I’m Chris. My twin sister, Crystal, has an intellectual disability. We are currently in our late 30’s. Crystal still lives at home with our single mother, who is in her mid 70’s.
Like many people who have a sibling with a disability, the idea of “future planning” was always in the corner of my mind, just out of sight. It was something I had mistakenly assumed mom would take care of.
In 2015 Crystal’s seizures became more frequent and mom began showing obvious signs of age and strain from having to take care of Crystal. These factors and a slew of others prompted me to return home from working abroad. I returned to Colorado with the intent to do everything in my power to improve my family’s lives and making sure there was a system in place to take care of them, so I could get my own life back on track.
It’s been 5 years as of the creation of this site and we still aren’t there. Like most siblings, I’ve run into so many personal, professional, logistical and bureaucratic obstacles that we’ve moved very little. If anything, my family can be a testament as to why future planning needs to happen sooner rather than later! However, we are making progress, slowly.
Here is our story at length and with reflection–>(Coming soon)
The amount of information out there on “Future Planning” for families with a member who is disabled is overwhelming and confusing. While recent attempts have been made to make this information easier to digest, a great deal of it is directed at professionals working in the field and leaves family members on the sidelines. I consider this site my digital notebook as I learn, collect and share information in a way that is, hopefully, easier to understand and empowering for the average sibling or family member.
I am NOT a professional. Unlike many siblings of individuals with disabilities, I do not work “in the field”. Professionally, I am a graphic designer and my knowledge of healthcare, law, policy making and systems change is limited. This site is an attempt to collect what I am learning as I work through this “process” in one place as a resource to any other siblings who are attempting to tackle this overwhelming experience as well.
If you have criticisms, please keep them polite and constructive.
If you like this site and my work, please share with others in our community.