Challenge of the Year



Challenge of the Year is an initiative through which the Epilepsy Foundation of Michigan selects a significant epilepsy-related problem to work on each year. Through a variety of efforts (including education, public policy advocacy, and public awareness campaigns), we will strive to make a noticeable impact on this problem in Michigan over the course of the year. Check this webpage often to learn more about the issue, what we've been doing to address it, and how you can get involved!


2018 Challenge of the Year: Life Transitions and Independence

Background

Life involves many transitions, each of which can involve different challenges. The presence of epilepsy and other disabilities can add to or magnify these challenges. The following are some illustrative examples of transitions experienced by people with epilepsy:

  • a three-year-old boy with frequent seizures and intellectual disability is about to start attending preschool, and the parents don't know how to get him the academic and medical services he needs 
  • a five-year-old girl whose seizures are mostly controlled is about to start kindergarten, but the school is unfamiliar with what to do in the event of a seizure
  • a teen with epilepsy is about to start applying for colleges, but the parents are worried about how she'll be able to handle the academic challenges, avoid seizure triggers, and get appropriate care if she has a seizure
  • a young adult with epilepsy is still receiving services through the school system and working with a vocational rehab counselor to find a career path that matches his strengths and can accommodate occasional seizures and mild memory problems
  • a 38-year old man with poorly controlled seizures lives at home with his parents, receives Social Security Disability benefits, and does some seasonal work with his uncle when he can; he wants to get his own place, but his parents are concerned that it wouldn't be safe and that he'd have a hard time paying his bills and managing his affairs
  • a 76-year old woman with epilepsy and dementia lives with her adult daughter, who's finding it hard to provide her with the support she needs but doesn't want to put her in a nursing home

Each of these scenarios can have a positive outcome that increases or maintains independence. With appropriate planning, the likelihood of success increases. Throughout the planning process, people with epilepsy, family members, and the professionals who support them (e.g. educators, health professionals, case managers, etc.) need to consider several important things, including the following:

  • Safety - What can be done to reduce seizure-related risks?
  • Epilepsy self-management - What knowledge and skills does the person with epilepsy have and what do they need to develop to effectively manage epilepsy?
  • Healthcare - How can the person with epilepsy find and pay for age-appropriate epilepsy care?
  • Financial planning - How will costs of living be paid for in the short-term and the long-term?
  • Education - What supports, if any, are needed to maximize learning opportunities and academic growth? 
  • Employment - What types of education, training, and accommodations are needed to find and maintain gainful employment? If employment is not feasible, how can the person with epilepsy be productive and contribute to the community?
  • Social support - What is the person with epilepsy's current social support network? What skills and opportunities are needed to strengthen and expand this support network?
  • Life skills - What knowledge and skills does the person with epilepsy have and what do they need to develop to effectively manage daily living (e.g. cooking, paying bills, planning and organization, etc.)? What services and supports may be needed to help manage day-to-day life?
  • Self-determination - What are the strengths, interests, goals, and dreams of the person with epilepsy? What can be done to maximize this individual’s role in decision-making?

While some resources exist to help people plan for transitions and maximize their independence, they are often inconsistent and scattered across multiple, complex health and human service systems. Additionally, these resources are rarely designed to meet the unique needs of people with epilepsy. Identifying and securing necessary supports continues to be a challenge for many. Epilepsy Foundation of Michigan will address these issues in 2018 through our Challenge of the Year efforts. 

If you have questions about life transitions and independence, please call us at 800-377-6226.

Learn More Through These 2018 Programs and Events 


How You Can Help

If you or a loved one with epilepsy are in the midst of a life transition (or planning for one in the future), please take a few minutes to complete our Life Transitions and Independence Survey. This will improve our understanding of the challenges associated with life transitions and provide ideas on how we can help people with epilepsy maximize their independence.



Also, if you have a particular interest in helping us with this challenge or you have ideas to share, please contact Russ Derry (800-377-6226 ext 1302). Check back soon for more ways in which you can get involved. 
Additional Resources

  • Children's Special Health Care Services: Transition to Adulthood - resources to help youth with special health care needs transition to adulthood, including information on healthcare, education, employment, and independent living
  • National Parent Center on Transition and Employment - extensive website with a wide range of resources on transition planning (medical and school), self-advocacy, employment, and independent living
  • Got Transition - information for teens, families, and health care providers medical transition
  • Child Neurology Foundation's Transition of Care Program - resources for teens, families, and neurologists on transitioning from pediatric to adult neurology, including checklists, self-assessments, videos, and more.
  • American Epilepsy Society Transition Resources - tools for clinicians to assist teens with epilepsy in transitioning to adult neurological care
  • Michigan Alliance for Families - webinars and transition planning tools for families and students from pre-school to adulthood
  • Learn & Share Conference Call: Transition Planning for Youth with Epilepsy - Tricia Luker and Calvin Luker, The Respect ABILITY Law Center
  • Learn & Share Conference Call: Maximizing Independence with Epilepsy - Amber Vondra, transition coordinator at Disability Advocates of Kent County, Susan Woolner, patient support coordinator at Mercy Health Hauenstein Neurosciences, and Sarah Green, ADA administrator at The Rapid
  • Learn & Share Conference Call: Residential Options for Adults with Epilepsy - Linda Brown, Community Housing Network
  • Disability Network - formerly known as the Centers for Independent Living, this network of 14 agencies across the state provides a wide range of services to support independence in people with disabilities
  • The ARC Michigan - statewide organization and a network of local chapters focused on promoting independence and self-determination for people with intellectual and developmental disabilities; click on "Find Your ARC" to locate your local chapter
  • Community Mental Health Services Programs - local agencies that provide case management, person-centered planning, and a wide range of services to help people with developmental disabilities and people with mental illness maximize independence and community participation; click on your county to find your local CMH Services Program (websites aren't listed, unfortunately, but you can copy the second part of the email to get to the website)
  • Michigan State Housing Development Authority (MSHDA) - state organization that helps with housing rental, home ownership, and homelessness prevention and services; also provides access to federal housing assistance programs
  • Michigan Pediatric Epilepsy Project - Epilepsy Foundation of Michigan has partnered with Children's Special Healthcare Services, the Michigan Department of Health and Human Services, Pediatric Epilepsy Centers, and others to improve access to care for children and youth with epilepsy who live in rural and medically-underserved areas. If you would like to schedule a training or workshop for a group of parents, a school, or any professional audience, please contact Cindy Handford at 800-377-6226 ext. 1234 or chandford@epilepsymichigan.org. Cindy can cover a variety of topics including, seizure recognition and first aid, epilepsy diagnosis and treatment, transition planning, epilepsy self management, and much more.
  • Epilepsy.com - The website of the national office of Epilepsy Foundation has a wealth of information on epilepsy diagnosis, treatment, and self-management, including the following resources that relate to life transitions and independence:
    • Transitions from Pediatric Care to an Adult Health Care System - webinar on medical transition planning
    • Independent Living - information and resources on the many factors affecting independence, including employment, financial planning, and health coverage (be sure to check the dropdown menu on the left) 
    • Managing Your Epilepsy - as people with epilepsy transition to a more independent lifestyle, they need to take on greater responsibility for managing their condition; this section provides in-depth information on the many aspects of epilepsy self-management
    • Staying Safe - safety is an important consideration when planning for independence; this section provides suggestions and resources to help people with epilepsy reduce common risks associated with epilepsy


Archive of Previous Challenge of the Year Webpages


2017: Accessing Appropriate Epilepsy Care