InvisALERT Solutions – ObservSMART

Consumer Perspectives: Advocates, Supporters, Parents

Services for the UnderServed partnered with the National Alliance on Mental Illness – New York City (NAMI-NYC) for this special edition of this column. This article is part of a quarterly series giving voice to the perspectives of individuals with lived experiences as they share their opinions on a particular topic. The authors of this column gathered for a discussion group with their peers to inform this writing.

As parents of children with mental health needs, our knowledge of the children’s mental healthcare system has largely been built out of necessity. We are participants in a support group with the National Alliance on Mental Illness (NAMI) – New York City, and can each recall the moment we became introduced to this world – the times we realized that our children needed something more than we could provide as parents. It started with the diagnoses and the early signs: straight-A students refusing to attend school, a child saying things and doing repetitive behaviors that concerned us, or school staff saying our child might have depression. Since then, the experience of finding and maintaining effective care hasn’t been easy for any of us or our children. But our involvement, and the help of supportive resources like the National Alliance on Mental Illness, has taught us so much and has strengthened our resolve to continue to be champions for our children and to help empower other parents with what we have learned.

Our discussion brought up some very powerful take-aways. Below are a few of them. Each of the quotes in this piece represents sentiments expressed directly by one of us.

At one time or another, we have all had negative experiences with access and quality of care. Our discussion brought up some real challenges we have had in finding effective care to meet the specific needs of each of our children. Our experiences have exposed us to holes and flaws in the system and with insurance coverage – things that we feel have prevented our children from getting the care they need. While we have certainly experienced successes, we cannot ignore how challenging it has been.

“I knew my child had obsessive compulsive disorder (OCD), so I asked our insurance provider for a therapist. They sent me a list of 5,000 people and more than 50% of the numbers were wrong. A bunch of the other numbers were people who only saw adults. Very few people see kids with OCD. It took two months of me looking every day until I found someone who works with kids, who is an OCD specialist, and had availability. We found care and medication for her. Then she sort of got ‘fired’ by everyone because she had a downward spiral. She stopped going to school, stopped eating, stopped going to the bathroom. They said she had to be in residential treatment, but our insurance refused to cover it. Our insurance offered me a mentoring service, but when they called me for the first appointment, he had never even heard of OCD.”

“I think the biggest problem we have in New York is that guidance counselors in the public schools are not really trained to handle mental health. When my son stopped going to school, the guidance counselor had no interest, no wisdom, no insight, no empathy, no nothing. All she offered me was, ‘This is not the right school for your son. This is a very rigid school and he cannot keep up.’ But he got into the school, so I knew it was not an intellectual problem, it was an emotional problem. But they didn’t know how to identify it.”

“Psychiatrists are so hard to find. They are not in-network. There was one psychiatrist who called and said, ‘I’m sorry, I cannot take your son. He just has so many problems.’ And I found out that it’s harder to find an adolescent psychiatrist because they have to do two more years of residential training.”

We have to advocate fiercely for our children. From navigating what services are covered by insurance, to coordinating communication between providers, to educating staff on our child’s particular diagnosis, to calling out stigma among healthcare workers, we do a lot. None of us had any help when our children first needed care, so we were left navigating a complex system of providers, policies, and terminology by ourselves. Some of us have worked double shifts to be able to support our children’s healthcare needs. We have paid for out-of-network costs out of pocket. As parents, we will always do everything in our power to ensure that our children get help and services they need to not only be happy, but to thrive in school, graduate, and advance in life as healthfully as possible.

“Your research has to be so extensive and you have to be persistent and really know who to talk to. Otherwise you get lost and there is so much information, you don’t even know where to begin. My son’s issue is abandonment. And he had gotten close to his social worker. So when they tried to introduce another social worker, I said, ‘Is it possible for us to have a meeting where you introduce this social worker to my son so that the transition is better? This is what my son needs.’ So you really have to advocate for your kid.”

One quality connection can make a world of difference. In spite of the challenges, our discussion revealed that significant successes can come from even one quality provider or relationship. Our children need to trust those they work with and feel respected and validated. These qualities, along with care that is accessible, can be truly life-changing.

“Looking back, what we thought was normal teenage behavior was not. That was when my daughter starting having auditory hallucinations. We found a good therapist. She worked hand-in-hand with her doctor at the time and my daughter felt comfortable. My daughter was so excited because at one point she didn’t trust anyone. This therapist was in-tune to my daughter’s feelings, and didn’t negate what my daughter told her. She also told me to take my daughter back for a proper diagnosis. My daughter was so excited to see her, and there was a change in her behavior. She started wanting to be more sociable with family members.”

“My son’s guidance counselor, I love her. She is the one that noticed that he was suffering from depression and was talking about suicide. She was the eye-opener. He really liked her, he opened up to her all the time. She recommended a particular hospital, and he got a very good therapist there.”

“The mobile crisis team at my local hospital is fantastic. Number one: they come to you. I knew my son would never show up to therapy, but they come to the house three times a week. That is major. And I don’t have to be there. I’m working and I can’t take off every time they are there. Plus, it’s free.”

Having a support system sustains us. Everyone in our discussion group is connected to one another through NAMI’s parent support group. For us, NAMI and our group here at Services for the Underserved (S:US), have helped ease the stress and isolation we have felt from the struggle of navigating the system and other challenges. We feel comfortable with each other because, in this space, we won’t be judged and minimized. The typical stigmas and attitudes we experience out in the world, toward our children and our lives, do not exist.

“I had an ‘aha moment’ realizing people are going through the same thing as me, who I could speak to and not feel uncomfortable. It’s really hard speaking with family or coworkers. No one else understands. That’s the reason I’m still with NAMI and volunteering to help other parents. It’s hard as a parent, not knowing where to go, who to turn to, how to look for things. Even for my daughter it was like a godsend, because with her diagnosis she has auditory hallucinations and they have a support group for that.”

“I wish I had known NAMI when I was first starting out. I was already deep, deep in the problem. I am a volunteer to support other parents. I really wanted to help because I know how painful it is, and when I think about it I get teary-eyed. I hear things from parents that I used to say when I was going through it. You really can’t do it without support.”

Advocacy, support, and hope help to fortify us, our ability to ensure our children’s needs are met, and our resolve to educate and support fellow parents.

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