In our last two blog posts (Week 1 and Week 2), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and planning for their long-term care. This week, we’re focusing on some key information you’ll want to start documenting when it comes to long-term care and medical transition.
Thinking about your own mortality is never easy, especially when it comes to planning long-term care for a loved one with Dravet syndrome. However, it’s an important step to ensure your child will be safe, supported, and well cared for if the time comes when someone else needs to take over their care.
It’s important to take the time to plan for key areas such as identifying who will handle daily care, housing arrangements, medication decisions, financial management, and legal responsibilities for your loved one. The information outlined below will help guide you through this process – and the C.A.R.E. Binder includes writable pages to make it easier to collect and organize everything in one place.
Long Term Care Planning
- C.A.R.E. Guide
- Developing a Lifelong Support Network
- Financial Information
- Legal Checklist
- Long-Term Residential Living
In addition, it’s important to begin thinking about what the medical transition of care will look like for your loved one. This is a coordinated process that involves moving a patient from pediatric care to adult healthcare settings, while ensuring continuity, safety, and quality of care throughout. It includes the transfer of medical information, responsibilities, and ongoing care between different providers, teams, and systems to make sure nothing is lost in the transition. The C.A.R.E. Binder is designed to help you gather and organize information across each of these important categories.
Medical Care Transition
- Caregiver Assessment on Medical Transition Readiness
- Epilepsy Living & History Form
- HCP to HCP Letter of Introduction (Template)
Be sure to check back next week for the final blog in our C.A.R.E. Binder series, where we’ll review the Sibling Companion Guide!
