By Caregivers, For Caregivers
About
The Medically Complex Caregiver was created by a parent of a medically complex child in order to fill a very significant void in supporting others going through similar circumstances. Limited resources existed for caretakers of individuals with medical complexities. Finding relevant information was incredibly difficult. Standard parenting blogs did not apply, and special needs resources focused on common, milder special needs circumstances.
No resources focused on the unique experiences of rare diseases, chronic illness, genetic mutations, seizures, developmental disabilities, and other complex medical experiences. If any did address this unique group, blogs would address the emotional experience and not guide others through navigating logistics, resources, and support that currently exist. Specialty sites focused on specific rare diseases or conditions. Government sites often had limited information or high level details that did not outline the full scope of their services. Everything existed in silos and even government employees had limited understanding of the full scope of options medically complex individuals were entitled to or may exist.
​
After speaking with other parents/caregivers going through similar experiences, the Medically Complex Caregiver creator learned helpful recommendations, tips, and guidance on options available that she never knew existed. Misconceptions regarding services available were dispelled and next steps became clearer.
​
Nothing in this situation is "normal", easy, or clear. Navigating the process is confusing. Support, programs, tools, and resources are hard to find and determine eligibility. Understanding what exists and the process for applying is equally confounding and enraging. Often, caretakers do not know where to start, whether it be with a recent diagnosis or a new challenge along this wild ride.
We are here to share our lessons learned with you, including providing clear guides, information, and recommendations. We want to support you and make life a little simpler and less overwhelming. You are not alone and do not have to learn everything from scratch!
Mission
-
Share lessons learned and guides to aid medically complex caregivers in identifying, obtaining, and advocating for support and resources
-
Create and centralize vital information: recommendations, guidance, potential providers, available services, support, and resources
-
Help make life a little simpler for caregivers, who already have more than enough to handle
Vision
Our vision is to become the resource that caregivers trust when navigating life with a medically complex loved one. Finding and obtaining services and recommendations will be simpler, clearer, and less overwhelming. Hopefully, one day, our services will not be necessary, and the process will be completely transparent. We envision a community where caregivers can come together, feel empowered, and find others who are experiencing similar things.
