Undivided Resources
Video
California Public Benefits Explained

California Public Benefits Explained


Published: Jul. 3, 2024Updated: Jul. 11, 2024

Your child with a disability may be eligible for services from Regional Center, Medi-Cal, In-Home Supportive Services (IHSS), California Children’s Services (CCS), Supplemental Security Income (SSI), and other government programs in California that help provide funding and care. Whether you’re new to these programs or you want to get more out of them, Undivided Public Benefits Specialist Lisa Concoff Kronbeck is here to walk you through it all!

For more information about California Public Benefits, check out event recap article: 5 California Public Benefits Your Child May Be Eligible For

Full event transcript

Lindsay

Hello, everyone, and welcome to Undivided Live. Thanks for joining us for another session of our summer training series. Today we are going to talk about a variety of public benefits that can help families like ours who are raising kids with disabilities. And I know I don't have to tell you, but it is beyond frustrating that so many parents are misinformed or never even hear about programs that can financially, medically, or logistically support our families, like families who didn't realize their child was eligible for regional center or IHSS until they entered middle school.

We talk to families like that every day, or families who were told that Medi-Cal is only income based, or that there's no use for it. If they have private insurance. Spoiler alert neither of those statements are true. Lisa will address both of those myths today, or for programs like California Children's Services or Social Security. If families have even heard of them, they have no idea if their kids qualify or where to start if they do.

And does having any of these benefits affect our ability to qualify for the other benefits? Well, that's what today is all about. What is available? Are we eligible? How do we start? Because as we all know, you don't know what you don't know. And we want everyone to be in the know. So get ready for training because you have just entered undivided public benefits boot camp.

But no push ups required, right, Lisa? Okay, good. Otherwise I'm out. So instead, we are going to do an overview of regional Center Medi-Cal IHS as and SSI. If you have no idea what these acronyms stand for or what I just said, never fear. Our amazing Public benefit Specialist, Lisa Kron is here to lay it out for us.

We're going to cover the essentials of these programs and most importantly, how they can support your family. So Lisa educates parents about government programs that support our kids and families, and she actually loves walking people through these complex systems. So we are thrilled to have her with us today and every day. She is also the mom of a kiddo with Down's Syndrome and is herself an individual with disabilities.

Hello, Lisa. Welcome back. Thank you. And normally our live chats are more of a conversation back and forth with questions throughout, but our summer training series utilizes a more traditional slideshow format to cover a lot of details in a structured way in about an hour. So we want you to have visual touch points that you can revisit.

It's bootcamp time. So Lisa, whip us into shape.

Lisa

All right, let's do this. Let's just get the presentation up. Okay. So public benefits 101. So a couple of things to keep in mind. be aware that the information that we're presenting here is publicly available information and does not constitute legal advice. We are here to help you navigate the system and save you time, 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. Okay. There's a lot of information coming up in this presentation, and it's just the surface. Like I could there could be an hour long presentation on each of these, but they're there. Just do not feel like you have to memorize every single detail.

The goal here is for you to feel more comfortable navigating the systems and to get some familiarity with the terminology so that you have confidence going forward to advocate for your child. So the programs that we're going to discuss today are Regional Center, Medi-Cal, in-home Supportive Services known as IHS, Social Security, and California Children's Services. Like I said, each of these could be its own presentation.

Today we'll just kind of talk about them in broad terms. So let's start with the regional center. What is a regional center? The regional centers are a statewide network of, independently run nonprofit agencies. There are 21 of them throughout the state of California. And their responsibility is to provide services and supports to people with developmental disabilities under the Lanterman Developmental Disabilities Act, usually just referred to as the Lanterman Act.

The California Department of Developmental Services, DDS oversees the provision of services. The regional center also provides early intervention services to children ages 0 to 3 under the Idea, who are at risk of or diagnosed with developmental delay. Regional center assignment is based on ZIP code. So who is eligible for regional center services? Before age three, children receive their early intervention services through the Early Start program, which is regulated as I said before by part C of the Individuals with Disabilities Education Act, which is a federal law. and that's the same that's the same act that governs special ed, for school age children. Services are provided to children who have a developmental delay of at least 25% in one or more of these areas cognitive, receptive or expressive communication, social, emotional, adaptive or physical and motor development, including vision, vision, hearing, or if they have an established risk of known etiology with a high probability of delay in development.

For example, down syndrome and other similar genetic disorders, or if they're considered at high risk of having substantial developmental disability due to other biomedical risk factors. For example, if they're if they're super premature, if they have a really low birth weight, but, if they have a lot of medical procedures when their children, and they're under anesthesia for a long time, or if they're on a ventilator for a long time, prenatal exposure to substances, infantile seizures, anything where there's.

We already know that if you if you have this, this factor going on, that there's a pretty high risk of some sort of developmental delay. So after age three, children retain their eligibility for services only if they have a diagnosed developmental disability that constitutes a substantial disability. So let's talk about what that means. So developmental disability under California law.

And it's different for federal law. And that's a whole other conversation. But then in California it means a disability that originates before an individual turns 18 continues or can be expected to continue indefinitely and constitutes a substantial disability. The qualifying conditions include intellectual disability, cerebral palsy, epilepsy, autism, and what we call the fifth category, which is disabling conditions that are closely related to intellectual disability or require similar treatment to for individuals with intellectual disability, but are not solely physical in nature.

So what is substantial disability? So when they say it has to constitute a substantial disability, that means significant functional limitations. And three or more of these areas, that you see below, based on an age appropriate basis. So there you got self care, receptive and expressive language learning, mobility, self-direction, capacity for independent living and economic self-sufficiency. But of course, for 3 or 4 or 5 year olds, they're not going to be looking at capacity for independent living or economic self-sufficiency.

So these, these elements are going to be based on an age appropriate basis. relative to a typical typically developing child that age. there are some times when a child is turning three and they either don't have a diagnosis yet or they have a diagnosis, but they're only showing developmental delay in two areas. they can qualify for provisional eligibility under the Lanterman Act.

What that means is it's not an extension of early start services. It's you get functionally the same services that you would get under the Lentamente act. but you're eligible provisionally until they turn five. and then they'll reassess and see whether, whether they qualify for full enjoyment eligibility. And because these children are so young, as I said, they take off the economic self-sufficiency and capacity for independent living because they're just looking at these five areas in a more age-appropriate basis.

So what does the regional center provide? So the first thing I have to say, you've probably heard this before. If you've ever interacted with the regional center, they are the pair of last resort. What does that mean? It means that if another agency or entity is responsible for providing that service as an obligation to provide that service, the regional center will only pay once those other services, which they call generic resources, have paid their share.

So generic resources can include private insurance. It might be Medi-Cal, the school district, or other local education agencies. It might be a community program that's available to all children. Sometimes it might be the parents’ responsibility for expenses that they would be expected to have for a child, even if they didn't have a disability. So sometimes there's an expectation that the parents will contribute a certain share, because that's what they would have to pay even if they had a typical, typically developing child.

So what kind of services does the regional center provide for children aged 0 to 3? That's generally classed as status one, which is early start. That can include PT, OT and speech including feeding therapy, that infant stim which is in-home enrichment services. and that later may be centerpiece programming for toddlers. There's behavioral services, parent training and support groups, and sometimes medical equipment and supplies in limited circumstances when there's nobody else with an application and providing them constitutes a financial hardship.

Now, sometimes a child who is enrolled in Early Start needs access, has access to services that are only available under Lanterman and not under early start. For those children, it may be necessary to classify them as status two early before age three. And we'll talk about that a little bit later when we talk about the waiver under Medi-Cal.

Because there are some children who are in Early Start who it's pretty clear that they will continue to be eligible for regional center after they turn three. Okay. So services that you may be able to get under the Lentamente act may include a medical eligibility for the institutional deeming. And we'll talk about that and respite care for free to provide caregivers with a break.

Specialized supervision for children. If parents are working full time and cannot access general daycare services due to the child's needs, social skills classes, behavioral interventions, some educational support that's not available for, through the school district. and assistance in some in some cases, based on financial eligibility, they may be able to assist with insurance co-pays for services that are listed in that IEP.

There may be also potential funding for for durable medical equipment, DME. There are social, recreational and camping services which were restored in June of 2021. transitional services beginning at age 14. And that happens in conjunction with the IEP process. But then potentially other agencies like the Department of Rehabilitation, independent living skills for older kids and adults.

Adult day programs, collaboration with other agencies to provide work and education opportunities. potentially housing and supportive living services for adults. The list goes on and on for adults. I have mostly focused on services for children. so that's all under the traditional model. There's another model called the self-determination program. It's a voluntary alternative to the traditional funding route.

And individuals under this program develop an individualized budget with their regional center service coordinator or an independent facilitator. Traditionally it's based on the last 12 months of expenditures. But you can and you can enter straight into the SDB, into SDP and develop a budget. The main difference is that the family or the individual becomes sort of in charge of choosing the services, choosing the vendors, and paying the vendors.

You use a financial management system, but you don't have to use regional center vendors. and there are other services that are approved that you would not be able to get under the traditional funding model. so that is SDP. And SDP also also comes with a waiver for institutional teaming. And again, we will talk about that right now.

So Medi-Cal, you have probably heard the words Medicaid and Medicare thrown around and discussions about public health insurance programs. Medicare is linked to Social Security, disability insurance and retirement benefits. We're not going to get into Medicare in detail today. Medicaid is a need based health coverage that's linked to household income and in some cases, to disability. So each state runs its own Medicaid program, funded by both state and federal funds, and sometimes has leeway to direct those funds in particular ways, to serve certain populations.

So Medi-Cal is California's version of the federal Medicaid program. So when someone says Medi-Cal, Medicaid, Medi-Cal is California's Medicaid program. So there are four primary ways of qualifying for Medi-Cal as a person with disabilities. The most common one, is enrollment based solely on household income, through modified adjusted gross income. Another avenue is Supplemental Security Income, which is SSI, which is also administered by the Social Security administration.

But it's a separate program from Social Security, disability and retirement. SSI is a need based program. It's based on household income and resources. There's also, like I said, some programs for people with disabilities that are assessed using slightly different criteria. and they might or might not have a monthly share of cost. and then there's the common community based service waivers.

And that's really what we're going to talk about mostly, for, for today's purposes. But I do want to talk quickly about modified adjusted gross income and qualifying based on income. The threshold for children is higher than the threshold for adults. So when you see this percent FPL so federal programs are tied to the federal poverty level.

But since cost of living is higher in different areas around the states, some states put their thresholds for eligibility at a certain percent of the federal poverty level to accommodate for the higher cost of living. So in California, for adults, it's 138% of the federal poverty level. And for children, it's 266%. And I'm going to show you what this means in practice.

and I believe that they're going to put this link in the chat so that you can look at it yourself. The way to read this, and this is on the covered California page and should update every year, is you're going to find your household size. so 1 to 2, let's, let's pick a household of four.

And you're going to scroll across to this is to see if your children are eligible. You can find the column that says 266%, because that's eligibility for children. And scroll across from four. And you can see that 82,992 is the threshold, for eligibility for income based Medi-Cal in California for a family of four, whether the children will be qualified and you can refer to this chart yourself to see where your children fall.

but a lot of families don't qualify based on income. and there's no sort of partial qualification if you are over that amount, you were over that amount. So there's also the HCBS waivers. So Medi-Cal is generally a needs based program. So for kids who live at home, when Medi-Cal assesses their eligibility for programs, they deem most of the parental income and resources to the child.

If you're if you're looking not at the modified adjusted gross income, if you're looking at, you know, some of the other programs for people with disabilities, they're going to take the parental income and deem it to the child, or treat them as if it's as if they have access to that income and resources minus very small maintenance, need allowance for the family.

When a person lives in an institution, for example, a nursing home or a hospital, even if they are a minor child, it's only their own income and resources can be counted for medical eligibility. And that's the same for SSI. So if somebody is in the hospital for, you know, six months or a year, they can qualify based on their own income and resources.

So as many of us know, historically it was pretty common for children with developmental disabilities to be institutionalized at birth or once their disability starts to manifest. and so the waiver program was designed to keep people with disabilities out of institutions by funding home and community based services, but by using institutional eligibility criteria, which means that if your child meets the admission criteria for one of these facilities, then Medicaid will treat them.

We'll look at their income based on assuming they were already in the institution. So they'll only look at the child's income and resources without regard to parental income. And I say income and resources. But the resource limits were phased out in California. but for SSI, the resources still matter. so there's a couple different waivers.

We're really going to talk about the regional center waiver. And the different waivers are based on what kind of facility? the child meets eligibility criteria for it. So most children with developmental disabilities, as defined by California law, are going to qualify for the home and community based services waiver for the developmental disabled, as expected. And that's available to consumers of the regional center.

Under the Lanterman Act, not all regional center clients are going to qualify for the waiver, but many will. You may also hear this waiver, referred to as the deeming waiver or the institutional deeming waiver, or just the waiver. in a regional center context, if they save the waiver, this is what they're talking about. So there are some people who have more medically complex conditions.

For example, they're on a ventilator, they have a g-tube or colostomy. Sometimes people will enroll on the Home Academy community based alternatives waiver, which requires that people meet the admission criteria for a nursing facility or subacute facility. in most cases with, with, with one exception of waiver personal care services. most of what children can get through Medi-Cal, they can get, regardless of which waiver they're on or if they're on income based, because a lot of the services are available through CTE, which is sort of the bundle of services that are available to children but not adults under Medi-Cal.

but there are a lot of children who have significant medical complexities, who don't qualify for the regional center because they have no particular eligible developmental delay or developmental condition. Their medical condition is solely physical. Those children can enroll on the HBCA waiver and have access to Medi-Cal based on that. So to be eligible for the HCBS waiver, you need to live, the child needs to be living at home with their family, not in an institution. They need to have a valid Social Security number. They need to not be eligible for Medicaid with no share of cost on any other financial basis. So you don't or they need to have a need for a service that's available through the waiver, but not through income based Medi-Cal.

But generally speaking, the issue is going to be household income. so you need to otherwise qualify for Medicaid, except that the family income is too high. and then you need to have a diagnosis and you need to have two or more qualifying conditions. In the area of self-help, mode of functioning, social emotional functioning, special health care conditions or expensive medical needs and receive at least one funded waiver service.

Now, where we run into trouble sometimes is that a lot of service coordinators believe that the waiver is only for children over age three, and that is not true. However, the child still has to be eligible for Lanterman Act and not just early start, because most children who are eligible for Early Start will eventually listen to the school district and will not continue on with the regional center after each three.

So in order to be eligible for the waiver under three, the child needs to be reclassified as status to, which means an eligible. So the child needs to meet the criteria on the previous slide. They have to have a diagnosis that will continue to qualify them for regional center after age three, and then they have to have at least two qualifying medical care needs or health conditions.

And the way I usually conceptualize that is because, you know, children under three don't usually have a lot of self care, responsibilities. And so it's really focused on those, those medical care needs or health conditions. but in those cases those children should be able to be enrolled on the waiver ahead of time before they turn three.

So how does Medi-Cal work? Medi-Cal provides health coverage for children and adults in California throughout the state, which I was talking about is early and periodic screening, diagnostic and treatment benefit. There's an additional set of services that are available to children under 21. Medi-Cal will pay for most medically necessary health care, but the definition of medical necessity for children is a lot more expansive.

So as with the regional center, Medi-Cal is the pair of last resort for health care. So if you have private insurance, Medi-Cal is always going to pay. Second, you still need to go to a provider who accepts your private insurance and your medical. But Medi-Cal is not going to step in until your private insurance has paid its share.

So I'll talk a little bit about the medical necessity standard, because it's more expensive for children, and that can help you establish the need for services. So for adults it's medically necessary if it's reasonable and necessary to protect life, to prevent significant illness or significant disability, or to alleviate severe pain for children. The service is medically necessary if it is necessary to correct or ameliorate, ameliorate defects and physical and mental illnesses and conditions.

So it's a little bit less extreme. It doesn't have to be protecting life or preventing significant illness. And if it's if it's correcting or ameliorated, making it better ameliorate, if it's making it a making it somewhat better. then it's so medically necessary. Almost all Medi-Cal enrollees are required to choose a managed care plan. There's still fee-for-service, but there's only on a very limited basis.

There's only certain people who will remain on fee for service for the vast majority of children who are enrolled on the waiver or through modified adjusted gross income. you will be expected to choose a managed care plan. So using Medi-Cal as a secondary insurance, if your provider accepts both your private insurance and the Medi-Cal plan, you should have no out-of-pocket expenses for Medi-Cal covered services.

But again, you need to make sure that you choose providers who accept both plans because Medi-Cal is not going to cover your out of pocket expenses for a provider that does not contract with Medi-Cal. but what if you need to purchase supplies or equipment, for example, incontinence supplies? So private insurance companies vary on whether or not they'll cover some things like incontinence supplies.

So Medi-Cal provides incontinence supplies for children aged three and older when it's medically necessary, but they will only pay after you've been denied by the private primary and primary insurance. So you start with the private insurance. You either get a denial or you get what portion they'll pay. And then you take the rest Medi-Cal, and you can minimize that out of pocket expenses for those types of services.

So what if I disagree with Medi-Cal. So we will talk about the IHS US appeal process, which is very similar because HHS is a medical service. But the main thing to take home when you're dealing specifically with Medi-Cal appeals as opposed to just age says, is that if your dispute is about eligibility for coverage, like whether or not you can get Medi-Cal, you file a hearing request.

If your dispute is with your managed care plan over a specific service or or a particular thing that you need to get covered that they don't want to cover or they want to terminate, then you file a grievance with the managed care plan first, and then depending on the outcome of that, then you can appeal to the state hearings division.

So let's jump into IHSS. What is the in-home supportive in-home supportive services program? So IHSS is a medical program that provides home based communion for home based personal care and related services, so that people with disabilities can remain safely at home in their communities for children. Ours are only awarded for the specific services eligible services that exceed what a parent would usually be expected to provide to a typically developing child of the same age.

Remember that phrase because it will come up over and over again compared to a typically developing child of the same age. So these hours are awarded based on need, not diagnosis. So when you apply it's not going to be based on my child has X diagnosis. Therefore they get Y hours. It's based on your particular child's needs in each of the different areas that they assess.

So when you do that appointment, you need to be willing to talk about your child's needs and limitations. It can be really tempting to kind of want to share our kids strengths and express pride at how far they've come, but they will take your words at face value. And my example is always my example is always like if you if you say, oh, I'm so excited that you know, my nine year old finally learned how to spell their name.

It took them years to do it, but they're finally able to recognize and spell their name. They might write down on the form. Child can read. So it just it's it's easy for the child's abilities to get overstated on those assessment forms, especially because they don't spend a whole lot of time with the child themselves. So they're looking to what you have to say. in terms of assessing the child's needs, don't overstate, but don't understate, you know, one parent's advice that we got as feedback was when discussing your child's limitations, think about what they can and can't do on their most challenging days. So what services will IHSS provide and which which services will they provide to children? So overall, these are the services that IHSS can fund for applicants.

However for children they're not going you're generally not going to get domestic services or yard hazard abatement. abatement. non-medical personal care and related services are going to be based on age. Accompaniment to medical appointments is going to happen sometimes. And then the big ones are protective supervision and paramedical services. And the older your child gets, the more the personal care and related services will come in.

But at the outset, protective supervision of paramedical services for younger kids are usually where the kids get ours. Because parents are generally expected to do a lot for their typically developing younger children. So I'm not going to go through the whole list, but you can see that these are some of the personal care services. There's ambulation, there's dressing, there's hygiene, feeding, repositioning, transfer and then related services.

You generally have to document extraordinary need. So like laundry meal prep, any of those things if you have to do way more of it because of your child's needs, then you may want to document it and they may put it into another category. These hours are all ranked, but you're not going to be asked to rank your child's skills for a certain number of orders, but I still think that it's helpful to go over what those ranking, what the ranking looks like so that you understand how they're conceptualizing the needs.

So I'm going to show you this. We're going to put this link in the chat. Don't be alarmed. It's a lot of numbers. But I'm going to explain exactly what it means. So take a look at this for a second and then let's talk about this. So anywhere that you see a one rank one ordinarily means that a person can do it independently for a minor many tasks. Like I said, the parent is expected to do it anyway for a child. And so they're going to rank it as a one either if the child can do it independently, or if the parent is expected to do that task for a typically developing child. So in that chart, if it's only a one, that means parents are supposed to do it at that age, rank one.

If it says rank 1 to 5, that means that they're going to base it on your child's individual needs. and that breaks down further, which is, you know, rank one, meaning they can do it totally independently and rank five as they need someone else to do it completely. But there's, you know, there's levels of how much assistance they need.

And that ranks two for rank six means that it's a paramedical service. So we're going to go back to that chart in a minute. But like for meal preparation you're not going to get meal preparation for for a 5 or 6 year old just for their meal. But if you have to puree it, if you have to, to cut it into tiny pieces and then supervise it, because they're choking risk, then that becomes more of a paramedical service because the doctor needs to teach you how to do that.

So let's go back and look at this so you can see they don't have very high expectations for children with housework. but don't tell your children that, you know. but, like, for example, let's go over to bowel and bladder care. So until the child turns for bowel and bladder care is a one or a six.

So one is going to be while most toddlers are not quite potty trained. Six is going to be your child needs to be catheterised. Your child has an ostomy. something that's paramedical that you need to be taught in order to handle your, your, your child's toileting needs. so you can get bowel and bladder care for an infant, but it's going to be if it's medically based and not they're not just in diapers.

Then when they turn four, it changes to 1 through six. So that's when they start giving hours based on the child's specific needs for dressing. You see, it's one until they turn five and then they start assessing for bathing and oral hygiene. It goes up to eight. For ambulation it's five. And you can take a look at this.

This can be a really helpful tool for kind of deciding when you want to apply. based on what your child's needs are. So let's talk about paramedical services. I talked a little bit about what that means. Paramedical services are services that are ordered and directed by the child's physician or other licensed medical provider. I am not going to read these all off, but these are some examples.

It's basically anything where it's not just a generic thing that you would do for any person. It's the doctor has taught you how to do the specific thing for your specific child. And that can include, for example, monitoring on an as needed basis or titrating medications based on symptoms. Because it's not just it's not just, oh, take this three times a day with meals.

It's, you know, take it based on the output of these monitoring tasks and you may need to like adjust medication levels. And that's a paramedical service as well. Anything that requires judgment or training, that is instilled in you by the medical provider. so this is a medical, paramedical service form. I think we'll pop it into the chat.

We have a longer presentation on this that you can take a look at. But the biggest takeaway for me on this is this is a very small form. If you have a child who's medically complex, you can also work with your doctor to create a spreadsheet, and attach it and have them sign each page, make sure that the doctor writes down the frequency, and the duration.

So they need to make sure it says how many times per day, how long it should take, how long each task should last. and also how long the order is for, whether it's indefinite or whether it's like, this is for the next two years. all of that should be indicated on the paramedical services form.

Protective supervision. This is the big one that we get a lot of questions about. Effective 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. Their actions must be non self directing, and the risk of harm to self or others must be due to their severe cognitive impairment.

So what is non self-direction? So in other clinical setting self-direction can mean a lot of different things. IHS US has a very specific session definition of self of self-direction and you want to make sure that you hold them to that. the non non self-direction for IHS as productive supervision is an inability due to a mental impairment or mental illness for individuals to assess danger and the risk of harm, and therefore the individual would most likely be able, would most likely engage in potentially dangerous activities that cause self-harm.

It does not mean they know their name, or they know to ask mama if they want snacks like some. Some caseworkers might say, oh, that's self directing behavior. that is not what it means in the IHS context. It means the ability to assess for the risk of danger or harm before acting. What is not protective supervision? you cannot get it to monitor for spontaneous medical emergencies like seizures, or a heart of or cardiac episodes.

However, if your child, you may be able to get paramedical services for intermittent monitoring. If your child needs more modern monitoring because they can't communicate their symptoms. and you may be able to get protective supervision if your child has life sustaining medical devices that they can disrupt because they don't understand what they're for. They have a g-tube and they're constantly playing on it, and they don't understand that if they pull it, it will come out.

And if the stoma closes, they might need another surgery. If they have to take in their pull of pulling it out. Things like that. It's a medical emergency, but the medical emergency is caused by the child's lack of understanding of what's going on. And so that is grounds for protective supervision. You cannot get protective supervision for intentional self-injurious or aggressive behavior.

And so this is that means deliberate self-harm or deliberate violence. And this is an area where, where it's easy to get hung up because, again, aggression in other clinical contexts may just mean the child is lashing out and hitting. But for IHSS, it's intentional. And so if your child is having a meltdown and they're sort of flailing without regard to what they might hit, you have to ask yourself, is this aggressive behavior or is this behavior because they don't understand what's happening?

If they're aggressive, you know, it's just use language that matches what is actually happening in this situation. and just be careful not to use language that has a specific meaning for us that doesn't actually fit what's happening in your circumstance. also, damage to property as opposed to damage to a people as opposed to physical injury or harm.

But then there's the question of, well, does damage to property create the risk of harm? Like if the child is throwing glasses and dropping glasses because they like the the sound of it? There's a risk for harm there. All right. The protective supervision form. I think we'll pop that in the chat as well. Doctors will need to check the boxes for memory, orientation and judgment.

They should put in some examples. If they get confused about how to do that for a young child, just have them think about what kinds of things are typically developing. A child of that age would be expected to be aware of. And for a very young child, it may be as simple as, you know, the young child who only touches the hot stove once because they learn their lesson, and they don't touch it again because they remember that it's hot and it will burn and is.

Does your kid learn that same lesson? That may be under memory. you know, do children do just that when the doctor is nervous about filling this out? Just make sure that they understand that they're not comparing the child to an adult. They're comparing the child to typically developing children of the same age. So we often say to create a behavior log to track, you know, all the different times that you have to intervene to stop your child from accidentally hurting themselves.

Sometimes you don't have time to do a whole behavior log. and so sometimes you might just want to make a list of every specific incident that you can think of, that happened everything, everything that you've had, where you've had to intervene. things that can happen any time of day. You basically want to show that whatever is happening is not happening only at predictable times.

If it is great, that's great because then you know exactly when you need to provide extra supervision. but for a lot of our kids, we have no way of knowing, like what's going to happen in the next half an hour, regardless of what the circumstances are. So, make sure that that's clear. If that's the case for you in the paperwork.

Can you be your child's IHSS provider? So until February of this year, a parent could only be paid as the provider under limited circumstances, relating to who in the house was working and available to provide care. all those rules have changed, but some caseworkers are still asking for parents work schedules or for proof that they're prevented from working full time.

So I want to make sure that we pop in the chat. all county letter number 20 3-106. If your caseworker seems confused about the parent provider rules, or is telling you that you can't be the provider because you work full time, or that you can't be the provider because you and your spouse both only work part time?

Make sure that they have a copy of this all county letter. because I don't know how widely this has been disseminated. and we're still hearing that some, some people, some people are being questioned about this. So keep just keep this in your back pocket. So parent providers still have to be eligible to work in the United States.

And they will still have to do background checks and fingerprinting. And there's a live scan fee. And you have to do an orientation session. But that's it. That's the the requirements are now the same as they are for adults. However, if you do work full time or you're not eligible to work as a provider due to your visa status or conviction history, you do have other options because if you do work full time, you can be the provider while you're home.

But obviously you can't be the provider while you're working. So you can hire somebody else to do some or all of your child's hours. And you can also do some of them. So, for example, if you're not eligible to work for IHS, you need somebody else to be the provider. if you work or stand ten school full time, you can't fill hours during the time that you are at school or working.

So you'll need to have somebody else fill the hours if IHSS tasks are required during that time. You can be the provider when you are available. and as with parent providers, third party providers need to be eligible to work and have the same employment requirements. If you need help finding a provider, you can call your county's public authority.

And they can, they usually have a registry of people who are ready and available to work. So what happens if IHS tries to reduce or terminate hours? So if you are already receiving IHS US and you receive a notice of action, terminating or reducing hours, you should file an appeal in writing within ten days of receiving that notice and request aid.

Paid pending appeal allows you to continue getting your current level of benefit while you're in the appeal process. there's multiple ways of submitting a hearing you can submit online. You can do it by phone. You can mail it. You can fax it. just remember that if there is always the potential, if you appeal, that they may increase or decrease in hours.

So sometimes if you're denied a new appeal, or if you get a certain number of hours, but you felt you should have gotten protective supervision or something like that. Sometimes after you appeal, the county will come back and offer you a reassessment in exchange for a conditional withdrawal. so if that happens, just make sure that anything that you sign, is clear that that the if you disagree with the reassessment that the appeal will pick up where it left off with the same original date of application, your original date.

Don't have them say, well, if you disagree, then the retro will only go back three months. Make sure anything that's in writing that you sign, is clear that your retro benefits go back to the day you were originally applied. Even though you're doing the conditional withdrawal. If you agree to that conditional withdrawal, read it over very carefully.

You might want to have an advocate or attorney read it just to make sure that your original date is protected. So if you disagree with the reassessment, you know, if you disagree sometimes, and this is even if you were initially denied, sometimes the caseworkers will try to just convince you to just, you know, they're not going to qualify now.

Just drop it. Apply again in a couple of years. If you do that, that stops that starts the clock over on your retroactive benefits. So if you believe that your child qualifies, you don't want to start over from scratch because that will eliminate your retroactive benefits. If you get to the end and they say, you know, they really don't qualify for it for now and you've exhausted all your appeals.

Then, you know, apply when they're a little bit older. But, don't assume that just because it's denied the first time around, or sometimes even when you call and you say, I'd like to apply for righteousness for my, you know, six year old, that's oh, we don't do that. Come back when they're ten. Don't set just the responses.

Thank you. Thank you. That's something I'd like to apply anyway. Thank you. because if they tell you oh come back when they're ten you haven't even applied. You don't leave. There's nothing to appeal. Right. So again, if you disagree with the reassessment on a conditional withdrawal, you have the right to reinstate the appeal and request your fair hearing in front of a judge if you need help with a fair hearing.

And this is true of IHSS, Medi-Cal, Regional Center. You can always hire an attorney or advocate to help you prepare for and present at the hearing. a professional IHS advocacy or advocate or attorney usually takes a percentage of the retro benefit. but they have a lot of practical experience in responding to the county's specific objections.

You can also contact Disability Rights California. Office of Clients Rights Advocacy, Disability Rights Legal Center and Public Counsel. There's a lot of nonprofit, disability rights agencies. Some of them have income based requirements. Some of them don't. If your child is a regional center client, you may want to start there because every regional center houses an office for clients rights advocacy.

And they may be able to assist you with at least preparing for or the appeal. The most common misstatement that we hear from workers is IHSS doesn't accept clients your age. We don't give hours for that because it's your responsibility as parent. All children your child's age require supervision. and in individual cases, that might be true, but they can't do it based just on the age of your child.

So, I'll County letter 98, 87, and I think we can pop that into the chat. has a more thorough discussion, but the bottom line is you can't deny protective supervision based solely on age. You have to assess based on the child's specific needs. and what kind of supervision they require. Relative to a typically developing child.

So social security benefits. So there's two main types of social security benefits that apply to our kids. One is title two, which is tied to retirement and disability benefits. we're not going to talk too much about this today, but we will touch on it a little bit. Title 16 is SSI. SSI is need based whereas SD and retirement are based on work history. and SSI, social security benefits are linked to Medicare. SSI is linked to Medi-Cal. So benefits that are linked to work history that most, most often come up for our kids. When a parent in the household is receiving Social Security, retirement or disability benefits, because any time a parent is receiving benefits from the spouse and any minor children in the household will receive a dependent benefit.

But if your child has a disability, that will be expected to continue into adulthood. That child can continue receiving the dependent benefit after they turn 18, as long as they are either as long as they're still disabled, as long as they're unmarried or married to somebody else who's receiving those benefits. And the disability begins for each 22 and the child is a dependent at the time that the parent became, that started getting their benefits because it's called disabled adult child benefits will continue to receive their benefits for life as long as they remain, you know, they meet, continue to meet the criteria. and under that classification, the sense that they have to be unable to earn a substantial income. And that's the same income criteria that they use for status for Social Security disability insurance, which is whether or not they're able to perform substantial gainful activity, which is based on a certain dollar amount per month.

So in 2024 SGA, it's 1550 a month for 29 to 2590, because people who are blind have additional work expenses. so after 24 months on benefits, so once they turn 18, they can get benefits. Once they've been on it for two months. So for 24 months they can be eligible for Medi-Cal, both for sorry for Medicare.

So you may have a child who's an adult disabled child who has both Medicare and medical. and that benefit will increase the survivor benefit when the parent passes away. So let's talk about SSI. ssi is administered by the Social Security Administration, but it's a separate benefit that is linked to disability and financial need.

It is not linked to work history. So for children, it's a medically determinable physical or mental impairment or combination that causes market and severe functional limitations. And that can be expected either to be terminal or lost at least 12 months. For adults, it's completely tied to whether or not they can earn a certain amount of money.

So the pediatric definition is more expensive. As with Medi-Cal, if the child is basing is receiving SSI on the child criteria, they'll usually be reevaluated at 18 under adult criteria. But if they are still in special ed on an IEP still in high school, provide the IEP to SSI to SSI, and they should continue to apply the pediatric criteria until the child graduates or exits the school system.

We can toss this link into the chat as well. And you can and you can look at the different thresholds. It's diagnosis based. But within each diagnosis there are specific levels of, you know, there's specific thresholds and criteria, within each diagnosis. And that will change also based on adult or pediatric.

So again SSI is need based not linked to work history. Once a child turns 18, only their own income and resources count. These are generally tied to the federal poverty level, with resources capped at 2000 or 3000 if it's a married couple. There's an eligibility calculator here, which we can also put in the chat. You can take a look at this.

This changes every year depending on cost of living updates. But you can see that the amounts change depending on a person's living situation. So for a minor child with this disability, there's a level. If you're an adult living in somebody else's household, there's a different level. So you can take a look at that, and see kind of where your child falls, especially if they're all over 18.

So again, once they turn 18, only their own income and resources are counted, even if they are still in school. if they earn money, then their benefit will be reduced by $0.50 for every dollar they earn. and if their savings balance goes over 2000, the benefits will be suspended. But you can save up to $100,000 in an able account without it being counted against the resource limit.

That an able account can have more money in it. But if you're on SSI, the threshold for the cap is at 200,000. So California Children's Services, is a state program that provides funds and, that funds diagnostic and treatment services to children under age 21 with six eligible medical conditions. Eligibility is based on medical diagnosis and financial need for the most part. So CCS can be an avenue of assistance for kids who have significant medical needs. but don't qualify for regional center because they don't have developmental needs. The services funded include diagnostic services, hospital and surgical treatment, medical case management, labs, imaging, medical equipment, here's a full link which we'll put in the chat of six eligible conditions.

And each one of these will have specific criteria, as to like the thresholds that make child eligible, for financial eligibility. The child has to be under 21 adjusted household income, less than $40,000 or out of pocket medical expenses over 20% of household income. However, this is sort of the take home point if you're applying for CCS.

Income is not considered when you need diagnostic services to confirm whether there is a CCS eligible medical condition. if they were adopted with a known CCS eligible medical condition, or if they have full scope Medi-Cal with no share of costs. So if your child is on the waiver and they need a CCS service, if your child already has Medi-Cal, then they will not count household income, but they will still look at private insurance first.

Oh, and also if you're applying for services to the medical therapy program. and that's kind of that's those are services that happen in conjunction with the local education agencies. so those, those services, there's no charge and there's no financial consideration unless you need equipment. And then they go back and look at that financial eligibility. but yeah, if your child already has Medi-Cal, then there should be no share.

They shouldn't look at financial, but they will look at your insurance and say, you know, as with Medi-Cal and as with the regional snacks, it's not going to pay until your private insurance pays. So a little bit about undivided. And then we'll get to some questions and answers. Undivided brings expertise technology you need together to support parents of kids with disabilities by using Undivided digital platform with step by step guides, one on one parent coaching, expert backed articles and organizational tools, parents can get more resources for their children and answer the questions of what should I do? How do I do it? And who can help me?

And let's get to some questions and answers.

Lindsay

Awesome. Thank you Lisa. Now you can, like, take a breath. Like have a drink. Right? You know, that was very concise and thorough. You covered a lot of the questions that we received during the presentation, but we'll have time to address a few more now.

I would love if you could give us one important tip to take away about each program that we've discussed today.

Lisa

Yeah. so Regional Center is going to be the payor of last resort. Medi-Cal is always going to be secondary to your private insurance. And if you have two, private insurance is going to be third. IHS, remember that the hours are always going to be based on your child's care needs relative to a typically developing child of the same age.

A take home point is that SSI will apply the pediatric definition of disability. As long as your child is still in school with an active IEP, most services on a financial basis, unless the child has Medicaid. So if your child is already on medical, then financial, household finances should not, the account should not be considered.

Lindsay

Okay. And what is one big picture message that you want parents to remember?

Lisa

Don't take the first no as your final answer. Sometimes the answer is going to be no. Sometimes you're going to exhaust all of your resources and not just exhaust all of your options for appealing. And the answer's still going to be no.

But that first one. Don't don't take that first one as your no. If you really believe that your child qualifies for the service and needs the service. the note, the first no is the first step. Sometimes, which is probably a great piece of advice for, you know, no matter what program we're dealing with. And I'm sure everybody listening to this call probably lives that advice and needs it every day.

Lindsay

So thank you, Lisa, again, you covered so much ground. But it is important to have an overview of some of the major programs that can support our families all in one sitting. And Lisa and I know Lisa, and I know that this barely scratches the surface, but we're hoping it can give you an idea of what is available and which programs you might want to investigate further.

And as with all of the training series that we're doing this summer, we encourage you to use this recording as a starting point to take it one step at a time. Donna shared a lot of article links today in the chat, and those are a great way to start familiarizing yourself with these programs. But if you want or need more than articles, remember our undivided navigators are ready to create a road map for you.

So if you don't know where to start or where to look next, we've got you covered. So Donna is going to share the kickstart link again. Our kickstarts are free with no obligation to continue. Then you can work with a navigator and understand more about how the undivided platform can support you exactly where you are.

So until then, please stay connected with us. Join our parents only Facebook group and follow us on Instagram, Twitter, YouTube and LinkedIn. Thanks again to Lisa and to all of you. Our mission is to support you so your children can thrive and we want you to thrive too. We'll see you soon.

Contents


Overview

Full event transcript

Join the Undivided Community to get more resources like this in your inbox

Tags:

Promise Image
Each piece of content has been rigorously researched, edited, and vetted to bring you the latest and most up-to-date information. Learn more about our content and research process here.
A Navigator is your Partner at each turn
Every Undivided Navigator has years of experience supporting families raising kids with disabilities or parenting their own. Partner with an Undivided Navigator for a free Kickstart to learn first hand what support feels like!
tick-icon
Expert-driven content, guidance, and solutions.
tick-icon
Member events and office hours with real answers, plus access to our private parents' group.
tick-icon
Priority to begin a free Kickstart of the Undivided Support System with a dedicated Navigator.
“It’s so helpful to have one place that you can go to get many answers.”–Leeza Woodbury, with Navigator Kelly since 2020
*Currently offering Navigator Kickstarts to residents of California