The Need for Advocacy for Adolescents with Mental Illness
The Need for Advocacy for Adolescents with Mental Illness
Despite the fact that mental illness is one of the top five causes of morbidity, mortality, and disability for adolescents, those suffering from mental illness continue to go without the treatment they so desperately need (Dolan, Fine, & The Committee On Pediatric Emergency Medicine, 2011). Adolescents have special needs that are specific to their age group that are not easily understood by the general public. In addition to that there is a lack of recognition of adolescent mental health needs that leads to under identification (Jenson et al., 2011). Because adolescents do not have a voice and are dependent on others for their care, it is vital that they have an advocate (Hohenhaus, 2005). A mental health advocate can be the bridge over the mental health care gap so many adolescents fall into.
Overview of Adolescent Mental Illness
In order to understand why having an advocate is necessary, it is important to understand the prevalence and complex needs of adolescents with mental illness. In adolescence neural pathways and behavioral patterns are created that will last throughout their lifetime (Adolescence is a transitional time when new attitudes, issues, and behaviors are explored (Martin, 2014). While this exploration is necessary, it also a stressful time for adolescents.
Martin (2014) cites abstract reasoning as the primary issue that complicates the mental health treatment of adolescents. Being able to think abstractly is a necessary step towards becoming an adult but adolescents do not yet have the maturity to either ask the right questions, or misuse the existence of grey areas to support negative thoughts and behaviors. While this time period is one of exploration and sorting out how they feel and believe about the world around them, for an adolescent with mental health issues, this can create serious problems (Martin, 2014).
Dolan, Fine, and The Committee on Pediatric Emergency Medicine (2011) report that twenty one percent of children in between the ages of 9-17 have a diagnosable mental illness or substance disorder and that ten percent of children in the United States currently suffer from mental illness. Sadly, Only a third of those adolescents who are identified to have mental illness receive treatment (Merikangas et al., 2011, abstract). Adolescents who suffered with attention deficit/hyperactivity disorder (ADHD) and those who have more severe forms of mental illness are more likely to receive treatment than those with milder forms of mental illness or those with “anxiety, eating, or substance abuse disorders” (Merikangas, et al., 2011, abstract).
Adolescent suicide is the forth-leading cause of death for 10-14 year olds with more than half of adolescents overall experiencing suicidal thoughts (Dolan, Fine, & The Committee on Pediatric Emergency Medicine, 2011). It must be noted that were early screening tools used and proper treatment available, suicide would not so frequently be the outcome. If only a third of adolescents are getting treatment, two thirds are left suffering alone.
There is clearly a gap between the needs of adolescents suffering from mental illness and the treatment options available. Living with mental illness is possible; adolescents just need assistance learning how to live and the tools necessary to navigate their illness. Advocacy is the key to bridging that gap so that adolescents can reach a place of health and wholeness.
What Does an Advocate Look Like?
An advocate can be a parent, concerned family member or other adult, educational or medical providers, or others within a community who see a need and want to find ways to meet that need (NAMI, 2015). While training could be vital in preparing an advocate for the task at hand, the most important feature of an advocate is the desire to help those who are suffering overcome the barriers to treatment. A passion for change is necessary when dealing with such a fragmented and broken system. Advocating for adolescents with mental illness is no easy task and will require creativity, tenacity, and concern. Advocacy is a world in which it is easy to get discouraged, but the payoffs are tremendous for both the advocate and those they help.
As of now, there are not any nationally recognized standards or ways a person can become an advocate (Torrey, 2011). Because there are not any nationally recognized standards as with other professions and roles, becoming an advocate varies greatly on the type of organization and setting a person chooses to advocate. There is currently an effort by the Alliance of Professional Health Advocates (APHA) and others to develop a nationally recognized program for advocacy certification (Torrey, 2013). This program is just in the beginning phase though it is a step in the right direction for establishing national credentials for advocates. Until such time as a national program is developed, those interested in advocacy have to research local resources to advocate and participate in whatever training that specific agency requires. For example, the National Alliance on Mental Illness [NAMI] offers training and resources on advocacy for those with mental illness. Advocates in the NAMI organization can be involved in multiple types of advocacy projects from individual advocacy to political action to help make changes on a national level (NAMI, 2015)
Barriers to Effective Treatment and Proposed Solutions
Stigma and Skepticism
There are many barriers to the effective treatment of adolescents with mental illness. Mental illness generally has negative connotations that lead to negative attitudes and beliefs about the person who is suffering. The greatest barrier appears to be the stigma associated with having mental illness as it prevents adolescents or their families from seeking treatment in the first place (Cowan, 2014).
Henderson, Evans-Lacko, and Thornicroft (2013) report that over seventy percent of those with mental illness do not pursue adequate treatment due to the fear of being discriminated against. Being afraid of stigma is a very real fear as three out of four people with mental illness experience stigma (Government Of Western Australia Mental Health Commission [GWAMHC] (2010).
Adolescents already struggling with their identity and issues such as depression and anxiety could easily be overwhelmed the discrimination associated with being labeled mentally ill. Unlike physical illnesses, those who suffer from mental illness are seen as less socially desirable and have difficulty in relationships, educational and job settings, and the community at large (Henderson et al., 2013). It is easily understood why an adolescent would choose to suffer in silence rather than add the weight of stigmatization as well.
Stigma not only affects the initial decision to pursue treatment, but also at institutional and community levels (Henderson, Evans-Lacko, & Thornicroft, 2013). Those with mental illness are generally socially outcast and therefore not involved in the decision making process for policies and procedures that inevitably affect them. This group of adolescents is either without a voice, or their voice is dismissed due to the belief that because they have mental illness they are incapable of being a productive member of society (GWAMHC, 2010). Stigma also leads to a lack of support for the family as they are viewed with suspicion and malice. Those who are stigmatized have “experiences and feelings of shame, blame, hopelessness, and distress” (GWAMHC, 2010).
Another barrier to treatment is skepticism as it leads people to reject those things they do not understand (Cowan, 2014). The behaviors exhibited by the mentally ill are oftentimes seen as attention seeking rather than the presentation of mental illness. This is further complicated by a general lack of understand about what mental illness looks like in adolescents as well as how the treatment for adolescents is different.
Martin (2014) reports that adolescents are oftentimes seen as unruly and rebellious and while this is at times true, symptoms of mental illness could be mistaken for rebellion causing the adolescent to be denied care. People do not see the suffering of having a mental illness as a real problem so they don’t take adolescent who seek help seriously (Cowan, 2014).
The Christian community is notorious for ignoring the importance of mental health issues and even persecuting those with mental illness. Menzie (2014) reports that rather than understanding that they live in a fallen world where illness exists, they attribute mental illness to a lack of faith, the result of sin, or spiritual attacks. This is sadly supported by many scriptures such as Philippians 4:6 that says, “Do not be anxious about anything” or Romans 12:12 which says, “Rejoice in hope, be patient in tribulation, be in constant prayer” (New International Version). The misguided translation is that is they will just trust God or just pray those with mental illness will be fine. What they fail to recognize is that Jesus himself experienced every human emotion. When people talk about Jesus they forget about the Jesus who overturned tables in anger, lonely Jesus who begged for His disciples to stay up with Him while He prayed, or even desperate Jesus who asked why God had forsaken Him. Having emotions or distressing thoughts, even overpowering emotions and thoughts are no more sin than having a cold.
Overcoming stigma and skepticism. Knowledge is power and in no other circumstance is that true. Hohenhaus (2005) reports that educating others about adolescent mental illness and how it affects the adolescent, their family, the community, and society at large is the most important thing an advocate can do. As adolescents, their caregivers, and others receive training in mental health related issues, a veil is lifted making it less likely for symptoms to be seen in a negative fashion and or ignored.
Within the Christian community advocates can educate members about the causes and symptoms of mental illness while pointing to scriptures that point to compassion, advocacy, and hope. Jesus came to heal the broken hearted, to comfort them, to shine a light into their darkness.
This student posits that advocates can hold classes or trainings in the community to help members understand what mental illness is, what it looks like, and how it can be treated. Churches, schools, and mental health centers would be excellent locations to hold such classes. The Internet is also a very effective tool at reaching the masses. An advocate could create informational websites with links to resources important in in mental illness. Websites could also include message boards so that adolescents or their families could communicate with people who have similar experiences though this student recommends such a website be heavily monitored to prevent exploitation or bullying.
Lack of Organization, Effective Screening, and Quality Measures
Once a parent or caregiver recognizes the need for treatment, they are likely to find an inadequate system that is difficult to navigate and seemingly impossible to find hope in. Mental health treatment has been absent from most organized efforts to improve and measure the quality of care (Pincus, Spaeth-Rublee, & Watkins, 2011). This lack of organization and accountability leads to system devoid of effectiveness.
Dolan, Fine, and The Committee On Pediatric Emergency Medicine (2011) cite an inadequate or non-existent screening process that is caused by a lack of education and training. There does not appear to be a set standard in how to screen for, identify, or treat those adolescents with mental illness. For the most part the adolescent or their caregiver are at the mercy of whatever provider they come across and that specific person’s level of understanding and knowledge as well as their wiliness to get involved. Throughout childhood children are screened for multiple types of physical illness, it seems to reason that the implementation of a broad based mental health screening tools would be a positive step. In fact, according to Berger-Jenkins, McCord, Gallaher, and Olfson (2012) the providers who implemented a mental health screening tool in the pediatric office saw that parents were more open to discussing mental health problems and that attention to mental health problems by clinicians was increased. Despite this increase in attention, referrals did not increase so the system was not overburdened (Berger-Jenkins et al., 2012)
The American Psychological Association [APA] (n.d.) cites a lack of coordination, inconsistency in policy and procedures, and a lack of funding as the cause for the lack of identification of adolescent mental health needs. The mental health systems fragmentation makes continuity of care borderline impossible resulting in many adolescents suffering needlessly.
Overcoming the lack of organization, effective screening, and quality measures. In 2010 the U.S Department of Health and Human Services (HHS) was tasked with the development of a National Quality Strategy (NQS) by the Patient Protection and Affordable Care Act (ACA). The ACA’s purpose was to assist people in finding affordable, safe, and effective healthcare (Substance Abuse And Mental Health Services Administration [SAMHSA], 2014). While the ACA was a step in the right direction, and included stipulations for behavioral and mental health, its implementation in the mental health field has been sporadic at best (Pincus, Spaeth-Rublee, & Watkins, 2011).
Understanding the unique needs that mental heal encompasses, the SAMHSA (2014) used the NQS to create a framework for measuring the effectiveness of treatment and treatment outcome measures within the mental health field called the National Behavioral Health Quality Framework (NBHQF). The goal of the NBHQF is to provide “a mechanism to examine and prioritize quality prevention, treatment, and recovery elements at the payer/system/plan, provider/practitioner, and patient/population levels” (SAMHSA, 2014).
Advocates wishing to become involved in changing the mental health system so that the needs of adolescents are met could become involved with the implementation of the standards laid out in the NBHQF through working directly with agencies or their governing authorities. According to the SAMHSA (2014) there is not a cohesive method for measuring treatment outcomes. Advocates could help in the creation of outcome measures to determine the effectiveness of various forms of treatment or even to examine the provider performance. Now is a great opportunity to become involved in an up and coming field that is much needed and long awaited.
Lack of Training and Time
The mental health system is overwhelmed in general making it even less likely to be able to handle the specific needs of any one group, especially one that does not have a voice such as the adolescent (Hohenhaus, 2005). There are simply not enough people educated in adolescent mental illness to identify or treat those who are in need of help. Sadly many professionals and community members do not even recognize the need for specialized training. Most people consider adolescents to be “little adults” rather than recognizing they have unique needs (Hohenhaus, 2005).
Even when a provider recognizes the need, the limited amount of professionals to support them leaves them overburdened. There are simply too many adolescents with too many needs and everyone suffers. Providers are left without the time necessary to effectively intervene; this is true of teachers, counselors, medical providers, and other concerned community members (Hohenhaus, 2005).
Overcoming the lack of training and time. Dolan, Fine, and The Committee on Pediatric Emergency medicine (2011) advocate for the training of social workers, physicians, and community mental health workers in the intricacies of treating adolescents with mental illness. Training should start first with how to identify those who have unmet mental health needs, according to Jensen et al. (2011) this is best accomplished by developing a brief and easily understood method with scientifically designed warning signs. Providers should be trained in use of such a screening tool so they are better able to utilize their time. Currently mental health issues are generally dealt with on a crisis basis, which takes significantly more time and energy for all involved. Having an organized method for identifying problems before they turn into a crisis will lesson time providers are stuck dealing with a crisis.
Adolescents with mental illness and their families are currently suffering needlessly due to a fragmented and inadequate system. The treatment of mental illness involves a multi-systemic approach but at this time, there is no central piece coordinating treatment so that there is continuity of care. A mental health advocate can be the difference between wellness and another child being lost forever to suicide or other serious mental illness. The mental health advocate can collaborate with the adolescent, their caregivers, teachers, doctors, therapists, and others in the community to ensure that their needs are met in a way that facilitates healing and growth. The system is overburdened dealing with the crisis situations caused by adolescent mental illness. As advocates become more involved crisis can be circumvented and lesson that burden.
American Psychological Association. (n.d.). Improving quality and coordination of child and adolescent mental health services [Web log message]. Retrieved from http://www.apa.org/about/gr/issues/cyf/child-quality.aspx
Cowan, K. (2014). A journal through the labyrinth of mental illness. Phi Delta Kappan, 96(4), 14-18. Retrieved from http://rx9vh3hy4r.search.serialssolutions.com/?ctx_ver=Z39.88-2004&ctx_enc=info%3Aofi%2Fenc%3AUTF-8&rfr_id=info:sid/summon.serialssolutions.com&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=A+journey+through+the+labyrinth+of+mental+illness&rft.jtitle=Phi+Delta+Kappan&rft.au=Katherine+C+Cowan&rft.date=2014-12-01&rft.pub=Phi+Delta+Kappa&rft.issn=0031-7217&rft.eissn=1940-6487&rft.volume=96&rft.issue=4&rft.spage=14&rft.externalDocID=3530555631¶mdict=en-US
Dolan, M. A., Fine, J. A., & The Committee On Pediatric Emergency Medicine. (2011). Technical report: Pediatric and adolescent mental health emergencies in the emergency medical services system. American Academy of Pediatrics, 127(5), e1356-e1366. Retrieved from http://pediatrics.aappublications.org/content/127/5/e1356.full.pdf+html
Hohenhaus, S. (2005). Policy advocacy for children. Journal of Emergency Nursing, 31(2), 209-210. doi:http://dx.doi.org/10.1016/j.jen.2004.09.007
Jensen, P. S., Goldman, E., Offord, D., Costello, E. J., Friedman, R., Huff, B.,...Roberts, R. (2011). Overlooked and underserved: "action signs" for identifying children with unmet mental health needs. Pediatrics, 128(5), 970-979. doi:_10.1542/peds.2009-0367
Martin, M. (2014). Introduction to human services: Through the eyes of practice settings (3rd ed.). Upper Saddle River, NJ: Pearson.
Merikangas, K. R., He, J. P., Burstein, M., Swendsen, J., Avenevoli, S., Case, B., & Olfson, M. (2011). Service utilization for lifetime mental disorders in US adolescents: Results of the National Comorbidity Survey-Adolescent Supplement (NCS-A) [Abstract]. Journal of the American Academy of Child & Adolescent Psychiatry, 50(1), 32-45. doi:10.1016/j.jaac.2010.10.006
Pincus, H. A., Spaeth-Rublee, B., & Watkins, K. E. (2011). The case for measuring quality in mental health and substance abuse care. Health Affairs, 30(4), 730-736.
Pinto-Foltz, M. D., Logsdon, M. C., & Myers, J. A. (2011). Feasibility, acceptability, and initial efficacy of a knowledge-contract program to reduce mental illness stigma and improve mental health literacy in adolescents. Social Science & Medicine, 72(12), 1-2019. doi:10.1016/j.socscimed.2011.04.006
Richardson, M., Cobham, V., McDermott, B., & Murray, J. (2013). Youth mental illness and the family: Parents' loss and grief. Journal of Child and Family Studies, 22, 719-736. doi:10.1007/s10826-012-9625-x
Stewart, J. (2012). Bridges not walls: A book about interpersonal communication (11th ed.). New York, NY: McGraw Hill.
Torrey, T. (2011, January 3). The myth of patient advocacy certification [Web log message]. Retrieved from http://aphablog.com/2011/01/03/the-myth-of-patient-advocacy-certification/
Torrey, T. (2013, March 1). Is patient advocacy certification on the horizon? [Web log message]. Retrieved from http://aphablog.com/2013/03/01/is-patient-advocacy-certification-on-the-horizon/