Common Questions about IHSS Protective Supervision, Answered by Undivided’s Public Benefits Specialist

Q: When should I submit SOC 821 (the doctor form)?

A: When the IHSS caseworker comes over for the home visit, you can ask for form SOC 821 and let them know that you'll be submitting it. If you already have it completed, you can hand it to the caseworker right there at the home visit. Make sure that you keep a copy for yourself. You’ll also need to fill out SOC 825 to submit with it. (A behavior log is not required; the behavior log is for you to help your doctor, and you can attach it to your application if you want. Make sure that the log states that this is a non-exhaustive list.)

Make sure to submit your form within a few days of the home visit; don't wait two or three weeks before submitting it. Otherwise, before you've even had time to submit it, they might issue a denial. If that happens, file an appeal.

Q: Does the doctor who fills out form SOC 821 have to be a pediatrician?

A: It should be a doctor. It should not be a behaviorist or therapist; you can submit additional documentation from your behaviorist or BCBA, but the person who fills out form SOC 821 should be a doctor who is treating your child and knows your child the best because the form is going to ask for specific examples. There's an area for notes under each category of memory, orientation, and judgment, so it needs to be filled out by a doctor who can write notes with their knowledge of the child.

If you have other providers or other caregivers, like a respite provider or behaviorist who wants to write a letter to speak to some of the behaviors that you're describing, submit that too. Any supplemental letters from psychologists or behaviorists, you can put that on a regular piece of paper and indicate the child's name and case number. There's not a specific form for supplementary notes.

Q: What is the timeframe for IHSS to respond after I give them the forms?

A: Usually, you’ll get the Notice of Action within a few weeks of the home visit. Sometimes, you'll get a Notice of Action and there won't be anything about protective supervision, and they'll say that another Notice of Action will be coming with protective supervision. Give them maybe another week, and then appeal if there's no answer about the protective supervision. Sometimes it does happen that they give you the first Notice of Action and then there's another one addressing protective supervision, but don't wait much longer than a week because you want to make sure that you have time to appeal.

Q: If I already have protective supervision, how often do I have to resubmit or apply again?

A: You will have an annual visit every year, but it will vary how often IHSS requires you to resubmit your application for protective supervision. There is an option on the form for the doctor to check “permanent” or “temporary,” but if they check permanent, that does not mean that you're never going to have to fill out that form again. It might mean that you have to fill it out less often based on your child's age and how things are progressing. They're going to tell you when you have the annual home visit if they want you to have form SOC 821 filled out again.

You might have to resubmit more often when a child is younger, but as they get older, it might be every other year or every third year; it's going to vary. It may also vary depending on your child's specific diagnosis.

Q: Would my child qualify for protective supervision if they…

• …self-harm?

  • Intentional self-harm does not qualify for protective supervision, but how do you define intentional self-harm? For example, if a child is hitting themselves for sensory input, are they intending to hit themselves? Maybe. But do they understand that they could hurt themselves that way, and their goal is to hurt themselves? There are plenty of things that children do on purpose, like climb furniture or try to get a toy that's out of reach, but if they didn't understand that they could be hurt that way, then that's not intentional self-harm.

• …elope or run into the street without looking?

  • Are they at an age where a child would be expected to know to look both ways before crossing the street? If the child should know at that age that they need to look both ways before they cross the street, but they just run into the street because they're not able to understand that this could be dangerous, then that is an example of a cognitive deficit causing the potential for harm.

• …are unaware of the danger of touching hot surfaces?

  • A lot of kids have behaviors where they could potentially be injured. The question for protective supervision is: does the child require 24/7 supervision because of their impairments? If the main issue is they touch a hot stove, then IHSS will likely say that's a predictable time because it's when you're in the kitchen cooking. IHSS will likely say that they just need extra supervision while you're cooking, and that's not the same as 24/7 supervision.

• …have an eating disorder or feeding issue like ARFID?

  • IHSS might potentially view an eating disorder as intentional self-harm, so you would want to have extensive documentation about their inability to assess the risk of harm to themselves from the behavior. There are a variety of different eating situations that do require constant supervision, but you have to sort out which ones are a product of intentional self-harm and which ones are a product of not understanding the potential risk. That's where IHSS is going to draw the line: Is that self-directing behavior? It’s a difficult question. There's also the 24/7 component; if the issue is making sure that the child eats enough at meal times, how does that impact 24/7 supervision? You really want to talk to your child’s doctor about whether this specific condition fits into the parameters of what protective supervision is.

• …have multiple disabilities, including vision or hearing loss?

  • You should certainly bring that up at the home visit and talk about that in your documentation. One common example for IHSS for elderly adults is when a person has Alzheimer's or some other cognitive impairment where they don't understand that they're a fall risk and they can't be climbing stairs or getting out of bed, but they have forgotten because they don't understand that they're a physical fall risk. That is a situation where they need supervision. The same may be true of a child who has a visual or hearing impairment and has a cognitive impairment that makes them not understand the risks involved.

• …have seizures or epilepsy?

  • Protective supervision explicitly excludes monitoring for medical emergencies such as seizures. If the only reason that the child needs supervision is because they might have a seizure, then IHSS is not going to award protective supervision. However, you may have an argument if the child has very frequent and unpredictable seizures, and in the period after the seizure, they're likely to engage in potentially dangerous activities because of impaired memory, judgment, or orientation in that period. But as far as just watching for seizures, you cannot include that in protective supervision. You could, however, apply for paramedical service hours if the child requires specific medication or intervention for the seizures.

• …get up in the middle of the night and don’t sleep without a parent present?

  • This may come up in your discussion of protective supervision to the extent that you're showing that the child needs 24/7 supervision. If the child is not able to evaluate the risk of harm and is likely to do something that's potentially going to injure themselves during that time because of their impaired judgment, orientation, and memory, then you could include that behavior in your list and let IHSS know that it's not just during the day; it's at night too. However, IHSS is generally not going to give hours for the fact that they won’t sleep without you. If the child is fine during the day and it's just at night that they wander around, for example, they will likely say that’s not a 24/7 need.

The bottom line: There's not one specific behavior where if your child does it, they qualify for protective supervision. It's a consideration of all the different things that they do throughout the day and night that equal that need for 24/7 supervision. We recommend using our step-by-step guide to applying for protective supervision, which goes over how to log your child’s potentially dangerous behavior and get your child’s needs documented.

Q: Can my child qualify for protective supervision if they are non-ambulatory?

A: Anticipating an external emergency or a medical emergency is not grounds for protective supervision. For example, if a child couldn't escape in a fire, IHSS would not give protective supervision for that. However, in some cases, a child who can’t walk may still be able to hurt themselves accidentally due to their impaired cognition. If you apply for protective supervision, IHSS will likely ask how your non-ambulatory child could hurt themselves, so be prepared to answer.

Here are some situations where a non-ambulatory child may be at risk of hurting themselves:

• If you have a child who is non-ambulatory but is able to shuffle around or roll over, and could potentially get themselves wedged somewhere but couldn't get themselves out. For example, a child with spasticity or low muscle tone might be able to move around, but they might not have the coordination or strength to maneuver themselves out of a dangerous position or situation.

• If you have a child with a trach or ostomy or g-tube, and they're messing with it constantly and pulling or disconnecting equipment and don’t understand why that’s dangerous

• If you have a child who is likely to fall from wherever they are and doesn't have protective reflexes

Q: If my child qualifies for protective supervision, what are the maximum hours that can be awarded?

The maximum monthly hours for IHSS are 283 for people in the “severely impaired” category who require at least 20 hours a week of personal care and paramedical services. If you have more than 20 hours a week of care, protective supervision just bumps you up to the max of 283; it doesn't put you over. If you see somebody who only has 10 hours a week of protected supervision, it's because they have so many other services that there's not enough room for the total amount they need.

If your child has fewer than 20 hours a week of other IHSS services, then protective supervision is all or nothing. Whatever monthly hours your child is awarded, IHSS will add 195 protective supervision hours on top of that. They're not covering 24/7 care; it's a block of 195 hours toward that 24/7 care. (Note that some streams of IHSS funding may cap hours for non-severely impaired recipients at 195 total.)

Q: Will my child get more protective supervision hours as they get older?

There is no age requirement for protective supervision. Very often, it's a lot harder to get protective supervision before age three. It's possible, but it's a lot harder because children who are under age three need a lot of supervision already. The hurdle that you have to get over is demonstrating that your two-year-old needs supervision 24/7 AND needs supervision at a greater level than a typically developing two-year-old. You can see how that might be a much higher threshold than saying your 10-year-old needs more supervision than typically developing 10-year-olds. It is possible, but it is more difficult. Once protective supervision is awarded, the hours don’t change based on age, except to the extent that other authorized hours may impact the total number of supervision hours reflected on the Notice of Action.

Q: For parents who are divorced and their child receives IHSS, how are hours assigned to both parents? Can both parents claim live-in provider status?

A: It's going to depend on how you work out the custody agreement. There are situations where the child lives 50/50 with each parent, and each parent is a live-in provider for their hours. But there are also situations where the parents have 50/50 custody, but maybe one parent works and the other parent continues to provide IHSS during the time that they're with the other parent. So in that case, that parent would still continue to be the provider, or the distribution of hours may be different based on how the family chooses to arrange things.

This is something that's going to come down to your specific family and how you choose to divvy up the hours, and how you choose how you divvy up the time, and who's providing those services on a daily basis. If the child lives with each parent 50% of the time, and each parent is claiming 50% of the hours, then, yes, they should both be able to do the live-in provider certification.

Q: How will potential federal Medicaid cuts affect IHSS hours, and how much could be cut?

A: That is a great question to which there is no good answer. The main issue is that home and community-based services like IHSS are an optional service under Medicaid. The statutes that establish Medicaid list out certain things that they're required to provide, and then there are certain services that states can choose to include in their Medicaid package. IHSS is one of those optional services, which is why there are so few states that have it.

The problem is that optional programs might be the first ones that states are looking to cut in order to make up for budget shortfalls elsewhere, regardless of whether they’re designed to target people with disabilities. Because California opted to do the Medicaid expansion and to make Medi-Cal available to more people, they may choose to maintain that expansion at a cost to other programs.

Right now, the best thing that you can be doing is reaching out to your house representatives and your senators and make sure that they understand how important these programs are to our families. Make sure that they understand that cuts to Medicaid are going to impact these programs. Share your story. Tell them about your child, especially if you live in a district where you're not sure how your representative might be voting on this. Call them. Put a face on it. They don't all understand, even though they're elected representatives, how important these services are to families of kids with disabilities, so make them see. Urge them not to support cuts to Medicaid. See our article Parent Advocacy for Disability Rights: What We Can Do Now to Protect Our Children’s Rights for specific ideas and steps you can take.

For more help with IHSS, be sure to use all of the member resources on the Undivided platform, including articles, videos, templates, and step-by-step guides to applying for IHSS and protective supervision services. You can also join our biweekly office hours, where Lisa Concoff Kronbeck is a frequent contributor, to ask your questions and get answers with 1:1 guidance.