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. Doctors are not Social Workers and 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.
The Veteran’s Administration offers self-directed home care. If you are homebound, you can get extra money for being homebound. I don’t know a lot about these programs. If you are in this program, or if you try applying, please write me. I would love to know more.
Long Term Care / Waiver Programs
This program provides the most services, however it is only available to people with severe needs. If you need assistance with personal care (eating, bathing, dressing, bathroom, etc) you may qualify, you may qualify for a homecare waiver program that will give you a caregiver. This program can also 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. 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 page above for more information.
Funding for the Person who Cares for You Now
In the waiver programs listed above, you may select your own caregiver. You can select a friend, neighbor, family member, or you can advertise to find someone. In most states, you cannot select a spouse.
🌹 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. And 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”
🌹 Household Help Programs
If you need help in your house (cleaning, cooking) but do not need any personal care (bathing, eating, dressing), 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 part-time nurse, personal aide, and (if needed) physical therapist. The personal aide may be able to assist you with caring for yourself and your home. To qualify, you must be have these two things: One: You must be homebound (leaving the house is difficult and infrequent). Two: You must have a medical need for a licensed nurse (for example, if you need injections or you have a wound that needs dressing). Learn more here and find an agency here. Be warned: Medicare home aides programs offer less services than home aides through waiver programs. You may not find this program as helpful.
Move to California
From what I can tell, California seems 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.
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.
Nursing Homes and Assisted Living
If you are unable to care for yourself and do not have funds, Medicaid will pay for a nursing home. In some states, Medicaid will also pay for assisted living programs. You do not need to be on Medicaid now to qualify. Some private nursing homes dedicate a certain number of beds for Medicaid patients. Private facilities may have higher quality of life.
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. 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.