Nagging doubt and uncertainty have replaced my fear. Yet, I know I am not alone as I share a cup of coffee with the unknown.
Four other women, all with adults who experience disabilities and have been living an inclusive life in their own homes, feel my trepidation about growing older. What will it mean for our now forty-year-old children with rather complex support needs and us?
We are eager to find out as we gather around the kitchen table at an Airbnb nestled amongst the snow-covered red mountains and the Colorado River and perfumed by the sulfuric smell of local hot springs; we cry, we strategize, we share stories of our journey from past to present.
The Big Question?
The central question we all share is this: “How do we maintain the good life for our kids if we are not there?”
We all do it differently.
We each share different models of support. Some of us provide daily care, and others assist with occasional hands-on support for our family members when needed, and all of us, to some degree, “navigate the system.” We have become experts in getting the best out of the system for our family members.
We each have different funding models based on adult children’s needs and wants and needs. Funding for our family members to receive their needed help with health maintenance, personal care, homemaking, supported community connections, and employment support all come through Colorado Medicaid waiver programs. A few of our family members utilize subsidized housing dollars, and others live in homes purchased through a trust or other funding sources.
What we all have in common is our family members live in their own homes, not in a host home or with a residential provider. Homeownership was an innovative best practice when our family members transitioned from high school to adulthood. Yet, none of us, including the leaders in the field at the time, thought about maintaining home stability without family involvement.
Unfortunately, other priorities, such as COVID and the staffing crisis, have kept this concern on the back burner. State and federal officials are beginning to understand the tsunami of aging caregivers who will age with their adult children. They see the devastation on the horizon.
Our five moms and extended family, including spouses and siblings, are still working on solutions. Here are a few:
- Grant funding for a back office to handle paperwork and liability insurance for the Progam Approved Service Agencies (PASAs).
- Explore using a joint venture model to include recruitment, hiring, and training best practices for our children’s support team members.
- Technology solutions to simplify all of the above.
- Sibling support.
Historically, we have always been inclusion pioneers. So why would it be different this time?