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The System Is Broken for Foster Kids With Disabilities

I found myself in tears yet again today. I thought I knew what to expect. I thought I knew how to live in a place of empathy and love and compassion. But, I was completely caught off guard today. I have been the parent of a child with autism, and a different child who has muscular dystrophy. I was a special education teacher for many years. I am now the principal of a school for individuals with autism. I have worked with tons of bureaucratic systems. I have always gotten my boys what they need. I thought I knew what was required of my heart.

And then I became a foster parent. Nothing can prepare you for how broken this system is. Nothing. Today, as I put a beautiful blue-eyed child down for a nap, he looked at me and said in his tiny voice “Where is my family?” In that moment, I was shattered. I didn’t know. I didn’t know what all his needs were or why he had moved to us after four other moves in less than a year and a half. My list of things I know about this little boy is much smaller than the list of unknowns.

I see a little boy who needs love, stability, and consistency. A little boy who will call any female caretaker “Mama” and who wonders where his brother and sister are. A little boy who needs boundaries and the chance to show the world his amazing personality. I see a little boy in need and at risk of falling hopelessly behind.

The bureaucracy sees a little boy at great risk. A little boy who needs developmental preschool along with all the accompanying services: speech, occupational, and physical therapies. A little boy who probably needs behavioral health services, a developmental pediatrician consult, a host of experts I am familiar with (developmental disability services, for example) and some I have only learned about when I entered this world (guardian ad litem, for example). The system sees a little boy who should live with family if possible. Evidently, in his case, it isn’t possible, but how those decisions were made is not information I am considered entitled to receive.

After being in care since the fall of 2015, this little boy didn’t come to me with a list of previous placements, doctor visits, or enrollment in school. I wouldn’t know anything about his previous placements if I did not comb through his preschool special education evaluation and IEP. I wouldn’t know anything about his siblings if his previous foster mother hadn’t included a note and mention of a brother. I know he was born 12 weeks early, but I don’t know if he has any medical needs. He came with an inhaler, presumably for asthma, but other than reading the prescribing information I don’t know anything about it. I don’t know if there are other medications he needs. He came with one pair of glasses and three boxes of broken glasses. If it wasn’t for the special education evaluation, I wouldn’t know he is extremely far-sighted. This is a little boy with obvious developmental delays, but he did not come to us with clear answers.

The bureaucracy does not work the way it is supposed to. After being in care for as long as he has been, he should have come to us with a lot more information. A society should be judged based on how it cares for the most vulnerable. Most of the time, in this world of a broken system trying to help struggling families, I think we are doing a terrible job.

If I had a magic wand, I would create a different system — one focused on prevention to stop as many children as possible from entering foster care. For those who still needed the care, I would make a system to look at each child as an individual. I would identify those children most at risk of developmental delays (possibly because of trauma) and provide extensive early intervention customized to that child immediately. I would aim for stability of placement and treat foster parents as partners working for the good of the child. I would revise the training for foster parents to focus on the realities and not the gumdrops and roses viewpoint a lot of our training focused on. I would provide foster parents with as much information as possible so they can advocate and intervene effectively for the child.

But that world doesn’t exist. I focus my efforts on the children who come into my home and on areas of influence I have related to prevention. I think a lot about our society and the care it provides to the most at risk.

I have to carry on. I have to provide an engaging home, care for his needs – known and unknown — and provide him with love and consistency. I have to look at that little boy and see not all the things he cannot do, but see the possibility. I have to figure out where his developmental delays are and move heaven and earth to get him whatever services he needs. I have to tape my shattered heart together and tell myself I can do this. I have to look at those blue eyes and tell my heart it is OK to fall in love. The cost of not doing so is far too great.

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Thinkstock image by Tatyana Tomsickova.