Description of Intervention & Service Components
Transdisciplinary Team Approach: “Transdisciplinary service is defined as the sharing of roles across disciplinary boundaries so that communication, interaction, and cooperation are maximized among team members.” (King et. al, 2009, p. 211) This type of approach is preferable to a single provider approach because young children’s development changes so rapidly and all developmental areas are interrelated. Teams may include families, Early Childhood Special Education (ECSE) Teacher/Specialist, Speech/Language Pathologist, Occupational Therapist, Physical Therapist, School or Clinical Psychologist, and/or Social Worker. The make-up of the team depends upon the needs of the child. The “primary provider” is one of the professionals who addresses the primary needs of the child. That primary provider is the team lead and provides all the services to the child and family and then consults with the rest of the team on a regular basis. The other team members release their role and support the primary provider so that the child and family only interact with one provider at a time. This approach is beneficial to families because it can be overwhelming to manage multiple services and providers for their children. Using this approach simplifies the services and focuses on the primary needs of the child, while also supporting overall development (Pletcher & Younggren, 2013).
Developmental Intervention (i.e., play, cognitive, literacy, early education supports): Developmental intervention is typically delivered by an early childhood special education teacher or specialist through a team-based approach in the home or classroom environment. This type of intervention focuses on play skills related to cognitive development to enhance attention, memory, problem-solving, early math, and literacy skills (Linder, 2008). Various kinds of play may include sensory play (i.e., water, sand, movement), manipulative play (i.e., blocks, Legos, small action figures), dramatic play (i.e., dress up, thematic), physical play (i.e., ball, running, hopping, climbing, bicycle) and storybook reading. Strategies focus on nurturing adult-child interactions within everyday routines, responsive caregiving, face-to-face positioning, and developmentally appropriate activities that capture the child’s attention. The provider works directly with the child and coaches or guides the primary adults that support the child every day within the natural environments, so that skills can be practiced multiple times a day so that generalization occurs across environments, people, and situations.
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Psychological Services (i.e., social, emotional, behavioral supports): Social, emotional, and behavioral supports at a young age require a play-based approach, as mentioned above. Services may be delivered by a school/clinical psychologist or an ECSE through a team-based approach. Providers and families may work on developing skills such as expressing emotions, flexibility in transitions, regulating emotions and behaviors, and interacting with others (Linder, 2008).
- At times, a Behavior Intervention Plan (BIP) is developed to address specific behaviors that may interfere with the child’s ability to learn. The plan should include specific techniques and strategies and be included in the child’s IEP. A vital component of the BIP is the progress monitoring and crisis intervention. There is an accountability factor built-in so that a BIP does not continue to be implemented if it is ineffective.
- Social skills training and support may be incorporated into the child’s daily routine through modeling and turn-taking with an adult or through structured peer group play activities. The use of visuals and social stories are effective strategies to help young children with FXS learn to manage their behavior (Dunlap, Wilson, Strain & Lee, 2013).
The graphic (above/right) is from the Center on the Social and Emotional Foundations of Early Learning and is a framework of evidence-based practices for supporting young children with challenging behaviors.
Speech & Language Therapy (i.e., communication/language, augmentative & pragmatic supports): Communication services are typically delivered by a Speech-Language Pathologist (SLP) through a team-based approach. Providers focus on the child’s ability to understand and use language effectively. The primary strategy for young children with FXS is to talk with them during daily routines by playing games, reading stories, pointing to objects and talking about them, using short phrases, and providing gestures and/or sign language. Families should encourage all forms of communication, such as vocalizations and gestures. Imitation, modeling, and expanding on the child’s language through every day activities (i.e., meals, toileting, dressing, going out, play, reading) are effective strategies to enhance communication and language (Lane & Brown, 2016).
Augmentative Communication is an alternative method of communication used for individuals with speech and language disabilities. It may include gestures, communication boards, pictures, symbols, drawings, or the use of an assistive technology device. Pragmatic language support is very important for children with FXS as they may benefit from explicit instruction in social language. For example, they may need assistance with using language for different purposes, adjusting language to meet the needs of the listener or situation, or for following the rules of conversation. Speech therapy may aid in the development of functional communication skills and improve a child’s pragmatic use of language. Improved communication skills may facilitate the building of peer relationships. Sometimes, children with FXS have oral motor delays that affect their ability to produce certain sounds and sequences of sounds. This can interfere with how they say certain sounds and words, referred to as articulation or speech intelligibility (Lane & Brown, 2016).
Physical Motor Services (i.e., occupational and physical therapy): Physical motor services may include gross (large muscle) and fine (small muscle) motor activities, as well as sensory activities.
- Occupational therapy (OT) may be recommended to address fine motor-difficulties-related manipulation of small toys or objects that build the strength needed for handwriting and dressing. This may serve to reduce anxiety and frustration related to academic tasks when in school. Activities such as playing with playdough, drawing/scribbling with crayons or makers, stringing beads or putting together Legos, provide young children with FXS opportunities to reach, grasp, release, and refine fine motor skills in functional ways. Occupational therapy may be utilized to address adaptive functioning or self-help skills such as dressing, grooming, or feeding. It may also be used to help determine the need for compensatory tools and strategies (e.g., use of the computer and keyboarding skills) to optimize functioning later in development.
Often, the occupational therapist will address sensory processing through observation and interviewing the parents to understand how the child responds to different sensory stimulation. Children with FXS often experience sensory challenges that can interfere with their ability to fully participate and access the early childhood curriculum and learn new skills. Sensory based challenges often are related to poor basic regulation of sleep/wake cycles, feeding and voiding difficulties and the OT can assist in assessment and treatment for these needs. The sensory difficulties are also associated with difficulties with overall behavioral regulation that impacts daily life and learning, so the OT can assist in determining how to best support regulation and coping skills.
- Physical Therapy (PT): PTs can help students develop leisure time interests and assist children who experience fatigue or mobility issues. Gross motor skills in young children with FXS may be impacted by low muscle tone and alignment of the foot or leg during walking and running. The PT can help determine if orthotics, exercise, or positioning will support the developing child’s body so as they grow they don’t develop ongoing difficulties.
- Sensory Integration/Processing Intervention: Sensory integration/processing therapy intervention is most often offered within the licensed oversight of an occupational therapist and may reduce the behavioral symptoms of children that experience hypersensitivity to light, touch, sound, and movement. Sensory difficulties reduce access to learning and access to typical experiences that promote development, so are essential elements to be addressed for young children with FXS. The sensory issues may also be addressed through environmental support at home or school (e.g., adjusting lighting in the classroom, reducing noise level). Occupational therapists can help create overall treatment plans that include environmental supports, interactional supports as well as the direct therapy to remediate the sensory processing difficulties. The OT can also provide sensory supports to proactively help the child to cope and access their world. Such programming should be consistent across home and school environments as well as across the overall intervention plans of the entire team.
Multi-Tiered System of Supports (MTSS) (includes Response to Intervention & Positive Behavior Intervention Supports): One of the most significant shifts in education policy of the past several decades is the implementation of RtI, or Response to Intervention. The reauthorization of the Individuals with Disabilities Education Improvement Act of 2004 (IDEA; P.L. 108-446) allows educators to use responsiveness-to-intervention (RTI) as a substitute for, or supplement to, IQ achievement discrepancy to identify students with learning disabilities (LD) (Fuchs and Fuchs, 2005). MTSS is a framework that evolved out of the RtI and PBIS frameworks that addresses the academic and behavioral needs of students through tiered interventions. The Colorado Department of Education defines MTSS as “A Multi-Tiered System of Supports is a whole-school, prevention-based framework for improving learning outcomes for every student through a layered continuum of evidence-based practices” (Evolution of RtI in Colorado Fact Sheet, January 2014). The belief is that children who are struggling academically may also have some behavioral challenges and conversely, children who have behavioral challenges may also have difficulty learning. Although, males with FXS typically do not qualify for services via a Specific Learning Disability category, this law is very important for females with FXS. Now, the law does not require children to fail prior to receiving intervention(s) to support their learning. MTSS is applied in a variety of forms across the country. Although initially developed as a solution for assessment and diagnosis issues, it also has intervention and behavioral applications. The use of a tiered approach to academic interventions coupled with the significant data collection requirements of this approach are a benefit for children with FXS and should be explored even when an IEP is in place. The graphic below illustrates the primary components of MTSS.
Related Services: Related services are identified by the Special Education team and found to be necessary for students with disabilities to access their educational curriculum and placement.
- Safety Plan: This is a plan written for staff to follow in times of emergency such as weather-related disasters, school fires, and acts of violence. Each staff member is directed by this plan to use procedures to evacuate as quickly as possible individuals who are non-ambulatory, nonverbal, hearing or vision impaired, and/or emotionally stressed by the process.
- Health Care Plan: This plan is usually developed by the school nurse who uses medical information provided by outside medical providers. Typically, the health care plan includes medication names, dosages, and side effects. In addition, treatment strategies for specific medical conditions are listed, such as how to deal with a seizure, blood disorders, serious allergies, and use of EpiPen.
- Transportation: IDEA requires that the schools provide transportation from door to school, with specialized equipment as needed, for children receiving special education.
Functional Behavioral Assessment (FBA): An FBA is a problem-solving process, typically conducted by a behavior specialist or school psychologist, designed to determine the underlying cause or function of a specific behavior to determine the best approach for reducing or eliminating the undesired behavior(s). Functions of behavior may include attention or avoidance. During an FBA, professionals should provide direct observation and collect data that may be utilized to complete an ABC chart, which stands for Antecedent, Behavior, and Consequence. Meaning, what happens before (antecedent), during (behavior), and after (consequence). This process will help determine the function or motivation for behavior of the child and the maintaining consequences (Dunlap, et al., 2013).
Applied Behavior Analysis (ABA) Therapy: ABA is not a specific program but rather a behavioral framework from which specific therapeutic interventions (e.g., Lovaas therapy, verbal behavior, discrete trial, etc.) have been developed. As such, there may be wide variability from one ABA program to another. It is important to keep in mind that systematic instruction, careful ongoing assessment, positive reinforcement, and attention to the ABCs (antecedents, behaviors, and consequences) of behavior are essential aspects of any successful therapeutic program, regardless of whether or not it is designated as “ABA.” Decisions about the appropriateness of ABA services for a child with FXS should be made after careful evaluation of the individual. Discrete trial training (DTT) and intensive table teaching (ITT) procedures may need to be less direct and may include another student to utilize peer modeling or turn-taking. Staff working with these students should continue to glean ideas and potential strategies from well-established programs while keeping in mind the syndrome-specific characteristics associated with FXS. One model based on Applied Behavior Analysis that has received much attention due to positive outcomes is the Early Start Denver Model (ESDM), which is an “early intensive and naturalistic developmental behavioral intervention designed specifically for young children 12 to 60 months with or at risk for ASD” (Baril & Humphreys, 2017, p. 322). ABA therapists focus the interventions on the individual needs of the child that may include verbal communication, joint attention (or shared focus between two individuals on an object), and meaningful social interactions with peers and family members. In a recent study, the ESDM was used with parents of young children with FXS (Vismara, McCormick, Shields, & Hessl, 2018) and determined that it is a potentially positive model for parent coaching to improve behavior and skills of their children with FXS.