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Caregiving

How to obtain a caregiver and how to become one

Rebecca Schleuning

BSW Intern

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Objectives

1. You can understand the effects of:

Lack of access to a caregiver
Unpaid caregiving
Prevalence of the prior two issues.

2. You understand the process of accessing a caregiver.

3. You understand the process of becoming a caregiver for a friend or relative.

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Table of contents

01

03

02

04

Through Care Horizon agencies and PACE

Lack of access to caregiving, unpaid caregiving, and the prevalence of both

Through PACE, CARE Horizon, Family Services, an Cris health aging

A short evaluation to understand how to improve this training.

Understanding the Effects

Accessing a caregiver

Becoming a caregiver

Questions and the evaluation

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Handouts

01

02

03

04

Agenda

CRIS Health Aging Handout

Main Agencies

Mini-Mental Exam

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Disclaimer

The process to access free caregiving resources varies greatly for individuals with disabilities and older adults who need medical home care. The Illinois Community Care program solely provides non-medical in-home care. For individuals with disabilities it is recommended to reach out to PACE or DRS for more information. For older adults who need in-home MEDICAL care, it is recommended to receive services and referrals through a physician or medical professional.

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A few definitions.

Caregivers are anyone who provides care or assistance to someone who is unable fully take care of themselves. Caregiving is the act of caring/assisting.

The National Institute on Aging defines older adults as individuals

65+

Older adults

Caregiving

Or Caregivers

Helps older adults who might otherwise need nursing home care to remain in their homes by providing in-home and community-based services.

Illinois Community Care Program

Older adults are defined by most agencies and organizations as being over 65 years old, but some programs, like the Community Care Program have different ages that they use. The Community Care Program applies to individual 60 years of age and older. Caregivers/Caregiving is a very broad term. It means anyone who provides care or assistance to someone unable to fully take care of themselves. Lastly, Illinois Department on Aging’s Community Care Program helps older adults who might otherwise need nursing home care to remain in their homes by providing in-home and community-based services.These services include comprehensive care coordination (which we will hit on slightly), adult day services, in-home services (like Caregiving), emergency home response services, and automated medication dispenser service.

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Understanding the effects

01

More than 2 million adults in Illinois provide care to a family or friend in need.

AARP & National Alliance of Caregiving, 2025

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Lack of access to a caregiver

Social isolation in older adults comes with many risks. For individuals who are unable to care for themselves, these risks are compounded.

Self neglect including lack of hygiene, nutrition and medical and financial neglect.
Anxiety and Depression
Increased risk of heart disease, cognitive decline, and Alzheimers

AOA & ACL, 2018

What happens for older adults and individuals with disabilities when they lack access to a caregiver? The consequences are what you might expect and more. Social Isolation is already common in older adults. The Administration on Aging found that about 28% of older adults in the U.S. experience social isolation. For individuals who are unable to care for themselves, the risks of social isolation are compounded. The National Institute on Aging find the following to be common impacts. Self neglect which can consist of poor hygiene, nutrition deficits, and medical and financial neglect. Medical neglect can consist of not taking medications or not seeing a doctor for health issues. Financial neglect would be allowing bills to pile up or missing rent payment. Increased risk of poor mental health such as anxiety and depression.are also common among older adults who lack caregivers. On top of it all is increased health risk and higher mortality rates for older adults who live without care and are isolated.

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Unpaid Caregiving

47% of caregivers experience at least one negative financial impact due to caregiving

1 out of 4 caregivers experience 7+ days a month of poor physical health
40% experience high emotional stress
27% feel alone while caregiving

Unpaid caregivers often sacrifice their leisure time, incur risks of roping out of a job, impaired mental and physical health, and decreased well-being due to caregiving.

AARP & National Alliance of Caregiving, 2025

Unpaid caregiving has negative effects on both the caregiver and the older adult or individual receiving care. In the study by the AARP and the National Alliance for Caregiving, they found that 47% of caregivers experience at least one negative financial impact due to caregiving. But financial impacts are only the tip of the iceberg. The same study found that one in four family caregivers experience seven or more days a month of poor physical health. Four in ten caregivers (40%) experience high emotional stress while caregiving. One quarter (24%) have difficulty taking care of their own health while they focus on their care recipient’s needs. Nearly three in ten (27%) feel alone

while caregiving. Unpaid caregivers often sacrifice their leisure time, incur risks of dropping out of a job, impaired mental and physical health, and decreased well-being due to caregiving. While being paid as a caregiver helps mitigate the negative effects associated with unpaid caregiving, caregiving in general still has physical and emotional impacts. It’s important to keep this in mind so we can refer our clients to a multitude of caregiving resources.

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Prevalence

23% of adults in the state of Illinois, provide care to a family member or friend. (AARP, National Alliance for Caregiving)

Caregiving in general

About 20 percent of older adults report receiving no help despite having difficulty with self-care, mobility, or household activities (National Health and Aging Trends Study, 2016)

Lack of access to caregiving

Only about 5 million of 63 million caregivers are paid in the U.S. reports John Hopkins University (Coulson, 2025).

Unpaid Caregiving

20%

92%

23%

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Accessing a Caregiver

02

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These are the main agencies or groups of agencies who can help gain access to a caregiver

This option is best for individuals with disabilities, both who have and don;t have income. PACE will help them work with DRS.

This organization is the best place for low-income individuals to start their journey to getting a caregiver.

PACE

Care Horizon

Family Services has services for caregiving as well as a multitude of other services, many of them free. We’ll go over some other agencies which provide similar services.

Family Services and other agencies

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PACE

Personal Assistance - PACE trained individuals who can provide in-home care for activities of daily living

Their PA program gives the client control over their care.

To obtain a PA, you must contact PACE and inquire about their PA program. PACE will then put clients in touch with PAs and the client can then interview them.

(PACE, 2020)

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Eligibility:

60 years old or older
U.S. citizens or eligible non-citizens within the specific categories
Residents of Illinois
Have non-exempt assets of $17,500 or less
Have an assessed need for long-term care
Lastly apply for and, if eligible, enroll in Medicaid

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Illinois Community Care program

CARE Horizon

Medicaid

The first step is to apply for medicaid.

Contact

CARE Horizon

They will check that the individual qualifies for the program and set up an appointment for the assessment.

Assessment

A caseworker will come to assess the needs of the client and create a care plan via the DON.

Assigning a Caregiver

Once the assessment is complete, CARE Horizon will connect the client with one of several agencies that provide caregivers.

The first step in receiving care through the community care program is to ensure eligibility and to apply for Medicaid. This step can be done by the client on their own, or they can first get in contact with Care Horizon who can help them through the process. Either way, the client will need to get into contact with CARE Horizon to go through eligibility requirements and set up an appointment for a casework to go out to the home and give the client a Determination of Needs Assessment.

The determination of need or DON Assessment consists of two parts. The first is the Mini-Mental State Examination which is a short– hence the mini– evaluation of the cognitive functioning of the participant. 21+ is cognitively intact, 20- means they are cognitively impaired and points will be added to part A of the second part of the DON. The second part of the DON is to assess the participants ability to perform activities of daily living like eating, bathing, and incontinence. And Instrumental activities of daily living like preparing meals, managing money, laundry, housework, etc. The DON has the caseworker go through and rate from 1 to 3 each aspect. The higher the number of points the higher the level of impairment. This level of impairment then helps shape the Care Pan which the caseworker will help the participant work through.

Once the Care plan has been created and approved, then the client can receive a Caregiver.Care Horizon refers out to many different agencies in the community. At this point in time is when the client would need to express their wishes to hire a family member as their Caregiver. Care Horizon SHOULD know which agencies will allow this and which don’t. They should also help the client work through which agencies will take the insurance that they have. The client will then work with the specific agency on arranging hours the Caregiver will come, helping with transportation to and from appointments, etc.

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Family Services

Family services is one of the agencies that CARE Horizon will refer clients to. They also have low-rates for individuals whom do not use the state program.

Caregivers are trained and vetted by Family Services to provide non-medical in-home care through their HomeCare program. They DON’T allow Caregivers to apply to care for a specific individual.

They also provide: Medicaid application help, meals on wheels, creativity on wheels program, senior centers, aging navigators, and more!

(Family Service, 2026)

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Addus HomeCare

Addus HomeCare program called In-Home Care is very similar to that of Family Service Home Care program. They train caregivers in daily activities (non-medical only) and policies which clients may need help with.

Addus is also able to provide Home Medical Care through a different program. Thus, they can work with clients who need both types of services to streamline their care.

Addus HomeCare also allows individuals to apply to be a caregiver for a specific individual.

(Addus HomeCare, 2026)

Addus HomeCare also works with CARE Horizon to connect clients with caregivers. Addus HomeCare program called In-Home Care is very similar to that of Family Services Home Care program. They train caregivers in daily activities (non-medical only) and policies which clients may need help with.

Addus is also able to provide Home Medical Care through a different program. Thus, they can work with clients who need both types of services to streamline their care.

Addus HomeCare also allows individuals to apply to be a caregiver for a specific individual.

Though I am using Addus in this presentation, mainly, as an example of one of many agencies that works with Care Horizon. There may be other organizations, possibly even better ones, which also allow other family members to act as Caregivers. Addus and Family Service were simply the only one I was able to contact easily about this.There are list of other agencies are on the back page, at the bottom, of the Main Agencies handout.

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CRIS Healthy Aging

CRIS Healthy Aging is an organization much like Family Services. Although, CRIS Healthy Aging is considered the one-stop-shop for any aging related questions.

While they don’t have all the resources, CRIS has a wide referral network and is able to connect individuals to the services they need. This network is also utilized through their Care Coordination Unit in which a caseworker helps to manage their care as well as connect low-income clients to subsidized services.

CRIS also has a great support program for Caregivers called the Caregiver Advisory Program.

(CRIS Healthy Aging, 2026)

CRIS Healthy Aging currently holds the Senior Information Services contract and is the designated Single Point of Entry for all aging related questions in Champaign. Cris healthy aging is the first place to go to for any non-Caregiving related services. If they don’t provide the service, they will know who does in the community as they have a very wide referral network. This network is also utilized through their Care Coordination Program in which a caseworker can help advocate and manage an older adult’s care. Since many organizations do many different things, it can be a lot to handle, so CRIS helps older adults with this through their Care Coordination Program. CRIS also has support programs for Caregivers called the Caregiver Advisory Program. This program helps connect Caregivers to community supports and hosts support groups. This is the highlighted in the flyer your each have from CRIS.

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Questions?

?

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Becoming a Caregiver

03

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Becoming a Caregiver for an individual using the CCP

Approved

The first step is for the individual whom you wish to caregiver for, to be approved for a Caregiver

Contact the agency

Agencies similar to Addus HomeCare allow for family members to apply to be a specific individual’s caregiver.

Orientation

Once you contact the agency, make sure you have all required documentation and attend their trainings and orientation.

Caregiver and connect to resources

Once the orientation is complete, they will have all the information they need to begin caregiving. Be sure to connect clients with caregiver support services.

To become a caregiver for an individual in the CCP (Communit Care Program) you should first wait until the recipient of care has been approved for services after the DON Assesment. After that occurs, they will then be referred to a home care agency. The recipient should let Care Horizon and the home care agency that they would like to hire a relative or friend as a caregiver. There are some agencies that allow this and some that don’t so it is important to make it clear when talking to Care Horizon and the home care agency. Then the relative or friend should call the home care agency the recipient was referred to, and let them know of their intnet to apply to be a family caregiver for a specific individual. They should then apply to the agency via their application process (online, indeed, etc) After that, they will go through orientation and training (as long as they meet the requirements covered in the next slide). Then they will work with the recipient and agency to provide care for the older adult. The individual can only be paid for the hours that the Care Plan outlines. It is important to refer the caregiver to supportive services and express understanding that caregiving is a HARD job. Their health can impact the quality of caregiving as well as their relationship with the older adult.

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Requirements to be a Caregiver

Different organizations have different requirements.

Most follow these:

Complete an application for the agency to which the older adult applied for Caregiving from.

Have necessary work documentation (ID, Social Security Card, Birth Certificate, Passport Automotive insurance)

Pass a background check. (Flagged for felonies, sexx offenses, abuse, and/or neglect.)

Attend orientation and trainings. (Spans from 10-24 hours of training depending on the agency.)

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PACE

Personal Assistant or Personal Support Workers are trained through PACE. To be put on the registry of PA/PSWs you should contact PACE and express interest in attending the next training. The trainings occur regularly, at least once every quarter.

The requirements are:

age 18 or older

complete the required orientation and pass the post-orientation quiz

pass the following background checks:Healthcare Registry, Illinois Sex Offender Registry, National Sex Offender Registry, DCFS Child Abuse and Neglect Tracking System (CANTS) check

(PACE, 2020)

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Questions & Evaluation

04

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Frequently Asked Questions

What is the capacity of the organizations involved?

CRIS Healthy Aging Care Coordination: They currently don’t have the contract for Champaign and thus don’t provide this service for Champaign County right now only Vermillion County. Care Horizon currently has the contract for Champaign County and provides those services.

Care Horizon: Open to take new clients currently but up to a 2 week wait from intake & referral to case manager for the case manager to reach out.

Family Service of Champaign County: No waitlist & open to take new clients.

Who regulates in-home caregiving?

The Illinois Department of Public Health licenses home services and home nursing agencies to ensure compliance with health and safety standards and does an inspection of programs every year.

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How to motivate clients to accept help?

There are many great articles out there on how to convince loved ones or relatives to receive care. They provide great insight, despite being geared towards friend or relatives. Linked here is an article that might help you form an approach to your conversation with an older adult.

What is the cost of care for those not eligible for the CCP?

$20 to $30 an hour if they are paying straight out of pocket (no insurance, waivers, or other programs).

What is the timeline for each part of the process?

2-6 weeks for the whole process. Up to 2 weeks to receive an appointment after a referral is made to Care Horizon. Up to another 2 weeks for an appointment with the case managers to be completed. Up to 2 weeks for care to start when referral is made from case manager to an in-home care agency.

Maximum hours a caregiver can be assigned?

Hours are assigned on an as-needed basis with the maximum being 40 hours a week of care.

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What resources are there for individuals with disabilities & individuals with medical care needs?

For individuals with disabilities the process is very similar to that with older adults. The biggest difference is there's two different paths for individuals with physical disabilities and individuals with intellectual and developmental disabilities. Either way they should go through the Illinois Department of Rehabilitation Services (DRS) for both programs. PACE is also a great resource to answer any questions and help clients work through the process.

For individuals with medical care needs, both Medicare and Medicaid provide different forms of coverage for older adults. Private insurance might also cover in-home medical care. The best path for individuals with high medical needs would be to talk to a primary care physician about their options. You can learn some more about it here: https://www.uhc.com/communityplan/medicaid/benefits/home-health-care

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Can a Power of Attorney be a caregiver?

Yes, a POA can be a caregiver, but there may be additional process and documentation needed with the state to ensure there isn’t a conflict of interest or an opportunity for neglect/abuse to occur.

Are there background checks on individual receiving care?

No. Generally, IDHS and home care agencies are focused on ensuring safety of their clients and preventing elder abuse or neglect.

Is there caregiving available for unhoused individuals?

Unfortunately not. And as we know, there are limited resources in Champaing-Urbana for unhoused older adults.

What is the number of unpaid caregivers estimated to be eligible for funding? AND how do statistics vary between caregiving categories?

There are limited reports and limited statistics on unpaid caregiving, so unfortunately this is unknown.

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Sources

AARP, & National Alliance for Caregiving. (2025). Caregiving in the US: Illinois. Caregiving in the US 2025: Caring Across States. https://doi.org/10.26419/ppi.00383.009

Addus HomeCare. (2026). Addus Homecare | in Home Care, Home Health & Hospice Care Agency. We’re Here to Help You Maintain Your Health And Independence. https://addus.com/

AOA, & ACL. (2018). (rep.). 2017 Profile of Older Americans. https://acl.gov/sites/default/files/Aging%20and%20Disability%20in%20America/2017OlderAmericansProfile.pdf.

Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US); 2016 Nov 8. 2, Older Adults Who Need Caregiving and the Family Caregivers Who Help Them. Available from: https://www.ncbi.nlm.nih.gov/books/NBK396397/

Coulson, M. (2025, July). What is the caregiver crisis? | johns hopkins | Bloomberg School of Public Health. Public Health on Call. https://publichealth.jhu.edu/2025/what-is-the-caregiver-crisis

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Sources

CRIS Healthy Aging. (2026). Caregiver Advisory Program. Champaign, IL. Retrieved from https://agestrong.org/caregiver-advisory-program/.

CRIS Healthy Aging. (2026, April 10). Cris healthy aging of Vermilion and Champaign County. https://agestrong.org/

Family Service. (2026). HomeCare. Family Service of Champaign County. https://www.famservcc.org/homecare

IDOA. (2026). Support for caregivers. Illinois Department on Aging. https://ilaging.illinois.gov/programs/caregiver.html

Illinois family caregiver coalition. Illinois Family Caregiver Coalition. (n.d.). https://illinoisfamilycaregiver.org/

IRC. (2026). Illinois Resoite Coalition. Illinois Respite Coalition. https://www.illinoisrespitecoalition.org/

NIA. (2019, April). Social isolation, loneliness in older people pose health risks | National Institute on Aging. National Institute On Aging. https://www.nia.nih.gov/news/social-isolation-loneliness-older-people-pose-health-risks

PACE. (2020, December 4). About Us. PACE, Inc. Center for Independent Living . https://pacecil.org/about-us/

Persons with disabilities. HFS Illinois Department of Healthcare and Family Services. (n.d.). https://hfs.illinois.gov/medicalclients/hcbs/disablities.html

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