When adoptive families are asked, “What post-adoption support providers are essential to your family?” they often respond, “mental health, respite care or school advocacy services.” Medical providers typically are not at the top of the list or come as an afterthought when adoptive parents find themselves parenting a child with medical needs more complex than originally anticipated. It’s time to change the post-adoption service paradigm and recognize the importance of selecting and building a relationship with a medical provider who will act as a core member of the family support system.
Adoptive Families Have Different Needs
Why the fuss over selecting an adoption competent medical provider? After all, an ear infection is an ear infection. This may be true, but the needs of adoptive families are unique and well documented in professional literature. In a 2010 study of the health care experiences of families with an internationally adopted child, Eileen Smit, MSN, RN, identified four central themes that characterized new adoptive parents’ experiences:
- Coming home: Like a lobster thrown into a boiling pot. Families experience “an incredible number of changes in a short period of time.”
- Vigilance: Is my child healthy today and will my child be healthy tomorrow?
- Lack of thorough family or medical history.
- Unique health care needs: We are different.
- Importance of support by health care providers. Do they know or care?
Smit’s findings show us that adoptive families have different, complex layers of need which are in addition to those faced by newly formed biological families. Ideally, adoptive parents are searching for a provider who is trauma-informed and knowledgeable of the unique dynamics of adoption. Unknown or limited biological family medical histories, early life trauma including prenatal substance exposure; physical, emotional and sexual abuse; neglect; and frequent placement transitions impact a child’s overall health and development. The medical provider you select should be capable of providing high quality medical care in the context of your child’s unique history. A well-informed medical provider (or one who’s willing to listen and learn) can be a great asset to your family’s adoption support team. Your provider can be your link to early intervention, mental health or subspecialty care services. Accurate medical diagnoses often drive school based services and adjunctive therapies such as occupational, physical and speech therapy. For foster families, medical diagnoses often help determine subsidy agreements and shape future service arrangements.
The Role of Culture and Language in Medical Care
With an increase in the number of transracial and older child adoptions, culture and language is also an important consideration in the selection of a medical provider. While it may not be possible to find a medical provider of the same heritage as your adopted children, it is worthwhile for parents to investigate the possibility. The importance of surrounding our adopted children with individuals who share their racial or ethnic heritage is widely discussed among adoption professionals as being key to helping children feel included and building their sense of identity, according to “The Transracial Adoption Paradox” by Richard Lee. Additionally, prior to bringing home an older child from overseas, ask about the possibility of having an interpreter present for early medical visits. There are potential risks to the emphasis on culture and language in medical care post-adoption. Some parents have reported that children “shut down” or are “triggered” by hearing their native language after having gone a period of weeks without hearing the birth language. Additionally, many of our children adopted from overseas have had traumatic medical experiences prior to adoption. Accordingly, we can’t discount the possibility that a medical provider of the same race, speaking the native language of the child, could trigger a fight, flight or freeze response in the child.
Building Your Medical Care Team — It’s All About Relationships
After considering the obvious insurance and geography restrictions, families often find themselves wondering how to begin to narrow the search for a medical provider. One of the best places to begin is by talking to other adoptive parents. During the homestudy process you should work to connect with other adoptive families in your community who likely have valuable input into the selection of a provider. Prospective adoptive parents should also utilize their family and friends with non-adopted children as referral sources given that all children benefit from high quality providers who have a knack for listening to and developing relationships with families. For parents who currently have biological children in the home, the obvious place to start is with your current pediatrician. That said, families with an existing medical provider should be open to changing providers for their adopted child if necessary. After obtaining some word of mouth recommendations from friends, family and fellow adoptive parents it’s important to take the next step and speak with multiple providers prior to the adoption. Some pediatrician offices are now offering limited appointments for “expectant parents.” If this is not an option, take time to visit the office staff and pick up information face to face on office hours and policies. Ask if it’s possible to speak with an office nurse by phone prior to becoming a patient. Poor office management and inconvenient hours will negatively impact your experience and it’s important to sort this out prior to your adoption when possible. The vast majority of pediatric medical providers enter into the profession because they want to help children and families. Pediatricians, nurse practitioners and physician assistants face barriers to providing services that patients and families don’t always understand. Insurance restrictions, caution and cost surrounding malpractice, and the day-to-day management of patient crises all impact the amount of time and scope of service a provider is able to offer their families. Accordingly, it’s worthwhile as adoptive parents to do everything within their power to understand the “system” so they can obtain the best medical care possible for their child. Part of this involves speaking with your insurance company so you can understand the limitations of your health benefits prior to accessing medical services. Medical Care — It’s a Marathon, Not a Sprint Bringing a new child into your family is overwhelming. Parents have a tendency to come to the first medical appointments with a sense of urgency to address all known and potential medical needs in short order. When you try to tackle too much in one appointment it is overwhelming for the child and the parents are often left feeling like they weren’t able to explore any concerns in a thorough manner. Accordingly, consider scheduling multiple visits over the course of the first few months your child is in your home so you can spread out the work and lay the foundation for forming a solid relationship with your medical provider. Every medical provider has a story or two to share about the time a patient or parent mentioned something critical the moment they had their hand on the doorknob as the visit was coming to a close. By making a list of your top two or three concerns to discuss in each visit you are establishing the structure of the visit and will be more likely to walk away from your appointment feeling as if you have an increased understanding of your child’s medical needs. Additionally, multiple visits over the course of the first six months after your child’s placement will allow your provider the opportunity to get to know your child and family, as well as to observe the progress of your child’s attachment and development in the context of being in a new family.
Establish Yourself as the Expert Advocate in Your Child’s Care
Over time you will learn more about your child — how they function, their strengths, challenges and medical conditions — than anyone else. Yes, your medical provider is an expert on providing medical care, but YOU are an expert on your child. While it’s critical that you are open to hearing provider input on your child’s medical care it is equally important that you are a well-informed consumer. For example, if you have a child with Fetal Alcohol Syndrome it is important that you research evidence-based Fetal Alcohol Syndrome care. Please be discriminating when it comes to evaluation of therapies, but don’t be afraid to explore and ask questions of your provider if you find something that may be useful to your child. If you learn of resources that are helpful to you and your family share those with your medical provider. Your provider will learn from your experience and help other families accordingly. The following are just a few places you can begin your research on the medical needs of adoptees:
The healthcare approach with newly adopted children does not fit nicely into the traditional pediatric care system. Parents must take on the role of advocate from the outset. Providers must be willing to listen and learn about the special needs of our families. By working together in small but regular steps, and taking the time to get to know each other, the children and parents [and providers] can keep moving forward on the oftentimes bumpy but always interesting road that is family. Shelly Roy, LCSW, is the program coordinator of the University of Chicago’s Adoption Center. Roy is a licensed clinical social worker and an internationally adoptive parent. She has been working with adoptive families professionally for 10 years providing a variety of services including medical case management, family therapy, parent education and support group facilitation. Roy’s professional focus is the impact of early life adversity on child behavior, learning and development. Linda Walsh, FNP, is the clinical director of the University of Chicago’s Adoption Center. Walsh is a family nurse practitioner specializing in pediatric infectious disease. She has provided comprehensive trauma informed medical care to adoptees for the past 12 years. Walsh utilizes her understanding of the impact of early life adversity on the developing brain to assist foster and adoptive parents in developing the skills they need to help their children flourish.