n May 19th, the New York State Assembly Committee on Health, under Assemblyman Richard Gottfried, held hearings to examine the role of the Department of Health (DOH) in exercising oversight over the nursing home industry in New York State. The Committee requested testimony on the following issues: · What is DOH doing to ensure there is an adequate and effective oversight system? · How effective is DOH in identifying serious and systematic problems? · What are the obstacles to DOH’s ability to improve its effectiveness once problems have been identified? · What is the experience of consumers dealing with the DOH complaint survey system? FRIA Executive Director, Amy Paul and Helpline Director, Amy Torres presented testimony recounting numerous instances when the DOH was asked to investigate a complaint against a nursing home and failed to conduct the investigation thoroughly. FRIA staff was accompanied by caregiver Lisa Jackson, a prior Helpline caller who recently joined FRIA’s Board. Ms. Jackson gave a first hand account of her problems with DOH’s complaint investigation process. FRIA’s testimony called for DOH administrators to demonstrate new leadership to protect residents and caregivers. FRIA cited the need to change the following: · Failure to make an on-site investigation, · Failure to speak to a caregiver or resident directly to better understand the complaint, · Failure to respond in a timely manner, · Predisposition toward believing the nursing home’s account of an incident, · Citing homes for lesser problems when in fact important procedures were not followed, · Concluding ‘no significant harm’ has resulted from incidents when people have died. FRIA has called upon the Committee to press DOH to improve its proceedures. Ms. Paul added, “The one agency entrusted with safeguarding long term care disappoints consumers time and again…We need a commitment from our government to better safeguard those living in nursing homes… FRIA stands ready to help DOH develop a more responsive approach to long term care concerns.” We urge you to write to the Committee with your experience: Hon. Richard Gottfried, FRIAIsAnIndependentNon-ProfitOrganizationDedicatedToImprovingLong-TermHealthCareInNewYorkStateSince1976JoinUs! FRIAGoestoBroadwayWith DenzelWashingtonIn JuliusCaesarThursday,June9,2005 8PMTheBelascoTheater111 West44th St.,NYC$175 PerPerson ($73.50 tax deductible) Call212-732-5667 forinfo. JoiningFRIAattheStateAssemblyHearingonHealth, were(1st row left-right) Bea Close, Board Member; Shirley Genn, Caregiver; Lisa Jackson, Board Member; Amy Paul, Executive Director; Amy Torres, Helpline Director; Randi Blom, Helpline Counselor; and Jessica Her old, F amily Adv oc ac y Coordinator; 2nd row center: Ethel Paley, Board Member Helpline Counselor and Executive Director. TestifyingforFRIAwere(left to right): Amy Torres, Amy Paul, and Lisa Jackson FriendsandRelativesofInstitutionalizedAged NEW YORK STATE LEGISLATIVE NEWS FAMILY COUNCIL LAW IS ENACTED Kudos to Family Council leader Harry Kornblau who was the moving force behind the recently adopted Family Council law, supported by FRIA. The new NYS law requires nursing homes to protect the establishment and operation of Family Councils. Previously, facilities were required to provide a private meeting space for Council meetings, designate staff to provide the Council with assistance, and respond to written requests that result from group meetings. Under the new law, these rights are significantly expanded. Nursing homes must now allow the Councils to meet in a common room of the facility, in private and without facility staff, at least once per month, during mutually agreed upon hours. Councils must be given space on a prominent bulletin board or other posting area to display their announcements. Nursing homes may not prohibit the formation of a family council and may not prohibit members to meeting independently with outside persons or with facility personnel during non-working hours. Where a council exists, the nursing home must include notice of the council meetings in at least a quarterly mailing. In addition, the nursing home must inform family or representatives of new residents of the existence of the family council including the time, place and date of the meetings and name of a council person to contact. Most importantly, the law states no nursing home shall willfully interfere with the formation, maintenance or promotion of a Family Council. The term willful interference includes discrimination or retaliation against an individual due to participation in a Council. Nursing homes are also prohibited from scheduling facility events in conflict with scheduled Family Council meetings. A violation of this law constitutes a violation of resident rights and is subject to a fine. The Department of Health (DOH) sent a letter to all nursing homes in New York State to advise them both of their responsibilities and the rights of Family Councils. Please contact FRIA if you have any questions and, certainly, if you experience any restrictions, discrimination or retaliation which you believe is connected to your participation in a Council. We need to work together to see that the law is enforced appropriately. ASSISTED LIVING LAW IS ENACTED NYS has passed an important new law which offers protections to residents of assisted living facilities. The law establishes a Bill of Rights for residents, ensuring that they retain the option of managing their own affairs. Before a facility can admit someone, it must evaluate his or her needs. If 24 hour skilled nursing is required the facility may not admit him/her unless the person retains and pays for a personal aide. If, while living in the facility, a person develops the need for 24 hour skilled care, he or she can only stay there (and presumably age in place), if a personal aide is paid for by the resident. The new law requires an Assisted Living facility to give each resident an individual service plan to be updated at least every six months. The plan must state what services will be provided and by whom. All contracts must use "plain language" which fully discloses services, fees and policies. The law also requires that Assisted Living facilities be licensed by the State. If a facility offers a broad range of services it must obtain an ‘Enhanced Assisted Living Certificate’ and meet the requirements for such a facility. If a facility offers services for persons with Alzheimers or similar dementias, then it must first qualify for and obtain a Special Needs certificate. All facilities seeking assisted living licensure must submit a plan to DOH describing the levels and skills of their staffs and the specific services offered to residents. `State health officials will be required to inspect the facilities every 18 months. Penalties for violation of the law will be imposed. FAMILY HEALTH CARE DECISIONS ACT–awaiting action Under NYS law, there is no legal basis for a family member to make health care decisions for an incapacitated relative, absent a health care proxy. Although hospitals and nursing homes may informally include family in these decisions they do not have a legal basis to do so and in some situations, such as in nursing homes, medical providers may find it more convenient to not involve caregivers and make decisions on their own. A bill has been introduced in the NYS legislature for the past nine years to recognize the rights of family to have a say in an incapacitated member’s health decisions. This year, Representative Gottfried has sponsored such a bill; Senator Seward has introduced a different version of the bill. We will keep you posted on the progress of these bills but in the meantime, we encourage you to write to your legislator urging adoption of the Family Health Care Decision Making Act. And, secure Health Care Proxies for all family members. Mindyou,IgotmyHealthCareProxybeforeitwastrendy...thanksto Weareverypleasedtoannouncetheappointmentof AmyT.PaulasFRIA’snewExecutiveDirector,effectiveMarch 28th. Amyisan attorneywhobegan hercareerspecializingin consumerprotection forTheHertzCorporation.AtMasterCardInternational,shewasVicePresidentandCorporateSecretary,andheadeditsGovernmentRelationspractice. Sheswitchedcareersandenteredthenon-profitworldworkingforadomesticviolenceadvocacyagencyastheorganization’sfirstDirectorof Development.Asdevelopmentsucceeded,shewaspromotedtoAssociateDirector.Forovertwentyyears,Amyhasbeen an energeticcommunityactivist,workingon manysocialjusticeissues. Enthusiasticabouthernewappointment,Amysays:“I amproudtobepartof FRIA’slong-standingtradition of providinginformation andadvocacy,ledbyan outstandingBoardof Directorsandstaff.In lightof recentproposalsin thelongtermcaresystem,FRIAmustkeep itsfocuson speakingoutforreform,louderandstrongerthan everbefore,andinspirethecommunitytojoin in thisurgentwork.I amcommittedtodoingmybesttoupholdFRIA’smission.” FederalMedicare&MedicaidUpdateheUSgovernmentpassedtheMedicareModernization Actof 2003,amongotherreasonstoprovideadrugplan benefitforseniors.TheActiscomplicatedandshouldbecarefullyread.Forthosewhoareenrolledin both MedicareandMedicaid(dualeligible), asmanynursinghomeresidentsare,therearespecialprovisionstonote: · Each dualeligibleseniorwillneedtomakeadrugplan selection nolaterthan January1,2006. · Drugplanswillprovideinformation toseniorsaboutwhich drugswillbeoffered. · If aseniordoesnotmakeaselection bytheJanuarydeadline,thegovernmentwillrandomlyassign theseniortoadrugplan,with noconsideration astowhetherthesenior’sdrugsarecoveredbytheplan.However,drugplanswillberequiredtooffermanycategoriesof medicines. SeniorsmustalsobeawarethatPlanscan changeduringtheyearsoitwillbeimportanttovigilantlyreadPlan noticestoensurethatnecessarymedicinescontinuetobecoveredin theSenior’sPlan. Manyaspectsof thisbenefithaveyettobedefined.FRIAwillkeep you abreastof developmentsin thisarea.  FRIAwouldliketoacknowledge2005 donationsInMemoryOf: PaulaClarkeBenjaminDoofLillieJacksonMartinaCurryGeorgeDolinerPatVealeIrvingJ.MintzerAuntHelen  InHonorOf: GrandmaGoldsteinRuth&EdFriedson  FRIANEEDSYOURHELPYourgift—whatevertheamountcanmakearealdifference. FRIAdoesnotacceptfundingfromNursinghomessowedependonyou,ourpublic,tosupportourservices. Pleaseconsidermakingatax-deductibledonationtodayThankyoutoallourdonorsfortheirkindgenerosity. FamilyCouncilNews Family Council Manual FRIA is expanding, revising and reorganizing the content of our Family & Friends Council Manual to better serve you, thanks to funding from The Commonwealth Fund. The Manual will support and guide seasoned advocates continuing to provide a framework of manageable tasks for new leaders. The Manual will include sections written by family council leaders and sample materials from family councils. NEXT MEETING: FRIA’s next Leadership Training Meeting will be held June 8th in Manhattan, 6-8 pm. Please join FRIA staff and family council leaders for two hours of strategizing, networking and support. Contact Jessica Herold at 212 732-5667 or email at jherold@fria.org for information. e-Community: FRIA is working to enhance communications among family council leaders and make information more accessible. FRIA’s Family & Friends Council e-community forum provides leaders with legislation, policy and regulation updates as well as information about upcoming events. To be added to this listserve please contact ffec@fria.org. 1– Haveyou orsomeoneyou’veknown experiencedanyproblemswith thenursinghomeaftercriticizingorcomplainingaboutthecarearesidentwasreceiving? ___No___Yes: (ifyes,indicatethefollowing) ___Frequently__Occasionally___OncePleaseexplain_____________________ _____________________ __________________________________________________ 2– Checkthoseactionsthatthefacilityorstaffhastaken againstyou oranotherperson inresponsetoacriticismorcomplaintlodgedaboutcareortheadministration ofthefacility. ___Limitsplacedon familycouncilmeeting___Limitsplacedon visits___Careofresidentneglected/ diminished___Excludedfromhealth caredecisions___Other_____________ TellFRIA...WeCarePleasehelp us.Telluswhatyou haveexperiencedorhaveseen othersexperiencein nursinghomes.Pleasetakeamomenttocompletethissection andreturn tousatFRIA,18JohnSt.,Suite905,NewYork,NY10038,Attn:Jessica.Thankyou.(Checkallthatapply). Pleaseprovide(optional)pleaseprintName:_______________________________________________ Phone#:____________________________________________ Loopholein DischargeRegulationsAsmanyof you mayrecallfrompastnewsletters,FRIA’sHelplinerevealedaloopholein thedischargeregulationsthatnursinghomesarerequiredtofollow. NewYorkStatedoesnotallownursinghomestodischargeresidentswhohavebeen in afacilityover30 daysexceptundercertain circumstancesAND providedtheyhavebeen given anoticetoof theupcomingdischarge. Recognizingthatmanyfamilieswerenotbeinggiven therequirednoticeof adischarge/transfer,FRIAbroughtthemattertotheattention of theNewYorkLegalAssistanceGroup which filedacourtchallengetotheDepartmentof Health in 2003. Recently,becauseof FRIA’sefforts,theDepartmentof Health issueda‘DEARADMINISTRATOR’lettertoallNYSnursinghomesclarifyingthedischargeandtransferrightsof aresidentandtheopportunityforahearingtoappealadischarge,transferorbedholdaction. If you wouldlikeacopyof theletterormoreinformation on residentdischargepleasecallFRIAat212 732-5667. DOHDataNotCurrent whether corrective action of the problems has been taken  On March 23, 2005 the Department of Health (DOH) released additional information on its website about New York State nursing homes. DOH is responsible for conducting inspections of all nursing homes every 12 to 15 months. Survey summaries have been available for the past several years online at the DOH website, (www.health.state.ny.us) The additional data includes ownership information, occupancy rates, and breakdown of available units, ombudsman contact information and the number of complaints filed and sustained against a facility. Although this is a step in the right direction, the presentation of the material leaves a lot to be desired. For example, the Ombudsman contact information and nursing home occupancy rate are not current. (The correct ombudsman contact person for New York City is Laura Petta at petta@nyfscltcop.org). The nursing home occupancy rates listed date back to 2002 and thus are useless to consumers who are trying to place a loved one now. The information about enforcement can be misleading as well. For example, the summary does indicate the fines DOH assessed on nursing homes for poor care. However, it is unclear from this information by the homes. Nursing homes are required to formulate a plan of correction if deficiencies are noted at the facility. The DOH must ensure the plan of correction is followed, but there is no information provided as to whether the DOH follow-up on corrections was done on-site or via a phone call (most follow-up is done over the phone). So consumers should not assume that a problem resulting in a fine or deficiency has in fact been corrected. FRIA recommends that individuals interested in a particular home’s compliance obtain copies of the nursing home’s entire survey, available by sending an e-mail to DOH and posted in each facility rather than relying on these summaries. Please remember, surveys capture only a snapshot of facility activity at a particular moment in time and surveyors review only a sample of residents at each facility. Surveys by themselves are not sufficient to accurately compare one nursing home to another. You may also want to consult the Center of Medicare and Medicaid Services (CMS) website which posts facility quality measures. For information on quality measures visit FRIA’s website at www.fria.org. or call our helpline at 212 732-4455 for questions about individual homes. FRIAReachesOutAroundtheTown FRIA goes anyplace, anytime to provide educational presentations in the New York state communities. In March and April alone, FRIA , was a featured speaker at the Alzheimer’s Association in Manhattan, the Emmanuel Baptist Church in Brooklyn, and the Brooklyn Library. FRIA exhibited at a health fair in Washington Heights at the YM- YWHA and at the Age in Action 2005 Fair in Queens attended by over 10,000 people. We welcome invitations to speak at employee meetings, EAP presentations, church information about FRIA’s Speaker’s and synagogue meetings, and other Bureau and other outreach and community group gatherings. Please educational programs. contact Amy Paul for more FRIA’sBoardMembers:AntoniaPenaandBeatriceClose FRIA’sWISHLISTVolunteersNeededOffice Assistants (4+ hrs / week) Web Designer Graphic Designer Research Writer Printer Services Database Access Expert In-KindMaterialsNeededSoftware MS Publisher (latest version) Color Printer Color Scanner TV /VCR Computer Desks File Cabinets Question: Mymotherhasbeeninanursinghomeforseveralyears,herdiabeteshasprogressedandthedoctortellsmeshehasdevelopeddementia.Mymotheralwayswantedmeintheroomwhenshewasbeingcaredforbythenurseordoctor.Iwouldholdherhandandwewouldaskquestionsabouthercondition.ThenursinghomenowtellsmethatIhavetoleavetheroomwhenthedoctorisexaminingherandmymotherbecomesveryupset.Asherson,shouldIbeallowedtostayasIhaveinthepast? Answer: You neednotleavetheroomwhen yourmotherisbeingcaredfororexamined, unlesssherequeststhatyou doso.Thenursinghomeshouldhonoryourmother’swishesandallowyoutocontinuemonitoringhercareandensurethatnewconditionsarebeingtreatedapproriately.Ifyou haveahealth careproxythereshouldbenoquestionatall!Theproblemoften comesup ifyou donothaveahealth careproxy,even ifyouarethedesignatedrepresentativeon thenursinghomeforms.Nursinghomesoften trytoseparatefamilymembersfromthemedicaldecision processoncearesidentbeginstodevelop dementia.Whilearesidentmayhavememorylossorexhibitotherdementiasymptoms,thatdoesnotmean shenolongerhasrights.Unfortunately,NYSlawdoesnotclearlygivenext-of-kinlegalstandingin such situations,absentahealth careproxy.ThatiswhyFRIAisworkingsohardtopasstheFamilyHealthCareDecisionsAct(seepg2).And,thatiswhyitissoimportantforeach persontoexecuteaHealth Careproxyin advance. FREEFRIAHELPLINEM-W-F10am—5pm212732-4455Callusaboutyourlongtermhealth careconcernsin NYSFRIENDS AND RELATIVES OF INSTITUTIONAL AGED 18JohnStreet,Suite905NewYork,NY10038Phone:212732-5667Fax:212732-6945Helpline:212732-4455E-mail:fria@fria.orgPOSTAGE PAIDOrderthe8thEditionofthispopularcomprehensiveguidefromFRIA$30plus$5.00shippingandhandlingOrderwith VISA,MasterCardbycalling212-732-5667,on thewebatwww.fria.orgormailyourcheckto: FRIA18 John Street,Suite905 NewYork,NY10038 ASKFRIA