1. Randi Rosenstein Vacca, Esq. Director of Legal Services, AHRC NYC
Guardianship and Future Care Planning for Individuals with Developmental Disabilities
Randi Rosenstein Vacca, Esq.
Director of Legal Services, AHRC NYC

2. WHEN AN INDIVIDUAL LACKS CAPACITY
If 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.
Determination 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.

3. GUARDIANSHIP
Guardianship 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.
General 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.

4. GUARDIANSHIP
NYS currently has two guardianship statutes for individuals over 18:
17-A Guardianship (SCPA § 1750)
Article 81 Guardianship (MHL § 81)

5. ARTICLE 81 GUARDIANSHIP
Provides for the appointment of a guardian for individuals who lack capacity to make decisions for themselves for ANY reason.
Guardianships 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.

6. ARTICLE 81 GUARDIANSHIP
Tailored 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.

7. 17-A GUARDIANSHIP
Developed in 1969; to authorize a Surrogate to appoint a guardian of person and/or property if the appointment would be in the potential ward’s best interest.
Exclusively for persons with a diagnosis of intellectual/developmental disabilities.
Developmental 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

8. 17-A GUARDIANSHIP
Plenary – guardian’s authority extends to all medical/personal decisions.
Ability to tailor?
Considerably less expensive than Article 81.
Pending amendments

9. STANDBY GUARDIANS
Assume responsibility after the death/incapacity of preceding guardian.
Families can appoint standby guardians to ensure that someone will advocate for their children when they are no longer able to.
Over 18
Legal residency status
Felony record complicates things
uardians to ensure that someone will advocate for their children when they are no longer able to.

10. 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.

11. FILING A PETITION AHRC New York City waitlist – (212)780-4408
Training sessions for the forms
The forms are available online at:
guardianship.shtml

12. 17-A GUARDIANSHIP - TYPES
Person
Property
Limited
Person 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 ward’s assets, which are held jointly with the Surrogate’s Court. The guardian must receive Surrogate’s 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 month’s wages or $300, whichever is greater. Any money in excess is controlled jointly by the property guardian and Surrogate.

13. 17-A PROPERTY GUARDIANSHIP
Does 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.
Typically, the assets of a 17-A ward are held by the clerk of the Surrogate’s Court, unless the court fixes a bond. The guardian will be required to deposit all of the ward’s 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.

14. FILING A PETITION File in Surrogate’s Court
Manhattan – 31 Chambers Street, clerks office is on the 3rd floor
Jurisdiction based on Respondent’s county of residence.
2 judges – Judge Anderson and Judge Mella
(646)

15. REQUIREMENTS – NY COUNTY
Petition
Consent
Waiver
Possibly an Affidavit of Due Diligence
Medical forms
Supplemental forms
Day Program sheet
Birth/death certificates
$20 fee for new petitions
Fingerprinting by non-parents if parent is not coguardian
Address histories (petitioner(s), standby(s) and households for the last 28 years)
*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 year

16. BIRTH AND DEATH CERTIFICATES
Department of Health, Bureau of Vital Statistics,125 Worth Street, New York, NY 10013
(212)
Can go with the individual if having trouble obtaining

17. MEDICAL CERTIFICATIONS
Application 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 filing

18. AFTER 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 guardianship
Citation/notice – court will direct.
people that didn’t sign waivers
Respondent
MHLS, residential director

19. HEALTH CARE DECISIONS ACT
Part 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 DD
Qualified family members
Consumer Advisory Board for Willowbrook Class members
Surrogate Decision-making Committees

20. HCDA – HIERARCHY OF AUTHORIZED SURROGATES
Article 17-A Guardian
Actively involved spouse
Actively involved parent
Actively involved child
Actively involved adult sibling
Actively involved adult family member (through blood, marriage, legal adoption)
CAB Advisory Board for Willowbrook class members it represents
SDMC or court
Unlike the Family Healthcare Decision Act, does not include domestic partner or close friend.

21. HCDA: DECISION-MAKING STANDARD
End-of-life decisions must be guided by the person’s best interests, and, when reasonably known or ascertainable with reasonable diligence, on the wishes of the individual, including moral and religious beliefs
Same as the FHCDA
Assessment of best interests should take into consideration:
Uniqueness and dignity of each individual, and
Preservation, 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), and
The entire medical condition of the person

22. HCDA: MEDICAL CONDITION
Medical condition must be:
Terminal, OR
Irreversible and will continue indefinitely, OR
Individual must be permanently unconscious
Life-sustaining treatment would impose an extraordinary burden
extraordinary burden in light of:
Medical condition (other than the mental retardation), AND
Expected outcome of treatment

23. HCDA: MEDICAL CONDITION
If guardian will be making decision to withdraw/withhold life-sustaining treatment:
There must be no reasonable hope of maintaining life, OR
The artificially provided nutrition/hydration poses an extraordinary burden.

24. HCDA: NOTICE REQUIREMENTS
At least 48 hours in advance (withdrawal)
Notice of decision to withdraw/withhold life-sustaining treatment must be given by the treating physician to:
Individual
If in a residential facility, Director or CEO of the residential facility and MHLS
If not in a residential facility, Commissioner of OPWDD
Withholding must be within a “reasonable” time frame

25. HCDA OBJECTIONS
Decision 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 patient
Parent/adult sibling
Attending physician
Any other health care practitioner providing services
Director/CEO of residential facility or DDSO Director
MHLS
OPWDD Commissioner

26. HCDA: ADDITIONAL REQUIREMENTS
New 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 patient’s wellbeing.
Attending or consulting physician must:
be employed by a DDSO; OR
have been employed for at least two years in a facility or program operated, licensed or authorized by OPWDD; OR
have been approved by the OPWDD Commissioner (at least three years of specialized training/experience).

27. HCDA: SUMMARY OF STEPS 1. 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)

28. FAMILY HEALTH CARE DECISIONS ACT
Signed 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.
Law until 2010 in NY had been stable and very conservative.
Patients with decisional capacity could decline or accept treatment
If 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.

29. FHCDA FHCDA addressed two significant issues:
Problem generally obtaining consent for patients without capacity.
New York’s conservative rule regarding decisions to withhold or withdraw life-sustaining treatment.
General 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.

30. FHCDA: GENERAL STANDARD
Surrogate decision-makers must base their decisions on the patient’s wishes.
If the patient’s wishes are not reasonably known, or can not be ascertained with reasonable diligence, the surrogate must base decisions on the patient’s best interests.
Subjective/objective standard

31. FHCDA – Surrogate List MHL Article 81 Guardian
Spouse (if not legally separated) or domestic partner
Adult child
Parent
Adult sibling
Close friend
Also includes domestic partner

32. FHCDA – “CARVE OUT”
If a patient has a developmental disability and lacks capacity, the FHCDA will not apply if:
The patient has a court-appointed SCPA 17-A guardian
The decision could be made by a surrogate decision-maker pursuant to the Surrogate’s Court Procedure Act § 1750-b.
The decision could be made per the Mental Hygiene Law or OPWDD regs.
This is a caveat.
We will discuss 1750b now

33. HEALTH CARE PROXY
If 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
-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 education
Who do you trust to make decisions?
Are any particular decisions important to me (do or do not want specific interventions)?

34. HEALTH CARE PROXY
Principal 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.
For example: blood transfusions; surgical procedures; psychotropic medication.

35. HEALTH CARE PROXY
Must 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.
One caveat/exception

36. HEALTH CARE PROXY – CAPACITY TO EXECUTE
The principal must understand that they are conferring upon someone else the authority to make health care decisions for them. (Capacity assessment)

37. HEALTH CARE PROXY - CREATION
Must 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.
Must be signed and dated by two witnesses

38. HEALTH CARE PROXY - CREATION
If 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; or
Has been employed for at least two years in an OPWDD operated/certified facility; or
Has specialized training and two years of experience serving individuals with DD; or
Has had at least three years experience serving individuals with DD

39. HEALTH CARE PROXY
Agent’s authority begins once the principal has been deemed incapacitated by attending physician.
If due to the principal’s 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.

40. HEALTH CARE PROXY
The principal’s 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.

41. SUPPLEMENTAL NEEDS TRUSTS
Way 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
-vacations

42. HOW 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 individual
First 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 SNT

43. TYPES OF SUPPLEMENTAL NEEDS TRUSTS
Pooled
Managed by non-profit organizations
Funds pooled together for investment/management
Separate accounts for each beneficiary
Often initial minimum deposit
Some/all remainder funds remain with agency to be used for benefit of other individuals.
Not subject to Medicaid payback
Private
Individual trustee, often family member or attorney
No minimum amount of money
If 3rd party SNT, remainder funds can be left to others.

44. CONTACT INFORMATION
Randi Rosenstein Vacca, Esq.
Director of Legal Services, AHRC
(212)