A Kansas single mom of a severely autistic son discovers that the desperately needed supports denied to her are readily available to foster carers. Another tale from our broken system.
By Beneeta Dean-Felton
I am the proud mother to three beloved sons, the middle of whom has a severe form of autism. At 12 years old, Preston is nonverbal, is not potty trained, and already has the size and strength of a man, which is a problem because he can be aggressive. If he pushes you, you can’t stop him and if he runs away, you might not catch him.
A few years ago I moved from New Hampshire, where I had been teaching, to pursue a new teaching opportunity at the federal penitentiary in Leavenworth, Kansas. Of course I needed help at home, particularly before and after school when I needed to be at work and couldn’t physically be there for Preston. In Kansas, disability services are determined by the county. As it turned out, my area had the worst services in Kansas. Everything is contracted out, a decentralized system so complex it felt like a corn maze where you can’t find the end: calls that were not returned, year-long waiting lists, and already-full agencies. I have a three-page document that shows every single service I asked for and couldn’t obtain.
After pleading, the county office offered Medicaid and a before- and after- care assistant, contingent on my finding my own worker at $9.35 per hour, that would be paid through state Medicaid funds. I used every resource I could think of to find a worker: Facebook, Indeed, flyers and advertisement, you name it. I scheduled dozens of interviews. If I scheduled 30 interviews though, only about five people would show up. I did end up hiring two separate workers and in each case they worked one day and then quit. Working with a large aggressive child, really now a young man, was just too hard for $9.35 per hour.
I was then informed by our Medicaid insurer that if I didn’t try harder to find somebody they would take services away. They recommended an agency, but the first worker the agency sent quit after one day. Finally they sent a worker who stayed for three months. But the agency paid her late and their checks bounced, and she left as well. My employer reprimanded me for arriving late and leaving early from work, but I had no choice. I was then assigned to a job with strict hours and no access to my cell phone. The unbearable stress of my home and work situations took a huge toll on my mental and physical health. I asked the child welfare officer what else they could offer me. The answer was “There is nothing I can offer you.”
At one point I made the difficult but desperate decision to leave Preston at home in the care of his older brother who would put him on the school bus. Unfortunately, my eldest fell asleep and Preston eloped, ending up in the street naked (he hates clothes so much). I am obviously not proud of this episode and regret what happened, but in my experience almost every family with a severely autistic child experiences something very similar to this. The police took him to the hospital, and the Department of Child and Family Services asked if I wanted to put him in foster care. At that point that was my only option to get him services. Preston has now been in state custody in a foster home since November 2018. Even though this is not a case of abuse (instead, Preston is deemed a “child in need of care”), I am treated like a felon, allowed only weekly, one-hour supervised visits with him.
During a case plan meeting, the foster home provider said she needed an array of services to care for Preston, including aide support, respite, and home therapy. And guess what, she got them. Wait a minute, I said, what do you mean she instantly gets these services I’ve been fighting to get for years now? The response? I’m not entitled because I’m the biological parent.
This was complete lunacy. It seemed the state of Kansas would rather separate families, at incalculable emotional not to mention monetary expense, than offer needed support in the first place. It was a perverse penny-wise-pound-foolish situation. It also occurred to me that if I had moved just 20 miles away, to Missouri, I would not be in this predicament, we likely would have received appropriate services in the first place. Autism is like a game of lottery, you luck out or you don’t. And if you don’t your life can become a living hell.
Through this painful process my income was too high to get a court-appointed lawyer and I can’t afford a private lawyer. The judge in this case recognized the injustice of my situation and appointed me a lawyer. I am now working with him to figure out next steps. The best thing for Preston may be placement in a full-time residential school where he can have access to vocational services, social opportunities, a vocational farm, therapies and so much more than a foster home could. But he could also return home. If only I could get the help.
Beneeta Dean-Felton is the mother of three boys, one of whom has a severe form of autism. She lives in Leavenworth, Kansas.