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In-Home Supportive Services (IHSS) for Ages 0-5

In-Home Supportive Services (IHSS) for Ages 0-5

Published: Jun. 13, 2024Updated: Jun. 13, 2024

If you've been told that your child is too young to receive In-Home Supportive Services (IHSS), know that a denial can't be based on age alone! On June 6, we sat down with Undivided Public Benefits Specialist Lisa Concoff Kronbeck to get a full overview of this program, including special tips when applying on behalf of a child under age 5.

Watch the full event above, or check out the recap with highlights here!

Helpful resources

Here are the links Lisa mentioned during her presentation:

Full event transcript

Hello everyone and welcome to Undivided Live! So most likely, if you're listening, you have a little one and you want to learn more about in-home supportive services, otherwise known as IHSS. So this program provides critical care, giving support to families like ours who are raising kids with disabilities. Yet many families with younger children often hear misinformation and are even told their kids are ineligible because of their age. So we meet family after family who wait to apply because they were given incorrect information, and for a program so important, we know that there's no time to waste. So we want to get you the help that you need as soon as possible. We're going to cover eligibility available hours and how they're determined, protective supervision, paramedical services, becoming a parent provider versus hiring an outside provider. What you say when a caseworker tells you that children don't qualify and much more, and thankfully, here to help us today, we are excited to welcome back Undivided's public benefits specialist Lisa Concoff Kronbeck who is going to lead us through each question and step. Lisa educates families about government programs that support our kids and families like Medi-Cal, Regional Center, CCS and our focus for today, IHSS. She's also the mom of a kiddo with Down syndrome and is herself an individual with disabilities. Hello Lisa, welcome back. Hi, thank you. Lisa has much to share. So, take it away, Lisa. All right, let's get started. Let me just share my slide show here.

So today we're talking about in-home supportive services for ages 0 to 5, but a lot of this information is still relevant if you have an older child, so stick in there because while we're going to focus on 0 to 5, the terminology is the same for older recipients as well.

All right. So another couple... a couple more things to keep in mind. Number one, be aware that the information here is publicly available and does not constitute legal advice. We are here to help you navigate the system and save time and bring clarity and confidence and connect you with the best available information and resources, but we are not authorized to provide legal advice. If you need legal advice, please consult with an attorney.

Spoiler alert, there's going to be a lot of information ahead. You are not going to remember every single thing that we talk about here, so do not worry about that. The goal is for you to feel more comfortable navigating the system and get some familiarity and confidence so that when you're in your home meeting or you're. when you're talking to IHSS on the phone and they start throwing all these specific words at you in different terms and concepts, that those are a little bit more familiar to you, and so it's a little bit less intimidating.

So what is... what is the in-home supportive services program? So IHSS is a Medi-Cal program that provides home-based personal care and related services, so that people with disabilites can remain safely at home, and we're going to sort of break this down into four components. We’ve got Medi-Cal, we’ve got home-based personal care and related services people with disabilities and remain safely at home, and we're going to... we're going to flip two and three just for the purposes of this presentation.

So Medi-Cal... What is Medi-Cal? You may have heard the words Medicaid and Medicare and Medi-Cal in discussion of public health systems. Medicare is linked to Social Security, disability insurance and retirement. We're not going to go over that today. Medicaid is need-based health coverage that is linked to usually household income, but in some cases also to disability. Each state runs its own Medicaid program, funded in part by federal funds and in part by state funds. Medi-Cal is California's version of the federal Medicaid program. So I hope that clears up any confusion with all those terms.

There are four main ways of qualifying for Medi-Cal as a person with disabilities. Most common is enrollment based on household income, and that's based on modified adjusted gross income. And the next most common is Supplemental Security SSI. And that is a cash benefit for children and adults with disabilities. SSI is also based on household income. And number three is there are some specific programs for disability that use slightly different financial criteria. They may or may not have a share of cost. There may be slightly different qualifications. And number three is the 1950(c) Home and Community Based Services waivers. And we will talk about those.

So mainly we're just going to talk a little bit about applying based on household income. The federal poverty level is that the calculation that eligibility is tied to. But since cost of living is higher in California, they tend to have the qualification be a multiple of the federal poverty level. So instead of... instead of just 100%, which is the federal poverty level, for adults to qualify, it's a 138... annual household income is 138%. And for children's 266% of the federal poverty level. So even if you are not eligible based on income, your child may still be. And so if you click on this link, you can go ahead, put this in the comments. If you click on the... if you go to the Covered California website, this is how to read the table, right? So you want to find number one, find your household side... size, and then scroll across for a child. You're going to scroll across to 266% and you'll go... If your household size is four you scroll across to 266%, and if your household income, your modified adjusted gross income is below $82,992, then your child should be eligible for Medi-Cal based on income. But in California, you know, cost of living is higher, which means wages are sometimes higher, even if that doesn't mean you're living at a higher level. So there are also programs that allow your child to access Medi-Cal based on their diagnosis and their eligibility for certain institutions.

So like we said, Medi-Cal is generally a need-based program. And so for kids living at home, Medi-Cal is going to deem most of the parental income and resources of the child and treat it as their own. So basically, they're going to count it as though the child has access to it. When a person lives in an institution like a hospital or a nursing home, only their own income and resources are countable. And so institutional deeming is... you've probably heard that phrase. So historically it wasn't uncommon for kids with developmental disabilities to be institutionalized at birth or when their disability started to manifest. You know, 50, 60, 70 years ago, it was pretty common for kids to be put in an institution if they had a disability. So the waiver program keeps people with disabilities out of the institutions by funding home and community based services, but using institutional eligibility criteria. So if your child meets the admission criteria for that kind of facility, depending on which waiver you're applying to Medi-Cal will only look at the child's income and resources without regard to the parental income. So they will treat them as if they're already in an institution in order to determine whether they qualify for the waiver, whether they qualify financially. So one of... the main one I'm going to focus on right now is the Regional Center waiver. Most children who have developmental disabilities, as defined by California law, will qualify for the HCBS-DD waiver. Home & community based services waiver for the developmentally disabled. That's available to most consumers of Regional Center services under the Lanterman Act. So you might also hear this referred to as the deeming waiver or the institutional deeming waiver or just the waiver or the Regional Center waiver. It's all the same thing. Some people who have more medically complex conditions require additional supports. For example, adults who need LVN service at home or children who have physical medical issues but do not have developmental delays. There is also the home and community based alternatives waiver which can serve those students... those children who don't qualify for Regional Center services. However, the HCBA waiver does have a waitlist, whereas the HCBS-DD waiver does not.

Okay. So I'm just going to go over these really quickly to be eligible for the waiver, you need to live at home with your family and not in an institution, have to have a valid Social Security number, be ineligible for Medi-Cal based on household income. So part of the process of applying is that you need to show that you don't qualify based on household income. You need to have a diagnosed developmental disability and two or more qualifying conditions in the area of self help, motor functioning, social, emotional, functioning, special health care conditions or extensive medical needs and receive at least one funded waiver service. Some Regional Center coordinators will tell you that, we don't have access to the waiver unless your child is over the age of three. That is not true.

However, if your child is under three and is qualified under the Lanterman Act, they also need to have at least two qualifying medical needs or health conditions. And we have an article... Undivided has an article about the waiver that goes into that in a little bit more detail. All right. So we got Medi-Cal out of the way and I could do a whole presentation, just on Medi-Cal, but we're just wanting to get to the basics. So people with disabilities, what does that mean? So in the context of services for children, it's important that we understand that hours are only going to be awarded for specific services that exceed what a parent would be usually expected to provide to a typically developing child of the same age. So the hours are awarded based on need, not based on diagnosis. So be prepared to discuss your child's specific needs and limitations for each of the tests we're going to discuss. It is not based on just, my child has this diagnosis and therefore they need IHSS. Be willing to talk about your child's needs and limitations. It can be really tempting to want to share our kids strengths and and express our pride at the progress that they've made, but your words will often be taken at face value. The example I always give is if you tell the caseworker, I'm so excited. My child finally learned how to read and recognized their name. We've worked so hard on this, and their name has four letters in it and they finally recognize their name. They might write down on the form, "Child can read."

So just be aware that you're not... I'm not saying exaggerate, never exaggerate or overstate your child's needs, but be prepared to be willing to talk about the child's limitations. And in some cases, that might mean that the conversation needs to happen outside the child's... outside of where the child is so that they don't have to hear you talking about their limitations. That is a decision for your family, if you want to think about that. And when parents have biases, when discussing your child's limitations, think about what they can and can't do on their worst day or on like the average day. Like, don't be... don't base it on like, this is their best day. This is what they were able to do on this best day. Think about like the really difficult times. All right. So that's people with disabilities for this conversation. Home-based personal... home-based personal care and related services. So what services will IHSS provide? Which services are available to children? So overall, because elderly people and other adults with disabilities also access this program.

So generally speaking, IHSS can fund domestic services, non-medical personal care and related services, accompaniment to medical appointments, protective supervision, paramedical services and yard hazard abatement. But for children, you're going to see that certain services are not available because parents are expected to provide that service to their child regardless of whether or not they have a disability. So those are not going to be available to children. So, non... so the personal care services that we're generally talking about are these are the ones that children can usually get, are ambulation bathing, oral hygiene and grooming, dressing bowel and bladder care, feeding, transfer like in and out of seats or from point A to point B from room to room in and out of the car we got respiration, help with prostheses or medical or medication set up menstrual care for older kids and rubbing skin and repositioning.

Now related services usually don't come in until the child is a lot older, and unless you can document some sort of extraordinary need because your child's disability makes it more difficult for them to do these tasks makes it take longer for them to do these tasks. So you may like, you know, if your child has a G-tube and their G-tube was constantly leaking and they're constantly feeding the bed, you may have to do more laundry than is ordinary. And so you may be able to get some hours for extraordinary need for laundry. So these services are based on your child's age as well as the level of assistance needed for each task. So it's not just going to be like, my child needs help with this. Therefore I get hours. It's going to be based on what a parent would typically be expected to provide to a child who doesn't have a disability. You're not going to be asked to specifically rank your child's skills in these areas, but it is helpful to go into the process with a good understanding of how they're going to assess your child's needs.

So this... this is a page with a whole lot of numbers on it. Don't be alarmed. I will explain exactly what these numbers mean. So I'm going to show this for a second. Let's pop the link into the chat and then if you have it in front of you so that you have it to refer to. And then let's talk about what all these numbers mean. So a rank one typically means that the person can do it independently, but for children, a rank one means that the parent would be expected to perform the task regardless of disability. So, you know, the classic example is diapers. If your child is one and a half and is in diapers, you're not going to get toileting time because a typically developing one and a half year old usually is still in diapers or Pull-Ups. But if your child is seven or eight and still in diapers, then that's above and beyond what is typically expected. And so then you would be looking at toileting hours. Ranks one through five, whenever you see a rank one through five on this chart, that means that they're going to assess specific to your child.

So... and we'll look at how they break that down in a minute. Anywhere you see a rank six, that means that all of the functions of the task are met by paramedical services and we will talk about that a little bit later. So, for example, meal prep, meal preparation for most children is either a one or a six. Either the parent is expected to prepare meals for the child or the meals... The child has to have food cut into teeny tiny pieces or pureed to put in through a G-tube, or they're a choking risk, or you have to set up the formula and pump for a G-tube feed. Either way, these are paramedical services. And so that would be ranked as a six. So they break it down a little further, and sometimes each of the different tasks has its own ranking. But generally speaking is rank one is they're able to do it totally independently and they're not going to authorize any hours for a rank one. For rank two is they can perform it, but they need a little bit of verbal help, such as, you know, a reminder, guidance or encouragement. But they don't actually need hands on assistance. Rank three is you can perform the function with some human assistance, but like direct physical assistance. But they're still participating in performing the task. Rank four is they can perform it, but like really only with significant human assistance. So like they're kind of going through the motions but with hand over hand, and you're really the one who's doing it, and they're just kind of participating a little bit. And then rank five is they cannot perform the function at all independently. They have to have whether or not someone's helping them, someone has to basically do it for them.

So I didn't put this link in the chat, but there's... if you Google like IHSS annotated assessment criteria, you can also find out a little bit more about each of the rankings and then they break it down further. And for each task they talk about how many minutes you get for each ranking, for each task. But we're not going to give in to that because it's a little too into the weeds. So let's look at this again. Now hopefully this makes a little bit more sense. So anywhere that you see a one, you're looking at things that parents are typically expected to do for their child anyway. If you see a one or a four or five, that means that they're only going to... that either the kid can do it for themselves or they need total assistance or mostly total assistance. If they just need a little bit of reminding, they're not going to give hours for that. And anywhere you see a one or six, either that is the... the parent is expected to do it or it's a paramedical service. And in that case, you can potentially get hours for it. And then you see here where in some columns it says one up until a certain age. And those are things like walking. You can see that by five years old, they anticipate that most children are walking. So by five they'll rank it one to five instead of assigning it to the parent. For bathing, oral hygiene and grooming, we're not going to see ours until eight years old. For dressing, it's five. Bowel and bladder care, you'll start getting hours at four. Transfer is one because a lot of times kids can go kind of from one place to another, like they crawl and then feeding, kids can usually feed themselves by about eight unless it's a paramedical service.

So if you have any questions about this, we can get to them in the question and answer period. But this is a really helpful tool to figure out whether like when you should apply because you know, you might be... you might have a child who is two or three and you're like, is it time to apply for IHSS? Do I meet any of these criteria? And this is a good chart to kind of tell you when is it good... Like when you'd be able to get hours for all of these tasks. I'm not going to go too far into this, but this is just... these are a couple of examples of how they gauge. Like they use the Vineland Scale and a developmental guide. They just kind of look at basic developmental guides for what children are expected to do for themselves on average at certain ages. Okay. So those are the personal care services and the rest of this... this part of the discussion, it's going to focus mostly on the portion of this phrase that is... that a lot of the hours come from for children who are under age five, because as we saw in that chart, there's not a whole lot that parents are not expected to do for their child under age. But most of your hours are going to come from either protective supervision or paramedical services.

So these are the kids who are most likely to get authorized hours before age five is children who have a lot of paramedical services and children who require protective supervision. So what are paramedical services? Paramedical services are services that are ordered and directed by the doctor or another licensed medical provider. Some examples include G-tube feeds, injections. I'm not going to read this whole list, but you can read it in front of you. Enemas, monitoring vital signs, but specifically something where you've had to get training from the doctor because you have to give medicines based on judgment or you need to, like you're checking for blood sugar, but then you know that you have to give them medication if the blood sugar is too low or food or if you have to assess their vitals to see whether they need a rescue inhaler, anything where you have to be trained in order to know how to do that thing. And the doctor is sort of overseeing it. That's a paramedical service. So what do the forms look like?

So this is the SOC 321. I think we'll go ahead and put it into the chat and this form is what you will have your doctor or other medical provider fill out if you have different specialists. You know, if you have a cardiologist who has their list and you have pulmonology, a pulmonologist who has their list. You know, gastroenterology has their list. You can either have each of them fill out a form or you could make something like a spreadsheet and have the primary care doctor sign off on each page of the spreadsheet to like work with your doctor to create a spreadsheet and then have them sign off to show that they're the ones who are overseeing this. But if, you know, if the pulmonologist or if the gastroenterologist is the one looking over it, you may want to just have each specialist do their own form. And so if you do an attachment, make sure that the doctor writes "see attachment" so that they know that there is an attachment. You need to make sure that the doctor indicates the frequency, which is the number of times per day, and how long each task should take from start to finish. And that includes from the minute you stand up to go do the task to the minute you come back and sit down when you're done, it's not you set everything up and then you start the clock for how long it takes you to put in the extension and start the pump. You start from you have to get up, you have to go get the bag. You have to put the formula in the bag, you have to prime it, you have to set the pump. And all of these things are part of these tasks. So make sure that you're keeping track of all of that time.

The doctor should also indicate in that last column it says, "How long should the service be provided?" They can either write indefinite or they can write a certain number of years. It's going to depend on what the service is. If your child's needs extend the amount of time that are usually required for a task, you should also put that in here. For example, if the child has trouble sitting still for a breathing treatment or venting of a G-tube or changing diapers, for example, if it takes you longer to do all of those things because of the child's behaviors, you want to make sure to include that. If you have to monitor certain things more frequently because the child's unable to communicate their symptoms and how they're feeling, for example, with blood sugar or pulse oximetry or anything else where you have to measure something to see how the child is doing because they can't tell you how they're feeling. You should also indicate that if you have to do it more often because of that. I also suggest that if your physical therapist or occupational therapist has a home plan for you to sort of reinforce what's happening during sessions that they write out a treatment, like a treatment plan, a home treatment plan to sort of quantify what you're doing because, you know, the therapist will have you do exercises or have you do certain activities with them to reinforce the clinical treatment. And it's really hard to quantify that. But you're spending a lot of time on that. So to the extent that you can quantify that and the therapist writes, you know, how often you should be doing it, for how long, how many times per day, that can be really helpful. And then on the paramedical services form, have the doctor write, "home therapy plan as directed by the therapist" and attach a copy of the home plan.

Okay, so what is protective supervision? This could be also its own presentation. So protective supervision hours are awarded to recipients who require 24/7 supervision to prevent injury to themselves or others due to severely impaired judgment, orientation and/or memory. Recipients' actions need to be non-self directing, and the risk of harm to self or others must be due to their severe cognitive impairment. Non self-direction is defined by IHSS as an inability due to a mental impairment or mental illness for individuals to assess danger and the risk of harm, and therefore the individuals would most likely engage in potentially dangerous activities that may cause self harm. Now, in other clinical settings, self-direction can mean something different. But for IHSS, self-direction is specifically about the individual's ability to assess the risk of harm or danger because of their actions before they do anything and therefore put themselves at risk of causing harm. Protective supervision is not going to be awarded for monitoring in anticipation of a spontaneous medical emergency like a seizure as opposed to an accidental injury.

However, you can seek paramedical services for that intermittent monitoring that I was talking about if you need to monitor more often because of their lack of communication ability, but protective supervision may be awarded in limited circumstances if the medical emergency arises because of the person's cognitive impairment. So if they have a trach, if they have a G-tube or IV port and they're pulling at it because they don't understand the connection between what they're doing and the pain they're feeling and they don't understand that if they pull it out, it's going to cause harm to them because these are life sustaining devices that can be cause for protective supervision because it's their cognitive impairment that is putting them at risk of harm. And this can be really important for children who are not ambulatory, because if you have to keep your eyes on them at all time because they think that G-tube is a toy and they're chewing on it and pulling it out and you apply for protective supervision, but your child is not ambulatory, IHSS may come back and say, well, they can't even walk. How are they going to get themselves in trouble? But you give this example of this child can harm themselves significantly without even taking a step because they have access to this device that is feeding them.

And, you know, if you've had a child, the G-tube comes out, the stoma closes, that could be another surgery. So just keep this in mind. If your child has significant medical complexities and life sustaining devices, that if they're not mobile, they still have the capacity to accidentally harm themselves because that's part of the consideration is not only are they likely to harm themselves, but are they likely to ever be in a situation where they are able to cause harm. So this comes up in that scenario. You also cannot get protective supervision for intentionally self-injurious or aggressive behavior. The recipient cannot receive protective supervision to prevent intentional self harm or deliberate violence. So this is also a situation where aggressive can mean something different in a clinical setting, because any time a child is lashing out or throwing things or like, hurling themselves to the ground and hitting their head on the floor, sometimes that will be written in treatment notes as self-harm or aggression. But what's actually happening is the child doesn't understand that they're going to hurt themselves if they hit their head. They're not intentionally trying to hurt someone. They're not sitting there thinking, if I throw out my arm, I might accidentally hurt someone. So it's not self directing behavior. And so just it can be common for us to just sort of use words as they're used in a clinical setting and say, my child gets aggressive, but stop and think. Is the child actually being aggressive in an intentional way or is it just that they don't understand that they could actually hurt... that they can accidentally hurt someone. So think about the language that you're using when you describe your child's behavior and make sure that the language you're using is actually descriptive of the child's behavior.

You also cannot get damage to property, get protective supervision for damage to property as opposed to physical harm to self or others. But this can get a little bit blurry. If your child is throwing glass, the issue is not, oh no, I lost the glass. The issue is somebody might step on that glass and get hurt. So if your child is breaking things, I think... and that's part of your behavior law you want to think about, they're breaking things. So what? Like what... what is the outcome of that thing getting broken? Is it just like, you no longer have that thing? Or is there a real risk of harm to the child as a result? So this is the protective supervision form. I think we can throw it in the chat so that you can click on it and take a look for yourself if you can't see the screen. There will be a chance for your doctor to write the diagnosis, the prognosis, whether it's permanent or temporary. If your child has a developmental disability, typically they're not going to grow out of that, so ideally that would be more permanent. But, you know, some doctors may be hesitant to do that for younger children. But either way, like you shouldn't be denied protective supervision if it says temporary, because it's just... it means we need to reassess again down the line. In terms of the appropriate boxes, you've got memory, orientation and judgment. So these can be really difficult to assess for young children. And sometimes doctors are a little bit hesitant to check these boxes because it's like, how do I judge a child's orientation? How do I judge a child's judgment? And the thing they really have to think about is in order to get protective supervision for a young child, you need to show that they need more supervision and more close supervision than a typically developing child of the same age. So if a young... If a three year old can tell you, you know, as far as like memory and orientation, can they tell you where they are? Can they tell you if it's night or day? Can they tell you where they live? Can they tell you their mommy, their parents' names? There's.

From memory, it's like, you know, an example is my daughter would spill a cup of water and then she would fall in the water and then she would get back up and then she would forget that she spilled the water and fall in it again. Usually, younger children, as they're learning to go through the world, they're learning from their mistakes and not doing the same thing again. So these are some things to think of as you're talking with your doctor about this form is think of it... Don't think of it like relative to adults, think of it relative to other children. And is... is the child more oriented? Does the child have more impaired memory or judgment than another child of the same age who doesn't have a disability? You should also, before you bring the form to your doctor, it's also helpful to prepare a log of all of your child's potentially dangerous non-self interacting behavior, partially to help the doctor fill it out and partially to give to the IHSS worker to show them that there is a need there. It's important to keep track of not just every time your child actually hurts themselves, but also every time you intervene and prevent them from hurting themselves. Because it's that intervention. That's what they... that's exactly what they need to not be injured. So every time you stop your child from walking out the door, every time you stop them from pulling out their G-tube make a note of that. And in that log, part of what they want to see is that these behaviors are not happening at predictable times. The child needs 27 care because, you know, if the child only ever elopes when you walk from the house to the car, that's a predictable time. But if the child just tries to walk out of the house at all times of day and doesn't know about the street, that's less predictable. So you want to show that if your child's behaviors are not predictable, you want to make sure that IHSS understands that. And again, it's not awarded for intentional self harm, intentional aggression or property damage.

However, if the child has other behaviors that do qualify for them, for protective supervision, just because they have demonstrated some form of aggression doesn't disqualify them. It just means they can't get it for that reason. They can still get it for all of the other reasons that they do qualify. This is just some advice from Disability Rights California in their publication on protected supervision. A lot of times IHSS will kind of say, it's... you can't get protective supervision because all three boxes are not marked severe, but they're not... it's not supposed to just be based on a yes or no. Whether all three boxes are marked severe, they're supposed to really take the whole picture into consideration. Obviously, if it says no deficit for all of them, you're going to have a problem. But if it's kind of like there's really bad judgment or a really bad orientation, but the memory is sort of moderate. It's just there's all sorts of different permutations. Right. But they really need to look at the whole picture to see if they need more supervision than a typically developing child of the same age. So another form that you're going to see when you're applying for protective supervision is the 24 hours a day coverage plan. That is SOC 825. This does not need to be a detailed form. They're not asking you to identify where you will be at every moment of the day. This is just to show that you have a range. IHSS does not pay for 24/7 care, but granting protective supervision is an acknowledgment that the child needs 24/7 care. And so you need to show that you have that arranged. So some examples might be, you know, from eight to three X's in school with a 1:1 aide, from three to eight X's supervised by parent provider. Sometimes it's easier to say my child is supervised by parent provider at all times, except during school hours, 180 days per year when they're in school during the school year. And then that time they have a 1:1 aide and then during 1:1 clinical therapies, when the therapist is working with them, one on one. The idea is just show that adult eyes are on them at all times.

Okay, If you don't have time to create a behavior log, if your interview is like tomorrow or your doctor's visit is tomorrow, and you won't be able to get another one for months or weeks, another thing you can do is just kind of make a running list of just all the different things you can think of that your child has done at random times when they've been injured or when you stop them from getting injured because of their impaired judgment, orientation, or memory. Another thing you can do is right out a schedule of your typical day and each point along the way, talk about the different ways that your child unsupervised would encounter danger. But you just have to remember that you can't get protective supervision if these behaviors are only happening at predictable times, because then they're going to say, well, they only need supervision at that predictable time. Yeah. Okay. So those are the four key components. What we're going to go over now is some of the frequently asked questions that we get a lot. So I'm not going to read these off because we will get to each of these. So the first question that I hear a lot is what is the monthly maximum for IHSS hours? So the maximum allowable hours vary depending on whether the child is considered severely impaired or non severely impaired. And that is not a judgment call. Like they're not going to look at one child and say that's a severely impaired child and that is not... It is totally based on the number of hours they require and that are authorized. So severely impaired means that a recipient is authorized for 20 or more hours a week of non-medical personal services, paramedical services and meal prep. So those are all those services that we talked about before. So if they have 20 or more hours of those services authorized per week, then they're considered severely impaired. And in that case, the maximum hour number is 283 hours per month. Sometimes you'll you'll hit 283 and they'll say, well, we're not even going to look at these things because you're already at the maximum. No, still have them assessed for all of the different areas because any unmet need should still be documented on the notice of action. You want unmet need to still be listed on the NOA.

Non severely impaired means that they're... they have fewer than 20 hours per week. The maximum on... some. so IHSS is funded by a number of different programs. On some programs the maximum is 195. But on the program that funds the waiver for kids who are... on the program that funds IHHS for kids who are on the waiver, it's generally going to be the number of hours a month that they're authorized for all their services, plus 195 hours for protective supervision. So if you've got 40 hours a month of personal care services and then you've got 195 hours of protective supervision, your hours are 235 a month. Can I be my child's IHSS provider? This one has changed. So until February of this year, you could be your child's provider and get paid only if you could not... if you were prevented from working full time because of the child's extraordinary needs and there was no other available parent to provide care, so if the other parent was working full time or in school full time. That has changed. However, some caseworkers are still asking for parents' work schedules or for proof that they don't work full time. So I'd like for this link to be posted in the chat. All County Letter number 23-106 Keep this bookmarked because if your caseworker... not... I don't know what kind of training the caseworkers have had at this point. It's been a few months but I know that as of a few months ago the caseworkers were still asking about work schedules. And so if they seem confused and they're telling you, no, you can't be paid as a provider because you work full time, give them this all county letter or reference it, tell them, read all county letter number 23-106 because this addresses all of the changes. So you do have to still be eligible to work in the United States and you will still have to do a criminal background check and fingerprinting. And there's a Live Scan fee for this. You will also have to attend an orientation session. But that's it. That's the requirement. There's no... there's no requirements about working or not being in school. But if you do work full time or you are ineligible to work based on your visa status or your convictions history, you do have other options. So you can hire somebody else to do some or all of the hours. For example, if you are ineligible to work for IHSS, thus you have to have somebody else be the provider.

If you work or attend school full time, you can be the provider when you're home. But even if you're at home, even if you're working from home, you can't be billing. In the same hour, you can't be billing your employer and IHSS. You're either working right now or you're providing IHSS to your child. So if you... when you are not available and your child needs those services, you will need to find another provider during that time. But you can be the provider when you are not working or in class during the hours that you're home. As with parent providers, third party providers do have to be eligible to work in the U.S. and they do have to do the same background checks. If you need help finding a provider, you can call your county's public authority for IHSS providers. Every county has one. Here's the links. But you can also just search 'California IHSS offices' by county or your county name and 'public authority.' Public authority's the phrase because that's who provides the resources for providers as opposed to like determining eligibility. If IHSS tries to reduce or terminate hours. If you are already receiving IHSS and you receive a notice of action, which we call an NOA in terminating or reducing hours, you can file an appeal in writing within ten days of receiving that in a way, and write on the form that your child requests 'aid paid pending appeal' and that means that the benefits continue at the same level while you're going through the appeal process. That is not going to be an option, obviously, if you are applying and they're denying you, but if you already have those hours and you're trying to prevent them from being reduced or terminated, you can get aid paid pending appeal if you file within ten days in writing. And then the benefits would continue during the appeal process.

If you are denied or don't get enough hours, you can file an appeal, you can submit one online, you can mail an appeal. The fastest way is to call. But if you call, I would suggest calling again in a week and just be like, "Hey, I called and filed appeals, Just want to make sure it was received and processed." If you haven't gotten anything in the mail at that point. It's just I like to follow up on any phone calls and you can also fax it. Be aware that if you're appealing because you feel your child needs more hours than what they awarded, when they do your reevaluation, they may increase or decrease your hours on appeal. So just keep that in mind. Very often, if you file an appeal request, the county will offer you a reassessment in exchange for a conditional withdrawal. That is a very common thing to happen and plenty of people handle their appeal just through the conditional withdrawal. This might happen if you think that the initial assessment didn't go far enough or the caseworker didn't listen to you.

If you agree to a conditional withdrawal, just make sure that whatever you sign specifically says that if you disagree with the reassessment, the appeal will pick up where it left off with the original date of application, because sometimes they'll say, if you disagree, then you know you can appeal again. But the benefits are going to the retro benefits are going to start over at the point where you disagreed. It should go all the way back to the initial date that you applied for IHSS. You may want to have an advocate or attorney read something over before you sign. That's up to you, just to make sure that your original appeal rights are preserved if you disagree with the reassessment. If you disagree with the reassessment, again, those IHSS benefits should go back to the day that you applied if you win that appeal. And that is true even if you don't have to appeal, if you apply and then like three months later you're approved, your benefits should go back to the day that you applied. It doesn't start the day that you were approved. Sometimes the caseworker when you call to file the appeal, sometimes they'll say, "You know, it's just not that time yet. Like maybe your child's not old enough. Just apply again later. If you apply again later, it will start the clock over again on your retroactive benefits.

So if you really believe that something went wrong and your child should be eligible, then you should appeal. If that's... if you believe that your child was wrongly denied. Because if you just forget about it and apply again later, that will start the clock over and you will not get retroactive benefits going back. If you... again, if you disagree with the reassessment, you have the right to reinstate that appeal and request a fair hearing in front of a judge. You can hire an attorney or advocate to help you prepare for the hearing. They usually take a percentage of the retroactive benefit, but they do have a lot of practical experience in responding to the county specific rules and objections. You can also contact nonprofit organizations like Disability Rights California, DRC, or the Office of Clients Rights Advocacy, which is a subset of DRC that operates out of each Regional Center, even though they're not part of the... they don't work... they're not part of the Regional Center. There's Disability Rights Legal Center. If you're in Los Angeles, there's public counsel, there's other organizations. Be aware that some of these nonprofits have a need based income requirement in order to provide direct advocacy, but they might refer you out to someone who can help you.

If your child is a Regional Center client, you might want to start with OCRA because they do specifically serve Regional Center consumers. So common state... common misstatements from caseworkers. Some of the things that you might hear, one we hear a lot is, IHSS doesn't accept clients your age. Your child's too young. We don't give hours for that because it's your responsibility as a parent. All children your child's age require supervision. And that may be true, but it may also not be true. So the rules say that there is no minimum age to receive IHSS. The question is whether your child's needs in the assessed task exceeds those of a typically developing child. So the county's social worker should not assume that anybody is providing services voluntarily. They should not assume that they... that any minor child has a mental functioning score of one which is typical for their age, and they cannot even be denied protective supervision based solely on age. It has to be based on their capacity relative to a typically developing child of the same age.

And on a related note, we might hear... you might have them say, we need you to fill out this form listing all the people who are giving voluntary care for your child without pay. They're not supposed to assume that anybody is giving voluntary care. They're not supposed to assume that a parent will voluntarily provide services that are compensable by IHSS. So if they insist that you fill out the form, you just write, "Nobody's volunteering to provide us compensable services and nobody's volunteering to provide services that are otherwise compensable by just us." Just nobody's volunteering. You can fill it out that way. Another thing you might hear is you can't get hours for transportation and accompaniment to and from medical appointments because all parents have to do that. The rules... if we can get in the child All County Letter number 17-42. They specifically outline when you can get medical accompaniment for a child.

Number one is when the child has an extraordinary need that's due to the disability related functional impairment and is beyond what is expected of a typically developing child. And that's like the refrain that you hear going through all of... through all of IHSS. And not... basically the... it has to be an appointment that's related to their disability. So you're not going to get hours for your annual visit to the pediatrician for your annual wellness check or for your annual shots or just anything that is typical for a child to have to do on a... throughout their childhood as far as medical care. But, you know, our kids see specialists. They have weekly therapy appointments. It's more than just the annual wellness check. And so the appointment has to be related to the disability and an authorized task is required during travel to or from or at the appointment. So if they need help getting in and out of the car, if they're in diapers and they're older and they need to... you need to be there to change their diapers, then this is an IHSS authorized task. One thing to note is that you won't get wait time if you're allowed leave during the appointment. So like if you drop your child off and say to the therapist, "Hey, I'll see you in 50 minutes," and you can go do your thing, during that 50 minutes, you'll get transit time, but you won't get wait time because you don't have to be there.

But if you have to be there to provide an authorized task during that time, then you can get wait time as well. So a little bit about Undivided and then maybe we can answer some questions. I know we're a little over time, but we also started a little bit late, so we'll take a few questions, but about Undivided... So Undivided brings expertise, technology and community together to support parents of kids with disabilities by using Undivided's digital platforms, step-by-step guides one-on-one parent coaching, expert backed articles and organizational tools. Parents can get more resources for their children, and we help you answer the questions: What should I do? How do I do it? And who can help me? And let's get your questions.

Hey Lisa, thank you so much. Okay. I'm looking at these questions. So we definitely have some questions coming in that were answered during the course of your presentation. But we also have some specific examples I think that would be really helpful for lots of parents. So first of all, thank you. That was an incredible breakdown. You covered a lot in, you know, a small amount of time. So and we know for everyone watching, we know it was a lot of information and that it can be overwhelming, but hopefully this recording can be a great framework to take it one step at a time, especially if you haven't yet applied. So many families put off applying because it's intimidating. I think Lisa sort of hinted at that and we just encourage you to get started now because unfortunately, as we all know, nothing happens fast. So just remember and then I'm gonna get to the questions. But there are five big buckets when going through the application process: enroll in Medi-Cal, apply for IHSS, complete doctor forms and behavior log, prepare and complete home visit and appeal if necessary. And we just wanted to sort of repeat those five steps, you know, tackle one at a time. You know, our Undivided resources and our software can help with each step, and we promise it will be worth it. Remember, you don't have to do it alone. So let me get to some of those questions. But I just wanted to repeat those five buckets because, you know, if you just take one step at a time, then it becomes a little less intimidating. Okay. So some of the questions... so this is something that Lisa just covered, but I thought it was good. Just to reiterate, Nina had a question about transport. I travel to O.T. for a 30 minute session twice a week. I'm also involved in the session, so this would be counted for transport to medical appointments because I also drive one way to her ABA agency, but I'm not involved. It's just a drop off that is not counted. Is that correct?

So there's two different things. There's... accompaniment transport, and then there's wait time. So you would get... you would get the time to take them to and from the appointment, as long as you're... as long as you're needed to do an IHSS authorized service, like on the way there or on the way back. And, you know, the transfer can be one of those things. If they can't out of the car independently and a typically developing child of the same age could, then that could be your authorized service. Wait time is a separate calculation, then that's where it's like if you have to be part of it or if you have to be available to provide services, then you get wait time. If you're allowed to go and do your own thing and back then you're not going to get wait time. Okay?

Jessie asked.... She said, "For something like feeding, will the case manager want to see how my child eats when they're in our home?"

It's usually not that detailed. They might ask you about meal times, but the visit, the home visit is not... it's not an extensive observation evaluation. They're mostly coming to go through paperwork with you and to ask you questions and to meet the child. You know, they might want to talk to the child a little bit. That can go well or not go well depending on how the child is. But, you know, sometimes they'll ask questions. And this is where it goes back to like the self-direction thing, because like, sometimes they'll ask, "What's your name?" And they'll say their name and they'll be like, "This child's totally... they're self-directing because they know their name." That's not what it means. But as far as eating, no, I mean, they're going to ask you about meal times. They're going to ask what kind of help your need... your child needs. And if your child needs specific help, you may want to bring it up because, you know, if your child is very young, they may not ask about because they might just assume that's parent responsibility. But if your child needs specialized or paramedical services, specialized care, or paramedical services around eating, then you may want to bring that up.

Maria asked, "What if the parent receives hours for IHSS themselves? What happens to the potential hours for the child?"

Okay, so I've not had this question come up before. My understanding is that you can... that an IHSS recipient can still provide IHSS to another recipient, but they can't provide... they can't provide the same services that they're receiving. And I. they... don't quote me on that, but I believe that that is the rule. So like, if somebody is getting hours for dressing because they're ranked five and they can't physically dress themselves, they're not going to be able to get hours to physically dress their child. But a person who needs some physical help doing certain tasks could provide protective supervision, could feed their child, could, you know, if someone just like, needs some help bathing and preparing meds, they can still, you know, take care of their child. You know, there's a wide range of services that IHSS covers and they don't all overlap. So if you need help with certain things but those aren't the same things that your child needs help with, then you should be okay. But if you're... if you can't physically... if you physically are not able to do certain things for yourself, then they're going to say, "Well, then how can you do it for your child?"

And it looks like Dailene had a follow up similar to that. Can a person on SDI be a parent provider?

And that is a great question and I would love to research it. It's tricky because state... now are you saying SSDI or state disability because...

Yeah, Dailene, let us know because all I'm seeing is SDI.

Because state disability, it should not interfere because state disability means that you can't do your customary line of work but federal disability and I don't want to answer that question because I don't want to answer it incorrectly. My inclination is there's two different ways looking at it, because IHSS is not like... it's not considered taxable income, it's not considered a wages, it's considered like a... it's considered like difficulty of care payment. But at the same time, I could also see Social Security saying, well, if you could provide those services to your child, why can't you go out and provide them to somebody else? And then you could work. So I don't really want to answer that question because I don't know what the legal answer is, but I can... I can see where the arguments are on both sides. Okay. So we talked about what would happen if the parent wanted to be the child's provider. But what if if the parent can't be the child's provider? So there's a couple of things to think about. So first, the child's hours belong to the child. So if the parent can't be the provider, that should not affect the child's hours. It just means that somebody else would need to be hired to do the hours. The child's hours follow the child. And it's not... regardless of who's providing the hours, there's another situation where if there's one provider and the parent is receiving hours and the child is receiving hours, but they're both receiving hours for similar things, sometimes unless it's protective supervision, which they no longer do this, sometimes they will prorate the the hours. If multiple people in the house are recipients who are benefiting from the task and the one provider is doing it, they might prorate the hours but protective supervision, they stopped operating that. So that's assessed for each individual in the house. So that's a few different ways of answering that question. I hope that answers the question.

And by the way, Lisa always goes in a little later, she'll go into the chat and get to any questions that we didn't get to live during the presentation today. So she'll go back through and if anything she feels wasn't answered, she'll go back through and herself answer those in the chat.

If I can find an answer because remember I can't give legal... like if there was an answer I wanted to throw...

There was... there was one question that we received with RSVPs, and it's not actually a question, but I thought it was something really important because it's, again, one of those things that you might hear a caseworker say, and she said, they always deny me because my daughter is not in diapers, but she's unaware of danger. So I just wanted you, again, to maybe sort of underscore the fact that sometimes, like, you know, and we've heard this over and over, families just kind of... there's just sort of a blanket statement like that.

Those are two completely different services. There are plenty of children who are not physically impaired but who are cognitively impaired. There are plenty of children who are cognitively impaired who are still able to be toilet trained. And that has nothing to do with whether or not they can assess the danger before they act.

Those are two... It's... they're just... they're two completely different things. Right.

And then this question came up, and I know you touched on obviously, the new rules around parent providers and working. This parent asked... several people asked if they could have multiple children under IHSS and can one parent be the provider for both children.

So this... Yes, there can be multiple children who receive IHSS in the household. Yes, a parent could be a provider for both of them. However, if you don't have an... if you only have one recipient, your max hours are your total hours divided... max weekly hours or total monthly hours divided by four and for a person with the maximum hours that comes out to like 70 and three quarters of an hour per week. You're not going to bill that much every week. But that's the maximum you can get without a violation. If you have two or more recipients, your max weekly is 66 hours period. So unless you have an exemption, I don't have on hand the requirements for an exemption, but typically the exemption is you... the services have to be provided by somebody who lives in the home or you have tried very hard to find a provider, but you live in a rural area and there just aren't any providers or you haven't been able to find a provider who speaks the same language as your child. Those are some areas where you might be able to get an exemption and then you're allowed to bill up to 90 hours a week. But now that there's no longer a requirement for the other parent to be unavailable, the other parent could do some of the hours too. Even if they work full time, they can do some of the hours on the weekends and at night when they're home. So... but if there's more hours than that than either one of you can provide you're going to have to find another provider outside. And then that... if you have the exemption and then you still have to find another provider that can get a little tricky. So yeah, I hope that answers that question.

Okay. And just for for the last question, this is a clarification, and I think I saw it come up from several parents. Cynthia had asked just to confirm wait times also count for specialty appointments like neurology, GI, etc.. Yeah. Just wanted to make that clear because I know you mentioned therapy.

And the example of therapy was an example where you might not get a wait time. Right. But if you have to go in and be involved and be part of the appointment as you would in a specialty appointment, then you should be able to get wait time as well. Or accompaniment.

Yeah, perfect. And Lisa, is there any other piece of advice like, you know, your... kind of your last piece of advice, at least for this segment about IHSS for families with kids five or under that you haven't already covered?

I mean it's... it's really just everything and I've already said it's you know like watch that... watch the video again like becoming familiar with the terms and concepts like this. This can be a really intimidating process. And when a stranger comes into your home and just starts throwing all these terms at you and saying, "We don't do this, we don't do that, that's just not a thing." You know, my answer when they say that's not a thing is, "Oh, can I get a copy of that policy in writing?" But it helps. It helps us be less intimidating if you have just a foundational understanding of some of the terms and concepts that go into this program so that it's not just overwhelming and you know how to respond. And even if you don't know how to respond, you maybe have an idea that what they've said isn't right or you know how to ask the right questions. So just familiarize yourself with the concepts before you have the home visit, before you have a hearing, anything.




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