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February 22, 2012

Volume XII, Number 4

I nthis issue section head

State Legislation, Policy & Reports 

  1. MN: Lawmakers Consider Eliminating 20% Pay Cut To Family Caregivers  More...
  2. PA: Governor's Proposed Budget Would Reduce Nursing Home Medicaid Rates More...
  3. Report: NY Hospitals Placed 4,000 Liens While Receiving $246 Million In Indigent Funds  More...
  4. OR: 2,608 Confirmed Abuse Cases For Elderly And Adults With Physical Disabilities  More...
  5. State Medicaid Spending Increased By 28.7%; Key Considerations For Managed Care More...
  6. CA: State Extends Adult Day Health Care For 1 Month; CRC Campaign Gains Steam  More...

Federal Legislation, Policy & Reports 

  1. President Obama's Proposed Budget: Mixed Bag For Family Caregivers  More...
  2. Report: Feds Should Pay 100% Of Dual Eligible Cost Or Increase FMAP Substantially  More...
  3. EEOC Holds Hearing Focused On Pregnancy And Caregiver Discrimination  More...
  4. Administration On Aging Releases Profile Of Older Americans In 2011  More...
  5. Guide: How To Make ACOs Work For Consumers  More...
International News 
  1. Study Examines Caregiving Activities Performed By Palliative Care Staff  More...
  2. 30% Of Women Caregivers Feel Work And Family Responsibilities are "Rarely Or Never" In Line  More...

Research Reports & Journal Articles

  1. Study Constructs Model To Analyze Public Subsidy For Home Care  More...
  2. Study:  Dignity, Sense Of Control Important To Older Adults With Disabilities  More...
  3. 73% Of Advanced Cancer Patients Discuss End-Of-Life Wishes, But Not Soon Enough  More...
  4. Study: More Screening For Cognitive Impairment Leads To More Diagnoses  More...
  5. Doctor Intertwines Medicare Hospice Policies With Difficulty In Predicting Death  More...

Conferences & Trainings

  1. Webinar: Spousal Caregiving: One Woman's Love Story - Feb 23, 2012 (2PM EST)  More...
  2. Alzheimer's Challenge 2012: Tools For Assessing Memory, Mood, Thinking, Activity  More...
  3. VA Transportation And Community Living Initiative Announces Additional Grants  More...
  4. 2012 Purpose Prize Applications Now Being Accepted  More...
  5. CMS Announces Another Round Of Grants For Money Follows The Person   More...

Funding, Media & Miscellaneous 

  1. FDA Blog: Thalidomide Disaster Avoided Because Of Smart Regulation  More...
  2. Death Of 90-Year Old Speaks To Difficulty In Addressing Self-Neglect   More...
  3. Daughter Who Is Journalist Discusses "The Cost Of Dying"   More...
  4. Editorial: Nursing Home Owners Should Stop Corporate Shell Ownership Games  More...
  5. Daughter Suggests "Elderschadenfreude" To Describe Caregiving In 2012   More... 

Research Registry  

  1. Lewey Body Dementia Association Survey  More...

If you are interested in having your study listed in FCA's Research Registry, please contact:  


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Minnesota Public Radio reports that Minnesota state lawmakers are still grappling with how to address a 20% pay cut for family caregivers that was included in the state's most recent budget.    A judge temporarily blocked the pay cuts and is expected to make a final decision in April, meanwhile, a lawmaker has introduced legislation to stop the cut.  Steve Larson, the Policy Director for the Arc of Minnesota, reported that families have contacted the Arc about costlier nursing home care because they can't afford a 20% drop in their incomes.  For more information, visit:

MPR: "Lawmakers urged to revoke 20 percent pay cut on personal care assistants" 

FCA Blog: "Are Family Caregivers Worth Less?" 


The Philadelphia Inquirer reports that Governor Corbett's proposed budget would reduce Medicaid nursing home reimbursements by four percent.  The PA Health Care Association, the trade group for nursing homes in the state, suggests that this would equate to an $8 a day cut in reimbursements for recipients whose nursing home bill is paid for by Medicaid.  The association suggests that nursing homes are already losing $19.23 a day on Medicaid reimbursements because of earlier cuts.  Nancy Kleinberg, a co-owner of a nursing home in Philadelphia, told the Inquirer that cutting aid to the elderly poor who rely on Medicaid is an easy thing to do and "Their need is so great, but their voice is so small." The association reports that nursing homes are also struggling because of cuts to Medicare, a program that had historically helped subsidize the low reimbursement rates for Medicaid.  For more information, visit:  

A new report analyzes the state's Indigent Care Pool program and finds widespread differences in how hospitals provide financial assistance to patients.  The report was written by the Community Service Society and is a timely analysis because of changes to charity care under the Affordable Care Act that will reduce federal dollars for charity care and change rules on how funding for this program can be allocated.  The authors explain that 20 hospitals refused to release their financial aid applications, and of the 181 hospitals that did release the applications, 66% violated the law, did not comply with Dept. of Health guidance, or imposed additional barriers, while at the same time collectively receiving over $463 million in funding from the program.  The authors recommend implementing a uniform application tool, regular compliance audits, and incentivizing hospitals to comply with new provisions in the Affordable Care Act.  For more information, visit:
 reports on a new report from the Oregon Dept. of Human Services, which received more than 27,000 reports of suspected elder abuse in 2010.  Of the reports received, almost 12,000 were investigated, and 2,608 were confirmed cases of abuse.  Women were twice as likely to be abused, and the elderly were abused more often than disabled adults.  Eighty-five percent of the victims were abused in their homes, and relatives were the most common abusers when the abuse occurred inside the home.  There were more than 850 confirmed cases of financial exploitation, and 1,619 cases of neglect. There are two bills under consideration in the 2012 Legislature that would address elder abuse.  For more information, visit:

APS Community and Facility Annual Report 2010                                                                                                                            


A report and survey of Medicaid Budget directors from the Kaiser Commission on Medicaid and the Uninsured finds that states continue to face financial pressures with Medicaid, especially since the expiration of the increased FMAP from the Recovery Act.  State Medicaid directors expressed support for the shift to integrating care for dually eligible beneficiaries, but are also concerned about short timelines that may not provide sufficient time for smooth transitions.  Another report analyzes managed care for people with disabilities and, citing the mixed evidence on the effectiveness of managed care, and diverse needs of this population, provides considerations for policy makers, including payment, provider networks and delivery systems, and patient protections and oversight.  For more information, visit:



The San Francisco Chronicle reports that a previously scheduled date of March 1, 2012, for the transition from Adult Day Health Care (ADHC) to a smaller program, Community Based Adult Services (CBAS) has been postponed by one month to give the federal government additional time to process the paperwork.  Chan Soon Fong, interviewed by the Chronicle, is 92 years old, suffers from dementia, memory loss, hypertension, osteoporosis, anemia, arthritis, ulcers, a compressed lumbar spine and diabetes, but was ruled ineligible for continuing in the CBAS program.   There are 68 clients at her ADHC, and a total of 20 of them were found to be ineligible to stay in the program.  While participants can appeal, the timeline could take 60 to 90 days, and the program director at Fong's location points out that if she loses the appeal, then she won't have a similar place to attend.  Governor Brown recently proposed eliminating the 11 California Caregiver Resource Centers (CRCs) in his budget. (FCA is one of the 11 CRCs).  A petition started by the CRC's earlier this month against the cuts is adding over 150 signatures a day with over 2,000 signatures in less than two weeks and over 350 comments from petition signers about the assistance they have received from CRCs.   For more information, visit:

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President Obama's Proposed Budget: Mixed Bag For Family Caregivers


President Obama released his proposed FY 2013 budget on February 13, 2012.  The budget calls for $8 million more funding for Adult Protective Services grants and an additional $6 million for Alzheimer 's disease Demonstrations Grants.  Funding for most other programs supporting family caregivers (including the Lifespan Respite program) would remain at the same level as FY 2012.  Some senior programs would have larger investments, including an additional $100 million for senior housing, $10 million for housing counseling, and $10 million for CSFP, a food support program for seniors.  Staring in 2017, the proposed budget calls for a co-pay of $100 in Medicare for home health care services, (based on a January 2011 recommendation from MedPac), however, this payment would only be due for episodes with five or more visits that were not preceded by a hospital on in-patient post-acute stay. For more information, visit:

HHS: "Fiscal Year 2013 Budget in Brief" 

National Council on Aging: "FY13 Budget Request Includes Both Investments, Cuts for Senior Programs" 


Report: Feds Should Pay 100% Of Dual Eligible Cost Or Increase FMAP Substantially


A new report from Georgetown University suggests two strategies that would substantially increase the federal government's share of long-term care costs.  The authors cite shifting demographics contributing to an increased need for long-term care and uneven LTC spending between states and suggest that the federal government could play a larger role. The first option would be for the federal government to fully finance a long-term care benefit for dual eligibles, which would stop cost-shifting between the programs.  The second suggestion is to enhance the federal match for Medicaid Long-term care, a match that would be tied to percentage of the population aged 75 or older who are at 300% or less of the Federal Poverty Level.  For more information, visit:

Georgetown University: "The Importance of Federal Financing to the Nation's Long-Term Care Safety Net" 


EEOC Holds Hearing Focused On Pregnancy And Caregiver Discrimination

The Equal Employment Opportunity Commission (EEOC) held a hearing on February 15, focused on discrimination experienced by employees because of their status of being pregnant or because of their status as caregivers. Witnesses discussed cases of women being demoted, held to higher standards, or fired for being pregnant, while employers also fired men for taking leave to care for a family member.  Joan Williams, a law professor, and Director of the Center for WorkLife Law, suggested in her written testimony that employers and their lawyers need to better understand laws against caregiver discrimination, and also listed a number of egregious cases from employees that have called the Center's hotline.   The EEOC is accepting comments from the general public on the meeting for 15 days following the hearing, and comments can be emailed to:  For more information, visit:


EEOC: "Unlawful Discrimination Against Pregnant Workers and Workers with Caregiving Responsibilities"


Administration On Aging Releases Profile Of Older Americans In 2011

The US Administration on Aging released a profile of older Americans in 2011, a compilation of demographic data on older Americans.  The median income of older persons in 2010 was $25,704 for males and $15,072 for females, while the main sources of income in 2009 were Social Security (reported by 87% of older persons), income from assets (53%), private pensions (28%), government employee pensions (14%), and earnings (26%).  Thirty-seven percent of older persons reported some type of disability in 2010, while 27% of community-resident Medicare beneficiaries aged 65 or older in 2009 had difficulty with one or more activities of daily living.  For more information, visit:


AOA: "A Profile of Older Americans: 2010"  


Guide: How To Make ACOs Work For Consumers

Families USA released a brief that analyzes several aspects of Accountable Care Organizations (ACOs) and how to make them consumer friendly.  ACO assignment is one issue, under one model, it will be "open," however, under another model, patients would have to see a provider within the ACO, and the authors suggest including an easy to opt-out provision with the closed model.  If an insurer doesn't allow opt-outs, then strong care transitions are important, and the authors also suggest allowing the patient to continue seeing a provider if they are already undergoing a course of treatment.  The timing of assignments to an ACO is also important, while retrospective assignment may mean that ACOs try to provide excellent, coordinated care to all patients,  prospective assignment may allow providers to target services to the highest cost patients with the most needs.  The authors suggest that patients should receive a notice of assignment, what it means for the beneficiary, and what their rights are as a part of an ACO.   For more information, visit:


Families USA: "Designing Consumer-Friendly Beneficiary Assignment and Notification Processes for Accountable Care Organizations"  


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Study Examines Caregiving Activities Performed By Palliative Care Staff

An article in the February issue of PLOS Medicine uses interviews with staff from 16 palliative care facilities in nine countries to examine the non-pharmacological caregiving (NPCAs) activities performed by staff for the dying individual as well as their family members. Staff members submitted 914 statements of caregiving activities, and the greatest number of activities referenced contact with the person's body. Communication (especially between professional and the family) was the next most frequent activity, followed by creating a pleasing environment, and the "backstage" activities that families wouldn't necessarily see. The authors conclude: "Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research."  For more information, visit:

PLOS Medicine: "Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study" (article is free) 



30% Of Women Caregivers Feel Work And Family Responsibilities are "Rarely Or Never" In Line


An Australian sociologist, Barbara Pocock, analysed Australian Bureau of Statistics employment data and found some large differences between caregivers for the elderly and caregivers for young children.  In her analysis, 30% of employed women who are also caring for an elderly person say that their work and family responsibilities are "rarely or never" in line, whereas only 16% of young mothers felt the same way.  The findings are included in her new book, entitled "Time Bomb: Work, Rest, and Play in Australia Today."  Professor Pocock suggest that working carers need additional flexibility in the workplace, and the article explains that Adam Bandt, a Member of Parliament, is expected to introduce legislation to improve Australia's Fair Work Act.  For more information, visit:  


The Australian: "Call to help women caring for parents"   



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Study Constructs Model To Analyze Public Subsidy For Home Care


A new paper uses a model to analyze how families make decisions on home care and how a public subsidy for home care would interact with those decisions.  In their model, there is one child who earns $19.56 per hour and one elderly parent, and the price of formal care is $10.03 per hour.  In one of the simulations, the authors find that when the child's wage rate is higher than $28 an hour, they begin to purchase formal care.  When the government subsidizes the purchase of formal care (by the parent), then the child eliminates his or her purchase of formal care in the model, but slightly increases the amount of informal care they provide.  The authors explain, "On average, one dollar of government subsidy reduces the formal care purchase of the child by .72 dollars when the degree of altruism of the child is .25"   For more information, visit:

CESIFO: "Fiscal Incidence when both Individual Welfare and Family Structure Matter: The Case of Subsidization of Home-Care for the Elderly" 


Study:  Dignity, Sense Of Control Important To Older Adults With Disabilities

A study in the January 30 issue of the Journal of the American Geriatrics Society interviewed 62 adults (mean age of 78) at the San Francisco On Lok Lifeways Program, the first Program of All-inclusive Care for the Elderly (PACE).  Elderly adults who scored higher than 17 points on the Mini-Mental State Examination were interviewed, and 87% rated their quality of life in the middle range of the quality-of-life spectrum (fair to very good). Dignity and sense of control were two themes most closely tied to overall quality of life.  For more information, visit:


Journal of the American Geriatrics Society: "Quality of Life in Late-Life Disability: "I Don't Feel Bitter Because I Am in a Wheelchair" (Abstract is free) 

UCSF Press Release: "Dignity, Sense of Control Keys to Quality of Life for Disabled Elderly, Study Finds"    



73% Of Advanced Cancer Patients Discuss End-Of-Life Wishes, But Not Soon Enough


A study in the February 7 issue of the Annals of Internal Medicine examined data on 2,155 patients with advanced lung or colorectal cancer and found that 73% of the patients had discussed end-of-life care with their doctors.  However, for the 1,000 patients who had passed away, the median time of the discussion was 33 days before death, and the authors suggest that these talks should be happening at an earlier point in the progression of the disease.  Oncologists documented the end-of-life care talks with 27% of their terminally ill patients in the study.  For more information, visit:


Annals of Internal Medicine: "End-of-Life Care Discussions Among Patients With Advanced Cancer A Cohort Study" (Abstract is free)  



Study: More Screening For Cognitive Impairment Leads To More Diagnoses  


A study in the February issue of the Journal of the American Geriatric Society reports on the implementation of a brief cognitive screen at primary care visits.  The study was conducted at seven VA Medical Centers and included veterans aged 70 or older who had not been previously diagnosed with a cognitive impairment.  If a veteran failed a brief cognitive screen, they were then offered a comprehensive evaluation.  Of the 8,342 veterans who were offered the screening, 97% (8,063) accepted, and 26% (2,081) failed the screen.  Of the 26% who failed, 28% (580) agreed to further evaluation, and 93% (540) were diagnosed with cognitive impairment, including 75% with dementia.   The authors note that this intervention led to higher diagnosis rates than clinics without the program, and that the study's findings: "run counter to the current standard recommendations by the American College of Physicians, U.S. Preventive Health Task Force, and Alzheimer's Association, which discourage routine cognitive impairment/dementia screening on all older patients at a certain age. Screening is only recommended if a person comes to a provider with some type of complaint that could be due to dementia."  For more information, visit:


The Journal of the American Geriatric Society: "Finding Dementia in Primary Care: The Results of a Clinical Demonstration Project" (abstract is free) 

EurekAlert: "Cognitive impairment in older adults often unrecognized in the primary care setting" 



Doctor Intertwines Medicare Hospice Policies With Difficulty In Predicting Death


A personal narrative in the February issue of Health Affairs provides a unique perspective from a former home hospice medical director and his experience with a patient with COPD. The patient, Mrs. R, was placed on hospice care, which provided COPD medications, professional caregiver support, and a nurse who could assist over the phone or come to her home.  Mrs. R had received the services for almost a year when her pulmonologist, citing tests that showed her lungs hadn't deteriorated markedly in more than six months, said he wouldn't sign the necessary hospice certification stating that he believed she had less than six months to live.  As a result, she was forced to be discharged from the hospice care benefit, and within six weeks, she was in the Intensive Care Unit, where she remained for another week until her son agreed to withdraw life support.  The author of this narrative, Hunger Groninger, discusses several policy alternatives, including a demonstration in the Affordable Care Act that will allow people to receive hospice and curative care concurrently.  For more information, visit:

Health Affairs: "A Gravely Ill Patient Faces The Grim Results Of Outliving Her Eligibility For Hospice Benefits" (Article is Free) 




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Lotsa Helping Hands is presenting a webinar on Thursday, February 23, at 2pm (EST) with Sylvia Mackey, the widow of John Mackey, an NFL football player who has been ranked in the top 100 football players of all time.  John Mackey was diagnosed with frontotemporal dementia in 2006, and Sylvia's successful advocacy convinced the NFL to develop the "88 Plan" that pays for assisted living and adult day care for former NFL players.  For more information, or to register for the webinar, visit:  


Lotsa Helping Hands: "Spousal Caregiving: One Woman's Love Story"




Submissions for the Alzheimer's Challenge 2012 are now being accepted.  The challenge is seeking simple, cost-effective, consistent tools that could be easily used to assess memory, mood, thinking and activity level over time to help improve the diagnosis and monitoring of people with Alzheimer's disease.  The winner of the challenge will receive $175,000, and five finalists will receive $25,000.  The submission deadline is March 16, 2012.  For more information, visit:


Alzheimer's Challenge 2012 



VA Transportation and Community Living Initiative Announces Additional Grants


The Veterans Transportation and Community Living Initiative (VTCLI) grant program recently announced that it is making $25 million in funding available for FY 2012 Bus and Bus Facility funds, and $5 million of FY 2011 Research program funds.  Each applicant can request up to $2 million for One-Call/One-Click Transportation Resource Center capital costs, and up to $50,000 for support costs.  Applications are due by April 19, 2012.  For more information, visit:





2012 Purpose Prize Applications Now Being Accepted


The Purpose Prize is now accepting applications from individuals age 60 or older who are improving their communities.  Five individuals age 60 or older will receive $100,000 each.  Nominations are due by March 22, 2012, for more information, visit:


2012 Purpose Prize 



CMS Announces Another Round Of Grants For Money Follows The Person


CMS announced that another round of planning grants are available for states that are not yet participating in Money Follows the Person program.  The deadline to apply for a grant is March 6, and the funding (up to $200,000 for each state) is to help states prepare an application for an MFP award that will be announced later in 2012.  For more information, visit:


Money Follows the Person 




Funding, Media & Miscellaneous banner

FDA Blog: Thalidomide Disaster Avoided Because Of Smart Regulation


A blog posting from Margaret Hamburg, MD, the Commissioner of the Food and Drug Administration, discusses the sedative thalidomide, a drug that she explains was never approved for use in US because of a vigilant FDA Medical Officer.  Hamburg explains that the drug was linked with birth defects in the 1960s, and makes a broader case that regulation is necessary to avoid potential public health threats like thalidomide.  She also suggests that regulation, when done correctly, reduces litigation, instills consumer confidence, levels the playing field for businesses, and can spur additional research and development.  For more information, visit:


FDA Blog: "50 Years after Thalidomide: Why Regulation Matters"


Death Of 90-Year Old Speaks To Difficulty In Addressing Self-Neglect


An article in the Pittsburgh Post-Gazette focuses on the death of a 90-year old man, Stanley Biolowas Jr., who passed away but whose body was not discovered for some time afterwards. Because of the amount of debris in his home, it took firefighters four hours of searching before they found his body.  Neighbors interviewed for the story said they had tried multiple times to assist him but were unsuccessful.  A representative from the Allegheny County Area Agency on Aging explained that their records indicated their only contact with him was at a senior center, and that the standards for intervening in a case of self-neglect are fairly high.  For more information, visit:


Pittsburgh Post-Gazette "Death in trash-filled home shows difficulty of aiding solitary seniors"


Daughter Who Is Journalist Discusses "The Cost Of Dying"


Lisa Krieger, a writer for the San Jose Mercury News, chronicled her experience in making end-of-life health care decisions for her father with Alzheimer's.  Krieger contrasts her father's DNR and "Desire for Natural Death" orders with his total hospital bill from Stanford hospital of over $323,000 for the final ten days of his health care and points to the many gray areas in end-of-life decision-making.  Her article prompted several hundred readers to share their experiences, and a follow-up article provides nine lessons based on what readers shared.   Krieger was also interviewed for the Bioethics Forum.  For more information, visit:


San Jose Mercury News: "The Cost of Dying" 

Bioethics Forum: "The Trial of "Death by Medicine": An Interview with Lisa Krieger" 



Editorial: Nursing Home Owners Should Stop Corporate Shell Ownership Games 


In a recent editorial, the Tampa Bay Times discusses the complex ownership structures used by some nursing homes that can prevent family members from receiving compensation in the cases of neglect.  The issue is especially relevant in Florida after Governor Rick Scott fired the state's LTC ombudsman after he requested ownership information from nursing homes in the state, a request he was required to make under the Affordable Care Act.  The editorial cites the case of a son suing a nursing home for abuse and neglect, and while a jury awarded him $200 million, the companies/partnerships that owned the nursing home have essentially disappeared.  For more information, visit:


Tampa Bay Times: "Make nursing home owners more accountable"  

Tampa Bay Times: "Who should pay the $200 million for nursing home death? It's complicated" 



Daughter Suggests "Elderschadenfreude" To Describe Caregiving In 2012 


Sandra Tsing Loh, a writer for The Atlantic, writes a humorous account of her journey into caregiving for her father as well as his girlfriend.  Loh references Jane Gross and Gail Sheehy's books on caregiving and introduces her term of "Elderschadenfreude" which she describes as the "secret pleasure of hearing about aging parents that are even more impossible than yours."  Loh's column touches on the many issues of caregiving with a tongue-in-cheek sense of humor about her relationship with her father, the cost of hiring direct care workers, and whether or not she is "spoiling" her dad.  For more information, visit:


The Atlantic: "Daddy Issues Why caring for my aging father has me wishing he would die"  





Research Registry section head


Lewey Body Dementia Association Survey


The Lewey Body Dementia Association (LBDA) is conducting a survey to assess if there are differences in how grief is experienced by caregivers for individuals with Lewy bodies, Alzheimer's disease, Parkinson's disease with and without dementia, and frontotemporal degeneration.  The survey will also assess the well-being and quality of life for caregivers of individuals diagnosed with the neurodegenerative diseases. Internet access is required to participate in the study, and LBDA needs 500 caregivers who are currently providing care for each different disease that is being studied.  For more information, or to participate, visit:

Neurodegenerative Disease Caregiver Study





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The National Center on Caregiving at Family Caregiver Alliance works to advance the development of high-quality and cost-effective policies and programs for caregivers in every state in the country. The National Center is a central source of information and technical assistance on family caregiving for policymakers, health and service providers, program developers, funders, media and families. For questions or further information about the National Center on Caregiving, contact or visit the Family Caregiver Alliance website at

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