DECISION-MAKING SUPPORT FOR ADULTS WITH DISABILITIES
DECISIONMAKING SUPPORT
InNewYorkState,whensomeoneturns18yearsold,they canmakealloftheirowndecisionsabouttheirlife.
Manypeopleimmediatelyassumethat peoplewithintellectualanddevelopmental disabilities(I/DD)needaguardiantohelp withdecision-making.
However,therearealotof misunderstandingsaboutwhat guardianshipmeansforpeoplewithI/DD andwhenitshouldbeused.
ManypeoplewithI/DDdonotneed guardians.Thereareotheroptionsthatgive protectionwhereneeded,butalsoleta personcontroltheareaswheretheycan makedecisionsontheirownorwith support.
WHAT IS SUPPORTED DECISION-MAKING?
SupportedDecision-Making(SDM)isapracticethathelps peoplewithI/DDmaketheirownchoiceswithhelpfrom trustedindividuals,knownassupporters.
ManyotherstatesandcountrieshavefoundSDMtobea lessrestrictivewayofprotectingpeoplecomparedto guardianship.WithSDM,Decision-Makerskeepalltheir legalandcivilrights.
NewYorkStatehasalawthatrecognizestheauthorityof SDM.ThislawledtheNewYorkOfficeforPeoplewith DevelopmentalDisabilities(OPWDD)toproposerulesthat settheminimumstandardsforalegalSDM.
OPWDDSupportedDecision-Making Process:
Theproposedrules,announcedinAugust2024,explaina processforSDMthatisoverseenbyOPWDD.
Inthisprocess,trainedFacilitatorsworkwithDecisionMakersandtheSupporterstheychoose.
TheFacilitatorhelpstheDecision-MakerandSupporters figureoutwheretheyneedhelpmakingdecisions,likein financialmatters,health,andotherpartsoflife.
TheFacilitatoralsohelpstheDecision-Makerchoosethe bestSupportersforthoseareas.
Attheendofthisprocess,theDecision-Makercandecideif theywanttocreateaSupportedDecision-Making Agreement(SDMA).Thisagreementisalegaldocument thatthirdparties,suchasdoctors,banks,stateagencies, andcaregiversmustfollow,withafewexceptions.
Undertheproposedregulations,anyonecanpursueSDM nomatterwhattheirdisabilityis,orwhethertheygethelp fromOPWDD.
However,ifapersonalreadyhasaguardian,theguardian mustgivepermissionforthepersontotakepartinSDM.
ThecostsofOPWDD’sSDMprocessmaybecoveredfor peoplewhoareapprovedtoreceiveOPWDDservices.
FormoreinformationaboutSDM,visit
sdmny.org
WHAT OTHER SUPPORTS CAN HELP WITH MAKING FINANCIAL DECISIONS?
PowerofAttorney
APowerofAttorneyisalegaldocumentthatletsone personchooseanotherpersontomakedecisionsforthem.
Thepersonchosencanhaveeitherlimitedorwiderangingpowers,andthesepowerscanlastforaspecific timeorforaslongastheyareneeded.
Theycanalsostartnoworbeginatafuturetime.
AbleAccounts
ABLEaccountsallowapersonwithadisabilityortheir familymember(s)tosavemoneybeforeitistaxed.
Moneyisputinaspecificaccountthatcanbeusedfor specialexpensesrelatedtoaperson’sdisability.
Also,themoneyinABLEaccountsdoesnotcountagainst thepersonwithadisabilitywhendecidingiftheyare eligibleforgovernmentbenefits.
Theaccountownercanusethemoneyintheaccountfor disability-relatedexpensesandtosetupautomatic paymentstopayregularbills.
YouusuallydonotneedalawyertosetupanABLE account.
SupplementalNeedsTrust
ASupplementalNeedsTrustallowspeoplewithdisabilities andtheirfamiliestoplacemoneyintoatrust.
Themoneyinthetrustdoesnotcountagainsttheperson withadisabilitywhendecidingiftheyareeligiblefor governmentbenefits.
Themoneyinthetrustcanbeusedforthingsgovernment benefitsdonotcover,suchasspecialservices,recreation, classes,vacations,goodsandservices,andotherthings thatimprovethequalityoflifeforthepersonwitha disability.
Thetrustee,whoisinchargeofthetrust,managesthe moneyinthetrust.
Whenapersonwithadisabilityusestheirownmoneyor incomeforthetrust,itiscalledaFirst-PartySupplemental NeedsTrust.Whenfamilyand/orfriendscreatethetrust withtheirmoney,itiscalledaThirdPartyTrust.
WhiletherearesomedifferencesbetweenaFirst-Party andThird-PartyTrust,bothallowthepersonwitha disabilitytohaveabetterqualityoflifewhilestillreceiving governmentbenefits.Mostsupplementalneedstrustsare setupwiththehelpofalawyer.
PooledTrusts
Pooledtrustsworklikesupplementalneedstrustsbutare managedbyanon-profitorganization.
Inapooledtrust,manypeoplecombinetheirfundsto makeinvestmentsstronger.Eachpersonhastheirown subaccountwiththeirownmoney.
Thesetrustsprotectaperson’sabilitytoreceive governmentbenefitswhilealsolettingthemusethe moneytoimprovetheirqualityoflife.
Pooledtrustsareagoodchoiceforpeoplewithdisabilities whoearnorreceivemoneythatmakesthemineligiblefor Medicaid. Theorganizationthatmanagesthepooledtrusthelpsthe personwithadisabilitykeeptheirbenefitswhilealso allowingthemtospendmoneyonnon-coveredneeds.
Settingupapooledtrustusuallydoesnotrequirealawyer.
RepresentativePayees
RepresentativePayeesarepeopleororganizations chosenbytheSocialSecurityAdministrationtohelp peoplewithdisabilitiesmanagetheirSocialSecurity benefits.
Theyhelppayforbasicneedslikefood,shelter,clothing, andmedicalcare,andhelpsaveleftovermoney.
HOW CAN I HELP SUPPORT A PERSON IN MAKING HEALTH CARE DECISIONS?
KeyDocumentsthatLetyouSpeakUp forSomeone:
AHIPAAreleaseallowsatrustedfamily memberorfriendtogetmedical recordsandtalktomedicalprovidersof apersonwithadisability.Peoplegiven accesscanalsohelpmanagemedical appointmentswithouttakingaway medicaldecision-making.
AHealthCareProxyisalegaldocument thatletssomeoneelsemakehealthcare decisionswhenapersonisunableto makedecisionsthemselvesduetoillness orinjury.Anyonecanuseahealthcare proxyiftheyunderstandthattheperson theynameastheiragentwillmake decisionsiftheycannot.
TheFamilyHealthcareDecisionsAct allowsaperson’sfamilyorclosefriendto makemedicaldecisionsifthepersonis unabletomakedecisionsanddoesnot haveahealthcareproxy.TheFamily HealthcareDecisionsActisalawthat worksautomatically.Nospecialpaperor actionisneeded.
SurrogateDecision-MakingCommittee makesurgentmedicalchoicesifaperson cannotmakemedicaldecisionsanddoes nothaveahealthcareproxy.
MedicalOrdersforLifeSustaining Treatment(MOLST)aremedicalorders usuallyusedtoimproveend-of-lifecare forpeoplewithseriousillnesses.AMOLST translatesaperson’swishesaboutlifesustainingtreatmentintomedical orders.AMOLSTiscreatedwithinput fromthepatient,theirhealthcareproxy agentorothersurrogatedecisionmakers,andhealthcareprofessionals.
SCPA ARTICLE 17-A GUARDIANSHIPS
SCPA17-aguardianshipisthemostrestrictivechoiceforadult decision-making.ItisavailableonlyforpeoplewithI/DDand peoplewhohadatraumaticbraininjurypriortoage22.
17-aguardianshipsareplenary,meaningthattheyapply broadlyandarenottailoredtotheperson’sdecisionmakingstrengthsandweaknesses.Theguardianisgiven decision-makingpoweroverallareasofaperson’slife, evenifthepersoncanmakedecisions(withorwithout support)insomeormostareas.
17-aguardianshipsarepermanentunlessendedbya court.PeoplewithI/DDareoftenplacedunder guardianshipattheageof18.Astheyage,theydevelop increasedindependenceandnolongerneedguardianship. However,anewcourtproceedingisneededtoendthe guardianship.Thisprocessischallenging,evenifthe guardiansupportstheremovaloftheguardianship.
17-aguardianshipsdonotrequireguardianstodoany reporting.Becausethereisnocontactovertheyearswith thecourt,thereisnowaytomakesuretheperson’sneeds arebeingmet,orthattheguardianisevenalive.Thiscan leavethepersonunderguardianshipin“legallimbo”if theirguardianisnolongeravailable,orisnotmaking gooddecisionsfortheperson.
Unfortunately,guardianshipcannotstopapersonfrom takingrisks,beinghurtortakenadvantageof,being arrested,orgettingintofinancialtrouble.Thebestwayto avoidtheseoutcomesistobuildtrust,communicate often,teachpeopletospotdanger,andfostersound decision-makingskills.Researchshowsthatpeoplewith I/DDwhosefamilyandproviderssupporttheminhaving morecontrolovertheirownlivesarebetterabletoavoid andresistabuse.
[1]https://youth-voice.org/what-do-you-need-to-know-about-guardianship/
MYTH:Parentsneed guardianshiptostayinvolved intheirchild’seducation.
InNewYork,parentsstillhavetherighttomake educationaldecisionsevenaftertheirstudentturns18. Thisisimportanttoknowbecauseoften,schoolpersonnel regularlymisinformparentsthattheymustfilefor guardianshipiftheywishtohaveinputandrightsin specialeducationdecisionsforstudentswhoareover18. Thisisnottrue,andinfact,ina2023case,theFederal CourtofAppealsruledthatinNewYork,boththestudent andparentshaveenforceablerightsundertheIndividuals withDisabilitiesAct(IDEA)whenastudentturns18.
[2]J.S.vNewYorkStateDept.ofCorrectionsandCommunitySupervision, 76F4th32(2dCir2023).
MYTH:Parentsneedguardianshipto obtainrecordsrelatedtohealthcare andgovernmentbenefits.
AnadultwithI/DDhasthelegalrighttoallowafamily membertoobtaintheirrecords.Onlyacourtcantake awayanadult’scontrolovertheirprivaterecords, includingwhocanaccessthoserecords.Forexample,a personwithI/DDwhoisnotunderguardianshipcansigna
HIPAAreleasetoallowaparenttoaccesstheirmedical information,orahealthcareproxytoallowaparentto makemedicaldecisionsintheeventthatpersonisnot abletomaketheirowndecisionsbecauseoftheirmedical condition.
RESOURCES
SupportedDecision-Making
SupportedDecision-MakingInformation: https://sdmny.org/who-supports-supported-decisionmaking/
SupportedDecision-MakingNewYork: https://sdmny.org/
FinancialSupports
PowerofAttorney:
https://www.osc.ny.gov/retirement/members/powerattorney
ABLEAccounts: https://www.mynyable.org/
SupplementalNeedsTrust:
https://www.nyc.gov/assets/hra/downloads/pdf/servic es/program integrity/trustee guidelines for administ ration _ of _ a _supplemental_needs_trust.pdf
PooledTrusts:
http://health.wnylc.com/health/entry/4/ RepresentativePayee: https://www.nyconnects.ny.gov/services/representativ epayee2466#:~:text=The%20Representative%20Payee%2 0is%20responsible,(845)%20331%2D7039
HealthcareDecision-Making
HIPAARelease:
https://www.nycourts.gov/forms/hipaa_fillable.pdf
HealthcareProxy:
https://www.health.ny.gov/publications/1430.pdf
TheFamilyHealthcareDecisionsAct: https://nysba.org/fhcda-resource-center/ SurrogateDecision-MakingCommittee: https://www.justicecenter.ny.gov/SDMC
MedicalOrdersforLifeSustainingTreatment: https://www.health.ny.gov/professionals/patients/patie nt _rights/molst/
https://youth-voice.org/what-do-you-need-to-knowabout-guardianship/
J.S.v.NewYorkStateDepartmentofCorrectionsand CommunitySupervision:
https://www.dropbox.com/scl/fi/2o4jhnuglh3zp877zhje h/Decision-2023.pdf?
rlkey=osw50g7pi6pv8hyuxomv28xjv&e=1&st=eaoe6y1e &dl=0
DISCLAIMER
This document is intended to give basic information and not individual legal advice. DRNY accepts no liability for the content of this document or for the consequences of any actions taken on the basis of the information provided.
DRNY is the designated independent non-profit Protection & Advocacy (P&A) System and Client Assistance Program (CAP) empowered by Congresstoinvestigateallegationsofabuseandneglectandprovidelegal and non-legal advocacy services to people with disabilities in New York State. The P&A System was created by Congress as a direct result of the horrific conditions that were uncovered in the 1970s at New York’s WillowbrookStateSchool.
ALBANY
725Broadway,Suite 450Albany,NewYork 12207-5001
BROOKLYN
25ChapelStreet,Suite 1005Brooklyn,NewYork 11201
MAILINGADDRESS
ROCHESTER
44ExchangeBlvd,Suite 110Rochester,NewYork 14614
DisabilityRightsNewYork,279TroyRoad,Ste9,PMB236,Rensselaer,NY12144
DRNY is supported at taxpayer expense by the US Department of Health & Human Services, The Administration for Community Living; Center for Mental Health Services, Substance Abuse & Mental Health Services Administration; US Department of Education, Rehabilitation Services Administration; and, the Social Security Administration This publication does not represent the views, positions or policies of, or the endorsements by,anyofthesefederalagencies
