Having Conversations
Some conversations are tough to have when you don’t know where to start. And especially when it comes to talking about the topic of Long-Term Care Plans for your loved one with a rare epilepsy. Below are insights shared by…
Adults with LGS
Guardianships and Conservatorships
The definition and rules governing Guardianship vs. Conservatorship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of guardianship or conservatorship your loved one will require. A guardianship…
Transition of Care for an Aging Caregiver
Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare epilepsy. Life as a caregiver (e.g., cooking, managing medicines, medical appointments, therapy, etc.) can lead to decreased…
Aging Out of School into Daily Life
Ages 19-22
Transition to adulthood is a complex, confusing, and often emotional process. It’s also the first important step to plan for as you consider the long-term adult C.A.R.E. Plan for your loved one. For each family, the process can look and…
Preparing for the Transition to Adulthood
Ages 17-18
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” If your loved one is older than age 13 and…
Getting Started in Adolescence
Ages 13-16
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” While this guide targets age 13 as a starting point…