Medically Complex Adoption: An Overview of a Specialized Resource
By Jennifer Kelly
Jennifer Kelly is a Program Coordinator with Advocates for Children and Families (ACF+), a non-profit organization licensed to provide adoption services and programs focused on the well-being of children and families since 1992. Jennifer has been invited as a guest author for the Texas Transcript to share her experience and expertise with adoption. In 2012, Jennifer adopted a newborn baby girl, Joy. Jennifer knew Joy would be born with 22q11.2 Deletion Syndrome and several heart defects, but she had no idea how much her daughter would tilt the axis of her universe. Jennifer is a molecular biologist and was teaching at the time of Joy’s birth and adoption. However, after witnessing first-hand the gaps in care she experienced through her adoption process, Jennifer left her degree field to specialize in medically complex adoptions and is now a national expert. Joy lived a full but short 14 months. Jennifer is grateful for the opportunity to be her mother and now works with families and professionals in Joy’s memory and honor. We are honored to learn more from Jennifer about medically complex adoption and how we, as genetic counselors, can help families facing medically complex diagnoses.
Jennifer Kelly
Jennifer’s Adopted Daughter, Joy
Medically complex adoption presents a unique and challenging opportunity for medical professionals to support children with complex medical needs and their families. Medically complex adoption involves the adoption of children who require specialized medical care due to chronic illnesses, rare disorders, physical disabilities, or complex medical needs. These children often require comprehensive medical management, coordinated care, and ongoing support. Sometimes expectant/birth parents are unable or unwilling to parent the child. In these cases, a private adoption plan may be the most appropriate alternative to parenting.
Medical professionals such as yourselves play a crucial role in supporting birth/expectant and adoptive families throughout the processes of exploring and facilitating medically complex adoptions. By providing options on parenting alternatives, comprehensive medical evaluations, offering guidance on treatment options, and educating families on the unique needs of the child, professionals can empower families to make informed decisions and navigate the complexities of their child's medical care. By understanding the resources available to families, you can help them make solid decisions that work best for their families and children.
Birth/expectant parents may have reservations about considering an adoption plan. Cultural expectations, religious considerations, access to accurate information, unique grief, and trauma of an unexpected diagnosis all play a role in a family’s considerations of alternatives to parenting. Adoption will not be the right choice for every family, but it can be a vital resource for some. Adoption may give a birth/expectant family a viable alternative while also allowing them to remain a part of the child’s life- and the birth/expectant family in most cases get to decide how much contact they would want. They can also select the adoptive family, and this often helps the expectant/birth family feel that they have regained some sense of control.
Adoptive families have a variety of motivations when they begin to pursue medically complex adoption. They are often medical professionals, may already be raising children who are medically complex, are sometimes religiously motivated, and/or may have a personal connection to the medically complex community. These families do not consider themselves “special” in any way but rather are waiting anxiously to be selected to parent a child they would consider to be a miracle for their family.
When children who are medically complex are adopted through private adoption, they can qualify for special benefits. Adoption Subsidy Assistance is a program that gives a child Medicaid and a small monthly stipend (for expenses not covered by insurance) until they reach adulthood. This resource can be critical for adoptive families to manage the medical costs long term. From my own personal experience, forgoing this resource can lead to hundreds of thousands of dollars in medical debt which can cripple a family’s financial stability. There are only a handful of people trained to assist in securing this benefit for adoptive families, so make sure any professional adoption resource that is working with one of your clients knows how to secure these benefits for the child.
Misconceptions surrounding medically complex adoption can hinder the placement of children in need. Society often holds the belief that these children are burdensome or unadoptable. Small, local agencies may be unavailable to assist due to the tremendous liability and/or lack of experience in medically complex adoptions. Many believe that there simply are no families who genuinely desire to adopt a child who is medically complex. ACF Adoptions and the ACF+ Program are prepared to help families all over the U.S overcome these obstacles. In the past 10 years, I have personally assisted in thousands of medically complex adoptions. In fact, I have never been unable to find prospective adoptive parents- even on children who are extremely complex. With help from medical professionals, birth/expectant and adoptive families become advocates for the unique needs and rights of these children. By educating the broader medical community, policymakers, and society at large, we can dismantle barriers to adoption and promote a more inclusive perspective leading to positive outcomes for children and families.
Engaging in medically complex adoption has a profound impact on both the children and their families. By providing a stable and loving forever home environment, all types of families offer these children the opportunity to thrive despite their medical complexities. The bond that forms between the child and their adoptive family, and then between their birth and adoptive families in an open adoption (a type of adoption where the families remain in contact with one another), becomes a source of strength, support, and love which helps the child reach their fullest potential.
If you feel that adoption might be a reasonable consideration for a family, please feel free to refer them or reach out to ACF+ directly for assistance.
