I am a single mom of two special needs daughters. I would like to ask that you advocate for parents to remain the paid caregivers of their children under the CCC+ Medicaid Waiver. Both of my daughters utilize the waiver. Until a year and a half ago, my adult children were able to be caregivers for my daughters, but they have since moved out of state. Prior to their moving, I put an add on Care.com in anticipation of hiring new caregivers. All of the responses I got stated that it would not be enough money for them to take the job, especially when I told them that sometimes they might have to wipe my 14 old’s bottom as she doesn’t have good hygiene. (They could get a much easier job at Target making more money.) Additionally, since I have two daughters on the waiver, I must have two caregivers working, as the waiver does not allow one person get paid to watch both girls. I haven’t been able to find one person to work, let alone a second one. I am extremely grateful that parents have been allowed to be caregivers as I would not have been able to find help. I have been unable to work as I am caring for my children. I am very concerned that as of November 12th, it has been stated that I will only be able to remain as their paid caregiver until I can find someone else. Parents of special needs children know their children best. I know their needs, their triggers, and their traumatic history. In the event that I could even find people to hire, having strangers do that job puts my children at risk emotionally and mentally.
There is also talk of parents having to be hired through a separate agency. Every day is a challenge raising special needs children, from dealing with explosive toddler-like emotional outbursts in my teenagers, to helping change an adult diaper for my daughter who is on her period. To add yet another agency to an already confusing mix would complicate matters and allow for mistakes to be made. We parents already have challenges dealing with four different agencies, Virginia Medicaid, Anthem Health, Moms in Motion Service Provider, and PPL. If there is ever a problem, I’m never really sure who will handle it and it takes precious time away from my children to figure out what to do. To add another agency would complicate the situation even more. Additionally, a parent having to be employed by a separate agency to care for their own children is ridiculous and insulting.
This waiver has helped our family tremendously and has given my girls such a peace of mind to know that I am going to be there for them and that a stranger will not be caring for them. I would ask again to please advocate of behalf of parents remaining paid caregivers of their children who utilize the CCC+ Medicaid Waiver.