My 23-year-old son has multi-complex disabilities. He has autism, severe chronic diabetes, he is 100% profoundly deaf, and completely non-verbal. For 23 years, my wife and I have broken our bodies to keep him alive at home. My wife now has a severe Lumbar Herniated Disc from lifting him, leaving her completely knocked down by the evening. I must take over a 100% physical caregiver shift as soon as I return from my job and throughout the entire weekend.

 

Because my son is completely deaf and non-verbal, we cannot use verbal commands. We must constantly establish eye contact and use visual sign language for every single thing. During his traditional Korean meals, we have to physically pick up side dishes and place them onto his spoon for every single bite to prevent diabetic shock. When he tries to lie down immediately after eating, we must repeatedly use sign language to physically redirect him and keep him upright for safe digestion. For his diabetes management, he walks on the treadmill for 1 hour every day, and one of us must stand inches away, providing strict physical guarding because he cannot hear machine failures and faces extreme fall risks. At night, we cannot sleep because we must actively guard the bathroom so he does not leave faucets running, which previously caused a catastrophic house flood because he cannot hear running water.

 

Our current 86 weekly hours is already a severe deficit for our painful daily reality. Restricting personal assistance to a 56-hour cap is a cruel death sentence to aging parents like us. Please understand that the only reason a child with such severe disabilities can live safely and peacefully right now is solely due to our relentless, high-quality care—it never happens on its own. I sincerely hope that the government stops inflicting further pain and trauma upon families who are already doing an exceptional job keeping their children alive and well.

 

Furthermore, managing and keeping these individuals safe within the home is, in the long run, immensely beneficial to the state government and ultimately saves huge amounts of tax dollars for the entire nation. If you cut our hours, my wife and I will physically collapse, and we will have no choice but to place our son in a state facility, which will cost the Commonwealth of Virginia 5 times more money.

 

Do not balance your budget on the backs of severe, deaf-mute disabled children and their aging, broken parents. We completely reject this 56-hour cap proposal.