Keeping Individuals with Intellectual Disabilities Safe

a grassroots effort

of parents, family & friends

protecting the RIGHTS of our loved ones

to live in the Community THEY need


Pennsylvania State Senate Hearing on Closure of White Haven and Polk Centers

On September 24, 2019 the Pennsylvania State Senate held hearings to investigate the process that led Governor Tom Wolf and Secretary of Human Services Teresa Miller to declare that the White Haven and Polk Centers would be closed and the residents of those two state-operated facilities would be transferred to community centers or sent to the other end of the state to live in the two remaining state-operated ICFs.

VOR's Susan Jennings testified at the hearing, along with VOR member John Hirschauer and VOR's Executive Director Hugo Dwyer. Several other members of VOR were in attendance, as well. The audience was filled with family members of the residents of the two centers, and a large contingent of caregivers who showed their concern for the residents, for their jobs, and for their community.

A full recording of the hearing may be viewed at

While we would encourage our members to view the entire video. Highlights include the testimony of

• James Latronica (5:40 - 10:40)

• Sherri Landis of the ARC (16:15 - 19:30)

• Carl Solano (20:00 - 29:40)

• Q&A of the first panel by Senators (37:00 - 1:05:20)

• VOR's John Hirschauer, Susan Jennings, and Hugo Dwyer (1:06:45 - 1:36:40)

• Staff members, DSPs, and Union Representatives of Polk and White Haven (1:45:00 - 2:04:00)

• Randy Seitz, Chairman of the Penn-Northwest Development Assn. (2:08:00 - 2:14:00)

• Teresa Miller - Secretary of the Dept. of Human Services (and Q&A) (2:18:00 - 3:13:30)

(All times are approximate)

One key takeaway from this hearing was the secrecy with which Teresa Miller and Governor Wolf carried out the act of determining whether or not to close any state-operated ICFs, which facilities they might choose and why, and why they refused to consult with any stake-holders in making this rash decision. No residents, family members, facility administrators, caregivers, union members, or community leaders or chambers of commerce of the affected counties and regions were consulted by Wolf or Miller in this process.  


Pennsylvania's Facility Closures Hurt the Mentally Disabled


September 26, 2019 6:30 AM


Editor’s Note: The following is a transcript of the author’s testimony at a hearing held by the Pennsylvania state senate’s Health and Human Services Committee. The subject of the hearing was the closure of two state-operated institutions for severely disabled adults.

Members of the Committee:

Thank you for the opportunity to testify.

My name is John Hirschauer, and I am a journalist at National Review in Manhattan. My words today are my own.

I have covered state facilities for individuals with intellectual and developmental disabilities on a national level and have worked on behalf of one in the Connecticut state legislature. I still spend much of my weekends volunteering at that facility in my hometown, where I have received the unparalleled gift of interacting with the most profoundly impacted segment of the disability population.

I want to begin my remarks with qualifications that I think are almost too obvious to state but will state anyway, lest I be accused in their absence. First, I, and, I assume, my co-panelists, have no fundamental opposition to people choosing to live in a non-congregated, so-called “community” setting. And for those individuals who have left Polk or White Haven of their own volition, and have found their new arrangements superior, I’m thrilled for them. Sincerely.

Indeed, there is one — and only one — side here today that seeks to impose its preferences on unwitting and unwilling parties. And it’s not ours.

We are here today for one reason. We are not here because the residents of Polk and White Haven State Centers are being mistreated. We are not here because the residents of Polk and White Haven State Centers are unhappy with their care. We are not here because their families are unsatisfied with the services that their loved ones receive. We are not here because residents have been trapped there against their will, or because they are not given frequent, often desperate offers to leave. No; we are here because the Department, in tandem with a coterie of non-profits and academics, want to close down Polk and White Haven State Centers against the stated preferences of the stakeholders served there.

It’s worth pausing to reflect on the tremendous power these triune forces have over the narrative, the narrative that indelibly shapes the way we approach these proposed closures.

When state facilities close, who hosts the closure ceremonies? They do. Who warns us, microphone in hand on the lawns of shuttered facilities, not to be “nostalgic,” to think of these facilities as a blight on our history, an embarrassment to the Commonwealth? They do. Who tells, in sordid detail, of the abuses that occurred years ago, and damn every facility for the shameful events at Pennhurst State School in 1968? They do. When instances of abuse come up in group homes or “community” living arrangements, however, who tells us that we must not take that as representative or indicative of the community system at large? They do.

When the history of “disability policy” is written, who tells a story devoid of nuance, a Manichean tale where congregation is bad per se and that which they conveniently call the “community” is a good unto itself? They do.

And who is it who calls for these places to close in the first place? They do.

But what about the clients at Polk and White Haven State Centers? What about the people who have said they want to stay? What about what they think? Shouldn’t their goals and aspirations matter more than the abstract ideological goals and almost theological aspirations of those who would close their home against their will?

No matter how much families and individuals protest, and no matter how often the Department claims this decision is about “choice,” they know as well as everyone here that to abide by this decision is ultimately to affirm the Department in its fundamental, unavoidably arrogant premise: to assume it knows better than the individuals and families at Polk and White Haven State Centers what is “best” for them.

This is an ideological decision. The panel to follow will admit as much; the social science we have available seems to suggest that, for the most profoundly impacted individuals in the disability community, it might actually be slightly cheaper to deliver care in a campus setting than in isolated, dispersed care homes. Their closure literature says as much: Do not focus on cost, they say. This is about, in their words, “civil rights.”

I interviewed the Department for a story I’m writing for our publication, the transcript of which you’ll find in the documents I’ve added to my testimony. I asked them plainly: “Would closure be the right thing to do even if the overwhelming majority of residents and their loved ones opposed it?” The roundabout, implied answer? Yes.

The Department stressed to me that this decision was about “choice” for residents and their families — who, it bears remembering, are being displaced from Polk and White Haven against their will; who, it bears remembering, have been assiduously and aggressively given every offer and opportunity to leave if they no longer want to live there; who, it bears remembering, are by necessity among the most profoundly impacted members of the disability population.

The Department told me that residents could “choose” one of the state’s two remaining public ICFs [intermediate-care facilities]. I asked the Department, plainly, whether those centers would inevitably be subject to the same closure efforts.

Secretary Miller — and I must say, I appreciate her honesty — said, “I mean that’s certainly an option. That’s certainly a potential future.”

Is that, in any meaningful sense, a “choice?” No. It’s a dogmatic pronouncement; a religious faith, the sort that seeks to convert by force, to impose itself on people, regardless of their expressed preferences to the contrary. Because, indeed, if the facilities to which these residents move will be subject to this same unpopular ideological action a mere few years hence, what type of “choice” is the Department offering? It is no choice at all. To call it such insults everyone involved, supporters and opponents of this action alike. Let’s call this what it is: the preferences of the Department, the preferences of academics, the preferences of non-profits, working toward that paradisiacal day when no one will live in congregation with his peers; indeed, the preferences of people utterly removed from the actual families who live, and work, and play, and thrive at the state centers finally and completely usurping the preferences of the residents and families themselves.

They’ve closed admissions. They’ve shut down facilities by executive order. And they have the audacity to claim that the declining census, a census whose decline is of their making, is evidence that these settings are no longer necessary.

So that’s the choice you have. On the one hand, you have the preference of non-profits, who cannot abide the thought that some person with a disability, somewhere in the state of Pennsylvania, lives in brick buildings rather than at the bottom of a lonely cul de sac, the preference of those eager for a symbolic victory, desperate to add a brick from the Polk and White Haven administrative buildings to their morbid collection of trophies, who, to quote Edward Whalen, “are mesmerized by the mystique that all institutions are bad, that the buildings should be razed, the earth bulldozed over and then salt poured on the grounds so it will never rise again.”

What will they say in response?

They will express a hollow sympathy for those residents at Polk and White Haven who have expressed a desire to remain, but will insist that “it can only be expected; they don’t know any other way of life.” And when they say that, I want you to think: Has this standard ever been applied in reverse? When residents in a group home, in an independent apartment, or in some alternative habilitative arrangement express satisfaction with their services, do we tell them, “It can only be expected; you don’t know any other way of life”? Do we insist that they have to, against their will and enforced by state armament, leave their current living arrangements, ones with which the have verbally expressed their satisfaction, and live in a congregate setting like White Haven or Polk State Center, and then, and only then, take them at their word that they preferred the group home in the first place?

Of course not.

Why is it that we’re told, time and again, by the various non-profits, academics, department officials, and legislators, that we need people with disabilities to be self-advocates, that we should trust their voices, and when those that can open their mouths do so, and tell us what they want, we refuse to accept it?

The panel to follow will also tell you that, while they “understand” that “change is scary,” ultimately most parents and individuals are “happy” after they move. But most of the parents and individuals are “happy” now! And if they’re not, they are given every opportunity to leave! Indeed, this canard comes up time and again. When families and individuals express their overwhelming preference for a state center, it’s demeaned as illogical risk aversion, a pathological “fear of change.” But when a majority of families and individuals subsequently express their satisfaction with private, dispersed care homes in the “community,” this is treated as prima facie sanction to close a state center! When they tell you that many families are satisfied with services in the community — and indeed, I applaud those that are — remember that, in 2011, a survey sanctioned by the Protection and Advocacy Organization — no friend to these facilities and the choices of their residents, as you know — taken in fall of 2011, found that 97.2 percent of the 1,013 families surveyed did not want to move their loved one from the state center where he or she currently lived, and of the 307 residents capable of responding, 271 said they wanted to stay.

You can’t have it both ways. Family preferences matter, or they don’t.

They’ll cite their social science conducted by their social scientists, and will cite, no doubt, their favorite study, that found, to no one’s surprise, that the residents who left the notorious Pennhurst State School fared better in the community. That comparison is valid only if you presume that Polk and White Haven are like Pennhurst, which I think is a calumny.

And speaking of calumny: The Department said this decision was done to “recognize the worth and inherent dignity of the residents at Polk and White Haven State Centers.” If you think about this remarkable statement for two seconds, you’ll realize what a backhanded indictment this is of the individuals and families who choose Polk and White Haven of their own volition. Do the over 300 families at the centers not “recognize the worth and inherent dignity” of their loved ones, or do the residents not recognize it in themselves? It’s a cheap smear dressed in the language of compassion, which, indeed, is a fairly apt description of this decision in toto.

What’s the reality? The reality is this: Some of the most profoundly and grievously impacted members of the disability community reside in the state centers. One Polk resident laments: “I’m going to kill myself.” Another goes to the administration building every day and cries, because he is being forced to move. This cannot be explained away with paternalistic explanations about how it is “all they’ve ever known.” This is their home. They live with their friends. And non-profits with a vested interest in one specific residential-service model, adhering to an ideological framework that trickles through academia, that somehow, because a person lives in congregation with his peers, and lives in a small town, his home is unfit to exist, and needs to be closed against the will of families and individuals served there. One size does not fit all. The most behaviorally and medically impacted individuals in the disability community rely on the safety net provided here. Do not take it away in haste, no matter how badly the panel to follow wants to host another closure ceremony. Thank you.

JOHN HIRSCHAUER is a William F. Buckley Jr. Fellow in Political Journalism at National Review Institute. @johnhirschauer

Testimony before the federal Interagency Autism Coordinating Committee during July 23, 2019 Autism Housing Workshop

Here is the Webcast . It is over 5 hours long. My testimony appears at 1:33 to 1:42

Written Testimony


Testimony from parents, friends, experts and advocates on the vital need for a full continuum of residential services for the developmentally disabled before the Pennsylvania House of Representatives Human Services Committee on April 30, 2019

Powerpoint Presentations at Open the Doors to Dignity Hearing


Making the Case for a full continuum of residential services for the severely disabled

April 30 Hearing before the Pennsylvania Human Services Committee in the Pennsylvania House of Representatives

Hearing Testimony of the Speakers


Apr 30

Founding Member of KIIDS - Keeping Individuals with Intellectual Disabilities Safe, Board Member and Pennsylvania State Representative of VOR, A Voice of Reason

Kennedy -Krieger Institute

Apr 30

Psychiatrist and Medical Director of the Neurobehavioral Unit of the Kennedy Krieger

Institute in Baltimore, Maryland,


Apr 30

President, EASI Foundation: Ending Aggression and Self-Injury in the Developmentally

Disabled, and founding board member of the National Council on Severe Autism

[email protected]


Apr 30

Executive Director of VOR, A Voice of Reason, a national organization advocating for a full continuum of residential services for the profoundly and severely disabled


Oct 10

Past President of the Autism Society of America

White Haven Center

Apr 30

President of the White Haven Center Friends and Family Association

Polk Center

Apr 30

President of Polk Center Friends and Family Association

Selinsgrove Center

Apr 30

KIIDS Selinsgrove Center Representative

Ebensburg Center

Apr 30

President of ACE, Ebensburg Center

White Haven Center

Apr 30

KIIDS White Haven Center Representative

$196 Million Increase in Community Group Home Budget decreases Waiting List by only 39 people!

Last Year's state budget took $5 million away from the state centers. The State Center budget went from $137.8 Million to $132.8 Million. At the same time the Community Waiver program increased by $196 Million, from $1.332 Billion to $1.528 Billion. The increase in the funding for the Community Waiver Program exceeded the entire State Center budget (2016-2017 budget) by $58 million.  

The totals from the PUNS dated July 31, 2017/data extraction 8/15/2017:

Underserved: 6,371 Un-served: 7,217 Grand Total: 13,588

The totals from the PUNS dated March 31, 2018/data extraction 4/19/2018:

Underserved: 6,360 Unserved: 7,189 Grand Total: 13,549

So a $196 Million increase in the Community Waiver Program Budget decreased the waiting list by 39 people.

Open Letter to the Commonwealth of Pennsylvania

Re: Editorial – Open Letter in Defense of Opening the Doors to the State Developmental Centers for Pennsylvania Citizens

This is an open letter to citizens of the Commonwealth, our elected leaders, leaders of faith communities, leaders of the medical community and members of the media. My interest in writing is because of our son Joey, age 27, and because in the coming years, there will be a flood of autistic young adults leaving high school, who will be denied critically needed services as adults because of an outdated, unrealistic “deinstitutionalization" ideology.

In July of 2016, at 25 years of age, the youngest of our four children, was admitted to White Haven State Developmental Center, a state- owned and operated licensed intermediate care facility (ICF) offering residential treatment services for individuals unable to care for themselves and whose care is beyond the capacities of their families. There was no question that Joey was eligible for admission. His diagnosis of intellectual disability, autism, and co-morbid psychiatric disorders, our family's struggle to maintain his health and safety at home and his discharge from 3 different community group home systems and 5 different psychiatric wards in the space of only three years made him eligible.

To gain admission for our son at White Haven State Center, we were directed by Joey’s social worker to the Pennsylvania Court system. Joey's admission was opposed by the Commonwealth's Office of Developmental Programs, (ODP), which has a policy of "Closed Admissions" to the State's four ICF programs. Being forced as a matter of policy to go through the court system to gain admission to the services Joey desperately needed cost us thousands of dollars and worry and heartache as Joey languished in the wrong environments, exposed to harm, while battling for a court resolution. This kind of cost would be out of reach for many parents.

The policy of “Closed Admissions” was adopted without legislative or public participation. Until our son's severe unmet care needs drove us to seek help, were unaware of the policy - or even the ICF programs. This policy violates the rights of families to make the ICFMR choice of care by making the choice nearly impossible to achieve. This policy also violates the Supreme Court Olmstead tenet, as written by Justice Ruth Ginsberg that, “Each disabled Person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis that setting may be an institution.“

The policy of “Closed Admissions” is not the only ODP policy which does not reflect the realities of our son with severe autism, who requires eyes - on close care, and others who have slight or no awareness of danger or who are medically fragile individuals with lifelong profound cognitive deficits.

The State agency charged with the health and safety of the Commonwealth's at-risk citizens is implementing policies aimed to weaken and dismantle the public ICF programs. The ODP mission is to downsize, consolidate and close our state's facilities for people who cannot care for themselves. Hamburg Center has already been recently dismantled over the objections of the families/guardians and at the very worst time for our disabled population. The waiting list for services grows ever longer (over 13,000) and a whole new generation of autistic young adults with severe behavioral challenges are left to languish in psychiatric wards and even in jails because they have no appropriate place to go and are denied the choice of ICF care.

I ask for your help for our at-risk family members with disabilities. Please join with me in preserving the option of state-operated ICF programs – White Haven State Center, Ebensburg State Center, Selinsgrove State Center, and Polk State Center.

For more information, please visit for Pennsylvania citizens or a nationwide organization battling for the full choice of care for the disabled, VOR (a Voice of Reason) at


Susan Jennings

KIIDS – Keeping Individuals with Intellectual Disabilities Safe

Mansfield, Pennsylvania

Mother/Co-guardian of Joey, White Haven State Center


“Today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before.” Recent investigations of group homes in New York, Chicago and Philadelphia found rampant abuse and neglect in small, dispersed settings that, as Mandell reports, “often are not up for the task of caring for individuals with more profound impairments.” 

Dr. David Mandell ScD., Director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania


10,123 Signatures as of August 24, 2018 and more to come!



Parents and relatives relay the struggles dealing with aggressive, self-injurious behaviors of their loved ones with autism

Authored by Amy Fisher Lutz 

"Couldn't be prouder to be part of this amazing coalition taking the fight for choice to CMS (Centers for Medicare and Medicaid Services). Did you know that the intellectually and developmentally disabled are the ONLY population in this country denied the civil right to choose where and with whom they live?"

"As a member of the House Energy and Commerce Committee, please know that I stand ready to work with you to ensure the HCBS final rule promotes greater choice for individuals with disabilities so that they can reside in the setting that best meets their individual needs."

"In recent years, several cases brought by the Civil Rights Division, specifically the Special Litigation Section, have blatantly disregarded the choice requirements set forth in Olmstead v. L. C., 527 U.S. 581 (1999)."

To move these aged, medically needy people from the only home they have ever known (the Pennsylvania State Centers), from where they have grown up and lived most of their lives would be a travesty. The transfer trauma of a healthy geriatric person is high; therefore, many of our residents would be receiving a death sentence, and the survivors would spend their last days of their life broken-hearted, missing their lifelong roommates and their caregivers, who have become their family.”

Mr. David Peters,  Nurse and SEIU Hamburg Chapter President, Feb. 3, 2017

Public comments from Kennedy Krieger Institute psychiatrist Dr. Lee Wachtel to the IACC (Interagency Autism Coordination Committee - a federal advisory committee on autism)

Second, the IACC  (Interagency Autism Coordinating Committee) must promote a CHOICE BASED APPROACH to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population. 

January 17, 2018


Click Image for Video

Take a Virtual Tour of a PA State Center

Take a tour of campus living at White Haven State Center and see for yourself all the amenities, campus facilities and the high quality of life White Haven provides for the residents! 


Keeping Individuals with Intellectual Disabilities Safe

a grassroots effort

of parents, family & friends

protecting the RIGHTS of our loved ones

to live in the Community THEY need

We at KIIDS (Keeping Individuals with Intellectual Disabilities Safe) are the parents, family and friends of individuals with intellectual disabilities and dual diagnosis, including autism, living in the Pennsylvania State Developmental Centers.

There are four levels of Disability: Mild, Moderate, Severe and Profound.  


High functioning, Mildly and moderately ID individuals can live safely and well in a community group home, but not everyone can.  The developmentally disabled are a diverse group of people and need a diverse range of services from which to choose to meet their needs.

Our folks are severely and profoundly disabled, medically fragile and/or behaviorally challenged and their needs are complex.

We advocate for the RIGHTS of our loved ones and for all Pennsylvania citizens to be able to CHOOSE the appropriate quality Intermediate Care Facilities that THEY need for their medically and behaviorally challenging and complex disabilities that require intensive support.

Disabled citizens are entitled by federal law to appropriate and safe levels of care 24/7. Dually diagnosed individuals present the severest challenge to care providers. This is the exact population that the Pennsylvania State Developmental Centers specialize in. Along with mental impairment, residents are also medically fragile, behaviorally challenged or all three. The behaviorally challenged is a particularly hard clientele for community providers to handle safely. It is where over-medication, abuse and a shifting burden to local emergency responders can often be found. Quality of life and quantity of activity actually drops from what the State Centers provide. It is important to keep Pennsylvania’s State Centers open and funded. 

The State Centers work when Community Group Homes fail. Centers have a therapeutic value.  When multiple forms of care are provided in the same building, professionals and caregivers, work together to solve medical and behavioral crises quickly and safely.

Generations of justly compensated caregivers have a combined knowledge, experience and intuition that provides a "PERFECT STORM OF CARING" for our severely disabled family members.


IT IS JUST TOO EXPENSIVE TO TRY TO DUPLICATE THIS PROFESSIONAL ENVIRONMENT IN COMMUNITY GROUP HOMES.  The compassionate people of Pennsylvania set aside the State Developmental Centers to serve the people who need them.

But now House Bill #1650 is being proposed to eliminate all Pennsylvania's State Centers, threaten the homes of our loved ones and take away the only meaningful community they have.  Please help us say NO to HB #1650.


-Attorney William Choslovsky

The State Centers Work, When the Community Group Homes Fail

Not everyone can live safely in a community group home, there needs to be more than one type of residential model.  Give every developmentally disabled individual a choice and a range of services and living arrangements.

Joey is a young man with dual diagnosis, autism and intellectual disabilities.  He suffered for 4 years in the Community Group Home Service System, tossed into five different psychiatric wards by three different community group homes businesses unequipped to handle his complex needs, who would then discharge him from their care.   Finally Joey won court battles all the way to the Commonwealth Appeals Court to gain admission to appropriate care in White Haven State Center. Click on his picture to see more details of his journey.

No one should ever have to suffer like he did. No one.

Now his life, his choices, his home and his future are threatened by HB #1650.

Jimmy, Pictures of a Lifetime

It is with great sadness that we must report that Jimmy passed away on December 26, 2017.

But he died in White Haven Center, the home he loved surrounded by the family and people he loved.

Many of the residents of State Centers are elderly and medically fragile.  Jimmy has been a resident of White Haven State Center for 52 years.  He has the intellectual capability of a 16 month old.  He cannot verbally express pain or even blow his own nose.

Over the past 52 years, he had a life at White Haven Center that is far superior to what is available to him and others with similar disabilities in the community.  Until he had his stroke, he had the freedom to walk the Center grounds which are quiet and safe from traffic.  

Jimmy as well as other residents participate in frequent trips to restaurants, shopping centers, entertainment venues, the local Lions Club chapter events and religious services.

Over the years as Jimmy ages his health has declined and in addition to his profound intellectual and seizure disorders, he developed a menu of  geriatric illnesses including arthritis, osteopenia, enlarged prostrate, edema in the legs, hydrocephalus, kidney stones, heart failure and shrinkage in one eyeball.  The stroke he suffered necessitates a mechanical lift to move him from his bed to a wheelchair and specialized equipment for bathing.

Now, more than ever, Jimmy needs the 24 hours per day, seven days a week, excellent on-site nursing services, the staff who understand his non-verbal communication, and the companionship of his peers he has come to know and love over the past 52 years at White Haven State Center.

See Letter to Representative Benninghoff

What the experts say

... large instit​utions are, in most instances, less expensive than community residences for these challenging populations.

- Schalock and Fredericks

Petition to Stop HB #1650

Please download, print, sign

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