Our family is in desperate need of the other parent assuming the role of the Employer of Record (EOR), and I urge you to consider the following concerns and implications:

Medicaid waivers allow families to provide specialized care for their children in the comfort and safety of their own homes rather than resorting to nursing home care. This arrangement already provides a significant cost-saving benefit for the state. However, the regulations you propose conflict with the definition and principles of the waivers we agreed upon.

Many of our children require specialized, round-the-clock care that cannot be adequately provided at the proposed $12-$16.45 per hour. It is important to recognize that the demands placed on caregivers who provide such specialized care far exceed those of typical jobs, even those offering higher wages. For instance, one can work at a place like McDonald’s for $20 per hour without coping with the extreme demands and challenges children with complex needs require.

Allowing parents to act as paid caregivers is a compromise we have reached in our agreement, acknowledging the unique expertise and unconditional dedication we possess for our children's care. If the state cannot adjust the wage to match the demand for specialized care, it becomes essential to compensate parents who assume this role. The responsibility for caregiving must be retained; someone must be there to fulfill these crucial duties. Our children, who rely on specialized care, are not going away or disappearing; they require our support and attention more than ever.

I implore you to reconsider the proposed regulations, considering families’ significant challenges in finding and affording appropriate specialized care for their children. Adequate compensation and recognition for parents who assume the EOR role is vital to ensure the high-quality care that our children require to thrive.

Thank you for your attention to this matter. I sincerely hope that you will consider the urgent needs of our families and work towards a solution that upholds the integrity of Medicaid waivers while addressing the pressing challenges we face.