A Personal Example: Caring for My Adult Son

I would like to share the reality of caring for my adult son, who lives with significant disabilities and depends on others for his daily care, health, and safety.

He attends a day program, but his need for assistance does not end when he returns home. He continues to require support with daily activities, supervision, and safety. As his mother, I remain responsible for meeting those needs during the hours when he is not at the program.

He also experiences seizures, which can occur unexpectedly and require immediate attention. His medical and disability-related needs do not follow a fixed schedule. The level of assistance he needs may vary from day to day, but his need for care does not stop when a predetermined number of authorized hours has been used.

For families like mine, 56 hours per week represents only eight hours of assistance per day. That leaves 16 hours each day, as well as weekends, holidays, and other times when a day program is closed, during which he may still need supervision and hands-on support. A uniform weekly limit does not reflect the actual care he requires or the risks that arise when those needs go unmet.

I am his primary caregiver, and I also have to work to support my family. After working a full day, I come home and immediately assume responsibility for his care. I understand that family members have an important role in supporting their loved ones, but it is not realistic or sustainable to expect one person to provide all necessary care without adequate assistance.

This situation leaves little or no time for me to rest, maintain my health, or participate in ordinary activities. If I need to run an errand, attend an appointment, or take even a short break, I often cannot do so because there is no one available to care for him. Caregivers also need time to rest and remain healthy so that they can continue providing safe and reliable care. Without adequate support, caregivers become exhausted, and the individual receiving care may be placed at greater risk.

For these reasons, personal assistance hours should be determined through an individualized assessment of each person’s functional limitations, medical needs, safety risks, daily schedule, and available natural supports. His care plan should be based on the assistance he actually needs—not on a uniform limit that treats every person with a disability as though their circumstances were the same.

I am his mother, and I will always do everything I can to protect and care for him. However, being a parent should not mean that the entire responsibility for providing essential care falls on one person without adequate support. When authorized hours do not match his needs, the burden is shifted to his family, increasing the risk of caregiver exhaustion and leaving him vulnerable during periods when assistance is still necessary.

We are not asking for unnecessary services. We are asking for sufficient, individualized personal assistance hours to ensure that he can remain safe, healthy, and cared for in his own home. The appropriate number of hours should be based on documented need, reviewed regularly, and adjusted promptly when his medical condition, functional abilities, schedule, or safety needs change.

I respectfully urge DMAS to act with urgency and compassion by ensuring that personal assistance hours are authorized according to each individual’s documented needs rather than an arbitrary weekly limit. Please consider the real-life consequences for individuals and families when necessary care is unavailable. A person’s disability does not disappear after eight hours, and neither does their need for care.

I ask DMAS to protect the health, safety, dignity, and independence of individuals with significant disabilities and to provide families with the support necessary to keep their loved ones safely at home.