What is it?

The Mental Health and Developmental Disability Act (MHDDA) gives certain rights to people who receive treatment for mental health or developmental disabilities.

What is its purpose?

To make sure that people who are receiving treatment for mental health or developmental disabilities:

• Are treated humanely,
• Are free from abuse and neglect, and
• Have as much freedom of choice as possible.

Who can benefit?

Illinois recipients of mental health and developmental disability treatment and services.

Your legal rights

Your personal freedom and property rights

This Section discusses your rights as a recipient of mental health treatment or developmental disability habilitation services.

Under the MHDDA, the term "mental health treatment" includes:

• Hospitalization,
• Partial hospitalization,
• Outpatient care,
• Examination and diagnosis, and
• Any other type of care aimed at improving your mental condition.

The term "developmental disability habilitation services" means residential care or other services provided by a facility to increase the level of functioning a person with a developmental disability. This includes:

• Day care,
• Sheltered living arrangements,
• Sheltered employment,
• Medical care, and
• Training.

Specifically, this Section discusses your rights under the Mental Health and Developmental Disabilities Code (MHDD Code). These rights apply whether you receive treatment from a private or a state-operated facility. These rights also apply whether you are receiving inpatient or outpatient care.

Retention of your legal rights

The MHDD Code establishes that you do not lose legal rights just because you receive treatment for mental health (MH) or a developmental disability (DD). Your rights as a citizen are guaranteed by the U.S. Constitution and the Illinois Constitution. Under the MHDD Code, those rights can be limited only to prevent serious harm to yourself or others

No presumption of legal disability

To consider someone legally disabled, the court must decide that the person is not able to safely manage his affairs. This can have serious consequences and can result in the loss of many legal rights. Nobody is legally disabled just because they get mental health or developmental disability services.

Only a court in a guardianship proceeding can decide you are legally disabled. A guardianship hearing must be held separately from any legal proceeding to involuntarily admit you to a mental health or developmental disability facility.

Appropriate and humane care

If you receive MH treatment or DD habilitation services, you should get the level of care that meets your needs. This care must be provided in the least restrictive environment. You should not receive inpatient health care if outpatient care will safely meet your needs. You should not experience abuse or neglect while receiving care.

If you receive residential care, the facility must set up an individual services plan to meet your needs.

An individual services plan is a written plan, which includes:

• An assessment of your treatment and habilitation needs;
• A description of the services you will receive, and the goals of each type of service;
• The role of your family in implementing the plan;
• The amount of time that you will need services to meet your goals; and
• The name of the person or persons responsible for providing the services required by the plan.

The facility must review the individual services plan regularly. The facility must update the plan as needed to make sure that it continues to meet your needs.

You may request a transfer to another facility. You must show that the other facility will provide more appropriate care. The facility director must hold a hearing within 7 days of receiving the request. If approved, the hearing committee will recommend transfer within 30 days. If the request is not approved, you may not submit another request for 180 days. However, you may appeal the decision.

Communicating with others

If you live in a MH or DD facility, you have the right to freely communicate with other people. This means that you can talk with other people in private, without staff present. This right includes communication by mail, telephone, and personal visits.

The facility must provide you with reasonable access to telephones. It must provide you with a place where you can meet with visitors in private. It must give you access to send and receive mail.

The facility must also provide you with writing materials and stamps, or funds to use the phone if you need it.

You have the right to communicate freely with government officials. The facility must promptly send any letters you write to the following people:

• The Governor,
• Members of the General Assembly,
• The Attorney General,
• Judges,
• State's attorneys,
• Officers of the Department, or
• Lawyers.

The facility staff is not allowed to read or inspect these letters. If you get any letters in reply, the facility staff must deliver them to you without first reading them.

The facility must permit a lawyer to enter and meet with you during regular business hours.

However, there are some limits upon your right to communicate with others. The facility can restrict your communication if it is necessary to protect you or others. The facility must notify you in advance about these restrictions. You can also request that the people with whom you are communicating know about the restrictions.

Example: The facility may have a rule that they x-ray incoming packages to keep out firearms.

You also have a right to choose an essential support person. This person can visit you outside of regular visiting hours. An essential support person:

• Assists with daily living activities, and
• Provides support, such as:
  • Physical,
  • Emotional,
  • Mental, and
  • Social support. 

Your personal property

If you live in a MH or DD facility, you have the right to keep personal property. The facility must give you a reasonable amount of storage space where you can keep your belongings. When you leave the facility, they must return all of your personal property.

The facility can prohibit items that could cause harm. The facility must give you notice about these prohibited items.

Example: The facility can prohibit residents from possessing or using knives or other weapons.

Handling your own money

The facility must let you use your own money as you choose. You have the right to deposit your money in a bank. Some institutions will maintain accounts for residents. If you deposit your money in an account with the institution, you are entitled to any interest earned. You are entitled to have all your money returned when the facility discharges you.

Some benefit programs require people with disabilities to appoint a payee to handle benefit payments. Social Security is an example of one of these programs. The facility and its employees cannot be your payee, unless you agree to this arrangement.

If you are under 18, your parents have the right to control the use of your money. If you have a legal guardian, a court can order the guardian to control your money.

Working for the facility

The facility cannot force you work for them. However, they can require you to perform your own housekeeping chores.

Example: The facility can have rules requiring you to sweep and dust your room. The facility cannot require you to cut the grass or sweep the hallways.

If you agree to do work for the facility, the facility must pay you a fair amount for your services.

Your right to be informed about your treatment

You or your guardian are entitled to be informed about the medical treatment that you will receive. The medical staff should tell you about the potential risks involved with any proposed form of treatment. That way you can make an informed decision about whether you wish to receive the treatment. The doctor must notify you in writing about the serious side-effects of any medicine.

Your right to refuse treatment and services

As an adult, you can usually refuse medical treatment, MH treatment, or DD habilitation services. If you have a legal guardian, your guardian cannot give consent on your behalf if you object to the treatment. The guardian can refuse these services on your behalf if this is within the scope of the guardianship order.

Example: You have the right to refuse to take medications. You can refuse to participate in therapy or other forms of treatment.

However, in some situations, you may be forced to receive unwanted treatment. The process by which a facility can force treatment is explained in detail below.

If you refuse a form of treatment or services, the facility must inform you of any alternative forms of treatment that may be available. The information msut cover the risks involved in the alternative treatment. The facility also must inform you of the potential consequences of refusing treatment.

Involuntary treatment: Emergency treatment without your consent

If you or your guardian refuse treatment, the facility may be able to force treatment anyway. The facility can only do this if it is necessary to prevent an immediate risk of harm.

If you are forced to receive emergency treatment against your wishes, the facility must follow certain rules. You should not receive involuntary treatment for more than three days, not counting Saturdays, Sundays, and holidays. The facility must document in your records the reasons why you are being given involuntary treatment. If you receive involuntary treatment for more than 24 hours, you must be personally examined each day. The facility also must document in your records the reasons why you continue to need the treatment.

If the facility wants to give involuntary treatment for more than three days, the facility must file a petition asking the court for permission. The court must hold a hearing within 14 days. The facility can continue the treatment while waiting for the hearing, but they must follow certain rules. They must continue to examine you daily and document the reasons for the treatment. The rules concerning the court hearing procedure are explained below.

Example: You decide on Thursday that you want to stop taking your medicine because it makes you feel sick. Your doctor believes that stopping the medicine suddenly will cause serious medical harm. The facility may force you to continue to take medicine on Thursday, Friday, Saturday, Sunday, and Monday. The facility cannot force you to take medicine on Tuesday unless they have filed a court petition asking the judge to order you to take medicine. If the facility has filed a petition, they can force you to keep taking medicine until the hearing.

Non-emergency involuntary administration of psychotropic medication and electroconvulsive therapy

A facility must follow special procedures before it can administer psychotropic medications or electroconvulsive therapy without your consent. If you refuse to receive these types of treatment but your doctor believes they are necessary for your mental health, the facility may file a court petition. The petition asks a judge for permission to force you to receive the treatment.

If you refuse to receive this type of treatment, a legal guardian cannot give consent for you. Instead, your guardian must file a court petition seeking court approval for the treatment.

If you do not have the mental ability to give informed consent to receive psychotropic medications or electroconvulsive therapy, then the facility must file a court petition before giving the treatment. However, if you do not object to receiving the treatment, your legal guardian can consent to it for you.

"Informed consent" means that the facility must disclose all potential risks, and you get the chance to make the final decision.

What are the steps in a hearing?

The petition

Any adult, including your guardian, may file the court petition. If you have signed a Health Care Power of Attorney or a Mental Health Preferences Declaration, you must attach a copy to the petition. A copy of the petition must be delivered to you at least 3 days before the hearing. If you have a guardian, a lawyer, or a Power of Attorney agent, they must receive a copy as well.

Time and place of the hearing

If you live in an MH or DD facility, the hearing will be held at that facility if this is practical. However, anyone can ask that the hearing be held somewhere else. If your home is in a different county, you can ask that the hearing be held in your home county.

The court hearing may be held within 7 days after the petition is filed. The hearing will be postponed an additional 7 days if a party requests it. It will be postponed up to 7 more days if a party requests it and the judge finds that more preparation time is needed. The hearing can be postponed further only if the court determines that this time is needed to:

• Perform an examination,
• Schedule a jury trial, or
• Appoint a different lawyer to represent you.

Representation at the hearing

You are entitled to be represented by a lawyer at the hearing. If you cannot afford a lawyer, or you cannot find one, the judge must appoint a lawyer to represent you. If you are unable to afford a lawyer, the judge will appoint one from an advocacy group such as Equip for Equality, or the Guardianship and Advocacy Commission. If such a lawyer is not available, the judge may appoint one from the county Public Defender. If no public defenders are available, the judge may appoint a private attorney. You can request to postpone the hearing to give your appointed lawyer time to prepare.

The judge will not allow you to represent yourself at the hearing unless you have first consulted with a lawyer. Even then, the judge will only allow it if the judge decides that you can make an informed decision about how to handle the case.

Independent psychiatric evaluation

Before the hearing, you are entitled to be examined by a medical expert of your choice. The medical expert can then submit a report to the court. The report should give his opinion about whether you should receive the proposed services or treatment. The state may pay for this if you are low-income. 

Hearing procedures

You must attend the hearing unless your lawyer waives this right and the judge decides that attending the hearing could cause you serious harm. If you refuse to attend the hearing, the hearing will be held without you.

You can choose to have the case decided by a 6 person jury or by a judge. A transcript must be made of everything said at the hearing.

For the judge or jury to decide that you must receive treatment or services against your wishes, the facility must prove that:

• You have a serious mental illness or developmental disability,
• You have suffered a loss in the ability to function, are suffering, or have exhibited threatening or disruptive behavior and these are longstanding or repeated problems,
• You are unable to make a rational decision about whether you should receive the treatment,
• The benefits of the treatment outweigh the harm caused by the treatment, and
• This is the less drastic treatment.

The facility must prove these factors through clear and convincing evidence. If the judge or jury decides that all of these factors are met, then the court will enter a written court order. The court order authorizes the facility to administer the treatment against your will. The order must name the people who can administer the treatment. If the order requires you to take medications, the order must specify the names and dosages.

You or your lawyer must get a copy of the court order. The judge must notify you orally and in writing of your right to appeal the court order.

Special rules concerning electroconvulsive treatment for children

A child's parents cannot authorize the administration of electroconvulsive therapy on their child. Only a court may authorize such treatment. The court must hold a hearing following the steps described above. Also, the child must be examined by two psychiatrists. Both psychiatrists must agree that the child should receive the treatment.

How long involuntary treatment can continue

The court order can authorize the facility to administer the involuntary treatment for up to 90 days. If the facility believes that you need treatment beyond 90 days, they must file a new court petition. You will then get another court hearing, and the judge can authorize the treatment for up to 90 additional days. After the second 90 day period, the facility must file a new court petition if they think that you sitll need treatment. Again, you will get another court hearing, and the judge can authorize the treatment for up to 180 days. This procedure may be repeated as long as the facility believes that you need the treatment.

If the facility files the new petition at least 15 days before the prior court order expires, and you consent to postponing the hearing, you will continue to receive the involuntary treatment until the next court hearing.

Review of long-term involuntary mental health treatment

If you live in a mental health facility and receive involuntary treatment for over 3 months, the facility must hold a hearing to review the treatment. This is an informal hearing and must be held every 6 months.

The hearing is to review your condition and decide whether you continue to need the treatment. You must receive notice at least 7 days before the hearing. You can choose to be represented by a lawyer or advocate at the hearing. If you do not consent to treatment, the facility must obtain a court order to continue, as explained above.

Involuntary treatment 

You can give someone else legal authority to make decisions about your healtchare.A Power of Attorney for Health Care and a Mental Health Treatment Preference Declaration are two ways to do this. The person you appoint is called your "agent" or your "attorney-in-fact."

If you have appointed an agent under either one of these documents, that person can consent to treatment for you. They can do this even if you say you don't want the treatment. However, they can only consent if they are authorized by the terms of the Power of Attorney or Mental Health Treatment Preference Declaration.

You may be able to revoke the Power of Attorney for Health Care. This will remove your agent's legal authority to grant consent for treatment that you do not wish to receive. You can only revoke a Mental Health Treatment Preference Declaration in a few situations. 

Unusual or hazardous forms of treatment and psycho-surgery

Special rules apply to certain forms of treatments that are:

• Unusually invasive,
• Have a high risk of serious side effects, or
• Are experimental.

If you are over age 18 and are independent, you must give informed consent before the facility can give such treatment. If you are under 18 or have a legal guardian, the facility needs a court order to give this type of treatment. This is true even if your parent or legal guardian wants you to have the treatment.

Use of restraints

A facility can use "restraints" and "seclusion" only to prevent you from harming yourself or others. Restraints and seclusion can never to be used as punishment or to make things easier for the staff.

The term "restraint" means a restriction on your ability to move some part of your body. This includes:

• Straps which hold you down,
• Jackets, mitts, or other items designed to prevent you from using your arms, hands, or fingers, or
• Being held down by someone or having your arms pinned behind you.

It is not considered a restraint if the facility staff uses brief physical force to prevent you from harm. However, staff should only do this in emergencies. The facility must develop other strategies to use for behavior instead of physical force.

What is seclusion?
The term "seclusion" means to be placed alone in a room without a way to leave.

It is usually not considered seclusion to require you to stay in one portion of a larger room. This must only be for a reasonable amount of time. It also must be related to your care.

A facility must follow rules if they use seclusion or restraints on you.

• Restraints may only be used by staff members who are trained on how to safely and properly use them.
• The restraint must be no more confining than is necessary.
• The staff must check on you at least every 15 minutes while you are restrained or secluded.
• You must be freed from the restraints to eat and use the toilet unless this would cause harm to you or others.
• If you are secluded, the room must be adequately lighted, heated, and furnished.
• If you are secluded in a locked room, someone with a key must be nearby at all times.

Before a restraint or seclusion is used, one of the mental health professionals who has personally observed you must make a written order in your treatment record. The written order must state in detail why a restraint or seclusion is being used. The order can remain in effect for no more than 16 hours. The professional must write a new order for each additional 16 hour period that you are restrained or secluded.

The staff member who authorized the restraint must notify the facility director within 24 hours. Once you have been restrained during all or part of 24 hours, you may not be restrained during the next 48 hours without the specific written permission of the facility director. Once you have been secluded during all or part of 16 hours, you may not be secluded during the next 48 hours without written permission from the director.

In the event of an emergency requiring the immediate use of a restraint or seclusion to prevent you from harming yourself or others, a facility can act without first obtaining a written order. However, the restraint or seclusion cannot exceed 2 hours without a written order from a medical expert. You have the right to notify someone whenever restraint or seclusion is used. The facility must advise you of this right whenever they use these methods.

Example: You may demand that the facility notify the Guardianship and Advocacy Commission, or Equip for Equality, or your guardian.

The Guardianship and Advocacy Commission must contact you if they are notified. They can decide whether they need to take action to protect you from improper restraints or seclusion.

How to protect and [no-lexicon]enforce[/no-lexicon] your rights

Filing a complaint in circuit court

Any time that you believe that your rights are violated by a mental health or developmental disabilities facility, you can file a complaint in Illinois Circuit Court. Someone acting on your behalf can also do this In your complaint, you can ask the court to order the facility to stop whatever they are doing.

Example: If you are improperly restrained, you can ask the judge to order that the restraints be stopped.

You also can file a complaint if the facility is not providing you with legally required services.

Example: Facilities are required to provide you with safe and adequate food, shelter, medical attention, and treatment. You can file a court complaint and ask a judge to order the facility to provide these services if they fail to do so.

In extreme cases, you also can ask the judge to award you money to compensate you for improper actions by the facility.

Representation in court proceedings

You are entitled to be represented by your lawyer in court cases. Also, Equip for Equality, and the Guardianship and Advocacy Commission are two agencies that advocate for the rights of recipients of mental health and developmental disability treatment and services. Both of these organizations may be able to provide you with a lawyer to represent you in legal proceedings. 

Filing a complaint with the U.S. Attorney General

The Civil Rights of Institutionalized Persons Act (CRIPA) is a federal law which authorizes the U.S. Attorney General to investigate and take legal action if your constitutional rights are being violated by a government-operated facility. The Attorney General becomes involved only if there is evidence that the institution has engaged in repeated and severe violations of residents' rights. The Attorney General will not investigate isolated incidents or represent individuals. The facility is prohibited from retaliating against you for filing a complaint under this law.

For more information or to make a complaint to the U.S. Attorney General, contact:

U.S. Department of Justice
Civil Rights Division
950 Pennsylvania Avenue, NW
Special Litigation Section - PHB
Washington, D.C. 20530
(202) 514-6255 (voice/TTY)
U.S. Department of Justice - Civil Rights Division
Also, see:
Civil Rights of Institutionalized Persons Act

Required notices

When you begin treatment or services, the facility must give you a written notice which informs you of your rights.

Once you become a resident of a facility, it may be difficult for you to stand up for your rights. This is why the MHDD Code requires that other people be notified whenever certain things occur. This way other people can take action to protect your rights. You can ask that the notice is given to:

• Your spouse,
• Other family or friends,
• Your lawyer, or
• An advocacy organization such as Equip for Equality or the Guardianship and Advocacy Commission.

The facility must attempt to notify at least two of the people or organizations that you designate. The facility can notify them by mail or by phone. The facility must do so within 24 hours of the event requiring notice.

Notice to others must be provided at the following times:

• Upon admission to the facility;
• Whenever restraints or seclusion are imposed on you, and
• Any time the facility takes an action that limits your rights under the MHDD Code.

Statutes and regulations

The portion of the Mental Health and Developmental Disability Code which lists your rights: 405 ILCS 5/2.

Regulation of the Illinois Department of Human Services which enumerates your rights: 59 Ill. Admin. Code 125.20. 

Regulations concerning obtaining informed consent in connection with medical and dental care: 59 Ill. Admin. Code 112.30. 

Regulations concerning the administration of psychotropic drugs: 59 Ill. Admin. Code 112.80.