Pennsylvania legislators propose a moratorium on the closing of two state facilities for people with intellectual disabilities

Residents and families of two Pennsylvania state-operated ICFs/IID will get a reprieve from closure. See blog post on the decision to close White Haven and Polk Centers.

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House Co-Sponsorship Memoranda

House of Representatives

Session of 2019 - 2020 Regular Session

MEMORANDUM

Posted:	September 25, 2019 11:22 AM
From:	Representative Gerald J. Mullery and Rep. Tarah Toohil, Rep. R. Lee James
To:	All House members
Subject:	Moratorium on Closing of White Haven and Polk State Centers

Fear of the unknown can be deeply debilitating and a feeling with which we are all familiar. Today, hundreds of families across this Commonwealth are grappling with the fear of their loved one being forced from the place they have called home for a large portion of their life. For others, they are struggling to find an alternative facility that will match the immense needs of their family member before time runs out. We support the integration of those living with intellectual disabilities into the community where they can thrive and become more independent. But for the residents of the White Haven and Polk State Centers, that is simply not a compassionate option. Many of these individuals require 24/7 attention and extensive medical care morning and night. Closing these facilities forces families to make excruciatingly difficult emotional and financial decisions for individuals whom we have vowed to protect. For some of these residents, the closure and forced exit could be incredibly damaging and traumatic. Before we uproot the lives of these vulnerable Pennsylvanians, we must truly understand the impact the decision may have on the remaining time they have and make readily available the resources to seamlessly continue care. That is why we are taking swift action to introduce legislation that would enact a moratorium on the closing of these facilities until we are better prepared as a state to respond to the impending result. Please join us in supporting this legislation and this critical decision to buy more time for the residents of White Haven and Polk and their families.

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Abelone Kelley September 30, 2019 0

PA Governor announces final decision to close two of four state operated facilities for people with IID without consulting residents, families, or state legislators

Polly on hiatus

After a long hiatus from The DD News Blog, I am picking up where I left off with Susan Jennings' compelling testimony before the federal Interagency Autism Coordinating Committee on July 23, 2019. 

Susan Jennings' severely autistic son suffered for years in abusive community care, often in a toxic over-medicated state, until the Jennings went to court and gained admission for their son to an Intermediate Care Facility for individuals with intellectual disabilities (ICF/IID). White Haven Center in Luzerne County, Pennsylvania, has the right combination of services to control his maladaptive behaviors and a setting that provides close supervision and the safety he needs to thrive. [See "Joey's Journey" for a full account of the ordeal that led to White Haven Center]

Three weeks later,  according to an AP report on August 14, 2019, the Pennsylvania  Department of Human Services (DHS) announced plans to close two of the remaining four state centers for individuals with intellectual disabilities, including Joey's home at White Haven Center: 

"The Department of Human Services said Tuesday that public meetings will be held next month to gather comment on the plans to close the Polk State Center in Venango County in western Pennsylvania and the White Haven State Center in northeastern Pennsylvania's Luzerne County"

The DHS declared that the decision to close these two facilities is final, but also admitted at a legislative hearing on 9/24/19 that the decision was arrived at without consultation with residents, families, facility staff, or legislators. 

The Pennsylvania DHS, according to the AP account, "....promised to work with residents and families, meet with potential community service providers and come up with 'individualized transition plans.' Officials said every Hamburg center [which closed in 2018] staff member who expressed interest in continued work for the state was offered a job prior to closure or in the one-year contractual placement period afterward." 

Residents and families, however, have the option of choosing to continue to receive ICF care if they disagree with the decision to move residents to community placements. This is a holding of the 1999 Supreme Court Olmstead decision that states that a person in institutional care may be moved to community care as long as the affected individual does not oppose treatment in the community. This stipulation is largely ignored by state agencies and advocacy groups who ideologically oppose institutions and tout the overwhelming success of community placements for people with IID. 

According to the Pittsburgh Post Gazette, 8/14/19, Peri Jude Radecic, CEO of Disability Rights Pennsylvania (Pennsylvania's Protection and Advocacy agency) approves of the facility closures and states that, “The Americans with Disabilities Act sought to end the isolation and segregation of persons with disabilities. Court decisions have affirmed the right to move and live in the community. For decades, our Commonwealth has demonstrated that state operated institutions can close and individuals can be moved into the community thoughtfully and safely.”  The Pennsylvania ARC has also expressed enthusiasm for these closures.

For a more accurate interpretation of the ADA according to the 1999 Olmstead decision, VOR has put together passages from Olmstead protecting choice with this introduction:

"...There is no inclusion mandate in Olmstead. Rather, the Court’s determination in Olmstead supports both the right to an inclusive environment and the right to institutional care, based on the need and desires of the individual. Olmstead guarantees choice for all
individuals, their parents, and guardians. Olmstead requires that those who are moved from institutional care to smaller, community-based group homes meet three distinct criteria to determine the appropriate residential setting. There is no mandate to deny access to institutions, to close institutions, nor to place at risk any individuals who need and choose institutional care."

The views of residents and families and others supporting Pennsylvania state facilities are expressed here, on the KIIDS website, ("Keeping Individuals with Intellectual Disabilities Safe...") and at a legislative hearing on "Open the Doors to Dignity" held on April 30, 2019.

The legislative hearing held on 9/24/19 included both support and opposition to the closing of state facilities. Highlights include testimony from John Hirschauer at 1:06 followed by Susan Jennings (White Haven), Irene McCabe (Polk Center), and Hugo Dwyer from VOR from 1:17 to 1:45.

Other interesting moments: 

There were numerous references in the DHS testimony to the amazing success of the closure of Hamburg Center last year. According to a report on the hearing from the Standard-Speaker, Hazelton, PA, 9/25/19, Celia Feinstein from the Institute on Disabilities at Temple University was one of only two witnesses from outside the DHS to testify in support of closure of the state facilities. She said Pennsylvania lags behind other states in moving people out of centers.

"She also said Temple followed people after they left the state Pennhurst Hospital that closed 32 years ago to find out if the move benefited them.

"'After many years of study, I can answer with a resounding 'yes,' Feinstein said. 'In every way we were able to measure it, people are better off.'"

Others were more concerned about the possibility of less than adequate care that residents might receive in community settings and were focused on the fact that of the 80 people moved from Hamburg Center that closed in 2018, 15 have died. 

One rationale given by DHS for not having consulted with residents, families, facility staff, or legislators before deciding to close two centers was that when the DHS floated the idea of closing Hamburg Center, it spooked workers into quitting and leaving residents insufficiently cared for. Apparently it has not dawned on the DHS that this could happen again, now that the centers that they want to close have been identified. To have care deteriorate as a center is closing is a familiar pattern that has been observed before. It has even been used as an impetus to families to move quickly in selecting a community provider, before all the "good ones" are taken.

There are 13,000 people on waiting lists in Pennsylvania for community services. Hugo Dwyer from VOR pointed out that people coming out of state facilities will be first in line to receive Medicaid Waivers to fund community services, thereby putting more strain on the system to serve people in community settings. According to the UCP Case for Inclusion 2019, page 9, although spending doubled on Home and Community based services from 2006 to 2016 and the number of people living in larger state institutions was cut in half, waiting lists for services tripled.

How have people with IID fared in other states when facilities closed?

Michigan closed its last state-operated ICF in 2009. The promise of appropriate care for everyone with a developmental disability in a community setting has not been fulfilled. "Michigan’s mental health system is failing many with severe autism" gives several examples of how people with severe autism who might have been better served in an ICF/IID are falling through the cracks and facing institutionalization in jails and psychiatric hospitals.

Georgia: The Augusta Chronicle has been following the tragic consequences of forcing people with developmental disabilities and mental illness out of institutions and into communities that are not prepared for them and are unable to meet their needs. "Report: Deaths, lack of housing plague Georgia system for disabled, mentally ill" by Tom Corwin, 8/26/19, relates how "An independent reviewer found that despite Georgia’s claims of compliance, a state health care system for the developmentally disabled and mentally ill is still inadequate." 

In 2010, Georgia reached a settlement with the U.S. Department of Justice to move residents of state facilities to community settings. According to the article, 

"An Augusta Chronicle investigation in 2015 found nearly 1,000 deaths among those patients in community care in both 2013 and 2014, and the state has twice halted moving them from state hospitals into community care over the lack of adequate care among those providers. In its last Annual Mortality Review that covered fiscal year 2017, Jones [the independent reviewer] noted that the death rate has continued to climb each year, from 12.5 per 1,000 in fiscal year 2015 to 16.4 per 1,000 in 2017.

“'Perhaps most significantly,' Jones notes, the death rate for those the state has already identified as high risk is anywhere from twice to four times as high."

Washington State: from Because We Care -- Beyond Inclusion 

in a series of Blog posts - "Stuck in the Hospital"

California: "Falling Through Cracks: When The Safety Net for Young Adults With Autism Spectrum Disorder Fails" by Eva Loeffler, 2/25/19

In Pennsylvania, there is bipartisan support from legislators, especially those from the affected counties, to have the state legislature review the decision by DHS to close two of its state-operated centers.

See also full coverage of the PA legislative hearing from the Standard-Speaker from Hazelton, PA:  "Advocates, Opponents Of White Haven Center Closing Head To Harrisburg For Hearing", 9/25/19.

Abelone Kelley September 30, 2019 0

Group Living in Ann Arbor: OK for Young Professionals and Students, but not for Adults with Disabilities???

This is about an article in the Ann Arbor News, “Group-living townhouses with co-working space will target young professionals in Ann Arbor” by Ryan Stanton, 2/23/19. 

You may detect a note of sarcasm on my part, when I describe what is being proposed here in Ann Arbor to much acclaim. If this were proposed by families of adults with intellectual and developmental disabilities, as a housing and service solution for their family members, some advocacy groups would denounce the effort as an attempt to re-institutionalize people with IDD and segregate them from society by providing services where they live targeted to their specific needs. 

Because this project is designed for young professionals, with the idea of helping them save money and share services with other like-minded adults, we are unlikely to hear cries of righteous indignation and accusations that it is just a scheme to oppress and infantilize young professionals. This is a complaint you would inevitably hear if this was built for people with disabilities. I think it would be a fine idea to have an option like this for people with disabilities who prefer group living and can benefit from it.

To be clear, housing people with disabilities was not an issue in this article, and I don't mean to imply that there was any hint of discrimination by the city or developer against any particular group of people. This is just me, struck by the contrast in how we think about non-disabled people just living their lives, and people with disabilities being caught up in controversies over other people wanting to decide for them how they should live.

The Housing Project for Young Professionals:

A developer will build 11 six-bedroom units, that city officials initially assumed was for students used to dorm-like living: 

“This is emphatically not a student housing project,” said developer Heidi Mitchell of Prentice Partners of Ann Arbor.

“It is actually a co-living, co-working space with (shared) vehicles targeted toward young professionals.” 

Here is what is planned:

“The apartments are conceived as three-story walkups, with the first floor being a common area with kitchen/dining and living/gathering spaces, four bedrooms, each with a bathroom, on the second floor, and two bedrooms with a shared bathroom on the third floor.

“‘Each townhome is designed to be a standalone unit, sharing only the exterior areas as collective commons space,’ the plans state, noting there will be a row of five units and a row of six units, with a ‘mews’ design that allows for communal access and gathering between."
...

“Bedrooms will be about 150 square feet, giving each tenant what Mitchell calls their own ‘cocoon suite.’

“Each townhouse will have its own front door access, as well as a second access from the communal area.”

The project is designed to allow people to live without owning their own car and to share workspaces so they can work from home if they want.

“The site is within walking and bicycling distance of downtown, the UM campus, a grocery store, CVS, and other destinations, including a bowling alley and UM athletic facilities, with nearby access to public transit.”

“'Obviously we’re not allowed to say you can’t rent if you’re a student, but I can promise you all of our marketing efforts will be directed toward people who are in the workforce,' she said, calling housing for young professionals 'definitely an area of need in the city.'

“'..all of our marketing efforts will be directed toward people who are in the workforce,' says the developer and not at students. "

Do I detect a whiff of discrimination here, not to mention segregation? Definitely not! This is for normal people choosing to live together who also lead their own lives and find it easier and less expensive when so many of their needs can be met in one place.

But six bedrooms in one townhome??? That sounds suspiciously like a group home, congregate living, an intolerable predicament if the people who were living there were disabled. And there is no doubt about it, 11 town homes in close proximity to each other with six people living together in each unit definitely makes it an institution. 

Oh, the horror! Bring on the Young Professional Self-Advocates who know exactly how every young professional should live and will work tirelessly to stop this project in its tracks! 

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See also, "Saline, Michigan: Families take the initiative in creating new housing for people with DD", The DD News Blog, 2/13/18 

"...Dohn Hoyle thinks the Saline project falls short. Hoyle is the public policy director for the ARC Michigan. Because the condos will have 24-hour care and house only residents with disabilities, Hoyle sees less independence than what’s being marketed…'It will be their own place in the sense of their own condo, but remember what you’ve done is you’ve set up a group-living situation [by] having everybody who lives there have a disability,’ Hoyle said.”

Abelone Kelley March 07, 2019 0

Words Matter: The Language of Disability

The article below is from the November 9, 2018 VOR Weekly News Update by VOR’s Executive Director Hugo Dwyer. VOR, a “Voice Of Reason”, represents families and friends of people with severe and profound intellectual and developmental disabilities (IDD), including people with complex behaviors that put them at risk for seriously harming themselves or others. 

Most of the disabled individuals represented by VOR families and friends require an institutional level of care, whether the care is provided in an actual institution for those with the highest needs or in a community setting often funded by Home and Community-Based Services (HCBS) Medicaid Waivers. 

VOR supports choice from a full array of high quality options based on individual need. Many influential advocacy organizations, such as the ARC, promote “Community for All” and the elimination of institutional and other congregate settings, despite evidence of systemic problems and underfunding of community care. The results of poor quality community care lead to abuse, neglect, exploitation, and isolation, the very characteristics that have arbitrarily been assigned to institutions, regardless of the quality of care and the appropriateness of the setting to meet individual needs. 

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On Language: The "R" Word, the "I" Word, and the Subtext of Discrimination

by Hugo Dwyer

11/9/18

While attending the meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) in Washington D. C. last month, I heard a number of participants mention their strong dislike of the “R” word. The general consensus was that the "R" word is hurtful, that it had been used to insult and marginalize people with intellectual disabilities. One speaker compared using the "R" word to using the "N" word.

We can all agree that the "N" word has always been a term associated with ignorance, racism, and hate. We can all pretty much agree that the "R" word has deviated from its original clinical usage to describe an intellectual condition, mental retardation, to become a derogatory, insulting, and disenfranchising term. As a result, we have stopped using the "R" word.

What struck me was the fact that most of the participants freely used the "I" word, Institution, as a demeaning term, without ever seeing the irony of their using this term in a manner that is hurtful, and disenfranchising to those who believe that Intermediate Care Facilities (ICFs) are the best solutions for a minority of individuals with intellectual and developmental disabilities, complex medical problems, and behavioral disorders.

ICFs are a legitimate, valuable component of our full continuum of care. They deliver a higher level of service for people with higher levels of need. ICFs are certified by CMS, and are thereby held to a much more stringent set of guidelines than HCBS waiver settings.

When members of the I/DD community derogatorily refer to ICFs as "institutions", their intent is often to invoke memories of the past, where people with I/DD were cruelly warehoused without treatment in places like New York's infamous Willowbrook State School or Pennsylvania’s Pennhurst State School and Asylum. Modern day ICF's bear no resemblance to those institutions. The use of the "I" word is just as hurtful, just as demeaning and marginalizing to our families as the use of the "R" word might be to theirs.

The families of people with severe and profound disabilities support the goals of inclusion and competitive employment for those who have the ability to participate in these environments. But we cannot help but feel marginalized and discriminated against by others in our own community, when we hear the word "institutions" used in a demeaning manner, when we are told that equivalent services are available in "the community",. Families who support these choices are often told that we are uninformed, afraid of risk, or that we just don't care enough for our loved ones to put them into waiver settings. That is hurtful. That is demeaning. That marginalizes us.

It's time for us all to acknowledge the breadth of the disability community, and work to support one another in our individual goals of making better lives. Please don't allow others to use the "I" word to demean and marginalize those who make this choice.

Abelone Kelley March 02, 2019 0