My name is Shane, and I have lived my life in the Commonwealth of Virginia as a person with significant disabilities who depends on the care and support of my family every day. For decades, my family has lived, worked, and paid taxes in Virginia while asking very little from the state. My parents, with help from our family, cared for my twin sister and me themselves, relying on what insurance would cover, limited nursing support when available, and their own resources to meet needs that were not otherwise addressed.
After my mother passed away, the responsibility of providing full-time care became even heavier for my father and my older sister. I am wheelchair-bound and require care twenty-four hours a day, seven days a week. Reliable outside care has been extremely difficult to secure because suitable caregivers are hard to find, especially caregivers who are willing to work for minimum wage and are able to use the specialized equipment required to care for me safely. Liability concerns have made the situation even more difficult.
My family never sought extraordinary services from the state. They paid for home modifications, including ramps, accessible bathrooms, and vehicle adaptations for wheelchairs. They often struggled financially, including making house payments, while still trying to remain within income restrictions so I would not lose Medicaid eligibility as I needed the insurance. If my father earned too much, our family was penalized. Despite these challenges, my family continued to shoulder the responsibility themselves.
My mother has since passed away, as has my twin sister. I am now an adult, and as my father and sister ages, I know they remain deeply concerned about my care, my future, and the support available to me. Our family continues to seek guidance and assistance from the state on my behalf; however each and every year it gets harder and harder for them to get the help I need. Cut back and denial for the same care I need happens each and every year and that’s because of the restrictions continually exposed on us.
Over the years, my needs have become more extensive. My parents 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 I require. For people in my position and for the families who care for us, proposed reductions or caps on care hours are deeply concerning.
I am especially concerned about proposals that would remove the Service Facilitators my family has chosen and relied upon. These facilitators help families like mine 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. My need for support does not end when the approved hours end. I require assistance around the clock, regardless of what the state determines is compensable. My family continues providing care day after day, year after year, often without rest, because there is no one else to do it. Your need for them to clock just adds another layer to their exhaustion of being scared I will lose service or they will lose pay due to noncompliance.
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 they could no longer continue. My family has provided care for me for 50 years, and they also cared for my sister before her passing for 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 people like me live? Which agency would assume responsibility for my daily care? Who would be trained and paid to provide the complex support I require? Would the state place me in a group home, and if so, would that home have appropriate wheelchair accessibility, lifts, transfer equipment, accessible bathrooms, and specialized transportation? Many people with needs like mine cannot use ordinary transportation and require costly modified vehicles, including vehicles that cost approximately $40,000 used even 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 people like me in our family 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; they are advocates, caregivers, and partners. My family has firsthand expertise in the complex daily realities of caring for a disabled adult 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.
People like me deserve compassion, dignity, and consistent care and to live at home with the caregivers they choose. Our families deserve compassion as well. Many 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 my family continue helping me. Provide us with the resources, flexibility, and respect needed to keep me safe, supported, and cared for in the most appropriate setting possible.