Getting My Son the Health Care He Needs Was Never Easy … But Now It’s Practically Impossible
MomsRising collects stories from our members all across the U.S. about how health policies are impacting families. Here is a powerful story about the need to make sure everyone has access to quality, affordable health care from a MomsRising volunteer in Georgia:
My 15-year-old son Joe is a wonderful, charming kid who can light up a room. He also struggles with behavioral and mental health challenges and adds academic challenges. As his mom, making sure he has everything he needs to thrive is my top priority.
Joe deserves quality, compassionate health care, just as everyone does. But ensuring he has the care, therapies and medications he needs has never been easy and the pandemic has made it nearly impossible. His access to care is critical for our whole family and my struggles to find this basic support for Joe has underscored for me just how urgent it is that we increase access to behavioral and mental health care in this country.
Before the pandemic hit, I was working hard at two jobs. It was exhausting and I was always on my feet, but I needed to make ends meet. Meanwhile Joe was struggling with school and with his behavior. Instead of providing the care he needed, the state of Georgia categorized Joe as a ‘delinquent.’
That broke my heart, because I know my son is not a ‘delinquent’ — he is a child who needs support. The racial element of this situation was not lost on me. Joe and I are African American, and I’ve seen firsthand the way so many schools, state agencies and police departments are quick to criminalize people of color instead of helping us access the health care and other supports we need.
I was determined not to let the state write off my son. I knew he needed more help, and I was constantly sending emails and sitting on the phone with therapists and state agencies trying to advocate for him. I finally made some progress and Joe was receiving therapy and some in-home health services.
Then, in February, I was waiting for an important phone call from the Division of Family & Children Services when I was told I could not use my earpiece for a personal call at work. I made the tough decision to leave that job in order to find something more family friendly. Then the pandemic hit and my options for work vanished.
To make matters worse, what little support Joe was receiving vanished, too. He had been working with three therapists, but those services stopped abruptly and no one even called to check in on us. The home health services stopped, too, and there was no virtual replacement. Joe usually receives support at school through his IEP, but online schooling was a disaster for him and his school case manager didn’t bother to tell me until the end of the semester that there was “no way for him to pass math.” Being told he couldn’t succeed only made his emotional regulation issues worse.
Meanwhile, I am struggling to keep up with rent, grocery bills and other necessities because I was not approved for unemployment. I worry Joe can feel my stress while I try to keep our heads above water and get him the health care he needs. When he doesn’t have access to care, it affects my own mental health, and spending so much time advocating for him makes it harder for me to look for work and manage other tasks.
I will always keep fighting for Joe and for our family. But I worry about the future, especially because the Georgia Department of Behavioral Health and Developmental Disabilities is in danger of being cut due to the pandemic.
It doesn’t have to be this way. I wish more funding went to behavioral health departments instead of bloated police departments that approach families like mine with hostility. I wish I didn’t have to spend hours on the phone trying to get my son the therapies and medications he needs. I want to live in a country where health care is accessible to all, no matter what you look like or how much money you have. I will continue to raise my voice until that is a reality.
Does your family have a health care story? Personal experiences are powerful and can make a HUGE difference in helping elected leaders and others understand how health care policies impact families. Have you or a family member:
- Had COVID-19 (coronavirus) and had to receive treatment?
- Had a ‘pre-existing condition’ like asthma, diabetes, or high blood pressure (or even a c-section)?
- Gotten health insurance coverage through your state’s Marketplace or Medicaid program?
- Had an illness or disability that requires expensive prescription drugs or frequent medical visits, treatments, or surgeries?
- Experienced discriminatory behavior from a medical professional?
- Received a surprise medical bill after receiving medical treatment?
You can share your family's health care story here: https://action.momsrising.org/survey/healthcarestories_2020/?source=blog