Health & Benefits

The Mental Health and Developmental Disabilities Confidentiality Act (MHDDCA)

This Illinois law is designed to protect informational privacy. The MHDDCA aims to prevent the disclosure of your mental health records without consent. The act also gives you the right to seek correction of records that you believe are inaccurate. 

All people who receive mental health or developmental disabilities services benefit from this act. 

Information protected by the Act

The Act applies to mental health or developmental disability service records kept by a therapist or an agency providing such services.

The term records include all documents about you and the services provided to you. These documents include:

• Physical or mental exams,
• Diagnosis,
• Treatment or training,
• Evaluations,
• Medications,
• Aftercare,
• Habilitation and rehabilitation, and
• 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 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 protects written records and information you give to your therapist in the course of receiving services. It also protects all exchanges you make while you receive services. Records and communications stay confidential even after death, unless there is consent or good cause shown.

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

Who has the right to obtain records protected by the Act?

You have the right to inspect and copy your 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 personal representative of a recipient under HIPAA, regardless of the recipient's age,
• 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, and
• An attorney-in-fact named in a declaration of preferences or instructions regarding mental health treatment.

Disclosure of records to parents of children ages 12 to 18

A guardian of a recipient 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 provided, and
• Treatment and services needed.

The parent or guardian may have access to other kinds of service records if the child does not object. Also, if the therapist does not feel strong reasons to deny you access. If the therapist or child denies access to those records, the parent or guardian may file a court action.

Disclosure upon written consent

Any person not within one of the categories may obtain access to records only through written consent. The consent must be made by:

• The person who is the subject of the records,
• Their parent,
• Guardian,
• Power of Attorney agent, or
• Attorney-in-fact named in a mental health treatment declaration. 

For example, suppose a person wants to get records of an adult who has a legal guardian. In that case, the person must obtain the legal guardian's written consent. If a person wants to get a child's records, the person must get a parent or guardian's written consent.

Parental consent for disclosure of a therapist's records only needs the consent of one parent.

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

• The name of the person or agency who is permitted to obtain the record,
• The reason that the record is being disclosed,
• The kind of records to be disclosed,
• The date when the consent ends, and
• The right to revoke consent at any time.

The consent form must be signed and witnessed.

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 must also include: 

• a statement detailing the right to revoke the consent at any time, and 
• the consequences of refusing to give consent.

The therapist or other person holding the records can release them if they receive a proper, written consent form. However, the person holding the records should release only those records that are specified in the consent form.

Re-disclosure of records

The person or agency that received disclosed records generally may not re-disclose those records. There are exceptions, including getting a court order or the person's written consent.

For example, a consent authorizing giving treatment records to your residential treatment program. The program cannot give 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 you have revoked the consent.

Exceptions that allow records to be disclosed without consent

In some situations, people can review or obtain copies of your treatment records without your consent. Those situations are as follows:

Insurance 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 cannot grant 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, and
• Other information, but only if necessary to determine the benefits you should receive.

Co-workers and supervisors

A therapist may reveal your records to co-workers or other therapists assisting them, when disclosure is needed to provide care. A therapist may reveal a patient's records to his supervisors 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

These state agencies or departments may disclose information to each other about you if you receive services:

• The Illinois Department of Human Services (Public Aid),
• The Illinois Department of Public Health, and
• The State Board of Education.

They may disclose so that the agencies can coordinate the services provided. However, the disclosure can only generally describe the services you received or will receive. The agencies should not disclose clinical and treatment records without your consent.

Protection from harm

A therapist may disclose records if it is necessary to protect you from serious harm. They may also disclose to prevent you from causing immediate and serious harm to others. In certain cases, disclosures may be made to:

• The police,
• The State's Attorney's Office, and
• The Attorney General's Office.

A disclosure is permitted to protect a person against whom you have threatened violence.

Disclosure in legal proceedings

In any legal proceeding, you or your therapist have the privilege to refuse to disclose and to prevent the disclosure of patient records or communications. There are some exceptions to this rule. The exceptions are limited, and include:

• Cases when you have introduced your mental condition into the legal proceedings as a claim or defense, 
• Cases to decide if you need a legal guardian, 
• Cases involving a court-ordered examination, as long as you were informed before the exam that your records would not be confidential, 
• Cases involving your payment or nonpayment for mental health services,
• Cases to determine your fitness to stand trial, if the records were made within the 180 days immediately  before the date of the therapist's, psychologist's, or psychiatrist's court appointment, 
• Cases involving a petition filed under the Juvenile Court Act for wardship of a child, 
• Cases involving an abused, neglected, or dependent child, if you are the parent, guardian, or legal custodian.

Before the records can be disclosed, the judge or hearing officer must privately review the records. The judge will permit disclosure only if the need for the records outweighs the need to protect your privacy.

An attorney who represents a minor in any court proceeding may have access to protected records. They must obtain the approval of the judge or hearing officer.

Records that may not be released

Notes

A therapist's personal notes regarding your services are the personal property of the therapist. They are not part of your record, and the court proceeding cannot compel the therapist to disclose.

Personal notes include:

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

Test materials

The therapist cannot release psychological test materials if it would compromise the testing process. For certain types of tests to be valid, the person must not have previous knowledge of the contents of the test. Any test taker is entitled to have all testing records disclosed to another psychologist.

Reviewing or disputing the records

Assistance in reviewing your own records

If you are under 18 and inspecting your own records, you can get help interpreting them. 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 meaning.

You cannot be denied access to your records because 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 low-income and are requesting your records, you are entitled to obtain copies for free. You must make a request in writing.

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 the information in any record is incorrect, you can ask the therapist to correct it. If the therapist refuses, you can file a complaint in state court seeking a court order.

You can submit a written statement to the therapist explaining why you believe the information is wrong. Your written statement becomes part of your record. Whenever the disputed part of your record is disclosed, the therapist must provide your written statement.

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 treatment records,
• Your records are disclosed to someone without written consent, unless one of the exceptions applies,
• You give written consent for the disclosure, but the therapist discloses more information than is allowed,
• 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 low-income and your written request for a free copy of your records is denied,
• Your request for modification of inaccurate or misleading information in your records is denied, or
• Your written statement is not included in your records.

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

Civil actions for violating the Act

You can file a lawsuit in Illinois Circuit Court against any person who has violated the 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. Alternatively, 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 loss 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. The injunction order could require the therapist to give you copies of your records. It could also prohibit the therapist from disclosing your records. If you requested that your records be corrected or modified, the injunction could require that modification.
3. Fees and costs. If you win a case against someone, the judge can order that person to pay your attorney's fees and other costs. 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 violate any provision of the Act. If you believe that any person has violated your rights under the Act, you may contact the State's Attorney. You should contact 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.

Where to go for more information

Statute

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

Other resources 

For additional information about your rights, you may contact the following organizations:

The Illinois 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