Lakota turn to crowdfunding after spate of suicides

Desperate to stem the recent spate of youth suicides in their community, citizens of Pine Ridge reservation have turned to an unlikely ally, crowdfunding.

Frustrated with the often burdensome reporting and management demands of federal mental health funding, the Tiospaye Sakowin Woonspe na Woapiye O’Tipi, Seven Extended Families Education and Healing Center have created a grassroots, spiritually and culturally based Lakota healing camps for at-risk young people. The crowd- and private-funded model frees the volunteer organization from adhering to mainstream mental health intervention demands that such work fit into the typical western scientific framework of evidence based practices and measurable outcomes.

In the Lakota worldview, incorporating healing of the spirit is essential to healing the mind and body. “People are spiritual beings; we (Lakota) don’t question that,” says Cindy Giago, program manager for the Healing Center in Porcupine, South Dakota on the Pine Ridge reservation. “Federal funding agencies want proof that our interventions work in the form of science and logic. But how do you measure spirituality?”

“Empirically-based science leaves no room for the cultural context that is crucial to the success of a treatment approach within tribal communities,” adds Holly Echo-hawk of the Pawnee Nation. She is founder of Echo-Hawk and Associates, an organizational behavior and management consulting company specializing in children’s mental health.

Therein lies the longstanding disconnect between the Native world-view and that of the Western, science-based perspective, a disconnect that hampers the success of government-sponsored mental health interventions in Indian country.

Differences between the concepts of wellness and response to disease are hurdles, and even the definition of success is a subject of debate.

Researchers such as Joseph Gone, professor of psychology at the University of Michigan and member of the Gros Ventre tribe of Montana, note that Western biomedical mental health interventions focus on the absence of disease and imply mind-body separation in treating illness. Cultural interventions, on the other hand, measure wellness as a harmonious relationship within the whole person, including mind, body, emotion and spirit.

Native researchers are working to build bridges between these worldviews. Gone and Echo-hawk are both members of the First Nations Behavioral Health Association, which advocates for culturally based mental health interventions as well as research that effectively measures such work.

Echo-hawk coined the phrase “practice-based evidence” – a reversal of the scientifically accepted measure “evidence-based practice” – to describe the success of Native culturally based interventions on Native terms. In other words, the community rather than an outside evaluator determines how well an intervention worked.

Echo-hawk and other Native mental health professionals and researchers are part of a movement to create a new framework for evaluating and guiding Native designed interventions. They call it the cultural competence movement. This movement, according to Echo-hawk, is driven by experiences in the field versus the science-driven evaluation philosophy of academia.

Gone shared an example in his article for The American Journal of Drug and Alcohol Abuse in 2012.

While working on the Blackfeet reservation to help design an alternative addiction treatment program, he met with members of the Crazy Dog Society, a group of men committed to revitalizing traditional Blackfeet religion. He explained his goals and hopes that the Society would join his team in creating and implementing the intervention. He added that an important component of such work required evaluation, since researchers didn’t yet know if Native traditions would help in healing from addiction.

Gone wrote, “At this, the gathering erupted in laughter. Once the guffaws had subsided, the society leader explained that “everyone in this circle is living testimony to the power of these traditions to effect recovery from substance abuse.”

Gone suggests that for Western science and indigenous wisdom to truly work together, they must seriously attend to strengths and limitations of each.

Western science-based mental health agencies are trying to find away to do this. Such institutions, however, don’t change quickly. “Federal mental health agencies change slowly. This ‘sea change’ has been going on for over 10 years,” Echo-hawk says.

The Substance Abuse and Mental Health Services Administration (SAMSHA) tries to bridge the gap between science and spirit in its Native American programming and grants and its support of “promising practices” not yet supported by a traditional evidence base.

According to agency spokesperson Tamara Ward, “SAMHSA’s work with American Indian and Alaska Native communities is rooted in the belief that tribal nations know best how to solve their own problems through prevention, treatment, and recovery activities that are culturally based.”

SAMSHA’s Circle of Care program was an essential building block for the current work of the Seven Extended Families Education and Healing Center on Pine Ridge. Circle of Care, a program designed to help tribal communities build capacity and infrastructure for children’s mental health programming supported Wakanyeja Wape Tokeca (Children of Different Way), the organization that predated the current Center. One of the Center’s founders, Ethleen Iron Cloud Two Dogs, a longtime Lakota tribal youth mental health program specialist and traditional healer, helped write and carry out the original SAMSHA grant.

Over the three-year course of the program, participants including parents, community members and medicine people created a healthy mental health vision for their children. It included a uniquely Lakota mental health assessment tool Giago describes as comparable to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM), the gold standard of mental health measures for Western-based medicine.

“Our medicine people were guided by the grandfathers [spirits] who came into ceremonies as they worked on designing this tool,” according to Giago.

She notes that a non-Native psychologist working with the program was shocked to find that much of the medicine people’s diagnosis were comparable or even more useful than his Western-based findings.

The Healing Center continues to use the Lakota assessment tool for triage and determining treatment for attendees at the healing camps. Giago says the camps offer participants a chance to return to traditional Oglala Lakota culture and values within the context of modern day life. This is reflected in:

— Understanding the importance of the Tiospaye (extended family)

— Recognizing that Spirituality encompasses all areas of life

— Utilizing traditional healers for physical and mental health care

— Practicing the Lakota Four Sacred Virtues of wisdom, bravery, generosity and fortitude.

— Teaching Lakota language, cultural protocol and terminology

— Acknowledging and coping with historical grief and inter-generational posttraumatic stress disorder

— Educating adults and children about Lakota history, traditions and spirituality.

— Regaining the balance with the earth

Mainstream research organizations such as the American Psychiatric Association; Division of Diversity and Health Equity agree that the best ways to strengthen and protect Native American mental health includes a strong identification with culture, family, connection with the past and traditional health practices such as ceremony. Strong spiritual orientation is an especially key factor in preventing suicide attempts. A study from Archives of Pediatrics and Adolescent Medicine found that American Indians on reservations who had a strong tribal spiritual orientation were half as likely to report a suicide attempt in their lifetimes.

Organizers are currently working to create a system to measure outcomes but Giago is confident about the camp’s healing effects on participants. “We know these camps help our young people; we see them grow into junior mentors. They stay with us; we make them our relatives, part of our tiospaye. They return multiple times to help us with the camps.”

She says the assessment team, healers and health care coordinators also create an aftercare program for the youth. “We follow up with them, calling and visiting. We take them to sacred site visits and horseback rides. Our volunteers will even transport families to ensure children receive necessary services.

“We don’t have any money but we have each other. We are all part of the tiospaye. People will help sew traditional clothing and moccasins for the children, they will do whatever is needed, donating time and effort,” according to Giago.

“The camp organizers, medicine people, cooks, firemen and support staff all have regular full time jobs in addition to this work.”

The cost of a healing camp session is about copy 3,000. “We pull resources from all over, schools, food vouchers from the tribe as well as crowd-funding,” she says.

Giago agrees that it might be nice to have a grant that would eliminate the stress of finding funding for each activity but is concerned about restrictions to the organization’s programming and services. “In many ways a grant would tie our hands as far as what we do.”

For instance in addition to the stringent scientific demands of a federal grant, the financial reporting process would likely prohibit cultural expenditures such as providing stipends for elders.

Although The Healing Center organizers are not opposed to pursuing federal funding in the future, they are focusing on delivering services to a community in need and building their programs capacity, according to Giago.

This philosophy aligns well with the Healing Center’s fiscal agent Village Earth, a Grassroots Support Organization or GSO that seems to reflect the Do It Yourself (DIY) trend in improving the world. Village Earth seeks to help communities develop a holistic vision of the world they would like to live in. The GSO emphasizes a bottom-up flow of decision-making for their partners who determine their needs and evaluate their own success. Village Earth offers partners like the Healing Center access to online crowd funding such as Globalgiving.org, Indigogo.com, Crowdrise and others.

Other grassroots Native and Native Alaskan mental health programs such as the Qungasvik Project in the Yupik community of Hooper Bay, Alaska have created their own set of evidence-based practices and outcome measures. The Quangasvik (Toolbox for Living) is a youth sobriety and suicide prevention program that has had enormous success in a community that had some of the highest rates of youth suicide in the state. Community members requested assistance from the University of Alaska Fairbanks Center for Alaska Health Research. Stacy Rasmus, Phd from the University and one of the project investigators, wrote in an article describing the project in the American Journal of Community Psychology, “The emphasis in the Quangasvik intervention is on how the community comes together and asks, ‘What can we do to deal with our problems? and How can [health professionals, outside researchers] inform and support our process and decision-making?’” Rasmus.

Quangasvik was the result of 18 years of collaborative research between several Yupik communities and the University, and, according to Rasmus, “the intervention was customized and owned by the community.”

She told First Alaskans Magazine in 2014 that such extensive community-driven efforts are redefining how health workers think of community intervention. “Culture is the organizing principle guiding measures of outcomes,” she said.

Indeed, there are promising signs that the slow sea-change of medical and wellness worldview may be gaining momentum. During First Lady Michelle Obama’s remarks at the April White House convening of Creating Opportunity for Native Youth, she said, “Folks in Indian country didn’t just wake up one day with addiction problems. Poverty and violence didn’t just randomly happen to this community. These issues are the result of a long history of systematic discrimination and abuse. We can’t just invest a million here and a million there, or come up with some five-year or 10-year plan and think we’re going to make a real impact. This is truly about nation building, and it will require fresh thinking and a massive infusion of resources over generations.”