I wish to share a slice of life to show impacts of changes to the regulations regarding LRIs.

Our child with disabilities has a long list of co-morbid diagnoses, one of which is life-threatening PICA. This requires our child to have constant supervision for his own safety. We have experienced emergency surgeries, a multitude of X-rays, and medications. Our child is non-speaking and struggles with communication that is understandable by unfamiliar listeners. These are some of the key issues that make a family caregiver the only option for our child.

Despite our efforts to hire outside caregivers, it has been a constant struggle for over 13 years. We've used an agency in the past who sent us caregivers who didn't understand potty-training at all. The same agency sent a caregiver who fell asleep while caring for our child. We had another caregiver who lied repeatedly and shared our personal contact information with her family which is a clear violation of HIPPA. Finally, when employees of the agency were locked out by tax enforcement, we made a change.

Next, we got to experience the revolving door of caregivers who might work for a year. The constant rotation of caregivers was difficult for our child who struggles with transition and thrives with routine. The low pay was a deterrent for most applicants. We had a measure of success with college students studying various therapies or special education. We had to hire almost every year with students graduating and/or moving home. We've now lost out on hiring caregivers due to people needing benefits or making more money for a much simpler work environment rather than assisting with ADLS.

I have been unable to work a full-time job, and most times even a part-time job due to needing to constantly be available to care for my child. Our family teetered on the see-saw of poverty. With one income, my spouse made just enough to make us ineligible for many supports and services, but not enough to keep us feeling secure about basic things that many take for granted. Those were things like having transportation for medical appointments, therapies and not to mention emergency situations. Also, we faced insecurities over having enough food or supplies (Medicaid covers diapers and pull-ups, but no wipes, gloves, plastic sheeting, etc). Due to his incontinence, we have the additional struggle with excessive amounts of laundry which affects utility bills and purchasing additional cleaning products. I have spent countless hours contacting insurance case managers, waiver case managers, therapists (for 3-4 types of therapy), doctors, Social Services case managers, as well as researching to find providers, resources, and support. These are not phone calls and meetings that can be done in a work environment. Then we face long waiting lists for some of these services and supports as well.

LRIs being able to be paid caregivers has been a major change for our child. He has felt more secure in consistency of caregivers and schedule. He doesn't have to be exposed to strangers that continue changing. We do not have to publicly share details regarding his diagnosis in the hopes that someone will want to overlook them or even worse belittle him or our family for things that are developmentally beyond his control.

Please remove Objective Written Documentation and keep LRIs as paid caregivers without the burden of "proof" that families struggle to find people willing to work the necessary hours for low pay with no benefits. Please allow respite for the unpaid LRI caregiver. That can be a small gift to families that are able to find someone who can occasionally provide care but cannot commit to the full extent of care needed for our loved ones with disabilities.