by Lily Silver
Artwork by Robin Mead
I have been homebound for many years, and for almost all of them I had no idea that there were programs out there that could help.
If you are homebound, or bedridden, or have difficulty leaving your home, please take a look and see if there is there is something out there for you.
You do not need to be on disability to apply for most of these programs. You also do not need to be completely homebound. Just ask Azalea: How Azalea Got Turned Down for Disability but Approved for a Caregiver.
Many areas have meals-on-wheels or similar programs that deliver meals to you. These programs will often be free or low cost. Even if the program says it is for Seniors, you should still call them. Sometimes they will deliver to younger people with disabilities. Contact meals on wheels or your local area agency on aging to see if there is a program in your area.
Some local pharmacies will deliver to your home. You can also fill prescriptions through online pharmacies, and some will accept insurance. One reader recommended pill pack for ordering meds online.
So many people wrote me with good ideas for grocery shopping, I had to create a new page! How to Shop Without Standing Up
Finding the Best People to Live With
When you are homebound, the people in your house matter a LOT. Those are the only people you see! Here's How to Find Wonderful Housemates & Caregivers
Homecare Waiver Programs
If you need assistance with personal care (eating, bathing, dressing, etc.) You may qualify for a wonderful homecare waiver program that will give you a caregiver. In many programs, these caregivers can also assist with other activities (shopping, cooking, cleaning, doctor's appointments).
Programs vary wildly by state. I have seen it be as high as 70 hours per week and as low as 5 hours per week. This program is run through Medicaid, but you do not need to be on Medicaid to apply, and the financial rules for qualifying are sometimes very different than for other Medicaid programs. In some cases you can qualify even if you have money or even if your spouse works.
Funding for the Person who Cares for You Now
In the waiver programs listed above, you may select your own caregiver, and can hire a friend, neighbor, family member, or anyone you choose. There is no cost to you. The salary is paid by the state.
If you need help in your house (shopping, cleaning, cooking) but do not need personal care, in some areas you may be able to get into a simpler program that provides just household assistance. Unfortunately, these programs are not available in all areas. These programs vary. Usually they will usually send someone from a home care agency and may be a few hours per week.
To see what is available in your area, 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. It is best to call both places because different services may be available.
The Veteran's Administration offers self directed home care. If you are homebound, you can get extra money for being homebound. You can also get all kinds of other home-based services. 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.
Most cities, and some rural areas, have para-transit programs that will take you anywhere. Many will go anywhere in your city, and sometimes they will travel to other areas. These programs are free or low-cost. They will provide you door-to-door transportation in a van that is wheelchair accessible. You do not need to be in a wheelchair to qualify.
In some areas, these programs are difficult to qualify for and in other areas, they are very easy. Contact the public transportation agency in your area. How Roselyn Got Approved for Paratransit by Using the Magic Words
Taxis to Doctors (Medicaid)
Medicaid will provide free taxi rides or other transportation to all your doctor's appointments. Contact your Medicaid provider for more details. In some areas, you will need to apply for this. In other areas, you do not need to apply. If you are on Medicaid, you can get this automatically.
This is an important time for people with disabilities to be included. The current administration is trying to cut almost every program and service on this page. You can vote at home by absentee ballot.
You can also make your voice heard. You do not have to leave the house, or even leave your bed! How to #Resist Without Using All Your Spoons.
There are also a million great ways to get involved online at #MEAction, an international network of patients empowering each other to fight for health equality for CFS/ME.
Outside the US
Most things on this list are for people in the US. For other countries, please see: How to Be Un-American
Visiting Nurse, Personal Aide & Physical Therapist (Medicare)
Medicare may provide assistance in your home from a part-time nurse, personal aide, and (if needed) physical therapist.
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.
Visiting Nurse (Medicaid)
Medicaid may provide part-time visits from nurse in your home. To qualify you must be on Medicaid, and your doctor must order the service. To find out more, talk to your doctor and contact home care agencies in your area.
Both Medicare and Medicaid may provide home visits from a doctor. I do not know if other insurance companies offer this service. As you may have figured out, it is not that easy to find a doctor who will come to your house! Here are some ideas for: How to Get a Doctor to Come to Your House
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.
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.
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, and Colorado. Ohio is just starting one called Specialized Recovery Services. Other states may have them as well or may be starting them. Sometimes they are tricky to find. You can contact your medicaid office, and ask to speak to someone who handles medicaid waivers. 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. Most waiver programs have very specific guidelines and if you don't know them, you may find it difficult or impossible to get into the program.
Online Homebound Support
It's hard for homebound people to meet other homebound people! A reader here just started a new Facebook group: “This is a support group for those with ME/CFS who are housebound or bedridden. It’s a safe place to help each other, compare notes, ask advice, and share ideas.” For people in all countries.
State Nursing Homes.
You do not need to be on Medicaid right now to be accepted into a nursing home paid for by Medicaid. If your condition is very severe, and you are low-income and assets, Medicaid will pay for this service in any state. If you are married, Medicaid will not count your spouse's salary. If you are unable to care for yourself, a nursing home may not be an ideal solution, but it will provide you with the food, housing, care, and assistance you need.
It does not have to be a permanent move. There are programs designed to help you transitioning back into the community. To qualify, in most states you must be unable to regularly eat, dress, bathe, and go to the bathroom without assistance. If your condition is not severe enough, they will not accept you.
State Assisted Living.
If your condition is severe, some states provide assisted living, which is similar to nursing homes, but more independent. I do not know much in this area, however, I believe that if you are low income and assets, Medicaid may pay for part or all of this service. Again, it is not available in all states.
Other Nursing Homes.
Some private nursing homes dedicate a certain number of beds for Medicaid patients. These facilities may have higher quality of life. Once again, you do not need to be on Medicaid right now to be eligible, but your condition must be severe.
Bored While Resting?
Colleen Steckel has created this great list of activities you can do from home or from bed.
"I've had a number of times where I needed a notary (for Power of Attorney and other documents). A traveling notary who would come to my house was not cheap. I called my State Representative's office and they offered to send staff over (for free!) to notarize documents. It seems like it should be a simple problem to solve, but I was almost in tears at the offer. We had to reschedule twice, but they took care of all the notarizing." - JM
"We have had acupuncturists and a cranial osteopath come to our home. Insurance paid for part of it. We also found a service that would send someone to our home to insert a PICC line. You can also find people who give massages it will come to your home. And sometimes a lymphatic massage might be helpful if people have sensitivities or if deep massage might release something that could be not so great for a CFS patient." - JD
"I've had a hard time finding people to be caregivers. I finally discovered a site called care.com which has been just great." - JD
Updated April 2017 by Lily Silver. Please comment below with stories, questions, input or ideas. Please let me know more ideas to add to this list.