Centering Family Voices to Advance Access to Early Intervention

By Mary Lee Porterfield, Margaret C. Gillis, and Howard Morrison

The Individuals with Disabilities Education Act (IDEA) mandates that Part C early intervention (EI) programs serve young children with identified disabilities/delays and their families. Yet EI programs often struggle to connect with potentially eligible families and frequently lack family perspectives on how to improve outreach.

Child Find ACCESS is an evidence-based model that local EI programs can use to address these issues. It provides a roadmap that helps local EI leaders work with families and other key partners to identify needs and design solutions that improve family access to and uptake of EI services. The model centers family voices, or perspectives, at each stage of the work. ​

What Does it Mean to Center Family Voices?

Centering family voices means purposefully engaging with families to learn about their experiences seeking EI services, get their insights on underlying barriers and opportunities, and co-design solutions that meet their needs and reduce challenges. The Child Find ACCESS model includes family voices in multiple ways to ensure that improvements to the local child find system are responsive to family experiences.  

The Community Leadership Team

The driving force of the Child Find ACCESS model is the community Leadership Team (LT), which includes EI program staff, families, and other referral partners. On the LT, families participate as the team digs into what’s working and for whom, possible issues, and promising solutions. LT families can participate in regular team meetings or contribute in other ways that work better for them.

For example, during development of the model, families on one community LT preferred to meet separately and provide feedback to the LT on specific issues. This arrangement gave families much-needed opportunities to support one another and a safe space to share honest feedback on the issues and input on solutions.

Other Model Elements

Family voices also inform all other aspects of the Child Find ACCESS model.

• Data collection: The LT collects (usually through interviews) stories about families’ experiences seeking services for their young children and recommendations for improvements.
• Data analysis and use: Families on the LT participate in discussions about interpreting and using data as the team works to improve the child find system. These data include family interview data, administrative data on the child find process (such as referrals, referral sources, and outcomes of referrals), and other available data.
• Key partner and other community engagement: On the LT, families also provide perspectives on community organizations or groups that are relevant for families of young children and additional community members who may help diagnose or address challenges.
• Strategic planning and implementation: Throughout the work, LT families are deeply involved in digging into challenges in the local child find system and helping to identify evidence-based practices that will address the issues. Families may also be involved in implementing improvement activities.

How Have Family Voices Been Centered During the Model Pilot?

In the Child Find ACCESS model pilot, LTs, including families, engaged in root cause analysis. Through this process, they compiled and synthesized all available data on the local child find system, identified the main issues, and then worked to identify the underlying or root causes that were keeping those issues in place. This section describes one LT’s experience working with families to identify root causes and find solutions.

Family Insights to Get to the Root of Issues

Identifying the Issues

To begin the process, the LT reviewed, discussed, and synthesized available data to understand barriers related to the child find system. They reviewed administrative data on referrals and data from the Child Find Self-Assessment (a tool for cross-sector teams to discuss and rate their implementation of child find best practices), which was adapted for local use, to gain an understanding of the scope and functioning of the current child find system. Then the team reviewed data from surveys of health care and child care professionals about their referral practices and knowledge of the EI program, as well as data from interviews with families about their experiences seeking services for their young children.

The LT combined or synthesized these data and identified three main problem statements:

1. Families do not know about the EI program or that they can self-refer.
2. Physicians take a wait-and-see approach to family concerns.
3. Few referrals come from child care and early education programs.

Identifying Root Causes

The LT then discussed the root causes for each problem statement. Over several meetings, families contributed possible root causes of each issue as the team brainstormed ideas. The team identified several possible root causes for some issues, fewer for others. They then prioritized the issues they could address.

In the end, the LT identified the root cause they could most effectively address for each problem statement:

Problem Statement	Selected Root Cause
Families do not know about the EI program or that they can self-refer.	Resources and info about the EI program are not available where families spend time and would see them.
Physicians take a wait-and-see approach to family concerns.	Physicians are unaware of the EI program or how it could benefit young children and families.
Few referrals come from child care and early education programs.	Child care and early education teachers lack the resources to monitor development, talk with families about concerns, and make or suggest referrals.

From Insights to Action: Family Recommendations for Improvements

Families informed the recommended improvement strategies for each issue. Families who were interviewed provided initial recommendations, and families on the LT participated in further refinement of improvement strategies and decisions about implementation.

Issue 1: Families Do not Know About the EI program or That They Can Self-Refer

During interviews, families recommended posting resources about child development and the EI program, including QR codes, in pediatric practices. The LT decided this would be the most effective strategy to address the issue and root cause and identified other community spaces where families might see the information.

A family member on the LT took on the task of customizing resources from the CDC’s Learn the Signs. Act Early program. They created two posters and a flyer, all with QR codes connecting to the local interagency coordinating council’s (LICC’s) website. That family member, who was the LICC co-chair, also updated the website with a family-friendly section explaining the referral process and providing contact information for the local EI program.

The LT members then divided up the task of delivering the materials to pediatric practices and to community locations such as libraries, laundromats, grocery stores, and gyms.

Issue 2: Physicians Take a Wait-and-See Approach to Family Concerns

Through interviews and LT participation, families suggested that physicians need compelling information about the EI program as well as practical strategies for discussing concerns with families. Because the LT updated the state EI coordinator on the team’s progress throughout the pilot, the coordinator was able to identify an improvement strategy from the state level.

A pediatrician in the state EI office drafted a letter explaining the EI program, eligibility criteria, and referral process. The state office provided the letter to local EI programs to customize with their contact information and deliver to local pediatric and family medicine practices. The local EI programs focused on distributing the letter first to those practices that were not making many referrals.

This solution shows the value of keeping state and system leaders informed about the work so they can provide related resources or supports not available at the local level.

Issue 3: Few Referrals Come from Child Care and Early Education Programs

Families on the LT identified numerous improvement strategies for staff from child care and early education (CCEE) programs. For example, they recommended increasing CCEE staff members’ understanding of early childhood development, of how to discuss children’s progress and concerns with families, and of the EI program and referral process.  

The LT partnered with the LICC on a solution. A few LT members who also served on the LICC developed physical notebooks of resources, including information about developmental monitoring and screening, tips on discussing developmental concerns with families, information about the benefits of EI, and a guide to the referral process. A small number of the notebooks were piloted with local CCEE program administrators and teachers. These administrators and teachers overwhelmingly reported that the resources increased developmental monitoring in their program, improved teacher communication with families, and increased awareness of the local EI program and related resources. Local cross-sector partners plan to use the notebooks in their training and technical assistance for CCEE programs, and the LICC made all of the materials from the physical notebook available electronically on its website.

This improvement strategy was the product of synergy among families and others on the LT who had ideas about what should be in the notebooks and had resources to devote to the development and testing of the content.   

Conclusion

Using the Child Find ACCESS model, community Leadership Teams effectively engaged families and centered family voices to diagnose challenges and design and implement improvements for their child find systems. This approach ensured they were addressing issues that mattered most to the people EI programs are trying to reach through their child find activities. Authentic family engagement also ensured that the solutions the LTs came up with met families’ needs.

Learn More

Access more resources related to Child Find ACCESS on our Resources Page.

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About the Authors