06/10/2026
Yesterday, the Pennsylvania House of Representatives Human Services Committee held an informational hearing on Complex Care Assistant Programs. One of the bills considered was HB1068 which would allow well trained parents and family caregivers of medically complex children to be compensated for providing the skilled care their children need because there is a lack of available nurses in Pennsylvania. Thank you to Achieva for attending and urging lawmakers to support HB1068. We join you in standing with these families!
Meghann Luczkowski, a former special educator from Philadelphia who has spent the last few years working in public health, testified at the hearing today about her son Miles. "What really brings me here today, though, is my favorite role — being Mom to Leo, George, and Miles.
Despite having an otherwise healthy pregnancy with our now 12-year-old twins George and Miles, my husband and I spent 5 weeks in the NICU managing different medical emergencies and interventions for both boys, who fought so hard every day. After those 5 weeks, baby George was strong enough to come home! Baby Miles was born with a rare genetic mutation not shared by his identical twin and was transferred to a specialty ICU in Delaware.
After spending his first 359 days in the hospital, Miles finally came home just 6 days shy of his and George’s first birthday! Miles came home with a tracheostomy (breathing tube), a ventilator (breathing machine), a gastronomy tube (feeding tube in the stomach), a feeding pump, an oxygen concentrator, a pulse oximeter, a suction machine, lots of o2 tanks, and all the tubes, wires, bags, catheters, syringes, and so on that come with having a medically complex condition.
Instead of being stuck far away from us in a hospital or facility, Miles was now smiling in our living room with his portable ventilator next to him.We felt confident having Miles home because we were well trained by the incredible doctors, nurses, RTs, PTs, OTs, and feeding specialists at Nemours on all Miles’ needs. Equally importantly, we felt stable and supported because we had a team of wonderful home care nurses scheduled for all of Miles’ authorized, medically necessary skilled nursing hours, until a couple of months later when the staffing fell apart. The bottom fell out from under us.
During this time, I also made it a mission to try and improve this system that was not working the way it promised. I joined disability advocacy groups and served on DHS committees, learning more than I ever planned about PA’s many related-but-disconnected Medicaid systems. I also learned that many parents are going with no income, no sleep, and no end in sight. Speaking with families and nursing agencies, I know that the children with the highest skilled need cares, like trach-ventilator dependence, are the hardest kids to staff, and those are the families with the fewest natural supports that can ever step in. I personally have been part of several wonderful initiatives at the state level to address needs of families with medically complex children
But the truth is in all those years of many of these well meaning efforts, none of them has demonstrably improved the delivery of home health nursing to kids in PA. Thousands of amazing children like my Miles and Hannah's Colton across the state are authorized for medically necessary support that never get delivered and our families are drowning. Until Pennsylvania is ready to rebuild a system of home health care designed around the needs of the most medically complex people, compensation for the extraordinary medical care that families provide is the right thing to do. This system has to stop banking off the backs of parents desperate to keep their children out of institutions. Any legislation for complex care compensation must include children with high acuity care, like trach-ventilator dependence, like HB1068 does, or else we will have once again left the most vulnerable children and families behind."
We are proud to stand with these families today and urge lawmakers to support House Bill 1068.
