Adult Guardianship in Illinois: Empowering You for Your Role

This training is provided by the Illinois Guardianship and Advocacy Commission in consultation with the Illinois courts, State and national guardianship organizations, public guardians, advocacy organizations, and persons and family members with direct experience with adult guardianship.

Welcome to Adult Guardianship in Illinois

• You are taking this training because you have been appointed as the guardian of the person for an adult with a disability.

• This training is intended to provide you with basic information to help you fulfill the role of a legal guardian and support the good work you have undertaken.

• You should review the resources page to get additional information about agencies providing disability related services and information about the topics covered here.

Let's Start with Background Information:

• The Illinois Probate Act is the law that deals with guardianship for adults with disabilities. Most of the information in this training comes from the Probate Act.

• Article XIa of the Illinois Probate Act is where you can find the law that deals with guardianship for adults with disabilities. It is in the Illinois Compiled Statutes (ILCS) at 755 ILCS 5/11(a).

• If you search for 755 ILCS 5/11(a) on the internet you will find it on the Illinois General Assembly's website, www.ilga.gov.
• 755 ILCS 5/11(a)

This Training is Required

This training is required within one year of your appointment as a guardian of an adult-person with a disability and you must file the certificate of training completion with the court that appointed you. A certificate of completion will be provided to you upon completion of this training.

See

• Section 12(e) of the Illinois Probate Act, 755 ILCS 5/11a-12(e), and
• Section 33.5 of the Guardianship and Advocacy Act, 20 ILCS 3955/33.5

Exception: The training requirement does not apply to guardians who have a guardianship order which excuses them from taking this training.

Table of contents

This Training Covers:

• Module 1 Your Role as Guardian
• Module 2 Making Decisions for an Adult with a Disability: What Does the Probate Act Say?
• Module 3 Types of Decisions You May Need to Make
• Module 4 Your Rights and Responsibilities as a Guardian
• Module 5 Your Responsibility to Return to Court
• Module 6 Rights Kept by the Person with a Disability
• Module 7 Abuse, Neglect and Financial Exploitation
• Resources

This Training Will Not Cover

• Estate Guardianships;
• Guardianship of Children (age 0-17);
• Temporary Guardianships that expire 60 to 120 days after they are ordered.

Legal Advice Disclaimer:

This training is for educational purposes only and is not intended to provide legal advice. When legal advice is required, an attorney who practices in the area of adult guardianships should be consulted.

Click Here to Find a Lawyer

Module 1
Your Role as a Guardian of an Adult with a Disability

What is a Guardian of an Adult Person with a Disability?

• A guardian is a person who has the legal authority to make decisions about the care for a person with a disability.
• A guardian is a person who has the legal duty to make decisions about the care for a person with a disability.
• Making decisions about the care of a person with a disability includes managing the person's affairs.

What is a Ward?

For the purposes of this training, a ward is a person who is under the care of a guardian because a court has determined that the ward has a disability that interferes with the ward's ability to make certain decisions on their own.

Examples of Types of Long-term Guardianships of the Person

There are different ways that you might be appointed and serve as a Guardian in Illinois:

You Have Just Been Appointed Guardian for an Adult Person with a Disability, Now What?

When you get appointed as the guardian you are going to get certain documents you should keep in a safe place.

• Court Order: Appoints you as the guardian and tells you, and everyone else, what powers you have and what powers you do not have as the guardian acting on behalf or your ward;
• Letters of Office: Describes the type of guardianship you have, a certified copy of this document is typically what people want to see to prove you are the guardian of your ward;
• Oath: You swear in writing to follow all the guardianship laws and carry out all the duties that come with being a guardian for your ward;
• Bond: you pledge in writing to be liable for twice the value of the person's estate if you act in bad faith and cause the ward some  type of injury or loss.

What Do I Do Next?

Make sure you provide copies of the Letters of Office to the people and organizations providing care and services for the person with a disability, such as:

• The ward's physician and any other care-giving providers;
• The Independent Service Coordination agency, (ISC, sometimes called PAS)  arranging for adult services for your ward;
• Residential programs, such as, group homes and community integrated living arrangements, where your ward may live;
• Vocational programs, where your ward receives work-based training and experience;
• Agencies providing benefits, like the Social Security Administration and the Department of Public Aid which provide financial assistance and other benefits to your ward;
• Special Education Programs- provided by your ward's school.

Guardians Must Be Mindful

Even though you may be a family member, such as a parent of an adult person with a disability:

• Your role as guardian is a special legal relationship with legal responsibilities that are different from your role as parent or other family member;
• You must comply with the Probate Act and the court order appointing you as guardian;
• Your actions as the legal guardian of a ward are accountable to the court.

Quiz 1

True or False:

A guardian of an adult person with a disability has the same powers and duties as a parent has to manage the rights and property of their child.

• True
  • Incorrect, Please Try Again
• False
  • Correct, a guardian of a person with a disability only has the powers and duties to manage the ward's affairs given by the court order and guided by the Probate Act.

You have been appointed as guardian; which of the following documents will you receive?

• Court Order, Letters of Office, and Probate Order
  • Incorrect, Please Try Again
• Court Order, Letters of Office, and an Oath and Bond
  • Correct, you will receive - Court Order, Letters of Office, and an Oath and Bond (Note some counties charge a small fee for a copy of the court order and certified letters of office.)
• Letters of Office, Oath of Letters, and Probate Order
  • Incorrect, Please Try Again

• Oath of Office, Letters of Probate, and Court Order
  • Incorrect, Please Try Again

Module 2
Making Decisions for an Adult with a Disability: What Does the Probate Act Say?

Decisions Can be Difficult, Personally and Legally; Considerations for Guardians to Follow when Making Decisions for their Wards
The Probate Act requires you to consider the following when making decisions for your ward:

• Will this decision help the person become more independent?

Example: Is the person able to live semi-independently in an apartment with supportive services instead of a group home with 24-hour supervision?

• Will this decision help the person with their self-reliance?

Example: Is the person able to learn to take the bus to the store instead of having to depend on someone for a ride?

• Will this decision be the least restrictive option for the person?

Example: Can the person learn to work at a job in the community with the help of a job coach instead of working in a workshop with constant supervision?

• Is this decision focused on the person with the disability?

Example: Is the decision based on what the person wants and needs instead of what the guardian wants and needs?

First Things First

First, check your court order regarding the type of decisions you are permitted to make. If you have a plenary guardianship order, you will be able make all decisions that are allowed by law. If you have a limited or temporary guardianship order, the order will specify what decisions you are authorized to make.

Second, know the Probate Act standards for decision-making. The Probate Act requires you to make decisions in one of two ways:

1. Primarily, decisions are to be made using Substituted-Judgment decision making.
2. Alternatively, decisions can be made using Best-Interest decision making if you are unable to use Substituted-Judgment to make decisions for your ward.

Tier 1: Substituted-Judgment Decision Making

You are to act as the substitute for the person with a disability, meaning, you do what your ward would do if your ward could make the decision on their own. You decide what your ward would want based on your ward's past statements, interests, religious beliefs, preferences, past behavior, etc.  Note: the decisions you make for your ward may not to be the same decisions you would make for your self.

Example: The guardian might want to consent to a blood transfusion to save the life of their ward, but the guardian should not give consent for a blood transfusion if the guardian knows that the transfusion is against the ward's religious beliefs, or if the ward otherwise objects to blood transfusions. Based on this scenario, a guardian who uses Substituted-Judgment decision making, should not consent to a blood transfusion transfusion.

Substituted-Judgment decision making must be applied whenever possible. Best Interest decision making should only be used when Substituted-Judgment is impossible.

The point: People have the freedom to make their own decisions based on their personal beliefs, thoughts and abilities. This freedom includes the right to make bad decisions, like: overeating, hanging out with questionable friends, and wearing jeans to a formal dinner. Guardians must be mindful that they cannot use their position as guardian to impose their will on an adult who has a will of their own - even if the adult ward is their child.

Tier 2: Best-Interest Decision Making

When Substituted-Judgment decision making is impossible, you need to weigh all the risks and benefits of making the decision in question, and you choose what is in your ward's best interest.

Example: Your ward cannot communicate with you in any way. You do not know what your ward would want you to decide and you cannot find out. After talking to all the professionals and family members involved, you weigh all the risk and benefits and chose what is in your ward's best interest. With the blood transfusion example, consenting to a blood transfusion may be appropriate because the guardian has no knowledge of what their ward would want and information obtained by the guardian might lead them to conclude the blood transfusion is in their ward's best interest.

Your Decision Making Requires Informed Consent

• In non-emergency situations, physician and other providers must obtain informed consent (permission) from the guardian before treatment or services are provided for a ward under guardianship.
• The guardian is entitled to get the same information their ward would receive if their ward didn't have a disability (Think, medical records, and information about benefits and side effects of a given medication, etc.).
• HIPAA allows healthcare providers to share information with guardians.
• The guardian is entitled to have sufficient information to give informed consent for treatment or services, including:

1. The proposed treatment;
2. The risks, benefits and side effects of treatment;
3. The expected outcome of treatment;
4. Any alternatives to the treatment and the risks and benefits of those alternatives.

Be Mindful

Your ward's disability may not limit their potential independence as much as you may believe - like you - your ward wants to live life to the fullest. You can and should, help your ward realize the possibility of living life to its fullest.

Put another way - You may not think your ward can successfully do something like live alone in an apartment, but you should help and encourage them to try if it is a reasonable possibility, even when you believe your ward will fail. People with disabilities can and do fail at attempts towards independence, but they have a right to try and try again. It is important to balance keeping your ward safe while offering opportunities for independence.

Quiz 2

Which of the following statement is True?

• There are two types of decision making required by the Probate Act and a guardian may use either one as long as they get informed consent.
  • Incorrect, Please Try Again
• Guardians always will make decisions based on the Probate Act's Best-Interest decision making process.
  • Incorrect, Please Try Again
• Guardians only need to obtain informed consent when they are making decisions using substituted-judgment decision making.
  • Incorrect, Please Try Again!
• Guardians should use substituted-judgment decision making whenever possible, and if they cannot, they have to use the best-interest decision making process.
  • Correct, Guardians should use substituted-judgment decision making whenever possible, and if they cannot, they have to use best-interest decisions.

True or False:

John is 55 year old single man. Three years ago John was in a car accident and was badly injured. He incurred a traumatic brain injury that has severely limited his ability to function. Recently, John was able to move into a one bedroom apartment with supportive services. His sister Mary is his guardian. John has made friends with his next door neighbor Nancy and they have mutually decided that they want to have a romantic relationship. John's sister Mary is a religious person and is concerned this romance could lead to sex outside of marriage because John has a past history of sexual relationships outside of marriage. Also, Mary does not like Nancy because she uses bad language all of the time. Mary decides to move John to an all male residential program for his well being.

Under these circumstances, the guardian's actions are appropriate?

• True
  • Incorrect, Please Try Again
• False
  • Correct! A guardian should not make decisions for their ward based upon their personal beliefs. They should make decisions for their ward using Substituted-Judgment decision making.

Module 3
Types of Decisions You May Need to Make

Decision Types

• General
• Medical
• End-of-Life
• Residential Placement
• Programs and Services
• Mental Health Services

General Decisions as defined by the Probate Act

General Decisions are decisions necessary to provide support, care, comfort, health, education, maintenance, and professional services. These decisions should align with your ward's needs as determined by assessments and treatment planning.

Medical Decisions

There is a law called the Illinois Health Care Surrogate Act which says "all persons have a fundamental right to make their own medical decisions." People with disabilities have an absolute right to accept and reject medical care even if they are under guardianship so long as they are able. Your ward has a right to refuse medications, medical treatment and surgical procedures.  However, if your ward's doctor determines your ward is unable to make medical decisions on their own you will need to step in as guardian for your ward and make the necessary medical decisions and give informed consent. This includes end-of-life decisions where administration of and withholding of life sustaining treatment is involved.

Sterilization

• A guardian requires court approval prior to sterilization of a ward.
• The guardian must file a petition with the court to seek approval.
• The court will hold a hearing to determine the ward's ability to understand the link between sexual activity and reproduction and what it means to be sterilized.
• The court will not approve sterilization if the ward has the ability to understand these things and does not want to be sterilized. On the other hand, the court will approve sterilization if the ward understands these things and wishes to be sterilized. If the ward lacks the ability to understand these things, the court will hold a hearing to determine if the ward should be sterilized.

Residential Placement

The court order appointing a guardian needs to say whether or not the guardian has the "authority to make residential placement" or the "authority to place their ward in a specific facility." If the order does not have this authority and a residential placement is needed, the guardian must return to court and ask the court to order residential placement authority.

If guardians have residential placement authority, they need to make residential decisions using the Substituted-Judgment decision making process, taking their ward's wishes into consideration and placing their ward in a residence their ward would have chosen for their self. If this is impossible, then the guardian will have to use the Best-Interest decision making process. (Note: the Office of State Guardian has statutory authority to make residential placements.)

Programs and Services

Guardians can make decisions regarding various programs and services in which their wards participate (i.e. Special Olympics and vocational training).

Guardians must apply Substituted-Judgment decision making when possible. Guardians must make decisions that maximize their ward's opportunities for independence and self-reliance. Be mindful that all decision-making should be focused on the wants and the needs of the person with a disability.

Mental Health Services

Guardians for persons with mental illness cannot:

Force their ward to be admitted to a mental health facility and they cannot consent to their ward being admitted to a mental health facility;

Force their ward to get mental health treatment, including medication and electroconvulsive therapy (ECT).

Guardians for persons with mental illness can:

Seek a court order with the assistance of their State's Attorney's Office to have their ward hospitalized and or treated for their mental illness;

Call an ambulance or the police to have their ward taken to a hospital if they believe it is necessary;

Fill out and file a court petition for involuntary admission to a mental health facility;

Consent to psychiatric medications IF their ward is not objecting to the medication and the guardian is able to give informed consent after consulting with the prescribing physician.

Quiz 3

The quiz questions will be based on the following scenario:

Sue has a long history of mental illness. Her father, George, is her guardian. George went to visit Sue at her apartment because Sue's employer called him to let him know that Sue had not been to work for a few days. Upon entering Sue's apartment, George found her hiding under her bed. Sue said that pink elephants had been telling her to hide under her bed to protect herself. It was obvious to George that Sue was in distress and had been under her bed for days. George could not get Sue out from under her bed. He called an ambulance to take her to the hospital. Sue was evaluated and admitted to the hospital's psychiatric ward. George told the hospital that he was her guardian and he believed she had not been taking her medication. George got help from the hospital's social worker and filled out a legal petition to have his daughter's mental illness treated in the hospital. George gave Sue's psychiatrist permission to give Sue the same medications she took at home if Sue would agree to take those medications. A court hearing was held at the hospital and the judge ordered Sue to stay in the hospital for mental health treatment. She took her medications voluntarily and was discharged from the hospital after a couple weeks. Upon discharge, George decided it would be best if Sue had more supervision. He had Sue move in with him despite Sue's repeated objections. Sue was able to return to her job but says she wants to move back to her apartment.

True or False:

George should have gone to the State's Attorney's Office to seek help with filing a petition to hospitalize Sue rather than calling an ambulance?

• True
  • Incorrect, Please Try Again
• False
  • Correct, it was better that George called the ambulance because Sue was in crisis and needed immediate treatment. Going to the State's Attorney and filing a petition would take too long and is not an appropriate course of action in emergency situations. Getting Sue to the hospital quickly was the right decision.

True or False:

Let's say George knew the risk and benefits of Sue's home medications and that those medications were the most effective treatment with the fewest side effects, was it okay for George to give Sue's psychiatrist permission to give her medication for mental illness without getting a court order if Sue was not objecting to taking the medications?

• True
  • Correct, It WAS okay for George to give Sue's psychiatrist permission to give her medication for her mental illness without getting a court order because she did not object to taking it.
• False
  • Incorrect, Please Try Again

True or False:

After Sue was hospitalized, it was appropriate for George to have her move in with him so he could take care of her?

• True
  • Incorrect, Please Try Again
• False
  • Correct, it was NOT appropriate for George to have her move in with him so he could take care of her. Sue objected to moving in with George. Sue is a grown woman with a job and her own apartment. George should have moved her back into her own apartment. If George had concerns that Sue would once again stop taking her medications he could seek the help of a social service agency (such as those listed in the Resources link at the end of these slides). A father's concern that his daughter needs help is not a reason to deprive her of her independence.

Module 4
A Guardian's Rights and Responsibilities

You are responsible for giving informed consent to many people who will provide care and services for your ward. In order to do that you will have to exercise your rights.

You have a right to:

• participate in treatment and care planning;
• access and talk to professionals involved in your ward's care;
• look at, and obtain, a copy of your ward's records including medical records (this is allowed under HIPAA);
• access your ward's residence;
• be notified of incidents, injuries and changes in your ward's condition;
• authorize a representative payee for Social Security benefits.

Quiz 4

True or False:

A good way to stay informed about your ward is to exercise your rights to participate in care planning, speak with healthcare providers and review medical records?

• True
  • Correct!
• False
  • Incorrect, Please Try Again

Module 5
Your Responsibility to Return to Court

The court that granted guardianship may require you to file a written report about the person with a disability. The court may require this every year; the report includes:

1. the current mental, physical, and social condition of the ward and the ward's minor and adult dependent children;
2. their present living arrangement, a description and the address of every residence where the ward lived during the reporting period and the length of stay at each place;
3. a summary of the medical, educational, vocational, and other professional services given to them;
4. a summary of the guardian's visits with and activities on behalf of the ward and the ward's dependent children;
5. a recommendation as to the need for continued guardianship;
6. any other information requested by the court or useful in the opinion of the guardian.

Filing documents with the court.

• Illinois courts require all paperwork to be electronically filed through an e-filing system.
• Waivers may be granted by the court that allow paper filing.
• Your circuit clerk for your county can provide you with information on how to e-file and/or obtaining a waiver from the court.
• The Illinois Supreme Court website has an e-filing guide. See: http://illinoiscourts.gov/CivilJustice/Resources/Self-Represented_Litigants/self-represented.asp

You Have a Responsibility to Return to Court To:

• get authority for residential placement unless that authority has been granted by the court in the guardianship order;
• get consent authority for any procedure that will permanently prevent your ward from having children except in emergency situations to preserve life or prevent serious impairment to the ward's health;
• make changes to, revoke, or resign from the guardianship;
• fully or partially restore a ward's decision making rights;
• have your ward involuntarily hospitalized or involuntarily treated for mental illness.

Module 6
Rights Kept By the Person with a Disability Under Guardianship

Persons with a disability under guardianship keep the right to make certain decisions, including:

• The right to refuse mental health treatment;
• The right to engage in sexual activity;
• The right to vote;
• The right to marriage;
• The right to get counseling and psychotherapy;
• The right to have input into decision-making;
• The right to have services that are 1) least restrictive, 2) person-centered, and 3) maximize independence.

Persons with a disability have a right to refuse mental health treatment

This right to refuse includes:

• Hospitalization;
• Outpatient treatment;
• Psychotropic medication; and
• Electroconvulsive treatment (ECT).

There are only two ways a person can be given mental health treatment against their will: 1) in extreme emergencies, and 2) with a court order.

If a ward has a mental health emergency, the guardian should call an ambulance or the police. The guardian has the authority to seek a court order and may seek assistance from their local State's Attorney or a hospital social worker to obtain involuntary mental health treatment for their ward.

Persons with a disability have a right to have sex

• The ward's right to have sex includes their right to sexual education and their right to privacy.
• The person with a disability must be able to give and obtain consent from their sexual partner. The disabled person only needs a basic understanding of the risks, benefits and consequences of a sexual relationship to exercise this right .

Persons with a disability have a right to vote

Persons with a disability may vote just like anyone else, if they are legal residents and have the desire and ability to vote.

Persons with a disability have a right to get married

• Persons with a disability have a right to get married as long as they have the ability to understand the nature of marriage.
• A guardian cannot stop a marriage of their ward without a court order.
• A guardian can pursue a divorce for their ward, but must get court approval before filing any action for divorce.

Persons with a disability have a right to get counseling and psychotherapy

Persons with a disability have a right to get counseling or psychotherapy for a total of five sessions at 45 minutes per session without their guardian's consent or notice. After the first five visits, a guardian's consent is required to continue counseling or psychotherapy .

One of the purposes of this law is to ensure that victims of sexual abuse and sexual assault can privately obtain some counseling.

Persons with a disability have a right to have a say in decisions being made about them

As we learned in the previous section, the Probate Act's preferred decision making process is Substituted-Judgment. (The guardian walks in the shoes of the ward to make decisions for the ward). Always include your ward in the decision making process. Learn to communicate with your ward. Find out what they want and incorporate that in your decision making process.

Every Decision You Make Should Start with These Three Questions

• Is this the least restrictive form of care or service available?
• Am I making a person-centered decision?
• Will this decision maximize my ward's independence?

Quiz 5

Which of the following are true about disabled peoples' rights?

• Persons with a disability have a right to have sex.
  • Incorrect, Please Try Again
• Persons with a disability have a right to get married.
  • Incorrect, Please Try Again
• Persons with a disability have a right to vote.
  • Incorrect, Please Try Again
• All of the above.
  • Correct!

Module 7
Abuse, Neglect, and Financial Exploitation

Abuse of Adults with a Disability is the Least Recognized Form of Family Violence.

Abuse takes many forms, and in most cases victims are subjected to more than one type of mistreatment. In Illinois, 54% of adult abuse reports allege financial exploitation; approximately 23% allege physical abuse; 52% allege active or passive neglect; and 43% allege emotional abuse.

See Adult Protective Services Website

Abuse

• Physical abuse: causing the infliction of physical pain or injury to a person.
• Sexual abuse: touching, fondling, or any other sexual activity with a person when the person is unable to understand, unwilling to consent, threatened, or physically forced.
• Emotional abuse: verbal assaults, threats of abuse, harassment, or intimidation and threats that force a person to act against their will.
• Confinement: restraining or isolating a person for other than medical reasons.

Neglect

• Passive neglect: the failure by a caregiver to provide a person with the necessities of life including, but not limited to: food, clothing, shelter, or medical care, because of failure to understand the person's needs, lack of awareness of services to help meet needs, or lack of capacity to care for the person.

• Willful deprivation: willfully denying assistance to a person who requires medication, medical care, shelter, food, therapeutic device, or other physical assistance, thereby exposing that person to the risk of harm.

Financial Exploitation

• Financial exploitation: the misuse or withholding of a person's resources to the disadvantage of that person and/or the profit or advantage of another person.

Reporting and Investigating Abuse, Neglect and Financial Exploitation

• There are numerous agencies that investigate reports of abuse, neglect, and financial exploitation. Most of them are listed in the resource list for guardians.
• Almost all service providers and healthcare professionals are required by law to report abuse, neglect, and financial exploitation to the authorities immediately.
• Guardians should be notified of abuse, neglect, and financial exploitation allegations as soon as possible.

Quiz 6

Passive Neglect Can Be Caused By

• Failure to understand the person's needs.
  • Incorrect, Please Try Again
• Lack of awareness of services to help meet needs.
  • Incorrect, Please Try Again
• Lack of capacity to care for the person.
  • Incorrect, Please Try Again
• All of the above.
  • Correct!

Key Points to Remember About Guardianship

• Guardianship is a legal relationship. Guardians are accountable to the court and guardians are required comply with the Illinois Probate Act.
• The guardianship court order defines your authority as a guardian.
• The Probate Act guides a guardian's decision making. It requires guardians to use Substituted-Judgement decision making when possible, and Best-Interests decision making when Substituted Judgement is not possible.
• The Probate Act requires person-centered decisions which are the least restrictive alternative. Your decisions must maximize your ward's independence and self-reliance.
• Guardians have rights and responsibilities.
• Persons with a disability have rights even if they are under guardianship.

Resources

• There are numerous resources available if you have questions about disability services, disability related laws and guardianship.
• The following link will take you to slides that provide contact information for guardian's who need information and resources: Guardianship Resources

By clicking the "I certify" button below, I certify that I have completed this training as required by Section 33.5 of the Illinois Guardianship and Advocacy Act which explains the responsibilities of the guardian of the person and the rights of the person under guardianship. I understand that making a false statement on this form is perjury and has penalties provided by law under 735 ILCS5/1-109.

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