EIPA Response to the BEIS/FS Efforts to Support Children Having Torticollis Through the PA Early Intervention Program January 2020
The Early Intervention Providers Association of PA (EIPA) thanks the Bureau of Early Intervention Services and Family Supports (BEIS/FS) for their interest and attention paid to our membership’s concerns raised in our January 2019 Clinical Position Paper entitled “Congenital Muscular Torticollis and Early Intervention Eligibility in PA”. As was shared with EIPA, the BEIS/FS response to EIPA’s expressed concerns was to provide guidance for EI developmental evaluation team members regarding the use of Informed Clinical Opinion when evaluating a child having Torticollis. This guidance was provided by including information related to Torticollis in the “Using Informed Clinical Opinion to Determine Eligibility for Infant-Toddler Early Intervention in Pennsylvania 2019-20” Job Aid on the EITA website in July 2019.
EIPA believes we share a common mission with BEIS/FS to assure that all of Pennsylvania’s children having Torticollis receive critical Physical Therapy services as early as possible. While EIPA greatly appreciates the efforts made by BEIS/FS to fulfill this mission, we believe and fear that the Bureau’s efforts have not had the intended positive impact hoped for. Therefore, EIPA believes that the efforts made by BEIS/FS have not gone far enough to successfully assure that the developmental needs of all of PA’s infants whose short- and long-term development are significantly placed at-risk by having Torticollis are fully supported. The purpose of this paper is to outline the ongoing concerns held by EIPA membership and to offer recommendations which we feel will responsibly support all children having Torticollis and their families in Pennsylvania.
In our January 2019 Clinical Position Paper, EIPA provided great evidence concerning the importance of identifying and treating Torticollis as early as possible. Irrefutable evidence exists that demonstrates the cost savings and shorter duration of Physical Therapy needed when treatment for Torticollis begins as early as possible. Evidence based practice models clearly have demonstrated the reduction and even elimination of secondary developmental problems and delays which result from either delayed or a lack of treatment of Torticollis.
Since the submission of our Clinical Position Paper in January 2019, even more research has been published demonstrating evidence of the “negative long-term consequences of delaying intervention, and the importance of early identification and early intervention to maximize outcomes.” (Sargent, Kaplan, Coulter & Baker, 2019, p.1). New research continues to validate long-term negative consequences through lower cognitive and academic achievement scores of school-aged children diagnosed with positional plagiocephaly and/or brachycephaly. These
children originally were determined to have only mild developmental delays during infancy and toddlerhood (Lin and Carr, 2019).
EIPA’s Concerns with the EITA ICO Job Aid
EIPA has identified several concerns related to using the EITA ICO Job Aid as the primary means to assure that all County EI Coordinators, EI Service Coordinators, EI Developmental Evaluators and EI Therapists have a clear and thorough understanding of 1) the serious short- and long-term consequences of not providing appropriate Physical Therapy to children having Torticollis and 2) how to best assure that children having Torticollis are being identified as early as possible for EI eligibility in PA in order to receive essential Physical Therapy services. A summary of EIPA’s concerns follows:
- Discrepancy in the Definition of Torticollis:
CONCERN: In the first paragraph of the Torticollis section of the ICO Job Aid, the wording is “When a child is referred to Early Intervention with the diagnosis/description of torticollis, a screening and/or evaluation should be completed to determine if there is a delay in any of the domains.” However, in the Decision Tree, the wording merely states “Referred with a diagnosis of torticollis”. Some of the children who are referred to EI have a head tilt/rotation but have not yet received a formal diagnosis of Torticollis. Many of these children are just as much at high-risk for developing future developmental delays as children with a formal diagnosis of Torticollis and should be found eligible for Physical Therapy through the EI Program. This Job Aid can lead one to believe that ICO cannot be used for a child with a head tilt unless there is a diagnosis of Torticollis.
EIPA RECOMMENDATION: The ICO Job Aid should consistently use the terminology “Referred with a diagnosis/description of Torticollis” throughout the Job Aid and especially at the top of the Decision Tree. Starting Physical Therapy as early as possible (but before 3 months of age) has been found to be a critical factor in assuring the best outcomes for children with Torticollis. Thus, not including children with a “description” of Torticollis on the Decision Tree will lead to some children who are in need of Physical Therapy to not be referred for this vital EI service.
- Determining the Severity of the Torticollis in Order to Use the Decision Tree and Qualifications of the Independent Evaluator Making the Severity Determination:
CONCERN: The Decision Tree in the Job Aid used to determine EI eligibility through the use of ICO for a child with Torticollis requires the Evaluator to determine if the Torticollis is mild, moderate or severe by using a chart developed by the American Physical Therapy Association. Determining the severity of Torticollis and whether or not a mass exists in the sternocleidomastoid muscle requires manipulation and measurement of the delicate necks of infants. Only healthcare professionals who have received specialized training within their scope of practice should ethically be permitted to manipulate the neck of an infant to determine Torticollis severity. Licensed Physical Therapists are the only professionals who typically provide developmental evaluations within the PA EI Program to routinely receive such specialized training as part of their education.
Therefore, only Physical Therapists participating on an EI evaluation team should
ethically be permitted to manipulate and measure an infant’s neck to determine severity of Torticollis and thus be permitted to determine EI eligibility using ICO according to the Decision Tree. Evaluators who practice in disciplines other than Physical Therapy can do serious harm if attempting to manipulate infants’ necks without the proper training. Most eligibility evaluations of children having Torticollis are performed by professionals who are not licensed Physical Therapists. Thus, unless a physician has provided detailed information regarding the severity of an infant’s Torticollis prior to the EI evaluation, the Decision Tree cannot be used to determine eligibility through ICO in the majority of EI evaluations on children having Torticollis, since a Physical Therapist is not typically a member of the evaluation team.
EIPA RECOMMENDATION: Within the PA EI Program, only licensed Physical Therapists have the knowledge to safely manipulate and measure an infant’s head tilt/rotation to determine the degree of Torticollis severity. Furthermore, within the PA EI Program, only licensed Physical Therapists have the clinical knowledge base and experience to assist a family in determining the best course of Torticollis management, including the need for and frequency/duration of Physical Therapy as well as the need for strategies and exercises to treat Torticollis. Thus, when a Physical Therapist is a member of the evaluation team, EIPA supports the use of the Decision Tree to determine EI eligibility and treatment needs of children having a diagnosis/description of Torticollis. However, whenever there are no Physical Therapists on teams evaluating children with a diagnosis/description of Torticollis, EIPA strongly believes that all such children should be referred on to a licensed Physical Therapist within the EI Program in order that measurements, therapy recommendations and strategies/exercises can be provided by the professionals who have been specifically trained to provide this information.
- Dissemination of Information Regarding the EI Eligibility of Children Having Torticollis and the Use of Informed Clinical Opinion:
CONCERN: Although BEIS/FS intended to provide guidance to the EI field in the EITA ICO Job Aid related to the use of ICO in determining EI eligibility for children having Torticollis, this information was not clearly/widely disseminated to or watched by most practitioners in the field. In EIPA’s discussions with EI Service Coordinators and Evaluators, we learned that the majority of Service Coordinators and Evaluators were either unaware of the ICO Job Aid or had not taken the time to view the Job Aid. Therefore, the information provided in the ICO Job Aid has not been viewed by most evaluation team members who would benefit most from the information. EIPA continues to get feedback from our members that some County EI Programs remain very reluctant to allow their independent evaluators to use ICO as a means of finding children eligible for EI. In addition, BEIS/FS has not provided any information to the greater PA EI community regarding the importance of identifying and treating Torticollis as early as possible through Physical Therapy and the dire long-term consequences to infants/toddlers when Physical Therapy is either begun late or not provided at all.
RECOMMENDATIONS: EIPA believes that providing early support to infants having Torticollis is a critical issue to their long-term positive development, and thus Torticollis should be an automatic qualifier for EI. Many EI Service Coordinators, Evaluators and Therapists remain unaware of the consequences of not identifying and treating Torticollis as early as possible. Given the extremely important nature of this issue, EIPA supports the position that any EI professional in PA involved in evaluating infants with Torticollis for EI eligibility should be required to complete a Job Aid which addresses 1) the importance of identifying/treating Torticollis as early as possible and 2) the short-and long-term negative developmental consequences of not addressing children’s Torticollis as soon as possible through Physical Therapy. EIPA also believes that this Job Aid should clearly require that a diagnosis of Torticollis be an automatic qualifying diagnosis for EI services. At a minimum, this eligibility determination should require a referral to a licensed Physical Therapist to at least perform a consult on each child with a diagnosis or description of Torticollis in order to determine the need for and frequency of Physical Therapy services.
EIPA’s Continued Concerns and Recommendations Regarding EI Eligibility of Children Diagnosed with Congenital Muscular Torticollis
EIPA greatly appreciates the attention which BEIS/FS has given to this essential issue of supporting PA’s children with Torticollis and their families. However EIPA believes that BEIS/FS has not gone far enough to assure that PA’s children who have Torticollis will receive the critical EI Physical Therapy they need. We have made numerous recommendations in this paper which we believe would help to strengthen PA’s EI support to children having Torticollis. EIPA strongly supports the notion that Torticollis should be accepted as a diagnosis which automatically qualifies a child for EI services. The nature of Torticollis with its high probability of future developmental delays if left untreated meets the definition for children having a serious physical or mental diagnosis as stipulated in PA’s EI Regulations (Section 4226.22).
As Sargent, et al. (2019, p.6) conclude, when children have been identified with Congenital Muscular Torticollis (CMT), it is imperative that pediatric practitioners “identify infants with CMT early and refer immediately for physical therapy intervention to improve clinical outcomes, shorten episodes of care, reduce burden on families, and decrease cost of care for infants with CMT.” We end with our plea from our original EIPA Clinical Position Paper:
We implore you to share this current information on Torticollis evidence based practices and research with all County EI Coordinators to make certain that everyone across the State is aware of the importance of treating infants with Torticollis as early as possible regardless of severity. We also ask that you implement a required protocol to assure that all infants referred to PA’s EI program with a diagnosis of Torticollis by a physician are assessed by a knowledgeable and experienced Physical Therapist who can most appropriately determine the need for and frequency of Physical Therapy. We respectfully request that BEIS/FS fully support EIPA’s tenet that all children having a diagnosis of Torticollis from a physician should automatically qualify for EI services based upon that diagnosis, as is consistent with PA’s EI Regulations. We appreciate your review of this important request to provide needed support to PA’s infants with a diagnosis of Torticollis and their families. All EIPA members eagerly await a renewed response from BEIS/FS.
Sargent, B., Kaplan, S., Coulter, C., & Baker, C. (2019). Congenital Muscular Torticollis:
Bridging the Gap Between Research and Clinical Practice. Pediatrics 144 (2), 1-8.
Lin, M. & Carr, L. (2019). Plagiocephaly/Brachycephaly Associated With Lower Cognitive and
Academic Achievement Scores. https://www.2minutemedicine.com, 1-2.