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
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.
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.
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
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.
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.
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.
🌷 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
🌷 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
🌷 Page Updated: 8/1/19
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