On-Air Highlights

Going Home

Written by Keira McGuire | Oct 26, 2018 4:00 PM
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Imagine living somewhere you didn't choose.  Being told you can't love or leave.  For decades, that was the case for people with intellectual disability.  

The history of state-operated institutionalized care for people with intellectual disabilities in Pennsylvania began in 1897 at The Polk Center.  Not long after Polk opened, construction began on the Eastern Pennsylvania State Institution for the Feeble-Minded and Epileptic.  The institution, which would later be known as Pennhurst, was designed to be a stand-alone school and hospital.  Experts at the time felt it would be a safe place for people with intellectual disabilities.  However, it wasn't long before it became overcrowded and understaffed.  In 1968, a television expose by NBC10's Bill Baldini known as Suffer the Little Children gave the public a look at what was going on inside the walls of Pennhurst.   Family members were outraged by the images of abuse and neglect they saw, and the community acted.  In 1987, the doors to Pennhurst closed for good.  

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A portion of the Pennhurst campus as it appears today. Photo credit: Keira McGuire

The conditions found at Pennhurst were not exclusive to Pennhurst.  Jean Searle was institutionalized at the age of 12.  She spent years in an institution before leaving to live in the community in 1984.  During her institutionalization she says she received "harsh punishment."  After becoming pregnant and giving birth inside the institution, Jean says she was not allowed to hold her son before he was taken away from her.

Today, Jean is Co-President of the Pennhurst Memorial and Preservation Alliance - a group dedicated to honoring and memorializing the ongoing civil rights struggle of Americans with disabilities.
In 2016, WITF premiered i go home, a one-hour documentary that covered the history of Pennhurst and its closure.  The documentary aired on public television stations across the country and is widely used as a teaching tool today.  

Since the closure of Pennhurst, many institutions across the country have followed suit.   Fourteen states have closed all state-operated institutions in favor of community-based supports.  In 2017, Pennsylvania announced a plan to close Hamburg State Center, one of five remaining state centers for people with intellectual disability.   The 80 remaining residents of Hamburg transitioned to life in the community over a span of about 19 months.

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Gordie Bensing, a resident of Hamburg for over five decades, now prepares to leave at the age of 60. Photo credit: Keira McGuire

Gordie Bensing was one of the last residents at Hamburg.  He came to the institution when he was just 5 years old.  After over five decades at Hamburg, he received the news that he'd be moving to the community at the age of 60.  Gordie now lives with two other men in a group home in Lancaster County.   

"Research shows that when an individual with an intellectual or developmental disability lives in a community setting, quality of life improves, and more opportunities arise for social participation, community integration, relationships with family and friends, and employment," said The Department of Human Services Secretary Teresa Miller.

Today, most Pennsylvanians with intellectual disability are living in the community.  Almost half of them are living in community group homes with six residents or less, according to the 2016-2017 Independent Monitoring for Quality Report.  Another 23% of people with intellectual disability are living in a relative's home according to the same data.   

But, does living in the community mean people with intellectual disability will be part of the community?

The answer seems somewhat unclear.  Today, life for people with intellectual disability varies.  Many people with intellectual disability receive day services through the Medicaid Home and Community Based Waiver Program.  EARS in Ephrata provides services to about 150 people every day between a day program and a sheltered workshop.  Unless they're on a trip into the community, people who attend the programs at EARS are mainly interacting with others with disability or paid staff members.

On the other end of the spectrum, at Millersville University some with intellectual disability attend an inclusive studies program.  Students with intellectual disability participate in the same classes as students without.  Daniel Castellanos graduated from the program in 2016 and delivered the commencement speech to his peers saying, "Don't let anyone tell you who you are and never give up hope."

In a follow-up documentary to i go home, WITF will release Going Home.  Over 25 on-camera interviews were conducted in producing this one-hour documentary which includes interviews with the people mentioned in this article.  Watch as Gordie embarks on a new life in the community, Jean searches for her son and Daniel delivers the commencement speech at Millersville University.  It's all part of the journey towards inclusion for people with intellectual disability and it's all part of Going Home.

Watch Going Home on November 8th at 8pm on WITF.

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