My family has lived, worked, and paid taxes in the Commonwealth of Virginia for decades. During that time, we have asked very little of the state. For most of my adult life, my wife and I, with help from our family, cared for our disabled twin children ourselves, relying on what insurance would cover, limited nursing support when available, and our own resources to meet needs that were not otherwise addressed.
After my wife passed away, the responsibility of providing full-time care for my wheelchair-bound children became even heavier. Their needs required care twenty-four hours a day, seven days a week. Reliable outside care was extremely difficult to secure because we could not find suitable caregivers who were willing or able to use the specialized equipment required to care for them safely, and liability concerns made the situation even more difficult.
Our family never sought extraordinary services from the state. We paid for home modifications, including ramps, accessible bathrooms, and vehicle adaptations for wheelchairs. We often struggled financially, including making house payments, while still trying to remain within income restrictions so my children would not lose Medicaid eligibility. If I earned too much, our family was penalized. Despite these challenges, we continued to shoulder the responsibility ourselves.
My wife has since passed away, as has my disabled daughter. My son is now an adult, and as I age, I remain deeply concerned about his care, his future, and the support available to him. Our family continues to seek guidance and assistance from the state on his behalf.
Over the years, my son’s needs have become more extensive. My wife and I built a home specifically designed to meet those needs because there was no realistic alternative, including a nursing facility, that could provide the level of continuous care he requires. For families in this position, proposed reductions or caps on care hours are deeply concerning.
I am especially concerned about proposals that would remove the Service Facilitators families have chosen and relied upon. These facilitators help families navigate the DMAS system, understand requirements, and advocate for the individuals receiving care. Replacing them with a broker selected by the state and employed through the fiscal agent raises serious concerns about independence, accountability, and potential conflicts of interest.
I am also concerned about any effort to cap care hours. Caregiving responsibilities do not end when the approved hours end. My son requires support around the clock, regardless of what the state determines is compensable. Families continue providing care day after day, year after year, often without rest, because there is no one else to do it.
I ask the Commonwealth to consider what would happen if families like mine became so overwhelmed by the system, the lack of resources, and additional administrative burdens that we could no longer continue. My family has provided care for my son for 50 years, and we also cared for my daughter before her passing(43 years). The exhaustion and burnout are real, and new requirements or reduced supports would only make an already difficult situation harder.
If families were forced to step back, where would these disabled adults live? Which agency would assume responsibility for their daily care? Who would be trained and paid to provide the complex support they require? Would the state place them in group homes, and if so, would those homes have appropriate wheelchair accessibility, lifts, transfer equipment, accessible bathrooms, and specialized transportation? Many of these individuals cannot use ordinary transportation and require costly modified vehicles ($40,000 for a used vehicle- 10 years ago) or paid medical transportation. The current system depends heavily on family homes, family vehicles, and unpaid or underpaid family labor.
It seems clear that supporting families in their homes is far less costly and more humane than creating and maintaining enough residential placements, staffing them around the clock, purchasing specialized equipment, and providing transportation for every individual who could no longer remain with family. The state should carefully consider the consequences if parents, siblings, and other caregivers are pushed past the point of being able to continue.
Families are not obstacles in this process; we are advocates, caregivers, and partners. We have firsthand expertise in the complex daily realities of caring for disabled adults with significant needs. Virginia should use that expertise to improve care, strengthen resources, raise awareness, and develop realistic alternatives that support both individuals with disabilities and the families who care for them.
These adults deserve compassion, dignity, and consistent care. Their families deserve compassion as well. Many of us have given up career opportunities, financial stability, personal freedom, and long-held dreams in order to care for loved ones who cannot safely care for themselves. I respectfully ask Virginia not to turn away from the people who need support the most.
Please help families continue helping them. Provide us with the resources, flexibility, and respect needed to keep our loved ones safe, supported, and cared for in the most appropriate setting possible.
Respectfully,
A concerned father