Last updated: August 2006

(Chapter 11 Section 5 from Guidebook of Laws and Programs for People with Disabilities)

The Nursing Home Care Act

What Is It? An Illinois law which protects the rights and safety of residents of long-term care facilities.

What Is Its Purpose? To protect the rights of long-term care facility residents in connection with privacy, freedom from abuse or restraints and self-determination.

Who Can Benefit? Persons residing in Illinois long-term care facilities.

I. Your Legal Rights

The Nursing Home Care Act: In General

The Nursing Home Care Act (Act) is an Illinois law which protects the rights of residents of long-term care facilities. The Illinois Department of Public Health (IDPH) is the state agency given the authority to enforce this law. The Act applies only to those facilities which meet the definition of a Long-Term Care Facility.

A "long-term care facility" means a private home, institution, building, residence, or any other place which provides personal care, sheltered care or nursing for three or more persons, not related to the facility owner by blood or marriage. This includes skilled nursing facilities, intermediate care facilities, and shelter care facilities

The Nursing Home Care Act does not apply to:

• Facilities operated by the State or by the Federal government;
• Hospitals;
• A Community Living Facility
• A Community-Integrated Living Arrangements facility; or
• A Supportive Residence.

Note: Many long-term care facilities provide care to persons with mental illness or developmental disabilities. In this case, some parts of the Mental Health and Developmental Disabilities Code (MHDD Code) also will apply to the facility. For a detailed discussion of your rights under the MHDD Code, see the section of this Chapter titled "Rights of Recipients of Mental Health and Developmental Disabilities Services." However, many long-term care facilities are not familiar with the specific requirements of the MHDD Code, and you may need the assistance of an attorney in enforcing these rights.

Rights of Nursing Home Residents

You do not lose any of your rights simply because you reside in a long-term care facility. You have all of your rights as a U.S. citizen, including your right to vote and freedom of speech.

Personal Property and Clothing

You must be permitted to have and wear your own clothing, unless a doctor determines that this would be harmful to your health. If the facility provides your clothing, the clothes must fit you properly.

The facility must give you adequate and convenient storage space for your personal property. The facility must give you a safe and secure place to keep small items of value, and must allow you daily access to these items.

The facility must have a procedure for investigating complaints concerning theft of your property and must promptly investigate all such complaints.

Privacy of Bedroom Arrangements

If you are married and your spouse also lives in the facility, you must be allowed to reside in the same room, unless there is no room available in the facility or your doctor determines that you should not share the same room.

The facility cannot make you or let you share a room with a person of the opposite sex, unless you are married. Your bedroom must be in an area where no one will need to pass through your room to reach any other area of the building.

Religious Freedom

The facility must let you freely practice your own religion. Upon your request the facility administrator must make arrangements for you to attend religious services of your choice. The facility cannot impose on you any particular religious beliefs or practices, nor can it make you attend any religious services.

Medical and Personal Care

The facility must let you choose your own doctor, at your own expense. The facility must let you obtain complete and current information concerning your medical diagnosis, treatment and prognosis from your own doctor or from the doctor working for the facility. When the facility's doctor gives you this information, it must be in simple language that you can understand.

The facility must let you participate in the planning of your medical care to the extent that you are able to do so.

The facility must keep private your medical and personal care. Facility staff must keep confidential and conduct privately any discussions, consultations, examinations and treatment. The facility cannot allow people who are not directly involved in your care to be present for such private matters, without your permission.

The facility must let you refuse medical treatment and must inform you of the consequences of doing so. The facility may give you treatment against your wishes only if this is necessary to prevent harm to others.

Restraints and Confinement

The facility cannot physically restrain or confine you unless a doctor has determined that this is necessary for your care or safety. The facility cannot use restraints or confinement without first obtaining your consent, or the consent of your guardian, except in the case of an emergency.

If you are restrained, the facility must use the least restrictive form of restraint that is adequate to provide for your care or safety.

The facility may give you drugs only for the purpose of treating a medical condition. The facility may not give you drugs whose sole purpose is to subdue you.

Whenever a restraint is used, the facility must advise you of your right to have any person or agency you choose be informed of the fact that you are being restrained. If you ask the facility to notify the Guardianship and Advocacy Commission (GAC) about your restraint, the GAC must contact you to determine whether your rights are being violated. For more information about the GAC, see the section of this guidebook titled "Legal Advocacy for People with Disabilities," in Chapter 16, Miscellaneous Rights.

Communication and Visitation

The facility must provide convenient access to mailing facilities and telephones. The facility must allow daily visiting between 10:00 A.M. and 8:00 P.M. Facility staff must knock, except in an emergency, before entering your room.

The facility can place restrictions on your right to communicate by mail, telephone, or personal visits only if a doctor finds that this is necessary to protect you or others from harm, harassment or intimidation. If your communication is restricted in some way, the doctor must place the reason for the restriction in your record.

Facility staff must mail, without examination, all mail which you send to the Governor, members of the General Assembly, Attorney General, judges, state's attorneys, the Department of Public Health, or a lawyer. Likewise, facility staff must deliver to you, without examination, all mail which these officials mail to you.

The facility cannot allow any visitors to enter your private living area without first receiving your permission. Any visitors must leave your living area if you so request.

Working for the Facility

The facility cannot require you to perform work for the facility.

Residents' Funds

The facility must let you manage your own financial affairs, unless you or your guardian give written permission to the facility to manage your finances.

The facility may hold and/or handle your money only if you or your guardian give written permission. If the facility holds or handles your money, it must provide you or your guardian with a written itemized statement at least quarterly, of all transactions involving your funds.

Upon your written request, the facility must return all or any part of your money which was given to the facility for safekeeping, including any interest accrued from deposits of $100 or more.

Abuse and Neglect

You are entitled to be free from abuse and neglect. If you are abused or neglected, the facility administrator must immediately report this to your guardian or family, and also to IDPH.

Discharge at Your Request

The facility must discharge or transfer you at your request or at the request of your guardian.

Involuntary Discharge or Transfer

The facility may involuntarily discharge you from the facility or transfer you to another facility only for the following reasons:

• For medical reasons;
• For your own safety, or the safety of other residents or staff; or
• Non-payment.

If you reside in a facility that fully participates in the Medicaid program, and if you apply for Medicaid, the facility cannot discharge you because you become unable to pay with your own funds. In some facilities, only certain portions of the facility participate in Medicaid. In this case, the facility can discharge you if you reside in a portion of the facility that does not participate in Medicaid and you become unable to pay.

Residents' Advisory Council

Every long-term care facility must have a Residents' Advisory Council (council). This council is intended to provide an opportunity for residents and family members to do the following:

• Obtain and share information affecting residents;
• Create and share ideas about improvements or changes to the facility and its programs; and
• Identify and discuss problems with the facility.

If the council identifies problems with the facility or staff, or if it has suggestions for improvements, the council can inform the facility director about these matters. The council also may present complaints on behalf of a resident to the Illinois Department of Public Health, or to any other person or agency that the council considers appropriate.

The council adopts rules setting the number and make up of council members. At a minimum, the council must have at least five members who are residents of the facility. If there are not five residents of the facility who are legally competent, then the council may be composed of family members of residents. In facilities of 50 beds or less, the Resident Advisory Council may consist of all of the residents of the facility, if the residents choose to operate this way.

The resident council members are elected to the council by vote of their fellow residents. The nonresident members are elected to the council by vote of the resident members of the council. All Resident Advisory Councils must elect at least a Chairperson or President and a Vice Chairperson or Vice President from among the members of the council. These people will conduct the meetings of the council, assisted by the facility staff person designated by the administrator.

Large facilities also can have mini-resident advisory councils for various smaller units within the facility. If this is done, each unit within the facility must be represented on the overall facility Residents' Advisory Council.

Employees of the facility cannot be members of the council. However, the facility staff may attend council meetings when they are invited by a majority of the officers of the Residents' Advisory Council.

All Residents' Advisory Council meetings must be open to participation by all residents and by their family members or guardians. The council must meet at least once each month with the staff coordinator who provides assistance to the council, and a report of the council meetings must be available to all residents and facility staff.

II. How to Protect or Enforce Your Rights

Your Options

If a facility violates your rights, you have several options. You can do one of the following:

• File a complaint with the Illinois Department of Public Health (explained below);
• File a private lawsuit (explained below); or
• File a complaint with the Long-Term Care Ombudsman. (explained below)

As stated above, the Residents' Advisory Council also has the authority to file a complaint with IDPH or the Ombudsman on behalf of facility residents. However, only you or your legal representative may file a private lawsuit concerning a violation of your rights. Each of these options is discussed in detail below.

Filing a Complaint with IDPH

If you believe that a facility is violating the Act, you may file a complaint with Illinois Department of Public Health (IDPH). It is a crime to intentionally file a false complaint.

You may contact IDPH and file a complaint at:
Illinois Dept. of Public Health
Attn: Central Complaint Registry
535 W. Jefferson St.
Springfield, IL 62761

To file a complaint by phone, contact the Central Complaint Registry at (800) 252-4343.

Upon receiving your complaint, IDPH will conduct an investigation. IDPH must complete the investigation of complaints involving abuse and neglect within 7 days. They must complete other investigations within 30 days. If the investigation shows that the facility is in violation of the Act, IDPH will send a notice of the violation to the facility.

IDPH will not require you to give your name when you file a complaint. But if you do not give your name, IDPH will be unable to notify you of the outcome of their investigation. IDPH will not reveal your identity as the person who filed the complaint without your written permission, unless IDPH needs to file a court case against the facility or it is essential to the investigation.

The facility cannot transfer, discharge, evict, harass, or retaliate against you because you make a complaint or provide information in connection with an IDPH investigation.

Upon completing the investigation, IDPH will notify you and the facility of the results of their investigation. If IDPH decides that the facility has violated the Nursing Home Care Act, IDPH can impose fines and other penalties on the facility. In extreme cases, IDPH also can revoke the facility's license and force them to shut down.

If IDPH determines that the facility did not violate the Nursing Home Act, you are entitled to file an appeal and get a hearing. You must make the appeal in writing and you must file it with IDPH within 30 days of the notice of the investigation findings.

IDPH will hold a hearing within 30 days of your appeal. You are entitled to appear and testify at the hearing. The hearing officer can issue subpoenas to force other people to appear and testify or provide other evidence. You can be represented by a lawyer at the hearing. Following the hearing, the Director of IDPH will send you a written decision.

If you disagree with the Director's decision, you are entitled to file a complaint in Illinois Circuit Court. You must file this Complaint within 35 days of the IDPH decision. You or your lawyer will have the opportunity to make written and oral arguments in support of your case. The judge will then decide whether the hearing officer fairly considered the facts and properly applied the law. The judge can uphold or reverse the hearing decision, or remand the case to be reevaluated in accordance with the judge's instructions.

Private Lawsuit

In addition to or instead of filing a complaint with IDPH, you are entitled to file a lawsuit against a facility if they violate your rights under the Nursing Home Care Act. You also may file a lawsuit if you are injured as a result of a wrongful action by the facility or its staff.

If you file a lawsuit and the judge or jury decides that the facility violated your rights, the judge can require the facility to pay you compensation for your losses. If it is determined that the facility violated your rights protected by the Act, the judge also will order the facility to pay your court costs and attorney's fees. The judge also can enter an injunction, which is a court order requiring the facility stop violating the Act.

The facility cannot transfer, discharge, evict, harass, or retaliate against you for filing a lawsuit or for providing testimony in connection with a lawsuit filed by someone else.

Filing a Complaint with the Long-Term Care Ombudsman

The Long-Term Care Ombudsman Program is operated by the Illinois Department on Aging. The Ombudsman has the legal duty to investigate and resolve complaints made by residents or the representatives. The Ombudsman can advocate for your rights and seek to have the facility voluntarily comply with the requirements of the Act. If the facility will not correct the violation, the Ombudsman can assist you with a complaint to IDPH. To find the Long-Term Care Ombudsman program for your area, call the Illinois Department on Aging at (800) 252-8966.

Appealing a Discharge or Transfer

If the facility seeks to discharge or transfer you, they must give you written notice at least 21 days in advance. If you disagree, you may file an appeal. You must make your appeal in writing and file it with IDPH within 10 days after you receive the notice of discharge or transfer.

If you file an appeal, the facility cannot discharge or transfer you while the appeal is pending. If there is an emergency which threatens the safety of you or others, the facility may discharge you without advance notice. In this case, you may be returned to the facility if you win your appeal.

Upon receiving your appeal, IDPH will conduct a hearing at the facility within 10 days. You are entitled to be at the hearing, testify, and present witnesses and other evidence in support of your case. You are entitled to be represented by a lawyer or other advocate of your choice. IDPH will then issue a written decision within 14 days after the hearing. Even if IDPH rules against you, the facility will not discharge you within less than 34 days after the date you received the original discharge notice.

If the IDPH hearing officer rules against you, you are entitled to file a complaint in Illinois Circuit Court. You must file this Complaint within 35 days of the IDPH decision. You or your lawyer will have the opportunity to make written and oral arguments in support of your case. The judge will then decide whether the hearing officer fairly considered the facts and properly applied the law. The judge can order that you not be discharged or transferred, can uphold the decision to discharge or transfer you, or can remand your case to be reevaluated.

III. Where to Go for More Information

Statutes and Regulations

The Nursing Home Care Act is found starting at 210 ILCS 45/1. Involuntary discharge, transfer and related appeals are at 210 ILCS 45/3-401 to 3-423. Residents rights are at 210 ILCS 45/2-101 to 45/2-212. IDPH investigations of complaints and related appeals is found at 210 ILCS 45/3-701 to 3-714.

IDPH regulations concerning residents rights in skilled nursing facilities and intermediate care facilities are found at 77 Ill.Admin.Code 300.3210 to 300.3330. (Subpart P). Resident's rights in sheltered care facilities are found at 77 Ill.Admin.Code 330.4210 to 330.4330. (Subpart Q). Resident's rights in intermediate care facilities for people with developmental disabilities are at 77 Ill.Admin.Code 350.3210 to 350.3330. (Subpart O). Administrative appeals are found at 77 Ill.Admin.Code Part 100.

The statute creating the long-term care ombudsman program is at 20 ILCS 105/4.04. Regulations about this program are at 89 Ill.Admin.Code Part 270.

Long-term care facilities that participate in the Medicare or Medicaid programs must comply with federal laws concerning residents' rights. The federal statute is at 42 USC 1395i-3 (Medicare) and 42 USC 1396r(c). The federal regulations are at 42 C.F.R. Part 483.

The address and general phone numbers and  for IDPH are:
Springfield Office
535 W. Jefferson St.
Springfield, IL 62761
(217) 782-4977(v)
(800) 547-0466(TTY)

Chicago Office
160 N. LaSalle St.
Chicago, IL 60601
312-814-5278 (V)

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