In Illinois regulations, “assisted living establishments” (ALEs) provide full-time care mostly for elderly people with medical issues which can include dementia. Legally, an ALE houses at least three adults over 55 years old who are not related and need help with activities of daily living (ADLs) including washing, eating, and walking from room to room. Staff is available 24 hours per day.
Illinois also has “shared housing establishments” which have 16 or fewer residents at a time, most 55 or older, who need assistance with ADLs. Shared housing establishments also provide 24-hour care. A difference between assisted living and shared housing is that assisted living residents have private, one-person apartments (unless the resident chooses to have a roommate, in which case maximum occupancy per room is two people) while there may be more than one or two people to a room in shared housing. Shared housing is also called “board and care homes.”
Both types of residences may house persons with Alzheimer’s disease or a related dementia if specific rules are met by management. These types of homes are often called “memory care,” “Alzheimer’s care,” or “dementia care” and must do the following:
– Register its Alzheimer’s program with the Illinois Department of Public Health
– Designate a representative for each resident
– Ensure safety for those who wander or need supervision, and can help during an evacuation
– Enable communication between the resident, a representative, family members, and anyone else (like a doctor) designated in the resident’s service plan
– Provide stimulating and appropriate activities to encourage brain health
– Provide a minimum of 1.4 hours of service per resident per day
The state requires all assisted living homes to provide the following: three meals per day, housekeeping, laundry, security, and an emergency communication response system. Another rule is that every resident must have a doctor’s assessment within 120 days of moving in, and must be reevaluated by a doctor at least annually.
Assisted living establishments and shared housing establishments in Illinois are regulated by the Department of Public Health, Division of Assisted Living.
The average cost of memory care per month in Illinois is $4,980 or $59,760 annually. Pricing varies widely depending where you live. The most expensive areas for memory care, on average, are the Chicago area (Cook County) and Rockford, which run about $5,670 per month and $68,040 annually. Keep in mind that there is a wide range of prices within these areas; Cook County has more than five million people, and it might be possible to find assisted living with memory care for costs between anywhere from $2,000 per month to more than $10,000. Get help finding affordable care here.
The least expensive place for memory care is Carbondale in southern Illinois, where costs are about $4,180 per month and $50,160 annually. People looking for memory care in western and southern Illinois might want to go across the state border into Missouri and Kentucky, which both have less expensive (on average) memory care. Missouri is one of the least expensive states in the entire country for memory care, with average rates of about $3,450 per month and $41,400 annually.
|Illinois Memory Care / Assisted Living Costs (updated Nov. 2020)|
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An individual moving into memory care in Illinois needs a physician’s assessment completed within 120 days. This is a doctor’s evaluation of a person’s “physical, cognitive, and psychosocial condition,” which basically means they want to know how strong your loved one is physically and mentally, and how easy or difficult it is to relate to others and function within the residence. A doctor must also affirm that your loved one has no contagious infection (specifically tuberculosis). Residences are given freedom by the state to create their own admissions standards, so long as they address the above general requirements.
The evaluation is usually done by a medical professional who works for the residence, and the cost of evaluating may be covered by a “community” or “move-in” fee that would also include things like deep cleaning and painting the living unit, or other costs to prepare for a new resident. Some residences don’t charge anything for an assessment, while others require it be completed by an outside doctor (which would mean paying for it is up to the resident). It’s very important to ask the home what their policy is for admissions, including the assessment.
Someone cannot be accepted as a resident in assisted living, memory care, or shared housing for these reasons:
– the desired residence cannot assure the proper level of care for the specific resident, or isn’t licensed to fit the person’s medical needs
– the staffing levels are not appropriately high to add a new resident
– the new resident is dangerous
– the new resident needs total help with more than two activities of daily living
Residents may not receive full-time medical care in assisted living. Limited, or “intermittent,” care is allowed, however, and third-party medical professionals are allowed to enter residences to help patients. If your loved one needs to be under the care of an outside doctor on a consistent basis, you need to be clear on whether that care can be provided before moving in.
Moving into memory care on short notice is possible, but it’s better to begin the process as early as possible after a diagnosis (though an official dementia diagnosis is not required to move into memory care, which is more about helping with symptoms than any specific disease). Your loved one will be able to provide more input the sooner you start scouting locations.
Assisted living (including assisted living with memory care) is required to provide single-person rooms to all residents except those who choose to be with a roommate. The maximum number of people per room in assisted living is two. In “shared housing”, there is no rule about how many residents are allowed per room. Also noteworthy is that there is no square footage requirement in Illinois regulations for rooms, so inspect where your loved one would live if you are considering a certain residence, to make sure the rooms are big enough to fill your needs. Every room in assisted living must have a private bathroom with a toilet, sink, ventilation or window, and any equipment upgrades detailed in the resident’s service plan. You’ll also want to be sure the design is dementia-friendly, meaning the layout is easy to navigate and hallways don’t run into dead ends. Outdoor space is also ideal for people with dementia, but not required in regulations.
Regulations on staff-to-resident ratios are vague, saying only that Illinois assisted living homes must have “an appropriate number of staff for its resident population.” At least one member of the staff must be awake and on duty at all times, and that person must have CPR training.
An ongoing training program is required in all Illinois assisted-living residences. Multiple orientations are required for every employee within 30 days of beginning work in a residence, outlining specifics like residents’ rights, abuse prevention, reporting requirements, and training to deal with activities of daily living (ADLs) appropriate to the needs of residents.
Managers must be at least 21 years old, and complete eight hours of training every year in these areas: “promoting resident dignity, independence, self-determination, privacy, choice, and resident rights”; procedures in case of disaster; hygiene and infection control; medication management (assisting residents with self-administering); abuse and neglect prevention; reporting requirements; and assisting residents with ADLs.
Memory care requires staff training beyond what’s listed above. For residences who house people with Alzheimer’s or related dementia, managers or supervisors must have a college degree including coursework specific to dementia, one year of hands-on experience working with people with dementia, and two years of management experience working with people with dementia. Six hours of specifically dementia-related training is required annually.
For memory-care staff, the following is required: four hours of dementia-specific training before beginning the job, including techniques to minimize disruptive behavior, communicate, and identify safety risks for someone with Alzheimer’s. Memory-care staff must also have 16 hours of on-the-job training and orientation covering assistance with ADLs, how to evacuate people with dementia in case of emergency, minimizing challenging behavior, how to work with families and cope with caregiver stress, and communicating with someone with dementia. Twelve hours of dementia-specific training is required for memory-care staff annually.
There are no rules in regulations that say a person must be given advance notice before being evicted for nonpayment, inappropriate behavior, or another reason. Therefore, it is very important to be clear on exactly why a person can be evicted, and how that process works, before moving into an assisted living home. For more on memory care evictions, click here.
Medicaid is a jointly funded federal and state program, and in Illinois the program that helps pay for care in an assisted living environment is the Illinois Supportive Living Program (SLP). In the past, this was known as Home and Community-Based Services (HCBS) Supportive Living Program waiver. To be a part of the program, your loved one must be accepted to reside in an assisted living facility that works with the program, and must take part in preadmission screening. SLP will cover the cost of services in assisted living (laundry, meals, security, transportation, etc.), and provide a $90-per-month personal allowance. The resident will still need to pay toward room and board. A residence must be approved by the state to be part of the program and your loved one can only apply for SLP help if he or she has income equal to more than the Supplemental Security Income monthly benefit of $771. More on Medicaid.
This state program sends care coordinators to evaluate Illinois residents over 60 and determine what needs (including help with activities of daily living) must be met and whether there is a progressive medical issue like dementia that would require placement in assisted living. Coordinators assess what the best living options are for your loved one, whether that be staying at home or moving into assisted living, memory care, or a nursing facility. Choices for Care also works with families to identify financial assistance (like the Supportive Living Program below) a person is eligible to receive. Screening consultations are free. For more information, find Care Coordination Services in your area here, or visit the Choices for Care program page.
Veterans are statistically more likely to develop dementia and should absolutely find out what financial assistance they are eligible for. Relevant in all states including Illinois is the VA’s Aid & Attendance pension program for veterans and surviving spouses, which is an amount of money added to veterans’ and survivors’ basic pension. Applicants must be at least 65 years old (or disabled) and require assistance with activities of daily living (ADLs) like eating, bathing, and mobility. The cash assistance from these pensions can be used as the recipient wishes, meaning it can go toward the cost of memory care. In addition, the cost of residential care can be deducted from one’s income, effectively reducing the amount of calculable income used to determine the benefit amount. The latest (2021) maximum amount a veteran can receive through A&A is $27,540 per year, and surviving spouses can receive as much as $14,928. Learn more here.
Veterans’ homes are residential care facilities that provide long-term care for veterans. In addition to nursing home care, assisted living and memory care may be provided. There are also four veterans’ homes in Illinois. These are in Anna (southern Illinois), Lasalle (north-central), Manteno (northeastern, about an hour outside Chicago), and Quincy (western, near the Missouri border). Payment is made directly from the VA to the facility. State veterans’ homes are typically reserved for veterans whose need for care stems at least 70 percent from their military service. Because there is often a waiting list, contact a home before visiting to see if your loved one is eligible to live there.
Other ways to help pay for assisted living with memory care include tax credits and deductions like the Credit for the Elderly and the Disabled (click here), or the Child and Dependent Care Credit (click here) if you can claim your elderly loved one as a dependent. Remember also that medical and dental expenses can be deducted, and that may include some assisted living costs (click here).
A reverse mortgage may be a good option for a married person moving into memory care, if their spouse continues to live in the home. Should their spouse move from their home, the reverse mortgage would become due.
Elder care loans are for families to cover initial costs of moving into memory care, if you need a little help at first but can afford costs after the initial payments. For example, if one is waiting for a VA pension to be approved or waiting to sell a home.