PPS Early Intervention

Assistance available as electric bill costs rise Customers of Duquesne Light and West Penn Power saw their bills increase this month. West Penn Power customers are paying about 10.3% more for electric, and Duquesne Light customers are paying about 2.84% more as of June 1. “Electricity bills are increasing at a rate that is unfortunately outp...

New space for Pittsburgh children to play, learn opens in Troy Hill Students at a local school have a new place to play and learn outside

PLEASE NOTE: All ELRC Region 5 offices will be closed this Friday, June 19, in observance of Juneteenth. If possible, please reach out with any concerns or requests by end of day Thursday, June 18; otherwise we will be happy to assist you on Monday, June 22.

Summer Meals are back at the Library! Carnegie Library of Pittsburgh is participating in the 2026 Summer Food Service Program (SFSP) in order to ensure Pittsburgh youth have access to free food during summer vacation. This is … Continued

From our friends The Lindsay Theater:

Toy Story 5 sensory friendly screening on Saturday, June 27, at 10 a.m. Tickets are currently on sale for our discounted rate of $8.75 each.

More information and tickets here: https://ticketing.useast.veezi.com/purchase/29115?siteToken=6avxdqr7sn7fr75807a5k307jm

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.

Hannah Brown, a mother and full-time caregiver of her 11-year-old son, Colton, testified at today's hearing. She said, "My Colton has Spinal Muscular Atrophy Type 1. Colton is tracheostomy dependent, ventilator dependent, and feeding tube dependent. He requires skilled medical care and supervision 24 hours a day, 7 days a week.

For the past eleven years, I have been his nurse, caregiver, advocate, scheduler, therapist assistant, and mother. When people hear the phrase 'parent caregiver,' they often think of normal parenting responsibilities. That is not what I am talking about today.

Colton’s care is especially delicate. He requires constant supervision and care. My husband works nearly 80 hours a week to support our family.

Like many medically fragile families, we often fall into the gap where we make too much to qualify for assistance but not enough to offset the financial impact of full-time caregiving. Parents like me are not asking to be paid to be parents. We are asking to be recognized for the skilled medical care we are already providing.

We are already filling gaps created by nursing shortages. We are already preventing hospitalizations. We are already keeping our children safely at home. And we are already saving the Commonwealth money every single day. The question is not whether parents are capable of providing this care. We prove that every day."

Hannah is one of the mothers who shared her powerful testimony in support of House Bill 1068 - legislation that would allow well trained parents and family caregivers of medically complex children to be compensated for providing the skilled care their children need when nursing support is unavailable. We are proud to stand with these families today and urge lawmakers to support House Bill 1068.