What to Do in the Meantime: Helping Families Navigate Early Intervention

The process of identifying, assessing, and starting early intervention for a developmental delay can be a long haul for families and practitioners. Often, weeks or months pass before a child’s needs can be determined and resources lined up to meet them.

As a practitioner, you can use the wait time to educate and empower families so they know what to expect and what supports may be available to them along the way. 

What lengthens the early intervention timeline?

The early intervention process occurs in phases. The first phase is recognizing the developmental delay. The second phase is identifying or diagnosing the reason for the delay. And the third phase is participating in an early intervention program. Many intersecting factors at the family level and at the service level can lead to delays in any of these phases.

For example, some parents or caregivers may take longer than others to recognize a developmental delay or to speak with a health professional about one. At the service level, funding, referral practices, staffing, and the proximity of assessment facilities can also mean longer wait times for an evaluation. In addition, eligibility criteria, a lack of specialists, and language barriers can all affect timelines in early intervention programs (Sapiets et al., 2021).  

How can we make the process better for families?

The guidance below has been consolidated from studies that sought the opinions of parents and caregivers involved in early intervention programs, and from the recommendations of the early intervention advocates and experts.   

Here’s an overview of the recommendations researchers and families have made. 

1. Explain the process in plain language. Waiting is often easier when we know what to expect. You may want to help parents understand these parts of the process:

• What the next steps are 
• What the approximate overall timeline is likely to be 
• What factors could lengthen or shorten the timeline 
• What each assessment will entail 
• Who will be involved at each stage 
• How to reach the professionals responsible for each process 
• What their rights and responsibilities are at each stage

You may want to take this time to establish a family liaison to be the main professional contact for answering questions and providing updates to the family. If language barriers exist, it’s important to minimize their impact by providing materials in a language parents can access and by working with interpreters as needed. The U.S. Department of Education provides language assistance in over 100 languages. 

There are many unknowns in early intervention, so it will help if you can fill in knowledge gaps whenever possible. You may want to supply a document like this Early Steps Record Keeping Toolkit, which parents can use to consolidate their notes, track progress, and keep up with contact information.  

2. Explore the family’s goals, concerns, perspectives, and priorities early on. This is no small task. It means that the practitioner plans to respond to the needs that the family has expressed, and will use interventions that are inherently respectful. This approach may mean that you need to make time for cultural awareness training for yourself and your team. It may also require changing some of your processes and creating new tools. The ECTA Center offers practice improvement tools you can use to engage families in the early intervention process. 

Studies show that while family-focused collaboration is relatively new, it can lead to greater quality of life and more effective interventions. In one study involving family-centered practices with children in early intervention in Ecuador, participants said that the child made developmental progress--and the whole family benefitted. “I also feel that we are more united as a family…and the truth is that we are calmer now with your help,” one mother reported (Frugone-Jaramillo & Gràcia, 2023). 

3. Connect families with resources. You can assist parents and caregivers by connecting them with family-led organizations and family-to-family health information centers where they can tell their stories, access free training, explore sources of funding for services, become engaged in advocacy work, and interact with other people on similar journeys. Some of these organizations are:

• Family Voices 
• Parent to Parent USA 
• National Federation of Families for Children’s Mental Health 
• The Center for Parent Information and Resources  

4. Help parents learn about their child’s educational rights. Some early intervention services are available through health and human service departments. Some are available through school systems. Understanding how to access these services in each setting is an important part of parenting a child with special needs. Some parent-friendly resources can be found here: 

• Reading Rockets: Rights and Responsibilities of Parents of Children with Disabilities 
• Special Needs Alliance: What Parents Need to Know about Special Education Rights 
• Special Education: A Basic Guide for Parents (National Association of School Psychologists) 

5. Coach families in completing helpful developmental activities at home. Many basic strategies can be practiced at home and in other natural settings with a little guidance from a professional. The Centers for Disease Control and Prevention offers resources for parents who want to encourage growth while they’re waiting for developmental assessments and interventions. The American Speech-Language-Hearing Association suggests these activities for developing language skills at home.

When parents have confidence in their role and actively participate in therapies, it can give them a way to regain autonomy and a sense of control. It can build closer bonds with a child, greater parental confidence, and keener sensitivity to a child’s needs.  

6. Invite families to engage as advocates. Head Start and other early intervention programs can empower families to act as advocates, both in securing services for their own children and in community and policy roles. You can share these practical tips for carving out time for advocacy in a busy family schedule.

It's important to recognize that not all families, parents, or caregivers will feel equipped or feel comfortable as vocal advocates. You may be able to use these Harvard Family Research Project strategies to make your clinic or classroom feel safer for those who want to advocate for their child’s needs.   

7. Communicate in varied ways. When researchers survey parents about their satisfaction with the early intervention process, ineffective communication is often identified as a barrier. It’s a good idea, then, to stay in touch with families throughout the waiting period.

In focus groups that met to discuss early childhood programs in Illinois, participants said they were grateful when centers relayed information about opportunities through parent-focused social media groups, television and radio ads, community calendars, and flyers sent home from school. One family member said, “There’s multiple ways of communicating so you’re never left in the dark…” (Bentley et al., 2023).  

8. Ask for feedback from the families you serve. In one Spanish early intervention program, researchers queried parents about their impressions during treatment. The survey results confirmed that parents were concerned about long wait times and the lack of flexibility in scheduling options—issues that arise frequently in U.S. early intervention programs, too.

But clinicians also learned about some practical concerns that were particular to their clinical facilities. For example, families said they needed a covered walkway to prevent children from getting overheated or wet on the trip from the parking lot to the clinic. Researchers said the survey gave families a chance to actively participate, which “makes the families feel as if they are part of the treatment” (Romero-Galisteo et al., 2020). In another study, researchers learned that carrying out assessments in the home or providing transportation to a clinic could make the process easier for families who lived a long way from the clinic (Sapiets et al., 2021). 

You may discover that there are simple measures you can take that will make the process smoother for everyone. 

Long wait times are an unfortunate reality in early intervention in the U.S.—but the wait time needn’t be wasted time. The steps you take now could make the early intervention process more efficient for you and more effective for families down the road.