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| 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.
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.
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