Protect medically complex individuals: preserve safeguards and stop shifting the burden onto family caregivers

I am the mother of an adult daughter who receives services through the CCC+ Waiver and is on the waiting list for a Developmental Disabilities waiver. My husband provides her 53 authorized hours of attendant care each week. Her older sister provides respite care on weekends.

My daughter has medication-resistant focal epilepsy. She is nonverbal, and signs that a seizure may be approaching are extremely difficult to recognize. Her seizures are unpredictable, and a focal seizure comes in a variety of ways. A focal seizure can spread across the brain and turn into a generalized tonic-clonic seizure, which can be dangerous. Any type of seizure leaves her completely off balance, requiring 24/7 monitoring to keep her safe. We must monitor her around the clock. She also has a horrific early childhood abuse before she came to us. Her disabilities are neurological, much like a traumatic brain injury. But she is beautiful, and we cherish her as part of our family.

“Monitoring” may sound simple on a form. In our home, it requires sustained attention to subtle changes in a person who cannot verbally tell us what she is experiencing. That responsibility continues through the night and far beyond the 53 hours Medicaid pays my husband to provide care.

Three times, we have faced attempts to reduce her attendant hours. Her hours have ultimately remained unchanged due to the many safety concerns she faces. But each attempt has created horrific anxiety for our family. We are left fearing that the support we depend on to care for her safely will be taken away.

The fact that her hours remained does not erase the harm caused by repeatedly threatening to take them away causes. Families should not have to live in recurring fear of losing essential care while already managing unpredictable seizures and continuous monitoring.

We recently appealed a denial of equipment for nighttime monitoring. That denial was overturned, and the equipment is now approved. Numerous supports are necessary and help us care for her. They do not eliminate the need for human attention and response.

This is the reality against which DMAS should evaluate these changes.

I support the ARC and oppose removing the mandatory higher-level review when a CCC+ reassessment finds that an individual no longer meets waiver eligibility requirements. Our successful equipment appeal demonstrates that an initial denial can be overturned when challenged. Although that appeal involved a different decision and process, it illustrates why review safeguards matter.

Our family has already experienced three attempts to reduce attendant hours and a denial of monitoring equipment that was overturned. Weakening review protections would place still more responsibility on families to identify errors, gather evidence, and fight for necessary support.

Retaining appeal rights does not replace the value of catching an incorrect decision before essential services are lost. DMAS should preserve the additional eligibility review.

I also oppose eliminating independently chosen services facilitation without enforceable protections for continuity, choice, and accountability. Families need accessible assistance from people who understand the individual’s needs and can resolve problems promptly.

I oppose eliminating our ability to choose a service facilitator such as Moms In Motion. Our current facilitators listen and bring lived experience of caring for children with complex needs. DMAS should preserve access to qualified existing facilitators rather than require families to move to support brokers employed through payroll contractors.

DMAS should require uninterrupted personal-care and respite authorizations, timely transfer of records, meaningful family participation, and a clear route to resolve problems outside the payroll contractor. A transition to support brokers must not become another occasion to reduce established hours without an individualized, documented basis. No family should lose care or attendant pay because an administrative transition fails.

The proposed 56-hour threshold for CL and FIS also concerns me because my daughter is waiting for a DD waiver. Any exception process must meaningfully consider seizure-related risks, communication limitations, and monitoring needs—not merely whether someone can complete a particular physical task.

Although removing the live-in caregiver EVV exemption is being implemented separately, its hardship must not be ignored. We have already begun preparing for electronic visit verification. Requiring live-in family caregivers to sign in and out imposes an administrative clock on care that continues around the clock.

Consider this foreseeable situation: my husband reaches the end of his paid shift just as our daughter shows a subtle change that may signal a seizure. She cannot tell him what is happening. He must watch her closely and be ready to assist because a seizure can leave her off balance. At that moment, recording the end of a shift competes with his attention to her safety. If he attends to her first and misses the scheduled clock-out, he then faces a timekeeping correction while the caregiving responsibility continues.

Or consider the beginning of a paid shift after a night of family monitoring. My husband is already present and caring for her. There is no arrival at the home to mark the start of care, and no departure that ends his responsibility. The distinction is between paid and unpaid time—not between being responsible for her and being free of that responsibility. Our family cares for her way beyond the 53 hours allotted for her care. My question: Please explain what sense does it make to increase a hardship on families when they already provide care way beyond the number of hours alotted?

Our entire family is constantly on the personal clock, whether anyone is on the payroll clock or not. We understand that only authorized services and hours may be billed. But an electronic timestamp cannot capture the continuous responsibility of keeping our daughter safe, and attending to her needs must come first.

DMAS should restore the live-in caregiver exemption. While these requirements apply, it should provide clear procedures for seizure-related interruptions, workable corrections, and protections against payment disruptions caused by technical failures or necessary attention to the person receiving care.

Respite is essential to sustaining our family’s caregiving arrangement. Equipment, a service dog, and committed relatives do not make the responsibility disappear.

Families should not have to repeatedly defend essential support while providing the care that allows their loved ones to remain at home. Preserve the review safeguards. Protect authorized care and respite. Maintain meaningful consumer choice. Evaluate administrative requirements against the realities of caregiving.

Our daughter’s safety—and our family’s ability to keep caring for her—must carry more weight than administrative convenience.