From Ginny

I wanted to share my letter to Governor Wolf, it's a lengthy letter, there was so much I wanted to say. And it's heartfelt - I really am a strong supporter of both Governor Wolf and Lt Governor Fetterman, I believe they want to do the best for us, i just don't believe the Governor is getting an accurate assessment of this issue. Praying that a more truthful view of need for Polk and White Haven Centers will be shown to him. December 7, 2019 The Honorable Tom Wolf Governor of the Commonwealth of Pennsylvania 508 Main Capitol Building Harrisburg, PA 17120 Let me begin by saying I am a huge fan of you, your administration, and your work. I find myself always aligned with your positions and count myself among your ardent supporters. So, when I recently discovered that we are diametrically opposed on a critical topic – the closure of Polk and White Haven Centers – I was shocked. My first step was to confirm what I was told, and I found that confirmation in your recent letter where you state that “Researchers have concluded after many decades of study that individuals are happier and experience a higher quality of life and more opportunities in community-based settings.” Governor, with all due respect, I have one very important question for you: “What if you’re wrong? What if you’re dead wrong?” What if the research you are being fed by overpaid lobbyists and researchers studying a 40-year old solution are giving you bad guidance? What if people die as a result of that mistake? With all my heart I believe in your goodness, and I ask you to see a more complete picture of this circumstance than the simplistic answer you’ve heard. The research you cite is deeply flawed. These studies do not stratify the populations based upon their needs. The early transition from institutions to community settings purposely focused on those who were most likely to succeed – higher functioning, higher level of independence, manageable behavioral challenges. These individuals DID NOT belong in state centers to begin with. They do fit well into the community and they thrive and are happy because community centers are an appropriate environment for them. Community homes with 1-2 caregivers provide sufficient support for these individuals, they require minimal healthcare supports, and all usually goes well. I applaud this transition to community settings and am grateful for all of those who fought for the rights of individuals who are able to live in these settings. But look more closely at those who remain in state centers. Their average age is over 60. This is the age where many citizens in the general population are downsizing from their family homes and moving into community settings that offer shared services and on-site medical care – like the state centers. When seniors have a choice today, they are choosing community living for these and many other reasons. The claim is that group homes give people choices about where they live but why is the state depriving our residents of Polk and White Have of living in the setting of their choice? Those who remain in the state centers often have very complex medical needs that are complicated by aging. The state centers provide on-site clinical, pharmacy and nutritional support to handle their complex healthcare regimens. I know you are well aware of the staffing shortages in the community centers, and the low wages – McDonald’s pays more. Surely you understand that the placing of vulnerable individuals with complex treatment plans into understaffed community settings and into the hands of unskilled, and underpaid, caregivers is a nightmare waiting to happen. What happens when those with complex conditions are placed in these settings? Ray happens. Ray lived for decades at Polk – a sweet, gentle giant, who did everything very slowly. Ray demanded patience and his Polk caregivers accommodated him, especially at dinner. He loved to eat but was so darn slow. When Ray was moved to a community placement, the home was understaffed and moved patients with less people than was appropriate. As a consequence, Ray was dropped from the Hoyer Lift. He was hospitalized for weeks then moved to another group home which was not reviewed as part of his transition from Polk. The next time our Polk staff saw Ray, all of his teeth had been pulled and he had a feeding tube in place. There was no reason for this to happen. Ray’s teeth were fine, and enjoying his meals was an important part of his day. Governor Wolf, that’s how a profit-driven group home solves a productivity problem like Ray. Many of those in the state centers have very limited abilities. Many have a mental age of 2-3 years old; they are basically toddlers. They cannot advocate for themselves and many of them no longer have family. If there is not an agency, like the state, willing to take responsibility for their health and safety, then they are at the mercy of the individuals in charge of their care – the for-profit group homes who make decisions based not on what is best for the individual, but what is best for their bottom line. Additionally, to claim that the best environment for these individuals is a community setting with unlocked doors is irresponsible. I believe it is criminal negligence to propose such a thing. You’ve lived with toddlers, so I don’t need to belabor this point. The final complication with those who remain in state centers is the complex behavioral challenges that can often be violent. Many of those in the state centers are court-ordered placements arising from assaults or other violent behaviors. The staff at state centers are well trained to handle behavioral challenges and know how to de-escalate the situation and how to protect themselves and other residents. Residents with violent behaviors have special accommodations that cannot easily be met in a community home. Moving these individuals into group homes can be disastrous –staff have been injured and even killed, fellow residents and neighbors have been assaulted - these cases are well-documented. Protocol In a group home is to call the police. The individual is arrested. Do we really want our state to be known for sending individuals with intellectual disabilities to prison? One of our friend’s 60+ year-old brother with intellectual disabilities was arrested for resisting staff as they put on his seat belt. The community home called the police and pressed charges. His brother has been in prison for nearly a year. This is a real problem, a well-documented problem. The media stories of group home abuse and neglect of developmentally disabled residents are so well documented that they triggered an OIG series of audits that found that, “these residents often experienced serious injuries and medical conditions that resulted in emergency room visits. OIG also found that up to 99 percent of these critical incidents were not reported to the appropriate law enforcement or state agencies, as required.” The OIG report can be found here: [https://oig.hhs.gov/reports-and-publications/featured-topics/group-homes/group-homes-joint-report.pdf](https://oig.hhs.gov/reports-and-publications/featured-topics/group-homes/group-homes-joint-report.pdf) Governor Wolf, I, like my colleagues, are not high paid executives of the advocacy organizations like The ARC whose CEO makes over $600,000 per year. We do not have a budget like their lobbying budget in the millions of dollars. We are a grass roots, hard working group of family members who have earned our PhD’s in caring for those with intellectual disabilities by living it every day. The complexity of the care for our loved ones is so much more complicated than the academic studies describe. We are just asking for two things; be thoughtful, and be thorough. Accept the moratorium as an opportunity to look at this issue more fully. Visit Polk, visit White Haven. Meet our loved ones – Gary, Sharon, Carol, Joey, …. Walk in our shoes and understand our concerns. After you do that, then make your decision. If you do choose to move forward with the closures, I have only one last request. Step up to the plate and accept the responsibility for any damages the closures cause to our loved ones. Agree that those who authorize the transition of any resident from Polk or White Haven will be fully alerted of the possible risks and agree to hold them personally liable – both civilly and criminally - for any harms that our dearest loved ones’ experience. That’s the right thing to do. Thank you for your kind consideration. Virginia (Ginny) Flavin Pribanic