I strongly oppose a weekly cap on caregiver hours because it does not reflect the actual care and supervision my son needs to remain safe at home.

My son, David, is 22 years old and has Down syndrome and autism. He is nonverbal, and his developmental level is approximately that of a six-year-old child. He cannot independently manage essential daily activities, communicate his needs verbally, or understand serious dangers.

David requires extensive hands-on assistance every day. I must feed him nutritional drinks and puréed food six times a day. He needs regular prompting and assistance to use the bathroom; without this, he may hold his urine all day. He also continues to have toileting accidents. I must wash his face, brush his teeth, clean him after bowel movements, and help him shower every day. These are essential daily needs that cannot be postponed because a weekly limit has been reached.

David also has severe meltdowns and behaviors that can endanger himself and others. When upset, he may hit others, pinch them hard, and sometimes bite them. During meltdowns, he may also bang his head, dig at or scratch his skin until he bleeds, or throw objects. He needs close supervision and timely support to help prevent escalation and injury. Consistent care from someone who understands his communication, routines, and behaviors is essential to keeping him and those around him safe.

His sleep disorder means that his care needs continue throughout the night. We have experienced frightening incidents involving our gas stove. On one occasion, he came downstairs during the night and turned on the gas. If we had not discovered it in time, the consequences could have been catastrophic. He has also turned on the stove and placed objects on it, causing them to burn.

Because of these nighttime dangers, my husband slept on the couch beside the kitchen for approximately a year so he could monitor David and respond quickly. These are actual incidents that show why he cannot safely be left unsupervised.

David requires care and supervision 24 hours a day. A weekly limit on caregiver hours does not reduce those needs. It leaves our family responsible for providing the remaining care without adequate support, increasing exhaustion and making continuous supervision harder to sustain.

I am asking for an individualized assessment that recognizes David’s disabilities, extensive personal care needs, nighttime risks, self-injurious behaviors, and inability to protect himself. His needs cannot be adequately measured by a uniform weekly cap.

Please do not impose a blanket limit that disregards these circumstances. Please preserve meaningful access to exceptions and approve sufficient caregiver hours based on each person’s actual needs. For David, adequate caregiver support is essential to preventing serious harm and allowing him to continue living safely at home with his family.