Disabilities Guidebook: Nursing Home Care

Disabilities Guidebook: Nursing Home Care

Last updated: April 2013

(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 (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 Act does not apply to a:

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

Note: Many Facilities provide care to persons with mental illness or developmental disabilities so portions of the Mental Health and Developmental Disabilities Code (MHDD Code) may also apply to a 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 Facilities are not familiar with the specific requirements of the MHDD Code, so you may need the assistance of an attorney in enforcing these rights.

Rights of Nursing Home Residents

The Act ensures you retain all your most basic rights when you are living in a Facility. The following is a list of these rights guaranteed by the Act.

Free Speech

You have the right to vote and free speech while you are at a Facility.

Spousal impoverishment

The Facility must inform you and your spouse about spousal impoverishment rights when you are admitted to a Facility.

Managing Your Finances

You must be allowed to manage your own financial affairs unless you have a guardian who authorizes the administrator of the Facility in writing to manage your affairs.

Personal Property

You must be permitted use personal property and wear your clothing in your immediate living quarters, unless deemed medically inappropriate by a physician (which must be documented in your clinical record). If clothing is provided to you by the Facility, it must fit properly.

Storage

The Facility must provide adequate storage space for your personal property and a means of safeguarding your valuables in your room. The Facility must try to prevent loss and theft of your property which can include monitoring, labeling property, and conducting frequent property inventories. The Facility must promptly investigate all theft complaints.

Personal Physician

You have the right to retain the services of your own personal physician (at your own expense).

Facility Physician

You have the right to obtain understandable information from the Facility physician concerning your medical diagnosis, treatment and prognosis. You must be permitted to participate in the planning of your care and medical treatment to the extent that your condition permits. You may not be subjected to experimental research or treatment without written consent.

Medical Treatment

All medical treatment and procedures shall be administered as ordered by a physician. All new physician orders shall be reviewed by the Facility's nurse within 24 hours after being issued. All physician's orders and plans of treatment must be signed by the physician (a stamp signature with the physician’s initials is insufficient).

Refusing Medical Treatment

You may refuse medical treatment unless it is documented by a physician in your clinical record that your refusal would be harmful to the health and safety of others.

Access to Your Medical Records

You (or your guardian) have the right to inspect and copy all your records concerning your care which are kept by the Facility but you can be charged a reasonable fee for copying.

Do-Not-Resuscitate Orders

The Facility must have a policy for physician orders limiting resuscitation which are commonly known as "Do-Not-Resuscitate" orders.

Information about Health Care Surrogates

If you do not have a power of attorney or guardian, you must be provided written information about your right to name a health care surrogate who should be consulted if you are unable to make health care decisions for yourself. This information must be provided to you within 30 days of your being admitted to the Facility.

Mental Health Screening

If you are admitted to a Facility with a diagnosis of serious mental illness, then you must be re-screened after 90 days and again after 6 months. After the first years, you must be annually screened to assess your continuing need for the Facility.

Privacy in Being Treated

You have the right to privacy in your medical and personal care program. Your case discussion, consultation, examination, and treatment must be confidential and conducted discreetly. Anyone not directly involved in your care should not be present when you are being treated unless you consent.

Physical Restraints

A restraint may be used only with your informed consent and only if it is the least restrictive means necessary. A restraint may be used only after less restrictive measures have not worked.

Emergency Treatment: If you need emergency care, restraints may be used for brief periods for medical treatment unless you have previously told the Facility you are refusing the treatment.

Person Applying Restraint Must Be Trained: A restraint may be applied only by a person trained in the application of the particular type of restraint.

Right to Inform a Third Party: Whenever a restraint is used, you must be advised of your right to have a person or organization, such as the Illinois Guardianship and Advocacy Commission (GAC), notified of the use of the restraint which must be notified within 24 hours. If GAC is notified, it will contact you to determine if the restraint is necessary. For more information about GAC, see the section of this guidebook titled "Legal Advocacy for People with Disabilities," in Chapter 16, Miscellaneous Rights.

Restraints Cannot Be Used For Punishment or Convenience: Restraints or confinements cannot be used for the purpose of punishment or for the convenience of Facility personnel. No restraints or confinements shall be employed except as ordered by a physician who documents the need for such restraints or confinements in your clinical record.

Definition of Restraint: A physical restraint is anything which cannot be removed easily and restricts freedom of movement. Any drug used for discipline or convenience is considered a restraint. Devices used for positioning such as bed rails, gait belts, are not considered restraints under the Act. 

No Unnecessary Drugs

You must not be given unnecessary drugs by the Facility. A drug is unnecessary if it is excessive (dose or duration) or is given without adequate monitoring.

Psychotropic medication

Psychotropic medication may not be prescribed without your informed consent. Psychotropic medication means medication that is used for antipsychotic, antidepressant, antimanic, or antianxiety behavior modification.

Resident identification wristlet

You are not required to have an identification wristlet unless it is ordered by a physician who documents that it is necessary in your clinical record.

Right to Mail, Phone, and Visitation

You have the right to private communication by mail, telephone, or visitation. You have the right to private visits at any reasonable hour unless they are not medically advisable. While a physician can restrict your mail to protect you from harm, letters from government officials or attorneys may not be read by Facility staff before being delivered to you.

Rooming with a Spouse

You have the right to reside in the same room with your spouse unless there is no room available in the Facility or it is deemed medically inadvisable by your physician.

Freedom of Religion

You have the right to practice your religion. You may request that the Facility make arrangements (at your expense) for you to attend religious services. This right includes the Facility not being able to impose a religion or religious services on you. 

Resident Advocate Visitors

You have the right to have an advocate visit at reasonable hours to the Facility to help you in asserting your rights.  

Complaints

You have the right to file complaints with the Facility administrator, the Long-Term Care Facility Advisory Board, the Facilities advisory council, State agencies. The Facility may not retaliate for your filing complaints and must provide you with the contact information of the appropriate State governmental office where complaints may be filed.

Screening prior to admission

You must be screened before entering a Facility to determine the need for services. If you need mental health services, the screening shall also include an evaluation of whether there is a community based housing option which would allow you to live in the community. Screening for mental illness must be performed by a licensed professional (e.g. psychiatrist, a psychologist, a registered nurse certified in psychiatric nursing, a licensed clinical professional counselor, or a licensed clinical social worker).   

Residents’ Council

Each Facility must have a residents' advisory council. No employee of the Facility may be a member of the council but Facility staff does help facilitate the council. The council must meet and its purpose is:

  1. Obtaining and disseminating information to residents;
  2. Making recommendations to the Facility about programing and improvements;
  3. Identifying and recommending solutions to Facility problems; and
  4. Presenting resident complaints with IDPH.
Vaccinations

You have the right to have an influenza vaccination by November 30 of each year or as soon as practicable if vaccine supplies are not available before November 1. Residents admitted after November 30 and during the flu season must receive an influenza vaccination before admission (or as soon as practicable if vaccine supplies are limited) unless the vaccine is medically inadvisable.

Working for the Facility

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

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.

Contesting a Discharge or Transfer

You have the right to contest the decision to transfer or discharge you by filing a Request for a Hearing with the Illinois Department of Public Health within 10 days after receiving the discharge notice.  If you wish to contest the proposed involuntary transfer or discharge, the Facility will provide you a Request for Hearing Form and a pre-addressed envelope provided which should be mailed to the Department of Public Health, Hearings Review Office, 535 W. Jefferson St., Springfield, IL 62761. You may also fax your Request for Hearing to Illinois Department of Public Health, Attention: Hearings Review Office at 217-557-3497.

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.

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 complaint. 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.

Assistance in Contesting a Discharge or Transfer

For assistance in contesting a discharge, you can contact the Illinois Long-term Care Ombudsman Program by calling the Illinois Department on Aging, Senior Helpline, toll-free at 800-252-8966 or by writing to the Illinois Department on Aging, 421 E. Capital Ave., Springfield, IL 62701.

The agency responsible for the protection and advocacy of the developmentally disabled or mentally ill individuals is Equip for Equality, Inc., 20 N. Michigan Ave., Suite 300, Chicago, IL 60602, 312-341-0022, (Voice) 800-537-2632, (TTY) 800-610-2779, (Fax) 312-341-0295.
 

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:

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. Click here for the complaint form.

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
Fax: (217) 524-8885

To file a complaint by phone Monday-Friday 8:30 a.m. to 4:30 p.m., contact the Central Complaint Registry at (800) 252-4343 or TTY for the hearing impaired at (800) 547-0466.

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. 

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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