A partner ministry of The General Commission on Religion and Race

June 2023   

Volume 13, #1


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Mental Health Advocacy

TheVOICE  
of the
United Methodist
 Disability Connection

MENTAL HEALTH EDITION

Greetings and welcome to The Voice, Mental Health Edition


The Mental Health Task Force has been in transition with the planned departure of Deaconess Sharon McCart, who helped start the group. We are grateful that Vickie Johnson is now leading the Task Force and that several new members are coming on board.


Advocacy for adequate mental health treatment is a role that all of us can take on, whether as a self-advocate, as an ally, or as a congregation or conference. The articles in this issue will give you some tips, tools, and resources for how to go about that process.


We would love to hear what your congregations are doing to support mental health within your community! The needs are great, and we can learn best by adapting models that are having success.


Deaconess Lynn Swedberg, VOICE editor

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On Your Journey

A winding road between green hills fades into the light of a sunset.

I have schizoaffective disorder, a severe mental illness. I am lucky to be extremely high functioning, but it’s been a long road getting here. I’ve learned a few things both for those with mental illness and for those that love us. If you have a mental health disability - or any other type of disability keep these things in mind: 


· Doctors don’t know everything. When it comes to our medical system, advocating can be a challenge. I’ve heard disturbing stories from friends about doctors not listening to their patients. The doctors ignore patient concerns telling them to give a medication “six more weeks” when the patient has already been on it for months and they know it's not working. Doctors prescribe beyond their experience with the illness, or knowledge of treatment options. Or they prescribe so many medications, no one knows what’s working and what’s not. 

 

· Trust your own judgment. Learn to know your body so well, you can guide the doctors to the best regimen for you. 

 

· Stand up for yourself. Don’t be afraid to disagree with your doctor’s opinions. If your doctor is not helpful, if your doctor will not listen to you, find someone who will. Even when it’s hard or feels hopeless, stand up to anyone in your life who wants to dictate how you live it. 


· Take care of yourself. Watch your diet, exercise, and get enough rest. 


· Set boundaries. You CAN say, “no”. Realize when you have a disability, you may not be able to do everything you might like to do so prioritize what you really want to do. 

If you love and want to support someone with a mental health disability, I have this to say: 


·Empower us. It may be easier for you to take the lead but please, let us have input in those areas that affect us. We do not need to be babied or have our opinions denied. 


· Trust us. Give us the benefit of the doubt. We are not “faking”. We are not “trying to get attention”. Nothing hurts more than those two statements. You deny our reality and make us feel like our disability is our fault. 


· Support us by listening to us. When we’re in pain it helps to turn to someone else, to get the pain out by venting. We don’t need you to “fix” us, but it helps so much when you listen to us. 

Contributed by Jasmine Ray-Symms

Supporting the Pastor on Disability Leave

Back view of a woman with light hair sitting alone in a sanctuary pew facing a cross and altar.

I write as a formerly disabled pastor, and hope that my suggestions will help the church better support disabled clergy. My annual conference had few support systems in place for those on Clergy Medical Leave (the UMC term for disability leave), so I had to negotiate the process on my own. Because I am single and my family lives far away, I had no one to take on any of the burden.


Once I went on disability leave I had to leave the church I’d been serving, which meant a move to another community. There, I felt profoundly isolated. I received no pastoral care from church or Conference. When I attended church, people gave me well-intentioned but unhelpful advice. They did not understand the difference between clinical depression and a temporary depressed mood. This advice was painful and left me feeling even more incompetent and unsupported. I longed for someone to pray with me.


The process of applying for disability, trying to meet the constant demands for more information, and submitting repeated appeals was burdensome and disheartening. It took eighteen months for the insurance company to approve my application. The long process was especially grueling because I was suffering from depression, which undermines a person’s ability to cope and to focus on such details.



With no income, I had to cash in my personal pension fund to pay rent and buy food. The financial stresses of going a year and a half with no income, and the uncertainty about future income, added to my depression.

I realize that no conference or local church can respond to all of the struggles I faced. However, the consequences were all foreseeable, which gives the church the ability, if not to prevent such problems, at least to mitigate them.


Here are my suggestions.

1)    Create a conference committee or position to assess the disability applicant’s need for assistance with the process, then help the applicant as needed.

2)    Create an equalization fund to cover the extra health care expenses for clergy who are appointed outside the Conference Health Insurer’s network, particularly for those with minimum-salary appointments. This fund would shift the extra costs to the body that chose the plan and help clergy afford the medical care they need to mitigate or prevent disability.


3)   Appoint a pastor to the pastors. This should be arranged by the Joint Committee on Clergy Medical Leave. Having someone as my pastor would have helped not only while I was on disability, but in the several years of enormous stress and resulting decline that preceded my disability status.


4)    Inform the local church of the presence of the disabled clergyperson in their community and encourage members to offer their assistance in ways the pastor requests. Without support, the isolation and feelings of abandonment can be soul-destroying.



5)    Offer training to churches. The presence of a disabled person - clergy or not - provides a valuable opportunity for parishioners and clergy to learn how best to respond. 


See the article Sick Pastors by Rev. Dr. Sarah Griffith Lund for additional ideas.

Contributed by Rev. Kathy Makus

What Does the UMC Say About Advocacy?

UMC cross and flame logo

“Persons with mental illness and their families have a right to be treated with respect on the basis of common humanity and accurate information. They also have a right and responsibility to obtain care appropriate to their condition. The United Methodist Church pledges to foster policies that promote compassion, advocate for access to care, and eradicate stigma within the Church and in communities.”

2016 Book of Discipline, Social Principles ¶162.X

United Methodist congregations around the world are called to join the Caring Communities program, congregations and communities in covenant relationship with persons with mental illness and their families. Caring Communities engage intentionally in:

  • Advocacy. Congregations not only advocate for specific individuals caught up in bureaucratic difficulties, but identify and speak out on issues affecting persons with mental illness and their families that are amenable to legislative remedy.


2016 Book of Resolutions, #3303

Advocacy for Mental Health Treatment Funding

There are many effective treatments for mental illness, yet stories abound of insurance companies and policies that do not adequately cover behavioral health. Some progress was made in 2008 when the Mental Health Parity law was passed, requiring mental health coverage at a comparable frequency and dollar amount to that allowed for other diagnoses. The law did not, however, require coverage of services for mental illness.  The law is not always followed and seldom enforced.


A May 2023 Washington Post article documented a disturbing recent trend. Insurance companies are using automated systems to make coverage determinations, halting treatment prematurely based on unfounded algorithms or not authorizing it in the first place. The process of fighting such denials is time-consuming and beyond the capabilities of many individuals and families who find themselves amid a mental health crisis.


What can individuals, congregations, and annual conferences do to improve access to mental health care funding? 


1) Educate yourself.

Start by examining your own insurance coverage.  If your church uses alternate insurance plans or if you are a business owner check out mental health coverage when selecting plans.  If you are in management or a union member your voice counts when insurance plans are negotiated – speak up! Review the article Does your insurance cover mental health services? from the American Psychological Association for questions to ask.

2) Learn more about mental health insurance parity. 


Check your state law at Parity Check to determine if mental health care is covered at the same level as care for other illnesses. For a detailed history of the issues around mental health parity, including many that remain after the federal law was passed, see the Issue Brief: Parity from Mental Health America. 


3) Learn how to appeal a denial, and share your skills with others.


NAMI (National Alliance on Mental Illness) offers a free 76-page guidebook: The health insurance appeals guide: A consumer guide for filing mental health and substance use disorder appeals that provides tools, tips, and background information. You may also find Do you know how to appeal a mental health insurance claim denial from the Depression and Bipolar Support Alliance to be helpful. 

4) Join forces to advocate for laws mandating mental health insurance coverage.


Your congregational or conference Peace and Justice Team can lobby for changes in mental health care access at the legislative level. NAMI offers support tools, fact sheets, and up to date information on needed changes on their Advocacy page. The United Methodist General Board of Church and Society has a comprehensive resource toolkit Creating Change Together which guides groups through the steps of

  • formulating your story
  • planning a prayer vigil
  • writing, calling, and visiting decision makers

which will help you advocate without having to start from scratch! 

Compiled by Deaconess Lynn Swedberg

Upcoming Events

Book cover for Troubled Minds by Amy Simpson with a rough image of a church with a women's picture embedded on the red square of the building. the square

Severe Mental Illness and the Church -

Two week online course through Be a Disciple

taught by Jasmine Ray - Symms; June 19-30th


This course explores ministry within the church to persons with severe mental illness. Learners will examine the prevalence of mental illness, the difference between the more common mental illnesses and severe mental illness, and the efficacy of treatment for mental illness. Learners will also explore their personal biases towards persons with mental illness and the church’s response.


The course delves into the reasons behind the stigmatization of individuals with mental illness and the struggles often experienced during ministry to this particular group. Finally, learners will have the opportunity to share their own best practices and explore additional options to minister to persons with severe mental illness.


Course text: Troubled Minds: Mental Illness and the Church’s Mission

Photo credits:

Power:  Photo by Miguel Bruna on Unsplash

Journey: Photo by Matt Howard on Unsplash

Sanctuary: Photo by DNK.PHOTO on Unsplash

Computer: Photo by Alejandro Escamilla on Unsplash

As always, we welcome your feedback and suggestions. Please send them to us at the committee e-mail address and include "Mental Health" in your subject line. Our blog also welcomes writers who want to share their insights and stories. Thanks for reading and sharing this newsletter!


Mental Health Task Force of the Disability Ministries Committee of The United Methodist Church

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