Mapping the Journey from 0-5: In-Home Supportive Services

Have you been told you can't get In-Home Support Services (IHSS) for your child between the ages of 0-5? Confused about what your child may qualify for? On July 14, we sat down with Undivided's Public Benefits Specialist Lisa Concoff Kronbeck to hear the details about applying for IHSS with a child under age 5.

Note that the requirements for being a parent provider changed as of February 2024. You can see this article for more details, or watch In-Home Supportive Services for Ages 0-5 below for the latest information!

See below for the transcript of our original event on July 14. For a transcript of our new video with the latest updates, check out In-Home Supportive Services for Ages 0-5!

Lindsay Crain
Public Benefits Specialist Lisa Concoff Kronbeck has both personal and professional experience in the disability community. Her eight-year-old daughter Leah was born two months early with Down syndrome, esophageal atresia, congenital diaphragmatic hernia, and congenital heart defects. She relies on a G Tube, Daniel Tiger cartoons, and Sesame Street for daily sustenance. Sounds like a good diet, Leah. Before Leah was born, Lisa was an advocate at a disability rights nonprofit working primarily in the public benefits unit with services like Medi0Cal, IHSS, and Social Security Disability Insurance. Lisa also identifies as a person with disabilities. Welcome, Lisa.

Lisa Concoff Cronbeck
Thank you, Lindsay.

All right. So let's get started. All of the information here is publicly available information and is not legal advice. We're here to help you navigate the system and save you time and get you the best information possible. So what I've done is take a lot of really complicated information that's publicly available, try to make it understandable, and break it down so that you guys can really get a grasp on what's going on here. If you need legal advice, we recommend that you consult with an attorney.

The other thing is, there's a lot of information coming out, you are not going to remember everything here. But that's not our goal. You don't need to remember everything. The goal is for you to feel more comfortable and to gain some familiarity and confidence with this information going forward. So you don't need to sit down and write out an outline of everything you remember. But when the caseworker brings out a certain form, you're gonna think, “Oh, I remember, Lisa discussed this form, and I remember what what she said about it.” And when this caseworker brings up certain terms, they'll be more familiar to you, so it's not all new as you go through the process of application.

What is the In-Home Supportive Services program? IHSS is a Medi-Cal program that provides home-based personal care and related services so that people with disabilities can remain safely at home. So we're going to break this down in this presentation. Now Medi-Cal, we're gonna talk about Medi-Cal, we're going to talk about what the personal care and related services are, and talk about who is a person with disabilities for this program, and we're gonna talk about what it means to remain safely at home. For the purpose of this conversation, we're going to flip these two and talk about disability first. Okay, so let's start with Medi-Cal. As a person with disabilities, there are four primary ways of qualifying for Medi-Cal. One is enrollment based solely on household income, so some families are going to qualify solely based on economic need. Another way is if your child is receiving SSI, which is Supplemental Security Income, also a need based program. An application for SSI is automatically also an application for Medi-Cal.

There are some programs for people with disabilities that assess financial need using slightly different criteria from the regular programs. These may or may not entail a monthly share of costs, which is an amount that you have to pay each month, kind of like a monthly deductible. Now the program that we're going to talk about here mostly is the institutional deeming waiver for individuals with developmental disabilities who are Regional Center clients. And this is a program that allows kids with disabilities who qualify for the waiver to enroll without regard to parental household income. So let's talk about that. So Medi-Cal, generally speaking, is a needs-based program. So if you apply based on economic need, generally speaking, the program is going to deem most of that income to the child. So they're going to calculate the child's income based on what the parents have, and leave a tiny bit for the parents to live on, and the rest is considered the child's income.

When a person lives in an institution, for example a nursing home or hospital—for example, my daughter lived in the NICU for her first seven months—when a child is in a nursing home or hospital, only their own income and resources can be counted. Now, as many of us know, historically, it was not uncommon for children with developmental disabilities to be institutionalized, either at birth, if they had a birth diagnosis, or when their disabilities began to manifest. And, of course, major movements have come around to try to keep kids and adults with disabilities out of institutions. And part of that process of keeping people with disabilities out of institutions is to fund those home and community based services that they would be getting in the institutions at home for all the therapies and all the care that they would be getting in an institution, they get at home. And so the way that they do that is if a child qualifies for the waiver, and I'll explain what the qualifications are, it means they technically would qualify to go into an institution for people with developmental disabilities, but we want to keep them at home so we're going to treat them as if they're already there for the purpose of calculating their financial needs. So we're only going to look at the child's income and resources and not the parents’.

So if your child meets the criteria, then they're not going to count. So if your child has income or resources in their name, that could interfere. But if it's only about parental income, they're not going to count it.

So the institutional deeming waiver, first of all, the child must be a Regional Center client.

They need to live at home with their family, have a valid Social Security number, and they need to not be eligible for Medi-Cal with no share of costs on a financial basis. So if your child is eligible for Medi-Cal, but there is a share of costs, then they can qualify for the waiver. But if you qualify based on household income from an account with no share of costs, then there's no need to enroll in the waiver because you already qualify. They need to be diagnosed with a developmental disability, and this is important because a lot of children receiving Regional Center services are under three. And the criteria for the under three program at the Regional Centers that they have to be at risk of developmental delay.

You do have to actually have a diagnosis in order to qualify, and you need to have two or more qualifying conditions in the areas of self-help, motor functioning, social emotional functioning, special health care conditions, or extensive medical needs. And you need to be receiving at least one funded Regional Center Service per year and use it at least once per year. A lot of families will fill this through respite. But some who have higher income (when we're not in a pandemic), they have a family cost sharing program through the Regional Center. And so if you have an expected 100% cost sharing, then you may need to use a different service to meet that eligibility criteria. This will be relevant for some of you here. A lot of times, if you ask to enroll your child in the waiver and your child is under three, the service coordinators think that they have to wait until three before they can go on the waiver. They just think that's the rule because, generally speaking, it is. However, if your child has significant medical care needs, and they already have a diagnosis that you know they're going to continue to qualify for Regional Center services after age three, you can ask that your child be assessed for the waiver anyway if your child has at least two qualifying medical conditions. And the reason for that is because if you remember some of those self-help, motor functioning, social emotional functioning, they don't expect a lot from kids under three, especially in self-help.

So you’re really going to focus on special health care conditions or extensive medical needs. And so if they have at least two qualifying needs in those areas, then they may still be eligible for the waiver. And the important thing is that you have to know that they're going to continue to qualify for Regional Center services accurately.

So that is the institutional deeming waiver. The way that you request that is to talk to your service coordinator at the Regional Center, and they can get the process started for you. The referral for that waiver has to come from the Regional Center. All right. So we've talked about Medi-Cal. Now let's talk about who are people with disabilities for this program.

The important thing to understand for kids with disabilities is that you are only going to get time awarded for services that you provide that fall within the services IHSS funds that are above and beyond what a parent would typically be expected to provide to a child of the same age who is typically developing. So the classic example I always give is if you have a two year old, you're not going to get time for toileting and diapering because a lot of typically developing two year olds are not fully potty trained. But if you have a six or seven year old who's still in diapers because of their disability, then you'll start to see hours and even for four or five years old, you'll start to see hours for toileting and diapering.

The other thing is that hours are awarded based on need, not on diagnosis. So I see a lot of parents saying, “Oh, my child was just diagnosed with XY and Z. Does that mean that they're eligible for IHSS?” The issue is not what their diagnosis is; the issue is what their specific needs are and their limitations. So you need to be prepared to discuss your child's specific needs and limitations for each of the tasks that we're going to talk about. The other thing is that you need to be willing to talk about your child's needs and limitations. I know it can be really tempting to want to talk about their strengths and how far they've come and how much they've accomplished. But caseworkers are going to take that at face value. And they're going to take you literally, and when you say your child has come so far and you're so proud of them, they're gonna write down “can do this, can do that.”. Honestly, sometimes they their role is to try to figure out what your child can do and they are going to take you literally, so you need to be willing to to share your child's needs and limitations.

So one parent’s advice that they received that they felt was really helpful was when discussing your child's limitations, think about what they can and can't do on their worst days. And that's not like the one isolated day that was just the absolute worst. But like, you know, our kids have better days, and they have worse days. So their limitations here are going to be based on those harder days. So that's what you should be sharing with the caseworker.

All right, so we're going to talk about what the specific personal care and related services are. And there's two I know that everyone has questions about, which are protective supervision and paramedical services. We're going to talk about those in the fourth section, which is remain safely at home. So right now we're going to talk about the other services that IHSS will fund.

So which services will IHSS provide? So broadly speaking, in the whole program, there is housework, non-medical personal care and related services, accompany to medical appointments, protective supervision, paramedical services, and yard hazard abatement. You're not gonna get all of that for children because the county in the state expects that parents are going to provide a lot of these services to kids regardless of their disability or ability. So housework is off the table. For non-medical personal care and related services, you can get certain things based on age and need. Accompany to medical appointments, sometimes if you are required to stay because your child may need an IHSS service during the time that you're transporting them at the appointment or leaving, then you can get accompany them to medical appointments if the appointment is based on the disability. So you can’t get accompaniment to regular checkups, but therapy appointments, specialists that are about the disability, you can get accompaniment to those. And then protective supervision and paramedical services.

Okay, so we’ve got personal care services. So these are generally the activities of daily living. So we got the personal care services, which is walking, hygiene, dressing, bowel and bladder care, feeding, transfer, which is kind of in and out of seats—on and off, on and off the couch, away from the table, in the car seat. And respiration, which is oxygen and nebulizer treatments and things along those lines. And then we have related services, laundry, grocery shopping, errands, meal prep and meal cleanup. Those services, you're generally going to have to document extraordinary need in order to get those because the age requirements are a little bit higher for these. The county doesn't expect kids to do, for example, their laundry until they're like 14 or 15. Don't tell your kids that, like teach them how to do it earlier if they can. But the county really has low expectations of kids helping out around the house and doing stuff like that. And so you need to document extraordinary need for that. And we will talk about that.

So they're based on your child's age as well as the level of assistance needed. You are not going to be asked to assign a rate to your child's skills in these areas. But it's kind of helpful to know when you go into the process, how the caseworkers can assess it. So we're going to talk a little bit about their ranking system. Again, you're not going to be asked to assign a rank number to these. But it's helpful for you to understand what each rank means so that you can talk so that you can talk appropriately about your child's needs. So rank one, we're going to look at a chart. And usually rank one means that the client can do it independently. On the chart that we're going to see for children, many of those tasks are going to be assigned to rank one because the parent would be expected to perform the task for the child anyway, regardless of disability. So that's going to be like housework, and laundry, and running errands, things like that. And you're going to see on the chart that the ages differ for each specific task.

For example, toilet training, you know, one, two, and three is assigned one because parents change babies’ diapers. But then once they turn four, it's rank one through five. So rank one through five for tasks that a child would be expected to do independently without a disability. They're going to rank that, and we're going to talk about what each rank one through five means. Rank six means that all functions of the tasks are met by paramedical services, which we will also discuss later. For example, under diapering, if you have a baby who has a colostomy bag or an ostomy bag or needs catheterization, toileting can be counted under paramedical services, and so you can get time for that. Whereas if it was a child who was using diapers or using the potty, you would not get time at that early age. Or again, meal prep. If you're preparing food for a child has a choking risk, then meal prep may count as a paramedical service. So this is the chart and we're going to come back to this, I just want to show you as I'm talking about the different ranks.

You can see under housework, it's always going to be a one, they're going to expect the parents to do. And again, don't tell your kids that. But they're going to expect that parents are always going to do housework. For laundry and shopping and errands, you've got to demonstrate extraordinary need. If your child has very specific dietary restrictions, and it takes you an extra two hours a week to shop because of their dietary restrictions, keep track of that. It's not guaranteed that you'll get it, but keep track of it if your child frequently wets the bed, or if they have a G tube—my child has a G tube, and frequently there are incidents with the G Tube leaking. If you have incidents like that where you have to do extra laundry constantly, you may demonstrate extraordinary need for laundry. You can see in these columns how ambulation starts at five, they start assessing hygiene, they start expecting them to take care of their own hygiene at about eight, dressing about five, transfer one.

And let's see bowel and bladder care. For zero to three, it's one or six. So it's either one, the parent was expected to do it, or six, which is paramedical services. So rank one means they can perform the function completely without human assistance, and it might be a little hard, but they can do it totally themselves. They will not award hours for a rank of one. Rank two means that they can perform the function with verbal assistance, but no hands-on assistance. Sometimes they need a little reminding, but they don't need you to intervene. Rank three means they can perform the function with some assistance, some hands-on direct physical assistance. Rank four means they can only perform it with substantial human assistance. And rank five means that they rely completely on somebody else in order to get the task done.

So we're not going to look too much at these, but these are the Vineland social maturity scale and the developmental guide, where you can look at these when you get the handouts. But this is just to give you an idea of where they're getting the information about what age they expect a child to be. So this is the Vineland social maturity scale, this is their developmental guide. Again, you can look over this later. But this is just so you know, kind of where they're getting their ideas about how old the child should be.

So let's get to the the topics that I know a lot of people have questions about, which are paramedical services and protective supervision. What are paramedical services? Paramedical services are services that are ordered and directed by your child's doctor or other medical licensed medical provider. It doesn't mean they're there looking over your shoulder to do it, but they've given you directions about how often to do it and for how long. So some examples G tube feeds, checking blood sugar, if you have to give enemas or depositories, stoma and wound care monitoring. So if you need to check their blood oxygen or their pulse oximetry, or if you need to check their breathing for need of rescue inhalers, checking glucose, and anything else also that requires judgment based on the training that you've received from a licensed healthcare professional. So if it's just like scheduled, every five minutes, or every certain number of hours, depending on whether it's on this list, if it's something that you have to use your judgement about, that can be a related task aside from things along these lines.

And this can also include home therapy programs, preparation and administration of medications. Now breathing treatments, sectioning, oxygen administration, those should all be included on the paramedical services form. But depending on how much you're helping versus helping the child do it, they may put it under respiration versus paramedical services, but you should put anything relating to respiration, you should still put it on the permanent local services form. This is the paramedical services form. I know it's probably a little bit hard to read, that link is gonna go out so that you guys can look at it independently.

The main thing that you want to see on this form is that this is not a big space if you have a child who is medically complex. So one thing that I find really helpful, and I know a lot of parents do this, is to create a separate list or spreadsheet for the doctor to complete and sign. And that's important. You can create a list of all of the things you're doing that are paramedical services and have the doctor write on that list or spreadsheet the frequency, which is the number of times per day or week and how long each task should take from start to finish. And that is from the time that you stand up to the time you sit down. Like don't go into the kitchen and get everything ready and then start the timer. No, you want to include everything that you're doing as part of that task. So have the doctor put in frequency and duration and have the doctor sign, put on the paramedical services form “see attachment” and have the doctor sign every page of the attachment as well so that they know that the doctor has seen the list.

And the doctor also needs to indicate how long the service is expected to last. So they could write “this is good for one year, this is good for two years,” they might write “this is indefinite,” you're gonna have to renew these forms every year or two depending on what the doctor writes. So they will ask you to get new forms just to make sure that they're up to date. But again, have the doctor sign this form and each page of the attachment.

A doctor might say, “Oh, the average time for this task is X, Y, or Z” and that's what they're going to put, right. But you know your child, and you know what they have a hard time cooperating with. If they won't sit still because of a breathing treatment, or venting of a G Tube or if it's harder to to chase them down to get them to sit to do something like that. Or, for example, if a child is not able to communicate symptoms of chronic health issues, and that means that you need to check their blood sugar more often, or you need to check something else more often because they can't communicate their symptoms, make sure that your doctor knows that. Make sure that they take that into account when they're assessing how long something should take or how often something has to be done.

If your child's therapists, PT, OT, or speech has given you a written home plan to help you reinforce skills outside of session, you should ensure that that written plan also includes specific instructions on frequency, which is how often, and duration, which is how for how long.

I know that a lot of us kind of integrate those things throughout our day. It just becomes part of our daily practice in our life. And it's really hard to quantify how much time we're spending, reinforcing all the things that our therapists work on. But this is a way to help quantify that, is that if your therapist has given you a written home plan, you can include that in paramedical services. And what I usually do is have the doctor right “home therapy plan as directed by PT, OT or speech” depending on who it is, so that it's on the paramedical services form and then attach a copy of that written plan.

So protective supervision. 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, or memory.

The recipient’s actions have to be non-self-directing, and we'll talk about what that means. And the risk of harm to self or others must be due to their severe cognitive impairment. Non-self-direction is an inability due to mental impairment or mental illness for individuals to assess danger and the risk of harm, which means that that they're most likely to engage in potentially dangerous activities that may cause self-harm. And that's because they are not able to assess the consequences of their actions.

What is not protective supervision? So keeping that in mind, keeping the definition of non-self-direction and cognitive impairment in mind, you cannot get protective supervision to monitor in anticipation of a spontaneous medical emergency. So if your child has seizures, and you never know when they're gonna happen, you cannot get protective supervision to watch for seizures. However, there are two somewhat exceptions to that. The first one is that you can't get protective supervision, but you can get paramedical services service hours for intermittent monitoring. Again, like if you have to check their blood sugar more often, you can request paramedical services for that rather than protective supervision.

The other, which is really more of an exception, is that if your child is likely to create a medical emergency because of their cognitive impairments, for example, if they frequently remove their trach, or their G Tube or their IV port, because they don't understand the consequences of removing that, they don't understand that that's dangerous. I mean, I know my little girl thought “Ooh, a toy!” And like she was constant, she still does, you know, polling at the G tube and doesn't understand what's going to happen if that G tube comes out of the stoma. That's a situation when you can get protective supervision to monitor for a medical emergency because that emergency is being caused by your child's lack of awareness about what is going to happen if they continue to pull on that tube or that IV. And if you have a child who gets themselves into that situation, you already know it, you're nodding. You're saying, “Oh yeah, I get that.” So document that. Make sure that your doctor is aware of it. You know that you have to have your eyes on your child at all time because of that, so make sure that the doctor knows too and make sure that that's on the form.

You cannot get protective supervision for intentional self-harm or aggressive behavior. I mean, that pretty much speaks for itself. Now, intentional self-harm versus versus self-harm, I mean, it can be a tricky line. But the bottom line is they have to not understand that they can hurt themselves by what they're doing. So that's what non-self-directing is, they don't understand that if they keep doing this thing that they want to do, because, you know, they intentionally want to climb the drawer, but they don't understand that the dresser could tip over, right? Like, they can't understand the potential consequences of what they're doing. The other thing is you cannot get protective supervision for damage to property, as opposed to physical harm to self or others, if they're just breaking stuff, that does not merit protective supervision. If they're breaking stuff because they don't understand that they can then walk on the glass and cut themselves, that's another story. But if it's just that they're breaking things, that is not enough.

This is the protective supervision form. You should talk to your child's doctor before they fill this out. Most advocates advise that you prepare a log of your child's potentially dangerous non-self-directing behavior. And that is to provide to the IHSS cage caseworker, but also to provide to your doctor because your doctor is not there with you 24/7. Depending on how much you talk to them, they might not be aware of how much supervision your child needs. So make sure they are aware before they fill this form out. And when you make the log, don't just write down every time your child hurts themselves, but write down every time you've stopped your child from hurting themselves because of non-self-directing behavior. You want to show how often you have to intervene to stop that from happening. Again, you're not going to get it for intentional self harm, intentional aggression, or property damage.

So with regard to these boxes, memory orientation and judgment, Disability Rights California has a publication that is linked in this presentation, and they say a lot of times the caseworker will say, if all three boxes are not checked as severe, then you don't get it. And if your child has severe deficits in all of these areas, it really should be marked severe. But they cannot just use the checkmarks as the basis for the eligibility. You have a long list of incidents, and it just says moderate, again, it's complicated. But it cannot be just based on the checkboxes, they have to look at the whole of the application, including what the specific things are that you're trying to avoid.

When you apply for protective supervision, you're also going to get this 24 hours a day coverage plan. This is not a behavior log. It does not require a lot of detail. You just need to show that you have made arrangements for somebody to have eyes on your child at all times. So for example, if your child is in school, you write “8:00 to 3:00, child's in school, has one to one aide, the rest of the time parent is providing protective supervision.” Or if they have a lot of different therapies and stuff, you could just say they're supervised by the parent at all times, except during school hours where there's a one to one aide, and then clinical therapies it's one to one as well. You don't need to have a whole block of text there. It's really, really basic. You just need to show that somebody is providing supervision at all times. If you don't have time to create a behavior log, say you're here but you're going to your doctor tomorrow, or you're meeting with the caseworker tomorrow, what can you do to make sure that they understand what you're dealing with?

One thing you could do is just sit down and make a list of every single thing that you can think of when your child has been injured due to their lack of judgment, orientation, or memory, or every situation when you've had to intervene. Another way of approaching this could be to write out a schedule of your typical day. And at each point along the way, indicate the various ways in which your child, if unsupervised, could come across dangerous situations because of their lack of judgment, orientation, and memory. And once you sit down and you think about every single spot in your day, you'll be able to write out what you know. And include include nighttime to, you know, if your child gets up in the middle of the night and you have to able to intervene when your child is up all night, make sure that you put that in there too.

And we're gonna get to some of the frequently asked questions that come up with IHSS. So we got what is the monthly maximum? Can I be my child’s provider? What if you get denied? And what if my caseworker tells me _?, and there are so many things that that caseworker might tell you, and you're just like, “Is that right?”

So we'll answer some of those right now.

Monthly maximum. So the maximum allowable IHSS hours depend on whether your child is classified as severely impaired or non-severely impaired. Severely impaired means—and they're not making a judgment call about disability, it's solely based on what they're eligible for, for IHSS. And again, that is based on their age. And so like, you know that your child has severe impairments, but if their age is not in that specific range, they're still not going to get the hours for that. So it means that a recipient is authorized for 20 or more hours per week of non-medical personal services, paramedical services. And so for children who are classified as severely impaired, the max hours are 283 per month.

If your documented need goes above that, they should still put it on the Notice of Action. Like when you get the letter in the mail that says the hours that you got, there's a section for unmet need, and it should say like “There are X hours of unmet needs.” So if by some miracle they ever raised the limits for maximum hours, then you have it documented there that there are needs that are not being met.

Non-severely impaired recipients who are not authorized for 20 more hours will get up to 195 hours per month. If your child is awarded protective supervision, you'll get your monthly hours plus 195 for protective supervision.

Can I be my child's IHSS provider? In some circumstances. A parent can be paid as the IHSS provider only if the parent is prevented from working full time, and that varies. So typically, it's 40 hours a week. But if your job classifies 30 hours a week as full time or 35 hours a week is full time, that's full time. So understand how your job classifies full-time work. So prevented from working full time due to the child's extraordinary needs, and there is not another suitable provider available with a legal obligation to care for the child. And usually that's going to be the other parent. In a two-parent household, the non-provider parents, so that's the parent who's not going to be paid to provide the services, has to be unavailable due to full time work, full time enrollment in college, or vocational training, or they have a disability and they're not able to provide care.

Note: the requirements for being a parent provider changed as of February 2024 after this recording. You can see this article for updates.

Parent providers need to be eligible to work in the US and have to do a background check and fingerprinting and an orientation. There is a live scan fee for that requirement as well. You have to go and do fingerprinting.

Who else can be my child's IHSS provider? If both parents work full time or otherwise considered to be unavailable or ineligible to be paid, you can have a family member or a family friend become authorized to provide the services. You can also go through an agency. But I know a lot of us would prefer to have somebody that we know and trust taking care of our child. Could be a grandparent or an adult sibling. As with parent providers, third party providers have to go through all the same requirements.

If you need help finding a provider, you can call PASC, which is the Personal Assistance Services Council. And they have a provider registry. They also have a backup registry for emergency situations where your usual provider is not available and your child needs a backup provider. So you can contact them.

What if IHSS tries to reduce or terminate hours? Okay, so the very first thing to remember if you are already receiving IHSS, and you get a notice in the mail saying that they want to cut your hours or terminate IHSS services, you need to file your appeal within 10 days of receiving that Notice of Action and request on the form that you get aid paid pending appeal. So that means that they continue to provide aid at the current level until you get through the appeal process.

You can file your appeal by fax, I believe you can do it online now. And you can do it by phone. Personally, I would prefer that things be in writing. But that's just me, I always like to have a document showing that I filed it. Just be aware that if you're appealing because you think your child didn't get enough hours and you want them to get more, the county can either increase or decrease the hours on appeal. So just be aware of that. Sometimes when you file, like if you're denied on initial assessment, sometimes the county will offer you a reassessment in exchange for a conditional withdrawal. And that means you're conditionally withdrawing the appeal pending the reassessment. That's, you know, if you feel like the social worker or the caseworker, they're not all social workers. If you feel like the caseworker didn't listen to you and didn't didn't take your concerns into account.

If you agree to a conditional withdrawal, review anything that you've signed to make sure that the appeal is going to pick up where it left off if you disagree with the reassessment.

And you may want to ask an advocate or attorney before you sign anything to make sure that those original repeated appeal rights are preserved.

IHSS retroactive pay generally goes back to the day that you applied, not the day that services are approved. And that's why you want to make sure that if you do that conditional withdrawal, that if you reinstated, that it goes continues on the same claim going back to the first day that you applied. I have heard of caseworkers trying to convince people “You know what, don't even bother with the appeal, just reapply.” Don't do that.

That will start the clock over. And if you feel very strongly that your child does qualify and you feel like you want to go to a hearing and, based on the current application, continue to go to the hearing because if you just drop your appeal and reapply, it's going to be a new application date. And if you are eligible for that retroactive pay, that's not going to happen anymore.

You have a right to reinstate your appeal with the original date and request a fair hearing in front of an administrative law judge. If you need help with the fair hearing, you can hire an attorney or advocate.

There are professional IHSS advocacy organizations that will often take a percentage of the retroactive payment as their compensation. And they generally have a lot of practical experience in dealing with frequent objections by the county. You can also contact some nonprofit legal organizations like Disability Rights California.

OCR Office of Clients Rights Advocacy, Disability Rights Legal Center, Public Counsel, or others. Some of those organizations are going to have income requirements in order to provide direct assistance. But if they can't help you, they often have a referral list. If your child is a Regional Center client, you may wish to start with the Office of Clients Rights Advocacy because they their goal is to serve Regional Center consumers. And even if they can't provide direct representation, sometimes they do sometimes they can't, they can at least give you advice on self advocacy, or advocacy for your child.

So let's talk about some of these common misstatements. One of the things we hear a lot, and this even sometimes happens when you call to apply or when you initially apply is “IHSS is not for kids your age,” or “We don't give hours for that because it's your responsibility as a parent,” or “All kids your child's age requires supervision. This is what the rules say.” First of all, there is no minimum age to receive IHSS. The primary question is whether your child's needs in the assessed task exceed those of a typically developing child. There is an all county letter that is linked in this presentation that specifically says number one, they shouldn't assume. If a service is compensable. If a child is eligible for a certain service, then they shouldn't assume that the parent is willing to provide that service voluntarily. If the child's needs exceed those of a typically developing child and it could be paid by IHSS, they shouldn't assume that anyone's going to provide it voluntarily.

Also, the social worker, the county worker, has to review the child's mental functioning on an individualized basis, and not presume that any child has a score of one, which is again that they can't get hours because they’re where a typically developing child would be, and a child must not be denied protective supervision based solely on age. Now, that's not to say that a young child can't be denied for protective supervision, you have to show that they need more supervision than a typically developing child. But if you successfully show that with your behavior logs and you're keeping track of all the times that you have to intervene, and you're able to successfully show that your child needs a lot more supervision than a typically developing child of the same age, then they can't deny protective supervision just because your child is young. So really, really focus a lot on developing that log and keeping track of your child's behaviors.

Another thing that I have heard some parents say is that their caseworker told them, “You can't be paid in the evening and on weekends, because the other parent is home, and they can provide care during that time.” No, a parent who is employed full time is not considered a suitable provider if they are only available during non-work hours. So even if they're home, they're still considered unavailable. They're not a suitable provider, because they work full time. And they're only home during those non-work hours. So you can get paid for services that are provided during the time that they're home. And this all county letter, again, I've linked to these all county letters, because if your server if your caseworker tells you these things, you can go print up this all county letter and say, “I know you said this but here's this all county letter that says this exact opposite thing.” I mean, you can say “You can review this, take it to your supervisor.” These all county letters provide guidance from the state on how to operate this program. So the all county letters can be really helpful for counter contradicting the things that the caseworker says that are not necessarily true. So again, you can be paid for IHSS hours that are performed while the other parent is there if they work full time.

Now, this is one of those things where, you know, even I've been doing this for a while, and even so, they put a form in front of me the last time I had an in-home assessment, and I said, “I have never seen this form before. What do I do with this? This does not feel right.” So there's a form called the Voluntary Services form. And they basically say, like, oh, we need you to provide a list of all those people who are providing voluntary care for your child without pay. And they say, Oh, we just want to know who's providing care. If a service is compensable, which means if your child is eligible for someone to be paid for that service, for IHSS, you do not have to fill out that form. And if they pressure you to fill out that form, you can say on the form, nobody's volunteering to provide services which are otherwise compensable. And that's because, again, in that all county letter, they said you should not assume that anybody is going to provide voluntarily services that are otherwise compensable, even if it's a parent or guardian. If they qualify for that service by IHSS, as IHSS could fund it, don't assume that a parent is going to provide it voluntarily. They are eligible to be paid for that.

Like I said, I had never seen this form before, and they tried to pull this one over on me, and I asked other folks who have been doing this for a long time too, and I said this doesn't feel right. What should I do? And this was the advice that I got.