a pound and have them survive has changed, and it’s not surprising that more of these kids might have challenges.
Second, there’s increased awareness, so more people are looking for ASD in kids. And third there’s the expansion of the definition of spectrum. The numbers of kids identified as high functioning and as having Asperger syndrome has skyrocketed.

What do the higher numbers mean for SLPs?

We’re the speaking profession, so we have a central role in assessing and treating these kids. Based on this, we’re obviously seeing a big increase in caseload, which as a field we need to develop ways to handle. But more basically than that, we need to figure out how to differentially diagnose these young kids, these 2-year-olds, distinguishing between ASD and the new DSM-5 [Diagnostic and Statistical Manual of Mental Disorders] category of social communication disorder.

We are the main profession driving identification and treatment of SCD, and we need to develop assessments and interventions in this area. It’s a huge opportunity and a huge challenge—and we need to be prepared to handle this demand.

The study suggests that there is a lag in identification, with most kids diagnosed at 4 and older when they could be diagnosed as early as age 2. What can SLPs do to help get these kids diagnosed earlier?

First I should point out that when the kids in this study were toddlers, in 2004 and 2005, we weren’t yet able to accurately diagnose autism at those young ages. Now, with the toddler module of the Autism Diagnostic Observation Schedule, we can. And given that with ASD comes late onset of speaking, SLPs are often doing the earliest assessments. Right now, we may be less inclined to put a late-speaker in the SCD category because we want to get these kids services but don’t yet have appropriate assessments, treatments or reimbursement for SCD. Our charge is to develop these. And it’s also to it’s also to continue to develop continuing education for our practitioners to diagnose autism, which we can do, typically as part of a team.

The study suggests that kids who are African American and Hispanic are being underdiagnosed relative to white kids—again, what can SLPs be doing to help close this gap?

It should be noted that, if you look at the report, there actually has been a dramatic increase in diagnosis in both those communities. But yes, the rates still lag behind those in white children a great deal, so there’s a need to close this gap. Part of this is an issue of cultural difference, but it’s also the well-known health-disparities story of lack of access to services. So we need to do more outreach and education in the African American and Hispanic communities about early intervention and their entitlement to public services.

What are the implications of these findings for the services SLPs provide to children on the spectrum?

This is my sense: Some SLPs feel like they’re not necessarily the primary interventionists in cases of autism but if a kid’s primary weakness is in the speech and language domain—which is the case in ASD, along with behavior—then they really have the role. Improved speech improves behavior. And parents want their kids to talk, so we are and should be primary clinicians involved in diagnosing and treating ASD.

As we go forward, we need to work on distinguishing SCD from autism. We need to own this, but to do that we need to provide data that make a difference and train others on what we know.

 Learn more about social communication disorders  and autism spectrum disorder on ASHA’s website. More information on both categories is available from ASHA—e-mail Diane Paul, ASHA director of clinical issues in speech-language pathology, at dpaul@asha.org.

Stephen Camarata, PhD, CCC-SLP, is a professor of hearing and speech sciences at the Bill Wilkerson Center at the Vanderbilt University School of Medicine. He is an affiliate of Special Interest Group 1, Language Learning and Education. Contact him at stephen.m.camarata@vanderbilt.edu.

Kid Confidential: The Latest on Treatment of Ear Infections

ear infection

For those of us speech-language pathologists who serve the birth-5 year old population (or have young children of our own), it is always important for us to know the most recent health and safety regulations that can affect our clients/students. Here are the newest regulations regarding the medical treatment of ear infections.

As otitis media affects three out of four children by the age of three, and there is a correlation between chornic otits media and communication delay, it is likely that we as SLPs will treat students with acute or chronic otitis media.  As a result we must understand the American Academy of Pediatrics (AAP) guidelines regarding the medical treatment of this condition.

Although, these regulations were initially released in 2004, it appears there is still much confusion among the medical community and, as a result, a second publication of the same AAP medical regulations for treating otitis media was released in 2013.

The regulations were written in response to antibiotic overuse and resistance in children.  Traditionally children are treated with antibiotics as the first line of defense for acute otitis media.  As there are a number of causes for ear pain, it is crucial that pediatricians firstly make an accurate diagnosis of otitis media prior to administration of antibiotics.  Doctors are urged to diagnose otitis media only when a moderate to severe bulging of the tympanic membrane (i.e. ear drum) is present.  Mild bulging and recent ear pain (i.e. meaning within 48 hours) exhibited along with other signs of ear infection (e.g. fever) also may be diagnosed appropriately.  Therefore, if the pediatrician is unsure of the diagnosis of otitis media he/she is discouraged t to prescribe antiobiotics.

Although pain is present, antibiotics are not necessarily to be considered the first course of action. In fact, in response to ear pain and/or low grade fevers, pain relievers are to be recommended initially as “about 70 percent of kids get better on their own within two or three days, and giving antibiotics when they aren’t necessary can lead to the development of superbugs over time” reports Dr. Richard M. Rosenfield, professor and chairman of otolaryngology at SUNY Downstate Medical Center, Brooklyn.

Antibiotics are only to be prescribed when the child is exhibiting several signs or symptoms of otitis media (e.g. pain, swelling for at least 48 hours, fever above 102.2 degrees Fahrenheit, etc.).  Immediate prescription of antibiotics should be recommended in the event a child’s tympanic membrane ruptures.

Although it is important to understand the medical treatment of otitis media, perhaps it is more important for us to understand the simple preventive measures a parent can take to help avoid the development of ear infections in the first place.  In addition to this medical treatment plan, the guidelines also stress avoidance of tobacco exposure, receiving the influenza vaccination, and breast feeding exclusively for the first 6 months (if possible) as additional ways to prevent infant ear infections.

Medial guidelines for “silent ear infections” (i.e. middle ear fluid without presence of other symptoms typically following acute otitis media or colds) consist of “watchful waiting.”  If a child is diagnosed with “silent ear infections” also known as otitis media with effusion the pediatrician should initially provide no medical treatment.  A follow up reexamination should take place three to six months later.  If fluid persists for more than three months, the pediatrician should recommend a speech/language and hearing assessment.  If middle ear fluid persists more than four months and signs of hearing loss are evident, a pediatrician may recommend placement of PE tubes or refer their patient to an ENT for further assessment.

I very much appreciate the AAP for adding in the guideline of further assessment in the areas of speech/language and hearing if fluid persists longer than three months.  This demonstrates the AAP’s understanding of the important of communication development and the need for a quick resolution to such delays rather than the typical “wait and see” attitude that parents often report to encounter particularly in instances of “late talkers.”  Now we, as SLPs, have guidance and support from the AAP for our clients/students with long-term persistent middle ear fluid.

Please refer to the resources below for further information.

Resources:

Jaslow, R. (2013, February 25). Antibiotics for ear infections: Pediatrician release new guidelinesCBS News.

New guidelines for treating ear infections. (2004). The Harvard Medical School Family Health Guide.

 

Maria Del Duca, M.S. CCC-SLP, is a pediatric speech-language pathologist in southern, Arizona.  She owns a private practice, Communication Station: Speech Therapy, PLLC, and has a speech and language blog under the same name.  Maria received her master’s degree from Bloomsburg University of Pennsylvania.  She has been practicing as an ASHA certified member since 2003 and is an affiliate of Special Interest Group 16, School-Based Issues.  She has experience in various settings such as private practice, hospital and school environments and has practiced speech pathology in NJ, MD, KS and now AZ.  Maria has a passion for early childhood, autism spectrum disorders, rare syndromes, and childhood Apraxia of speech.  For more information, visit her blog or find her on Facebook.

Apps with Elders

elderapps

I am a tech savvy person. Use of technology is integrated into my life, and I am always learning something new. Currently, I am learning basic coding and web design to help private practice owners with their websites. Your website should tell your story and technology can make that happen. Perhaps I was a little naive, but it never occurred to me that maybe I should not use an iPad in my work with my geriatric patients in the SNF setting.

In the SLP social media communities I saw many SLPs using iPads or other tablets with their school or pediatric clinic caseloads. I saw what they were doing and thought, “Hey, I could do that with my patients.” And so I did. A few years ago when I got my CCC’s I gifted an iPad to myself.

And then I started using my iPad in therapy. There were a few bumps along the way, but I am still using it today. The iPad will by no means do therapy for you, but it is an excellent tool.

Five Tips to make using an iPad in therapy easier

Be confident to reduce the intimidation of technology. I start by asking if a patient has used an iPad. Then I briefly explain that it is a “little computer”, and we are going to use it to have a little fun in therapy. I gloss over the technology aspect and go straight to the fun. And then I choose an easy but interesting game, so they will have success when they are learning to use the tablet.

Use a stylus. A stylus is a pen-like instrument that the tablet will recognize similar to a fingertip. I pick them up for super cheap at stores like Marshalls or Ross. Some of the ladies I work with have gorgeously lacquered long fingernails. This almost always causes a problem, since tablets respond to fingertip taps rather than fingernail taps. A stylus will solve this problem.

Make it fun. Some of the games and apps can be quite challenging (just as any other task). When frustration starts to rise, I remind my higher level patients that we are just experimenting. If the solution or answer is not correct, we just figure out why and try something else. This approach seems to ease frustration. With my lower level patients, I do not allow that point of frustration to be reached. I use errorless learning and vanishing cues to increase success rate.

Keep your client relaxed. Because it is an unfamiliar technology there can be some anxiety about using it. I watch my patient’s body language. Is their brow furrowing, are their shoulders creeping up, are they tapping the stylus with great force? Sometimes I use subtle cues to help them improve insight into how they are feeling. Other times overt. These are great moments to talk about the effect of emotions (including anxiety) on cognitive function. Then I teach the strategy of doing something less taxing during these moments and moving back to more challenging tasks when they are feeling calmer.

Get a case. Get a case that allows you to prop up the tablet at different angles. This is really helpful for reducing the glare caused by different patient positions as well as making the tablet more accessible to those with mobility impairments.

Favorite Adult SLP Apps

Memory Match: If you are looking for an app to exercise use of memory strategies (visualization, association, verbalization) then Memory Match might be an app to check out. It’s $0.99 and available for iPad and Android. This is only suitable for clients that are able to generalize memory strategies and need activities to learn strategies.

ThinkFun Apps: Rush Hour and Chocolate Fix are great problem solving brain teaser apps that require use of deductive reasoning and logic for visual tasks. First, we identify the problem. Then, we work backward to solve it.

Tactus Therapy: This company makes some great apps. I have several, but my favorite is Conversation TherAppy. It is so versatile. I seldom use the scoring function of the app. The app has picture stimuli and a variety of prompts to target specific skills. I love not having to carry around a deck of picture cards. Have you dumped a box of stimuli cards on the floor? I have, too many times to count.

Google: Access the Google search engine via Chrome or Safari for endless possibilities. Do you have a client working on word finding tasks and needs a visual cue? Google it. Need a restaurant menu or a prescription label as a stimulus for functional questions? Google it. And I’ve been known to use it as a task motivator. Do your dysphagia exercises, then we’ll look up information about moose. (True story.)

Dropbox: Scan those 3-inch binders full of worksheets, protocols, and other information. Create PDFs and put them into Dropbox and have them anywhere you go with your iPad.  If you buy digital versions of books or tests to use on your iPad you will resolve the problem of original documents getting raggedy.

If you have an iPad or another tablet at home and haven’t used it for therapy, I recommend checking out what it can do. You might be pleasantly surprised.

Rachel Wynn, MS CCC-SLP, is speech-language pathologist specializing in geriatric care. She blogs at Gray Matter Therapy, which strives to provide information about geriatric care including functional treatment ideas, recent research, and ethical care. Rachel’s projects include: Gray Matter Therapy newsletter, Research Tuesday, and Patient Education Handouts. Find her on FacebookTwitter, or hiking with her dog in Boulder, Colo.

Just Breathe. Really?

breathing

Easy for you and me to say.  But for 7.1 million U.S. school children it’s not. Childhood asthma rates continue to rise and from 2001 through 2009 those rates were the highest for African American children, almost a 50 percent increase. Asthma accounts for 10.5 million school absences each year. The main trigger of asthma in school children are the same contributors to poor indoor air quality. Yeah, that’s right … open a window.

Air is mostly composed of nitrogen (78 percent) and oxygen (20 percent), air also has about 1 percent of water vapor and tiny amounts of argon and other gases.  For most of us, air quietly passes through our nasal passages into our lungs and out again; taking in the oxygen needed for our blood supply during inhalation and disposing the carbon dioxide by-product during exhalation.  We do this without thought, without effort–unless you are a child with asthma.

Asthma is a chronic lung disease characterized by inflammation of the airways. Recurring symptoms include wheezing, shortness of breath, chest tightness, and coughing.  Asthma develops in childhood as early as 6 months of age and lasts a lifetime.  About one in 12 Americans are living with asthma and over one third of them are children. In adults women are more likely than men to have asthma and more boys than girls among children. Those with asthma pay a huge price, about $3,000 per year per person to be exact. This figure includes medical care, medications, lost work/school days and deaths.

Various triggers not easily controlled can cause an asthma attack such as changes in weather. However, there are other triggers that can be controlled such as the presence of dust mites, roaches, pets, and mold affecting indoor air quality.  Asthma is particularly more prevalent to those living in poor neighborhoods.  A recent episode of NBC Dateline revealed that the childhood asthma rates in East Harlem run at 19 percent compared to the adjoining Upper East Side neighborhood at 7 percent.  They breathe the same New York City air, so what accounts for the difference?

Water leaks, pest infestation and general contract repairs are the responsibility of a rental unit’s landlord. As economically disadvantaged families tend to reside in these units, they are at the mercy of their landlord. Water damage leads to mold; pest infestation carries allergens; both of these conditions create a significant trigger for asthma in children. Even a child without an asthma history may become asthmatic as a result of repeated and chronic exposure to such poor indoor air quality.

School absences are of particular concern; children who miss more than 18 school days are year are more likely to drop out of school. Children with asthma miss more days of school due to their disease compared to children without asthma.  The number of missed days rises with severity—on average a child with severe and persistent symptoms misses 11.5 days of school in a year.  That’s a lot of missed homework and make up speech sessions. Asthma also affects a child’s sleep quality, which in turn affects a child’s ability to pay attention in class and lowers their quality school work.

 What can you do? 

  • Know which children on your caseload have asthma and know how to deal with an asthma emergency, including the location of the child’s inhaler.
  • Take a look at your therapy treatment room or classroom. Are the floors hard wood or are they carpeted?  If hard wood, hooray! If carpeted, make sure they get vacuumed every day and shampooed at the end of the school week.
  • Got pets? If there are in your classroom, better to send them to another home. Animals carry dander that can trigger asthma. If you have a pet at home, make sure your work wardrobe is free of pet hair.
  • Are you working out of a trailer or portable classroom?  These type of environments generally trap moisture than can turn into nasty mold. Make sure spills and leaks are taken care of quickly.
  • Skip the perfume spritz and after shave before leaving the house for work. Fragrances can trigger an asthma episode.
  •  Refrain from fuzzy or scented materials, pillows or upholstered furniture; these can collect dust mites, which are (surprise!) asthma triggers. If the furniture must stay, vacuum it frequently.
  • No clutter!  Cockroaches and dust mites love clutter … and produce more asthma triggers.
  • If your room has a window that faces high volume vehicular traffic, keep it closed during the vulnerable morning hours and cold temperatures.
  • Stay away from phthalate-based toys  as phthalates are known triggers for asthma.
  • Don’t use pesticide sprays in your room.  Go for integrated pest management strategies instead.
  • Like team work?  Collaborate with your school nurse and district’s administration to develop an asthma management plan at your school if one does not exist.  Another excellent resource is to adopt ideas from the IAQ Tools for Schools Action Kit.  Work with your district’s transportation department to monitor school bus engine exhaust near open windows.

 

Although asthma is prevalent, with some forethought and preventive measures, it can be controlled. Now breathe a sigh of relief!

Anastasia Antoniadis is with the Tuscarora (PA) Intermediate Unit and works as a state consultant for Early Intervention Technical Assistance through the Pennsylvania Training and Technical Assistance Network. She earned a Master of Arts degree in speech pathology from City College of the City University of New York and a Master’s degree in public health from Temple University. She was a practicing pediatric SLP for 14 years before becoming an early childhood consultant for Pennsylvania’s early intervention system. Her public health studies have been in the area of environmental health and data mapping using geographic information system technology.  You can follow her on Twitter @SLPS4HlthySchools. 

 

 

 

Baby Led Weaning: A Developmental Perspective

blw

One of the things I like best about teaching courses on feeding to parents and professionals around the United States is learning what new trends are evolving around family mealtimes. Over the past year,  one of the common questions I’m asked is, “What about Baby Led Weaning?”

Baby Led Weaning (BLW) is a term coined by Ms. Gill Rapley, co-author of “Baby-led Weaning: The Essential Guide to Introducing Solid Foods.”  Rapley graciously chatted with me about her philosophy and explained that although she did not invent BLW, she found the method to be successful in her work as a former health visitor and midwife in the United Kingdom and continues to study the topic today while earning her PhD.

In a nutshell, BLW centers on the philosophy that babies are developmentally capable of reaching for food and putting it in their mouths at about 6 months of age. As stated on the BLW website “You just hand them the food in a suitably-sized piece and if they like it they eat it and if they don’t they won’t.”  Please note that the word “wean” is not referring to weaning from breast or bottle, but instead refers to a term commonly used in the United Kingdom for adding complementary foods to the baby’s current diet of breast milk or formula.  According to the BLW website, ideas for first foods include “chip size” steamed vegetables such as a broccoli spear with the stem as a handle, roasted potato wedges, meat in large enough pieces for the baby to grasp and chew, rice cakes, cucumber, celery and dried apricots.

As a SLP who focuses on pediatric feeding, I view feeding as a developmental process.  Whether I’m working with a child experiencing delays in development or offering advice to a parent whose child is meeting milestones with ease, I always ask myself “How can I respect and support this family’s mealtime culture while guiding this child safely through the developmental course of learning to eat?”  Thus, for families who are interested in following the BLW method, whether their child is in feeding therapy or not, I try to support their wishes if the child is capable,  while offering the following BLW points to consider:

BLW encourages parents to eat with their children, since everyone is eating the same food. 

In today’s busy culture, it feels easier to many parents to feed the baby prior to the adult or family meal, and in BLW the thought is that jarred purees contribute to this habit and it’s important to include baby at the table at an early age.  Even in feeding therapy,  the ultimate goal is for families to be able to gather around the table at mealtimes with everyone enjoying the same foods.  Plus, Columbia University reports that consistent family dinners are an integral and valuable part of raising children.

BLW emphasizes that babies must be the ones to put the food in their mouths.

Feeding therapists encourage self-feeding  for all kids because it allows them to get messy.  Babies are programmed to explore the world with all of their senses, especially their hands and mouths, and often the two together!  BLW notes that the time to begin self-feeding is at 6 months when baby can sit upright on his/her own. I explain to parents that first, every child must have the gross motor stability to support fine motor skills, including reaching and raking for food and controlling their grasp to bring the food to the mouth to be chewed.  For children who have this capability, I feel comfortable with large pieces of food that will not snap off (or allow a solid chunk to fall into the mouth) in addition to short spoons and chewable toys for practicing the skills that will eventually lead to self-feeding.

BLW follows the baby’s cues rather than the parent controlling the feeding via the spoon.

I explain that whether presenting food to your child by placing it on the high chair tray in front of them, directly on a spoon or even mouth to mouth as done in some cultures, reading baby’s cues for readiness is crucial.  Like a beautiful, flowing conversation, feeding children is a reciprocal experience.

According to the BLW blog, BLW introduces chip-size foods (rather than purees or mashed foods) so that baby learns to chew first and then spit out if unable to swallow, noting that with purees on a spoon, babies learn to swallow first and then chew.

From a developmental perspective,  this doesn’t quite fit with my understanding of how infant reflexes integrate  and babies acquire oral motor skills. Babies can begin the process of BOTH spoon and finger feeding between the ages of 5 and 6 months using both purees and soft, safe foods.  Why?  Because this is when babies acquire better lip control and movement as they suck the puree off of a parent’s finger, their own hands or a spoon.  As noted in Diane Bahr’s book “Nobody Ever Told Me (or My Mother) That!” this is when babies use their rhythmic bite reflex to bite off soft pieces of safe, soft or meltable foods that they can hold in their tiny fists or when presented by a parent to their open mouths. If the food is placed onto the gums where we will one day see molars, a rotary chew pattern will begin to emerge over time, thanks to reflexive patterns that soon become purposeful movements.  It’s a developmental process and BOTH purees and finger feeding facilitate the progression of skills. It makes sense to me to transition gradually from thinner  liquids (breast milk/formula) to thicker (thus, a smooth puree) to consistently mashed or chopped  while introducing soft meltables over time.  Keep in mind that I also encounter families who are moving too slowly through graduation of textures, as noted in this article by Bahr.  But, jumping straight to only large pieces of foods to be chewed and then either swallowed or spit out feels like skipping crucial steps in the developmental process.  “Feels like” is the key phrase here: We need research to determine if children who follow this model eventually acquire skills traditionally learned prior to chewing chunks of food as listed in this article found in ASHA Perspectives.  Unlike my previous post on sippy cups, where therapists have raised concerns based on their professional experience over several years and observation of prolonged sippy cup use,  consistent BLW practices are a relatively new phenomenon in the United States.  So, when any parent asks “What about Baby Led Weaning?” I try to integrate my own practitioner expertise and knowledge of feeding development while honoring the family’s preferences and mealtime culture.  Still,  my biggest concern for any 6 month old child is choking.

BLW encourages parents to become comfortable with gagging episodes and understand the difference between gagging and choking. 

Gagging versus choking are two different experiences.  Typically, an infant’s gag reflex is triggered when the back three quarters of the tongue is stimulated, but by the time a child reaches  9 months of age, the reflex covers less area, lying on the back third of the tongue. Eventually, the gag reflex shifts posteriorly even more as the child learns to tolerate the stimulation. Gagging is nature’s way of protecting the airway, where true choking occurs.  Choking happens when food (or other substances) obstruct the airway and thus, often has no sound or intermittent, odd sounds.  Other signs of choking include but are not limited to: gasping for breath, turning blue around the lips and beneath the eyes and/or staring with an open mouth while drooling.

Gagging is an uncomfortable sensation where the soft palate suddenly elevates, the jaw thrusts forward and down, and the back of the tongue lifts up and forward.  It is not unusual for a child to vomit after gagging.  In between the gags, the child is still able to breathe, cry and make vocal noises.  The occasional gag is an important built-in safety mechanism, but frequent gags and/or vomiting can lead to an aversion to food.

In summary, when asked for advice from any family that would like to follow Baby Led Weaning principles, I stress the importance of reading baby’s cues and monitoring them closely for safe feeding while supporting them through the developmental process of learning to eat, no matter what age.  This includes proper positioning in the feeding chair for optimal stability and presenting only manageable pieces of safe, meltable and/or solid foods that do not pose a choking hazard.  For children in feeding therapy, incorporating some aspects of BLW is dependent on that child’s individual delays or challenges and where they are in the developmental process, regardless of chronological age.  My primary concern for any child is safety – be aware and be informed, while respecting each family’s mealtime culture.

Melanie Potock, MA, CCC-SLP, treats children birth to teens who have difficulty eating.  She is the author of Happy Mealtimes with Happy Kids and the producer of the award-winning kids’ CD Dancing in the Kitchen: Songs that Celebrate the Joy of Food!  Melanie’s two-day course on pediatric feeding is  offered for ASHA CEUs and includes both her book and CD for each attendee.  She can be reached at Melanie@mymunchbug.com.

NIMTR: Not In My Treatment Room!

poison

You’ve heard of NIMBY, “not-in-my-backyard” haven’t you?  Well there’s a new acronym, NIMTR or “not-in-my-therapy-treatment-room!”  Speech-language pathologists are inundated by catalogs filled with wonderful colorful, fragrant, pliable toys as treatment materials.  We use these every day with our students, our clients in clinics, our bedside patients.  But how much do we really know about the safety and makeup of those therapy materials your shrinking budget dollars are purchasing every year?

Some interesting facts about toys.

Toys are BIG business. Just visit any mall in America or website such as Amazon.com.  Worldwide, over 80 billion dollars were spent on toys in 2009, with more than a quarter of that money consumed in the United States. The latest figures by the Toy Industry Association Inc., places the annual U.S. domestic toy market at $22 billion in 2012.  Of this, $6.63 billion covers toys and articles for infants and toddlers, puzzles and games, and arts and crafts.  I mention these specific categories because they are materials most likely to be used by SLPs working with young children in early intervention, preschool, or school settings.

So many toys … but are they safe?

The United States imports many more toys from foreign countries compared to its exports. China, Japan, Mexico, Canada and Denmark lead the way in toy imports.  Since other countries do not implement the same environmental protections in manufacturing as we do in the states, the question of safety looms large.  The Consumer Product Safety Commission (CPSC) is the main body responsible for overseeing the safety and recall of unsafe toys and products manufactured in or imported into the United States.  In 2012, the CPSC released a new risk assessment tool to help improve the screening of imported products. About 5 percent of the total number of these screenings identified children’s products.  One example: a shipment of 28,000 baby bottles imported by Dollar Tree was seized after determining they were defective and unsafe using the new risk assessment tool. You can read more about the successes of CPSC online.

The Consumer Product Safety Improvement Act of 2008 made it mandatory for all toys aimed at children under the age of 14 to meet new federal safety standards.  Some of these include testing lead content and concentration of phthalates (DEHP, DBP and BBP* in particular). Here is a video to see how CPSC works collaboratively with other government agencies to seize toy imports that are unsafe for children.

Even though we have protections, toys of questionable safety continue to enter the consumer market.  Recently DNAinfo in New York released this alarming report, which shows many toys in stores tested positive for elevated levels of toxic substances, including phthalates, which have been found to be associated with asthma, birth defects and hormone disruption, among other health problems. One item on the list, a Teenage Mutant Ninja Turtles pencil case manufactured by Innovative Design was found to contain 150 times the legal phthalate limit for toys. But alas, currently, it does not qualify as a toy under federal regulations.

What if it is not a toy?

And that’s a good point: Sometimes SLPs use materials in their practice that are not toys. Like the pencil case mentioned above or what about commonly used rubber tubing that a speech-language pathologist may use during treatment for oral exercises?  Would such rubber tubing be considered a toy, a medical device, or something else?  Who oversees the safety of products such as these?

Two organizations responsible for developing standards of safety are the International Organization for Standardization (ISO) in Switzerland and the American Society for Testing and Materials International  based in Pennsylvania.  Both provide standards to industries that produce just about everything, from iron bolts to bathmats.  Each provides standards for purchase to companies, who in turn use the standards to manufacture and distribute their product to specification.  I contacted both these organizations to find what standards exist for the rubber tubing example.  As of this writing, no responses to my request have been received.

What is an SLP to do?

So what can you do to ensure that the materials you use with your students and clients are safe?  Here are a few suggestions:

  1. If you are purchasing from a distributor online, check their website for more information. For example, SuperDuper Publications places a Product Safety statement on their website and invites customers to email them for more information.  Companies who openly provide statements such as these make it easier for the consumer to trust the safety of their purchases.  If you cannot find information on product safety or product testing, email the company and ask for it.
  2. Check the CPSC’s website for toy and product recalls. You can find the latest recalls, search for recalls by product name or by country of manufacture, and also report an unsafe product.
  3. Read the manual! Electronics such as iPads and tablets come with a manual that will often provide the ISO or ASTM Int’l standard used to insure safety and will list potential hazards.
  4. Contact the manufacturer of the product and ask for the MSDS – materials safety data sheet.  This would be a good choice if the product you have or consider purchasing lacks a manual or an information sheet on standards testing.  You also can look up a product by name and manufacturer on the MSDS website. On this site a search for “rubber tube” gave me 34 hits.  While searches can be daunting and time consuming, the insurance of safety provides peace of mind to you and the clients on your caseload.
  5. Avoid buying inexpensive toys or materials from questionable sources such as street vendors.

Informed SLPs can now approach their materials purchases with a new savvy.  Next time you are tempted to buy inexpensive therapy materials composed of questionable ingredients, just say “NIMTR”!!!!

 

Anastasia Antoniadis is with the Tuscarora (PA) Intermediate Unit and works as a state consultant for Early Intervention Technical Assistance through the Pennsylvania Training and Technical Assistance Network. She earned a Master of Arts degree in speech pathology from City College of the City University of New York and a Master’s degree in public health from Temple University. She was a practicing pediatric SLP for 14 years before becoming an early childhood consultant for Pennsylvania’s early intervention system. Her public health studies have been in the area of environmental health and data mapping using geographic information system technology.  You can follow her on Twitter @SLPS4HlthySchools.

Aphasia: How a Video IS Worth a Thousand Words

 

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I have been a practicing speech-language pathologist for the past 40 years. My last position prior to my retirement in September of this year was as an out-patient SLP at Virginia Commonwealth University Health System (VCUHS) rehab clinic working primarily with stroke and head injury patients. Ours is a rewarding profession but during the past year and a half my involvement in a community aphasia support group has been one of the most gratifying experiences of my career.

Approximately two years ago, the daughter of a stroke survivor contacted VCUHS Speech/Language Pathology Department asking for volunteers to help her start an aphasia support group in Richmond, Va. She indicated that she wanted to form the support group to provide her mother and others living with aphasia the opportunity to exchange information, opinions, and feelings about this communication disorder.

The first group meeting was held in February 2012. The discussions during the monthly meetings often focused on how little the general public knew about aphasia. Other recurring topics included: loss of insurance coverage for out-patient speech treatment due to “plateau in skills” or insurance caps; false assumption that loss of language means loss of intellect; family members and others lacking appreciation of what it is like to have a head full of thoughts and ideas but not be able to communicate these thoughts to others. One of the group members, a corporate trainer prior to his stroke and subsequent aphasia, had an idea about how to address these problems/misconceptions: He proposed making a video that recorded the personal narratives of group members to educate healthcare professionals as well as their own families and friends on the daily challenges of living with aphasia and strategies for being a good communication partner. He and other group members felt that who best to advocate for aphasia patients than those living with aphasia themselves?

This past year, Marcia Robbins and Kate Schmick (two other SLPs who volunteer with the group), Jan Thomas (support group member who has taken a leadership role in the group), and I applied for and received funding through the VCUHS Speech/Language Pathology Department to produce a documentary style video on living with aphasia. Eric Futterman, a Richmond-based videographer, filmed and narrated scenes of aphasia support group members going through their daily routines and one member interacting with SLP. The 18-minute video highlighted the fact that those living with aphasia were not a homogenous group but rather individuals with unique needs and challenges as they faced the difficult road to recovery from their stroke. The video also showed support group members getting on with living and finding new talents. Our group had a community premier of the video entitled “Patience, Listening and Communicating with Aphasia Patients” during our September, 2013 monthly support group meeting. 90 people from the community attended. Attendees remarked on the powerful and informative message of the film.

In an effort to spread the word about aphasia, we have contacted the National Stroke Association and the National Aphasia Association about posting this video on their websites. NSA already has posted the video on their website.

Susan Hapala, M.Ed.,CCC-SLP, is a retired speech-language pathologist who volunteers with the Richmond, Virginia Aphasia Support Group. She can be reached at rva.aphasia@gmail.com.

All I Want for Christmas is My G-Tube Out!

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A Parent’s Expectations and an SLP’s Goals

As a pediatric SLP who focuses on feeding, I guide families through the process of transitioning from g-tube feedings to 100% oral feeds and ultimately, removal of the g-tube.  This year, I had the unique experience of learning more about the emotional process through the eyes of one mom who happened to be an SLP, too.  In the course of nine months of feeding therapy,  her daughter Payton has taught us both that goals and expectations aren’t always met on the SLP’s or parent’s timeline and that most importantly, the child sets the pace.  Payton’s mom graciously shared her thoughts on the process:

History: Payton was born in December 2012 at 38 weeks, 4 days and weighed 4 lbs., 13 oz..  One month  later, Payton was hospitalized due to congestion, but it soon became apparent that this was a more serious matter.  On January 9th, surgeons performed a Ladd’s procedure to repair a malrotation of the stomach and intestines, a Nissen fundoplication to control reflux and secondary aspiration, removed her appendix, repaired a hernia and placed the g-tube.

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Melanie: When I first met you in March 2013, your family and of course, Payton, had been through so much!  What did that feel like, knowing that she needed surgery and consequently, a g-tube? 

Payton’s Mom: This was my baby; my flesh and blood. I was so mad, sad, overwhelmed, devastated, in denial, and didn’t want any of this to happen. There had to be another option, another way to make her better. My child was not going to eat through a tube and I was going to do all that I could to get that thing out as soon as I could.  I was SO mad and devastated that this had to happen to MY baby.  It felt to us that when she was in the hospital, that the goal was to “fix” her and then we were sent home (feeling totally alone and shattered) to cope with all that we needed to get her to grow and thrive.  Short and long term goals were not clearly communicated to us.  In the back of my mind I knew that this would be a long journey, but I didn’t exactly know how long or what it would entail and I wanted to know NOW! Everyone in the hospital kept telling me that Payton would do this at her own pace (“Payton’s Pace”) but I didn’t want to wait. I wanted my baby better now!

Melanie: We have often talked about the difference between setting goals and setting expectations.  Your journey with Payton has helped me to have a better understanding of the difference.  Goals are targets or objectives.  Expectations feel more passionate and focus on hope, anticipation and personal beliefs.

Payton’s Mom:  As an SLP, I set goals and benchmarks all the time. There is a target behavior you want your client to meet and you set reasonable, attainable steps to get there over a specific, realistic time period.

As a parent, when you have a child with any challenge, you have expectations for them that are based on your emotions, including sadness, anger, denial and/or hope.  From the beginning of our journey, I remember having the expectation that Payton would eat a normal birthday cake and drink milk from a cup on her 1st birthday. Even though Payton just had a feeding tube placed and we were not sure when she would be eating orally again, I still had this expectation.

Melanie: I remember that so well!  I asked you what I ask every parent in feeding therapy: “Tell me what you want for your child” and you answered “I want her to eat birthday cake on her first birthday” and then, you stated it clearly to me once again, just to ensure that I understood.  “She’s GOING to eat BIRTHDAY CAKE on her FIRST birthday” and you had tears in your eyes.  That was a big lesson for me – you’ve taught me so much.  Expectations are very emotional. 

Payton’s Mom: I also had other expectations: that she would be running the hallways of the hospital on the week of her first birthday and say hello to the doctors who treated her!  When I stated these expectations, I knew in the back of my mind that it was unfair to myself and especially to Payton to expect this, because if she couldn’t do it, then would I feel guilty, disappointed, angry and upset that the therapists and doctors didn’t do their job right, or that I wasn’t doing my job.  It was all based on my hope for her to be “normal” and desperately wanting all the emotions of sadness and anger to go away after this difficult journey

Melanie: Is there anything else you feel would be helpful for parents and therapists to understand?

Payton’s Mom: Most importantly, follow your instinct as a parent. I truly believe that following my instinct saved Payton’s life.  A parent should trust that feeling inside of them and advocate for their child as they know them best. The opinions of doctors and therapists should be respected as they are knowledgeable and experienced;  however as the parent you go through life with your child all day, every day and it’s important to communicate and discuss the issues  with the doctors and therapists. Come to an agreement what is reasonable and feasible for your child and family. Sometimes when doctors and therapists are not on the same timetable as you it “gets in the way” of your expectations as a parent. A lot of time is spaced between appointments and as a family, life goes on. Another lesson is to pick your team well. When you have a child who works with many different specialists, it’s important that you work well with them as a family and that your child responds positively to them. There are many options when it comes to professionals and you don’t have to work with who was assigned to you, specifically in the hospital, if you do not communicate well with them, agree with their overall philosophy, or feel that there is mutual respect in the relationship.  Lastly, I have learned to respect my child’s pace of development and progress. Getting your child the therapy they need and following through with the  recommendations from doctors and therapists is essential, but that doesn’t necessarily mean they are going to meet the goals and expectations for them on your timeline. I have tried to remind myself when things get tough/or my expectations are not met that this is “Payton’s Pace.” She is her own being who will determine what she does and when she does it.

Melanie:  Yes, she sets the pace.  So, we don’t know if she’ll get her tube out at Christmas.  What’s  most important is what a fantastic year this has been for her and for Team Payton!   Plus,  this is her birthday month!  She’ll have cake and something delicious to drink from a cup.  Probably a purple cup … because she loves purple.  Happy Birthday, Payton!

Payton-One-Year-Old2

Melanie Potock, MA, CCC-SLP, treats children birth to teens who have difficulty eating.  She is the author of Happy Mealtimes with Happy Kids and the producer of the award-winning kids’ CD Dancing in the Kitchen: Songs that Celebrate the Joy of Food!  Melanie’s two-day course on pediatric feeding is  offered for ASHA CEUs and includes both her book and CD for each attendee.  She can be reached at Melanie@mymunchbug.com.

Handling Verbally Disruptive Behavior in Patients With Dementia

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Verbal behavior that others consider disruptive is common in later-stage dementia. This behavior can range from a man who follows his nurse around asking repetitive questions, to the woman who sits in her chair and screams loudly for no apparent reason, to the man who lies curled up in bed, moaning softly through the night.

And there are many other variations on these themes. It has been estimated that 25 percent of those with dementia who still live in the community, and 50 percent of those who reside in long-term care facilities, exhibit this type of behavior at any given time. As many as 90 percent of those with dementia will demonstrate such behaviors at some point.

There are a number of different types of dementia-producing illnesses that can lead to screaming and other verbally disruptive behaviors. These include Alzheimer’s type dementias, vascular, Lewy Body, and frontotemporal, as well as the less common prion diseases, metabolic imbalances, and other degenerative conditions. Disinhibited behaviors are often associated with frontotemporal dementia, but they can be due to other diseases as well.

Often, sadly, the typical response to these disruptive individuals is to administer some medication intended to calm the person and make the behavior more manageable. However, in most cases there are non-pharmaceutical interventions that not only work much better, but also produce fewer side effects. I have heard it said that up to 95 percent of behaviors in people with dementia are actually a form of communication. When one considers the loss of verbal language production that inevitably occurs in dementia’s latter stages, it is no surprise that people with this disease resort to whatever means they can to communicate with the outside world.

The messages they seek to convey tend to fall into a few common categories: 1.) “I’m in pain,” 2.) “I’m lonely/frightened/bored,” 3.) “I don’t want to be here,” and 4.) “I need/want something.” At times, it is readily apparent what the person is trying to say. But, more often than not, the person’s caregivers need to do a little detective work to decipher the meaning behind the verbal outburst.

When I work with a nursing home resident with dementia and  consistently problematic behavior, I first attempt to define the behavior more clearly. What exactly does the resident do? What times of day does this occur? Are there any other events and circumstances associated with the behavior—occurring immediately before or after the behavior, for instance? What else is going on in the environment? It is also helpful to know what interventions have been attempted in the past for dealing with the behavior, and whether these interventions have proven at all beneficial. I try to learn as much as I can about the resident’s medical, family and occupational history. It is important to remember that this verbal agitation or disruption is a symptom and not a disease or condition in itself.

Pain, often related to conditions such as arthritis, compression fractures, limb contracture, and constipation, is responsible for perhaps as much as 50 percent of verbal disruptions. Because people with advanced dementia may lose the ability to ask for pain relief, administering a daily maintenance dose of Tylenol or a similar medication can be helpful.

In addition, I recommend doing the following to assess what might be causing discomfort:

  • Conduct a physical evaluation. Has the resident recently been placed on a new medication, or taken off one? Is there any sign of infection, injury or other medical issues? Is there pain related to arthritis, a toothache, constipation, etc.? Is the resident hungry or thirsty or in need of a change in bedding?
  • Survey the person’s environment to determine if any changes may have prompted the behavior. This could be a change in the routine, a new caregiver or a new roommate. Perhaps the hustle and bustle of getting the unit ready for Christmas is too much for the person to handle. Has there been an upsetting visit from a family member? (Also be aware that understimulation can be just as problematic.)
  • Assess the caregivers in this particular situation. Caregivers, both professionals in long-term care facilities, and family members in a home environment, are subject to a great deal of stress. This stress may not be directly related to the situation at hand. It could be that a nurse has had to place her own husband in the hospital, or has just learned that a son is having trouble in school. And if the caregiver is feeling stressed, it is likely that her charges will pick up on this as well.

Any form of intervention ultimately depends on the cause of the outburst.  Treating acute medical issues—and addressing dehydration or hunger—should take precedence over anything else.  Next,  consider environmental modifications, such as using softer lighting or music, establishing a routine that can provide a calming influence, and so on.

Music is associated with reduced agitated behavior, especially during bathing or meals. Light physical exercise can prove to be a pleasant distraction for the person. Other possible interventions can include pet therapy, massage, white noise, photographs of family or familiar people and places, and attention to any personal needs the person may have.

If you’ve tried all these strategies, and the person with dementia continues to be disruptive, possibly posing a risk of self harm or harm to others, then antidepressants, mood stabilizers and antipsychotic agents may provide some benefit. But, given that the side effects can be severe, opt for such agents only after careful consultation with the person’s physician and family.

Jami L. Hede, MS, CCC-SLP, is a private practitioner and affiliate of  ASHA Special Interest Group 15, Gerontology. This post was adapted from her blog, “Exploring Dementia.”