For me raising a medically involved child with nonverbal autism is HARD. It is expensive, isolating, exhausting and stressful. I love my daughter and wouldn’t change her for the world but I would change how hard it is to be a special needs parent – the constant fighting for services and acceptance is exhausting.

Many of the challenges of special needs parenting are unknown until they are encountered. Even so, in my worst nightmares, I never imagined that being a special needs parent would allow the government to place an electronic, GPS-enabled tracking device complete with audio and video recording capabilities in my home without my consent (EVV). This recording device which I am responsible for keeping charged at all times is controlled by an administrator (a government bureaucrat) who has the ability to remotely turn on or off applications including those necessary to create audio or video recordings from inside my home.  But this is what is happening to my family.

Two years ago, Caroline – my seven-year-old daughter with nonverbal autism, received a Medicaid SELF Waiver from the County Board of Developmental Disabilities. The Waiver provides funds for activities like adapted dance, therapeutic horseback riding, and swim lessons as well as for aides.  Caroline’s aides are part of our family – put another way – our family does not work without Caroline’s aides.  Caroline has boundless amounts of energy, requires next to no sleep, seeks out sensory experiences, has no fear and has a decreased sensitivity to pain.  Supervising Caroline is an on your feet in a ninja-warrior stance type of activity. Being able to pass the baton to Caroline’s aides at various points of the week allows my husband and I the break we need so we can function.   Not thrive mind you, function.

A few weeks ago, I received a seemingly innocuous letter from the State of Ohio Department of Medicaid. After reading the letter my first thought was “oh great, just another thing to worry about.” I wasn’t worried about the government having the ability to record every conversation and movement of my daughter (and family) because the letter clearly stated:

“You will have a small device in your home that your caregiver will use to check in and out with. The device looks similar to a smart phone, but it does not have smart phone capabilities. In fact, the device’s only function is to verify that you received your services.”

The letter fails to mention that the device has a camera on both sides and a microphone.  The letter merely alludes to GPS capabilities but does not actually speak to that functionality.  The intended purpose of the device is to reduce fraud related to charging Medicaid for services never rendered.

Families depend on the services paid for by Medicaid to function. We absolutely, positively cannot survive without the services that are paid for by Medicaid and the SELF Waiver.  The government knows this so they are basically telling families like ours if you want services you will allow us to invade your privacy and place this recording device in your home. It is wrong.