“Aging Out” Yet Still Disabled

Posted on March 29, 2019 by Alice Kenny  |  Share

Cardinal Dolan Seeks Solutions at Elizabeth Seton Pediatric Center

His Eminence Timothy Cardinal Dolan, along with Monsignor Kevin Sullivan, Executive Director of Catholic Charities of the Archdiocese of New York yesterday, March 29, 2019, visited the Elizabeth Seton Pediatric Center in Yonkers, NY – the nation’s largest post-acute care center for medically complex children – to call attention to the “aging out” crisis impacting residents who reach age 22. By State regulation, this makes them too old to continue receiving care at the Pediatric Center. 

“What happens when they’re 21?” asked Cardinal Dolan. “They need full time care; we owe that to them because of how much we love them.”

The Pediatric Center is home to 169 medically complex children of all ages up to 21 who need constant care and support. It offers the vital medical, nursing, therapeutic and educational services to help children reach their greatest potential.   

Tragically, 30-percent of the Pediatric Center’s residents who age out die within 14 months due to the lack of long-term care options that can adequately meet their specialized needs

Nationwide Crisis

The aging out crisis impacts medically complex children across New York State and the nation. According to a 2016 study, 24,000 medically complex individuals under the age of 35 were enrolled in New York’s Medicaid program, and this number was estimated to be growing at a rate of 5 percent annually. Of these individuals, 9,100 were in the aging out age range. 

 Nationwide, there are approximately three million medically complex children, and this number is also increasing at a rate of 5 percent each year. 

Geriatric nursing homes are often the only long-term care options for children who age out of the Pediatric Center. Most such facilities are not well-suited, nor were they intended, to meet the physical and emotional needs of medically complex young adults.

Forced to Leave Place They Call Home

During the Cardinal’s visit yesterday, he gathered with a group of the Pediatric Center’s teenagers, families and staff to hear directly about how aging out of the facility will drastically upend the care they depend on by forcing these medically complex young adults to leave what many have called their homes for their entire lives.

In total, 52 of the Pediatric Center’s residents will reach age 21 by 2024, which is three times greater than the number of children in the same age group just five years ago. This increase is driven by tremendous advances in medical technology that have allowed more children to thrive into young adulthood.

“We strive to give our children opportunities to experience the fullness of life, but once they age out of our care, their options are severely limited and the consequences are dire,” said Pat Tursi, CEO of Elizabeth Seton Pediatric Center. “Modern advances in medicine and technology have been blessings for our medically complex children, but these same advances now present us with a problem that must be solved within five years before dozens of our children reach age 21.”

Vision to Solve This Crisis

Staff shared with the Cardinal their vision to solve the crisis: a first-of-its-kind facility to provide specialized care to medically complex young adults, just steps from the Pediatric Center.

The Center’s track record of success offers strong indications that the proposed facility would replicate and reinforce the Center’s achievements. Now in its 31st year, the Center has been repeatedly recognized by the New York State Department of Health and the Centers for Medicare & Medicaid Services.  It also receives five-star ratings in the “Best Nursing Homes” category of U.S. News & World Report.

 “These are still young people and the older they get here the more they’re beloved and the more they’re an example to the other kids that come in,” Cardinal Dolan said.  “So, if we can keep them in this embrace it will be so much better for them, so we have to work on that.”

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