Disabilities Guidebook: Rights of Recipients of Mental Health and Developmental Disability Services

Disabilities Guidebook: Rights of Recipients of Mental Health and Developmental Disability Services

Last updated: August 2010

(Chapter 11 Section 3 from Guidebook of Laws and Programs for People with Disabilities)

 

The Mental Health and Developmental Disabilities Code: Chapter II

What Is It? An Illinois law which establishes the rights of persons who are recipients of services from mental health facilities and developmental disability facilities.

What Is Its Purpose? To make sure that people who are receiving mental health treatment or developmental disability habilitation services are treated in a humane manner, free from abuse and neglect, with the greatest possible degree of freedom of individual choice.

Who Can Benefit? Illinois recipients of mental health and developmental disability treatment and services.

I. Your Legal Rights

Your Personal Freedom and Property Rights

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

As used here, 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.

As used here, the term "developmental disability habilitation services" means services provided by a facility which provides residential care or which provides other services 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 summarizes your rights under the Mental Health and Developmental Disabilities Code (MHDD Code). These rights apply regardless of whether your care and treatment is received 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 basic principle established by the MHDD Code is that, in general, you do not lose any of your legal rights simply because you are a recipient of mental health (MH) treatment or developmental disability (DD) habilitation services. Your rights as a citizen are guaranteed by the U.S. Constitution and the Illinois Constitution. The MHDD Code provides that those rights can be limited only to the extent necessary to prevent serious harm to yourself or others.
Example: You retain your right to vote, your right to freedom of religion, and your right to free speech.

No Presumption of Legal Disability
A person is deemed "legally disabled" if a court finds, pursuant to a guardianship petition, that the person is not able to safely manage his affairs. Being found to be legally "disabled" has serious consequences and can result in the loss of many legal rights. The MHDD Code provides that no one is considered to be legally "disabled" solely because they are a recipient of mental health or developmental disability services.

Only a court in a guardianship proceeding can find you to be 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 are a recipient of MH treatment or DD habilitation services, you are entitled to receive the level of care that is necessary to adequately meet 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 are entitled to be free from abuse or neglect while you are receiving care.

If you receive residential care, the facility must establish an individual services plan in order to make sure that you are receiving appropriate care.

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 and update the individual services plan on a regular basis to make sure that it continues to meet your needs.

Communicating With Others
If you live in a mental health or developmental disability facility, you retain your right to freely communicate with other people. This means that you can communicate with other people in private, without interference by the staff at the facility. This right includes communications by mail, telephone, and personal visits.

In order to make sure that you can exercise this right, the facility must provide you with reasonable access to telephones. It must provide you with a place where you can privately meet with visitors. It must provide you with access to send and receive mail.

In addition, the facility must provide you with a reasonable amount of writing materials and stamps, or funds to use the phone, if you are unable to afford this with your own money.

You have the right to communicate freely with government officials. If you write any letters to the Governor, members of the General Assembly, Attorney General, judges, state's attorneys, officers of the Department, or lawyers, the facility must promptly send them to the persons to whom they are addressed. The facility staff is not allowed to read or inspect these letters. If you get any letters in reply from the officials or attorneys, the facility staff must deliver them to you without first reading them.

If you have an attorney, or if you or your family have asked a lawyer to visit with you, the facility must permit the lawyer to enter the facility to enter and meet with you at any time during normal business hours.

However, there are some limits upon your right to communicate with others. The facility director can impose limits on your communication with others, but only to the extent that these restrictions are reasonably necessary to protect you or others from harm, harassment or intimidation. The facility must notify you in advance about these restrictions. If you so request, the facility also must inform the people with whom you are communicating about the restrictions.
Example: The facility may impose a rule that packages mailed to residents of the facility will be x-rayed to make sure that they do not contain firearms.

Your Personal Property
If you live in a mental health or developmental disability facility, you are entitled to have and use your own personal property. The facility must give you a reasonable amount of storage space where you can keep your belongings. When you are discharged from the institution, all of your personal property must be returned to you.

The facility has the right to make rules prohibiting you from having or using items of property that could cause harm to you or others. The facility must give you advance notice about the items that are not permitted in the facility.
Example: The facility can have a rule prohibiting 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 the return of all of your money when you are discharged from the facility.

Some benefit programs, such as Social Security, may require people with disabilities to appoint a payee to receive and control the benefit payments. If you are required to have a payee, the facility and its employees cannot be your payee, unless you or your guardian 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, the guardian can control your money if the court order so directs.

Working for the Facility
The facility cannot force you to perform work for the facility, except that you may be required to perform your own housekeeping chores.
Example: The facility can have rules requiring you to sweep and dust your room, but the facility cannot require you to cut the grass or sweep the hallways.

If you agree to perform work for the facility, you are entitled to be paid a fair amount for your services, in accordance with federal and state wage laws.

Your Rights Concerning Your Care and Treatment

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 doctor or other medical staff should tell you about the potential risks involved with any proposed form of treatment, so that you can make an informed decision about whether you wish to receive the treatment. The doctor must notify you in writing about the possible serious side-effects of any medicine used to treat or control a mental condition.

Your Right to Refuse Treatment and Services
In general, if you are an adult you have the right to refuse medical treatment, mental health treatment, or developmental disability habilitation services. If you have a legal guardian, your guardian cannot grant consent on your behalf if you object to the treatment. The guardian has the right to 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 and you have the right to refuse to participate in therapy or other forms of treatment.

However, under some circumstances you may be forced to receive unwanted treatment. The process by which a facility can administer involuntary 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, and of the risks involved in the alternative treatment. The facility also must inform you of the potential consequences of your refusal of treatment.

Involuntary Treatment

Emergency Treatment Without Your Consent
If you or your guardian refuse a type of medication or treatment, the facility can force you to receive the treatment against your wishes, but only if this is necessary to prevent an immediate risk that you will cause serious harm to yourself or others.

There are rules the facility must follow if you are forced to receive emergency treatment against your wishes. 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 and the facility must document in your records the reasons why you continue to need the treatment.

If the facility believes that you need to receive treatment against your wishes for more than three days, the facility must file a court petition asking a judge to authorize continued involuntary treatment. The court hearing must be held within 14 days. The facility can continue to administer the involuntary treatment while waiting for the hearing, but 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 medicines because they make 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 the medicine on Thursday, Friday, Saturday, Sunday, and Monday. The facility cannot force you to take the medicine on Tuesday unless they have filed a court petition asking the judge to order you to take the medicine. If the petition has been filed by that time, you can be forced to continue taking the medicine while waiting for the court hearing.

Non-Emergency Involuntary Administration of Psychotropic Medication and Electroconvulsive Therapy
There are special procedures which a facility must follow before it can administer psychotropic medications or electroconvulsive therapy against your wishes or if you are unable to give consent. If you refuse to receive these types of treatment and your doctor believes that this causes a serious risk to your mental health, the facility may file a court petition asking a judge to give them permission to force you to receive the treatment.

If you have a legal guardian and you refuse to consent to receive this type of treatment, your guardian cannot grant 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 asking a judge to give them permission to give you the treatment. However, if you have a legal guardian and you do not object to receiving the treatment, your guardian can consent to the treatment on your behalf.

The term "informed consent" means that the facility must fully inform you of all of the risks involved with the treatment, and you must be given the right to make the final decision whether to receive the treatment.

The Hearing Process

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, a copy must be attached to the court 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 an agent pursuant to a Power of Attorney, a copy of the petition must be sent to them as well.

Time and Place of the Hearing.
If you live in a MH or DD facility, the hearing will be held at that facility if this is practical. However, you or any other party are entitled to ask that the hearing be held somewhere else. If your home is in a different county than the facility, 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 upon the request of any party, and up to 7 more days at the request of any party if the judge finds that more time is needed to prepare. The hearing can be postponed further only if the court determines that this is necessary to provide time 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 this hearing. If you cannot afford a lawyer, or if you are unable to find a lawyer by the time of the hearing, the judge must appoint a lawyer to represent you. If you are unable to afford a lawyer, the judge will appoint a lawyer who is employed an advocacy group such as Equip for Equality, or the Guardianship and Advocacy Commission if such a lawyer is available. If not, the judge may appoint a lawyer from the county Public Defender. If no public defenders are available, the judge may appoint a private attorney. The hearing may be postponed at your request in order 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 allow you to proceed without a lawyer only if the judge decides that you are able to make an informed decision about how to handle the case.

Independent Psychiatric Evaluation.
Before the hearing, you are entitled to be examined by a psychiatrist or some other medical expert of your choice. This person then can submit a report to the court giving his opinion about whether you should receive the proposed services or treatment. The state may pay for this if you are poor.

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

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

In order for the judge or jury to decide that you must receive treatment or services against your wishes, the facility must prove all of the following factors by clear and convincing evidence:

•That you have a serious mental illness or developmental disability;
•That you have suffered a loss in the ability to function, or you are suffering, or you have exhibited threatening or disruptive behavior; and these are longstanding or repeated problems;
•That the benefits to you of the treatment outweigh the harm caused by the treatment;
•That you are unable to make a rational decision about whether you should receive the treatment;
•That there are no less restrictive alternatives to the treatment.

If the judge or jury decides that all of these factors are met, then the court will enter a written court order which 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 medicines authorized and the range of dosage permitted.

A copy of the court order must be given to you or your lawyer. 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 on their own authorize the administration of electroconvulsive therapy on their child. Only a court may authorize such treatment following a hearing in accordance with the steps described above. In addition, the court cannot allow such treatment unless the child has been examined by two psychiatrists, and both of them are in agreement that the child should receive electroconvulsive 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 further treatment after the initial 90 days, they must file a new court petition. You will be entitled to another court hearing under the procedures explained above, and the judge can authorize the facility to administer the involuntary treatment for up to 90 additional days. If the facility believes that you need further treatment after the second 90 day period, they must file a new court petition. Again, you will be entitled to another court hearing under the procedures explained above, and the judge can authorize the facility to administer the involuntary treatment for up to 180 days. This procedure may be repeated as many times as the facility believes that you continue to need the involuntary treatment.

If the facility files the new petition at least 15 days before the prior court order expires, and you ask for or agree to a postponement of the hearing, you will continue to receive the involuntary treatment while waiting for the next court hearing.

Review of Long-term Involuntary Mental Health Treatment
If you live in a mental health facility and you have been receiving medication or any other form of treatment against your wishes for a period of 3 months, and you continue to receive the treatment thereafter, the facility must hold an informal hearing to review the involuntary treatment. This hearing must be held every 6 months.

The purpose of the hearing is to allow you and the mental health professionals to review your condition and to decide whether you continue to need the treatment. You are entitled to receive notice at least 7 days before the hearing, and you can be represented by a lawyer or other advocate if you so desire. Unless you give your consent to the treatment, the facility must obtain a court order to continue the treatment, as explained above.

Involuntary Treatment Pursuant to a Power of Attorney or Mental Health Treatment Preference Declaration
A Power of Attorney for Health Care and a Mental Health Treatment Preference Declaration are two types of legal documents in which you may give someone else the legal authority to make decisions about what type of health care you will receive. The person you appoint is called your "agent" or your "attorney-in-fact."

If you have appointed an agent pursuant to either one of these documents and you are now unable to make an informed decision about your health care, the agent or attorney-in-fact can give consent to treatment on your behalf, even if you say you don't want the treatment. However, they may give permission for treatment only if this 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 and thereby remove your agent's legal authority to grant consent for treatment that you do not wish to receive. The circumstances under which you can revoke a Mental Health Treatment Preference Declaration are strictly limited. For more information, see the sections of this Guidebook titled "Advance Directives: Powers of Attorney and Living Wills" and "Advance Directives for Mental Health Treatment," in Chapter 8, Guardians and Representatives.

Unusual or Hazardous Forms of Treatment and Psycho-surgery
There are special rules which apply to certain forms of treatments which are unusually invasive, have a high risk of serious side effects, or are experimental.

If you are over age 18 and you do not have a legal guardian, the facility must obtain your informed consent before it can administer such treatment. If you are under age 18, or if you have a legal guardian, then this type of treatment can be administered only upon a court order. This is true even if your parent or legal guardian wants you to have the treatment.

Use of Restraints and Seclusion

A facility can use "restraints" and "seclusion" only to prevent you from harming yourself or others. Restraints and seclusion are never to be used as a form of punishment, and they are not to be used simply because this would be 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;
  • 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 harming yourself or someone else. However, this is to be done only in emergencies, and the facility must develop other strategies to deal with your behaviors so that the frequent use of physical force is not needed.

The term "seclusion" means to be placed alone in a room from which you have no means of leaving.

It is not considered to be a seclusion if you are required to stay in one portion of a larger room, provided that this is not done for more than 2 hours at a time or 4 hours in a day, and is being done for some legitimate reason related to your care.

There are rules a facility must follow if they use seclusion or restraints on you.
•A restraint may be imposed only by a staff person who has received training on how to safely and properly use the restraint.
•The restraint must be no more confining than is absolutely necessary.
•The staff must personally check on you at least every 15 minutes while you are restrained or secluded.
•You are entitled to be freed from the restraints in order 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 imposed, 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 make a new written order, which complies with the above-requirements, for each additional 16 hour period that the restraint or seclusion is to be used.


The staff member who authorized the restraint must notify the facility director about the restraint within 24 hours. Once you have been restrained during all or part of a 24 hour period, or secluded during all or part of a 16 hour period, you may not be restrained or secluded at any time during the next 48 hours without the specific written permission of the facility 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 impose a restraint or seclusion without first obtaining a written order. However, the restraint or seclusion cannot exceed 2 hours unless the facility obtains a written order from a doctor or psychologist. Whenever a restraint or seclusion is imposed, the facility must advise you of your right to have any person you choose notified about the restraint or seclusion, so that the person may take action to help you.
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 is required by law to contact you if they are notified of a restraint or seclusion, so that they can decide whether they need to take action to protect you from improper restraints or seclusion.

II. How to Protect and Enforce Your Rights

Filing a Complaint in Circuit Court
Any time that you believe that your rights are being violated by a mental health or developmental disabilities facility, you (or someone acting on your behalf) have the right to file a complaint in Illinois Circuit Court. In your complaint, you can ask the court to order the facility to stop whatever they are doing.
Example: If you are being 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: If you are a resident of a facility, the facility is required to provide you with safe and adequate food, shelter, medical attention, and treatment. You have the right to 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 own lawyer in court cases. In addition, 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 the services of a lawyer to represent you in legal proceedings to protect your rights. See the section of this guidebook titled "Legal Advocacy for People with Disabilities", in Chapter 16, Miscellaneous Rights.

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 will become involved only if there is evidence that the institution has engaged in repeated and serious violations of resident's rights. The Attorney General will not investigate isolated incidents or represent individuals. The facility is prohibited from retaliating against you in any way 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
In order to make sure that you are aware of your rights, at the time you begin to receive 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 personally take steps to protect your rights. Therefore, the MHDD Code requires that you be allowed to have other people notified whenever certain things occur, so that they can take action to protect your rights. You can ask that the notice be 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, and 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.
  • Any time the facility takes an action which results in limiting any of your other rights that are guaranteed by the MHDD Code.

III. Where to Go for More Information

Statutes and Regulations
The portion of the Mental Health and Developmental Disability Code which lists your rights is found at 405 ILCS 5/2.

The regulation of the Illinois Department of Human Services which enumerates your rights is found at 59 Ill. Admin. Code 125.20. Regulations concerning obtaining informed consent in connection with medical and dental care are found at 59 Ill. Admin. Code 112.30. Regulations concerning the administration of psychotropic drugs are found at 59 Ill. Admin. Code 112.80.

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