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).
Programs vary quite a bit by state. The services listed on this page are for the US. If you are in another country, please take a look here.
In most cases, you do not need to be on disability to be in a caregiver program, and some people work full-time 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
Alternatives to State Home Aides
We suggest starting by looking into state home aides, since this will give you the best services. If you have explored all your financial options and cannot qualify for state home aides, 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).
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.
Affordable Housing / Free Living Space for Aides
If you are in Section 8 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. Learn more about How Rent and Bedrooms Work if You Have a Live in Aide. In most cases, your aide can be anyone you choose, however some housing agencies will have restrictions on who you can choose. How to Request a Live-In Aide in HUD Housing
Medicare may provide very limited home aide services. They can also provide skilled care in your home: physical therapist, occupational therapist, or nurse. Please see the state home aide programs above. Many of our readers on Medicare find that the state home aide programs are a much better option. How to Qualify for Medicare Home Care
Some private 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.
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, 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. Also check this State List of Non-Medicaid Programs, requirements to qualify will vary by state. (Ignore where it says seniors, most programs are available to people with disabilities of any age).
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.
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.
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. Please save copies of anything your doctor signs or fills out. Also, ask your caseworker for copies of your file and copies of all assessments and submit these documents to Social Security.
🌷 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
More Cool Things That Can Help You Out
🌷 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.
Updated January 2019. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working.