End of Life Care

Guardianship and Future Care Planning for Individuals with Developmental DisabilitiesRandi Rosenstein Vacca, Esq.Director of Legal Services, AHRC NYC1WHEN AN INDIVIDUAL LACKS CAPACITYIf someone is under 18 and lacks capacity, parents are assumed to be decision-makers. If someone is over 18 and lacks capacity, a surrogate decision-maker is necessary.2Determination of capacity often rests upon commonsense approach: the ability to understand and appreciate the nature and consequences of the proposed treatment and the ability to understand and appreciate the benefits and significant risks.

In medical setting - specific to the capacities of patient to understand information and make the decision under consideration.

Incapacity decision can never be based upon a diagnosis of mental retardation/developmental disability alone.

GUARDIANSHIPGuardianship is a legal relationship created and regulated by statute.

Creates a fiduciary relationship between the guardian and ward guardian empowered to make decisions to extent individual can not.

3General presumption of capacity can be overcome through the institutional proceeding and determination by court that person lacks capacity to make some or all important life decisions.

GUARDIANSHIPNYS currently has two guardianship statutes for individuals over 18:17-A Guardianship (SCPA 1750)Article 81 Guardianship (MHL 81)4ARTICLE 81 GUARDIANSHIPProvides for the appointment of a guardian for individuals who lack capacity to make decisions for themselves for ANY reason. 5Guardianships for the elderly and victims of trauma are mostly obtained through MHL Article 81 proceedings. Article 81 is sometimes also used for the mentally ill and developmentally disabled. ARTICLE 81 GUARDIANSHIPTailored authority, scope and duration of guardianship are strictly defined and rights of the guardian are delineated in the order.Judge will hold a hearing and look specifically at the adaptive skills of the individual to determine the rights of the guardian.617-A GUARDIANSHIPDeveloped in 1969; to authorize a Surrogate to appoint a guardian of person and/or property if the appointment would be in the potential wards best interest. Exclusively for persons with a diagnosis of intellectual/developmental disabilities.7Developmental disabilities are attributable to:cerebral palsy, epilepsy, neurological impairment, autism or traumatic head injury;any other condition of a person found to be closely related to mental retardation

17-A GUARDIANSHIP Plenary guardians authority extends to all medical/personal decisions.Ability to tailor?Considerably less expensive than Article 81.Pending amendments

8STANDBY GUARDIANSAssume responsibility after the death/incapacity of preceding guardian. 9Families can appoint standby guardians to ensure that someone will advocate for their children when they are no longer able to.

Over 18Legal residency statusFelony record complicates thingsuardians to ensure that someone will advocate for their children when they are no longer able to.

STANDBY GUARDIANS Full authority for 180 days.

A successor application must be submitted to the court to become primary! If standby does not assume primary guardianship, then the guardianship lapses.

10FILING A PETITIONAHRC New York City waitlist (212)780-4408

Training sessions for the forms

The forms are available online at:http://www.courts.state.ny.us/forms/surrogates/guardianship.shtml

1117-A GUARDIANSHIP - TYPESPerson

Property

Limited12Person Guardianship of the person allows the guardian to be the decision-maker for the person who is developmentally disabled, especially as it relates to elective medical, dental or hospital services.Property: allows guardian to control the wards assets, which are held jointly with the Surrogates Court. The guardian must receive Surrogates permission to utilize the funds.Limited (SCPA 1756): Enables the ward to retain and expend wages and have the power to contract/legally bind herself for one months wages or $300, whichever is greater. Any money in excess is controlled jointly by the property guardian and Surrogate.

17-A PROPERTY GUARDIANSHIPDoes not govern government entitlements, such as SSI and SSDI

In order to protect needs-based entitlements, a supplemental needs trust is usually a better option for excess funds. 13Typically, the assets of a 17-A ward are held by the clerk of the Surrogates Court, unless the court fixes a bond. The guardian will be required to deposit all of the wards funds into the account held jointly with the court, and will need an endorsement of the surrogate clerk on every check made out of that account.

Eligibility for SSI and Medicaid will be jeopardized if the Respondent respectively has more than $2,000 or $13,800 in their name.

FILING A PETITION File in Surrogates Court

Manhattan 31 Chambers Street, clerks office is on the 3rd floor

Jurisdiction based on Respondents county of residence.142 judges Judge Anderson and Judge Mella

(646) 386-5003 REQUIREMENTS NY COUNTYPetitionConsentWaiverPossibly an Affidavit of Due DiligenceMedical formsSupplemental formsDay Program sheetBirth/death certificates$20 fee for new petitionsFingerprinting by non-parents if parent is not coguardianAddress histories (petitioner(s), standby(s) and households for the last 28 years)

15*OCFS - court checks with the central registry of abuse and neglect to determine if there has ever been a complaint. Usually will not schedule a hearing will not be scheduled until response is received even if there has been a positive report of past abuse or neglect, will not necessarily preclude the guardianship. Must provide an explanation to the court.

*Everything needs to be signed/notarized and filed within one yearBIRTH AND DEATH CERTIFICATESDepartment of Health, Bureau of Vital Statistics,125 Worth Street, New York, NY 10013

(212) 788-4636

Can go with the individual if having trouble obtaining16MEDICAL CERTIFICATIONSApplication must include certifications by 2 doctors concluding that the individual is unable to manage their own affairs due to intellectual and/or developmental disability (see certification, question 6) and that they are unable to appreciate the nature and consequences of health care decisions and accordingly provide informed consent see certification, questions 9 and 10).Must be thorough

Within 6 months of filing17AFTER FILING (MANHATTAN)Service of citation/notice

Appearance of Petitioner(s) and Respondent required at hearing

Once guardianship granted, annual reporting to the court for all types of 17-A guardianshipCitation/notice court will direct.people that didnt sign waiversRespondentMHLS, residential director

18HEALTH CARE DECISIONS ACTPart of 17-A Guardianship statute (1750(b)) originally enacted in 2003, providing that 17-A guardians may have the authority in some cases to make decisions to withhold or withdraw life-sustaining treatment.

Expanded applicability over the years to include:All 17-A guardians of the person, including Corporate Guardians and 17-A guardians for persons with DDQualified family members Consumer Advisory Board for Willowbrook Class membersSurrogate Decision-making Committees

19HCDA HIERARCHY OF AUTHORIZED SURROGATESArticle 17-A GuardianActively involved spouseActively involved parentActively involved childActively involved adult siblingActively involved adult family member (through blood, marriage, legal adoption)CAB Advisory Board for Willowbrook class members it representsSDMC or court20Unlike the Family Healthcare Decision Act, does not include domestic partner or close friend.

HCDA: DECISION-MAKING STANDARDEnd-of-life decisions must be guided by the persons best interests, and, when reasonably known or ascertainable with reasonable diligence, on the wishes of the individual, including moral and religious beliefs21Same as the FHCDA

Assessment of best interests should take into consideration:Uniqueness and dignity of each individual, andPreservation, improvement or restoration of their health, and Relief of pain and suffering by means of palliative care and pain management, and The unique nature of artificially provided nutrition or hydration (if applicable), andThe entire medical condition of the person

HCDA: MEDICAL CONDITIONMedical condition must be:Terminal, ORIrreversible and will continue indefinitely, ORIndividual must be permanently unconscious

Life-sustaining treatment would impose an extraordinary burdenextraordinary burden in light of:Medical condition (other than the mental retardation), ANDExpected outcome of treatment

22HCDA: MEDICAL CONDITIONIf guardian will be making decision to withdraw/withhold life-sustaining treatment:There must be no reasonable hope of maintaining life, ORThe artificially provided nutrition/hydration poses an extraordinary burden.23HCDA: NOTICE REQUIREMENTSAt least 48 hours in advance (withdrawal)Notice of decision to withdraw/withhold life-sustaining treatment must be given by the treating physician to:IndividualIf in a residential facility, Director or CEO of the residential facility and MHLSIf not in a residential facility, Commissioner of OPWDD24Withholding must be within a reasonable time frameHCDA OBJECTIONSDecision to withhold/withdraw treatment will be immediately suspended (unless doing so would, in reasonable medical judgment, be likely to result in death) pending judicial review upon objection by:The patientParent/adult siblingAttending physicianAny other health care practitioner providing services Director/CEO of residential facility or DDSO DirectorMHLSOPWDD Commissioner

HCDA: ADDITIONAL REQUIREMENTSNew confirmation of lack of capacity by two medical professionals, one of which must have specialized experience and meet certain criteria

Confirmation of lack of capacity must indicate that does not understand nature/consequences, including benefits/risks/alternatives, and accordingly cannot reach an informed decision to consent or refuse treatment in a knowing and voluntary way that promotes the patients wellbeing.

Attending or consulting physician must:be employed by a DDSO; ORhave been employed for at least two years in a facility or program operated, licensed or authorized by OPWDD; ORhave been approved by the OPWDD Commissioner (at least three years of specialized training/experience).

26HCDA: SUMMARY OF STEPS1. Identify appropriate surrogate; 2. Surrogate will then make the decision to withhold life-sustaining treatment and notify doctor;3. Two physicians confirm incapacity;4. Determination of whether threshold medical criteria is met;5. Notifications by the doctor (specific form used throughout the 5 boroughs, MOLST)

FAMILY HEALTH CARE DECISIONS ACTSigned into law March 2010 (and key provisions became effective June 2010)

Governs health care decisions for patients in hospitals/nursing homes who lack capacity and did not previously appoint a health care agent or give clear and convincing evidence of their wishes. 28Law until 2010 in NY had been stable and very conservative. Patients with decisional capacity could decline or accept treatmentIf someone is incapacitated, they would have needed to have left clear and convincing evidence of wishes regarding life support

NYS Task Force on Life and the Law advanced this legislative proposal to address this problem proposed a statute that would later be called the FHCDA. Had been a great deal of opposition to the bill by organizations (religious). For many years, the bill would kept dying. Democrats gained control of the Senate for the first time in 40 years in 09 and it passed.FHCDAFHCDA addressed two significant issues: Problem generally obtaining consent for patients without capacity.

New Yorks conservative rule regarding decisions to withhold or withdraw life-sustaining treatment.29General consent

For the FHCDA to apply, one physician must decide that the patient lacks capacity, which must be corroborated by another health/social service practitioner at the facility.

FHCDA: GENERAL STANDARDSurrogate decision-makers must base their decisions on the patients wishes. If the patients wishes are not reasonably known, or can not be ascertained with reasonable diligence, the surrogate must base decisions on the patients best interests.

30Subjective/objective standardFHCDA Surrogate ListMHL Article 81 GuardianSpouse (if not legally separated) or domestic partnerAdult childParentAdult siblingClose friend31Also includes domestic partner

FHCDA CARVE OUTIf a patient has a developmental disability and lacks capacity, the FHCDA will not apply if: The patient has a court-appointed SCPA 17-A guardianThe decision could be made by a surrogate decision-maker pursuant to the Surrogates Court Procedure Act 1750-b. The decision could be made per the Mental Hygiene Law or OPWDD regs.32This is a caveat.

We will discuss 1750b now

HEALTH CARE PROXYIf capable, principal can designate an agent to make almost all medical decisions for them if and when they are deemed incapable of making decisions on their own behalf. Less restrictive approach than guardianship

33-Something that people should start thinking about right away. Must be done when person has capacity-Can be completed by anyone 18 and older-Page 9 of Healthcare Choices Who Can Decide?-Should completed when healthy to make sure someone is designated to make decisions for you if you are no longer able to.-Free-Needs educationWho do you trust to make decisions? Are any particular decisions important to me (do or do not want specific interventions)?

HEALTH CARE PROXYPrincipal may include wishes regarding specific health care decisions.Alternatively, a principal can trust that the health care agent will act in accordance with their wishes, or in their best interest.

34For example: blood transfusions; surgical procedures; psychotropic medication.

HEALTH CARE PROXYMust specifically state in the proxy that principal is aware of/has authority to make decisions regarding the refusal of artificial nutrition/hydration for agent to have authority.

35One caveat/exceptionHEALTH CARE PROXY CAPACITY TO EXECUTEThe principal must understand that they are conferring upon someone else the authority to make health care decisions for them. (Capacity assessment)

36HEALTH CARE PROXY - CREATIONMust be witnessed by two adults, who sign and date the form.If the principal is unable to sign the form, another party can sign for them in front of two witnesses.The witnesses must sign the proxy and state that the principal executed the proxy willingly and free from duress. 37Must be signed and dated by two witnessesHEALTH CARE PROXY - CREATIONIf person lives in an OPWDD-operated facility:One witness must not be affiliated with the facility.Other witness must be a medical doctor/licensed psychologist with specialization/experience with developmental disabilities.Employed by the DDSO; orHas been employed for at least two years in an OPWDD operated/certified facility; orHas specialized training and two years of experience serving individuals with DD; orHas had at least three years experience serving individuals with DD

38HEALTH CARE PROXYAgents authority begins once the principal has been deemed incapacitated by attending physician.If due to the principals developmental disability, there must be a concurring opinion by physician or licensed psychologist with specialized training/experience.

For decision to withhold/withdraw life-sustaining treatment, incapacity must be confirmed by second physician.

39HEALTH CARE PROXYThe principals objection to a determination of incapacity or health care decision made by the agent prevails until a court has specifically determined that the principal lacks capacity to make health care decisions.

40SUPPLEMENTAL NEEDS TRUSTSWay to help ensure that money will be available for loved one after you are gone and help to meet their needs to the extent that they are not covered by Medicaid/SSI/SSDI.Can be used for supplemental needs vacations, camp, recreational activities, legal expenses, etc.Can be used for anything above/beyond what benefits cover, including-funeral expenses-legal/guardianship-vacations41HOW ARE SUPPLEMENTAL NEEDS TRUSTS FUNDED?First-party SNT funded by the assets of the individual (often established after a lawsuit recovery or inheritance)

Third-party SNT funded by assets of someone other than the individualFirst party -If private trust, they must be under 65-If private, trust must private that Medicaid gets reimbursed-A parent, grandparent, legal guardian or court order must established the trust if person not able to do so.

Third party-Can be established through will or while the person is alive-Families can name SNT as beneficiary of insurance policy-Pension can also be used to fund SNT42TYPES OF SUPPLEMENTAL NEEDS TRUSTSPooledManaged by non-profit organizationsFunds pooled together for investment/management Separate accounts for each beneficiaryOften initial minimum depositSome/all remainder funds remain with agency to be used for benefit of other individuals.Not subject to Medicaid paybackPrivate Individual trustee, often family member or attorneyNo minimum amount of moneyIf 3rd party SNT, remainder funds can be left to others.

43CONTACT INFORMATIONRandi Rosenstein Vacca, Esq.Director of Legal Services, AHRC(212) 780-2586