The Story of PATHbinder
They say that necessity is the mother of invention. This holds great truth in the concept and development of the PATHbinder® toolkit. My son, Shea, was diagnosed with an Autistic Spectrum Disorder (ASD) at age three. Since that day in March of 1999, I have spent every day learning, researching, networking, and advocating for him - with doctors, in the school system, and through the ever-changing network of non-profit organizations and government agencies which make up his support network.
When he graduated from high school in 2014, I discovered
a whole new set of worries...
Could he live on his own?
Would he be able to hold down a job?
How would he handle things like paying bills, doctor’s
appointments, reporting to various agencies, and
After 20 years of therapies, doctor’s appointments, IEP’s, summer camps, ISP’s, and case management, I’ve amassed quite a lot of paperwork. HOW could I translate nearly two decades of information into the pieces I know he will need, once he moves further into independence? Furthermore, how can I help ensure that my son knows how - and will be able - to access and utilize the supports available to him, when he’s no longer under my roof?
My answer is PATHbinder®: an organizational toolkit to help families prepare themselves and their young adult children with autism spectrum disorders (ASD) and developmental disabilities (DD) for life as an age 18+ adult, and complement Supported Decision-Making Agreements. By working with teens and young adults with ASD/DD who are required to participate in post-secondary educational transition-planning starting (in Missouri) at age 16, parents, teachers, and case managers can help these young people learn how to manage vital information and access supports - BEFORE they are thrust into the complications of independent life as an adult with disabilities.
Shea is now 23, and creating the life he wants. After his college experience program, he worked with a transition coach to gain life skills and plan for the future, and a job coach to gain employment skills. We are proud to share that he has now been employed for a year, and - in fall 2018 - he moved out of our family home and into his own apartment with ISLA support and a roommate! Don't get me wrong - I still worry - but my hope is that what we're building helps him and the many other young adults who face these challenges, to live a happy life - a life they choose.
We all want our children to be happy, independent, and successful. For parents of teens with autism and DD, the "letting go" process can be more of a challenge. How do you provide support, while encouraging independence? You need tools! PATHbinder® can help YOU transition from "Helicopter Parent" to "Drone Parent". That's right - you're still the safety net, but only visible when needed.
I'm sharing our story so you'll know that this is a cause about which I am deeply passionate. My family is just one of the 50,000 with autistic children in the U.S. who graduate from high school and “fall off the cliff” of support services each year. With 20+ years of experience in navigating support systems for my son, my family - and yours - are the reason we're creating PATHbinder®.
We hope that you will find the PATHbinder® ToolKIT beneficial to your family, as you prepare your young adult to launch from the nest. Please sign up to receive updates on development, and help us create tools to support young adults with ASD/DD during and beyond the challenges of life transitions. Let's Keep It Together!
Founder & CEO
JOIN OUR RESEARCH TEAM!
Our Research and Development Team is hard at work creating the PATHbinder™ ToolKIT for you and your family, including a secure, integrated web application for organization and storage, as well as a portable PATHbinder® for that good ol' HIPAA-friendly analog - paper.
The subscription-based web application helps to organize team contact information (teachers, doctors, case managers, etc.), as well as calendar and task management. The specially-designed companion binder helps to organize, store, and easily transport sensitive paperwork required for educational, medical care, and supportive service meetings. The PATHbinder® toolkit also includes web access to a variety of printable, fillable PDF forms to help prepare young adults plan for independent living, including:
home organization (i.e., landlord/maintenance, trash schedule, utility contact info, etc.)
"how to" sheets (i.e., unclogging the sink)
medical/therapeutic appointment and prescription records, and
preparation for annual reporting to social service supports (IEPs, Medicaid, Social Security, etc.)
Once years of data, paperwork, and experience have been translated into PATHbinder®, parents then teach their teens to use these resources for accessing supports and managing daily living activities. Teachers, Coaches, and Case Managers can all participate in helping youth with ASD/DD to organize, plan, and map their own paths to independent living.
Please take our survey to help inform product development and sign up for below for updates. Join us in the movement toward independence through supported decision-making for young adults with ASD/DD!
The mission of LIFEbinder LLC is to advance independence for people with disabilities (PWD) and their caregivers during life transitions and everyday living, through tools for supported decision-making that increase access to supports and self-determination of care.