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! 



2021 Challenge of the Year: Supporting Caregivers

Background


Whether it’s your child, parent, sibling, partner, friend, patient, or client, caring for and supporting someone with epilepsy can be both rewarding and challenging. As with epilepsy itself, caregiving responsibilities fall on a spectrum. From providing occasional support to someone who’s fully independent to being the exclusive caregiver for someone who needs extensive and constant support, every caregiver contributes to the health and wellbeing of the person for whom they care. People with epilepsy benefit not only from the support they receive from their caregivers, but also from the support provided to their caregivers. All too often, caregivers receive insufficient support in providing care. They may face high levels of stress (physical, emotional, and financial) and may feel overwhelmed when trying to navigate multiple complex systems (e.g. healthcare, education, public benefits, housing, etc.). Society tends to undervalue the importance of caregivers, and this is reflected in the lack of resources available to assist them in their duties. Caregivers’ own health often suffers in the face of this lack of support.  

Caregivers often need, but often lack, the following resources:

  • Time
    • Respite care
    • Time to attend to their own health and other responsibilities
    • Flexible work schedule and time off
    • Activities for the person with epilepsy that align with the caregiver’s schedule

  • Money
    • Payment for the care they provide
    • Employment income
    • Public benefits (social security disability benefits, rent assistance, food stamps, etc.)
    • Health insurance and financial assistance with premiums, deductibles, and copays

  • Social Support
    • Instrumental support (i.e. tangible assistance such as providing transportation, helping with chores, providing respite care, etc.)
    • Emotional support (e.g. encouragement, empathy, distraction, humor, affection, etc.)
    • Informational support (e.g. advice, ideas, sharing of resources, etc.)

  • Information
    • Epilepsy-specific information
    • Disability- and health-related information
    • General caregiving information

  • Health & Human Services
    • Primary and specialty healthcare
    • Mental/Behavioral health services
    • Legal services
    • Qualified paid caregivers
    • Home health services
    • Child care
    • Adult day services
    • Long-term care (e.g. group homes, nursing homes, assisted living facilities, etc.)
    • Vocational services
    • School/Educational services
    • Recreational services

If you need help finding any of these resources in your local area, please don't hesitate to call us at 800-377-6226. 

Through our 2021 Challenge of the Year, Epilepsy Foundation of Michigan will raise awareness of the needs of those who care for people with epilepsy and provide effective strategies for managing the ongoing challenges of caregiving. In doing so, we hope to promote the health and wellbeing of caregivers, so they can both thrive and provide better care. If you have ideas on how to support caregivers or you'd like to be involved in our efforts, please contact Russ Derry at 800-377-6226 ext. 1302 or rderry@epilepsymichigan.org.


Learn more and connect with others through these 2021 programs and events

  • Epilepsy Innovation Conference taking place from April 5 - 9, this virtual conference will feature content focused on caregiving
  • Back to School Conference - taking place on August 7, this virtual conference will offer information and networking opportunities for parents and others who care for students with epilepsy
  • Wellness & Epilepsy Conference - taking place on November 13, this conference will include networking opportunities and content related to caregiving and wellness
  • Learn & Share Conference Calls – recorded calls have focused on a number of issues related to caregiving, such as aging with epilepsy, transition planning, public benefits, residential options, relationships, and much more; for 2021, we will feature a panel discussion entitled “Caregiving: Reflections and Resources.”
  • Call & Connect Network - phone and Zoom-based discussion groups for adults with epilepsy, parents of children with epilepsy, and young adults with epilepsy that feature conversation, problem solving, encouragement, and sharing of resources and strategies; we hope to start a new group for caregivers of older adults with epilepsy
  • Camp Programming – in partnership with North Star Reach, this year we’ll offer a wide range of virtual opportunities for connection, learning, enrichment, and fun for campers and their caregivers; we’ll also offer multiple 3-day, in-person family camps for up to twelve families at a time; all camp programming is offered at no cost to families
  • Individual Advocacy – when a service is denied or a right is threatened, we can help caregivers to resolve conflicts so their loved one obtains the services or accommodations they need
  • Support Groups - there are several support groups and online communities in Michigan
  • Epilepsy Foundation of Michigan Facebook Group - private Facebook group for people with epilepsy, family members, and friends in Michigan

Stay tuned - we hope to add more programs and services to help support caregivers (including a workshop for older adults with epilepsy and their caregivers and a possible regional Rare Epilepsies Conference). 



Additional Resources

  • Caregiver Action Network – provides education, peer support, and resources to family caregivers across the country, free of charge
  • National Alliance for Caregiving – includes information on public policy efforts, research, and resources for caregivers
  • Family Caregiver Alliance focused primarily on caregivers of adults with physical and cognitive disabilities such as dementia, stroke, and brain injury
  • The ARC Michigan – along with 30 local offices, the ARC Michigan provides extensive information, support, and advocacy for people with intellectual and developmental disabilities and their caregivers; areas of focus include alternatives to guardianship, residential options, public benefits, self-determination, and much more
  • Disability Rights Michigan – provides legal advice and resources related to education, employment, access to services, and more
  • Disability Network (Centers for Independent Living) – network of 15 consumer-driven, community-based, cross-disability organizations that promote independence and self determination for people with disabilities
  • Michigan Alliance for Families – provides information, education, and support for families of children with disabilities, including live and archived Webinars on topics related to special education.
  • Area Agencies on Aging – 16 local offices that coordinate and deliver extensive services for older adults, adults with disabilities, and caregivers, including adult day care, respite care, support groups, counseling, legal assistance, care management, chore and personal care services, nutrition services, and much more


Archive of Previous Challenge of the Year Webpages