Early Childhood Special Education: Barriers and Solutions for Equitable Access

4 April 2023, 12:50 PM PT

An opinion piece by Fernanda Martinez Novoa and Dr. Abigail Grant

The long-overdue focus on special education by Washington legislators is welcome.  

But any special education reforms will be incomplete if policymakers fail to also focus on early childhood special education. Inequities in educational outcomes for students of color, students from low-income backgrounds, and students with disabilities are caused by systemic factors, including the system through which early childhood developmental delays are identified and responded to.

Supporting children and families in the early years of a child’s journey is vital to lifelong learning and well-being. And because of outdated and English-language-dominated systems, many families face barriers in the early childhood special education system. These barriers are often biggest for linguistically and culturally diverse families.

Our experience in a unique multisite partnership between pediatric primary care and early childhood services gives us a unique perspective on the complex system of early childhood special education. We serve a diverse population: 25% of our patients have Spanish, Somali, Amharic, or Oromo as a first language, and an additional 20% speak another language that is not English.

Harborview Pediatric Clinic, Odessa Brown Children’s Clinic, Sea Mar’s South Park Clinic, and Childhaven partner to improve care for the diverse families served by these medical homes. We began our work four years ago based on community desires for staff who reflected the language and culture of the families served by these clinics and for culturally adapted early childhood screening tools.

Public schools are responsible for special education services for 3-to-5-year-olds. The federal Individuals with Disabilities Education Act requires schools to provide timely evaluations and services to any child 3 years and older who might have a developmental delay or disability. But across our state’s 295 school districts, families face entrenched systemic barriers to access these services. The process is archaic and complex. The paperwork is extensive and confusing. Families routinely have to repeat screenings. There is little support for non-English-speaking families. Delays are common and waitlists are long.

While these barriers have existed for years, COVID-19 exacerbated the situation; few evaluations were performed during the pandemic, and consequential delays became commonplace. 

One systemic failure is timing. Families referred to services during spring are placed on a waitlist for fall because schools close during summer. 

Working alongside families in South Seattle and South King County, we see how these barriers limit the care children need and families’ desires. For example, 3-year-old Maya is one of the 44% of our partnership’s patients who speak a primary language other than English. During a routine checkup last spring, Maya’s parents shared concerns about her behavior and development. Maya’s speech was delayed, which led to her not being able to communicate her feelings and needs. Screaming and tantrums were common and overwhelming.

Maya’s parents were worried about their child’s delay but eager to start the path to improvement. With consent, we made a referral to their school district for special education services. Then came the waiting and barriers. More than eight months passed before Maya’s parents were informed that Maya could start the services she needed. In addition to waiting for services, her parents were subject to complex procedures and paperwork they couldn’t understand due to lack of translation. 

Maya’s case is not unique. We regularly sit in the doctor’s office with families, listening to their pain and confusion about early childhood special education services.

Research reveals striking disparities, including lower screening, referral, and enrollment rates, and subsequent delays in diagnosis and receipt of services, for children of minority race or ethnicity, children in households speaking a language other than English, and less-educated or lower-income parents. 

In particular, Latino children nationwide are diagnosed with developmental delays at lower rates compared with white children (according to the Centers for Disease Control and Prevention), and the difference is particularly notable in households where English is not the primary language. Even among those who do receive services, Latino children are more likely to experience delayed entry into services than their white peers, according to research published in the journal Clinical Pediatrics

Children with delays who do not get timely and robust developmental services start kindergarten behind. This has far-reaching impacts on our youngest learners and can last a lifetime. Delays in services means society loses out on the economic returns of investments in childhood development.

We call upon Washington legislators to enact both short- and long-term solutions:

House Bill 1109, introduced by Rep. Tana Senn (D-41), will provide summer funding for schools to complete evaluations and service plans. This will reduce longer-than-ever waitlists. Legislators should pass this commonsense bill and fund it in the budget. 

Community-based providers of services for infants and toddlers with delays and disabilities also need better funding. Identifying delays before age 3 leads to better outcomes and reduces the need for special education. Legislators missed the mark when they didn’t pass House Bill 1676, but they still have an opportunity to fund a portion of the bill in their final budget, following the lead of the House budget.

Systemic changes are also needed for families to receive equitable access to early childhood special education:

Families should not go through the same steps twice. A screening at a clinic or child care center should lead immediately to an evaluation; duplicate screenings add unnecessary frustration, barriers, and time, which alienates families.

Screening tools need to be adapted to be responsive to the cultural diversity of families. 

Paperwork should be reduced, and widely accessible communication tools, such as text messaging and shared electronic records, should be offered to families. Fewer blurred photocopies, pieces of snail mail, and faxes would be a good start. 

All primary care clinics should have culturally and linguistically diverse health care teams so families navigating the complex special education landscape can be joined by providers who understand their culture. 

Schools need more staffing to help families navigate the system. Better language access and peer navigators would help families.

And more cross-disciplinary partnerships between providers can guide families through new terrain. No family should feel alone in their pursuit of their dreams for their child. 

The actions of Washington legislators today can create a better tomorrow. What happens early matters.

Fernanda Martinez Novoa worked for four years as an early childhood developmental navigator, as a member of a partnership between Childhaven and three pediatric clinics that serve a large number of low-income populations and People of Color (Odessa Brown Children’s Clinic, Sea Mar’s Seattle Medical Clinic, and Harborview Pediatric Clinic). Currently, she works as Childhaven’s public policy specialist and is a public policy fellow of Pathwaves Washington.

Dr. Abigail Grant is a pediatrician at the University of Washington-Harborview Pediatric Clinic and founder of an early childhood/medical home partnership. The opinions expressed here are her own and not representative of UW Medicine.