Impact Feature Issue on Children with Disabilities in the Child Welfare System

Our family is pretty unique. Our children are a mix of races and abilities, ranging from age 2 to 31 years. And there are lots of them – 11 to be exact. Even now when we travel in a pack of eight we cause lots of neck craning. Most people make admiring comments, but occasionally the looks are not friendly and are more along the lines of “the circus just arrived.” We are quite used to it, although my husband, Mark, prefers anonymity and sometimes feels like the bug under the magnifying glass. Generally, we forget what a sight we must be.

We became foster and adoptive parents in the early 1980s and have continued caring for children for almost 20 years. We have cared for about 25 children through foster placements. Most of these children have had special needs. We have also adopted nine children. Some of the children we have adopted were our own foster children, others were in foster care with some of our friends and still others we found with the help of the Internet and interstate foster and adoptive care systems. Our family began with our first biological son Conor in 1980. Three years later we adopted Chad, who has Down syndrome and was eight at the time. Seven months after that Jonathan was born. In 1984, Kelsey joined us at four months of age, and in 1986 Melissa arrived from Korea at 13 months of age. We settled in for a while before Christopher joined us as a foster newborn and became Reeves #6 in 1990. In 1997, Shannon joined us at 11 months of age and we knew she would bring some challenges with her. Over the next year or two Shannon was diagnosed with cerebral palsy, a seizure disorder, and a visual impairment. She had a gastrostomy-tube permanently placed for feeding and received the general diagnosis of developmental disability. She has been, by far, our most physically challenging child and the most beautiful blue-eyed blond who has all of us, especially daddy, in the palm of her hand.

We jumped on the fast-track adoption train again in 2001, adding the first of our four African-American children. Ella was just six months old and came from Michigan. She is quite precocious and has a charismatic personality. Without Ella we may never have cracked Callie’s shell. Callie came in 2003 at two-and-a-half years of age. As a consequence of spending the first nine months of her life in intensive care without family to cheer her on we have been dealing with reactive attachment disorder. She is an inspiration as she shows the strength of the God-given human spirit to survive, and to learn to love, express emotion, and trust after knowing nothing but a lack of all those. The end of 2004 brought us our first sibling group, although not biological. Jacob was two years old and Christian was seven years old. They were foster siblings in a very loving foster home. They were both premature little ones. Jacob has since caught up in his developmental milestones, but Christian continues to deal with delays in all areas of development. He learned to walk shortly before coming to our family because, according to his foster family, Jacob walked and sibling rivalry got the best of him.

As you can imagine it takes more than just Mark and I to meet all their special needs. Having so much experience helps, as does having adult and teen children who are nonplussed by their siblings’ extensive needs. For us, this is normal. Even so, it can be exhausting to identify support needs, locate providers, and start services for each new arrival. This can be challenging for us even though we know where to go for the help we need. We have learned many valuable positive and challenging lessons in our years of fostering and adopting children who have disabilities.

We have worked primarily with public child welfare agencies; however we have worked with private agencies as well. Perhaps the most difficult part of our foster and adoptive processes was working simultaneously with social workers from two different systems: child welfare and disability services. When you add the out-of-state component, things become even more complex. The adoption or foster care workers typically worked in different buildings than the disability workers. Sometimes all the workers did a good job of communicating with each other (and us) and other times it was cumbersome and challenging. Our best experiences were when we had a “team” because we could all discuss our child’s needs, address barriers, and work on conflicts that arose due to multiple system involvement. The team consisted of the child welfare worker, the disability worker, a previous foster parent (if there was one) who knew our child’s support needs, and us.

Another challenge we faced many times was being asked by child welfare agencies to consider fostering or adopting a child without sufficient information to make a decision. We’ve had enough experience to know what we can handle and what we cannot handle. Without the proper information, our decision is impossible to make and a placement might be made and consequently disrupted simply because we were not given the full picture. We were told one time that we had been chosen for an adoptive placement for a child we knew nothing about. After asking just three questions I knew our family could not serve that child well. Lots of time could have been spared had the social worker simply given us some basic information in a phone conversation.

Medical aspects of the children’s care can be complex, entailing both positive and challenging experiences. Christian and Jacob had a fabulous social worker in Texas who was extremely conscientious and sent us every piece of paper ever written about them. The University of Minnesota’s U Special Kids program – a Department of Pediatrics program that provides care coordination to children with complex medical problems – graciously condensed piles of Christian’s medical reports into a seven-page medical profile. This was very helpful for communicating with other support service providers. A challenging part to providing care for our children is handling all the paperwork and learning the funding streams. Adoption subsidies provide monthly stipends for the care of the children. Medical Assistance provides financial support for the children’s medical needs. When we adopted Christian and Jacob we had to work through two state systems. Although Minnesota agreed to provide Medical Assistance for the boys, formal applications still had to be submitted and six weeks passed before they were approved. Meanwhile, due to their medical issues and prescription needs, we spent about $500 out-of-pocket. We were fortunate to have the resources to cover those expenses while waiting for reimbursement, but not all adoptive and foster parents do.

When we adopted Shannon we had written into her adoption subsidy contract that she might need a ramp one day to get her into our home. As she grew and the need arose, we approached the state subsidy office (yet another governmental agency) about our need for a ramp. They informed us that two estimates would be required before they would assist in the payment. The two contractors said an elevator was the only alternative for our house as our entry was too steep. Then, the subsidy office referred us to a consultant specializing in accessibility to reassess the situation. We had to attend several subsequent meetings only to be told that subsidy dollars couldn’t be used to pay for an elevator. This meant we needed to finance $30,000 (which we did) as a second mortgage on our home. Only then did our county disability worker inform us that we might be able to get a different type of funding to pay for the elevator. Funding was available through a one-time grant, available only if there is excess money in the county budget at the end of the year. Ultimately we were able to work within the system to get a $20,000 reimbursement. That experience was very frustrating, expensive, and time-consuming. Why wasn’t the accessibility consultant involved from the start? Why didn’t we know about the one-time grant funds? All we wanted was to help our daughter safely enter her home.

We have had many social workers, medical providers, and other professionals involved in our lives and the lives of our children over the years. We have watched policies and funding change, and for the changes that improved our lives, I am grateful. However, some changes made no sense or are too complicated. Many of us who parent special needs kids are, frankly, too tired at the end of the day to send e-mails or call our representatives. We look to the social workers to advocate for good outcomes for our kids.

As I personally hit the half-century mark I am heartened by how far we have come and am hopeful as to what lies ahead in our children’s lives. What we do for the “least of these” as a society will tell the story of what kind of human beings we were.