Disabilities Guidebook: Rights to Confidentiality for People with Mental and Developmental Disabilities

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Author: David Wolowitz & Michael O'Connor, Prairie State Legal Services
Last updated: August 2010

(Chapter 4 Section 1 from Guidebook of Laws and Programs for People with Disabilities)


The Mental Health and Developmental Disabilities Confidentiality Act

What Is It? An Illinois law that is designed to protect the privacy of information relating to mental health care and developmental disabilities services.

What Is Its Purpose? To prevent the disclosure of mental health care and developmental disabilities services records without consent.

Who Can Benefit? All recipients of mental health or developmental disabilities services.

I. Your Legal Rights

Obtaining Your Own Records and Consenting to their Disclosure

In General
The Mental Health and Developmental Disabilities Confidentiality Act (Act) is an Illinois law which is designed to prevent the disclosure of records relating to mental health and developmental disabilities services. The Act also gives you the right to seek the correction of records that you believe are inaccurate.

Information Protected by the Act
The Act applies to "records of mental health or developmental disability services" that are that are kept by a "therapist" or by an agency providing such services.


The term "records involving mental health or developmental disabilities services" include all documents about you and the services provided to you. This includes documents relating t

  • Physical or mental examinations;
  • Diagnosis;
  • Treatment or training;
  • Evaluations;
  • Medications;
  • Aftercare;
  • Habilitation and rehabilitation.
  • These documents can include notes about services provided, letters, and other documents found in your file.

The term "therapist" is very broad and includes: psychiatrist, doctor, psychologist, social worker, nurse, mental health therapist, mental health counselor, or other person who provides services of this type. The term does not include pharmacists. All records of mental health or developmental disabilities services are confidential, and cannot be disclosed except as permitted by the Act. The Act applies to any such records kept anywhere, including at a mental health agency, a school, a private doctor's office, a hospital, or a nursing home.

The Act is intended to protect not only written records, but also all information you give to your therapist in the course of receiving services. It also protects all communications which you or any other person make while you receive mental health or developmental disability services.

As discussed below, there are many exceptions where disclosure of records or communications are allowed.

Who Has the Right to Obtain Records Protected by the Act?
You have the right to inspect and copy your own records if you are age 12 or older. In addition, the following people have the right to inspect and copy protected records, upon request:

  • The parent or guardian of a recipient of services who is under age 12;
  • The guardian of a recipient of services who is age 18 or over;
  • An attorney or guardian ad litem representing a minor 12 years or older, with a court order;
  • An agent appointed by the recipient under a Power of Attorney for Health Care or Property; or
  • An attorney-in-fact named in a declaration of preferences or instructions regarding mental health treatment under the Mental Health Treatment Preference Declaration Act.

Disclosure of Records to Parents of Children Age 12 to 18
A parent or legal guardian of a recipient of services who is over 12 but under age 18 may always have access to certain kinds of records. Those are records about the child's current condition, diagnosis, treatment and medications being provided, and treatment and services needed.

The parent or guardian may have access to other kinds of mental health or developmental disabilities service records if the child does not object or if the therapist does not feel that there are strong reasons to deny you access to the records. If the therapist or child denies access to those records, the parent or guardian may file a court action to seek access.

Disclosure Upon Written Consent
Unless an exception applies, any person who does not fall within one of the above categories may obtain access to records only by getting written consent. The consent must be made by the person who is the subject of the records, or their parent, guardian, Power of Attorney agent, or attorney-in-fact named in a mental health treatment declaration.

Examples: If a person wants to get records of an adult who has a legal guardian, that person must obtain the written consent of the legal guardian. If a person wants to get the records of a child under age 12, the person must obtain the written consent of a parent or guardian.

Anyone seeking parental consent for disclosure of a therapist's records and communications only has to get the consent of one parent.

A general release of medical records is not sufficient to release your mental health and developmental disability service records. The written consent form must contain the following information:

  • The name of the person or agency who is being given permission to obtain the record;
  • The reason that the record is being disclosed;
  • The kind of records to be disclosed; and
  • The date when the consent ends.
    Also, the consent form must be signed and witnessed.

Example: A consent form might say the following: "I, Jane Doe, give my consent to Dr. John Smith, to release my mental health and treatment records to Judy Johnson for the purpose of my SSI application. This consent is good for one year. Signed, Jane Doe. Witnessed, Sam Roe. Date: 5/8/00.

The consent form also must include a statement telling the person giving consent of their right to revoke the consent at any time, and of the consequences of refusal to grant consent.

The therapist or other person holding the records can release them if he or she receives a proper, written consent form. However, the therapist or other person holding the records should release only those records that relate to the reason for disclosure which was specified in the consent form.

Redisclosure of Records
Unless an exception applies, any person who obtains protected records may not share the records or reveal their contents to any other person, unless they get a court order or the written consent of the person who initially consented to the disclosure.

Example: You have signed a consent authorizing your doctor to give a copy of your treatment records to the residential treatment program in which you are participating. The residential treatment program cannot give anyone else access to your records without first obtaining your written consent or a court order.

Revocation of Consent
You may revoke the consent at any time. The revocation must be done in writing. You must sign it. Someone must witness it. Any therapist or other person having your records must not disclose your records once they learn that you have revoked the consent.

Records May Be Disclosed Without Consent

Exceptions Under Which Records May be Disclosed Without Consent
In some situations, people can review or obtain copies of your treatment records without your consent or the consent of anyone else. Those situations are as follows:

Needed to receive benefits. Your records may be disclosed without consent if the records are needed to enable you to get benefits. This is true only if you are not capable of granting consent or you are not available to do so. Without consent, the information disclosed may include only:

  • your identity and your therapist's identity;
  • a description of the nature, purpose, quantity, and date of the services you had;
  • other information, but only if necessary to determine the benefits you should receive.

Co-workers and supervisors. A therapist may reveal the contents of your records to co-workers or other therapists that are assisting him or her, when disclosure is needed to provide proper care. Also, to the extent necessary, a therapist may reveal a patient's records to his supervisors or to others who are supervising the therapist's work, or to the therapist's attorney. This kind of disclosure is permitted only after you are informed that this disclosure may be made.

Coordination of services. State agencies or departments (such as Human Services, Public Aid, Public Health and the State Board of Education) may disclose information to each other about you if you have received mental health or developmental disabilities services from any of these agencies. This is so that the services provided by the agencies can be coordinated. However, the disclosure can only generally describe the services you received or will receive. Clinical and treatment records should not be disclosed without your consent.

Protection from harm. A therapist may disclose records when he or she believes that doing so is immediately necessary to protect you from serious harm, or to prevent you from causing immediate and serious harm to others. In certain circumstances, disclosures may be made to the police, the State's Attorney's Office, and the Attorney General's Office. Disclosure also is permitted to warn and protect a specific individual against whom you have threatened violence.

Disclosure in Legal Proceedings. An attorney or legal guardian who represents a minor between the age of 12 and 18 in any court proceeding or administrative proceeding may have access to protected records by obtaining the approval of the judge or hearing officer.

Under some circumstances, protected records of an adult or a child may be disclosed without consent to the opposing party in a legal proceeding. However, these circumstances are strictly limited. Generally, your records may be disclosed to the opposing party only if your mental condition or the service you have received is part of your legal claim or defense.

In addition, before the records can be disclosed, the judge or hearing officer must privately review the records. The judge will permit the records to be disclosed only if the need for the records in the legal proceeding outweighs the need to protect your privacy.

In most cases, no one is allowed to serve a subpoena to get access to records or communications unless the subpoena is served along with a copy of a court order authorizing the disclosure of the records.

In court cases to appoint a legal guardian, records may be disclosed without consent for the purpose of allowing the judge to determine whether a person is in need of a guardian.

In court cases to involuntarily admit a person to a facility for the purpose of mental health care or to require a person to take psychotropic medications, the therapist may disclose the records to the States Attorney and to the attorney representing the person who received the mental health services.

Records must be disclosed to the guardian ad litem in a case where a petition has been filed under the Juvenile Court Act for wardship of a minor or to find a minor abused, neglected or dependent, and the recipient is a parent, guardian or legal custodian of the minor.

When a court orders a mental health examination of a party, the records and communications made in the course of the examination may be disclosed. However, the court must find that the recipient was properly informed before submitting to such examination that the records would not be considered confidential or privileged.

Records That May Not be Released
Notes. The law considers a therapist's personal notes regarding your services to be the personal property of the therapist. They are not part of your record, and the therapist cannot be compelled to disclose those notes to anyone, even in a court proceeding.

Personal notes means:
•Information disclosed to the therapist on condition that it would never be disclosed to the recipient;
•Information that would be harmful to the recipient's relationships with others;
•The therapist's speculations, hunches, impressions and reminders.

Test materials. The therapist cannot release psychological test materials if the disclosure would compromise the testing process.

Example: For certain types of psychological tests to be valid, the person being tested must not have previous knowledge of the questions or other contents of the test.

Any person who has taken a psychological test is entitled to have all of the testing records disclosed to another psychologist.


Reviewing or Disputing the Records

Assistance in Reviewing Your Own Records
If you are under age 18 and are inspecting your own records, you can get help in interpreting the records. You cannot be charged a fee for this assistance.
Example: If the records contain complicated medical terms or test results, you may receive help to understand the terms or the meaning of the test results.

You cannot be denied access to your own records just because you decide that you do not want assistance in interpreting them.

Fees for Copying Records
Your doctor or therapist can charge a reasonable fee to copy his or her records. But if you are poor and you are requesting your own records, you are entitled to obtain copies for free, if you make a request in writing.

Example: Here is a sample letter to a doctor to waive his fee for copying a mental health record: "Dear Doctor, I am requesting a copy of my records. My only income is SSI and I cannot pay your copying fee. Please waive your fee so I can have a copy of my records."

Disputing the Contents of Records
If you believe that the information contained in any record protected under the Act is incorrect, you can ask the therapist to correct the wrong or misleading parts of the record. If the therapist refuses to do so, you can file a complaint in state court seeking a court order requiring that the record be corrected.

In addition, you can submit a written statement to the therapist which explains why you believe the information in the record is wrong or misleading. Your written statement itself becomes part of your record. Whenever the disputed part of your record is disclosed to anyone, the therapist also must provide a copy of your written statement.


II. How to Know if Your Rights Have Been Violated

Your rights under the Mental Health and Developmental Disabilities Confidentiality Act have been violated if

•You are over age 12 and you are denied access to review and copy your own treatment records.

•Your records are disclosed to someone without written consent, unless one of the exceptions applies.

•You give written consent for the disclosure of your records, but the therapist discloses more information than is allowed under the terms of the written consent.

•A therapist discloses your records after having been notified that you have revoked consent.

•A person who has received your records with your consent then discloses your records to someone else without your consent.

•You are under age 18 and you are refused assistance in interpreting the contents of your records.

•You are poor and your written request for a free copy of your own records is denied.

•Your request for modification of inaccurate or misleading information in your records is denied.

•Your written statement about why you believe your records are inaccurate or misleading is not included in your records.

III. How to Protect or Enforce Your Rights

Civil Actions for Violating the Act
You can file a lawsuit in Illinois Circuit Court against any person who has violated any provision of the Mental Health and Developmental Disabilities Confidentiality Act. Any lawsuit should be filed no later than two years after the date that the person violated the Act.

The lawsuit should be filed in the county where the violation of the Act occurred or where the person who violated the Act resides. As a result of the lawsuit, you may have the following remedies:

1. Actual Damages. The judge can order that you be reimbursed for any monetary loss that you have suffered or other losses you have incurred as a result of the violation of the Act. This may include compensation for emotional pain and suffering.

2. Injunctive or Affirmative Relief. This is a court order requiring the person to do
something or to prohibit that person from doing something.
Examples: The injunction order could require the therapist to give you copies of your own records, or could prohibit the therapist from disclosing your records. If you requested that your records be corrected or modified, the injunction could require that the records be so modified.

3. Fees and costs. If you win a case against someone for violating the Act, the judge can order that person to pay your attorneys' fee and other costs of the case. To get an award of attorney's fees, you have to win your case. If you lose the case, the court will not make you pay the other person's attorney's fees, unless your claim was frivolous or brought in bad faith.

Criminal Penalties for Violating the Act
It is a Class A Misdemeanor for any person to knowingly and wilfully violate any provision of the Mental Health and Developmental Disabilities Confidentiality Act. If you believe that any person has violated your rights under the Act, you may contact the State's Attorney of the county where the violation took place, and ask that they prosecute the person. The State's Attorney has the discretion to decide which cases to prosecute.

IV. Where to Go for More Information

The Mental Health and Developmental Disabilities Confidentiality Act can be found at 740 ILCS 110/1.

Other Sources of Information
For additional information about your confidentiality rights, you may contact the following organizations:

The Guardianship and Advocacy Commission
Office of the Director
160 N. LaSalle St., Suite S-500
Chicago, IL 60601-3103
(312) 793-5900, or
421 E. Capital Ave., Suite 205
Springfield, IL 62701-1711
(217) 785-1540;
Statewide TTY (312) 793-5937.

 See a complete list of all of the GAC regional offices.

Equip for Equality, Inc.
11 E. Adams, Suite 1200
Chicago, IL 60603
(312) 341-0022 (V/TDD)
(800) 537-2632 9V/TDD)

See a complete list of all of the regional offices of Equip for Equality.

Illinois Mental Health Association
188 W. Randolph Street, Suite 2225
Chicago, IL 60601-2901
(312) 368-9070

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