We Must Advocate for Families in the Early Intervention System, Now More Than Ever

Benny Delgado Jr., CDS

From the moment families discover that their children need early intervention (EI) services, a new, often confusing world unfolds before them. From one moment to the next, there are emotions to reckon with, diagnoses to understand, services to schedule, and bureaucratic mazes to negotiate. For many families, it is an overwhelming process. Ideally, EI advocates offer the support and guidance desperately needed at this time. Since the pandemic took hold, however, there has been no easy way for advocates to be in touch with families, many of whom do not have access to technology. EI advocates know that “serve and return” interactions are key to the developing brain and that their absence can put children’s well-being at risk. Therefore, inequitable access to EI advocacy, telehealth, and a host of other services can have lifelong impacts. Some steps have been taken in the right direction. Here are some that we should focus on developing further.

Telehealth: Access, Policy, Providers, and Financing
Telehealth has emerged during the pandemic as a means to connect with families. While access is not equitable due to some families not having the needed technology, that it was developed as an option and implemented successfully at all during the pandemic is noteworthy. As co-chair of the workgroup on telehealth, I ensured we took on equity as a priority. One of goals was to find ways to address the potential for inequities due to a lack of access to technology. As a result, the Illinois Early Intervention Clearinghouse was able to obtain a grant that enabled it to lend iPads with and without data plans, as a well as provide hotspots to families who need access.

In addition, changes have occurred not only in terms of several policy and program requirements with regard to telehealth, but in workforce reaction to some of them. Over 4,100 out of 4,800 Early Intervention providers in Illinois have now received training by the EI Training Program, through the University of Illinois. It has been amazing to see the degree to which providers have stepped up to seek guidance and training to further develop their skills; it is impossible right now to provide services in person but they recognize the need to remain faithful to EI principles and evidenced-based practices for infants and toddlers with special needs. Those who have been most successful in supporting families during this time see the clear value of coaching parents to become more involved in their children’s therapy and the value of providers learning how to infuse intervention within the context of everyday family routines and interactions with their children. Their willingness to participate in online reflective supervision will impact service quality which will, in turn, impact equity. 

We also have seen changes in financing of telehealth. After much advocacy, telehealth visits are now reimbursed at the same level as in-person visits. If we can now provide access to these services to the most marginalized families, we will inch closer to equitable outcomes for all children.

Family Outreach, Engagement, and Support
The pandemic has provided a chance to reflect on methods of family outreach, engagement, and support. For instance, traditionally, service coordinators have played the role of family communication liaison. The pandemic has provided an opportunity to try out other means of communicating with families, ones that allow for direct contact between families and EI advocates. For example, through my participation in a C.I.T.Y. of Support’s Virtual Happy Hour, I was able to hear directly from families about their experiences using EI telehealth and receiving virtual IDEA Part B services. They shared the successes and challenges of services being provided in this manner, as well as their priorities for our plan to transition back to some level of in-person visits during Phase 4 of our Restore-Illinois Plan. I was able to share these parent perspectives with our larger Re-Open Illinois Workgroup, which is charged with developing a plan for how services get addressed during the pandemic.

Our focus should be on developing this and other vehicles by which to directly reach and support families. It is only through this type of contact that EI advocates can elicit families’ concerns and fears, which should be one of the driving forces behind policy making. 

Planning and Public Policy Decision-Making
Changes are also apparent in the way providers are offering input to planning and public policy decision- making. More people are learning about the EI system. Pediatricians are asking for personal protective equipment (PPE) for EI providers. A group of the professional associations serving children with special needs created a survey to see how telehealth is working from a family, provider, and Child and Family Connections perspective and brought in people from across the state. One of the universities sponsored the survey. This is all new and exciting. But we should also seek other ideas. We need to do focus groups with families – face-to-face in the future.

Looking Ahead 
Steps to advance equity and reduce racial/ethnic disparities are being taken. Doing the following for Early Intervention will advance the cause further:

  • Create bi-directional vehicles of communication with families and providers.
  • Ensure every state has an advocacy organization for beneficiaries of the EI system.  
  •  Establish a virtual recommendations box and a system that is responsive. 
  • Develop an Early Intervention service delivery approach that has a greater focus on transdisciplinary teaming.
  • Become more family centered.
  • Allow parents to drive the system in new ways.
  • Be more flexible in how we reach out to parents.
  • Support parent groups.
  • Improve data collection regarding utilization.

It is incumbent on us to create a better, stronger, and more equitable system, in particular, one that allows all families to benefit as much as possible from the support of EI advocates. We must ensure that those who had already experienced challenges in accessing EI services prior to the pandemic are not further burdened by the gaps in the system that have emerged as a result of the pandemic, making it even more difficult for these children to reach desirable developmental outcomes. Achieving this requires EI programs to have the courage and will to address social equity issues head on. This includes acknowledging the implicit biases that exist within our system and the role that they play on our actions, whether at the policy or implementation level. Then, we must take swift action to create and enforce policies that result in demonstrable evidence of decreasing disparities within the system. To do this, we have to go beyond what is safe for us. We cannot let the problem define the solution. On the contrary, we have to figure out what we want to see happen – and then bring it to fruition. Where there is a will, there is a way.

About the Author
Benny Delgado Jr., a developmental therapist and owner of Leaps and Bounds Family Services in Lombard, Illinois, has worked for over 20 years with children, birth to age eight, with developmental delays. He has extensive training in autism and relationship-based/family-centered care, empowering parents to become active participants in their IFSP meetings, and maximizing parents' engagement in therapy sessions. He is the past president of the Illinois Developmental Therapy Association and a provider representative of the Illinois Interagency Council on Early Intervention. He is a fierce advocate on behalf of families in the Early Intervention system.