Care providers for Elena

This is a short/ongoing list of providers for Elena. Different places have different names for some of the programs or positions, but these are the ones we have:

Dr. Josh—delivered E.

NICU Nurses—Kitty, Nicole, Paula, Esther, Joe (to name a few favorites)

Anne Peery—lactation consultant

Brenda XXX—my mental health counselor

Dr. Ashby Robert Trundle—pediatrician

Dr. Blackman—developmental pediatrician at KCRC

Dr. Houlihan—E’s developmental pediatrician at KCRC (post-CP diagnosis)

Dr. Mark Abel—E’s pediatric orthopaedic doctor

Theresa McCullough—main PT (EI, private)

Teresa Andrews—sub PT (EI, private)

Jen XXX—sub PT (private)

Sarah James—main speech T (EI, private)

Elayne Fitzgerald—Horses As Healers, therapeutic horseback riding

Cecily, Fun Brian—Little Gym teachers

Bryan Fuller—orthotist

Edward Parelhoff—pediatric ophthamologist

Jeff Elias—neurosurgeon

Sherry Lord—Public School PT

Maureen Tilley—Public School SpT

Judy Spellman—Public School OT (currently not in use, but will be)

IEP coordinator (used to be Neil) Cathy Wojik

Delores Alt (now Cassandra)—Care Advantage Plus rep (Medicaid provider)

Kelly Peters—EI coordinator (lost after we left EI)

Dave Carmines—gait analysis engineer

Patty Payne—PT at KCRC (gait analysis center)

Duane Bickers—dentist

Geisha Goodman—Bright Stars teacher (public school program)

Ruth XX—Bright Stars assistant

Ariel—PE Teacher (public school)

Beth—PE assistant (public school)

Annette--nanny (of course)

Susan XXX—RN, case worker for Southern Health (my/E's primary insurance)

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!!