The Stauffers are satisfying to judge: They curated a public view of themselves as gorgeous and altruistic and turned glimpses of their lives into a business. Once their image shattered, people felt betrayed and appalled. But the real scandal is not one vlogging family; it is the fact that parents of special-needs children are desperately underserved by systems designed to help them.
I don’t know the Stauffers, but I feel qualified to reflect on issues related to their decision. My husband and I had two biological children before adopting a child with special needs from China. I don’t know a family with a special-needs child who doesn’t sometimes feel like the issues are more than they can handle. Our daughter’s condition was more serious than we expected; it both tests and enriches our family every day. For all the problems with the term “rehoming” — it sounds like the handing off of a difficult pet — families around the country, for various reasons, send their children with complex needs to live in other places, sometimes for life.
Consider some things about safety-net systems for those with special needs that make them less than a reliable backstop.
School districts must provide “a free and appropriate public education” for children with special needs, thanks to 1975 legislation later known as the Individuals With Disabilities Education Act. Most Americans have no reason to know how grossly underfunded, understaffed and inconsistent the special-education system is. Most states receive less than 15 percent of their special-education funding from the federal government, far less than the 40 percent originally promised. So school districts and counties do what they can afford, with no standardization from state to state or district to district. Families can either accept mediocrity or sue their public school district year after year to provide a decent education.
For my family, things as routine as a teacher-training day create chaos. Our life is a constant dance of trying to get our work done, tend to the needs of our adolescent sons and monitor our 13-year-old daughter in diapers.
Education funding varies by state. When it comes to special education, parents often fight for resources even in “good” school districts. States use different formulas to determine funding: Some use grants, some set a specific dollar amount for each child regardless of the severity of their disability, and some states reimburse school districts for their costs. My daughter is nonverbal; she receives two 30-minute sessions of speech therapy each week. Her speech therapist is wonderful, talented and dedicated. But an hour a week isn’t nearly enough to make real progress. An hour, however, is what is available and, in legal terms, “appropriate” under the minimum public school standards.
Health-care services for children with special needs are an exercise in patience and perseverance. Pennies come back on the dollar for therapies that are scientifically proven to improve the lives of kids with autism. My husband and I burned through our savings — about $200,000 — in the first year after our daughter was diagnosed. We chronically felt like failures when our money was running out and not only was she unable to utter a word but her tantrums were becoming more violent and unpredictable. I kept thinking that there had to be a system that would support us, but we continued in a free fall.
Special-needs families endure years of interrupted sleep and endless invasive medical tests. We have to fight for minutes of therapies in financially strapped school districts. Our children don’t grow up and leave home; they don’t launch into their own lives. Their victories are small: a fork at age 12, the bathroom at 13, the occasional “Mama.” I have wished many times that I didn’t know this reality, that my life was less complicated, that someone would come along and magically make it all better.
Instead of criticizing one family’s struggle, people should ask: Why couldn’t even that family, which had influence, income and fans, find the support they needed? How can our communities change so that families don’t reach a place where they feel they have to “rehome” or, in the grimmest cases, harm their children? The Stauffers’ terrible private moment played out in public because that is how they choose to live. But behind closed doors in neighborhoods nationwide, families of children with special needs struggle every day. Our country needs a system that does more to support families and that values the lives of all children.
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