House Bill 1960 Vulakovich – (PN 2674) Amends the Prescribed Pediatric Extended Care Centers Act changing the age limit from eight years to 21 years of age effective immediately. HB 1960 moves to the PA Senate Committee on Appropriations in January 2012.
Parents of medically fragile children need options. As the first Pediatric Extended Care Center (PECC) in Pennsylvania, Child’s Way®, a program of The Children’s Home of Pittsburgh & Lemieux Family Center, gives families an alternative and supplement to home nursing and therapeutic care, which medically fragile children require. Child’s Way is dually licensed by the Department of Health as a PECC and by the Pennsylvania Department of Public Welfare as a day care center.
Unfortunately, current law restricts the care of children in PECCs to the age of eight; leaving no options for parents whose children age-out—children like A.J.
On December 16, 2011, A.J., who has attended Child’s Way since he was just five-months-old, turned nine. A.J. has Congenital Muscular Dystrophy, chronic lung disease, scoliosis and seizures. He is ventilator dependent, requires a feeding tube, and receives special liquid feedings to allow him to thrive and control seizure activity. A.J. is administered four medications for seizures, aerosol treatments for his lung disease, and several other life-sustaining medications and treatments every day. While at Child’s Way, A.J. has consistent nursing care, which has aided in evaluating and preventing many healthcare complications.
A.J. also receives age appropriate interactions with peers. Despite being “locked in” with normal cognition, he takes great joy in participating in group activities and communicates through facial expressions. The benefits of participating in activities and interacting with other children at Child’s Way are invaluable to A.J.’s life and development, which he could experience nowhere else.
While A.J. attends the Western Pennsylvania School for Blind Children during the school year, both of A.J’s parents are employed outside of the home, which makes Child’s Way an irreplaceable resource for their family. During the school year, he attends Child’s Way before and after school and utilizes the summer program. A.J. has also received post-surgical care at Child’s Way for implanted rods to straighten his spine, as well as surgeries for his tracheostomy. Spending his recuperative time at Child’s Way with our nursing staff and specialized care allowed his parents to return to work sooner, helping them to retain their healthcare benefits and livelihood to support their family.
Pediatric Extended Care Centers, such as Child’s Way, provide the continuous therapeutic intervention and skilled nursing supervision that medically or technologically dependent children require. The cost of providing service through PECCs is also less expensive than services provided through in-home care such as private duty nursing. Allowing children to receive the quality care they deserve from PECCs until the age of 21 is a service we as a community need to provide to children and families.
About the Children’s Home of Pittsburgh & Lemieux Family Center
The Children’s Home of Pittsburgh, established in 1893, is an independent, non-profit licensed organization that promotes the health and well-being of infants and children through services which establish and strengthen the family. These programs include: Adoption — serving infants, birthparents and persons seeking to adopt, Child’s Way® — a pediatric extended care center serving medically fragile infants and children, and a 24-bed Pediatric Specialty Hospital — infant and pediatric units that provide short-term transitional care from hospital to home for those who are technology dependent and who may suffer from life threatening illnesses..