Major Progress Reflected in 2018 Epilepsy Institute

The following is a guest article submitted to epilepsy.com by Ron Manderscheid PhD, executive director of the National Association of County Behavioral Health & Developmental Disability Directors and National Association for Rural Mental Health.

Common Ground

The epilepsy field is much like the mental health and substance use field. It is

• Subjected to pervasive stigma
• Hampered by fear
• Constrained by lack of available information for consumers to choose needed treatments
• Unconnected with mainstream health

Yet, at the same time, it is

• Aided by family members who desperately desire to help
• Supported by a national movement
• Undergirded by an emerging infrastructure
• Buoyed up by great passion and energy

Thus, our epilepsy colleagues really are our brothers and sisters in spirit and in fact!

Skill Building Institute

That is why I was so delighted to be invited to participate in the annual Epilepsy Foundation Skill Building Institute held in Columbus, Ohio, on March 19 and 20. This conference, supported by the Centers for Disease Control and Prevention (CDC), brings together leaders from the Foundation’s nationwide network of local organizations and community partners, to learn from each other and improve service to the epilepsy community. The skills being honed at this national meeting have great resonance with the skills we need to develop for our mental health and substance use field.

First, here are some essential facts. Epilepsy occurs in about 1.2% of the U.S. population, or more than 3.4 million persons. For about one-fourth to one-half of these persons, it co-occurs with depression. Causes can range from genetic factors, to traumatic brain injury, to psychogenic factors, to unknown factors. Treatments include medications, surgery, dietary therapy, devices, support, and watchful vigilance to avoid triggers whenever possible. Epilepsy, like behavioral conditions, sometimes can lead to early death.

To improve treatment, promote recovery, and begin the quest for prevention, the Epilepsy Foundation is undertaking several critical strategies, all of which were on display at the Institute. These efforts include the following.

Building Partnerships

Epilepsy touches education, health, behavioral health, social services, and Medicaid. State of Ohio representatives from each of these fields spoke to the Institute audience about programs, strategies, and possibilities. Perhaps the most promising feature of these presentations was the fact that the Epilepsy Foundation is making an explicit effort to build these partnerships and to model them for all state affiliates.

Incorporating Social Determinants

The Institute included a very effective and humorous, but also pointed focus on the role that social determinants play in one’s health status, care access, and care use. It is well known that these determinants vary by geography, minority status, sex, and age. Without doubt, efforts at prevention, treatment, and recovery from epilepsy must be configured to take explicit account of these critical differences.

Addressing Behavioral Health Conditions

As noted earlier, the comorbidity between epilepsy and depression is well known and pervasive. Less well-know, however, is the bidirectional relationship between depression and substance use, specifically, prescription opioids or illicit heroin derivatives. Opioid use doubles the probability that one will develop depression, and vice versa. Behavioral health partnerships are a high priority for the Epilepsy Foundation.

Using Information Technology

Remarkable progress is being made by the Epilepsy Foundation in the development of apps and other electronic communication tools to promote better care adherence and disease self-management. Several well-attended workshops discussed the advances being made in these new tools.

Moving Toward Self-Management

A major theme of the entire Institute reflected a broad-based effort by CDC and the Epilepsy Foundation to develop online training modules that promote self-management of epilepsy. These include:

• PACES in Epilepsy—Program of Active Consumer Engagement in Epilepsy Self-Management
• HOBSCOTCH—Home-Based Self-Management Cognitive Training Changes Lives
• TIME—Targeted Self-Management for Epilepsy and Mental Illness
• SMART—Self-Management for People with Epilepsy and a History of Negative Health Events
• MINDSET—Self-management epilepsy decision support for adult people with epilepsy and their providers
• UPLIFT—Using Practice and Learning to Increase Favorable Thoughts

I encourage each of you to review these modules. Self-management has become today’s watchword for epilepsy and behavioral health.

Leaders Bringing Epilepsy Out of the Shadows

For me, a personal highlight of the Institute was the honor of awarding Rosemarie Kobau MPH, MAPP, team lead from CDC for Epilepsy, our National Association of County Behavioral Health & Developmental Disability Directors (NACBHDD) 2018 award for exceptional national federal leadership. Rosemarie has labored tirelessly to bring epilepsy out of the shadows for more than a decade. The growing success of the Epilepsy Foundation and this very Institute are exceptionally strong evidence that her efforts have borne very bountiful fruit. Our very warm congratulations and best wishes to Rosemarie!

Our hats also are off to Steve Owens, vice president of programs and services at the Epilepsy Foundation, and to the entire Foundation staff for an exceptional experience at this year’s Institute. They have achieved remarkable progress during the past year.