EI Talk: A Blog for Early
Childhood Professionals

The responsibility of a physician is not limited to just providing medical care. While that is obviously a central tenant of our profession, I think it is diminutive to imply that our responsibility to our patients and communities is confined strictly to the walls of a hospital, office, or clinic. We know the health of individuals is more significantly impacted by social determinants of health than they are by the care that we provide.¹ In fact, it is clear that a person’s socioeconomic factors, demographic characteristics, and health insurance status can be just as predictive of outcomes as their genetic predispositions and vital signs.

This intricate interplay between social and economic policy, medical care, and health status highlights the central role of physician advocates in our health care system moving forwards. As experts in the field, who have dedicated their lives to improving the health and well-being of patients and communities, physicians have an obligation to advocate for underserved and marginalized groups. This must extend to our statehouses, courthouses, schools, and businesses. We have a duty to fight for everything from healthier environmental policy and cultural competency training, to expanded insurance coverage and increased access to treatments and cures.

I’m putting advocacy into action on behalf of individuals with disabilities, an increasingly large segment of the population that has been discriminated against, stigmatized, and mistreated. People with disabilities account for 26% of the American population and are high utilizers of the healthcare system.² However, they are 10x more likely to report a "fair or poor" health status compared to individuals without disabilities, have higher rates of risk factors for poor outcomes, and are less likely to receive preventive care and routine health screenings.^3,4 With this in mind, medical schools must make a concerted effort to highlight the unique social, cultural, and medical needs of people with disabilities, something that only 52% of schools do at this time.⁵ While I know there won’t be a quick fix to this issue, I’m ready to face it head on.

But advocacy can be daunting, too. It is an ever-expanding idea in which each person can play an important role. So, how do we get started? What does “being an advocate” mean in practice?

To me, advocacy means being a student, committing oneself to learning about the culture and needs of underserved communities. It means being a researcher, analyzing data to further our understanding of the vast intersections of medicine, social science, economics, and policy. It means being a community organizer, facilitating change through the collective engagement and action of those in our neighborhoods. And advocacy means being a leader, ensuring that the disparities and injustices which have become far too commonplace do not stay that way, but rather rise to the forefront of our minds, our practices, and our goals, in order to be addressed.

As a soon-to-be physician, I’m excited to begin my professional career at a time in which the importance of advocacy cannot be overstated. I hope you’ll join me, because we have plenty of work to do.

References

1. Artiga, S., & Hinton, E. (2018, May 10). Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity. Retrieved February 25, 2021, from https://www.kff.org/racial-equity-and-health-policy/issue-brief/beyond-health-care-the-role-of-social-determinants-in-promoting-health-and-health-equity/
   
   
2. Disability Impacts All of Us Infographic. (2020, September 16). Retrieved February 22, 2021, from https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.
   
   
3. Iezzoni, L.I. (2011, October). Eliminating health and health care disparities among the growing population of people with disabilities. Health affairs (Project Hope), 30(10), 1947-1954. https://doi.org/10.1377/hlthaff.2011.0613
   
   
4. Altman B and Bernstein A. (2008). Disability and health in the United States, 2001–2005. Hyattsville (MD): National Center for Health Statistics.
5. Seidel, Erica & Crowe, Scott. (2017). The State of Disability Awareness in American Medical Schools. American Journal of Physical Medicine & Rehabilitation, 96, 673-676. https://doi.org/10.1097/PHM.0000000000000719

Because stress and trauma can hinder a child’s development, the child may not communicate their wants and needs effectively. Some examples of how stress can affect a child’s language abilities is if their learning environment is affected. Heidi Reed of Turnaround for Children tells us how important the learning environment is and the negative effects it can have on a child if it is not a positive learning environment. For language development, a positive learning environment includes consistent language input and good “speech models”.

Children, whose home environments are less than positive due to extreme poverty, homelessness, violence, etc., are stressful and can influence language development. For example, in order to provide for the child parents/caregivers may need to work long hours and may not be available to talk to the child with the frequency or intensity to develop language skills. Specifically, trauma can lead to young children to have “selective mutism”. Children with selective mutism chose not to speak or may only speak to certain people they trust because of the trauma they have experienced. Children exposed to neglect and abuse are at-risk for having a developmental delay compared to typical peers, especially in the language domain because they are experience these stressors at a time critical to language development.

Heidi Reed says, “it’s not what the kids or families can do but what we can do“, which reminds us to conduct a thorough parent interview to identify specific family stressors that could impact the child and what the child’s language environment is. We can help the families promote a positive learning and language environment. For example when serving a child, it is imperative for a provider to teach a parent/caregiver how to be a good speech model, and how to promote the best language environment for the child. Recognizing the impact of stress and trauma on a child’s development reminds us of that service providers need to focus on the child, the family, and the community.

Toxic stress situations affect negatively healthy development because the lack of positive relationships. Adverse Childhood Experiences (ACEs) can contribute to a host of negative outcomes including developmental delays and school failure. Examples of ACEs include neglect, abuse, parents with mental illness, poverty, racism, oppression, homelessness, separation from parents, and punitive discipline. Studies have shown that children who experienced 4 or more of these ACEs are 32 times more likely for developing learning or behavior problems.

Many children who are identified in early care and education situations as displaying challenging behaviors or decreased attention have often experienced 4 or more ACEs. The behavior may be the outward manifestation of a host of challenges a young child experiences on a regular basis. Specific ACEs are linked to an increased risk for developmental delay or disability. These include physical abuse, emotional abuse, neglect, restraint and seclusion, sexual abuse, invasive medical procedures, and social rejections.

Children with disabilities who attend a childcare program can’t leave their ACEs at the door, therefore, to help promote learning and development we must help children learn to respond to stress or trauma in healthy, positive ways. Key to promoting positive behaviors in response to stress, childcare professionals should provide a positive, healthy, trusting relationship. A safe, calm, and predictable environment can also help with development by balancing dysregulating environments with coregulating environments, such as in a child care setting. Creating a healthy context for learning helps promote learning in children. In children with disabilities who have also experienced ACEs early intervention providers may also need to explicitly promote the building blocks of learning such as self-regulation, self-management, and attachment. Providing children with disabilities in a childcare setting with the resources that they need based on their developmental level and providing necessary support will foster learning and growth along with their peers.

What is the purpose of the position statement?

The Division for Early Childhood (DEC) of the Council for Exceptional Children (CEC) and the IDEA Infant & Toddler Coordinators Association (ITCA) collaborated on this joint position statement to acknowledge the importance of early intervention (EI) service coordination and recognize the expertise and needs of the professionals who provide this service. Because of the complex nature of service coordination and the essential role of service coordinators in the EI process (Bruder et al., 2005; Childress, Nichols, & Schnurr, 2019; West, Duggan, Gruss, & Minkovitz, 2018), it is the position of the DEC and ITCA that service coordinators must have the knowledge, skills, administrative support, professional development, and resources they need to provide the highest quality services to children and families. The DEC and ITCA also endorse the use of the guidance document, Knowledge and Skills for Service Coordinators (KSSC; see Appendix A; Workgroup on Recommended KSSC, 2020) by state and local programs to ensure consistency in the hiring and training of service coordinators in early intervention.

Call to Action

As described in the joint position statement and in federal regulations, service coordination is an essential EI service that, along with other educational and therapeutic services, has an equal and impactful role in the experience of families. Service coordination is the only mandated EI service under Part C of the Individuals With Disabilities Education Improvement Act (2004); therefore, it should have equal importance, administrative support, and opportunities for professional development as other services. To build the knowledge, skills, and expertise needed to effectively assume the complex roles and responsibilities of EI service coordinators, the DEC and ITCA strongly recommend the following:

• States and local programs should review and align current competencies to the indicators in the KSSC guidance document. Or, where competencies are not already in place, the KSSC should be adopted to guide hiring decisions and inform inservice professional development of current and future service coordinators. Adopting this guidance would promote consistency across states and international programs, which would elevate the quality of services provided to young children and families receiving EI.
• Leaders who hire, supervise, and mentor service coordinators must have a thorough understanding of the expertise and needs of these professionals. This understanding is essential to ensure that compensation aligns with the level of responsibility expected of service coordinators. Service coordinators also should have appropriate administrative support, reflective supervision, and resources to successfully manage the workload, navigate changes in policies and procedures, and most importantly, partner with families.
• States and programs must consider multiple factors when determining workload size to ensure that service coordinators can manage the roles and responsibilities outlined in this joint position statement. The factors to consider include (1) the number of families served per service coordinator, (2) the varying levels of need experienced by families, (3) the model of service coordination implemented in the state/program, (4) the need for administrative support and supervision, and (5) the level of responsibility, educational background, and any specific expertise required of service coordinators in a given state or program. Although no single number can ensure an ideal workload for all who provide service coordination, professionals in this role have reported significant challenges with managing their workloads, especially when local resources and support are limited, compensation is low, and the number of families served is high (Childress et al., 2019). It is, therefore, imperative that administrators acknowledge the strain that high workloads place on service coordinators and use the variables provided in this position statement to determine and monitor manageable levels that lead to better retention of these professionals and higher quality services.
• Additional research is needed to identify recommended practices specific to service coordination, which could be guided by the KSSC document. Research also needs to address how these practices would be implemented with families and how service coordinators would be trained to use these practices during preservice and inservice trainings. Findings could then be used by policymakers and other leaders to build in the necessary resources EI systems need to ensure that service coordinators can implement the diverse roles and responsibilities described in this joint position statement.

To achieve the goal of high-quality service coordination for all children and families receiving EI, states must prioritize professional development for new and experienced professionals in this role. As the only federally mandated EI service under Part C of IDEA, states (and their international counterparts) have a responsibility to ensure that families are met by professionals who have the knowledge, skills, beliefs, and abilities to support families using recommended practices.

Why are DEC and ITCA taking a position on service coordination?

The DEC and ITCA recognize the need for a common understanding across the EI field about what high-quality service coordination looks like and what knowledge and skills are recommended for professionals who provide this service. To complement the KSSC document, it is necessary that the field agrees on the beliefs, expertise, roles, and responsibilities of professionals who provide service coordination, which are described in the position statement.
This statement expands on the service coordination activities outlined in IDEA (2004) so that state and local programs have guidance that can be used when preparing, hiring, training, monitoring, and supporting service coordinators. It is DEC’s and ITCA’s intent that strengthening the field’s understanding of service coordination will lead to increased respect, appreciation, and support for those who provide this important service.

Access here the full position statement.