Hello, my name is Sara Gray I am a member of NAMI, and two years ago I became the Executive Director of NAMI KDK. I became part of the NAMI family seven years ago when my daughter had a mental health crisis. NAMI is America’s largest grassroots mental health organization. The organization was founded by families sitting around a kitchen table in 1978, brainstorming on how to improve their loved ones' lives that were impacted by mental health conditions. Our local affiliate NAMI KDK (Kane-South, DeKalb, and Kendall) was incorporated as a not-for-profit organization in 1993. As a mother of an adult child diagnosed with bipolar, I’d like to share my story and make the case why we need to support the improvement of mental health services.
They say hindsight is 20/20. When I look back to when my beautiful daughter was growing up there were red flags. I began motherhood at 20 years old. I was in college and I also worked full time. The first red flag was when my daughter entered preschool at three. She could not nap, and was considered to have more energy than a typical 3 year old. I requested a preschool screening from our local school district. She was diagnosed with ADHD and given an Individual Education Plan (IEP). School has always been hard because my daughter was often unorganized, impulsive, and restless. The second red flag was that the several times she took medication throughout her childhood were disastrous. Looking back, these medications triggered episodes of mania and psychosis. As a result, my child did not take medication and she has faced many challenges. It was not until my child was on the cusp of adulthood and experienced a mental health crisis that I realized we were looking at her symptoms through the wrong lens.
I was at work and I received a call that my child had expressed suicide ideation, was thinking about or planning suicide, and was leaving her college campus by ambulance. The guidance counselor was given permission to call me and I met her at the hospital. When I arrived, I was numb and in shock. My child underwent a psychiatric evaluation and the doctor on staff stated there is an underlying issue and strongly suggested that she transfer to a psychiatric hospital. It was during that hospital stay that she was diagnosed with bipolar.
Since my husband is employed by the University of Chicago, we are covered on their health plan. My daughter's health team met with our family to discuss her treatment plan. I sat there in trepidation. The fear I was feeling was apparent to everyone around me. My father was one of eleven children, and two of his sisters had a mental health diagnosis. Aunt Ruth had been diagnosed with Schizophrenia and Aunt Sally was diagnosed with bipolar. My father’s twin also had a few children that had various diagnoses. I can’t even remember what was said to me that day. I know I said two things. I will do whatever I need to do and then I cried and said please tell me what I need to do. I was 41 years old sitting with my 21-year-old daughter. I knew from my family medical history that there was a genetic predisposition and all I could think was this is all my fault. I am sure I was wearing all of these emotions on my face because one of the doctors leaned over and took my hands. He said, “I am going to give you some literature on NAMI. I think that it may be very beneficial to you.” I was handed some reading materials and resources.
That was the best piece of advice I have received on this journey.
That was the best piece of advice I have received on this journey. My husband and I began attending a NAMI Family Support Group. It was a game-changer for us. There we met individuals like us; those who loved someone with symptoms of a mental health condition and were trying to build skills to navigate this experience. One of the participants mentioned during the group that the NAMI Family-to-Family course was very helpful to them. My husband and I took the course and it was pivotal. The course educated us on mental health conditions and how it affects the brain, skills on how to navigate a mental health crisis, and how a diagnosis impacts the entire family. The most important piece of information we walked away with is we were not alone.
The most important piece of information we walked away with is we were not alone.
After five years on this mental health journey, we have experienced so many challenges. Cycling in and out of hospitalizations, we have spent countless hours in an ER. This is frustrating because she has a diagnosis and needs treatment. Right about the time that we had fallen into a groove with our care team my daughter was approaching the dreaded age of 26. She aged off our insurance, and we entered into the second hardest part of this journey so far. It was full of obstacles and setbacks. I was faced with my privilege of quality health benefits and I was furious when I began navigating the state care plan with my daughter. It felt as if we were backsliding to the very beginning - as if all the progress we had made in six years was for nothing. During the pandemic, and we were on the waitlist for talk therapy for over a year. My husband and I paid out of pocket for therapy, medications, and a psychiatrist. Eventually she was able to be seen by a nurse practitioner at the VNA and her medications became covered but she is still on the waitlist for therapy. It was a reality check for me. It highlighted aspects of our country’s system that need a complete overhaul. There are barriers to quality care.
It was a reality check for me. It highlighted aspects of our country’s system that need a complete overhaul. There are barriers to quality care.
There are barriers to mental health care. This impacts all of us. In the U.S., mental health issues are far more common than many realize. According to the U.S. Department of Health and Human Services, one in five American adults have experienced a mental health issue, and one in 20 Americans live with a serious mental illness, such as schizophrenia, bipolar disorder, or major depression.
For the majority of these untreated or under-treated individuals, the main barriers to mental health treatment and access are:
Financial barriers to mental health treatment
Lack of mental health care professionals and services
Limited availability of mental health education and awareness
Social stigma of mental health treatment and conditions
Intersectionality of race, ethnicity, sexual orientation, and class and the impact on individuals ability to receive equitable care.
While these barriers to mental health treatment are alarming, it’s essential to take the time to understand how these issues apply to communities and individuals. Understanding what prevents mental healthcare access opens the conversation to improving access with better programs and policies. NAMI has a strong history of advocating and creating positive change for individuals impacted by mental illness. We are a collective voice. Our shared lived experiences are our power. Together we raise the alarm of what is unjust. Today, we are an alliance of more than 600 local Affiliates and 49 State Organizations who work in your community to raise awareness and provide support and education that was not previously available to those in need.
Understanding what prevents mental healthcare access opens the conversation to improving access with better programs and policies.
What can you do to remove barriers and strategies for solutions? For one, join NAMI and become familiar with your local affiliate NAMI KDK (Kane-South, DeKalb, and Kendall) because it provides FREE support groups, education, and presentations with the desire to eradicate stigma. Use your values to prioritize the needs you’ve already observed in your community. It is justified to feel overwhelmed by the need but I urge you to support NAMI KDK and make a difference for mental health recovery. Collectively we can create change. NAMI KDK is able to provide free services without eligibility requirements because of grants and donations. We have three employees, multiple interns, a board of directors, and faithful hardworking volunteers. I became the Executive Director after I retired from Early Education. After becoming a part of the NAMI family following my daughter’s diagnosis, I made a decision to dedicate my resources, talents, and time to the mission. Please consider donating today. Every level of giving matters and makes a difference.
Do you want to help but are unable to give financially? Consider using your skills for a good cause. We are always in need of expertise. Some skills that are always needed:
Peers with a mental health diagnosis in recovery interested in facilitating groups or presenting
Caretakers of someone with a mental health diagnosis interested in facilitating groups and or Family-to-Family class
Outreach
Marketing
Social Media
Funds Development & Grant Writing
Technology & Data
Interested? Check out our volunteer and internship forms or email info@namikdk.org.
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If you are in crisis, call 988 or text HOME to 741741 for 24/7 mental wellness and/or crisis support. If you are facing challenges related to substance use or mental health, you may call the Illinois Warm Line at 866-359-7953. Visiting this NAMI page as well as contacting the NAMI Helpline at 1-800-950-6265 or helpline@nami.org will connect you to information related to numerous needs and concerns.