The Cerebral Palsy Associations of New York State Guardianship Program

1. The Cerebral Palsy Associations of New York State Guardianship Program Presented by Donna Lamkin and Steve Mosenson

3. No “treatment” without informed consent Act of reasoned deliberation Balancing positives and negatives / risks and benefits Based on full disclosure of facts and alternatives Informed Consent

4. NY Mental Hygiene Law 80.03(c) Lack of ability to consent or refuse major medical treatment means the patient cannot adequately understand and appreciate the nature and consequences of a proposed major medical treatment, including the benefits and risks of and alternatives to such treatment, and cannot thereby reach an informed decision to consent or to refuse such treatment in a knowing and voluntary manner that promotes the patient’s well being Statutory definition

5. Presumption of Competency for all adults Overcoming the presumption: Clinical / functional incompetency Legal Incompetency Autonomy

6. Determination made by professionals under ethical principles or regulations and policies of their respective professional or customary standards. Based on objective facts that tend to demonstrate that the person does not meet the statutory standard. Rebuts the presumption of competency Clinical incompetency

7. Knowledge, intelligence, voluntariness Finding may be competency for some matters, but no competency for others Competent today, but not tomorrow Competent with medications, but no competency without medications Clinical incompetency

8. Statutory (minor children, etc.) Judicial declaration Guardianship appointment Legal incompetency

9. NY Public Health Law Section 2504. Limited right to make health care decisions for others Parent / child Emergency Act on good faith based upon representation Hierarchy of decision-making

10. OMRDD regulations expand substitute decision-making rights Program residents only Consumer is at the top of the hierarchy Does he or she have capacity to consent? If so, explain risks, benefits, alternatives Consumer can consent or refuse consent

11. If no capacity to consent: Program administrator can give consent if not “professional medical treatment” A medical, dental, surgical or diagnostic intervention or procedure in which a general anesthetic is used or which involves a significant invasion of bodily integrity requiring an incision or producing substantial pain, discomfort, debilitation or having a significant recovery period, or any professional diagnosis or treatment to which informed consent is required by law. 14 NYCRR 633.99

12. If professional medical treatment AND adult consumer lacks capacity, substitute can be utilized: Guardian lawfully empowered to give consent, or person’s health care proxy Actively involved: Spouse Parent Adult child Adult sibling Adult family member CAB for class members SDMC or Court 14 NYCRR 633.11

13. Highest priority for substitute decision-making Legal incapacity leads to appointment Two types of guardianship: Article 81 of the NY Mental Hygiene Law Article 17-A of the NY Surrogates Court Procedure Act Guardianship

14. Appointment of a guardian whose authority is appropriate to satisfy the needs of the incapacitated person (IP) Flexibility in meeting the needs of the IP Tailored guardianship – guardian only gets the powers necessary to assist the IP in decision-making Appointment must “take into account the personal wishes, preferences and desires of the person, and which affords the person the greatest amount of independence and self-determination and participation in all the decisions affecting such person’s life” MHL Section 81.01 Article 81 Guardianship

15. Addresses both personal and financial aspects Standard for appointment focuses on the functional level; and decisional capacity of the IP, rather than the underlying mental or physical condition Clearly delineated due process “Least restrictive alternative” Rules for guardian’s accountability and sanctions for failure to appropriately exercise guardian’s powers Education programs and court certification Article 81 Guardianship

16. Standard for Appointment: Clear and convincing evidence that the appointment is necessary for the person to meet his or her personal care or property management needs, and that the person either agrees to the appointment or is incapacitated. MHL Section 81.02 Article 81 Guardianship

17. Court appoints and independent court evaluator to determine which powers the IP needs assistance with. Personal and Property Court holds a hearing in which the IP is provided due process rights Guardian is given only those powers necessary to assist the IP “tailored guardianship” Article 81 Guardianship

18. Special guardianship for persons with MR / DD Plenary or full guardianship – no tailoring. Simplified procedures Generally no hearing Standard for appointment – Court must find that the appointment of a guardian would be in the best interests of the person with MR / DD Article 17-A Guardianship

19. Power for end of life decisions Withhold or withdraw life sustaining treatment Considerable procedural protections Article 17-A Guardianship

20. Objection to and appeal of care and treatment Informed consent for service plans that involve untoward risk to an individual’s protection or rights (e.g., psychotropic meds) Receipt of rights and responsibilities of persons receiving services Notice of Reportable incidents Consent to professional medical treatment Role of the Guardian

21. Not for Profit Corporations may serve as guardian of the person Not guardian of the property. Corporate Guardianship

22. Does IP have the capacity to make his / her own decisions? Is there another substitute medical decision- maker? Can the IP create a Health Care Proxy and appoint a health care agent? Will the MHL Article 80 Surrogate Decision-making Panels suffice for medical decision-making? Is end of life decision-making required? Is Guardianship necessary?

23. Does the IP have MR / DD? Can the IP make some, but not all decisions? Is a tailored guardianship more appropriate? Does the IP want to have a guardian? Who will be the guardian? Guardianship for life, regardless of the IP’s circumstances, program or residence Which Type of Guardianship?

24. Established as a separate not-for-profit corporation Mission is to serve as guardian of the person Both Article 81 and Article 17-A guardianships Sponsored by CP of NYS For IPs who receive services from a CP of NYS Affiliate CP of NYS Guardianship Program

25. Structure: Board of Directors – statewide, volunteers, staff, professionals, interested persons Local CP of NYS Affiliate creates a Guardianship Committee Local Guardianship Committee designates an advocate for the IP CP of NYS Guardianship Program

26. Board develops policies and procedures, standards and protocols Board and Local Committee develop a guardianship plan for each individual served. Board authorizes Local Committee to act on its behalf CP of NYS Guardianship Program

27. Affiliate identifies a potential IP who needs a guardian. Local Committee becomes authorized to act. Affiliate / Local Committee works with Board to develop the plan Affiliate / Local Committee petitions the local court to appoint CP of NYS GP as guardian CP of NYS Guardianship Program

28. Board and Local Committee work together to determine which powers will be delegated to the Local Committee Local Committee appoints advocate – “on the ground” person responsible for providing guardianship services to the IP Reports back to Local Committee and Board CP of NYS Guardianship Program

29. Process and procedures designed to be flexible Taking into account the resources of the local Affiliate Procedures in place to ensure independence of Local Committee and Advocate Ability to refuse consent with impunity CP of NYS Guardianship Program

30. Development in process Come join us. CP of NYS Guardianship Program

31. For copies of this PowerPoint, please visit www.stevemosenson.com Follow link to CP of NYS Guardianship Corporation Donna Lamkin Steve Mosenson Thank you