As a parent of 2 children with special needs I have come to learn the exact level of care my kids need. Not only do they both have extremely rare neuromuscular conditions, one has ADHD and the other has Autism and a gtube. They require several medications on a strict schedule or else they become at risk for choking, tripping, falling, migraines, fatigue, and whole body pain. I have given both of my children CPR over 6 times each with the first time being 7 weeks old on the side of I-95.
when it comes to caregivers it is extremely difficult to find reliable, trustworthy, and capable people at the set wages in our high cost area. We have been through it all from constant no-shows, theft, negligence, drug use in our home. We had one of our attendants steal a wedding ring, prescription drugs, our vacation fund, our kids’ piggy banks, and much more while she was working respite. We caught that on video and also a phone conversation about buying drugs, her leaving our 9 month old who couldn’t sit up on the edge of a counter and then walk away, and so on and so on. She was found guilty in Loudoun County court and had to pay restitution and was banned from being a caregiver through the state.
But the agencies will flat out lie in order to get money. When we were first granted our waiver, we went the agency route thinking it would be better since we didn’t have to screen people initially. With our daughters’ respiratory complications we placed a requirement that attendants be non-smokers and yet they sent a smoker and told the caregiver to lie about it. We gave it another shot but with another agency and they hired someone without conducting a background check so they weren’t approved by the state. Because the agency hired them without approval they couldn’t be paid so they tried to extort us to foot the bill or they would fraudulently report us to the state for fraud. I will never trust an agency to conduct any type of oversight over my child’s care, as they do not my the wellbeing of my children as their top priority, they only care about the money.
allowing parents to go the consumer direct route is not only the best option for the ones receiving care, it is best for the state due to lower costs and less fraud. It is also against state and federal policy to require that a parent work through an agency for their child’s care and ban the consumer direct option. Do what supports the families, providing care to their children is a full time job and one that doesn’t stop when the work day is over, adding hoops to jump through only adds to the stress and anxiety they already experience on a daily basis. It costs you nothing to continue the same option that what was allowed during the pandemic as other states had been allowing it long before the pandemic.
I hope that you consider my comments as well as all of the others, and can put yourselves in the shoes of these parents.