The RESIDENTIAL OMBUDSMAN AND PUBLIC GUARDIAN ADVISORY BOARD

will hold a public meeting on: June 19, 2020

8:30 AM — 11:30 a.m.

Office of the Long-Term Care Ombudsman - LTCO Due to the recent virus issues, this meeting will be held

by Zoom teleconference only. Attendees should not come to the office.

Instructions provided on last page for participating by video conference.

Agenda 8:30 - 8:50 Call to Order/Welcome/Introductions/Committee Business Approval of Agenda Approval of Minutes Correspondence, Announcements, Related Activities After Meeting Letters New Business 8:50– 9:20 Director’s Policy and Legislative Update (Fred Steele) 9:20 – 9:30 Operations Reports from LTCO, RFO and OPG 9:30 - 9:40 Public Comment 9:40 - 9:50 Federal Conflict Subcommittee Subcommittee: Jan, Dwight, Roberta 9:50-10:00 Workforce Development Subcommittee Subcommittee: Helen, Susan, Sherry 10:00 - 10:30 Sara Kofman, Public Policy Director - Alzheimer's Association of Oregon 10:30 - 11:00 Workforce Development Commission Planning Discussion

Via Teleconference

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down arrow. Clicking on the Video icon will let you start and stop your video feed Is the public permitted to attend this meeting? Members of the public are invited and encouraged to attend Committee meetings. Persons wishing to comment are asked to indicate that they would like to speak during the public comment period and indicate the topic of their comments when they sign in before the meeting. They will be allotted three minutes to make their comments. Written summaries of public comments are appreciated to ensure they are accurately reflected in the meeting minutes. Please plan to submit 15 copies of written materials at the time of your presentation. Who do I contact if I have questions or need reasonable accommodations? The meeting location is accessible to persons with disabilities. A request for an interpreter or reasonable accommodations should be made at least 48 hours prior to the meeting by calling 800-522-2602. If you are interested in volunteering: Prospective or current volunteers are welcome to attend any Residential Ombudsman and Public Guardian Advisory Board meeting. For an application or more information about volunteering for any of the OLTCO programs, visit www.Oregon.gov/LTCO or call Natascha Cronin at 971 600-6149.

Residential Ombudsman and Public Guardianship Advisory Board (ROPGAB) May 15, 2020

Office of the Long-Term Care Ombudsman

3855 Wolverine St NE, Ste 6 Salem, OR 97305

Draf t Minutes

All Members and Guests Participated by Zoom Board Members Joe Leykam, Chair JW Terry, Vice Chair Jan Friedman Mark Williams Helen Kao Dwight Mowry Allen Hines Sherry Stock Diana Allen Roberta Janssen Susan Schreiber Guests Michael Streepey, DAS Kyndall Mason, SEIU Paula Boga, ARC of Oregon Staff Fred Steele, Director & State Long-Term Care Ombudsman Ashley Carson-Cottingham, Deputy Director Toni Larson, Residential Facilities Ombudsman Chris Rosin, Oregon Public Guardian and Conservator Tami Hinshaw, Board and LTCO support

Call to Order: 8:32 a.m. Call to Order/Welcome/Introductions/Committee Business Introductions were made. Approval of Agenda – Approved unanimously Approval of Minutes – With the change requested by Ms. Janssen to the Federal Conflict Committee report to be made, the minutes were approved unanimously. Correspondence, Announcements, Related Activities End of Life Position Statement related to COVID19 response - Dr. Kao Dr. Kao was unable to complete the letter to DHS regarding visitation restrictions and End of Life Care for residents in facilities. She will be able to work on it over the next couple weeks.

Chair Leykam shared that Foster Creek’s licensing was revoked and it is now under a class action lawsuit. All residents were removed. Thirty out of the 96 residents died from COVID 19. New Business Chair Leykam reported DRO is very active and is doing a great job. Director Steele suggested the Board craft a letter regarding mandated testing in long-term care facilities. Director’s Policy and Legislative Update - Director Steele Director Steele reviewed his update with a reminder that the office is still “closed” with a daily staff presence still occurring. Ombudsmen and Guardians are still generally not visiting care facilities; however, the Guardians are still visiting clients outside of long-term care. Agency operations are otherwise still fully functioning. Director Steele reviewed the budget concerns for current biennium:

• All agencies were required to submit proposed cuts equaling 17% of remaining budget. • May 20 state revenue forecast will trigger reduction decisions by legislature and Governor • Options are expected to include agency budget cuts, furloughs, hiring freezes, federal

emergency funds, “rainy day” funds • Agency Directors had already been advised to:

§ Halt discretionary spending § Hold vacant non-critical positions

Federal CARES Act: $267,000 already received for LTCO efforts related to COVID For the 2021 Legislative prep, Director Steele shared the Agency Request Budget is due the end of July and the agency submitted 3 legislative concepts on April 17th. Operations updates – Deputy Director Ashley Carson-Cottingham

§ Budget Update - Deputy Director Ashley Carson-Cottingham shared the agency couldn’t get to the required amount in the budget cut exercise without proposing cutting some positions. She believes the Legislature will keep the agency as whole as possible.

§ Agency website / IT – A new LTCO website has been created which will be controlled inhouse. She asked that everyone let her know if they see anything that needs attention.

§ PPE for staff – We received a shipment of PPE. Some masks though are not NIOSH approved. She requested a small quantity of N95 for reuse. She shared there is a company in Eugene that provides sterilizing services.

Operations Reports from LTCO, RFO and OPG Ms. Larson said she is available for questions on her report. She shared her program is making great strides. The cases are intense, relationships are enhanced. They’re working on finishing the database work and intensified training work. They’re keeping close contact with their nine volunteers who are anxious to get back to work. Mr. Rosin shared his program is at full capacity and is unable to accept new requests at this time. Public Comment – Mr. Streepey commended Director Steele on a good job covering the status of the budget.

Guest Kyndall Mason – SEIU Ms. Mason shared her background and current work with SEIU locals and answered questions from the Board. Chair Leykam asked for more information which Ms. Mason said she would send. Dr. Kao will stay in touch with her and Chair Leykam will send her our information. Director Steele and Chair Leykam thanked her for her time and focus. Policy Document on Workforce Development and COVID19 https://seiu503.org/wp-content/uploads/2020/05/LTC-paper3-1.pdf Guest Paula Boga - ARC of Oregon Ms. Boga gave a general overview of the organization’s work, partnerships, and focus. Her organization would like to collaborate and partner with OLTCO and other care-centered organizations. After Board discussion about support of the two organizations, Director Steele suggested a partnership meeting. Chair Leykam suggested a first meeting by Zoom to see if there is interest for a subcommittee or workgroup. Dr. Kao would like to move forward by June. Ms. Schreiber will create a framework for moving forward. Federal Conflict Subcommittee – Jan Friedman, Dr. Mowry, and Ms. Janssen The plan at the April Board meeting was to have a plan for a final product for the May meeting. Due to the recent conflicts, the Director has not been able to address it. He reports there has been no update from the Federal Government. Director Steele will send a meeting invitation to the subcommittee as soon as possible. Dr. Mowry offered assistance if needed. Board Discussion Topics:

• Budget Reductions • Legislative Advocacy • Future Planning

Final comments and conclusion

• Director Steele will send Board members the CO training manual with adaptions. • Ms. Schreiber, Dr. Kao, and Ms. Stock will have a couple meetings and propose who,

what, and how. Dr. Kao will set up a Zoom meeting. • Dr. Kao will draft a letter to DHS regarding visitation restrictions and End of Life. • Ms. Schreiber suggested a thank you note to the Certified Ombudsmen. • Chair Leykam will write thank you letters to the two guests.

The meeting was adjourned at 11:46 a.m. Meeting documents and handouts are available and may be acquired by contacting Tami Hinshaw

at tami.hinshaw@oregon.gov.

OutlineofDirector’sReportforROPGABJune2020

AgencyupdatesduringCOVIDcrisis• Officeremains“closed”

o Dailystaffpresencestilloccurringo NowextendedthroughAugust31

• Budgetconcernsforcurrentbiennium

o May20revenueforecastshowed$2.7billionreductionincurrentbienniumfromlastforecast

o Currentplanistoaddressbudgetshortfallsaroundmid-July§ Reasonfordelay:Governor/LegislaturewaitingforanticipatedCongressionalactioninearlyJuly

§ SpecialLegislativeSessionannouncedtostartJune24,butwillfocusonpolicybillsprimarily(lawenforcementreformsandCOVIDissues)

o Currentmessagingisthatstateleadershipeffortingtoavoidlayoffs;cutswillbemadeelsewhere

o Notethat2021-23bienniumprojectionsshowinga$4.4billiondrop• MinimalPPE(masks,handsanitizerprimarily)providedfromstatesupplied

o AdditionalPPEwillneedtobeobtainedbyvendorofourowncontractingo PPEcleaningcompanysecured

2021Legislativeprep• AgencyRequestBudgetdueendofJuly

o “PolicyOptionPackages”(budgetaskpackagesfor2021)dueendofJune

Long Term Care Ombudsman Dashboard for June 2020 ROPGAB

Visits

Total: RCF/ALF: NF: AFH:

? ? ? ? Complaints Closed ?

Verified Complaints ? Resolution Rate of Closed Verified Complaints (?/?) ?

** Data since October 2019 continues to be unavailable at this time. Agreement to be signed this month (June 2020) for new vendor services.

Since last ROPGAB • Weekly complaint calls to 1-800# have increased from an approximate 70/week (pre-

COVID) to 90-100+/week. • Letter sent to Governor May 20 with recommendations, on behalf of LTC residents,

related to county re-openings. (see attached letter) • State LTCO presented to House Human Services and Senate Human Services regarding

issues residents facing with COVID-related restrictions in place. • Training being planned for early July for 12 trainees who began training in March, but

had training interrupted. Plan is to then train the additional individuals waiting to be trained (approximately 10 more).

• Next CE webinar for Certified Ombudsmen – with speaker Ann Fade, Deputy Ombudsman – scheduled for June 23.

• LTCO developing guidance for Deputies, and eventually COs, for return to visiting residents with limited interactions

• COVID impact in LTC by the numbers: • 103 deaths in licensed LTC (183 total; 56% of total deaths in LTC) – as of 6/17/20

• 102 residents; 1 staff; 8 additional from independent senior living • 12.3% (84 of 685 combined) of NFs/RCFs/ALFs have had a positive case (in total)

• 25.4% (33 of 130) of NFs • 9.2% (51 of 555) of RCFs/ALFs

• 1.1% (15 of 1,318) of APD-licensed AFHs have had a positive case (in total)

RFOUpdateROPGAB:6/19/2020

May2020

ExampleissuesforcallerssincelastROPGAB

o Choice-controlofscheduleandactivities(multiple-COVID-19related)o Provider-immediate/30daymoveout(multiple)o ConcernaboutothersbringingCOVID-19intohome(multiple)o Visitors–restrictions(COVID-19related)o Rights-Associateandcommunicatewithanypersontheresidentchooseso Rights–Privacyincommunication(multiple)o Family/legalinterference,conflicto Intimate/privatetimeo Controlofpersonalresources(multiple)o Accesstopromptmedicalserviceso Staffresponsivenessandavailability(multiple)o Choiceofresidence(multiple)o Change/removeguardiano Stafftraininginindividualsupportso Accesstofood,notenoughfood,restrictedfoodtimes,severelylimitedquantitiesandselection

o Abuse-verbalCallsforassistanceandcasesduringthisperiodarecharacterizedbyanincreaseinindividualreportingofretaliationanddescriptionsofverbalaggressionorthreats.PerspectivesfromafewRFOdeputies:

“Casesduringthistime(notbeingabletogetoutintothehomes)aremoredifficult.Itishardertomaintaintheconfidentialityofthereporterastherearefewerpeopleinandoutofthehomesthatarepotentialcandidates.Thismakesreportersreluctanttoreportissuesasretaliation,whileagainsttherules,doeshappenandthereislittlethatcanbedonetoaddressitatthistime.Italsotakesmanycallstogetissuesaddressed.”“TheimpactofCOVID–19fortheindividualsisincreasing.Oneindividualcallsmultipletimesperweek.Astimegoesby,thecallsgetlonger.Theissuesmoreurgentfortheindividual.Therequestforavisitispresentateverycallnow.Thisindividualreportsmoretroublingsymptoms.”

Callsforassistance(1-844)

47 Resultingcases/Investigations

37

CasesclosedMay 34 RemainingcasesopenasofMay31,2020

75

“…individualsarestrugglingwiththeon-linecounselingand[]withthetelemeddoctorappointmentsas[]physicalconditionisdeclining.”“…casesinMayasaresultofanMON.[]havebeenresolvedbymovingtoanotherhome.Moreindividualsareexpressingtheirdesiretobeoutinthecommunityagain.”

VolunteersForMay’smonthlymeeting,5CertifiedAmbassadorsattendedviaZoomforacollective5hours.Additionally,DeputieshavebeenconnectingwithouradministrativevolunteerweeklyviaFaceTime.PerDepartmentofHumanServicesandOregonHealthAuthorityCOVID-19guidelines,RFOAmbassadorscontinuedtoberestrictedfromvisitinghomesduringthisperiod.COVID-19TheRFOcontinuedtoparticipateintheAdvocateCoalitioncoordinatedbyDisabilityRightsOregonasthestatewideMassCare–generalthreat–groupcoordinatedbyacentralstateteamwasdisbandedduringthisperiod.DuringthemonthofApriltheAdvocateCoalitioncontinuedtoworkonmanyissuesincluding;move-outnotices,visitors/caregiversinhospitalsettings,fundingforcommunication/technologyforthosewithdisabilities(acrossresidentialandeducationalsettings),accessingmedicalcare/rationingofcareforthosewithdisabilities.DRO,RFO,LTCOandACLUjointlyauthoredarequesttoBehavioralHealth,IntellectualandDevelopmentalDisabilityandSeniorandphysicaldisabilitysystemswitharequestforactionrelatedtomoveoutnotices.RFOmetthismonthwiththeDROFieldAdvocatetoshareandcoordinatecrossissues.MultiplecaseshavebeenreferredtoDROasaresult.PhaseIre-openingManycountiesappliedforPhaseIreopeningstatusinthestateduringthemonthofMay.Whilecountiesmovedintothisphase,itisimportanttonotethattheI/DDandMentalHealthresidentialsystemsmaintainedthesamelevelofCOVID-19adoptedpoliciesinallareas(essentialstaff,restrictionofvisitors).OfprimaryfocusthismonthforRFOcontinuedworktheOHABehavioralhealthsystemincludingmove-outnotices,exitplansandcommunicationsofpolicy/practicetobothprovidersandcasemanagement(bothduringCOVIDandbeyond)regardingreviewofnotices.DuringthisperiodOHApublishedtheprocessforcentralreviewofmove-outnotices.

InadditionRFOcontinuedfocusonmultiplemethodsofoutreachtoincreaseknowledgeoftheprogramservices(initiatedapproachoftheMassCaregroup)duringtheCOVIDcrisis.Combined,RFOstaffparticipatedinthefollowinggroups,outreachortrainingsthismonth;SSIDuringthePandemic,ODDSStakeholderWebinar,FiveminuteinterviewKAJOLiveRadioJosephineCounty,OHAOmbuds,OregonHealthForum,COVIDWebinar,I/DDServiceWebinar(Children),Webinar:COVID&PersonCenteredCare.Outreach-RFOstaffprovidedinformationalpackets(activitybooks,posters,programinformation)inresponseto25requestsbyindividuals.RFOcontinuestoworkwithindividualcasesandattemptingtoresolveissuesviaphone.Someindividualsand/orissuescannotbeinvestigatedorresolvedinthismanner.Theanticipatedback-logofhomevisitstoconductinordertorespondtocurrentcomplaintswhenvisitsbecomeappropriatecontinuestogrow.

As of 5/2020: No new activity noted in this area due to COVID-19 restrictions

OregonPublicGuardianandConservatorProgramUpdateAsofJune1st,2020

NotesGuardianships&Conservatorships

FunctionalCapacity 87 (NumberofdeputyFTEx20)+NumbertransferredtoSCCC=(4x20)+7=87

AppointedClients 86 AssessmentsinProgress 0 Acceptednotyetappointed 1

Caseload 87 Waitlist <10

OPGChasbeenfollowinguponallcasesonthewaitlist

AssessmentsCompleted 3 All3acceptedforguardianship.

Lessrestrictivealternative,orfamilymemberidentifiedtobeguardian

0

Petitionsfiled 4 Petitionsgranted 3 Petitionspending 1 Petitionsdenied 0 Closed 0 TransferredtoSCCCC 0 ManagedbySCCC 7 OneclientmanagedbySCCChaspassedaway,the

caseloadwilldropto6assoonasthefinalreportisfiled.

HighRiskTeams Teams 8 Mid-Valley(currentlyonholdduetolackof

participation/cases),Lane,Deschutes,Clackamas,Umatilla,Klamath,Crook,Jefferson

ROPGAB–June19th,2020–OPGCupdateoutline

1. ChangesinOPGCsincelastROPGAB• OPGChasbeenfollowinguponallcasesonthewaitlist,somedatingbackasfarasJanuary2019.

o 40Casesremovedsofarfromwaitlistthroughthisfollow-up,lessthan10remaining.o Datafromoutcomeswillbecompiledwhenallfollow-upiscompleted.o Newwaitlistofhospitalcaseshasbeenstarted(2)SouthernOR,(2)inWesternOR,(0)Eastern

OR.

2. OPGCsuccessinpastmonth.• PositivesupportfromSen.Prozanski.OLTCO/OPGCwillworkwithSenateJudiciarylegcouncilona

packagefor2021toincreaseOPGCcapacitywithafocusondivertinghighlyvulnerableincapacitatedindividualsfromthe.370processwhencurrentlyinthecycleofhomelessness/jail/OSH/localhospitalization.

3. Barriersinthepastmonth• Beingatfullcaseloadcapacitywillcontinuetobethebiggestongoingbarrierfortheprogram.

ROPGAB: Office of the Long-Term Care Ombudsman Natascha Cronin and Carole Sebens, Recruitment Specialists

RECRUITMENT ACTIVITY REPORT – MAY 2020

LTCO 2020 R&S Volunteers = 20 SMP Volunteers = 23 New Volunteers Certified = 0 Certified Ombudsman Resigned = 0 New Applications = 2 Volunteer Inquiries to date = 101 LTCO Certified Ombudsman = 157 District 101 = 23 District 106 = 13 District 102 = 32 District 107 = 9 District 103 = 15 District 108 = 14 District 104 = 26 District 109 = 7 District 105 = 18

RFO 2020 New Volunteers Certified = 0 Volunteers Resigned = 0 New Applications = 0 Volunteer Inquiries to date = 4 RFO Ambassadors = 8 Office Volunteer = 1

RECRUITMENT ACTIVITY REPORT – MAY 2019

LTCO 2019 R&S Volunteers = 15 SMP Volunteers = 27 New Volunteers Certified = 4 Certified Ombudsman Resigned = 6 New Applications LTCO = 8 Volunteer Inquiries to date = 158 Certified Ombudsman = 146 District 101 = 27 District 104 = 29 District 102 = 35 District 105 = 22 District 103 = 16 District 106 = 17

RFO 2019 New Volunteers Certified = 0 Certified Ombudsman Resigned = 0 New Applications = 2 Volunteer Inquiries to date 2019 = 11

VOLUNTEER RECRUITMENT & OUTREACH ACTIVITIES May 2020

LTCO Actual completed events are in black. Cancelled or postponed events are in red. There would traditionally be multiple events in May, but most that would happen during this time were cancelled earlier so we have much fewer “red” events. District 1 5/18/20 Clackamas, Coos, Jackson, Multnomah R&S (Zoom) District 2 5/1/20 News Release on Azalea project sent to Oregonian, Portland Tribune, and Valley Times. 5/4/20 Washington County R&S (Zoom) 5/12/20 Oregon Live article published on Azalea project District 3 5/18/20 Clackamas, Coos, Jackson, Multnomah R&S (Zoom) District 4 District 5 5/18/20 Clackamas, Coos, Jackson, Multnomah R&S (Zoom) 5/18/20 Operation Stop Scams – World of Speed (cancelled/postponed) District 6 District 7 5/13/20 Marion R&S Meeting (Zoom) 5/27/20 Senior Services Meeting (Zoom) District 8 District 9 Statewide Training Event (SWTE) (postponed until October) Statewide 5/1/20 Recorded webinar available for feedback

• Worked on LTCO volunteer training • Worked on Agency website • Created a plan for use of CARES Act money • Enrolled and participated in numerous webinars

• Provided three LTCO Open House webinars • Frequent Facebook posts

RFO • Online Recruitment sites updated • Entering resources and contacts in database (LTCO and RFO) • Send suggested articles for posting on Facebook • 5/6/20 Grants Pass Chamber Greeters (Carol Files on radio KAJO live 5/21/20) • Strategic Work Plan ongoing development • Emails sent to multiple Grants Pass service organizations • MOU discussions with UCAN/RSVP Josephine/Douglas

OPG 5/31/20 Forwarded resume of possible volunteer to program

The COVID-19 pandemic continues to create additional challenges for people living with dementia, their families and caregivers. These challenges are particularly being felt in long-term care settings. Indeed, nursing homes and assisted living communities are on the frontlines of the COVID-19 crisis, where 48% of nursing home residents are living with dementia, and 42% of residents in residential care facilities, including assisted living communities, have Alzheimer’s or another dementia.

Residents with dementia are particularly susceptible to COVID-19 due to their typical age, their significantly increased likelihood of coexisting chronic conditions, and the community nature of these settings.

Our nation has not done enough to support these communities. Across the country these facilities, their staff, and their residents are experiencing a crisis due to a lack of transparency, an inability to access the necessary testing, inaccurate reporting and more. As of early May, it was estimated that more than 20,000 of COVID-19 related deaths were traced back to nursing homes around the country.

The Alzheimer’s Association is urging state and federal policymakers to implement new policy solutions which will address the immediate and long term issues impacting care facilities during the COVID-19 pandemic.

TESTING: Each nursing home and assisted living community must have the onsite capability to verify that all residents, staff and visitors are free of COVID-19 infection, whether or not they are symptomatic. In short, access to testing should be the “White House Standard.” Government support is needed to ensure accelerated production and delivery of testing, with rapid turnaround testing staffed by trained personnel.

» Establish and implement a protocol to use testing to verify, as a baseline, that residents and staff of eachfacility are free of infection.

» As an essential component of establishing a baseline assessment, immediately prioritize access totesting supplies for nursing homes and assisted living communities and require that all residents andstaff be tested.

» Purchase, deliver and provide training in the proper use of commercially available, rapid point of careCOVID-19 testing.

» Thereafter, implement daily testing for all new individuals who come onsite, and retesting for returningindividuals who enter the facility, in accordance with local guidance.

REPORTING: All cases of COVID-19 at nursing homes and assisted living communities need to be reported immediately and accurately. Additionally, these reports should be updated upon remission, death, transfer or other appropriate status update. With all appropriate privacy safeguards for individuals, this reported data should be freely and immediately accessible to all down to the facility level.

» Require all nursing homes and assisted living communities to report positive diagnoses to public health authorities immediately (never later than same day), update previously reported cases upon significant changes in status, and proactively notify family and/or designated persons of changes.

» Protect the privacy of individuals, but do not tolerate this as an excuse to delay implementation of this expectation. These issues can be reasonably addressed.

» Create a central, publicly accessible web platform that is searchable down to the facility level to make deidentified data available immediately upon reporting. No lag between reporting and publication is needed or tolerable.

MAY 2020alz.org/covid19help | 800.272.3900 | alzimpact.org

Improving the State and Federal Response to COVID-19 in Long-Term Care Settings

Alzheimer’s Association Policy Recommendations

SURGE ACTIVATION: As “hot spots” occur, they must be dealt with urgently and effectively. Any reported cases should trigger careful, ongoing monitoring and, if conditions warrant, “strike teams” will be employed to the facility to provide needed support until the outbreak is appropriately contained and eliminated.

» Designate state Long-Term Care Ombudsman and state and federal CMS Surveyors as “essential,”ensure they have priority access to PPE, and authorize them to visit long-term care communities.

» Establish a protocol for what steps nursing homes and assisted living communities must take once aresident or staff member tests positive for COVID-19 and require that this protocol is implemented bythe care provider.

» Require nursing homes and assisted living communities to implement a care coordination protocol thatensures a smooth transition between care settings if a resident must be moved to another care setting.

» Activate statewide strike teams to help nursing homes and assisted living communities that are identifiedas “hot spots” and in need of additional support.

PROVIDING SUPPORT: All nursing homes and assisted living communities must have full access to all needed PPE, testing equipment, training and external support to keep them COVID-19 free.

» Immediately prioritize access to PPE for all staff in nursing homes and assisted living communities.These facilities should be given access to an adequate, ongoing supply.

» Require dissemination of essential dementia care standards to aid provisional staff in the delivery ofperson-centered dementia care.

» Require the use of personal information forms for each resident to allow all staff to quickly identifyessential information about the person to help maintain a stable and comforting environment.

» Require nursing homes and assisted living communities to address social isolation and ensure peoplewith dementia are able to communicate with designated family/friends.

» Direct the state department of health to establish and administer a Statewide Long-Term CareEmergency Response Task Force to coordinate with all key stakeholders to identify pressing issues andimplement solutions.

MAY 2020alz.org/covid19help | 800.272.3900 | alzimpact.org

Caregiver Workforce subcommittee Activities since last ROPGAB meeting Sherry, Susan, Helen 5/22 meeting summary: reviewed our broad goals. Began identifying areas of interest and personal connections among the 3 of us. Discussed personal stories/cases with impact. Action plan: Sherry to send out feelers to experts and leaders she knows, Susan to talk to Fred, Helen to talk to Kyndall Mason 6/5 meeting summary: (Susan unavailable) Sherry discussed potential leaders she has talked to who have expressed interest. Helen reviewed discussion with Kyndall re: possible strategies (one large bill will all desired changes or multiple smaller/individual bills so that if there is any resistance, they don’t all go down in flames), also starting with changes which are as “cost-neutral” as possible given economic situation and state budget due to covid. Helen and Kyndall discussed legislators who are likely supporters of caregiver workforce issues but hesitant to meet with labor. 6/16-6/17 email exchange of updates.

• Helen draft letter sent to ROPGAB for review • Helen to set up legislator meetings once we have ‘cases/stories’ for their district from Ombuds

office: Greg Smith, Cheri Helt, Caddy McKeown, Janelle Bynum, Teresa Alonso-Leon • Susan summary of discussion w Fred: will get 1-2 cases from each district of identified legislators

(de-identified) week of 6/22 • Sherry summary of discussions w her contacts (Carol Altman, Tim Knopp, Fred Girard and

Steiner-Hayward)

1 2020 Alzheimer’s Association®. All rights reserved. 800.272.3900 | alz.org

Emergency Preparedness: Caring for persons living with dementia in a long-term or community-based care setting

Emergency situations, such as the current COVID-19 pandemic, present special circumstances in the delivery of care in long-term and community-based care settings. People receiving care or utilizing services in these settings are particularly vulnerable to complications due to their age and other concurrent medical conditions. Employees can also be affected in emergency situations. Maintaining operations in long-term and community-based care settings with the expected staffing shortages during any pandemic, epidemic or disaster can be very challenging. During this time, non-clinical staff may be needed to assist with care. As indicated in the Alzheimer’s Association 2020 Alzheimer’s Disease Facts & Figures, more than 5 million Americans age 65 and older are living with Alzheimer’s dementia in 2020. People with Alzheimer’s or other dementia make up a large proportion of all elderly people who receive long-term and community-based care. Overall, 48% of nursing home residents are living with Alzheimer's or other dementias. Among older adults in residential care settings, including assisted living, 42% or more have some form of Alzheimer’s or other dementias. Many individuals with Alzheimer’s or other dementias receive community-based services: 32% of individuals use home health services and 31% use adult day services. Dementia is characterized by a group of symptoms that include a decline in cognitive abilities, loss of memory, poor judgment, changes in personality, disorientation and problems with abstract thinking. Alzheimer’s disease is the most common cause of dementia, accounting for 60% to 80% of all cases. As the disease progresses, people living with dementia will need additional assistance to complete activities of daily living. Due to their decreased cognitive ability, they may require additional assistance and consideration during the implementation of an emergency plan.

PREVENTING ILLNESS Persons living with dementia may have an impaired ability to follow or remember instructions, and may need reminders regarding:

• Hand-washing and moisturizing - consider a supervised hand-washing schedule. • Covering nose and mouth during a sneeze or cough. • Refraining from placing things in the mouth. • Staying in a particular area. • Taking medications appropriately. • Adopting social distancing practices and refraining from sharing items. • Following any other procedures that would require memory and judgment.

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2020 Alzheimer’s Association®. All rights reserved. 800.272.3900 | alz.org

Tips for supporting persons living with dementia in long-term and community-based care settings

People living with dementia may become more confused, frustrated or even display an increase in dementia-related behaviors during a crisis. Individuals are often less able to adapt to changes in their environment, and may react to others’ stress. It is recommended to try to minimize any changes in routine, environment and daily structure for individuals with dementia. Below are some suggestions to meet the needs of persons living with dementia during a major disease outbreak or disaster:

PROVIDE PERSON-CENTERED CARE As stated in the Alzheimer’s Association Dementia Care Practice Recommendations, one of the most important steps in providing quality dementia care is to know the person. In the event of a major disease outbreak or disaster, this may be more difficult for temporary staff members or those working in a new department or other health care setting. A nurse, or social worker or staff under the supervision of licensed clinicians should complete a personal information form, or use an existing one, and place it a visible location consistent with HIPAA guidelines. For example, documents can be placed inside a closet door or in a folder attached to the back of a door. This will allow all staff, including temporary or substitute staff members to quickly identify essential information about the person to help maintain a stable and comforting environment. Information on the form can include:

• Individual’s preferred name (and pronouns). • Cultural background. • Names of family and friends. • Past hobbies and interests. • Sleep habits. • What upsets the person. • What calms him or her down. • Typical patterns of behavior. • Normal daily structure and routines. • Eating and drinking patterns and abilities. • Religious or spiritual practices. • Remaining abilities, motor skills, verbal processing and communication abilities and methods.

Sharing information about a person with the care team is very important in terms of providing quality, consistent and effective care. Given the care team may change frequently during a pandemic or disaster, briefing meetings at the start of the shift will allow the staff to share pertinent information about those receiving care.

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2020 Alzheimer’s Association®. All rights reserved. 800.272.3900 | alz.org

Advance planning Planning for the future is an important part of person-centered care. Advance planning is important to ensure an individual’s wishes regarding treatment and care options are fulfilled.

• Be aware of a person’s advance directives and ensure they follow the person if a transfer is necessary. • Ensuring individuals’ advance directives, Provider Orders for Life-Sustaining Treatment (POLST), and

other documents are all up to date with current documented wishes, and physician orders are consistent with these wishes.

HELP KEEP FAMILIES AND FRIENDS CONNECTED People living with dementia may need help communicating with their families and loved ones during a crisis. For example, for persons with dementia living in a residential care setting, families might schedule a telephone or video call to keep connected and/or send notes for the person to read along with photos. Providers should consider developing a “What You Should Know” fact sheet to explain what families and friends and staff need to know in the event of an emergency. It should include information on how families can receive updates or talk to a care provider about the person living with dementia. It is also important to note what adaptive devices are necessary and available for the individual, e.g., hearing aids and eyeglasses. Remember that each family is unique, and for some people their closest supporters may not be biological or legal family members, but friends or community members.

ASSIST WITH EATING AND DRINKING Persons living with dementia may need assistance with eating and drinking. This may include use of verbal, visual or tactile cues, such as high contrast dinnerware, adaptive utensils, graded approaches and modeling behavior. It is especially important for people with dementia to maintain their strength when there is risk of contracting a virus. Staff should familiarize themselves with the person’s eating and drinking patterns and abilities. They may need to be reminded or prompted to drink and eat as they might not be able to recognize hunger or thirst. Sitting and talking with the person with dementia during meal times may improve intake. Any evidence of difficulty in swallowing should be assessed by appropriately licensed clinical staff. Licensed or trained personnel should assist and monitor all persons with dementia who have been identified as having a choking risk or a history of swallowing difficulties. MONITOR WALKING/UNSAFE WANDERING Walking is a purposeful motor activity that promotes mobility and strength building. Unsafe wandering occurs when a person living with dementia gets lost, intrudes into inappropriate places or leaves a safe environment. The risk for unsafe wandering may increase when the person becomes upset, agitated or faces stressful situations. Possible interventions include:

• Provide persons with dementia safe spaces to walk about. • Secure the perimeter of areas, if possible. • Ensure that persons with dementia get regular exercise. • Provide structured activities throughout the day. • Spending time outdoors in a safe environment.

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OBSERVE AND RESPOND TO DEMENTIA-RELATED BEHAVIORS Behavior is a form of nonverbal communication for the person living with dementia. Dementia-related behaviors may be the best option or response for a person living with dementia to communicate a feeling, unmet need or intention. These behaviors are triggered by the interaction between the individual and his or her social and physical environment. A response may include striking out, screaming, or becoming very agitated or emotional. The care provider’s role is to observe and attempt to understand what the person living with dementia is trying to communicate. It is useful to attempt to identify the root cause of the behavior. Potential causes of dementia-related behaviors are as follows:

• Pain. • Hunger. • Fear. • Depression. • Frustration. • Loneliness, helplessness, boredom. • Hallucinations. • Overstimulation. • Changes in environment or routine. • Difficulty understanding or misinterpreting the environment. • Difficulty expressing thoughts or feelings. • Unfamiliarity with personal protective equipment or clothing, such as gowns or masks.

Strategies to observe and respond to dementia-related behaviors include:

• Rule out pain, thirst, hunger or the need to use the bathroom as a source of agitation. • Speak in a calm low-pitched voice. • Try to reduce excess stimulation. • Ask others what works for them. • Validate the individual’s emotions, e.g., focus on the feelings, not necessarily the content of what the

person is saying. Sometimes the emotions are more important than what is said. Look for the feelings behind the words. Affirming the person’s feelings may help calm them.

• Understand that the individual may be expressing thoughts and feelings from their own reality, which may differ from generally acknowledged reality. They may be reacting to an event from their past. Offering reassurance and understanding, without challenging their words, can be effective.

• Through behavioral observation and attempted interventions, try to determine what helps meet the person’s needs and include the information in the individualized plan of care.

• Be aware of past traumas (veterans, abuse survivors, survivors of large scale natural and human-caused disasters)

• Never physically force the person to do something. Additional strategies and interventions may include:

• Offering a favorite food. • Sharing photographs of family and friends. • Listening to familiar music. • Using an evidence-based therapy, such as aroma, bright light, validation, reminiscence, music or pet. • Looking through books or magazines.

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• Exercising or taking a walk. • Providing purposeful tasks to be helpful. • Connecting with family and friends using applications like Skype, FaceTime or other technology. • Using technology applications to deliver individual and small group activities. • Using relaxation techniques, such as deep breathing. • Supporting their spiritual needs. • Providing a warm blanket or placing a cool cloth on their neck or forehead. • Talking to particular staff or a special person. • Moving the person to a quiet area; consider having rocking chairs available.

If non-pharmacological practices are not effective after they have been used consistently, then medications may be appropriate when individuals living with dementia have severe symptoms or have the potential to harm themselves or others. Continued need for pharmacological treatment should be reassessed as required by the medication regimen or upon a change in the person’s condition.

It can be difficult to anticipate and respond to dementia-related behaviors in a changing environment; however, applying some of the following strategies may help:

• Provide a consistent routine. • Use person-centered care approaches for all individuals living with dementia during activities of

daily living — every interaction or task is an opportunity for engagement. • Promote sharing of person-centered information across the care team. • Encourage all staff to treat individuals living with dementia with dignity and respect. • Put the person before the task.

Crises can be challenging, especially for individuals living with dementia. With some careful planning and attention to the unique needs of those receiving care, professionals may feel more empowered to respond quickly and appropriately to support individuals living with dementia. ALZHEIMER’S ASSOCIATION RESOURCES 24/7 Helpline (800.272.3900) The Alzheimer’s Association 24/7 Helpline partners with our chapter network across the United States to provide around-the-clock support and information to people with Alzheimer’s and other dementias, family members, caregivers, health care professionals and the general public. alz.org The Alzheimer’s Association website offers a wealth of resources and information for people living with the disease, caregivers and health care professionals. For additional information, contact: Beth Kallmyer Vice President, Care and Support bkallmyer@alz.org Doug Pace Director, Mission Partnerships dpace@alz.org

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CDC COVID-19 RESOURCES: GUIDANCE FOR RETIREMENT COMMUNITIES AND INDEPENDENT LIVING

• Guidance for Retirement Communities and Independent Living: https://www.cdc.gov/coronavirus/2019-ncov/community/retirement/index.html

• Preventing the Spread of COVID-19 in Retirement Communities and Independent Living Facilities (Interim Guidance): https://www.cdc.gov/coronavirus/2019-ncov/community/retirement/guidance-retirement-response.html

• Coronavirus disease 2019 (COVID-19) Checklist: Older Persons: https://www.cdc.gov/coronavirus/2019-ncov/community/retirement/checklist.html

Note: This document is designed as a reference to support all staff, including non-licensed staff and lay people who may become involved in direct care during a major disease outbreak or disaster. These are suggestions for quality care. It may be unrealistic to expect all items to be carried out in an emergency or disaster situation. This document is not a substitute for evidence-based training on how to care for persons living with dementia in long-term and community-based care settings.

PRESENTED IN COLLABORATION WITH:

June XX, 2020 To Governor Brown, House Committee on Human Services and Housing, Senate Committee on Human Services, House Business and Labor Committee, Senate Committee on Labor and Business, and Department of Human Services, We are writing on behalf of the Oregon Long Term Care Ombudsman’s Residential Ombudsman and Public Guardianship Advisory Board (ROPGAB) to advocate for fundamental changes to Oregon laws governing long term care facilities, and enhanced support of frontline caregivers, so that Oregonians in long term care facilities need not suffer needlessly. With long term care facilities across the country turning up as Covid hot spots, scrutiny has highlighted the many cracks in long term care infrastructure, in particular the inadequacy of caregiver staffing, education, and supports to enable these frontline heroes to safely and comprehensively care for facility residents’ needs. State orders to facilities meant to protect residents and staff are having unintended consequences as facilities have eliminated visitors, group meals, and activities. We are seeing cases of irreparable harm to residents due to caregiver staffing shortages, inadequate education, and lack of testing and PPE. These are but a small sampling of the consequences long term care facility residents are suffering due to an under-resourced caregiver workforce:

• imprisonment—a resident suffered decompensation of her depression and anxiety when told she could not open the window to her room, nor could she sit outside in the courtyard except for 15min a day with a staff escort

• weight loss--residents suddenly losing weight because facilities normally relied on family help or fed 3-4 residents with one caregiver around a table; but have not increased staffing to account for residents who now requiring individual feeding support in their separate rooms (residents have died due to this)

• dehydration--residents with dementia, stroke, brain injury, and other conditions are not offered fluids or assisted with drinking because of short-staffing and caregivers lacking the resident-specific strategies to cue and assist someone with drinking; and family members who normally provided this support have been blocked (residents have died due to this)

• pressure sores--residents are being confined to a chair or bed for longer periods of time, and not given opportunities to walk or exercise (residents have died due to this)

This is all on top of the human and emotional deprivation residents face by not being allowed to have loved ones visit. As one resident put it, his wife of over 60 years has been the one thing he continues to live for, “If I can’t see my wife, I may as well die.” We understand the public health implications of coronavirus transmission and efforts to limit spread in population-dense settings with older and health-compromised adults. But if we are not thoughtful about how we address long term care, we may see more Oregonians suffer and die from our response to Covid, not to Covid itself. It is not sufficient to close off facilities without distributing resources to them to protect residents:

• ensuring LTC facilities receive prioritization for PPE on par with hospitals (not just medical masks and gloves, but gowns and N95 masks)

• enforcing and enhancing adequate (during Covid this necessitates increased) staffing levels so that caregivers have adequate time to provide the time-intensive care residents need when

group meals and activities have ceased; as well as, importantly, to have adequate time for hand hygiene and donning-doffing PPE

• requiring Covid testing in long term care facilities to identify cases early, reduce spread among the caregiver workforce and residents, and relax burdensome restrictions on those residents who are negative

• providing tablets or similar devices (eg. through Quality Care Funds, CARES Act funds, and/or partnership with Oregon Health Care Association or tech companies based in Oregon) at a recommended one device per 7-10 residents so caregivers can help their residents connect with family and friends without using their personal device

• establishing high-quality, evidence-based educational standards for caregivers with opportunities for career development and growth (to support caregiver retention and career advancement)

• requiring facilities to demonstrate that they have the staffing and caregiver education to take on personal care tasks which have been provided by family members, or by home health and hospice aides (if the facility is restricting aide visits)

• ensuring caregivers are entitled to a living wage, pandemic hazard pay, and paid time off/sick leave

The Covid pandemic is testing our humanity. We rely on long term care facilities and the caregiver workforce to care for Oregonians who need support. Yet problems highlighted by Covid show systemic bias against people of older age or with disabilities, and against low-income (often female and immigrant) caregivers. We believe some interventions can be made relatively quickly with resource commitment (PPE, testing, communication devices). For more structural changes, ROPGAB is asking for leaders to join us in a caregiver workforce coalition to put forth policy changes for the 2021 legislative session. The status quo in the long term care industry was weak on resident and caregiver protections to begin with. But solutions are available and possible if we are willing to make changes. Sincerely, Helen Kao, MD Susan Schreiber, MA Sherry Stock, ABD-PhD ROPGAB ROGAB ROPGAB