Presented By: Tai Tomasi and Scott Lyon Staff Attorneys, Disability Rights Iowa

1. Presented By: Tai Tomasi and Scott LyonStaff Attorneys, Disability Rights Iowa Individual Rights and Substitute Decision Making

2. Fundamental and Basic Human Rights Right to Choice, Self-Determination and Informed Consent

3. Fundamental Rights • Constitution and U.S. Supreme Court rulings enumerate the rights of the individual • Bill of Rights (Amendments I-IX) • First Amendment protects the fundamental civil rights of free speech, press and assembly • Right to equal protection—14th Amendment (due process) • Right to Vote—15th Amendment • Others: • Right to travel • Right to privacy (which includes marriage, use of contraceptives, abortion) • Right to live in community integrated setting (Olmstead)

4. Basic Human Rights • Choice “Ability is of little account without opportunity.” -NAPOLEON BONAPARTE • Question: Who is able to make choices? • Answer: EVERYONE

5. Right to Make Choices …. Even sometimes bad ones Image Description: Somber looking young woman with several dozen fresh tattoos of small stars covering the left side of her face

6. Not all bad decision making leads to substitute decision makers. Image description: Enclosed toilet stalls in a public restroom, where the door intended to ensure privacy was installed higher than the toilet, so that anyone sitting on the toilet is clearly visible.

7. Substitute Decision Making in Iowa Rights of an Individual with Substitute Decision Makers

8. Substitute Decision Making Assistance that becomes necessary when someone needs help making financial or personal care decisions.

9. Least Restrictive Decision Making According to Iowa Code Chapter 231E, the Substitute Decision Maker Act, “the general assembly finds that a process should exist to assist individuals in finding alternatives to substitute decision making services and less intrusive means of assistance before an individual’s independence or rights are terminated.”

10. Who needs a Guardian Or Conservator? • A person may have an impairment but not be in need of a guardian or conservator. A person’s need for decision making support or for a substitute decision maker will vary. It will depend on the person’s ability to make reasonable decisions about health, safety and personal needs. There may be formal and informal support from family or friends or other resources. (From Iowa Legal Aid’s Determining if Guardianship or Conservatorship is Necessary)

11. Least Restrictive Substitute Decision Makers Financial Management • Self-directed • Third party assistance • Representative Payee • Financial Power of Attorney • Limited Conservatorship Least restrictive Most restrictive

12. Financial Management • Representative Payee • An individual or organization that receives a federal benefit check for someone who cannot manage his or her money. • The authority of the payee is limited to managing only the federal benefit(s) • Benefits used to meet the beneficiary’s basic needs: • Food, shelter, clothing, medical care, personal comfort items • Managing and conserving funds, paying previous debts, setting aside funds for personal needs

13. Financial Management, cont. • Financial Power of Attorney • A written document that gives someone the authority to make financial decisions on behalf of another. • Can take effect immediately, at some point in the future, or both. • No court oversight or annual accounting requirements (but see Iowa Uniform Power of Attorney Act) • Can be revoked or amended at any time

14. Financial Management, cont. • Conservatorship • Court-authorized relationship whereby one person assumes the responsibility for the property and finances of another. • In the case of conservatorship, the ward (protected person) is determined incompetent(also can no longer execute a financial POA) • Conservator must file initial and annual reports with court • Court order to amend or terminate

15. Least Restrictive Substitute Decision Makers Personal Care • Self-directed • Third party assistance • Health Care Power of Attorney • Limited Guardianship Least restrictive Most restrictive

16. Personal Care • Health Care Power of Attorney • A written document that gives someone the authority to make medical and health care decisions on another person’s behalf. • Takes effect when individuals are unable to make decisions for himself/herself. • No court oversight; can amend or revoke at any time (but see Iowa Uniform Power of Attorney Act)

17. Personal Care, cont. • Guardianship • Court-authorized relationship whereby one person assumes the responsibility for the physical custody of another. • In the case of a guardianship, the ward (protected person) is determined incompetent. • Limited Guardianships—in ALL cases, the court must consider whether a limited guardianship is appropriate (In re Hedin, Iowa Code §633.551(3), 633.635, and 633.637))

18. Guardianships in Iowa Rights of an Individual Under Guardianship

19. Important caveat: • The law in this area may be about to change. • HF610, SF424 pending in the state legislature. HF610 passed the house unanimously two weeks ago. • If passed, will overhaul guardianship and conservatorship in Iowa, and provide significantly greater protection for respondents and protected persons.

20. What is a guardianship? • A guardianship is one form of substitute decision making which is established through a legal proceeding. • A guardianship is established to manage an individual’s care. • Guardianship deals with non-financial decisions such as where the individual lives and what type of medical care he or she gets. Iowa Code § 633.551 et seq.

21. What is the standard in Iowa? • Best interest vs. Substituted Judgment? Preferred standard: Substituted Judgment Best interest: consult with protected person, weigh benefit/harm, consider rationale for deciding a certain way.

22. A guardian may make decisions about: • Providing care, comfort, and maintenance (food, clothing, shelter, health care, social and recreational activities, training and education) • Taking care of personal effects (clothing, furniture, vehicle) • Assist the ward in maximizing self-reliance and independence • Ensuring the ward receives necessary emergency medical services • Ensuring the ward receives necessary professional care (counseling, treatment, or services) • Placing reasonable time, place, and manner restrictions on communication, visitation, interaction with others Iowa Code §633.635 (a)-(f)

23. What if Guardian not performing duties or interfering with services? • Guardian failed to sign releases and revoked releases for probation officer • Delays in communication with professionals for his placement, treatment and receipt of services • Refusal to authorize a change in ward’s medication despite Dr. recommendation • Result: Court removed mother as guardian In re Guardianship of Hinkhouse, 840 N.W.2nd 728 (Iowa Ct. App. 2013)

24. Court Approval Required Guardians need court approval for the following: • Changing the ward’s permanent residence to a more restrictive setting • Consent to withhold or withdraw life sustaining procedures • Arranging for major elective surgery or other non-emergency major medical procedures • Sterilization Iowa Code §633.635(2)(a)-(d)

25. Sterilization • In the Matter of Guard. And Conserv. of Kennedy (Iowa Sup. Court April 18, 2014) • Clarification that vasectomy is “major elective surgery” or “nonemergency major medical procedure” requiring court approval • Court stated vasectomy is not a routine procedure • Right to procreate is a fundamental right • “Serious doubts about constitutionality of a statute that allowed a guardian to arrange for a ward to undergo a vasectomy without any court involvement”

26. Court Approval Required (cont’d) • [To deny] all communication, visitation, or interaction by an adult ward with a person with whom the adult ward has expressed a desire to communicate, visit, or interact or with a person who seeks to communicate, visit, or interact with the adult ward. • Denial order requires guardian to show good cause. Iowa Code §633.635

27. Rights of the Protected Person • A person under guardianship keeps any rights that are not taken by the court. • This means the court must make a specific finding that a ward is losing some particular rights. • Question? Get the court records. • Iowa Courts Online -> Trial court/case search by name ->Look for cases beginning with “GCPR” • Call county courthouse for copies of documents

28. The Ward Retains the Right: • To sign a Will • To vote • To marry (unless finding that ward lacks capacity to contract for a valid marriage) • To have children

29. Rights of the Ward, cont. • The guardian should assist the ward to maximize self reliance, independence, and honor the ward’s wishes (Iowa code §633.635(c)) • In doing so, the ward should participate in making decisions about: • Smoking • Organ donation • Right to communicate, visit, interact with others (subject to reasonable restrictions).

30. Other rights under the law • In addition, the ward has certain rights in the context of a guardianship. The ward has: • The right to appeal orders issued by the judge • The right to be represented by an attorney • The right to have an attorney appointed • Statutory right to be present at hearings • In Matter of Guardianship of Hill, No. 14-0497, 2015 WL 576061 (Iowa Ct. App. Feb. 11, 2015) • The right to try to change or end the guardianship

31. Right to Legal Representation • Right to an attorney separate from a GAL • GAL advocates for best interests of ward, whereas attorney advances wishes of ward (In re Guardianship Griesinger, 804 N.W.2d 527 (Iowa Ct. App. 2011)) • Right to an attorney to terminate the guardianship/conservatorship • Ward is not considered incompetent to challenge terms of the guardianship (In re Guard. And Conserv. of Johnson, 764 N.W.2d 784 (Iowa Ct. App. 2009))

32. Practical considerations in guardianship • Procedural requirements • Petition—definition of incompetence • decision making capacity that is so impaired that the person is unable to care for person’s personal safety, provide for necessities such as food, shelter, clothing, or medical care, without which physical injury or illness may occur. (Iowa Code 633.3(23)) • Note: This is not an adjudication that the ward is of unsound mind. ((Iowa Code 633.636) i.e. Difference in the right to execute a will versus right to enter into a contract.

33. Practical considerations in guardianship cont. • Burden of proof—on the petitioner to establish incompetency (Iowa Code §633.551(1)(2)) • Voluntary Petition for Guardianship • Third Party Assistance—in determining competency, court shall consider the effects of third party assistance in meeting the needs of the proposed ward. (Iowa Code §633.551(4))

34. Least Restrictive Options • Limited Guardianships—in ALL cases, the court must consider whether a limited guardianship is appropriate (In re Hedin, Iowa Code §633.551(3), 633.635 and 633.637)) • Review for other least restrictive options first • Power of Attorney • Third Party Assistance

35. Specific Issues in Restrictive Decision Making Food/Diet, Relationships, Sexuality and Medication

36. Food/Diet • Question: Does a guardian or substitute decision maker have the right to restrict an individual’s food or diet?

37. Food and Diet cont. • Answer: • Is there a medical reason to restrict? • A doctor’s “order” is not a court order • Should work with the individual to advocate for self-determination to the extent possible • Is there an imminent risk of harm? Does the person understand it? • What does enforcement of a restriction look like?

38. Question: Can you restrict an individual’s right to smoke or drink alcohol?

39. Friends and Relationships Image: Group of friends smiling at the camera

40. Relationships • Constitutional Right to Free Association • Individual’s expressed preference • Guardianships should be narrowly tailored and the • least restrictive approach should be adopted • when limiting an individual’s control over his/her life • Denial of all contact with particular person(s) requires court order. • Right of ward to communicate, interact, visit with others is enumerated in Iowa Code 633.637A.

41. Sexuality • Develop friendships and emotional and sexual relationships where they can love and be loved and begin and end relationships as they choose • Dignity and respect • Privacy, confidentiality and freedom of association • Education!

42. Sexuality…basic rights • have the door to their room closed when they want it closed • expect that people will knock before entering the room • have toileting/hygiene needs met in privacy

43. Cont. • Right to sexual expression and education reflective of their own cultural, religious and moral values and of social responsibility • Education and information to make informed decisions about reproduction, marriage and family life, abstinence, safe sex, sexual orientation, and sexual abuse • Protection from sexual harassment and physical, sexual and emotional abuse

44. What to Do if Rights Violated? Modifying or Terminating Substitute Decision Makers

45. Powers of Attorney • Can be revoked at any time • Communicate the intent to revoke • Recommended to be in writing • Attorney in fact • Health Care provider

46. Representative Payee • Not given enough spending money • Talk with rep payee • Ask to be shown how much is being spent and why • Call SSA and report • Can ask SSA to switch payees • Tell present payee you plan to ask someone else • Person or organization to be new payee must file an application at a Social Security office

47. Representative Payee Cont. • To be own payee (no third party as rep payee) If you have a representative payee because of a physical or a mental disability, in order to become your own payee, you must show SSA that you are now mentally and physically able to handle your money yourself. You could provide: • A doctor's statement that there has been a change in your condition and that the doctor believes you are able to care for yourself; or • An official copy of a court order saying that the court believes that you can take care of yourself; or • Other evidence that shows your ability to take care of yourself. • Note:  If SSA believes your condition has improved to the point that you no longer need a payee, we may reevaluate your eligibility for disability payments. (from FAQs for Beneficiaries Who Have A Payee on www.ssa.gov)

48. Guardianships/Conservatorships • Can ask for judicial review to modify or limit • Can petition to terminate • Must show ward has some capacity for decision-making • Guardian/Conservator can consent • If no consent, guardian has burden to show ward still meets criteria for guardianship/conservatorship • Court proceeding • Note: Ward can petition to terminate once every 6 months

49. Office of The Public Guardian • Re-established in 2014 • FKA Office of Substitute Decision Maker • Serves adults of all ages who need SDM but do not have access to one • Office of last resort • Intended to help Iowans avoid abuse, neglect, unnecessary institutionalization by SDMs • Contact Iowa Department on Aging for more info: 515-725-3333. IowaAging.gov

50. To Contact Us Disability Rights Iowa 400 East Court Avenue, Suite 300 Des Moines, Iowa 50309 Telephone: 515-278-2502 Toll Free: 1-800-779-2502 FAX: 515-278-0539 Toll Free TTY: 1-866-483-3342 Email: info@driowa.org Visit our webpage for more information and for links to our Facebook page: www.disabilityrightsiowa.org