Medicaid

My husband and I both work, and we live relatively comfortably. After paying the nanny and Elena’s bills, though, I started to seriously question if it was worth me keeping my job. We seemed to be “hemorrhaging money”, and Elena’s next eye surgery was looming, and the doctor was out of network so we were on the hook for a couple thousand dollars. My insurance only covered 30 hours of physical therapy per year, and our bills were piling up. I started asking if there was some other kind of medical coverage available to us, as parents of a disabled child. Our Early Intervention Case Coordinator mentioned two main types, Social Security Benefits and Medicaid. Social Security can issue checks per month—a diagnosis of cerebral palsy is an automatic qualifier, as long as the household income is below a certain level. Medicaid is also income-based. My husband and I make too much money to qualify for either of these programs. Our coordinator mentioned there were 2 “loopholes” we should go for, which might get us into a program where Medicaid income qualification was based on the child’s income, not ours. One was the Mental Retardation Waiver (MR) and the other was the Elderly Care and Disabled Care Waiver (ECDC). We could try the MR waiver b/c Elena was obviously behind in her milestones, and for at least a couple of years, could not be proven to not have mental retardation b/c they don’t really cognatively test babies and toddlers. She knew 2 families that had been waiting on this, one had been waiting for SEVEN YEARS. The ECDC waiver pays in-home caregivers (not parents), a certain amount of hours per week based on need. Normally this is given to the elderly, who cannot cook, walk, bathe, etc. themselves—but infants have many of the same needs. Since we already had an in-home caregiver (the nanny), and Elena needed total care, I decided to go for this one. Once in on either of these waivers, complete Medicaid coverage (as Elena’s secondary insurance) would follow. Our coordinator had never had a parent try for the ECDC waiver, so she didn’t know how long it would take for me to get an answer. I happen to be very nice, but persistant, on the phone—and demand to talk to an individual instead of a machine or automated menu whenever possible. This really worked out for me. We had our first visit from the Managed Care office at our home in XXX weeks. We made it through on the waiver and got complete Medicaid coverage. The entire process, from my first phonecall to the green light, took XX weeks. This secondary coverage has been a lifesaver!!

Annette

We didn’t know the first thing about hiring a nanny. We looked online to see what they made, which is variable—but the bottom line seemed to be it was at least twice the cost of daycare per week. That stung, but we were convinced that Elena needed to be home during her first winter. I wanted someone who loved kids, who had experience with preemies, who was college-educated, and who knew infant first aid/CPR—basically, I wanted me as a nanny (but who was willing to work for much much less). Ideally, we did not want a live-in caretaker, but we were trying to keep an open mind. We also decided we would not hire an illegal worker, as we would be paying them in accordance with the tax laws. I thought I found a good candidate, but she wanted 20$/hr, and this was her first job—and she was only planning on working for a season! We had an excellent reference from my husband’s coworker. This woman did not meet all the expectations on my list—but she had 7 years experience, loved children (but had none of her own, which I considered an advantage). We met with her, and it was hard to gauge whether or not it was a good fit, but we were out of time. Her asking salary was actually below our agreed weekly minimum. We decided to hire her for a “month trial” basis, where either of us could pull out with no hard feelings. We had been paying the daycare “on retainer” until we were happy with the home care situation. At the end of that trial period, we bumped up her pay, and everyone was happy—she was happy with her job and extra happy with her pay, and we were satisfied we weren’t taking advantage of her services. It turns out our nanny not only loves kids and has great experience, but she also had a foster sister with CP and she was a preemie herself. By my request (and I paid for her time), she got infant CPR/first aid certified, and she accompanies us to nearly all Elena’s therapy appointments. When Elena was an infant, she wrote down what she ate and what kind of diapers she made, and any changes in her behavior. As Elena gets older, she does PT at home with Elena while we are at work, reads to her, and tries to teach her new skills. Elena calls me at work every day after her lunch. Sometimes I wonder if my daughter has a closer relationship with our nanny than she does with me…but maybe all parents wonder that. I bought a clunker car as my work commute car, so the nanny could take Elena out to Storytime or lunch, or whatever (she has a great driving record) in our nice safe Forester. Hiring Annette was one of the best things we ever did.