Sharing the Perspective of Prospective Adoptive Parents with Disabilities

Last week, the Congressional Coalition on Adoption Institute was honored to co-host a policy briefing with the Bipartisan Disabilities Caucus, National Council on Disability, Child Welfare League of America, National Association of Social Workers, and the American Psychological Association.

The briefing focused on adults with disabilities as a recruitment resource for children in need of families, and highlighted Chapter 10 – The Adoption Law System of the recent report by the National Council on Disability (NCD) titled “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children”. The report details how prospective parents with disabilities are often denied the opportunity to open their hearts and homes to children who desperately need them.

One of the panelists, Colleen Gioffreda, has been the Little People of America’s Adoption Coordinator for the past ten years, and has helped facilitate the adoptions of over 200 children with dwarfism.  She created the Little People of America (LPA) Adoption website, as well as the LPA Adoption Facebook page which educates potential parents about adoption in general, children with dwarfism who are currently available for adoption, and what resources are out there to help make an adoption possible.

Colleen’s testimony at the briefing was quite compelling, so we want to share it with you here:

Good morning,

My name is Colleen Gioffreda, and I am the National Adoption Coordinator for Little People of America, or LPA.  LPA is a nonprofit organization that provides support and information to people of short stature and their families. We have more than 6,000 members, and are the world’s largest organization for people with dwarfism and their families. Founded in 1957, LPA strives to offer the support and resources necessary to empower all people with dwarfism to reach their full potential.

The LPA has had an adoption coordinator position since 1961.  Adoption has long been a significant part of LPA’s culture.  Within my generation of LPA, approximately 40 percent of the children who have parents with dwarfism have been adopted.  Compared to the approximate rate of 2.5 percent of all US children adopted, (http://www.pbs.org/pov/offandrunning/adoption_fact_sheet.php) 40% is a much higher portion of adoption children within my generation of LPA.

My personal story is that I kind of fell into adoption after getting a phone call one day that a little girl with achondroplasia needed a family – were we interested?  My husband and I had not considered adoption at that point in our lives – we frankly thought that we couldn’t afford it yet.  But, it was meant to be, and we adopted our now 12 year old daughter, who is amazingly smart and compassionate and who cannot wait to be a teenager, although her parents certainly can.  I ended up helping out the adoption coordinator for LPA a few months later, and then eventually took over the position around ten years ago.

There are many reasons why people within LPA want to adopt.   One reason is that it is difficult for some people with dwarfism to carry a pregnancy, because of spinal stenosis or other health issues.  Another reason is that average stature parents decide to adopt a sibling for their child with dwarfism so that they may grow up together and have similar experiences.  Other adoptive parents make a connection through our adoption website with a particular child and feel that they are destined to be a part of their family.  The main theme that I see, however, is that people with dwarfism are proud of who they are, and want to share their positive lives with their children – adoptive and biological.

Regarding domestic adoptions, I have been involved with several adoptions where the parents with dwarfism met challenges along the way.  Allison and Tom, from Georgia, were interested in adopting their 4th child, and were on my “Waiting Parents” list.  I received a call from a foster care agency in Denver, who had a little boy with Spondyloepiphyseal Dysplasia (or SED), who also had a tracheostomy.  I talked at length several times to the social worker, who was enthusiastic about hearing about the couple, and who expressed that she thought they were a great match.   She changed her mind a few days later, after discussing the types of dwarfism they had, and told them that they were not going to be a match after all.  She called me and told me that she didn’t think that they could “handle” a child with a tracheostomy – since they were so short, they wouldn’t be able to help him with his equipment.  I do not believe she thought that I had the same type of dwarfism that they had.  They appealed, and then appealed again, but lost both times because we were told the foster mother apparently wanted to adopt him after all.  This was years ago, and I believe that he never was adopted by his foster mother.

Adopting foster children has been impossible for LPA members, so far.  We have had a total of 12 foster children that had families through LPA, but none were adopted. Not for not trying several times, though.  One boy, Jonathan, was from Texas.  He was 15 when Mike and Kim began to attempt to adopt him.  He aged out of the system – they attempted to adopt him for 2 ½ years, but he never got out of foster care.  We don’t know if it was because Mike and Kim had dwarfism, or if it was because Jonathan had numerous social workers that never seemed to talk to each other.  Mike and Kim were extremely disappointed, and then turned to International adoption, where they eventually adopted 3 additional children, making their family complete at five children all through adoption.

Rachel and Joseph are a couple who live in North Carolina, who have been on my waiting parent list for many years.  They are licensed as foster parents, and have told the agencies that they will take any type of child with any type of special need.  They have fostered a child only once, and he was placed back with his birth parent soon after they began to foster him.  They have been waiting for 17 years to adopt a child.  17 years.  You can imagine the frustration that they have experienced – they have done everything that they have needed to do for their paperwork, and yet they still wait.  Rachel has an undiagnosed type of dwarfism and Joseph is average stature.

LPA has found many more children adopted through International adoption than through domestic adoption, but even that has proven to be difficult at times.  LPA has had adoptive children through over 20 different countries – the highest numbers of children who are adopted internationally come from China, Korea, the Ukraine, Bulgaria, and Russia, previously.  China has a special needs program which includes dwarfism.  Chinese children with dwarfism available for adoption are typically abandoned between 6 – 12 months, when the diagnosis of dwarfism becomes apparent.

Although China has strict eligibility requirements to adopt, we have found very good agencies that have been able to work around China’s requirements, just as long as the parent’s disability matches the child’s disability.  In other words, a person with achondroplasia, like me, would be able to adopt a child with achondroplasia, but not a child with Downs Syndrome.  The agencies that have helped us ensure that the parent’s disability matches the child’s disability on paper – for example, even if the child really has achondroplasia, her paperwork may say that she has Rickets, or dropsiness of foot ( a diagnosis I’ve seen in a child’s file before) or something else.  The parent will have that diagnosis too – perhaps in parentheses next to their true diagnosis.  We have also helped to get around the BMI requirement by using BMI curves specific for people with dwarfism, instead of using standard curves.

We have come across agencies that are not willing to fight these small battles.  Sharon and Joseph, who had paid about $10,000 to an agency to adopt their daughter Ying, were told that China denied them to adopt her.  The agency refused to appeal, saying that China’s rule was the rule, and that they should not pursue another child through China.  Instead, Sharon and Joseph waited until their daughter was not exclusively represented by that agency, and found her again through another agency, which had no issues in explaining the situation to the CCCWA. (China’s child protection agency in charge of adoption).  Ying has now been with her parents for 3 ½ years, a very happy and very expressive 9 year old American girl.

Another couple, Matthew and Charlotte, who adopted from China 2 years ago, had a similar experience with an agency, and were told that it looked like they wouldn’t be able to adopt from China after all, after spending thousands of dollars toward adopting their daughter.  They went to a different agency, and with some ingenuity, sent pictures to China from the chest up, because they were fearful that china would reject them due to Matthew’s very small stature.  Their daughter Lillian is a beautiful, happy little girl who is thriving in school.  In China, she most likely would not have had the opportunity to go to school, due to her dwarfism.  In the United States, she can become a doctor, or a lawyer, or anything else she chooses.

In China as well as other countries, sometimes discrimination can be a problem, but also, just getting around the country itself can be the challenge.  We have many members in LPA with mobility issues, and being able to navigate inaccessible sidewalks and streets proves to almost be impossible.  Notice I said almost.  Still, our members overcome these challenges in order to bring their children home.  International adoption, with all its challenges, is still easier in the long run than adopting children out of foster care.  And I really hope this changes someday.

Although we have faced many challenges with adoption in our community, adoption is still a huge part of our culture.  In the past ten years, we have helped approximately 200 children with dwarfism find their families.  LPA is proud of our community and view raising children with dwarfism as an amazing and wonderful privilege and experience.  I’m in the middle of raising four children, all with dwarfism, and I wouldn’t want my life any other way.  Except maybe the amount of laundry.

About ccainstitute

The Congressional Coalition on Adoption Institute is a nonprofit, nonpartisan organization dedicated to raising awareness about the millions of children around the world in need of permanent, safe, and loving homes and to eliminating the barriers that hinder these children from realizing their basic right of a family.
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