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.
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).
🌹 Don’t Ask Your Doctor
First things first. Don’t expect your doctor to be able to tell you about what help and services are available. Most doctors do not know what is available or how to help you qualify. Your doctor may be very nice, but she may give you wrong information or may tell you that what you are looking for is not possible. The best thing to do is find out everything for yourself, then bring your the doctor forms to sign, and explain to your doctor how the program works. If you are looking for help and support in navigating the process, see section below on “getting help.”
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.
Long Term Care / Waiver Programs / Home and Community Based Care
This program provides the most services, however it is only available to people with severe needs. If you sometimes need assistance with personal care (eating, bathing, dressing, bathroom, mobility, etc) you may qualify, you may qualify for a homecare waiver program that will give you a caregiver. The amount of assistance and level of need to qualify will vary by state.
This program can often provide assistance with household care (shopping, cooking, cleaning, doctor’s appointments, etc). In most cases, there is no cost. Hours vary. It is often 20-30 hours per week.
You can select a caregiver through an agency or hire the person of your choice. It is often possible to hire a friend, neighbor or family member. Read How Teri Got Care Through a Waiver program.
Waiver Programs (Try Again!)
Waiver programs are run by Medicaid. Many people never apply because they think they won’t qualify for Medicaid financially or because someone in their local Medicaid Social Services office told them something discouraging or confusing. Please persist. The financial eligibility for this program is completely different than for other forms of Medicaid. See the link above for more information.
“I called my Department of Social Services and Medicaid for FOUR YEARS and asked to apply for a Medicaid Waiver for my daughter. Every time they discouraged me and told me my daughter would not qualify. Finally, I insisted on an appointment with a nurse for screening. After the interview, she told me my daughter definitely qualified, and she should have applied years ago.” – Petunia
🌹 Never Take No For an Answer Over the Phone
Some people start this process by calling Medicaid. Then the person who answers the phone tells them something, and whatever that something is, it causes the people to hang up and never apply! Someone may tell you that you have too much money to qualify, or you need to already be on Medicaid, or your illness is not severe enough to qualify, or they don’t have any home care programs.
This statements are often NOT TRUE. Here’s How to Respond When Someone Tells You That You Can’t Get in a Medicaid Program and here’s a few sentences you can say that can magically turn a “no” into a “yes”
Make sure to read all links on the waiver program above. It is common for people to get turned down because they answered questions too quickly and did not take the time to think about and explain each and every small need they have and each and every kind of assistance they require.
🌹 Household Help Programs
If you need help in your house (cleaning, cooking) but do not need any personal care (bathing, feeding, dressing, mobility), in some (but not many) areas there are programs that provide this service.
This service is available for free in some areas, but these programs have been cut in many places. If your area has this service available, they will usually send someone from an agency to your home a few hours per week. Try calling your local Adult Services Department or social services agency. Also, try calling your state agency on aging (even if you are young, still call here).
🌹 Agency Care or Self-Directed Care?
Many programs will offer you the option to get an attendant through an agency, or to select your own attendant. There are pros and cons both ways. Learn more.
Finding a Great Caregiver
Mental Health Home Support (Medicaid)
If you have a psychiatric condition, in some areas, you may be able to get in a program that provides mental health support in your home. This person comes to your home and offers you support with medication management, household tasks and coping with symptoms. They can also accompany you to your doctors or other life activities. In some states, they may be able to assist you with shopping, cooking or cleaning. How to find this service: This service is called different things in different states and may not be available in all areas. Try contacting behavioral health agencies in your area and asking how you can get mental health support in your home. You can also try contacting your state Medicaid office to see if they can point you in the right direction.
🌹 Hiring a Caregiver Yourself or Offering Housing
Some people pay and hire caregivers, or offer a free place to live in exchange for help in their homes. Here are a few good websites for finding caregivers, and finding information on legal and logistical questions: Care.com and Caring.com
Homeshare is an international network of people who provide support and companionship to a householder in exchange for free or low-cost accommodation.
Mental Health Waivers
These programs offer the same services described above, and may have other kinds of support as well. These programs are run by Medicaid, but don’t let that scare you off. Even if you are not eligible for regular Medicaid, you may still be eligible for waiver programs. Waivers for mental illness are now available in Connecticut, California, Colorado, Ohio, and elsewhere. You can also look up the names of different waiver programs. Make sure to ask about or research exactly what kind of mental health background and treatment you need to qualify.
Medicare may provide assistance in your home from a personal aide, and (if needed) physical therapist, occupational therapist, or nurse. The services in this program are very different than Medicaid, and most people prefer to explore all their options to see if they can qualify for Medicaid Waiver home care.
Medicare home care is designed to be short term (20 days of care). It may be possible to continue or renew this. The home health aides will provide personal care (bathing, feeding, dressing). It is unclear if they will offer other kinds of assistance. The number of hours may be low, and some people report that they were approved for a just a few hours per week.
To qualify, your doctor must sign a form stating these two things:
- One: You must be homebound (leaving the house is difficult and infrequent and requires assistance). You do not need to be in your home 100% or the time.
- Two: You must have a medical need for a skilled care (this can be intermittent care from a nurse, or from a physical or occupational therapist) in your home.
Learn more here and find an agency here. Some people are told that even though they meet the criteria they cannot get home care, or that Medicare home care is only short term do not listen if they tell you this.
Move to California or Minnesota
From what we can tell, Californiaseems to have the best caregiver programs that provide the most services to the widest range of people. Here’s a good Facebook group for people in caregiver programs in California.
There are two different home care programs in California: IHSS and IHO. It is best to apply for both, if you are eligible. IHO has a waiting list, but offers more services. There are also additional services available through IHSS, including protective supervision and paramedical care, if you apply for them. Some people continue to appeal their cases until they get the correct number of hours to meet their needs – some people even get 24 hour at-home care.
If you are being charged a Share of Cost, check out: How to Avoid Share of Cost for Medi-cal and IHSS
Minnesota also has very good waiver programs. In addition to home aides, people in Minnesota can also get help with other kinds of support. Here’s a list of some of the different types of extra help people in Minnesota can get: Examples of Supports and Services for People in Medicaid Waiver Programs
🌹 Private Insurance
Some private insurances provide in-home care assistance. This may be limited to help with bathing, eating and dressing, and may not include services like cooking, cleaning and shopping. They may assign an aide through a home care agency. Please inquire with your insurance plan to see what is possible.
The links above on this page will show you where to go for more information on each program. If you need help navigating the system, here are a few ideas:
– Great ideas for: How to Get a Social Worker
– Try these places:
- Area Agency on Aging (Call them even if you are young!)
- Centers for Independent Living
- Eldercare Locator (Again, any age)
- Palliative Care Programs
- Hospice and Palliative Care (some are for end-of-life only, some serve others)
– Very important: No matter what you are told, if your condition is severe, make sure to look into Medicaid Waivers. Home care through Medicaid Waivers is much (much, much, much) better than home care through Medicare or private insurance. Many people wrongly think that they cannot get on a Medicaid Waiver because they are not financially eligible for Medicaid. This is often not true. There are many different ways to qualify, and there are even lawyers and Medicaid planners that specialize in helping people qualify. See links on waiver programs above for more information.
If You Are Applying for Disability
You do not need to be on disability to qualify for most home care programs. Just ask Azalea: How Azalea Got Turned Down for Disability but Approved for a Caregiver. If you are in a home care program, the documents from this 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 or contact person for copies of your file and copies of any assessments that were done when you joined the program. Submit these documents to Social Security. It can help a lot.
Area Agency on Aging
Your local Area Agency on Aging can be an excellent resource for caregiver programs, no matter what age you are. You can call them ask them for information on caregiver programs in your area, and you can often apply directly through them.
ADAPT is a national grassroots community group that organizes disability rights activists. They also have several Facebook groups. Many ADAPT members are in medicaid waiver and caregiver programs and they work to protect and expand these programs.
You do not need to be on Medicaid now to qualify for Medicaid funding for Nursing Homes, Care Homes and Assisted Living. If you have assets or income above the Medicaid limit, it’s a good idea to look into Medicaid Planning to protect your savings or income from all being taken.
If you are receiving Social Security, when you move into a Medicaid facility, you may lose your Social Security check. In some cases, Medicaid Planning can prevent this.
We encourage people to explore the options for Medicaid waivers above. This will help you stay out of facilities and remain in your own home and community. If you’ve decided to explore looking into a facility, some more information is below.
🌹 Medicaid Nursing Homes
If you are unable to care for yourself and do not have funds, Medicaid will pay for a nursing home. Some private nursing homes dedicate a certain number of beds for Medicaid patients. Private facilities may have higher quality of life. Inquire at all nursing homes in your area to see what is available.
🌹 Medicaid Assisted Living
In some states, Medicaid will pay for assisted living programs. Assisted living may offer more independence than nursing homes. Please scroll to the bottom of this page to see what is available in your state: Medicaid Assisted Living.
🌹 Medicaid Adult Care Homes
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
🌹 Leaving Nursing Homes
If you are already in a nursing home and want to be out of it, please look into the home care medicaid waiver programs listed above. There may be programs available to help you transition back into the community and get care in your home. 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.
🌹 Special Caregiver Benefits
If you have a formal paid caregiver, or an informal friend who helps you, here’s a few things that you may not know that may really help you out: Read this if you have a Live-In Caregiver and read this if you have a caregiver funded through a Medicaid Waiver program (may also be called IHSS or Home and Community Care)
Some states have programs that provide home services for children with disabilities.
Updated Oct 2017. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working.