When the System is the Barrier: Obstacles to Care

When my daughter went into fourth grade in 2019, our family needed a reset. In third grade, my daughter had had a tough time with classroom bullying and a difficult teacher. But the next year, she was getting back on track right before the holiday break. She was meeting regularly with the school counselor and looking forward to moving up to a new school building for fifth grade. We had high hopes for 2020.

Then in March, everything shut down because of COVID. We live in a multigenerational household and my mother was at home with us, but I’m in health care and an essential worker, and my husband and I continued to go into the office. My other daughter, 10 years older and in college, was home but had her own challenges with the pandemic and couldn’t really help her sister.

My younger daughter felt really alone. During the pandemic, she became a shell of her former self, creating rules for herself about what she wanted to do and what she didn’t. She has a Gifted Individualized Education Plan—kids with them tend to be more socially awkward—and the whole pandemic experience further isolated her and exacerbated her social anxiety. We also had lots going on at home. Relationships, finances, communication—things that were barely being held together pre-COVID—totally fell apart with the stress of being essential workers. We weren’t equipped to manage any of it, especially how it affected my daughter’s rising anxiety and her negative perception of herself. We needed to help her.

When classes resumed in person in late 2020, she didn’t know any of the kids in her class. Like a lot of parents, we realized she would have anxiety about re-entry to school. We tried to connect with the school counselors, but they were so busy with so many kids who needed them. It was very difficult to meet with them.

The counselors provided recommendations for therapists outside the school. But there were waiting lists for all of them. It took six months or longer just to schedule an evaluation—not even treatment. I went to a specialty clinic in Center City Philadelphia that assesses and treats children and adolescents with anxiety disorders but had to go through another intake evaluation. That whole process took a year.

In addition to our trouble finding treatment, my daughter didn’t want to go to therapy. Because I work in health care, I know the benefits of therapy. But convincing an 11-year-old is tough. The early part of her therapy was unproductive because she wasn’t into it. At that time, her social anxiety was affecting her daily life. We’d go places, and she wouldn’t get out of the car. She wouldn’t give her order at a coffee shop; instead, she’d whisper it to me. She and her friends would stand around in a circle texting each other but not talking.

The therapy did help her deal with anxiety, but when we asked about evaluating for ADHD (attention-deficit/hyperactivity disorder) or depression, they couldn’t because those conditions weren’t their expertise—so we had to look for another provider again. It’s hard to find someone who has a good reputation to do the evaluations and challenging, if not impossible, to get holistic treatment.

Not only was I looking for a practice that specialized in children and adolescents, but as a Black family, we needed one with people of color. It took eight long months to find the right fit, and in the end, I chose to pay out-of-pocket for her therapy. For families that are beholden to a particular network and can only choose from certain providers, mental health care may not work if they can’t find a therapist that is a good fit.

I’m a health care executive, and I found the whole experience to be infuriating. How is it that I have good health insurance, with providers in my network, and I’m on a waiting list for six months to a year? Meanwhile, I watched my child struggle.

Now, we’re trying to find another program. Her school counselor made a referral, but we can’t connect with them. It’s been over a month, and we still can’t connect. We’ll play phone tag for a few days, then a week goes by without contact. They also can only do an intake session from 9 to 5. My daughter doesn’t get home from school until 4. Tell me how that works for teens!

The system itself is a huge barrier to mental health care, the reason why so many don’t seek it out. We make it so difficult.

Amanda Williams is a mother of two and an experienced health care leader who resides in the Greater Philadelphia area, where she is an advocate for health equity and addressing health disparities in the communities she serves.