I am a parent and primary caregiver of a fragile, medically complex child and I am deeply troubled by the proposals regarding the paid parent caregiver option starting on page 174 of this FIS Renewal application.
We are a family that doesn’t fit neatly into any particular box, as many of the families who care for medically complex children tend to be. We have spent the past three years on waitlists with several home nursing agencies without ever receiving news of a single qualified candidate. Due to our daughter’s declining health, increasing fragility, and lack of availability of qualified caregivers, we made the very difficult decision several years ago, with the support of her entire medical team, to forego nursing altogether due to unsustainable risk.
For the last several years, we have relied on attendant care to help us manage the intense level of 24 hour care and monitoring our child requires. Prior to COVID, we had several mostly unreliable personal care attendants to assist us in attending to her daily needs. For the last three years in particular, since COVID and since our daughter became ventilator dependent, we have done it all on our own. We came to realize after multiple hospitalizations that our daughter just cannot sustain the infection and mishandling risks associated with outside caregivers coming into our home.
Every virus results in at least a week-long stay in intensive care and every time she gets sick, her health status further declines giving us less “wiggle room” for future illnesses. My husband had to leave his part-time job in spring 2020 because it became impossible for one person to manage the daily responsibilities to our home, the education needs of our three other homeschooled children AND handle our daughter’s 24 hour care. His part-time job income was keeping us afloat, but it would do no good if I succumbed to the incredible stress of managing everything at home on my own.
When the Appendix K paid parent caregiver option became available, we were able to find some stability again. We have been able to ensure that our child is safely cared for at home by the people who know her best.
The restrictions to access of this critical program would completely hinder our ability to participate, while leaving us once again with the entire burden of care and no relief in sight.
There is no personal care agency on this planet that is going to take on a patient with the level of care my daughter requires even with one of her parents as that caregiver. Also, because we are so entrenched in managing everyday life and careers on top of managing the care of our complex child, we have no way to safely leave our child in order to attend whatever onboarding and training would be required with an agency. This is why consumer directed choice of care is SO critical. The proposed points create undue barriers and essentially strip families like ours of our choice to maintain consumer directed care while forcing us to put our child’s health at risk if we want any relief at all.
Lest you forget, parent caregivers are in the unique position of being already trained for the job, already possessing years of experience in the care required by the child, and maintaining a deep personal investment in their child’s well-being. We are already here on location, ALWAYS available, fully understanding of the job and willing to do the hard work for a mere $12.70 per hour. For our family specifically, whose only alternative is private duty nursing, the costs are drastically reduced. A private duty RN costs the state $38.50 per hour. An LPN costs $28.66 per hour. You do the math.
Continued unburdened access to a paid parent caregiver option equates to efficient, safe care for these children, cost savings for the state of Virginia, and much needed financial relief for already overburdened parent caregivers doing the work every day.
Please don’t bury this critical program in all of these unrealistic and unattainable mandates.