Children with Medical Special Needs: Considering the Impact on Child Development

Research shows that, as a group, children who are adopted have higher rates of special needs than their peers.[1] For some parents, they are aware of these needs before adoption. For others, the special need may not become apparent or may not be diagnosed until well after the adoption is completed. Some special needs, especially those that are physical, are incredibly straightforward and provide a clear path to treatment, at least for the physical component. However, are there “add-on” effects that parents need to consider? This Adoption Advocate will address that question, considering what the impact of medical special needs may be on child development. It will help parents and prospective parents understand that special-needs parenting involves more than managing a medical condition; it also requires observing and managing development across multiple domains and throughout childhood.

Prevalence of Medical Needs in Adopted Children

Data from the National Survey of Adoptive Parents found that 39% of adopted children have special health care needs (as compared to 19% in the general population).[2] This increased rate can be attributed to a combination of factors, including a lack of access to healthcare prenatally and before adoption, poor prenatal nutrition, and inadequate protection from exposure to substances and toxins. Additionally, and more specifically for children adopted from foster care, there may be increased exposure to adverse childhood experiences (ACEs). ACEs are typically traumatic events that can have a negative impact on an individual’s health and include things like abuse and neglect, exposure to violence, natural disasters, housing or food insecurity, and inconsistent caregivers.[3]

Over the past 20 years, there has also been a marked increase in the percentage of children with special needs in intercountry adoption. NCFA’s Profiles in Adoption national survey of adoptive parents included a sample of 4,212 adoptive parents—representing 4,135 households and 6,608 adopted individuals, including 2,115 intercountry adoptions. Data showed that the percentage of intercountry adoptions considered special needs increased dramatically, from 7.3% in 2000 to 61% in 2020.[4]

Impact on Developmental Milestones

Developmental milestones are touchpoints or benchmarks that include skills and behaviors that children typically achieve at a certain age. Milestones are by no means set in stone, and there is a wide variation in when children achieve them, even in a “typical” pathway, but they do provide general guidelines. If children begin to deviate quite far from these milestones, it can be a cue to parents and doctors that extra support and resources might be needed in a specific area. Most charts of developmental milestones break them into four domains: social/emotional, language, cognitive, and physical development.

There are multiple reasons to expect that medical needs might impact the achievement of developmental milestones. For example, a child with a physical condition that affects language production, such as a cleft lip/cleft palate, will most likely not reach language-related milestones at the same time as their typically developing peers. Children with special needs may also miss out on opportunities for development. A child who is not able to attend preschool regularly due to frequent doctor visits or poor health may not reach certain social/emotional milestones at the same rate as their peers. Hospitalizations may also impact a child’s development. A longitudinal study of children starting school examined admitted hospital data along with an assessment of early childhood development. They found that “Hospitalization prior to school start was associated with increased risk to development, for children with and without chronic health conditions.”[5] For children with chronic health conditions, as the number of hospitalizations and length of hospital stay increased, so did the risk of developmental delays.

Examining the developmental domains independently can help identify where intervention might be necessary. Children often progress at different speeds across different domains. For example, a child might be 3 years old chronologically, but their physical development may be closer to that of a typical 2-year-old. In contrast, their cognitive development may resemble that of a typically developing 4-year-old. Examining development across domains can provide a lens for identifying both children’s strengths that can be built upon and areas that need improvement.

Social/Emotional Milestones as a Case Study

Below, we use the example of social-emotional development to examine how milestones in a child’s life can be impacted by medical special needs. These milestone examples are taken from the Centers for Disease Control and Prevention’s developmental milestones[6] and positive parenting tips.[7] This exercise is not intended to be exhaustive of all possible impacts, but rather to provide a framework for examining developmental milestones across all domains within the context of medical special needs. This perspective can help parents and prospective parents view their children through a new lens as they grow. By keeping developmental milestones front of mind and considering how they may vary, it becomes easier to identify where a child and family might need extra support and resources.

Social/Emotional Milestones

What Parents Can Do

As all the above examples hopefully demonstrate, the most important thing that any parent can do regarding their child’s development is simply to pay attention. This does not mean to panic or feel the need to be hypervigilant, but rather to have a general sense of how a child with typical development progresses through milestones and be able to determine where your child stands in relation to that typical development. There are many available tools to help with this. For example, the CDC milestone chart used above also provides access to a free Milestone Tracker App.[8] Additionally, after each age range, they provide a series of tips for helping your child learn and grow.

Your pediatrician should also be your partner in this endeavor. This can be an instance when having an adoption-competent medical provider is especially important, as they are more likely to understand the over-representation of special needs among adopted children, as well as the interaction between those special needs and child development. A list of adoption-competent medical providers can be found here.[9]

As your child grows with your family post-adoption, it is crucial to become familiar with available services. Concerning children’s health care needs, one of the key takeaways from NCFA’s Profiles in Adoption is that “Adoption professionals should help normalize for adoptive families the need to obtain services post adoption” (p. 17).[10] Different resources are available for children at different ages. For children ages three and below, early intervention services are mandated by Part C of the Individuals with Disabilities Education Act (IDEA). Early intervention refers to the array of services available to babies and young children (0-3 years old) with developmental delays and disabilities, as well as their families. Examples of services your child can receive through early intervention include speech therapy, physical therapy, assistive technology, and nutrition services. You can find your state’s early intervention contact information here (many states refer to this process as Child Find). For a step-by-step introduction to early intervention, visit the Center for Parent Information & Resources overview.

When your child ages out of early intervention services, they transition to Part B services, which are available until age 21. While early intervention services are primarily family-focused, the school becomes more central when children begin to be served by Part B. For early intervention, services are guided by an Individualized Family Service Plan (IFSP); the guiding document once the child turns three is an Individualized Education Program (IEP). See this resource for an overview comparing Part B and Part C.

Conclusion

When raising or considering raising a child with special needs, those needs can at times seem to require all available energy and focus. However, it is also important to remember that there may be impacts on your child’s development that should not go unnoticed. Our hope is that this Adoption Advocate serves as an example of how to examine different developmental domains and consider how they may also be impacted by various special needs in distinct ways. By paying attention and noticing potential areas of challenge, parents put themselves in a strong position to access resources and supports early and effectively.