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Mental Health Services, Campaigns Ignore Parents, Families

November 5, 2013 Guest Author

About 7.7 million adults and 20% of children and adolescents suffer from severe mental illness. Severe mental illness is chronic and requires sustained treatment. Mental health has become the most politically charged topic of today but despite attention, one population remains unrecognized.

The overwhelming neglect of parents, families, and caregivers is what led me to write my first book. I have always been aware of systemic barriers. But I wasn’t aware of the great divide between parents, families, and caregivers and mental health professionals, services, or even advocacy groups. (Parents of Mentally Ill Children Have a Long and Difficult Journey)

Left Out of Mental Healthcare Mix

It wasn’t until I began working as a therapist in public schools that I learned about the issues specific to this population. It’s apparent families require more collaboration with professionals, legal rights, and listening ears. I question what has gone wrong. How could a population so needy be so overlooked? I began evaluating this issue by speaking with families. What I found was a common theme relating to the mental health system, professionals, and recovery/advocacy campaigns.

Why are parents and family members of those with mental illness ignored by the mental healthcare systemSadly, parents, families, and caregivers are becoming increasingly devalued. For example, once a youth reaches age 14 in Pennsylvania, parents are no longer valued participants in mental healthcare. Youngsters have the right to refuse sharing details, refuse treatment (tx) itself, or sign themselves in and out of tx on their clock. In other states, 18-year-olds are granted full rights to ignore warning signs of impending doom. This is a very common dilemma but many well-meaning therapists and advocacy/recovery campaigns minimize these problems by highlighting recovery stories to offer hope and reduce mental health stigma. We fail to consider that we are highlighting the positives without educating the public to the long journey of mental health recovery and financial strain resulting from residential or long-term care. (Caring for Mentally Ill Children Should Not Put Parents in the Poorhouse) While we certainly aim to deemphasize negatives, our aim should be a balanced representation of facts. In order to reduce stigma or offer hope, we must know where the need is.

For a small number of people, mental health treatment never occurs due to lack of resources, poverty, or refusal to comply with treatment. Some are so sick and living in deplorable conditions that they end up homeless, untreated, victimized, jailed, or deceased.

How to Include Parents, Families in Mental Healthcare of Loved Ones

I believe there are steps we can take to jumpstart better care of parents, families, and caregivers:

  • Educate on how to prepare, respond to, and cope with crisis
  • Educate on how to navigate through confusing resources
  • Educate professionals on issues specific to this population
  • Change outmoded state laws
  • Provide access to a directory of free resources statewide
  • Provide discussions on health insurance/evidence-based treatment

In failing to recognize a hurting population, we bypass the homeless, self-destructive, untreated, victimized, and the psychosis that can lead to violent tendencies in a small number of cases. Let’s change this now!

About the author:

Támara Hill, MS, LPC-BE is a therapist working with children and adolescents suffering from disruptive behavioral disorders and mood disorders. While helping troubled kids utilize their strengths in the home, school, and community, she became well known for her interest in seeing change, connecting with families, and speaking on behalf of those in need. Through this passion she continues to rely on what she calls her “divine calling” for inspiration on where to help families next. Connect with her at AnchoredInKnowledge, Google+ or Twitter.

To be a guest author on the Your Mental Health Blog, go here.

APA Reference
Author, G. (2013, November 5). Mental Health Services, Campaigns Ignore Parents, Families, HealthyPlace. Retrieved on 2021, May 7 from https://www.healthyplace.com/blogs/yourmentalhealth/2013/11/mental-health-services-campaigns-ignore-parents-families



Author: Guest Author

Monica
November, 7 2013 at 6:30 pm

Thanks for your thoughtful response, Tamara. I think part of the reason public schools overlook this area (and sometimes on purpose, I believe) is because they can be held liable for costs when a student needs treatment that can fall under the legal requirement of a "Free and Appropriate Public Education" (FAPE).
Schools are mandated by law to identify and support kids who struggle like my daughter did, but some are so awful at that, and I think Jessica and her daughter can attest to that, sadly. My daughter's second public high school was a much better support. The first one basically seemed like the couldn't wait to get rid of her/us.
I agree that education needs to happen! I have spent months looking into starting a liaison type of service that does just that. Everyone I talk with (local mental health agencies to state board of education) thinks it's a great idea and a great need, but no one is willing to fund it. So I'll have to keep at it, just form a different 'plan of attack'.
And yes, laws must be addressed as well. I was determined to take action while my daughter was a minor. Even when I called 911 to take her to the ER, they were going to send her home becs she didn't have a specific plan for suicide (as the law states someone needs in order to be involuntarily committed), she just kept yelling at me that she wanted to kill herself. I fought them on that and they discharged her to a facility. But that wouldn't have happened in other states with differing laws/age of medical consent, or if she'd not been a minor.
I hope to continue to reach out, and I appreciate your encouragement. I will definitely be referring to your website myself as well as sending others there. I look forward to your book release in April.
Jessica, my heart goes out to you. I can feel the pain in your words. You deserve to be honored and acknowledged for your hard work and the tough things the system has put you through. I know how painful and disheartening it is. My best to you and your family. You are fighting an important battle, and I honor your courage.

Jessica alcaide
November, 7 2013 at 5:26 am

This is among the most objective and real articles i've read. i have severe mental illnesses. i've been tossed around the mental and general health systems like a piece of trash. my family is poverty and my insurance is rock bottom. the extreme damage its caused me, i have no words to describe. but what it's doing to my spouse and teenage daughter is horrifying. we scream for help from sources where it's they're job to help, yet not only are we ignored, but my kids school instead of being supportive is treating her in a discriminatory manner and causing harm to us all. we have no where left. gone thru every advocacy organizations of all sorts and they all either ignore us or just violate us. now my kid is falling hard. i have no way to stop the decent. getting rid of the trash I guess, but does it need to be so brutal. why not end us in a human way?

In reply to by Anonymous (not verified)

Támara H.
November, 7 2013 at 5:50 am

Hi Jessica, thank you for your kind comment. I can agree with you. Your story is not that far from other individuals and their families I have spoken to. You are probably among the millions of families that feel the same way you do. There is so much to mental health care and sadly, the field has been reduced so much that patients and their families feel the pressure. Insurance is poor, advocacy is imbalanced, resources are unavailable to lower income families and individuals, and social security disability funds are often not enough to live above the water. In many cases, people are denied social security disability funds and if they get funds, they are below the poverty line. Trying to work with SSI disability is also hard because they can be stopped completely.
Another complaint is: Government funded programs such as HUD or Section 8, which are erroneously stigmatized by insensitive people. SNAP benefits have been cut from individuals who have mental health concerns within their families and need the funds for food. People, especially kids, who need food to take their meds are finding complications. The issues are immense!
I don't like "promoting" my own book, but I encourage you to check into it on Amazon because here you will find resources on free services. I also give you an inside look (from my experience) on why things are the way they are.
If there is a specific need you have, feel free to email me at contact@anchoredinknowledge.com and I would be happy to try to assist you by offering free to low-cost resources in your community.
I wish you well,
Tamara

Monica
November, 7 2013 at 4:44 am

Thanks for this post. I was one of those parents thrown into the maze of mental health/illness treatment without a clue, or anyone to give me a clue. I agree that there is a HUGE gap here, and want to help fill that gap.
My specific questions for you: How do we best go about educating parents, families, and caregivers? What is the most expedient and far-reaching way to educate professionals? How do we let families know the resources that are available to them as they seek to support their mentally ill loved ones?
My specific passion is geared towards teens, and connecting parents of teens in crisis to available resources as well as walking alongside them in their crisis. No one seemed to be able to point me in the right direction. We stumbled our way through, but it doesn't need to be so hard. In fact, it's almost criminal that it is.
My blog (http://helptohopeblog.net/) and Facebook page (Help To Hope) are part of my effort to reach out to parents of struggling teens. I have ideas of what else I feel should be done, but also deeply desire to hear other thoughts and ideas. (Feel free to email me at HelpToHope@msn.com or contact me via a blog comment.)
I would love to hear your thoughts on the specifics of what you see as the most important, practical steps in achieving this goal of educating and supporting families. I look forward to following you on Twitter, as well as following your blog and referring to it when needed.
Thanks,
Monica

In reply to by Anonymous (not verified)

Támara H.
November, 7 2013 at 4:46 am

I did review your site and it is very interesting. I'm glad there are people reaching out to adolescents and their families or caregivers. I learned a while back just how overlooked this population is and I'm still struggling with why! Parents are always speaking out for help, resources, financial support, legal changes in laws, etc. If you visit a typical special education school or middle school with mental health services, you will find many many parents frustrated, left alone, and uncertain about their future and the future of their children.
But more specific to your question regarding what I think needs to be changed. This is a complex question, but I think there are things we can do at the state level and within our communities to help parents, families, and caregivers more:
1.) Educating this population will include a lot of outreach within our communities, through the Internet, through conferences they can afford or conferences offered for free, through public libraries and schools, through local support groups and NAMI associations, and even books and websites (such as your own website). One way I began reaching out to this population was through my site: Psychcentral, AnchoredInKnowledge, and guest-posting like I have for HealthyPlace. Twitter is also a really good place to reach out to searching parents. Believe it or not, Pinterest and Google+ are also great places to reach parents.
But the most important place I think we need to be to reach parents is right in the community, where many families feel alone. If we could offer more free services to families we would be doing great. Free psychiatric assessments 1-time per year, free educational seminars twice per year, free library events, etc. These things really do make a difference, especially for lower-income families.
2.) Another thing that needs to change are laws that prevent families from pursuing appropriate and timely treatment. For example, while we all appreciate the privacy that HIPAA (Health Insurance Portability and Accountability Act of 1996) gives us, it prevents a lot of families from knowing what is going on in treatment and even in emergencies with their loved one. For example, imagine living in the state of Pennsylvania and your 16-year-old daughter is hospitalized because she tried to overdose. She asks the hospital to contact you, her mother, and you arrive only to be told that the hospital cannot give you details without your daughters consent. Your daughter refuses to consent to the hospital giving you details and you drive home in complete confusion. Another situation might be that your daughter seeks medical attention for depression or anxiety and you ask the doctor what he found and he says "I cannot tell you that without your daughters consent." Your daughter refuses to consent. This can happen in cases where a teen confess to wanting to commit suicide or homicide. These are very real issues! We need to change laws that prevent parents and families from stepping in when emergencies or serious situations may require parental or familial involvement. My recent book is about these very issues and you can find what I think needs to change at the state/legal and community level in this book.
Thanks so much for your comment and keep reaching for families!
Tamara

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