Study: Medical Care Lags for RI Women

In a study examining health disparities among women, researchers using Rhode Island data found that women with disabilities receive less medical care and are more likely to experience adverse birth outcomes than typical women.

The study published in the December issue of Medical Care found that over 10 percent of women with disabilities in Rhode Island had a low birthweight infant, compared with 7 percent among non-disabled women. Meanwhile, over 13 percent of disabled women delivered babies prematurely versus 9 percent of typical women.

Doctors Unprepared to Treat Patients with Autism, Study Finds

A new survey finds many health care providers admittedly know little about how to care for adults with autism.

Of 922 providers surveyed, 77 percent rated their ability to treat patients on the spectrum as poor or fair.

Penn Medicine Breaks Silence on Heart Transplant Denial for Autistic Patient

Penn Medicine is part of the Hospital
of the University of Pennsylvania.

Much of the coverage devoted to Paul Corby’s quest to get a heart transplant has focused on the cardiac and transplant side of things. But Paul, of Pottsville, PA hasn’t been denied placement on the heart transplant list for cardiac reasons.
Paul has been denied placement on the heart transplant list, at least in part, because he has autism.
Paul, who has a rare congenital heart disorder called Left Ventricular Noncompaction (LVN), has had three mini-strokes already. He’s 23 years old. His father died of a stroke, caused by the same disease, at age 27.  Penn Medicine at Radnor, part of the Hospital of the University of Pennsylvania, denied Paul placement on the heart transplant list in part because Paul is autistic.
A letter from a Penn Medicine transplant doctor to Paul’s mother, Karen Corby, reads, “I have recommended against a transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior."

Power Cut Off at Home of Child with Special Needs

Nine-month-old Bella was born with a ton of complications.
“Her esophagus wasn’t connected to her stomach and her stomach wasn’t connected to her intestines,” said her mother, Catherine Pennington. “She had seven holes in her heart.”
Five surgeries got her to this point, but the infant requires breathing and feeding machines and the care of a loving mother to keep her alive, but the power to the home and those machines was cutoff Thursday after Catherine Pennington failed to pay the $115.00 energy bill.

Health Clinic for Developmentally Disabled a Success

CHICAGO- Little City resident Tony LaPorte loves to boast that he brushed his teeth and says he can’t wait to go back to the dentist, a remarkable transformation in attitude considering he dreaded those visits not too long ago.

But the 24-year-old, who has Down syndrome and lives on the foundation’s Palatine campus, isn’t the only one to have a change of heart.

A year since opening its Center for Health and Wellness, Little City is reporting similar success stories and numerous other healthy strides due to a partnership with Northwest Community Hospital that overhauled the way residents receive medical and oral care.

“There’s a gentleness here, how we treat folks with intellectual and developmental disabilities,” Little City’s Director of Programs and ancillary Services Bob Shears said.

For Child with Autism, Doctor's Office Can Be a Terrifying Place

The teacher got a frantic telephone call after school one day. All she could hear was screaming.
Then she heard "Hope's" voice.
"Can you hear him? It is Marshall. He won't stop yelling?"
The teacher asked, "Where are you?" Hope answered, "We're at the medical plaza. I am in the waiting area and I don't know what to do?"
"Why are you there? Marshall seemed fine today," the teacher said.
"He needed a check-up," the distraught mother explained.
"Try to reschedule his appointment and I will go there with you tomorrow," the teacher advised.
The teacher wondered why Marshall was screaming. When she went to the medical plaza the next day, she saw the waiting room.

All Grown Up and No Place to Go

Terri Hancharick knew it would be a challenge to find a medical home for her special-needs daughter, Brigitte, in the adult health care system. But she never expected the process to be so frustrating.
Brigitte had been receiving care at Alfred I. duPont Hospital for Children since infancy. But the hospital limits treatment to patients younger than 21, so Hancharick had to assemble a new medical team two years ago.
Hancharick soon discovered that few doctors were taking new patients and the ones who were did not feel confident treating a patient with a medical history as complex as Brigitte's. The 23-year-old has severe cerebral palsy and seizures and is visually impaired and nonverbal.
Transitioning children from pediatric care to the adult health care system can be difficult for any family. But for the parents of a child with special medical needs, the responsibilities are greater and the challenges more complex.