There are a lot of factors anyone could consider while embarking on an adoption journey. Are you interested in adopting an infant or are you open to a slightly older child? What age range might be right for you and your family? Are you open to different races or ethnicities? What about a child from another country? What about a child with special needs?
In the United States, roughly 18.5% of all children under the age of 18 have some degree of special needs. But what does that mean? And what does that mean for adoption? Special needs adoption refers to the adoption of a child who has a medical or psychological need which may or may not be a lifelong condition. Special needs adoption may also refer to a child who is a member of a sibling group, or to a child who is older than the age of two. The exact age at which a child is categorized as a special needs adoptee varies by country, though. Some special needs adoptees are both over the age of two and may have a medical or psychological condition while others may simply be older children. A child’s special needs may be mild. Conditions such as cleft lip/palate, hearing loss, or missing digits, as well as more severe like cerebral palsy, Down’s Syndrome, or cystic fibrosis are all categorized under the umbrella of special needs.
Special needs adoption has been around since adoption began. In the United States, there are roughly 150,000 children currently in foster care categorized as having a special need. Foster children advocates list a particular demand for prospective adoptive parents open to waiting children with special needs. Many of these waiting children are older, members of a sibling group, have sustained emotional and/or psychological trauma, and may be a member of a minority racial group, or tribe. Adoption from foster care is a beautiful way to build your family and a great way to make a huge difference in the life of some of the country’s most vulnerable communities. For prospective adoptive parents interested in adopting from foster care, there are many assistance programs in place to facilitate the adoption. There are programs, like Medicaid, in place to support foster children’s ongoing medical needs and thanks to the 1997 Adoption and Safe Families Act, families who adopt foster children with special needs have even greater access to resources.
For prospective adoptive parents interested in international adoption, it is important to understand that almost all intercountry adoptions are of special needs children. Though special needs adoption may seem unfamiliar and intimidating to some hopeful adoptive parents, many of these children have mild, medically managable needs. When international adoption first became widespread in the 1960s, the children available for adoption were young, healthy infants. Stories of social workers flying halfway across the world, picking up the adopted child, then flying home, and meeting the new adoptive parents at the airport was the norm. As one social worker relayed, “I used to tell the new adoptive parents to ‘watch for the yellow blanket’ because that would be their son or daughter.”
In 1993, the Hague Convention on Intercountry Adoption was written. Intercountry adoption had been rising steadily, but the question of the ethics by which those adoptions were taking place was questionable. In an effort to safeguard against child trafficking and to ensure that every adoption was completed in the most ethical way possible, the Hague Convention put rules and procedures in place. One of the tenets of the Hague Convention is to make sure the children available for adoption are indeed orphans and that every effort has been made to place the child in-country before international adoption will be considered.
The U.S. became a signatory of the Hague Convention in 2008. As a result of signing the Convention, the children made available for intercountry adoption began to be older. In 2019, ten years after signing the Hague Convention, the U.S. Department of State found the average age at placement for children adopted internationally was 3-4 years of age. This is due to the fact that once the child enters institutional care, the state is required to find if they are indeed an orphan and then must make an effort to place the child domestically, both of which can take a lot of time.
There are many reasons a child may not be adopted domestically. One of these reasons is the child being a member of a minority ethnic group or tribe which may qualify the child as special needs. A child may not be adopted domestically because they require costly surgery or need ongoing physical or speech therapy that may not be widely available in the child’s country of origin. In many countries, access to reliable health care is not readily available. Many of these children’s special needs may be easily managed in the United States. It is not uncommon for special needs adoptees to be completely healthy except for what is considered to be their special needs. For those children with mild, medically correctable special needs, their special needs may dissipate or even disappear over time with proper medical care and assistance.
For those adopting internationally, when you embark on your adoption journey you will complete a home study. During your home study, you will be asked to consider a medical conditions checklist, or MCC. At first glance, the MCC may seem daunting–and yes, you may google half the checklist and discover rare diseases you have never heard of. It is important to review everything and then to have an open, honest conversation with yourself, and/or partner and decide what is doable for your family. If you live in a townhome with lots of stairs, a child with limited mobility may not be a good fit. Take time and consider what you are able to commit to and what you are not. Would you be able to take your child to ongoing medical appointments such as physical therapy or other specialty appointments? I would recommend that you have a conversation with your insurance company. What is covered? What expenses would be out of pocket? Do you live in a place where access to medical care is readily available, or would it be difficult to reach a large medical facility if necessary? What about your school system? What support might be available to you and your child there? Remember, what may be right for you may not be right for another family and that is okay. Having difficult conversations ahead of time means that you are better prepared to parent a child with special needs when the time comes. And moreover, you will need to include this information in your home study.
Following the completion of your home study, you will work to complete a country-specific dossier. Once your dossier is completed and submitted, you will be eligible to match with a child. Depending on your journey, you may have been waiting for months–or even years–for this moment. It can be extremely tempting to look at the child’s photo and immediately say “Yes!” but take a deep breath and consider. Read through the file completely and have a medical expert review your file. Countries vary in their terminology, and an international adoption doctor will know what to look for and know what questions to ask. Children adopted internationally are often physically and developmentally delayed, but this is completely normal and is to be expected due to the institutional setting of most children waiting for placement. It can be hard to turn down a referral but you will not be penalized. Remember that even if the child is the right fit for your family, the child may be the perfect fit for another family.
The time from accepting a referral to actually traveling to your potential child’s country varies from country to country. You may be booking flights a few weeks later or a few months later. One of the number one questions prospective adoptive parents have is “How do I survive the wait?” For prospective adoptive parents of special needs children, once you accept a referral, a great way to survive the wait and prepare for your new addition is to put systems in place to support you when you return home. Do some research and locate doctors for your child’s specific needs. Speak with your insurance company to get a better understanding of what is covered and what is not. Is there anything you can do ahead of time? For most health insurance programs, coverage for your child begins as soon as the adoption decree is issued (which, depending on the country, may take place before you even meet your child). Read up on your child’s special needs. What have been other families’ experiences? Are there support groups in your area for children with similar disabilities? If your child will be starting school, reach out to the school and/or your county and learn what accommodations are possible. For all students in need of support, you will need to file an IEP (individualized education plan) and those meetings may take time to schedule. It is never too early to start advocating for your child. As a parent of a child of special needs, you will play the role of an advocate frequently. And even if your child’s special need is mild and/or medically correctable, you will still need to advocate for your child because you are an adoptive parent.
Almost all children who are adopted have or will experience trauma. Whether the adoptive child was placed in your arms within seconds of their birth or they came to you after years, and possibly a decade or more, of life under their small belts, trauma and adoption go hand-in-hand. It takes time to build a bond of attachment with your child. For children who have special needs, this may take even more time. Depending on the child’s circumstances and their country of origin’s policies and procedures, they may have had multiple caregivers. Depending on the severity of the child’s special needs, they may have been left alone at their institution or they may have spent time with children with more severe needs. If the child has had to undergo multiple surgeries or spent significant time in the hospital, this too can influence attachment.
When you first meet your child, you may feel completely overwhelmed. You may hear stories of adoptive parents who saw their child, felt immediate love, and had no issues whatsoever (which is amazing). But more than likely, your time in-country will be rough. Your child may significantly feel the loss of their caregivers, they may be struggling with their special needs (this is particularly true for adoptees with cleft lip/palate), and you may find that the medical file you reviewed included some things but not others. It is not uncommon for a referral to misdiagnose a child, or for a milder issue to be overlooked. You might take a deep breath and repeat the mantra “my time in-country is not real.” This too will pass, and you will be home before you know it. Your support system, doctors, and other resources are there for you (because you were amazing and did this work before you traveled) and when you are home and settled is when the journey can truly begin.
Special needs adoption may seem daunting, but it does not have to be. When we first began our adoption journey, I was unsure if I could efficiently parent a special needs child. But the more I learned, the more I read, and the more I saw, I realized that these children’s biggest special need is a sense of permanency. Even the best institutional care is still institutional care. In my own journey, my family is now made up of two special needs children from two different countries. Their needs are not special needs we initially considered, but the more we learned, the more we knew we were the perfect parents for these two kids. Our lives are so much richer in our transcultural, transracial, transethnic home, and I would not have it any other way. My children’s biggest special need was a forever home–and that is us.
Jennifer S. Jones is a writer, performer, storyteller, and arts educator. She holds an MFA (Playwriting) from NYU Tisch. She has written numerous plays including the internationally renowned, award-winning Appearance of Life. Her amazing transracial transcultural family was created through adoption from China and India. She is passionate about the adoption community and talks about the ins and outs, ups and downs, joys and “is this really us?!” whenever she can. She writes about her experiences at www.letterstojack.com.