Monthly Archives: November 2019

What does it mean to become an advocate for my child on multi-disciplinary teams?

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This month’s ASAT feature comes to us from Heyde Ramirez, MA, BCBA, LBA and Maria Pantelides, MA, BCBA, LBA. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook! You can read more of our ASAT featured posts here.

My 3-year-old daughter demonstrates symptoms of ASD and a diagnosis is pending.  I am encountering an array of professionals and am wondering who does what and how I can better understand these relationships while advocating for my daughter. 

Answered by Heyde Ramirez, MA, BCBA, LBA and Maria Pantelides, MA, BCBA, LBA

Attentive Behavior Care

Note: This article has been adapted with permission from Attentive Behavior Care and the authors and will be published in the December 2019 issue of Science in Autism Treatment, the monthly publication of the Association for Science in Autism Treatment.

The definition of the word advocate is to speak, plead, or argue in favor of. When you have a child with special needs, one of the biggest roles you will ever undertake is that of being your child’s advocate. As an advocate, you are your daughter’s voice to make sure she is treated fairly, recognized, and afforded access to evidence-based practices, as well as all the services and resources she needs in order to reach her full potential. Naturally, a parent is often the most important advocate although a child can have multiple advocates: for example, a lawyer or another family member.

Things You Should Know

Early intensive intervention will provide your daughter with a path to making the most gains. It will be important that intervention starts as soon as possible following a diagnosis, and is carried out by individuals who utilize best practices based on research.

Be prepared to present facts and documentation in support of getting your daughter’s needs met. It is important that you ask many questions, listen to the answers closely, and take lots of notes. Save all emails so you can refer back to them in the future and have a record of the communications regarding your daughter’s service provision.

It is also important that you know your child’s rights. The disability and mental health systems are complex. Having a knowledgeable “advocate” to assist you can be an invaluable support. Talk to other parents who have walked this path before you so you can learn from their experiences. Each state has their own set of laws and regulations, so it could be helpful to hire a lawyer if needed.

In your journey, you and your daughter will encounter an array of professionals:

Medical Providers

Medical providers will be your go-to resource when it comes to making sure that your child’s medical needs are met. They were probably your first contact, especially since your daughter is not yet in school.  Your child’s medical team may include several types of medical doctors.

Pediatrician/Primary Care Doctor: The pediatrician will oversee and manage your daughter’s health needs and monitor her development. At check-up visits, talk to the pediatrician about your concerns. Remember that your medical providers rely on the information you report.

Keep your pediatrician apprised of progress your daughter is making and any areas where you continue to have concerns.

Pediatric Dentist: The pediatric dentist has been trained to treat children from birth to adolescence. Dental visits can be difficult if your child has autism. Fill in the dentist on your daughter’s needs. Nowadays there are many pediatric dental clinics available that are willing to follow through with behavior intervention plans and work with you to make the dental visit less stressful for your daughter. Ask your pediatrician for a referral or talk with other parents who are happy with their dental care providers (please see a recently published resource list from ASAT).

Psychiatrist/Psychologist: If your daughter demonstrates various symptoms not related to an ASD diagnosis, then contact with a psychiatrist or psychologist would be beneficial. Other diagnoses can be extremely important when it comes to receiving the necessary individualized treatments which may include medication. In some cases, assessment is carried out by a psychologist who typically holds a PhD or a PsyD rather than a medical degree. A psychologist could provide counseling or behavioral treatment for behaviors that occur.

As an advocate for your child, you can seek out a comprehensive psychiatric/psychological evaluation for your child. These evaluations provide important information that should be shared with the entire team. The information provided can include, but is not limited to, direct observations, parental reports, autism diagnostic testing results, IQ testing results, findings from measures of adaptive behavior, other potential diagnoses, and recommendations for treatment. If anything you read is not clear or seems inaccurate, be sure to ask questions.

The School Team

Children spend a large portion of their lives learning, sharing meals, and socializing in school, and teachers, teacher’s assistants, and other school staff will get to know your child on an individual and personal level. The school team will quickly learn about how your child functions in school and what goals might be needed to ensure her success in school. If your daughter were to be diagnosed with ASD, you will likely meet with the school team several times a year at parent-teacher conferences and other meetings such as Individualized Education Plan (IEP) meetings.

Federal law provides for procedural safeguards to ensure your child receives the supports and accommodations needed to help her make progress and work towards her potential. If you feel that your daughter is not making progress or that the school is not meeting her needs, speak up and ask questions! Include related documentation to support or convey your concerns.

Special Education Teacher/General Education Teacher: Depending on the needs of your daughter and what type of classroom she is in, she may receive instruction from a special education teacher and/or a general education teacher. Special education teachers are trained to work with students who present with various disabilities. In general, teachers make themselves formally available to discuss academic growth at least twice a year at parent-teacher conferences. When you have questions or concerns about your daughter’s academic or social progress at school, request extra meetings with teachers or the school team.  If there are barriers in place that are slowing progress, the teacher can work with you and the team in order to address those barriers.

Teacher’s Assistants and Aides (Paraprofessionals): It’s possible for your daughter to have multiple teacher’s aides in the classroom. Their role is to assist the teacher in maintaining a safe and effective teaching environment. They may implement the education and behavior intervention plans developed for your child and/or other accommodations made so that your daughter has the appropriate support to work towards mastery of the goals on her IEP. There can be limitations on what exactly the teacher’s aide can do and this can vary by state. For example, in New York, a teacher’s aide with a teaching assistant certificate is allowed to provide direct instruction to students under the supervision of the certified teacher. You can request that the teacher’s aides also be present during team meetings. They will also know your child very well and may be able to provide additional information on how your daughter is doing.

Related Service Providers

If your child has an Individualized Education Plan (IEP) there is a chance she has a team that includes various therapists such as speech/language, occupational, and physical therapists. In some states, a prescription is necessary to receive a related service, such as occupational therapy. Keep the pediatrician up to date on the information you receive from related service providers.

Speech/Language Pathologists: Speech language pathologists (SLP) are trained to prevent, assess, diagnose, and treat speech, language, and communication disorders in children and adults. Many have also received training to address feeding issues. Whether your child is non-vocal, has difficulties being understood, gags when trying to swallow food, or presents with other communication or speech deficits, a speech/language pathologist can be a great resource and valuable member of the team. You can request that your daughter be evaluated and that goals be developed to increase your daughter’s receptive and expressive communication abilities.

Occupational/Physical therapists: These providers are recommended when your child has motor difficulties completing everyday activities. Occupational and physical therapists do their best to help your child develop and improve their fine and gross motor skills so that they can interact with their environment as independently as possible. Occupational Therapists typically focus on assessment and treatment of activities of daily living (such as eating, dressing, playing) and physical therapists focus on gross motor skills (e.g., walking, climbing stairs).  As an advocate, present your concerns regarding what your child can and cannot do. The aim is always to increase independence. For example, the ability to open a container can actually be life-changing.

ABA Providers

Applied behavior analysis is the treatment of choice for ASD as it is an evidence-based practice. So, you may have contact with providers who specialize in this method. The Board Certified Behavior Analyst (BCBA) and Registered Behavior Technicians (RBT) may be invaluable members of your team, particularly if your daughter is receiving services in the home or in an early intervention setting. Some schools may not have BCBA’s or RBT’s on staff and School Psychologists may be responsible for intervention development.

Board Certified Behavior Analyst (BCBA): The BCBA on your child’s team is responsible for assessing your child’s current ability and any barriers to learning that may be present. A certified behavior analyst conducts functional assessments in order to identify problematic behaviors, the events that trigger them, why behaviors are occurring (e.g., is it to get away from something, to gain access to something), and possible replacement behavior that can be taught. The BCBA on your team may provide you with training so that you can also implement recommended strategies with your child. They are also prepared to work with the team to best serve your child and increase her quality of life. In some cases, the school psychologist will fulfill this role.

Registered Behavior Technician (RBT): Registered Behavior technicians implement the behavior and skill acquisition treatment plan and collect data as directed by the BCBA.

All of these people come together and form a team that also includes the family and of course, your child. As you step into this new role as an advocate for your child, take advantage of supports and resources that are available to you. Members of the team may recommend webinars or other materials that will provide you accurate up-to-date information about the challenges your daughter faces and effective interventions.

Additional Resources

For more information about Attentive Behavior Care and how we can help your child, please visit our website and contact us today.

Heyde Ramirez received her Bachelor’s Degree in Psychology and her Master’s Degree in Applied Behavior Analysis from Queens College in 2012. As part of her graduate course work, Heyde worked with students with Autism and subsequently published a study on simultaneous prompting procedures. Following graduation, she became a Board Certified Behavior Analyst (BCBA) and continued to work with individuals with Autism and other developmental disabilities across various settings providing direct therapy, BCBA supervision, parent training, assessment and treatment planning.

Maria Pantelides is a Board-Certified Behavior Analyst and Licensed Behavior Analyst in the states of Connecticut, Maryland, Massachusetts, and New York with over 10 years of experience working with children, teens, and adults with autism and providing ABA services. Maria earned her Bachelor of Arts degree in Psychology with honors and her Masters of Arts degree in General Psychology with a focus in Applied Behavior Analysis, from Queens College, City University of New York. Maria has provided one to one instruction, supervision, training, parent training, and consultation to home and school programs. Maria specialized in the treatment of children with autism in both the home, community, and school setting. Maria is currently a Regional Clinical Director with Attentive Behavior Mental Health Counseling, PC. As Regional Clinical Director she supports and monitors BCBAs, technicians, and families in getting quality ABA services.

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Cultural Competency in ABA Practice

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The Behavior Analyst Certification Board (BACB) on their website lists credentialed behavior analysts from 99 countries spanning across 6 continents. Behavior analysts and consumers of behavior analysis are now establishing footprints across the globe. Each of these countries comes with its own set of cultural practices and norms. Leon Megginson, author of Small Business Management said, “it is not the strongest, or the most intelligent who survives, but the one most responsive to change”. Considering the high rates of global migration and the international dissemination that our field desires, practitioners find themselves serving an increasingly diverse population. A recent article in Behavior Analysis in Practice by Andrea Dennison and colleagues highlights the variations in cultural norms, caregiver and practitioner linguistic competencies that a culturally competent ABA therapist must consider when designing a home program.

What are the barriers?

The Professional and Ethical Compliance Code for Behavior Analysts from the Behavior Analyst Certification Board requires that behavior analysts consider the role of culture in service delivery (BACB code 1.05c), involve clients and families in treatment process (BACB code 4.02), and individualize the treatment plan to meet client needs (BACB code 4.03). Yet the BACB Fourth Edition Task List and the upcoming Fifth Edition Task List which define the scope of practice of a credentialed behavior analyst do not make much mention of culture – which means that training programs do not typically include cultural competence. Dennison and colleagues (2019) identified several barriers in ABA treatment for culturally and linguistically diverse families and highlighted ways to overcome them.

Do we hold stereotypes?

With the influence of the media or the people around us, we tend to categorize people into social groups and create a simplified conception of the group based on some assumptions – we create stereotypes and hold prejudices. Implicit biases held by a practitioner towards certain cultural sub-groups may result in a subtle, yet observable bias towards the client, and adversely impact treatment outcomes. Dennison et al (2019) suggest that a practitioner’s “self-reflection and introspection regarding cultural attitudes and practices towards clients” may be a first step towards undoing these biases.

Are we aware of cultural norms?

Practitioners often find themselves in a variety of contexts and situations with varying contingencies. Each culture comes with its own set of learned behaviors, beliefs, and norms. Dennison and colleagues add that some cultures might prefer a warm, informal discussion with a service provider prior to a formal meeting to discuss goals. A violation of this might seem off-putting to the client, and conversely, such an expectation for an informal discussion might catch the analyst unaware. In some cultures even a simple handshake for greeting might be offensive They recommend that practitioners monitor clients for signs of discomfort or displeasure during the course of the treatment to identify whether a cultural norm has been violated.

What to do when a practitioner doesn’t speak the home language of the client?

A language mismatch between the practitioner’s language and the home language of the client might lead to information loss. A client might not be able to completely express their priorities in terms of the services they need. Dennison urges practitioners to make every attempt to invite a bilingual practitioner or interpreter either in-person or online, to future family meetings. Providing the family with access to ABA textbooks written in their home language might be a good way to introduce ABA terminology and lead to better acceptability of services delivered. The authors caution against using loosely translated words; online tools might not be ideal for activities that require precise definitions.

Cultural analysis

“A cultural analysis involves an individual analysis of the cultural factors affecting an individual’s environment and the resulting contingency”, the authors add. A re-assessment of priorities in goals might be warranted, and a cultural analysis might inform what behaviors are identified as the primary targets for intervention. Dennison refers to the importance of social etiquette and the value placed on conflict avoidance in Latin cultures as an example. Measuring social validity might give the analyst information about whether the family sees the behavior change as meaningful.

Empathy grows as we learn

Try not to stigmatize immigrant families as “uncaring” for not seeking services earlier. Several socioeconomic stressors such as lack of housing and transportation availability likely play a role in their decision. The authors urge practitioners to empathize with these families and add that attempts to empathize can be made even if the practitioner and family do not share a common home language.

Finally, the lack of diversity in research with the omission of demographic details such as language and ethnicity of participants in scientific publications overlooks the critical value of such information. This calls for a shift in the field towards intentionally inclusive subject recruitment and the reporting of such information.

A culturally competent behavior analyst is not one who knows everything there is to know about every culture. This would be impossible. It is someone who can acknowledge that patterns of cultural difference may be present, and are then able to view a situation from a different cultural perspective than one’s own. Maintaining a curiosity about each client’s culture, and having an open dialogue with them about their background, ethnicity, and belief system can result in a positive outcome for the client and the analyst.

“If we are going to live with our deepest differences then we must learn about one another.”  ― Deborah J. Levine

References

Dennison, A., Lund, E., Brodhead, M., Mejia, L., Armenta, A., & Leal, J. (2019). Delivering Home-Supported Applied Behavior Analysis Therapies to Culturally and Linguistically Diverse Families. Behavior Analysis in Practice, OnlineFirst, 1-12.

About The Author

Maithri Sivaraman is a BCBA with a Masters in Psychology from the University of Madras and holds a Graduate Certificate in ABA from the University of North Texas. She is currently a doctoral student in Psychology at Ghent University, Belgium. Prior to this position, Maithri provided behavior analytic services to children with autism and other developmental disabilities in Chennai, India. She is the recipient of a dissemination grant from the Behavior Analysis Certification Board (BACB) to train caregivers in function-based assessments and intervention for problem behavior in India. She has presented papers at international conferences, published articles in peer-reviewed journals and has authored a column for the ‘Autism Network’, India’s quarterly autism journal. She is the International Dissemination Coordinator of the Association for Science in Autism Treatment (ASAT) and a member of the Distinguished Scholars Group of the Cambridge Center for Behavioral Studies.

Focus on Reinforcement

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Teaching can be incredibly overwhelming, especially in a special education classroom. Between paperwork, lesson planning, updating bulletin boards, and actually teaching, the day can get pretty hairy. Sometimes, that stress leads to a short temper, which can lead to a punitive classroom environment.

If things seem to be going in the wrong direction in your classroom, the first thing you should do is focus on reinforcement. Here are a few steps to consider:

  1. Identify 1-3 behaviors you would like to see your students exhibiting. For instance, maybe you’d like to see an increase in hand-raising (as opposed to calling out.) Clearly define the behaviors you want to see.
  2. Set up a contingency for increasing those behaviors. Maybe you’ll wear a MotivAider to give yourself a reminder throughout the day to provide verbal praise to students exhibiting the target behavior. Maybe you’ll have students earn points that they can exchange for other things, such as a homework pass or lunch with the teacher. Maybe you’ll encourage students to recognize each other when they engage in the target behavior.
  3. Teach the students about the target behavior(s). Introduce the goals to the students. It’s helpful to create a sign or other visual to remind students about the new goals.

While these are simple steps, providing more verbal praise and other reinforcement can turn around a classroom with too much time spent on reprimands and punishments.

It’s also helpful to remember (especially for new teachers) that you can make changes at any time. One of my mentors in my first year of teaching told me to tell my class we had gotten off track, so we were having a brand new first day of school. (I was teaching fourth and fifth grade students with emotional behavioral disorders.) It was shocking how well that new first day of school went over. The students were excited about the idea of a “fresh start” in the middle of the school year, and it helped me get back on track with creating a more positive learning environment.

Ultimately, the goal is to teach students about appropriate behavior by spending more time showing them what they’re doing right than focusing on what they’re doing wrong.

Written by Sam Blanco, PhD, LBA, BCBA

Sam is an ABA provider for school-aged students in Brooklyn, New York. Working in education for over 15 years with students with Autism Spectrum Disorders and other developmental delays, Sam utilizes strategies for achieving a multitude of academic, behavior, and social goals. She is also an assistant professor in the ABA program at The Sage Colleges and the Senior Clinical Strategist at Encore Support Services.