Diseases of the brain cover a wide spectrum, affecting infants born with effects of depression, to the elderly touched by dementias. We at The Kim Foundation are grateful when consumers and family members allow us to share their personal story, as it does bring hope and encouragement to others.
We’d like to introduce a special mom, the mother of a young adult on the autism spectrum, who also experiences other mental health disorders. As a nurse, the mother attended Nurse’s Day at the Nebraska Legislature in Lincoln on February 3, 2011. Her story motivates readers to become involved in our legislative process, and to truly address the opportunity to change the mental health care system.
I am a nurse and the mother of a young adult on the autism spectrum who also has other mental health disorders. Life is challenging for Zach. He is a kind, witty, and intelligent individual but even the simplest of daily activities can be very stressful for him. I am fortunate that Zach does not resist taking his medication to keep himself balanced – it is second nature to him and part of what he does, just like eating and sleeping. The toughest piece for Zach, is the autism piece, which leaves him feeling isolated – navigating the social world is very difficult for him. Individuals on the autism spectrum may also face other challenges: processing difficulties, sensory problems, learning disabilities, varying degrees of obsessive compulsive disorder, and self-stimulatory (tics) behaviors that are not understood by the general public.
As Zach’s mother I have been keenly aware of the difficulties in navigating the health system for care. I am so thankful for my nursing background. Navigating the system is difficult for me – I can’t imagine how difficult it must be for others. While Zach is blessed to have health insurance, mental and medical health care are just part of the services he needs to move toward a more independent life. The problem, which many of us are so painfully aware of, is the availability of comprehensive mental health services. There are not enough psychiatrists, medicines specific to psychiatric treatment are expensive, and community services and housing are nearly non-existent.
I recently returned to school to get my master’s degree in nursing. I felt compelled to go to school and put my education to work in advocating for mental health and becoming involved in developing policy for this vulnerable population. I have sought out opportunities to become better versed in the legislative process at the state and federal levels. I am hopeful that the new health care law which addresses some of the gaps in mental health care will be a step toward real parity in obtaining deserved care.
February 3, 2011 was Nurses Day at the Legislature in Lincoln. Nearly 275 nurses from across the state gathered for the chance to share their concerns about healthcare with their representatives. There are close to 3 million nurses in the United States. Gallup polls for many years have noted that nursing is the most trusted profession. A trusted group with large numbers can be an important voice for the vulnerable who need advocates in the health care arena. It is so important for us to reach out to our representatives at the state and federal levels to voice our frustration with the present state of mental health care. I learned at the conference that sending our stories (not pre-written letters/emails sent enmasse) motivates our representatives to act. Remember, they want to please you…they need your votes! Individuals on the Health and Human Service (HHS) Committee have more interest in health related issues. They have the ability to take our concerns and write legislation. It is so easy, given our current technology, to communicate with our representatives.
To contact your State Senator go to http://www.nebraskalegislature.gov/ . On the left hand side of the site you will find links on how to find your senator and his/her contact information. You will also find a link to specific committees within the legislature. At the federal level you can find and contact your Senators Ben Nelson and Mike Johanns at http://www.senate.gov/. We have three representatives in the House and you can find and contact them at http://www.house.gov/ .
Change occurs best at the grassroots level. I encourage you and concerned friends and family to contact your representatives, tell your stories, and make your needs known. We cannot wait for help to arrive – we must create it!