Ten Secrets for People with Live-In Caregivers

Posted on by sleepygirl
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Art: Robin Mead

If you are disabled and live with a caregiver or home aide, here are a few services and benefits you may find helpful.

What is a Live-In Aide? Does My Caregiver Count?

Every program has different rules. Please check the policies for the program you are applying for. For some programs, the person helping you will only be considered a home aide if she is officially hired and paid.

In other programs, any person who is caring for you may be eligible to be considered a home aide. In some circumstances, family members can be an aide. In most cases, you will need a form from your doctor stating you are disabled and need an aide. You do not need to be approved for Social Security to be considered disabled.

Five Secrets for Everyone

Salary – If someone is assisting you with personal care and this is helping you stay out of a nursing home, the state may be able to pay this person a salary for the care they are giving you. The state would rather pay a small amount to your friend or family member who is caring for you, as opposed to a large amount for a nursing home. Learn more about Home Care Waiver Program

Time Off – If the person caring for you is unpaid and needs help, or need more time off, you may find it helpful to look into other programs that can provide an aide during the day to come get your caregiver a break. In some circumstances, there is no charge for this service. Caregiver & Home Aide Programs

Food – If your caregiver lives with you but purchases and prepares separate food, you are eligible for your own food stamps account. Food stamps will consider you and your aide to be two separate “food stamps households”, even though you live together. If your caregiver is low-income, she may also apply for her own food stamps account separately from you. Food Stamps Regulations

Phones – If you and your caregiver do not share bank accounts and finances, you would also be considered two separate “phone households” even if you live together. Free Phone Policies

Utility bills – Your aide’s income may not count for utility assistance, which may mean you can qualify for a utility assistance even if you were turned down in the past.  Check with your local energy assistance program. If the person processing your application does not know this policy, it may help to read the utility assistance program manual for your state, find the policy, and show them. In some states, this will only apply to a paid aide.

SSI – If you are on SSI, and you live with a caregiver, this will have no impact on your disability check, as long as your finances are separate and you pay your share of the rent and utilities. Maximum SSI is $750 in most states, and slightly higher in some states. “I Live With Other People. Does Their Money Affect My SSI?” and How Much Rent to Pay on SSI

Five Secrets for Affordable Housing

This is for anyone living in (or applying to) HUD housing, Housing Vouchers, Section 8, public housing or USDA rural rental assistance.

Housing – If you live in certain types of subsidized housing, in some situations, you can add your aide to your housing: How to Request a Live-In Aide

Bedrooms – If you live in certain kinds of affordable housing, when you are approved for a live-in aid, you can also get approved for an additional bedroom for your aide. Obviously, your building or complex will need to actually have larger apartments – they can’t magically materialize extra bedrooms out of thin air!  How Rent and Bedrooms Work if You Have a Live in Aide

Rent – Aides do not pay rent in HUD housing. There are two different ways that caregiver income might be excluded from rent calculations: How to Exclude Aide Income from HUD Housing

Housing vouchers – If you have a housing voucher, the voucher amount may increase to accommodate the extra bedroom for your aide. This is called the “payment standard.” Learn more about How to Apply For Section 8 Housing Vouchers

Housing for aide’s family members – According to a new HUD policy, a live in aide can now have a family member live with them as well. For example: If your aide has a child or a spouse: New Changes to Live-In Aide Policies for HUD Housing Vouchers

Plus: If you are applying for housing, also see: How to Apply for Housing if You Have a Caregiver

More Secrets for State Programs (Medicaid and Medi-cal)

If you are receiving a home aide through a program funded by your state, there are a bunch of other benefits that may help you. These programs may be called Medicaid Waivers, Medicaid Home and Community Based Care, IHSS, Long Term Care, or something different in your state. Depending on your state, extra benefits may include:

  • Free assistive technology (computer equipment, communication devices, etc)
  • Free home modifications (wheelchair ramps, walk in showers, grab bars, etc)
  • Funding for a variety of health-related purchases
  • No deeming / income does not impact SSI
  • No taxes on home aide salary

Learn more about: Ten Secrets for People in Medicaid and Medi-cal Home Care Programs

Carnation Gets Utility Assistance

“I was told I did not qualify for energy assistance. Then I found out about the live-in aide rules. I filled out the application and I did not write down any information on my aide’s income or assets.  Instead, I wrote: see attached. I attached a note saying: I have not included financial information for my live in aide because live-in aide income is excluded and I attached with a copy of the policy. A few weeks later, I received a utility assistance of $500! My only sadness is that I could have been getting this assistance years ago.”

Learn More

Meet Jane and Sally – Example of affordable rent and other live-in aide benefits

Thanks for Reading

🌷 This page is part of the free online guide: The Sleepy Girl Guide to State Home Aides

🌷 Art on this page by Robin Mead and Elizabeth D’Angelo.

🌷 Page Updated: 8/1/19

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38 thoughts on “Ten Secrets for People with Live-In Caregivers”

  1. Great information. I have a brother who is on disability and he has a problem with someone he hired to leave his premises. My brother chose not to have him as his ‘care giver’ anymore and is having trouble to have this person move out however , this person will not leave. This man is a threat to my brother and I am afraid of his life. My brother is not all there and they both had a horrible argument 2 months ago and my brother is in and out of court to have this peros on evicted. This person is not on my brothers lease. It’s only my brother in the lease. How can we have this person leave? Please help !

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  2. This is hands down one of the informative sites that I have come across. I wish I had found it three years ago when I first became disabled, fortunately I found most of it on my own. Thanks. Keep up the great tips.

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  3. I’m a family member living with a disabled parent in low-income housing, and I recently got approved by a state program to take care of the parent. Is there a way for me to transfer from being a “family member” to a “live in aide” so that my income isn’t subject to hefty rents?

    I want to reach out to the housing office but I fear it’ll just be like my experience at the Social Security office: not only do I not get help (because many times workers are vastly underinformed) but I’m scared I’ll trigger actions I don’t want, specifically them saying I can’t be a live in aide as a previous family member and them asking about my income to increase our rents.

    So far, a lot of research has shown me exactly what this blog says: I must prove these 3 points to be considered a live in aide
    1. live in aide is essential to the care of elderly/disabled person
    2. not obligated for the support of the persons
    3. would not live in the unit except to provide the necessary supportive services

    (1) I can easily prove with medical documents. (2) I can easily prove since anyone can be the aide. (3) I feel like I could prove too — I was going to move out anyways because if I were to find a different job, the income is so high that rents will be ridiculously high and not worth it. Is there some kind of way to get myself labeled as a live in aide?

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    1. I have seen this happen when an adult child moves out, then later needs to move back in to be a caregiver. I haven’t seen anyone try to switch while remaining in residence.

      My general sense is that housing authority will deny the request… but it doesn’t hurt to try to keep appealing and trying to prove your request. It might be a bit of a fight. If you decide to try it, please report back. 😊 Places to reach out for legal help: https://howtogeton.wordpress.com/get-help-or-file-complaints-for-hud-housing-problems-disability/

      I think you are on the right track with number one and number two. Number three is tricky. May help if you can show them written proof of a firm job offer you are turning down and/or proof you have somewhere else to live.

      Also: If it’s a seniors-only building there are special rules for adult children being aides.

      I don’t think you need to be afraid. There’s no action you can take that will really change things here. You are going to have to report the new income no matter what.

      Either way, I strongly suspect you’d need to remove yourself from the lease and all housing contracts before you could even apply to considered being added as a live in aide. Federal rules are clear that a member of the assisted family cannot be a live in aide.

      Probably the cleanest would be to actually move out, be live out aide for a while (or have someone else fill this role)… then if live in is needed, apply to be added as an aide.

      Hope it goes great for you.

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      1. Thank you so much for your response sleepygirl!! 🙂

        I found out that for NYCHA (low-income housing in New York City), we have a policy called EID (Earned Income Disallowance) where if we get a full-time job after 12+ months of unemployment, NYCHA will exclude my income for 1 year from rent! Woohoo!! I graduate very soon so it is my first job after a long bout of unemployment. Then for the 2nd year, they half my income before counting it for rent. The most important thing is that I have 1 year to figure out how to qualify as a live-in aide especially since I requested more hours (84) and I am getting the mail of approval/rejection of those hours today!

        (3) is def tricky to prove. Theoretically, even with my low income as a caregiver, I could be rooming with someone else in another residence. But I think you’re right, the easiest and cleanest way to do this is to get off the lease, move out, then apply to move back in as a live-in aide. I will see what the local office says first and let you know how it goes!

        I really hope all goes well because NYC is just so expensive to live in. Thanks again!! Hope to update soon! 🙂

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        2. P.S. I should warn you that once someone is removed from a housing contract, some housing authorities won’t let them move back in as a family member, depending on their local policy. Since you’d be applying to be a live in aide, not a family member, I don’t see this applying to you, but just mentioning it. Also, some housing authorities will try to resist or say they are going to deny a former family member or any relative becoming an aide… however, once it’s submitted in writing, legally they should have to approve it with documentation from her doctor.

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          1. I thank you with all my respect because it has been so hard to find information on NYC welfare such as housing, but I know it has to be online somewhere. I found the EID by snooping out related information on your website first (for other states) and then miraculously finding the NYC equivalent. Thank you for making this site!!! Saving lives over here!

            Got it, thank you so much! I’m going to write it all down in case my local office really does decide to reject my request to become a live-in aide as a former family member (I shall pray they don’t)!

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  4. Hello, both my parents are on SSI (they are both 65 years old) and are on Section 8. My mom already has a live-in aide, can my dad ask for his own live-in aide as well?

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    1. I can’t see any reason why your dad can’t request his own aide. There is a possibility they may ask for more documentation on why one aide can’t help both of them. You can always submit the request and see what kind of response you get and take it from there.

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  6. My patient got approved for Section 8 and a live-in aide and she chose me. (Not relatives) We sent over my information to HUD and they said the screening/background check will take up to 2-3 weeks. Once I am approved as her Aide what are the next steps? We would prefer a 2bd apartment in San Diego. Where can I find places that accept section 8? Is there a waiting list and other things we’d have to do in order to move in? And about how long would it take for us to get the apartment

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  7. I took care of my boyfriend’s father , for 5yrs until he passed away . He had nurses that would only come in the morning to check on him , but I was caring for him at night . Could I get paid for caring for him all that time until his passing ? Rite now I’m caring for my boyfriend’s mother could I get paid for watching her and if so PLEASE HELP !

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  8. I am my sons caregiver aka aide and get a $735 check from social security to be his caregiver. I am the applicant and get an additional 889 in spousal and child support, he’s 23 and lives with me what income will the program count as 30 %? he’s more independent than when I first started getting the check and I’m more disabled but we need the money for housing. I’m not giving anything back we are in appeal at the last leg we need every penny his check stopped.

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      1. if this is directed towards me I get SSDI as a caregiver for my 23 yo son whose disabled and we are qualified for the SRAP program . I am searching for a home adequate to meet the needs that we are accustomed to living in since i have ben the lessee head of house hold and pad for housing my entire life and I’m 52 on Dec 8, 2019. this is my first time in the assisted voucher living program and I read as a caregiver my income shouldn’t count but in this situation I’m the unicorn. I am the head and the aide n the search for housing do they count that income since its aide/caregiver income even though I am the head looking for the place?

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        1. Hi Carlene,

          I’m not sure I totally understand but the short answer is:

          If your son applies for housing, he would be head of household and someone could be added as an aide if he wishes (could be your or someone else). The aide’s income would be excluded.

          If you and your son apply together, you can both be included on the housing as tenants. Your income will count.

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        2. p.s. If you have guardianship, you can submit applications on his behalf.

          If not, then it’s up to him. You can support or help him with paperwork, but it would be his decision if he wants to apply and wants to add an aide and wants you to be the aide.

          Hope this helps.

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  9. i take care of my 67 year old mother, she is paralized and has dementia. i signed her up for medicaid waiver. her income is 2020.so they said her personal income would be 791$ how can i get her more income i dont understand

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  10. Im a daughter of a section 8 participant. My mom requested me as a live in aid. 3 months later she requested me to be added as a member of household. Rent went up because of my income. 3 months later my landlord told me i was still considered live in aide cause housing has not issued any documents to then neither to me. But i still paying a higher rent.

    Liked by 1 person

    1. Hi Carmen,

      I’m sorry for the slow response. Has there been any progress? I don’t really know the solution to this as it’s the first time I’ve come across this happening. Did your mom sign forms stating she was removing you as an aide and requesting to have you added as a family member instead?

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    2. P.S. Was it an accident or a formal request?

      If she just misunderstood a form and wrote down “daughter” somewhere she should have written “aide” you can probably get that corrected.

      If she made an official request for you to switch status from being an aide to being a family member, I don’t know if that is possible to change back.

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  11. My landlord is dragging their feet in letting my live in aide come and assist us because the previous landlord for my aide is not cooperating with my tenancy verification. What can I do about this? She has No criminal record and good credit?

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  12. Thank you for the time and energy you have spent creating this website. It has been a valuable resource for me as I research options for my family member.

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