Senior Citizens Handbook - Assisted Living and Shared Housing

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Author: Prairie State Legal Services
Last updated: March 2009

(Chapter 4 Section 3 of Senior Citizens Handbook)

What It Is: “Assisted Living Facilities (ALFs) and “Shared Housing Establishments” (SHEs) offer alternatives to nursing homes for elderly persons who are at risk if living alone but do not require nursing care. Residents live in their own apartments but are provided certain mandatory services, including meals, housekeeping, laundry and assistance with activities of daily living. Residents generally pay for these facilities with their own resources. Medicaid will not pay for them.

Where To Apply: The Illinois Department of Public Health must license ALFs and SHEs. For a list of ALFs and SHEs in Illinois, see the IDPH website at the end of this Section.

Who May Be Eligible: Any adult person who needs assistance to accomplish some basic activities of daily living, but who does not require nursing care. Persons can be excluded from residency if they have certain conditions or need a certain level of assistance.

Assisted Living and Shared Housing, In General

In January 2001, the Illinois Department of Public Health (IDPH) began requiring Assisted Living Facilities (ALFs) and Shared Housing Establishments (SHEs) to have a license. They are required to offer certain “mandatory services,” including secure housing, laundry, housekeeping, three meals per day, an emergency response system and assistance with some “activities of daily living.”

“Activities of daily living” means eating, dressing, bathing, toileting, transferring or personal hygiene.

The license is required even if the facility does not offer the mandatory services directly but arranges for them under contract.

You should not confuse these types of facilities with Supportive Living Facilities (SLFs) which are discussed in the next Section.

An Assisted Living Facility (“ALF”) is a residence for at least 3 unrelated adults, at least 80% of whom must be age 55 or older. It must meet certain requirements relating to services, care and physical environment.

A Shared Housing Establishment (“SHE”) is a residence for 16 or fewer persons, at least 80% of whom are age 55 or older. An SHE must meet the same requirements relating to services and residential care as those for ALFs. However, an SHE has somewhat different requirements relating to physical environment and staffing.

Most residents generally pay the cost for care from their own financial resources or with long-term care insurance. Medicaid will not pay for an ALF or an SHE.

The level of care provided by an assisted living facility (ALF) is very similar to the level of care provided by a supportive living facility (SLF). The primary difference between the two is that Medicaid can pay for an SLF but there is no source of public payment available for care in an ALF.

ALFs come in all shapes and sizes, from single family homes with only a few residents to large communities with hundreds of residents. They can be freestanding or part of a retirement community or a continuing care community. They can be independent or affiliated with a nursing home.

Choices vary from studio, single or double rooms, to suites or apartments and are usually within a multi-unit residential setting. You may have your own living quarters or you may choose to share quarters with a spouse or roommate.

Who is Eligible To Live in an ALF or SHE?

Residency Requirements

To live in a facility, you must be an adult. There is no other age requirement, except that for the ALF or SHE to be licensed, at least 80% of the residents must be 55 or older.

In order for you to be accepted for residency or remain in residence at an ALF or SHE:

  • The facility must be able to provide or secure appropriate services for you;
  • You need a level of service or type of service for which the facility is licensed; and
  • The facility must have sufficient staff with appropriate skill to provide those services.

Who Can Be Excluded from Residency

You cannot be accepted for residency, and your residency can be terminated if any of the following circumstances exist:

  • You pose a serious threat to yourself or others;
  • You are not able to communicate your needs in any way and you do not have a representative living in the facility who can direct the provision of services to you and who has a prior relationship with you;
  • At any given time, you need help with an activity of daily living assistance from more than one paid care-giver;
  • You need “total assistance” with 2 or more activities of daily living. “Total assistance” means that staff or another individual performs the entire activity of daily living without your participation;
  • You need more than “minimal assistance” in moving to a safe area in an emergency. “Minimal assistance” means that you are able to respond, with or without assistance, in an emergency to protect yourself, given the staffing and construction of the building;
  • You have a severe mental illness where you are substantially disabled in the areas of self-maintenance, social functioning, activities of community living and work skills, and the mental illness is expected to be present for a period of not less than one year. Persons with Alzheimer’s disease and other forms of dementia based on organic or physical disorders are not excluded;
  • You need any of the following treatment that cannot be self-administered or administered by a qualified, “licensed health care professional”: intravenous therapy; intravenous feedings; gastronomy feedings; insertion, sterile irrigation and replacement of catheter; sterile wound care; sliding scale insulin administration; and routine insulin injections for diabetics. A “licensed health care professional” means a registered professional nurse, an advanced practice nurse, a physician assistant or a licensed practical nurse;
  • You need treatment of stage 3 or stage 4 decubitus ulcers or exfoliative dermatitis; or
  • You need 5 or more skilled nursing visits per week for a period of 3 consecutive weeks or more (unless you need to go beyond 3 weeks for temporary rehabilitative purposes).

If any of the above exclusions apply to you, the facility may nevertheless decide to let you stay there if you become terminally ill and qualify for licensed hospice care.

Many of the above exclusions will not apply if you are quadriplegic or paraplegic, or if you have neuro-muscular diseases (such as muscular dystrophy and multiple sclerosis) or other chronic diseases and conditions, and:

  • You are able to communicate your needs
  • You do not require assistance with complex medical problems and
  • The facility is able to accommodate your needs

Admission and Intake

Assessment by a Physician

Before you can be admitted to a facility, a doctor must complete a comprehensive assessment of your condition. The assessment will include an evaluation of your physical, cognitive, and psychosocial condition, and must test for tuberculosis. At the time of admission, the assessment must reflect your current condition and must not have been done more than 4 months beforehand. It is your responsibility or that of representative to
have doctor’s assessments and reassessments completed.

After you move in, a doctor must perform a new comprehensive assessment every year, or whenever staff has observed a significant change in your condition.

Service Plan

Based on the assessment, the facility must develop a service plan with which both you and the facility must agree. It will serve as a basis for the service delivery contract between you and the facility. The facility must respect and accept your choices regarding the service plan. The plan may provide for the disconnection or removal of any kitchen appliance.

The service plan must be reviewed, and revised if necessary, annually or immediately after a significant change in your condition, preferences or service needs.

All persons involved in the development of the service plan must sign and date it. The service plan must be developed by:

  • You or your representative or any other person that you request be involved;
  • The manager or manager’s designee; and
  • A registered nurse, if you are receiving nursing services or medication administration, or if you are unable to direct self-care.

Service plans must address all of the following:

  • The level of service you are receiving, including: assistance with activities of daily living; dietary needs, if the facility provides therapeutic diets; and special accommodations for the resident;
  • The amount, type and frequency of health-related services you need;
  • Staff responsible for the provisions of the service plan;
  • All support services that the facility provides or arranges;
  • Whether you need medication reminders, supervision of self-administered medication or medication administration; and
  • Any risk being negotiated.

“Negotiated Risk” refers to a process by which you or your representative negotiate with the facility what risks each are willing and unwilling to assume with respect to services and the living environment. The facility must explain to you or your representative the risks of these decisions and the potential consequences of assuming these risks. See the sub-section below on “Negotiated Risk Agreements.”

You or your representative have complete ability to direct your own care and to negotiate the terms of your own care. You also have the right to refuse certain services or approaches that would otherwise be recommended based on the physician’s assessment, provided that you have received clear information regarding the risks and benefits of such a choice and the choice does not put other residents or staff at risk. The service plan must document any disclosure of the risks of refusing services or approaches.

Service Requirements

Each facility must provide all “mandatory services” and may provide “optional services.” In doing so, the facility may not prevent your doctor from also providing services to you.

Mandatory Services

These are the services that each facility must provide for you:

• Three (3) meals per day, prepared by the facility or an outside contractor;
• Housekeeping services including, but not limited to, vacuuming, dusting and cleaning your unit;
• Personal laundry and linen services, either provided or arranged by the facility;
• Security provided 24 hours each day including but not limited to locked entrances or building or contract personnel;
• An emergency communication response system, which is a procedure in place 24 hours each day by which you can notify building management or an emergency response vendor, or others able to respond to your need for assistance and;
• Assistance with those activities of daily living that you need (eating, dressing, bathing, toileting, transferring or personal hygiene).

Optional Services

Medication Services

A facility is not required to provide medication-related services, but if they do, they must follow the rules described below. The fee schedules outlining the cost of these services must be included in the resident contract.

Before admission to a facility that does not provide medication administration as an optional service, their staff must advise you to consult a physician to determine whether you should obtain a vaccination against pneumonia or the flu, or both.

A facility that does provide medication administration as an optional service must annually (and at certain times of year prior to admission) administer a vaccination flu shot to each resident. However, you have the right to refuse this vaccine. Also, the facility should not administer the shot if it would be harmful to your health.

A doctor, pharmacist or registered nurse must approve the facility's medication policies. Those policies must address:

  • Obtaining and refilling medication;
  • Storing and controlling medication;
  • Disposing of medication;
  • Assisting in the self-administration of medication and medication administration; and
  • Documenting medication assistance provided to residents and maintaining medication records.

Medication reminders
A facility staff member can remind you to take pre-dispensed medication, observe you taking it or applying it yourself and document whether or not you took the medication.

Supervision of self-administered medication
Facility staff under the direction of a licensed health care professional can help you with the medication by reading the label to you; checking the prescribed dosage against the label; confirming that you have taken the dosage as prescribed; or documenting whether you have taken or refused to take the medication. If you are physically unable to open the container, the staff may open the container for you.

Medication administration
A licensed health care professional employed by the facility can administer routine insulin and vitamin B- injections, oral medications, topical treatments, eye and ear drops or nitroglycerin patches. Non-licensed staff may not administer any medication.

The facility must maintain a drug reference guide, no older than 2 years from the copyright date and keep it available and accessible for use by employees.

Medication Storage
If the facility stores any medication, the storage must meet the following requirements. The medication must be:

  • Stored in a locked container, cabinet or area that is inaccessible to residents;
  • Not left unattended by an employee;
  • Stored in the original labeled container (except for medication organizers), and according to instructions on the label;
  • Not stored in bathrooms or laundry room; and
  • Disposed of properly when expired or discontinued.

Medication Records
The facility must maintain a separate medication record for each resident receiving medication administration. The record must include the:

  • Name of resident;
  • Name of medication, dosage, directions and route of administration;
  • Date and time the medication is scheduled to be administered;
  • Date and time of actual medication administration; and
  • Signature or initials of the employee administering medication.

Other Optional Services

Many ALFs provide a range of optional services at an additional cost. These optional services may include transportation to the doctor, money management or banking, beauty shop, postage or mailing, help with shopping, meals for visitors and guests and premium meals on-site at restaurants. These services are required to be described in the contract with current pricing so that the resident knows generally what to expect.

Persons Who Are Quadriplegic, Paraplegic, or Who Have Neuro-Muscular Diseases

If you are a quadriplegic or paraplegic, or have a neuro-muscular disease, such as muscular dystrophy and multiple sclerosis, then the facility must:

  • Enter into a written agreement with you describing how your special needs shall be met; and
  • Allow assistance by more than one person for safety reasons.

Persons with Alzheimer’s Disease

Residents suffering from Alzheimer’s or dementia are subject to additional evaluations prior to admission. The facility must determine whether it can provide secure, appropriate care and has appropriate staff and skills. The regulations describe the required assessments.

If the facility offers a special program for Alzheimer’s and dementia patients, it must meet additional standards in order to maintain its license. The special care provided must be disclosed to a resident upon request. As part of those standards, the facility must:

  • Make sure there is a representative designated for the resident
  • Provide for appropriate cognitive stimulation and activities to maximize functioning, including a structure and rhythm that are comfortable and predictable
  • Offer an appropriate balance of rest, activity and private and social time
  • Allow residents to express their accustomed social roles
  • Offer residents access to familiar activities that they enjoy doing and that tap memories and retained abilities
  • Provide the flexibility to accommodate variations in the resident’s mood, energy level, and inclination
  • Provide at least 1.4 hours of services per resident per day (including assistance with activities of daily living, activities-based programming, and services delivered to the resident to meet the unique needs of residents with dementia)
  • Require the manager and direct care staff to complete comprehensive and ongoing dementia and cognitive deficit training
  • Develop emergency procedures and staffing patterns to respond to the needs of residents
  • Provide encouragement to eat snacks and meals and to take liquids
  • Have an Alzheimer’s program supervisor with specified training

Resident Rights

Basic Rights

As a resident, you have all rights guaranteed under the Constitutions of the United States and the State of Illinois. In addition, you have the right to:

  • Live in an environment that promotes and supports your dignity, individuality, independence, self-determination, privacy, choice and to be treated with consideration and respect
  • Respect for bodily privacy and dignity at all times, especially during care and treatment
  • Keep personal property that does not infringe on the safety of others, and a place to store personal items that is locked and secure
  • The right to designate any individual to participate with you or in your name in the development of the written service plan
  • Receive the services specified in the service plan, to review and renegotiate the service plan at any time; and to be informed of the cost of the changes
  • Direct and negotiate the terms of your own care
  • Refuse services unless such services are court ordered or the health, safety or welfare of other individuals is endangered by the refusal, and to be advised of the consequences of that refusal
  • Freely choose selected activities, schedules and daily routine
  • Freely choose a primary care provider, pharmacy, home health provider or other service provider and to assume responsibility for any additional costs from such choices
  • Request to relocate or refuse to relocate within the facility based upon your needs, desires and availability of such options
  • Free exercise of religion and to participate or refuse to participate in religious, social, recreational, rehabilitative, political or community activities
  • Be free of chemical and physical restraints
  • Be free of abuse, neglect, financial exploitation or to refuse to perform labor
  • Confidentiality of your medical, financial or other records

The facility can release your records only with your written consent or that of your representative and must specify the circumstances under which your record may be released, except as specified by law.

Resident's Rights Guaranteed By Illinois Statutes

As a resident, you have the following additional rights provided by statute:

  • Privacy in financial and personal affairs
  • Review and copy your personal files that the facility maintains, during normal business hours or at a time agreed upon between you and the facility
  • Privacy with regard to mail, phone calls and visitors
  • Uncensored access to the State Ombudsman or designee, and the right to refuse access to a State Ombudsman or IDPH reviewer
  • Be free of retaliation for or constraint from criticizing the facility or making complaints to any agency or individual
  • 24 hour access to the building and all common areas of the building
  • A minimum of 30-day notice of any change in a fee or charge or the availability of a service
  • To a minimum of 90-day notice of a planned facility closure
  • A minimum of 30-day notice of an involuntary residency termination, except where you pose a threat to yourself or others or in other emergency situations, and the right to appeal such termination
  • A 30-day notice of late payment and at least 15 days right to pay it

The State Ombudsmen work for the Illinois Department on Aging. Their purpose is to advocate on behalf of senior residents. The State Ombudsmen will only act with the senior's permission.

Prevention and Reporting of Abuse, Neglect, and Financial Exploitation

When the facility reasonably believes that you have been a victim of abuse, neglect or financial exploitation, the facility must remove the perpetrator (if an employee or volunteer) from direct contact with residents.

In addition, the facility must:

  • Notify IDPH within 24 hours after receiving the allegation, by contacting the Assisted Living Complaint Registry, and keep documentation of this report for 12 months; and 
  • Conduct its own investigation, prepare a written report within 14 days after initially reporting to IDPH, send that report to IDPH within 24 hours after it is completed and keep documentation of this report for 12 months.

When the facility investigates, its report must contain at least the following:

  • Dates, times and description of the alleged abuse, neglect or financial exploitation;
  • Description of any injury to you or of any change in your condition;
  • Any actions that the facility has taken;
  • A list of individuals and agencies that the facility interviewed or notified;
  • Names of witnesses to the alleged abuse, neglect or financial exploitation; and
  • If the abuse, neglect or financial exploitation is substantial, a description of the action that the facility will take to prevent it happening again.

Right to a Representative

You may designate a representative through the Illinois Power of Attorney Act or through the guardianship process under the Probate Act of 1975. In the alternative, if you are deemed competent, you can sign a special IDPH form for the designation of a representative. Both the facility and IDPH must recognize the authority of your representative, your legally appointed guardian, your agent designated by a Power of Attorney for Health Care or a surrogate decision maker appointed in accordance with the Health Care Surrogate Act (See Chapter 3 of this Handbook). If you are not able to communicate your own needs in any manner, your representative must live in the facility and have a prior relationship to you.

The Resident Contract

Contract Rights and Terms

A contract between you and the facility must be titled: “assisted living establishment contract” or “shared housing establishment contract,” as applicable. It must be printed in no less than 12 point type. You or your representative are entitled to a copy of the contract, and the facility must keep an extra copy on the premises throughout the duration of your stay.

The contract must include the following contents either in the contract itself or through supporting documents or attachments:

  • The name, street address and mailing address of the facility
  • The name and mailing address of the owner(s) of the facility and the type of business entity of the owner(s)
  • The name and mailing address of the managing agent, if different from the owner
  • The name and address of someone who is authorized to accept service of process on behalf of the owners and managing agent
  • A statement describing the license status of the facility and the license status of all providers of health-related or supportive services that you will be receiving
  • The duration of the contract
  • The base rate you will pay and a description of the services you will be receiving as part of this rate
  • A description of any additional services that will cost an additional fee, and a fee schedule outline the cost of those services
  • A description of the ways you and the facility can modify, amend or terminate the contract
  • A description of the facility’s complaint resolution process and a notice that you can call the Department on Aging’s Senior Helpline and the Long-Term Care Ombudsman Program for assistance with complaint resolutions
  • The name of your designated representative, if any
  • Your obligations in order to maintain residency and receive services, including compliance with all required assessments
  • The billing and payment procedures
  • Your right to receive services from service providers with whom the facility does not have a contractual arrangement
  • A statement that medical assistance under the Illinois Public Aid Code is not available for payment for services
  • A statement detailing the admission and residency termination criteria
  • A statement indicating that the facility maintains a risk management process
  • A statement listing all resident rights as specified above and acknowledging that those rights cannot be forfeited
  • A statement from IDPH detailing their annual on-site review process, including what documents contained in your personal file will be reviewed by the on-site reviewer

In addition, the contract must include:

  • Terms of occupancy, including your responsibilities and obligations
  • The amount and purpose of any fee, charge and deposit, including any fee or charge for any days you are absent
  • The facility’s policy for refunding fees, charges or deposits
  • The facility’s responsibility to provide at least 30 days written notice before the effective date of any change in a fee or charge (unless fees are increasing due to a change in your service needs)
  • The facility’s policy concerning notification of a relative or other individual in an emergency, or when there has been a significant change in your condition, or a termination of your residency

Once you have a contract, it is automatically renewed from year to year, unless properly terminated. Any modifications to the contract must be in writing and signed by both parties. However, the contract may be terminated immediately at any time upon agreement of the parties.

Negotiated Risk Agreements

Under certain circumstances, the facility may want you or your representative to sign a “negotiated risk agreement.” A "negotiated risk" is broadly defined as an agreement between a resident and an assisted living facility regarding the services that the resident requires and the risks that the resident is willing to take.

1. The facility can notify a resident unsteady on her feet of the dangers involved in wearing high heel shoes or in exploring the neighborhood, and the resident can nonetheless choose to accept the risk.

2. The resident chooses to accept the risk of not taking certain recommended medication or treatment.

3. The diabetic chooses to accept the risk of eating chocolate cake.

The agreement must describe the following:

  • The problem, issue or service that is the subject of the agreement;
  • The choices available to the resident, as well as the major risks and consequences associated with each choice;
  • The resulting agreement;
  • Your responsibilities and those of the facility and any other involved individual; and
  • A time frame for review.

The facility must also sign the agreement. Such agreements must be limited to your individual care and personal environment, and cannot waive any of your resident rights, as discussed above.

The negotiated risk agreement may be negotiated or renegotiated at any time during your stay in the facility. When a physician’s assessment is conducted as discussed above, all current negotiated risk agreements must be renegotiated as necessary. Any agreement may result in a reevaluation of the service delivery plan.

Advocates have noted problems with these agreements, in that:

  • By telling you that you assume the risk, the facility is setting a standard of care that admittedly does not meet your needs, and
  • The facility is insulated from liability for any injury that may be caused by the inadequate level of care.

Negotiated risk agreements release facilities from liability in carrying out their responsibilities to provide adequate care. You may not get any real benefit from the agreement. These agreements may be illegal or unenforceable under existing law. If you are forced to enter into one, you should always ask that someone knowledgeable about such matters, such as an attorney or the Ombudsman (or designee) be present when you discuss the terms of the Agreement.

Termination of Residency

Voluntary Termination

Under the following circumstances, you or your representative may terminate residency immediately after notice to the facility:

  • If you have suffered any neglect, abuse or financial exploitation, or
  • If the facility has caused you imminent danger of life, health or safety. If you should die, the lease agreement terminates as soon as your possessions are removed.

Otherwise, you or your representative can terminate residency by providing 30 day’s written notice to the facility.

Reasons for Involuntary Termination

A facility can terminate your residency only for the following reasons:

  • Failure

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