Libby's Law Letter

Dear "Representative",

I'm writing to you to ask for your help. For more than five years, I have been fighting to get proper medical treatment for my daughter who suffers from severe mental illness. Insurance providers have consistently refused her treatment as "not medically necessary", including Medicaid. In 2018-2019 she was admitted more than 13 times for treatment and every time, sent home too soon. In that five years of bouncing around, desperately seeking treatment, she suffered from hallucinations across all five senses. She was suicidal without end for five years. There is no worse feeling in the world that every day fearing your child might hurt themselves. There's nothing worse than the very real fear of losing a child. Thankfully, our story didn't end tragically.

In 2019, when Medicaid refused her treatment facility's appeal and my repeated appeals for further treatment, I refused to take her home. In my life, there is probably no harder decision I've ever made for my child. It tore me apart for months. The guilt, the pure terror over whether I was doing the right thing or not, kept me up at night. CPS stepped in and took over her care in March 2019.

Having spent time in the foster care system myself as a child, giving her up to the state for any reason, was the last thing I wanted to do. But without any other options, it was the only hope I had to gain proper treatment for her. And honestly, after five years of battling everything from insurance to disability to the school system, I was exhausted. Our family was broken, traumatized, and needed help.

CPS immediately relocated her to a facility in Houston called Sheltering Harbor. It was a challenging, heartbreaking transition, having her more than 3 hours away. Our family, by that point, had used all our financial resources to get her treatment. My husband had to leave his job to take care of her, then got sick. I lost my job when I had to take care of him for nearly nine months. Our family fell apart. We became homeless. The one saving grace was Libby was safe in Houston.

While we battled to rebuild a stronger foundation for our family and recover from all the financial strain of her treatment, she was receiving intensive daily treatment, medication management, counseling, and even important extracurricular like yoga to help her focus her mind and get in touch with her body. These were all things we wanted for her but couldn't give her. Month by month we started seeing improvements - slowly at first, then faster. She went from believing everyone was going to kill her to the loving, smiling, happy child I knew her to be. She began to finally improve in school after years of failing and struggling. She began to love learning, reading, and life.

Her eyes brightened, her smile returned, and the trauma of the last five years vanished from her face. The depression receded like a dark cloud replaced by the sun. Slowly, day by day, my daughter was finding herself again amidst terrible mental illness thanks to the help of talented, caring, medical professionals and proper medical treatment. Almost fifteen months later, I'm writing you this letter with her finally having returned home for a monitored return via CPS. The metamorphosis is nothing short of miraculous. The best part? Her daily hugs and kisses, something I missed the entire time she was gone. Our family is doing well after months of intensive therapy, for both me and our family. Our journey is still ongoing of course - severe mental illness has peaks and valleys but never truly ends. We're grateful for where we are right now - grateful to see her doing so well.

Part of what haunts me though, is I know our family is not the only one to go through this. We're survivors of a system that marginalizes and discredits victims of mental illness. My daughter has been mistreated in countless ways by insurance companies and medical professional. The lack of compassion and empathy is mind-boggling. The ignorance is astounding. But what's worse is the lack of resources and options. Why are insurance companies allowed to make life and death decisions for patients with mental illness? Why was treatment repeatedly refused against medical advice by insurance companies? The culprits here are Blue Cross Blue Shield and Medicaid, both of which repeatedly refused her treatment for not being medically necessary. How is it possible that a CHILD with a five year history of severe mental illness, suicidality, and hallucinations can have any treatment labeled "not medically necessary" by insurance companies? How can a patient who is actively hallucinating and saying she wants to die, be refused treatment and sent home, not once but time and time again? Why did I have to give up my child to the state in order to get her treatment?

I believe there's a better way and I'm writing to ask you for your help to change this through legislation. I would like to propose "Libby's Law". In its basic form, it would mandate that insurance companies would be barred from refusing medically necessary treatment for mental illness. This is desperately needed as all across the country there are stories of patients being released without proper treatment and against medical advice.

Proper treatment doesn't happen over a few days or weeks, it happens consistently, month after month, until the patient is stable and healthy. There's no magic wand or cure for mental illness but we can and must do better. Our homeless population is proof. Countless stories of struggling families and lost patients are proof. We need to make it illegal for insurance companies to refuse treatment for these severe issues because proper treatment is life changing. My daughter is living proof. I would like your help to make treatment for mental illness a reality for more people. I would like to make it impossible for another family to go through the hell we experienced for five years.

Thank you for your time and I hope to hear from you. Maybe together we can change the world a little bit for the better and create more success stories like Libby's.