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“Why Screening for Diabetes is Important (Especially if You Take Psychiatric Medications) “



Corridor (Photo credit: Merlin1487)


Article Link


This March 25, 2014 NAMI Blog post talks about the importance of people who take psychiatric medication needing to be screened for Diabetes.





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“NAMI Wilkes-Barre Observes Mental Health Awareness Week Oct. 6-12, 2013”

Article Link

This October 1, 2013 article on the PA Homepage website talks about NAMI Wilkes-Barre plans for observing Mental Health Awareness week this week.

“Erie Runner Going the Distance for NAMI”

Article/Video Link

This July 25, 2013 article on the WICU – WSEE Channel 12 news website out of Erie, PA, talks about Tom Jennings fundraising efforts combining his passion for running with his wish to help those with mental illnesses and their families. There is a link at the end of the article where people who would like to give to this cause can do so.

“We’ve been in the dark too long on mental illness”

Article Link

This February 9, 2013 article on the TribLive website, talks about some of the issues with stigma surrounding mental illness and talks about some of the supports that might be available to folks looking to help a family member.


” NAMI office closing Mental health support agency cites lack of funds”

Article Link

This January 28, 2013 article on the tribdem.com website talks about the decision made to close the NAMI office in Cambria county.  Lack of funding is cited as the reason for closing despite their fundraising efforts.

Someone asked me to cite the link for this article, so here’s my attempt at citation which isn’t a strong point for getting everything in to it that should be in a citation, but it should be enough to be helpful I usually have to look up citation but in this case I went off the top of my head so I apologize if I missed something, but I believe I got the core components in place 🙂


Lavis,  Tom, The Tribune Democrat, January 28, 2013, URL  http://tribune-democrat.com/local/x2056598010/NAMI-office-closing

“Our View: Let’s highlight Erie’s mental health resources”

Panorama of downtown Erie in 1912, looking Wes...

Panorama of downtown Erie in 1912, looking West along the 15th Street tracks. The tallest steeple to the north of the tracks is St. Peter Cathedral (Photo credit: Wikipedia)

Article Link

This January 8, 2013 article on GoErie.com talks about resources available in Erie, PA to help folks with mental health issues.

Busy week

Couldn’t decide what to title this, but I felt that with everything that went on last week, I needed to write about at least some of it.  I attended the local and regional CSP meetings, along with a housing meeting, all this while recovering from a badly bruised elbow, which is doing much better at this point for those who know who I am, my hand and arm are feeling almost “normal”.  I got hit with some sort of bug over the weekend, so I’m a little under the weather as I write this I am keeping my box of kleenex within arm’s reach at all times and sleeping when I feel the need to.  today is better then yesterday though, so that’s getting better as well… I was actually awake most of the day unlike Saturday and Sunday where I slept most of the day and didn’t move unless I had to because moving caused me to cough a lung up.  At any rate, it seems it’s been one thing after another, and I’m hoping that the upswing I started today continues, especially since I need to go do some C/FST related work on Wednesday this week.

So, back to the meetings I attended last week ….

Local CSP ….
 Those present at the meeting were again encouraged to attend the Service Area Planning  (SAP) meeting coming up on Friday the 15th from 1:00 to 3:00 in the Warren State Hospital gymnasium.  most of the people at the local CSP meeting were Consumers, but there were a handfull of Professionals as well.  The person leading the meeting put me on the spot and asked me to explain a little about what a C/FST does and what my purpose is.  Since I’m very new to the idea myself, and was far from prepared to speak, I floundered a lot, but I think I got the basic concept out stating that my job is to find out what Consumers and Family members think about the services they receive and any obstacles that might be preventing them from fully accessing services.  I went a little more in depth then that, but that’s the nutshell description.  After my little fumbling explenation, the table was then shifted to a survey of a different kind.  The person running the meeting, had a survey that she needed input from Consumers so she did a group survey by presenting the various questions to the group.  Questions covered topics such as needed supports (i.e. safe housing, transportation to appointments, lack of MA providers for physical health, more funding for ICM’s to ease the caseload, daily living skills, assistance transitioning from the state hospital to the community…etc.).  I don’t recall specifics of what was discussed, but I know the frustration of not having local Medical Doctors who accept the access card was a huge issue that was brought up and discussed at length, because it also has an effect on the transdportation issue, or maybe it would be better to say the two go hand in hand since if we had local doctors who accepted MA, transportation wouldn’t be as big of an issue.

Housing Meeting ….
We discussed target groups and possible ideas on how to assist them in Warren County.  We also discussed ideas for alternative type housing, such as fairwether lodges or other evidence based housing options, but we decided we need to find out if there are other evidence based housing options beyond fairweather lodges, so yours truely got asked to dig around online to see what I can find … so far most of what I have found is links to sites based in the UK so progress is slow not to mention I was sleeping most of saturday and sunday, so I didn’t accomplish much on either of those days, but need to buckle down and get back on track here I can’t stop the world because I can’t breathe through my nose and my head feels like it’s going to explode if I squeaze it too hard, so plug on I must.  I’m going to eventually add a page relating to housing as I get a better feel for what I’m doing with this group since I learn best by researching and then creating some sort of reference point for myself, but I like to share what I learn, so that’s why you get to have all my links available to you 🙂

Western Region CSP (WRCSP) …..
Let’s see … how to sum this one up, I always learn so much when I go to this that it’s tough to decide where to start.  I guess I’ll start with the workgroup I sat in on, which was the Anti-stigma workgroup.  We discussed experiences had by some when going to the emergency room or medical doctor for a clearly medical problem.  Some had positive experiences with nothing to say indicating they had ever ran into trouble, but many of us in the group shared the frustration of being told we were “faking it”, “Pill seeking”, “attention seeking” or any of a number of issues where the provider assumed that since we were Consumers, we weren’t there for a legitimate medical reason and therefore wasting the doctor’s time.  One person described a situation where she was told to go home becaus the doctor didn’t believe she was in any pain … it turned out she had kidney stones.  Another person described a situation where she had dental work and was having a bad reaction to medication that was ordered as part of the treatment for her dental work, only to end up with the ER counting the pills, and disposing of them and then ordering something that didn’t help at all.  In either case the people who described the situations felt that had they not carried the label of Consumer or mentally ill, they probably would have been taken more seriously and not treated with such disregard.  We discussed the possibility of creating a brochure that could be given to hospitals raising awareness about mental illness both for the treatment of patients who enter the hospital, and also for those working in hospitals explaining what having a mental illness and working means to a Consumer and how to reduce the stigma surrounding having a mental illness.  The group decided that for many, being arrested and ending up in jail offered bragging rights, while having a mental illness and not being in trouble with the law meant shame, isolation, stigma and stereotypes placed on us by society and the media.  Our first project is to work on a brochure to educate law enforcement about mental illness and ask for more dignified treatment of mental health consumers by law enforcement (i.e. when transporting a non-violant Consumer do they really need to be humilliated by being handcuffed as though they were a criminal when going from a local hospital to a state hospital for example?).  Needless to say we live in an imperfect world, but it seems that those in the anti-stigma workgroup want to try and improve the world they live in, I know I do, and maybe today it’s brochures … tomorrow, maybe it will be going and talking to different places to further educate them about Mental Illness and the stigmas faced by those with a diagnosis.

NAMISWPA gave an update on Housebill 1448 which seems to be stuck in appropriations, we need to encourage our representatives to vote yes to this bill, but first we need to get it up for consideration on the house floor.  Dan Frankel initiated the bill with the support of quite a few other representatives, and HB1448 if passed into law will create a non-lapsing trustfun from any money gained by the state from the sale or lease of property currently used by state run MH/MR facilities.  This trust fund would be used to help fund Community mental Health services to ensure that community mental health systems aren’t strained by an influx of Consumers from State facilities allowing the communities to have proper supports in place for these folks at the time of their discharge, instead of waiting until the person is discharged and then throwing our hands up as we try and figure out how to fund the services they need in order to integrate into the community.  HB1448 is a timely bill, with the closuree of Mayview on the horizon, and the possibility of other state MH/MR facilities closing in the future.

OMHSAS reported that there are actually 2 Service Area Planning Meetings on February 15th.  Warren State’s SAP is from 1 to 3 and I think it was Mayview that is the same day from 1 to 3:30 Please, if I got this wrong, let me know, because I can’t remember which state hospital had their SAP scheduled the same day as Warren I’m thinking it was either Mayview or Torrance, but I’m not positive  Those 2 stand out in my mind for some reason though.

Well, I think if I make this any longer people will quit reading if they haven’t already, so I’m going to end here, but I have another post inline already so I’m going to do a shorter more traditional post for it.

“State of PA’s Mental Health Care” May 2006

  This article was published in May 2006, and offers some views on NAMI’s “Grading the States’ specifically a response on the “D+” grade that Pennsylvania received compared to the national score of “D”.  It’s a little dated, but still I found it interesting to see some of the different views presented in the article.

The orignal artical was found on the following website …. http://physiciansnews.com/cover/506.html

Last month the National Alliance on Mental Illness (NAMI) released the first comprehensive report on state mental health care in over 15 years. Grading the States: A Report on America’s Health Care System for Serious Mental Illnesses gave the nation a D, and Pennsylvania a D+.

According to NAMI Pennsylvania Executive Director Jim Jordan, the purpose of the report was to provide a long overdue analysis comparing states’ mental health systems that the organization could use to make suggestions for improving areas of deficiency. The report, he stresses, is not intended to be an attack on political parties, or state or local governments, but rather a unique opportunity for consumers, family members, advocates and the state mental health authorities (SMHAs) to come together and identify both strengths and weaknesses in a three-tiered system of state hospitals, county-level services and non-profit, community-based providers, supplemented by private services, in a uniquely diverse state of two large urban centers and the nation’s largest rural population.

The study analyzed each state’s system relative to three previous reports: the U.S. Surgeon General’s 1999 Report on Mental Health, the President’s New Freedom Commission on Mental Health’s 2003 Achieving the Promise: Transforming the Mental Healthcare in America and the Institute of Medicine’s 2005 Improving the Quality of Health Care for Mental and Substance Abuse Conditions. These reports were the basis for the 39 criteria representing infrastructure, information access, services and recovery supports.

Those criteria were used to score the data Grading the States received from four sources representing the diverse participation Jordan highlighted. SMHAs completed a self-reported questionnaire; scorers evaluated public information including state agency reports and media articles, and interviewed consumer and family advocates; and recipients of services and their relations participated in a Consumer and Family Test Drive (CFTD) that rated the ease with which a user could access information either via telephone or a SMHA’s website.

Despite a D+ grade, NAMI identified as praiseworthy several aspects of Pennsylvania’s mental health care system.

The report commended the state’s push to eliminate the use of restraints and seclusions through improved training that provides workers with an understanding of their patients’ needs and alternative methods of restraint – a move Jordan describes as providing more dignity for both patients and workers.

Pennsylvania has also admirably adopted evidence-based practices (EBPs), most noteworthy being its use of Assertive Community Treatment teams (ACTs). Described by Jordan as “hospitals without walls,” the teams provide a wraparound support system of therapy and assistance with housing and medicine issues, allowing the consumer to remain actively involved within the community. Approximately ten of the state’s 20 ACT teams are working under the EBP model.

The use of ACTs represents successful coordination in a diverse system of services within the state that includes state and private hospitals, county services and non-profit community providers. Counties are the first point of contact for almost all consumers of mental health care services. The Mental Health and Mental Retardation Act of 1966 requires that counties establish MH/MR programs with, at minimum, nine services: short-term inpatient and outpatient services, partial hospitalization and emergency services, consultation and education programs, follow-up care for those released from inpatient facilities, training programs, interim care for those awaiting admission to state mental retardation centers and intake, placement and referral services. Admission to one of the nine state hospitals is made through county programs after community services have been exhausted. Consumers who are not eligible for financial assistance, and are either paying out-of-pocket or through insurance plans, can make use of any services; those whose care is financially covered by Medicaid or other mental health/mental retardation funds are eligible for county and state services and non-profit agency care, but will not be financially covered for admission to a private hospital.

The report commended Pennsylvania’s other progressive developments for service providers. The state has developed the Pennsylvania Medication Algorithm Project for Schizophrenia (PennMAPS) – an EBP algorithm that spells out for psychiatrists a treatment process for schizophrenic patients that is based on the recommendations of providers from across the nation. Though currently used only in the state hospital system, the Department of Public Welfare has a long-term goal of both expanding the areas covered as well as developing it as a tool on the community level.

The state has demonstrated equally responsible attention in some areas of patient care, according to NAMI. It has worked to increase treatment capacity for patients suffering from both mental illness and substance abuse. The departments of Health and Public Welfare have developed criteria for mental health and substance abuse facilities to be approved as competent in treating co-occurring disorders. Those criteria include written procedures for assessing co-occurring disorders and a comprehensive plan that includes goals reflecting the presence of both disorders. The Pennsylvania Certification Board has also developed Certified Co-Occurring Disorders Professional and Certified Co-Occurring Disorders Professional Diplomat credentials; it has since trained almost 1,000 persons in these programs.

And – in Allegheny County, at least – prisoners with mental illnesses are receiving improved services upon release to aid their adjustment to reentry, including assistance with Social Security benefits and obtaining medication and housing.

There exist, however, areas that NAMI identifies as “urgent needs.”

Jordan gives credit to the state for current funding of mental health care – Pennsylvania ranks second nationally in terms of per capita mental health spending at $195.01 per person, and third in total mental health spending at just over $2.4 million – but says that the state’s mental health needs require additional spending.

Jordan says that funding is an issue throughout the country and emphasizes that the report isn’t attacking or criticizing Pennsylvania’s current level, but is instead suggesting areas of deficiency in a system otherwise adequately funded.

One of those areas is the lack of access to psychiatric services on the community level. Jordan says that many communities do not have any psychiatric services. There’s no reason consumers should remain in hospitals longer than necessary, he argues, simply because it’s the only way those consumers will have access to psychiatric services; instead, additional funds should be used to provide those services in communities.

Additional funding would also provide wage increases to direct care workers – a group that sees high turnaround largely related to pay. Jordan, who says he doesn’t “want to lose direct care workers to McDonald’s because they pay better,” argues that better pay increases retention, which in turn improves patient care by creating a workforce of seasoned, better-trained employees who are able to provide a higher level of care.

Jordan’s concern is illustrated by the experience of Susan Brothertown, shelter director of the Salvation Army’s Red Shield Family Residence in Philadelphia. She says the poor using Red Shield’s facilities end up using nearby community-based mental health services that have a high turnover of therapists and doctors, primarily due to issues of low pay. Brothertown says that turnover means consumers are unable to form the deep relationships with caregivers that are vital to proper mental health treatment.

Jordan would also like to see funds support more preventative services as preemptive treatments for consumers.

In response to the needs, NAMI has provided in the report what it sees as a source of funding for those services. It suggests placing the revenue generated by the lease or sale of former hospital sites in a trust that would supplement the mental health resources in the communities those closed hospitals served. Increasingly reduced hospital capacity has resulted in long waiting lists; those who do receive hospital care are often left with no access to additional community-level support.

Even more lackluster than services – which earned a category grade of C- – is access to information. Pennsylvania ranked among the bottom of all states in this area, earning a score of 2 out of a possible 10 on the CFTD and a category grade of D-. Within the CFTD, the state’s Web resources scored a mean 1.67 points out of possible score of 40, a number that indicates that accessing information including “Where to go for help for mental illness” and “How to communicate feedback or complaints to the State or County Mental Health Authority” can be done by consumers within a range spanning “some” to “great” difficulty.

Equal to inadequate funding in terms of repercussions, says NAMI, is Pennsylvania’s lack of a comprehensive blueprint for providing adequate mental health care. Jordan says it is not a lack of planning, but rather the lack of a commitment to plans. He sites as an example the recent closing of the Harrisburg State Hospital. The region had developed a plan based on a five-year set of goals, but the unexpected closure changed that plan overnight without the consultation of those involved in planning and put into disarray a structure on the county level and in the lives of families. If those responsible for changes including hospital closures don’t include planners in changes and share their objectives, he says, the system is left with a plan that nobody can trust will be followed. Highlighting the difference between the state’s planning efforts and a true blueprint, Jordan says: “If I have a map and somebody moves the road and doesn’t tell me, than I don’t really have a map at all.”

He says that a thorough blueprint showing plans for hospitals and how consumers fit into that plan with a set of goals and funding guidelines will help counties, the state and providers better know how to deliver care.

Reaction to NAMI Report

Deputy Secretary for the Pennsylvania Department of Public Welfare’s Office of Mental Health and Substance Abuse Services Joan Erney’s reaction to Grading the States is mixed.

Erney agrees with the criticism of the department’s website. She says that the intention was to create an integrated site that would appeal to consumers with integrated needs, namely issues of mental health and substance abuse. Feedback, however, indicated that while the site was well intentioned, it was not successful. The department has since created a communication strategy that incorporates input from consumers, advocates and providers to explore how to provide better access to information through a less-cumbersome, more user-friendly site, especially for those who may not be familiar with the department’s existing resources.

The deputy secretary also agrees that NAMI’s proposal of a land use trust is worth exploring, though no concrete plans are in place to implement such a program.

Erney, however, disagrees with NAMI’s assertion that the state lacks a comprehensive blueprint. The state’s direction, she says, is established in several documents including 2005’s A Call for Change: Toward a Recovery-Oriented Mental Health Service System, mandated annual reports from each county based on local input and the Secretary of the Department of Public Welfare’s recent integration plan for children.

According to Jordan, these documents fall short of NAMI’s expectation of a firm commitment to agreed-upon practices and goals. The county plans represent evaluations of what is and isn’t working well, but contain no proactive commitments. More importantly, the Call for Change workgroup found that the charge of “creating a blueprint” for developing a recovery-based system required efforts outside both the workgroup and the Office of Mental Health and Substance Abuse Services. As the report says, “It is to be considered a ‘living-breathing’ document and not a ‘set in stone’ plan. It is anticipated that it will serve as a foundation for strategic change planning at many levels over time, but it is not a strategic plan in and of itself.” To NAMI, that’s not an acceptable blueprint; it wants the plan “set in stone.”

But according to Erney, the state is excelling in other areas of mental health care that was not highlighted by NAMI.

The state’s county-based system allows local governments to develop services specific to their populations in addition to those mandated by the state. In rural Greene County, where the stigma of mental health means those suffering avoided care from traditional providers, services have been integrated into community settings like clinics. And in economically-disadvantaged Fayette County, the high adolescent suicide rate led to the development of a program of targeted intervention and problem resolution in schools.

Erney also highlights the state’s valuation of consumer and family input, manifested in the Consumer/Family Satisfaction Team – a group charged with providing the department feedback on its services.

The department is also considering other developments in addition to those recommended by NAMI. Erney says it will continue to focus on integrated systems for both mental health and substance abuse care. And it hopes to have in place by July a peer specialist support system that will provide employment for those with mental health issues as well as reduce incidents of inpatient hospitalization and emergency room visits, as has been demonstrated in other states using such a system.

Within the legislature, Pa. Sen. Pat Vance (R, Cumberland and York) – a member of the Public Health and Welfare Committee – questions NAMI’s identification of funding as an urgent need, citing the state’s high rankings in both per capita and total mental health spending.

Vance is also skeptical of the report’s credibility since unknown “masked” graders completed 71 percent of total scoring – a view she says is based on her experience with anonymous letters from constituents.

Like Erney, however, Vance agrees with NAMI’s contention that Pennsylvania requires better information access for consumers, and she believes that the state’s poor performance on the CFTD – based in large part on such access – greatly impacted its score. In her view, the state doesn’t lack appropriate funding or services, but rather the appropriate vehicle to deliver these in a way that would end what she sees as a mental health disparity among consumers.

Within the provider community, access to mental health care is a key issue. Michael Ogdon, a spokesperson for Montgomery County’s Eagleville Hospital, admits that additional funding is always desirable, but recognizes that the mental health community can only expect so much in a state already committed to high spending relative to others. Like Erney and Vance, however, he says that there’s always room for improvement in terms of access to information, especially among Pennsylvania’s diverse population, but more important is a need for greater access to services among the state’s rural communities.

Suburban Eagleville has a referral pattern of mostly urban and suburban patients, but receives a large number of people from the outlying rural areas. The problem, he says, is that there are people with needs in those areas who because either of age or financial constraints are unable to take advantage of services not offered in the community.

Pennsylvania Psychiatric Society executive director Gwen Loehman echoed those sentiments. She, too, questions NAMI’s claim that funding is an urgent need. For Loehman, the issue is not as much the aggregate amount of funding as it is they way in which money is spent. Psychiatric services, Loehman says, are underfunded, with many psychiatrists handling a number of patients that allows them little time to do more than manage medication. She says that limited time means many psychiatrists are unable to develop the deep relationships with patients required for proper recovery.

Loehman, however, agrees with NAMI that community services are hampered by what she sees as a “disjunction between the system.” Service gaps in some areas – usually in the form of a county’s failure to provide a subacute care system or long-term resident program – she says, mean patients often remain in hospitals longer than necessary. The state’s emphasis on community-based service is ideal, but only effective if funds are adequate to support most services for consumers, and the coordination between county services and hospitals is sufficient so that all levers are working together. She cites as an example the state’s bifurcated drug and alcohol addiction treatment system, divided between the departments of Health and Public Welfare and creating a split-funding stream that she says needs to be consolidated.

Loehman also suggests that a parity law that equates mental health treatment with other services already covered by insurers would solve some gaps. That’s a thought echoed by Joseph Rogers of the Mental Health Association of Southeastern Pennsylvania (MHASP). His organization has been working in support of a law that would include mental health services in third party insurer compensation. Too often, he says, consumers not covered by Medicaid are able to obtain crisis care but lack the funds necessary for follow-up care. The effort was given a lift recently with renewed efforts by Sens. Domenici (R-NM) and Kennedy (D-MA) to pass a national parity bill.

The mixed reaction to the NAMI report suggests that many of the changes it proposes will not likely see concrete manifestations anytime soon.

An overhaul of the information access the state provides the consumers of its mental health services seems likely, given widespread agreement on this need, as well as the Department of Public Welfare’s indication that progress in this area can be expected.

Little else within the state’s mental health system, however, appears to be facing any significant reform. Sen. Vance says there is no current legislation proposed or in discussions addressing NAMI’s reform points. Many appear to regard NAMI’s call for more funding as overblown, and with the state legislature lukewarm to the idea of increasing the system’s budget, it seems unlikely that this area will be addressed. Service gaps appear likely to face the same future: while the advocacy community and providers join NAMI in labeling this as a need, no concrete plans are in place beyond those outlined by Erney.

Jordan recognizes the difficulty posed by NAMI’s calls. He says it’s not unrealistic to be hopeful that the organization’s recommendations will be adopted, but accepts that despite support from both parties on the issue of mental illness, the state faces challenges unrelated to mental illness, citing as an example the struggle for better school funding as a possible obstacle to the increased funding NAMI advocates.

For many, Grading the States is not a comprehensive evaluation of a state’s system but instead a call for more consumer services from an organization representing consumers.

“I don’t think it’s entirely fair,” says MHASP’s Joseph Rogers. “Pennsylvania is a big state and very diverse; it’d be very hard to judge that in one report card.”

CST, Recovery Model and the integration with Evidence based Practices

  Here’s a link to another PDF file that pertains to the Consumer-driven movment that is taking hold in many places.  Like the previous PDF files, it is from NAMI Southwestern Pennsylvania, and it discusses Consumer/Family Satisfaction Teams (C/FST) and their role in molding a Recovery oriented Mental Health System.  It also discusses a program in Florida that I never heard of prior to reading this file, but it is a program where the consumers are alotted a certain amount of money to choose their own method of recovery and can be anything from health spas to rent payments, and I imagine anything that would be considered a healthy choise to aid in their recovery.  Both sections of the article were interesting, but I felt that since I had created a page about C/FST that this seemed like a fitting file to link to.

So, I’ll quit rambling and add the link ….

“Spending Money in All The Right Places:
New Directions in Consumer and Family Involvement”


  Rather then do another post, I decided to update this one since they kind of tie together.  This is another PDF file called, “Integrating Evidence-Based Practices and the Recovery Model” it discusses evidence based practices and how to integrate them with the Recovery model.  It’s quite exstensive, but worth reading.

NAMI Southwestern PA on State Hospital Closure/Downsizing

   The following links will take you to a PDF files created by NAMI of Southwestern Pennsylvania, their site is locate at http://www.namiswpa.org/index.html

“Responsible State Hospital Downsizing / Closure
A NAMI Southwestern Position Brief: February 2007”

Harriet Baum
NAMI Southwestern PA
September 10, 2007
Testimony — Mayview State Hospital Closure

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