How to Get a Caregiver

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Robin Mead

There are many programs that may be able to provide a caregiver in your home.

Caregivers can assist with personal care (bathing, eating, dressing) and sometimes with household care (shopping, cooking, laundry).

In most cases, you do not need to be on disability to be in a caregiver program, and some people work and are still in these programs (for example, a school teacher who needs a caregiver to help her get in and out of her wheelchair each morning).

Talking to Your Doctor

First things first. Don’t expect your doctor to be able to tell you all the services that are available and how to qualify. Doctor’s are trained in medical care, not social service programs. It doesn’t hurt to ask your doc, but you may find it helpful to find out as much as you can on your own, and then bring your doctor the forms to sign. Another option: If your doctor is part of a hospital or university system, you can ask your doc for a referral to a Social Worker, who may know more about home care options.

State Home Aides

This program is used by many of our readers who are homebound, bedbound, or need help caring for themselves. This program is the best place to start, as it is far better than many of the other options – it offers more hours, more services, and freedom to choose your own aides. These programs are designed to help keep people out of nursing homes and allow you the care you need to stay in your own home. Learn more: The Sleepy Girl Guide to State Home Aides

If You Have Too Much Money

Some people think they cannot apply for State Home Aide programs because these programs are run through Medicaid and you won’t qualify if you have too much money. This is often not true. Even if you don’t qualify for medicaid health insurance, there are often ways to qualify for home aides: How to Apply for a Medicaid Waiver When You Have Too Much Money

California

The state home care program in California is much more flexible and generous than anywhere else. It’s called IHSS. Learn how to apply in the IHSS Advocates Manual. Readers story of getting approved for more hours: How I Got Approved for 228 Hours Per Month in IHSS. Good Facebook groups: IHSS Group and another IHSS Group.

Veterans Homecare

The Veteran’s Administration offers self-directed home care. If you are homebound, you can get extra money for being homebound. We don’t know a lot about these programs. If you are in this program, or if you try applying, please comment below. We would love to know more.

Medicare Aides 

We don’t recommend this program, but it does exist so we are listing it here. Most of our readers on Medicare researched until they figured out a way to get into the Medicaid program instead. Medicare may provide limited home aide services under certain conditions. Although the home aide programs are somewhat sucky, Medicare does provide other in home services that can be good:  physical therapists, occupational therapists, or nurses.  About Medicare Home Care

Alternatives Programs

If you have explored all your financial options and cannot qualify for state home aides through Medicaid waivers, here’s a few other options:  Washington, Georgia, Indiana, North Carolina, and Massachusetts. Also check programs in your state here: State List of Home Services (ignore where it says senior. Most programs will accept disabled people of any age).

Affordable Housing / Free Living Space for Aides

If you are in Section 8, Public Housing, HUD housing or certain other kinds of affordable housing: You may be able to get a larger apartment (or a larger voucher) and offer someone free rent in exchange for being your aide. The amount of rent you pay will not change. You can choose who you want to be your aide, and they can be paid or unpaid, however some housing agencies will have restrictions on who you can choose. How to Request a Live-In Aide in HUD Housing

Private Health Insurance

Some health insurances provide in-home care assistance. Services may be limited or more difficult to qualify for. We have not yet heard from any readers who were successful at getting home aides this way. If you have gotten home aides this way (or tried to) please comment and share your story below. Please inquire with your insurance plan to see what is possible. If you purchased a long term care insurance policy, you may qualify for more services through that.

Local Programs

Not available in many areas. But you can ask! Your local Area Agency on Aging is the best place to start inquiring. Call them even if you are young. More places to inquire: Centers for Independent Living, Eldercare Locator, Palliative Care Programs, Hospice and Palliative Care.

Programs That Help with Household Tasks

Most home aide programs are for people who need a combination of help with personal care (bathing, eating, dressing) and household tasks (shopping, cooking, cleaning). However, a few states run programs for people who only need household tasks. Programs like this are in Massachusetts, California, Tennessee and New York. Also, possibly in Minnesota (if you find out more about Minnesota please let us know). If you know of programs in other states, please comment below and let us know.

For Children

Some states have programs that provide home services for children with disabilities.

Mental Health Waivers

In some states there are programs that provide home support for people with mental illness. Support might include assistance with medication management, household tasks, driving places, organizing things, and coping with symptoms. Try contacting Community mental health centers to inquire if they offer any home support. These programs are now available in Connecticut, California, Ohio, Virginia, Colorado, Indiana, and several other states. You can also look up the names of different waiver programs in your state.

Medicaid Assisted Living & Adult Care Homes

In some states, Medicaid will pay for assisted living programs, which are less restrictive than nursing homes. Please scroll to the bottom of this page to see what is available in your state: Medicaid Assisted Living. Adult Care Homes may be called Adult Family Care or Adult Foster Care. These are small private residents, that provide housing and services to 1 to 5 people. To find out if this is available in your state scroll down on this page of Adult Care Homes. We do not know a great deal about the quality of these programs. If you know more, please comment below.

Transportation

Programs that provide door-to-door transportation for people with disabilities and chronic illnesses. This is not the same as getting a caregiver, but some programs will come right to your door and drivers may be allowed to assist you with carrying groceries or bags: Transportation for Spoonies

Transitioning Out of Nursing Homes

If you are in a nursing home or care facility and want to be out of it, please look into the state home aide programs listed above and ask about programs to transition out of nursing homes. Many of these programs offer financial assistance to help you move, pay a deposit, even pay your first month’s rent! Also, request to talk to the Longterm Care Ombudsman for your nursing home to help explore your options. You can learn more about keeping people out of institutions from the advocacy group ADAPT.

Self Pay

🌷 If you pay out-of-pocket for an aide, in some cases this can lead to higher SNAP, lower rent, or lower taxes. Learn more: How to Document Medical Expenses

🌷 Homeshare is an international network of people who provide support and companionship to a householder in exchange for free or low-cost accommodation.

🌷 From Care.com, here’s a collection of Great Resources and Articles on Hiring Aides

Social Security Disability

If you are applying for disability, the documents created when you apply for homecare (or after you are in the program) can be a great help to your disability application. You will need to take extra steps to make sure Social Security gets the documentation: How Home Aide Programs Can Be a HUGE Help For Your Disability Application

Violet is a Cat

“My roommate helps me with everything. Unfortunately, he goes away for business a lot. We do batch cooking and freeze meals beforehand, but I can’t wash dishes or take out the garbage. Most paid helpers require a three-hour minimum so I hired a local catsitter to help me when he’s gone. It’s about the same amount of work. 🤷‍♀️ She calls me her fake cat. 🤣 🐈 🐱”

More Cool Things That Can Help You Out

🌷 Where to Find Home Aides To Hire

🌷 Ten Secrets for People Who Have Live-In Caregivers

🌷 Meet Jane and Sally (Live in Aide Section 8 Example)

🌷 Lots more resources and help for people who are homebound

🌷 ADAPT is a national grassroots community group that organizes disability rights activists. Many ADAPT members are in medicaid waiver and caregiver programs and they work to protect and expand these programs.

Thanks for Reading

🌷 This page is part of the free online guide: Everything No One Ever Tells You About Living on Social Security Disability

🌷 Learn more here: How To Save Spoons: A Self-Advocacy Guide for ME/CFS

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

🌷 Page Updated: 8/1/19

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🌷 Please let us know if any links on this page stop working. 

🌷 If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

22 thoughts on “How to Get a Caregiver”

  1. I am on disability through SSDI, I have a son who is 28 and has been disabled most of his life.
    I would like to know if social security will pay me to be his caregiver as I am unable to leave my son for any length of time alone and he needs supervision and constant help managing day to day. I am confused about whether it will be a good idea to be under a program through medicaid or social security and how this will affect my benefits.I am 58 and very low income.

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  2. I have been on SSDI for 3 years and I’ve been diagnosed with fibromyalgia and I have knee problems and hard to do house work and was wondering if there is any way I could get home health aid for cleaning my house.

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  3. Other Minnesota programs that help with personal care: https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=ID_000822
    1. Home health aide (HHA)
    2. Home care nursing (HCN)
    3. Skilled nurse visit (SNV)
    4. Home care therapies
    5. Personal care assistance (PCA)

    Although if you can get on a Waiver program you are eligible for things that will “Be for the direct benefit of the person, with the exception of services that provide relief or training for caregivers if the person chooses and benefits from that support (e.g., respite, homemaker, chore services, family training and counseling, specialist services, family caregiver services)”
    https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=ID_000852

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  5. ok this is probably to big of a question but Im kinda at my wits end….My fiancee had a stroke can barely speak and in on a feeding tube. She is in a care facility in portland oregon but the don’t treat her very well at all. she is not allowed anything of her own any more they say it has to be able to be wiped down with bleach. Her tv has been busted for over a month and with this covid stuff going on that means she spends 24 hours a day all alone staring at the wall…. I am not considered family and once manager of the place found out I was one the street kinda(before covid couch surfing cause of stroke and wanting to care for her) they found any reason to try to keep me away… wont get into that but was messed up…. so her mom is next of kin and only other person that visits her. she has her own health probs and is on section 8. I dont have a place for her to go but I am worried every day all day I am going to loss her cause of the poor care lack of mental stimulation, and very little attempt at any therapy …..she could walk with help a little after she first got there and started to recover a little.(they said she never would at all)I helped her walk and even got her to start talking toward the end of being allowed there. now she has leg lock atrophy in one leg I was told I was not allowed to help her but they did nothing to keep up her walking. so now bed ridin, since covid I call everyday(sometimes it takes over 100 calls but I do what I must) she only moans or hums mainly. I am so frustrated and I only want her taken care of like she should be. her mom says she cant take her in cause of her section 8 but never looked into it . she isnt big on putting any effort into anything. I was getting her to visit most days but would have to go and get her on a 2 hour bus ride there then 2 hours back…. she isn’t very good at fightinbg for her daughter and Im treated like anything I say or do is wrong and I have no rights…..as I said probably to complicated of a question but how on earth do I save the love of my life from any of this. I have saved her from a heart attack, fluid on her lungs, and barely from the stroke…. but now I am lost… sorry I know probably way to much….no where to turn and so frustrated I am going nuts.I dont know where start or even what I can do….

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    1. I’m very sorry you are in this situation. I do not know the solution. You might start by reaching to your state’s disability rights organization. Also check protection and advocacy programs for people with disability in your state. You could also try your local free legal aide center for advice and guidance on next steps. Very much hope you will find help in this situation. 💕💕🌷

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  6. What if one of your specialists sees you at your home for regular appointments? Do they listen to the doctor about the home’s condition more than the home health aides who are supposed to come once a week, but sometimes don’t? Some of the home health aides are supportive and some seem to want me to be more disabled than am.
    How do I protect myself?

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    1. I’m sorry I don’t know the answer to this question. A doctor’s opinion is usually very important.

      If you are in a Medicaid program, you might be able to switch to self-directed I care if you feel like the aides you have are not a good match for you. That way you can choose your own aides.

      Or perhaps you could ask the agency for different aides. I hope you can find people who support you without judgement.

      Liked by 1 person

  8. You can get nurse’s aides, palliative care, neurotransmitters, genetic testing, all kinds of goodies, if you just ask. I do my homework and just email my list to my primary!

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  9. My wife is talking about getting a caregiver for her dad soon so thanks for sharing this. I like your point about how there are programs that assist seniors with household tasks and shopping. We’ll definitely look into this more so we can find someone to help him function while still living in the comfort of his home.

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  11. Hi, thank you for this! I found that my area is included in the shortages for both mental health and primary care providers. What process do you have to go through to get your claims approved when you do the telehealth appointments and are there specific doctors/websites that you use that Medicare approves of? Thank you!

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  12. ON TELEHEALTH or TELEMENTAL HEALTH-Don’t take no from the Experts. According to the Northeast Telehealth resource above, I can’t get online therapy in my home. This is not true. I’ve been told several times I cannot get telehealth in my area because My county is not Rural and there are no approved locations for me to go. Not true. I live in Warren County in Lake George in a park but 3 miles from me is a major city but it is not Rural. But to Medicare there is a shortage of quality mental health providers. There’s a place on the government database datawarehouse.hrsa.gov where you can “Find shortage Areas by Address” to see if telehealth or Telemental health is available where you live as an exception because of a lack of providers. I have done telehealth with three different therapists here in the last four months. Psychiatrists are covered but I can’t find any in NYS. I found therapists on Psychologytoday.com and from local resources for mental health.

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    1. This is so helpful. Thank you. After you figured out that you were in a shortage area, how did you find a doctor that would accept medicare and offer telehealth?

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  13. I looked into caregiving in my state. It all sounds so overwhelming. I do not understand the rules and the information on the application they want I do not understand. I would think the fact that I am disability would make this easier but it does not appear that way. – Michelle

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    1. Hi Michelle,

      I really hope you can get the help you need. I am sorry to say that you are correct. In most states the fact that you are on disability will make no difference. 😦

      You might try contacting your local area agency on aging or your local aging and disability resource center. Even if you are young, if you have disabilities they may be able to help you.

      They may have someone on staff that can help give you information on programs or help you with the application.

      If you need help with personal care (bathing, eating, dressing, etc), you can apply for a Medicaid waiver program. Please feel free to send me questions or post questions here if helpful.

      If you don’t need help with personal care, there may or may not be any programs in your state. It depends on your area, but it is worth asking.

      I hope this helps. 💕💕

      Liked by 1 person

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