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From the Derrick Friday Jan 10 2020 Judith O Etzel

The Polk Center board of trustees has formally notified Gov. Tom Wolf that it believes the proposed closing of Polk Center and White Haven Center in eastern Pennsylvania will have "a significant, negative impact on the people served by these two centers and jeopardizes their health and welfare." The board is an advisory group that reviews issues related to the "health, safety and well-being" of residents at Polk Center, explained Colleen Stuart, chairman of the Polk trustees and author of the letter sent to Wolf last month. While the board has previously publicly expressed its dismay about the pending closure, the letter is the first official correspondence with the governor as to the trustees' opposition to the plan. The letter offers specific and strong rebukes to the pending shutdown of Polk Center. The correspondence was prompted by an abrupt and unexpected announcement Aug. 14 from the Pennsylvania Department of Human Services that Polk Center and White Haven Center would close over the next three years. The decision was based on the positions held by Wolf and the Department of Human Services that developmentally disabled residents should be relocated from institutional settings to community-based living. Polk Center, at latest count, is home to 191 residents. There are 744 employees at Polk Center. Stuart, as chairman, sent an earlier letter to Wolf as well as to the state agency but received no feedback. In the latest letter, written by Stuart and approved by the trustees, the panel lays out its objections to the proposed shutdown of Polk Center. "Moving the people currently served at Polk and White Haven is not safe," wrote Stuart. Describing the residents as "the most medically fragile, clinically and behaviorally complex citizens" in Pennsylvania, the letter said other closures that have moved vulnerable residents show the risk of "unexpected deaths." In addition, there are limited resources outside the centers to offer the level of care shown at the centers, notes the letter. "Many are not advanced enough to safely meet the needs of the people currently served at Polk, placing residents in further jeopardy," said the trustees. The 'impact will last' "Closing two centers at the same time causes immediate and ongoing concerns," insisted the letter. While similar centers have been shut down in Pennsylvania, the edict from the state marks the first time two closures have been tried at the same time. "Closures are complex activities that put significant pressure on area human services and other public entities such as police and hospitals, which could result in unexpected consequences," notes the letter. "This impact will last for years to come, not just for those leaving a center but the community as a whole," Stuart wrote." People will 'languish' "Closing the centers ignores the current and future need for the ICF/ID (Intermediate Care Facilities/Intellectual Disability) level of care," said Stuart. There are hundreds of people with intellectual disabilities in Pennsylvania who are inpatients at psychiatric centers, hospitals, correctional settings and elsewhere "who need the care and treatment available at state centers," wrote the trustees. Those men and women "are entitled to the 'everyday-life' advocated by our Commonwealth," said Stuart. "Without the backup of state center services, these people will languish, sometimes for years, in these restrictive settings while county and state ODP (Office of Developmental Programs) staff negotiate on how and where to serve them," notes the trustees' letter. Input 'purposely excluded' "The Department of Human Services decision process lacked transparency," insisted the trustees. The impact of a closing impacts "the lives of hundreds of families" and the process used to decide the issue failed to be open and transparent, wrote Stuart. "The people served at Polk ... and their families were purposely excluded from this life changing decision while your administration involved individuals, including state officials who had a clear conflict of interest and who should have recused themselves from this process," said the letter. The economic impact of a Polk Center closing will be substantial on area communities and the lack of transparency ignored that factor, notes the letter. Referring to a Sept. 9 hearing in the state House on the closing proposal, the letter said the three minutes of testimony given to each speaker was "grossly inadequate to present these issues that will likely distress the area economy for years to come, said Stuart, faulting Wolf's administration for failing to be more pro-active in its planning for such closures. 'Reconsider this decision' In insisting the closure is ill-conceived, the trustees asked the governor to "reconsider this decision where more sensible alternatives can be considered by those individuals directly affected by this decision." The center closings "run counter" to a state objective that people should be involved in decisions about their lives, said the trustees. On money matters, the trustees asked that discussions as to costs should include "all the funds that are used to support someone in the community and in the center," including services such as food stamps. Arguing that there is "compelling, peer-reviewed research that shows the tragic consequences of closing these facilities," the trustees faulted the Wolf administration for describing any deaths attributed to the closing of Polk Center and White Haven as "unintended consequences of making change." In conclusion, the trustees wrote, "This letter cannot adequately express the chilling effect these words have had on the families of Polk Center residents." Two members dissent Voting to send the letter to Wolf were Stuart and fellow trustees Greg Miller, Kimberly Woods and Joe Lambo. The two other trustees, John Barber of the Erie-based Barber National Institute and Charles Walcazak of the Erie Homes for Children and Adults, voted not to send the letter to Wolf. While Walcazak offered no public comment on his vote, Barber wrote to Stuart that he objected to the letter's contents as well as making it public. The letter, he argued, "assumes facts ... and draws conclusions which are not based upon any evidence" that has been shared with the trustees. Barber also said the trustees serve as an advisory board and so "matters of statewide policy are beyond the purview and expertise of our board." "While I understand that the issue at hand has elicited very strong emotions, the inflammatory nature of the allegations made in the letter and made without any due deliberations or evidentiary presentation are not something I can support," wrote Barber.


Updated: Jan 21, 2020

The National Council on Severe Autism (NCSA) is strongly opposed to your plan to close the Polk and White Haven State Developmental Centers.

The autism spectrum is broad, and we represent the growing number of families whose loved ones are significantly intellectually disabled, with minimal or no language. They often suffer from medical comorbidities, most commonly seizures, sleep disorders, and gastrointestinal problems.

And, most importantly, many of them exhibit extraordinarily dangerous behaviors that pose

grave risks to themselves and/ or their caregivers, including aggression, self-injury, elopement, screaming, property destruction, and pica (a compulsion to eat inedible objects). We understand the Commonwealth's need to be prudent in its allocation of limited resources, and why the Developmental Centers seem like obvious targets. But quite simply, closing DCs only provides the illusion of savings: supporting a population that requires intensive, round-the-clock care will impose costs no matter where they are placed. In closing DCs, prohibiting the building of new congregate settings, and drastically reducing the number of Consolidated Waivers (the only Waiver that pays for residential services) - the Commonwealth is placing a strangehold on viable options for this very challenging population.

The Office of Developmental Programs may report savings, temporarily. But in reality all it is

doing is shifting those costs: to aging parents unqualified to provide the necessary level of care; to siblings, who must give up their work; to law enforcement, whose officers may be called multiple times a week to respond to violent outbursts; to hospitals, where it's become common for severely autistic adults to languish in emergency rooms because of a lack of safe and appropriate placements. Even if that shift is sustainable in the short term, what happens when those placements can no longer manage, or when parents die? With no Developmental Centers to provide the level of care required, our most vulnerable citizens will be forced into grossly inappropriate (yet just as costly, or more so) settings, such as nursing homes or psychiatric wards.

Perhaps you've been told that the law requires the intellectually and developmentally disabled to receive services in their communities. In fact, the Supreme Court's Olmstead decision - touted as an "inclusion mandate" by some disability advocates - explicitly affirms the need for a wide range of residential options to reflect the diverse needs of this population: "We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings ... Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." In his concurring opinion, Justice Anthony Kennedy warned, "It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision." This is exactly what is happening in Pennsylvania right now.

Mindful of such unintended consequences, the Centers for Medicare and Medicaid Services (CMS) issued new guidance in March that removed language focusing on the physical characteristics of settings (such as size) in favor of an emphasis on client outcomes. In short, both legal precedent and federal regulations reject a "one-size-fits-all" model of service provision for the intellectually and developmentally disabled.

The National Council on Severe Autism urges you to reconsider your proposal and preserve

State Developmental Centers for those individuals with intellectual and developmental disabilities who require acute and lifelong care.

We would be happy to meet with you or your staff to discuss this further.

Very truly yours,

Jill Escher


PO Box 26853

San Jose, CA 95159

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