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Illinois Community Care Program: How Family Caregivers Get Paid Through CCP · Home Care Powered By AUAF

• 0:00
  SPEAKER_00: Welcome to the Home Care Podcast.
• 0:01
  SPEAKER_01: Oh, we've got a really good one today.
• 0:03
  SPEAKER_00: Aaron Ross Powell We really do.
• 0:04
  SPEAKER_00: Because, you know, what if I told you that one of the most, well, the most demanding jobs in Illinois is one you might already be doing for totally free.
• 0:13
  SPEAKER_01: Yeah, which is just wild to think about.
• 0:15
  SPEAKER_00: Right.
• 0:15
  SPEAKER_00: I want you to just picture the reality of caring for an aging relative.
• 0:19
  SPEAKER_00: You know?
• 0:20
  SPEAKER_00: The drill I mean, the medication management at like six in the morning, the complex meal prep, the the physical toll of helping someone in and out of the shower.
• 0:30
  SPEAKER_01: Oh, it's exhausting.
• 0:31
  SPEAKER_00: It is exhausting.
• 0:32
  SPEAKER_00: And it's largely invisible labor.
• 0:33
  SPEAKER_00: You know, it just happens behind closed doors.
• 0:36
  SPEAKER_00: But imagine if the state actually recognized all that immense time and energy and compensated you for it with a formal paycheck.
• 0:43
  SPEAKER_01: Aaron Powell Yeah, because we were looking at this fundamental rewiring of how society values family labor.
• 0:50
  SPEAKER_00: Aaron Powell Exactly.
• 0:52
  SPEAKER_01: For decades, the assumption has simply been that, well, family takes care of family, end of story.
• 0:56
  SPEAKER_01: The physical and financial sacrifices were just, you know, they were considered part of the deal.
• 1:00
  SPEAKER_00: Just something you do.
• 1:01
  SPEAKER_01: Right.
• 1:02
  SPEAKER_01: But the actual data shows that this informal system pushes families to the absolute brink, like both emotionally and economically.
• 1:09
  SPEAKER_00: Aaron Powell, which brings us to the exact mission of our deep dive today.
• 1:13
  SPEAKER_00: We are going straight into the mechanics of the Illinois Community Care Program, the CCP.
• 1:18
  SPEAKER_00: We want to really cut through the confusing state bureaucracy and figure out exactly how family caregivers in Illinois can get paid through this program.
• 1:26
  SPEAKER_01: Navigating state-level healthcare bureaucracy can literally feel like learning a foreign language.
• 1:31
  SPEAKER_00: Oh, 100%.
• 1:32
  SPEAKER_01: But understanding the specific levers of this program is it's the difference between struggling in silence and getting substantial funded support.
• 1:41
  SPEAKER_00: And to guide us, we have a stack of helpful notes today.
• 1:44
  SPEAKER_00: We've got a comprehensive breakdown of the CCP from a September 2026 article by Rana Botani.
• 1:49
  SPEAKER_00: And because, you know, theory is only helpful if you see how it works, we're pairing that with specific background information on a really prominent local agency, home care, powered by AUAF, to help illustrate how this looks in the real world.
• 2:02
  SPEAKER_01: Yeah, pairing those sources is vital.
• 2:04
  SPEAKER_01: I mean, the the state creates the funding mechanism.
• 2:06
  SPEAKER_01: Right.
• 2:07
  SPEAKER_01: But the home care agencies are the actual engines putting the money into the caregiver's pocket.
• 2:13
  SPEAKER_00: Yeah.
• 2:13
  SPEAKER_01: You cannot fully understand one without the other.
• 2:16
  SPEAKER_00: Exactly.
• 2:16
  SPEAKER_00: But before getting into the mechanics of how to get paid, you need to know exactly which state program applies to you.
• 2:23
  SPEAKER_00: Because applying for the wrong one is a massive roadblock.
• 2:26
  SPEAKER_00: So, okay, let's unpack this.
• 2:27
  SPEAKER_01: Yeah, it was good.
• 2:28
  SPEAKER_00: We have the Illinois Community Care Program, the CCP, run by the Department on Aging.
• 2:34
  SPEAKER_00: And it's this Medicaid waiver program to help older adults stay in their homes instead of moving to nursing facilities by funding personal care, homemaker help, and assistance with ADL's activities of daily living.
• 2:45
  SPEAKER_01: Right.
• 2:45
  SPEAKER_01: The CCP is for older adults.
• 2:47
  SPEAKER_00: But then you have this other program, the Home Services Program, or HSP, run by the Department of Human Services, which is for adults under 60 with qualifying disabilities.
• 2:55
  SPEAKER_01: Totally different departments.
• 2:57
  SPEAKER_00: Right.
• 2:57
  SPEAKER_00: So navigating these programs is like getting on a train.
• 3:00
  SPEAKER_00: If you get on the HSP train when you actually need the CCP train, you'll end up at the completely wrong destination.
• 3:06
  SPEAKER_00: But I have to ask, why do families so frequently confuse these two distinct programs?
• 3:12
  SPEAKER_01: Aaron Powell What's fascinating here is that the end result, getting help at home looks identical to a stressed family.
• 3:18
  SPEAKER_00: Oh, that makes sense.
• 3:19
  SPEAKER_01: Right.
• 3:20
  SPEAKER_01: Like when you are operating on three hours of sleep because you've been helping your mother up and down all night, you aren't uh you aren't analyzing the organizational chart of Illinois State Departments.
• 3:30
  SPEAKER_01: You just want the caregiver to walk through the door.
• 3:32
  SPEAKER_00: Right.
• 3:32
  SPEAKER_00: You're just Googling Illinois home care and clicking whatever pops up first.
• 3:36
  SPEAKER_01: Exactly.
• 3:37
  SPEAKER_01: But understanding the bureaucratic pipeline, which is based entirely on age and disability, is the crucial first step.
• 3:43
  SPEAKER_01: Because if you send an HSP application for an 85-year-old, the system will just reject it.
• 3:48
  SPEAKER_00: Just flat out rejected.
• 3:49
  SPEAKER_01: Yeah.
• 3:50
  SPEAKER_01: So verifying that the CCP is your correct path based on that 60 and older requirement, that's step one.
• 3:56
  SPEAKER_00: Okay, so say we're on the correct CCP train.
• 3:59
  SPEAKER_00: Who is actually allowed to ride?
• 4:01
  SPEAKER_00: Because before a caregiver sees a single dime, the person receiving the care must pass these strict state qualifications.
• 4:08
  SPEAKER_01: They do.
• 4:09
  SPEAKER_01: There are really three main gateways for the care recipient.
• 4:12
  SPEAKER_01: First, they must be 60 or older.
• 4:14
  SPEAKER_01: Second, they must be an Illinois resident.
• 4:16
  SPEAKER_01: And third, this is the financial one, the senior must have non-exempt assets of$17,500 or less.
• 4:24
  SPEAKER_00: Okay, wait.
• 4:24
  SPEAKER_00: Non-exempt assets of$17,500?
• 4:28
  SPEAKER_00: That sounds incredibly low.
• 4:29
  SPEAKER_00: I mean, if my mom owns her home and has a car, does she just immediately fail that test?
• 4:34
  SPEAKER_01: Not necessarily.
• 4:35
  SPEAKER_01: And this is where understanding the term non-exempt is so relieving for families.
• 4:39
  SPEAKER_00: Oh, thank goodness.
• 4:40
  SPEAKER_01: Yeah, the state recognizes you need a place to live, right?
• 4:43
  SPEAKER_01: You need a way to get around.
• 4:44
  SPEAKER_01: So your primary residence is generally considered an exempt asset.
• 4:47
  SPEAKER_01: It doesn't count toward that$17,500 limit.
• 4:50
  SPEAKER_00: Okay, wow.
• 4:51
  SPEAKER_01: That's huge.
• 4:52
  SPEAKER_01: It is.
• 4:52
  SPEAKER_01: And one vehicle is usually exempt too.
• 4:54
  SPEAKER_01: Personal belongings, furniture, all exempt.
• 4:57
  SPEAKER_01: They're really just looking at liquid assets and investments, checking accounts, savings, CDs, vacation homes, that sort of thing.
• 5:02
  SPEAKER_00: Got it.
• 5:03
  SPEAKER_00: So if those specific liquid assets are under$17,500, you pass the financial hurdle.
• 5:09
  SPEAKER_01: Exactly.
• 5:10
  SPEAKER_01: But then we get to the physical hurdle.
• 5:11
  SPEAKER_00: Right.
• 5:11
  SPEAKER_00: The determination of need assessment.
• 5:13
  SPEAKER_01: Yeah.
• 5:14
  SPEAKER_01: A care coordination unit conducts an in-hom assessment to document the need for assistance with ADLs.
• 5:20
  SPEAKER_01: And that score dictates the approved weekly hours.
• 5:23
  SPEAKER_00: But see, a state worker sitting in a living room with a clipboard, I mean, a determination of need score just sounds like a highly specific grading rubric for human vulnerability.
• 5:32
  SPEAKER_00: How does this assessment ensure it's not just some, you know, one size fits all number of hours given to every senior?
• 5:38
  SPEAKER_01: This raises an important question because families often underestimate or overestimate their loved ones' daily needs.
• 5:45
  SPEAKER_00: Really?
• 5:46
  SPEAKER_00: Like they guess wrong.
• 5:47
  SPEAKER_01: Oh, all the time.
• 5:48
  SPEAKER_01: Guild might make a daughter say, Oh, mom is fine, we just need someone for laundry, when the mother's actually experiencing severe cognitive decline and might wander off.
• 5:56
  SPEAKER_00: Oh, wow.
• 5:57
  SPEAKER_00: I didn't think about that.
• 5:58
  SPEAKER_01: Yeah.
• 5:59
  SPEAKER_01: Or conversely, an exhausted son might think his dad needs 247 nursing care when really he just needs dedicated morning and evening support.
• 6:07
  SPEAKER_01: The professional in-home assessment exists specifically to match the approved hours to the actual daily reality, making it a highly tailored process.
• 6:15
  SPEAKER_00: Okay, so it anchors the reality.
• 6:17
  SPEAKER_00: So let's say the state says, yes, your loved one needs 25 hours of help.
• 6:21
  SPEAKER_00: How does the family member actually step in and become the one getting the paycheck?
• 6:25
  SPEAKER_01: Well, caregivers are not paid by the state directly, and they aren't paid by the family either.
• 6:31
  SPEAKER_01: They're employed by a contracted home care agency.
• 6:34
  SPEAKER_00: Wait, really?
• 6:34
  SPEAKER_00: Not the state?
• 6:35
  SPEAKER_01: No.
• 6:36
  SPEAKER_01: The agency handles the payroll and the tax withholding.
• 6:39
  SPEAKER_01: Caregivers receive a standard W-2 at tax time, establishing formal employment.
• 6:43
  SPEAKER_01: They have to pass a background check and complete required agency training.
• 6:46
  SPEAKER_00: Okay, here's where it gets really interesting because in April 2026, there was a massive update.
• 6:51
  SPEAKER_01: Oh, yes.
• 6:51
  SPEAKER_01: The spouse update.
• 6:53
  SPEAKER_00: Yes.
• 6:53
  SPEAKER_00: Spouses can now often be paid caregivers, along with adult children, relatives, and friends who already qualified.
• 7:00
  SPEAKER_00: It's like turning an informal, under-the-table favor into a legitimate corporate job, but your office is your own living room.
• 7:07
  SPEAKER_01: It's a huge shift.
• 7:09
  SPEAKER_00: But I have to push back here.
• 7:10
  SPEAKER_00: Doesn't adding W-2s, background checks, and training make this feel, I don't know, overwhelming for a family just trying to help?
• 7:18
  SPEAKER_01: I get why it sounds that way.
• 7:19
  SPEAKER_01: But if we connect this to the bigger picture, this paperwork is actually a massive benefit.
• 7:25
  SPEAKER_00: How so?
• 7:26
  SPEAKER_01: Think about the alternative: an informal, under-the-table cash arrangement between siblings to pay the sister who lives with mom.
• 7:33
  SPEAKER_00: Oh, that sounds like a Thanksgiving dinner disaster waiting to happen.
• 7:36
  SPEAKER_01: Exactly.
• 7:37
  SPEAKER_01: Informal arrangements breed resentment.
• 7:39
  SPEAKER_01: There's no job security, no paper trail, zero social security contributions for the caregiver.
• 7:44
  SPEAKER_00: Right.
• 7:44
  SPEAKER_00: They look unemployed on paper.
• 7:46
  SPEAKER_01: Right.
• 7:46
  SPEAKER_01: The formal agency structure protects both the caregiver and the family.
• 7:50
  SPEAKER_01: It provides legal employment protections, and it ensures taxes are handled correctly.
• 7:55
  SPEAKER_01: Plus, you know, the caregiver has passed a background check and knows how to safely transfer a human body without injuring themselves.
• 8:01
  SPEAKER_00: Aaron Powell So since a family must work through a contracted agency to get paid, how do they pick one?
• 8:07
  SPEAKER_00: Like what does that agency actually do?
• 8:09
  SPEAKER_01: Aaron Powell Well, that's where home care powered by AUAF comes in, is such a great example.
• 8:12
  SPEAKER_00: Right.
• 8:13
  SPEAKER_00: The agency we mentioned earlier.
• 8:14
  SPEAKER_01: Yeah.
• 8:14
  SPEAKER_01: They've been a leading Chicagoland agency for over 30 years, and they are fully licensed by the Illinois Department on Aging.
• 8:22
  SPEAKER_00: Aaron Powell, which means they can process these specific funds.
• 8:25
  SPEAKER_01: Exactly.
• 8:25
  SPEAKER_01: And AUAF currently pays eligible caregivers a rate of$211 per hour.
• 8:31
  SPEAKER_01: Though it's worth noting that rates vary by agency, it's not a state fixed number.
• 8:35
  SPEAKER_01: Trevor Burrus, Jr.
• 8:35
  SPEAKER_00: Okay.
• 8:36
  SPEAKER_00: So the state sets the hours you get, but the agency sets the actual hourly wage you get paid.
• 8:40
  SPEAKER_01: You've got it.
• 8:40
  SPEAKER_01: And AUAF serves a massive area.
• 8:42
  SPEAKER_01: I mean, Chicago, Arlington Heights, Barrington, Bloomingdale, Evanston, Hoffman States, Lincoln Wood, Schaumburg, Skokie, and more.
• 8:51
  SPEAKER_00: It's huge.
• 8:52
  SPEAKER_00: But there's this one crucial accessibility feature I noticed in the notes.
• 8:57
  SPEAKER_00: Their staff is fluent in English, Assyrian, Arabic, Spanish, Polish, Russian, Ukrainian, and Persian.
• 9:05
  SPEAKER_00: It's like an HR department for a family's caregiving journey.
• 9:09
  SPEAKER_00: But why is it so absolutely critical for a home care agency to have staff fluent in so many different languages?
• 9:16
  SPEAKER_00: I mean, if the caregiver speaks the senior's language, why does the agency need to?
• 9:21
  SPEAKER_01: Because of the intimacy of caregiving.
• 9:22
  SPEAKER_01: I mean, explaining medical and personal needs is highly vulnerable.
• 9:26
  SPEAKER_00: Right.
• 9:26
  SPEAKER_00: You're talking about really sensitive stuff.
• 9:27
  SPEAKER_01: Yeah.
• 9:28
  SPEAKER_01: You're talking about cognitive decline or trying to articulate the difference between a sharp nerve pain and a dull ache.
• 9:34
  SPEAKER_01: Language barriers aren't just an inconvenience here.
• 9:37
  SPEAKER_01: They can compromise the care itself.
• 9:38
  SPEAKER_00: Aaron Ross Powell Because you can't use a translation app for a medical crisis.
• 9:42
  SPEAKER_01: Exactly.
• 9:42
  SPEAKER_01: The agency bridges the gap between cold state bureaucracy and cultural comfort.
• 9:46
  SPEAKER_01: It lets families process paperwork and manage care in the language they actually dream in.
• 9:51
  SPEAKER_00: That makes total sense.
• 9:52
  SPEAKER_00: So the family has the pay and they have an agency like AUAF, but caregiving is still a grueling 24-7 reality.
• 10:00
  SPEAKER_00: You don't just clock out.
• 10:02
  SPEAKER_00: So what happens when the paid caregiver just needs a break?
• 10:07
  SPEAKER_01: This is where we have to talk about respite care.
• 10:09
  SPEAKER_00: Okay.
• 10:09
  SPEAKER_01: Respite care gives the family caregiver a scheduled break while a professional steps in so the senior continues to get support.
• 10:15
  SPEAKER_00: So what does this all mean?
• 10:16
  SPEAKER_00: I kind of think of it like a pit stop in a NASCAR race.
• 10:19
  SPEAKER_00: You simply cannot run on the same tires forever without a blowout.
• 10:23
  SPEAKER_01: That's a great way to put it.
• 10:24
  SPEAKER_00: But the notes say many families don't realize respite care exists until they are completely stretched thin.
• 10:31
  SPEAKER_00: Why are families so hesitant to ask for respite care early on in the process?
• 10:35
  SPEAKER_01: It's the psychological toll and the guilt.
• 10:37
  SPEAKER_01: There's this mindset of this is my mom, I should be able to handle this.
• 10:41
  SPEAKER_00: And getting paid probably makes that guilt worse.
• 10:43
  SPEAKER_00: Like I'm making$21 an hour, I can't complain.
• 10:45
  SPEAKER_01: Yes, exactly.
• 10:47
  SPEAKER_01: But structured respite is built into the state's care plan, specifically because caregiver burnout is a known systemic risk.
• 10:54
  SPEAKER_01: If the family caregiver collapses from exhaustion, the senior ends up in a nursing home, which defeats the whole purpose of the CCP.
• 11:02
  SPEAKER_00: The whole system just breaks down.
• 11:03
  SPEAKER_01: Right.
• 11:04
  SPEAKER_01: Which is why the first step for everything we've discussed today, including respite, is contacting a local care coordination unit to request that initial assessment.
• 11:13
  SPEAKER_00: Build the scaffolding early.
• 11:14
  SPEAKER_00: Okay, let's do a quick recap.
• 11:16
  SPEAKER_00: You start with the care coordination unit, pass the$17,500 asset and age requirements, get the needs assessment, and then get hired by an agency like AUAF.
• 11:26
  SPEAKER_00: And you can actually call them at 773-274-9262 to get that W 2 and the$21 an hour paycheck.
• 11:32
  SPEAKER_01: That's the path.
• 11:33
  SPEAKER_00: Before we sign off, do you have a final provocative thought for the listener to sort of mull over?
• 11:37
  SPEAKER_01: I do.
• 11:38
  SPEAKER_01: With state policies now allowing spouses and family members to become formal W 2 employees for caring for their own relatives, I wonder how this might permanently alter society's definition of going to work.
• 11:49
  SPEAKER_00: Oh wow.
• 11:50
  SPEAKER_01: Right.
• 11:50
  SPEAKER_01: Like will the family home become the most recognized and maybe most important workplace of the next generation?
• 11:57
  SPEAKER_00: Aaron Powell That is fascinating.
• 11:58
  SPEAKER_00: The living room is the new office.
• 12:00
  SPEAKER_00: Well, thank you so much for joining us on this deep dive.
• 12:02
  SPEAKER_00: And to everyone listening, definitely look into your own state's options.
• 12:06
  SPEAKER_00: We'll catch you next time.