Dear Virginia Department of Medical Assistance Services,
I am a mother of an adult son with autism, ADHD, and intellectual disabilities. I am writing to express my strong opposition to the proposed 56-hour weekly soft cap on Personal Assistance services under Virginia's Developmental Disability Waivers.
The needs of individuals with developmental disabilities cannot be measured by a fixed number of hours.
My son requires ongoing support, supervision, and assistance to navigate daily life safely. Although he attends an adult day program, his care needs do not disappear when the program ends. I must continually coordinate his transportation, ensure his safety, manage unexpected disruptions, and provide support throughout the remaining hours of the day.
Even transportation alone has been a significant challenge. When services are delayed or unreliable, families must immediately step in. These situations demonstrate how fragile a family's care arrangements can become when adequate support is not available.
As my son's primary caregiver, I carry most of his daily caregiving responsibilities on my own. When support services are unavailable or insufficient, I must step in and fill those gaps, regardless of my work responsibilities or my own health.
I am also growing older, and I worry deeply about how long I can continue providing this level of care without adequate assistance. Parents should not have to sacrifice their health, financial stability, or ability to work simply to ensure their adult children are safe and properly cared for.
Fifty-six hours per week equals an average of only eight hours per day. For many individuals with significant developmental disabilities, this is simply not enough. Their needs continue during evenings, weekends, holidays, and unexpected emergencies.
I am particularly concerned that the proposed exception process could create additional barriers for individuals whose needs arise primarily from cognitive, developmental, or behavioral disabilities rather than complex medical or nursing conditions. The absence of intensive medical needs does not mean that an individual can safely remain without supervision.
Families already face enormous challenges finding reliable, qualified caregivers. The shortage of available caregivers and the difficulties of arranging dependable services make an already demanding situation even more stressful. Additional restrictions and administrative requirements could make it even harder for families to obtain the assistance they desperately need.
I respectfully urge DMAS to:
Reconsider the proposed 56-hour soft cap and continue authorizing Personal Assistance hours based on each individual's documented needs.
Ensure that any exception process fully recognizes cognitive, behavioral, and developmental support needs, not only medical conditions.
Protect continuity of care and prevent reductions in necessary services while exceptions or appeals are under review.
Recognize the long-term physical, emotional, and financial burden placed on aging family caregivers, particularly those who carry most caregiving responsibilities on their own.
Individuals with developmental disabilities deserve the opportunity to live safely and with dignity in their own communities. Their families need a system that supports them, rather than one that creates additional uncertainty and obstacles.
Please remember that behind every proposed policy change is a real person and a family working every day to provide a safe and meaningful life.
Our children do not stop needing care after eight hours, and parents cannot be expected to fill every gap in the system indefinitely.
Thank you for considering the voices of families like mine.
Sincerely,
A Virginia Parent and Primary Caregiver