What’s a waiver?
Waiver programs are designed to help people with disabilities stay in their homes instead of moving to nursing homes.
This program provides free home aides or care attendants to people who are not able to care for themselves. It is designed for people who have a high level of need for care.
Waiver programs are called different things in different states. It may not be called “Waiver” in your state. It may be called “medicaid long-term care” or “home and community based services” something else.
Do I need to be on Medicaid?
No. This program is funded through Medicaid, but in most states, you can apply for this program even if you are not currently on Medicaid.
You will need to be screened for Medicaid, but the financial criteria for Medicaid waivers is VERY different than for Medicaid health insurance in some states. For example, in many states they will not consider your spouse’s income at all. They may have completely different income regs and criteria and there may be special trusts you can set up so your income or assets do not count.
There are MANY different ways to qualify for Medicaid. Many people think they are not eligible when actually they are. How to Apply for a Medicaid Waiver When You Have Too Much Money. If you have been given a Share of Cost, please see this page as well. There may be much better options.
Do I need to be on Disability?
Depends on your state. In most states, you can apply even if you were turned down or you are still applying for disability. If you are applying for disability, make sure to request and collect your entire file from the waiver program. Then send everything in your file to Social Security. It will help with your disability application.
What services can a caregiver provide?
The programs are different in every state. In most states, a caregiver can provide help with bathing, eating, dressing, toilet, as well as help in your home with cooking, cleaning, shopping, doctor’s appointments and errands.
How does it work? How hard is it to get approved?
Real life stories from people with ME, Lyme and other chronic illnesses who are in this program. What worked, how they got in, and what kind of help they are now getting: How I Got Approved for a Home Aide
Can they provide childcare or help for my family?
No. They cannot care for your kids. They cannot shop, cook or clean for anyone else in your home. The services are only for you.
What is the cost?
Free for most people. If your income is high, you may be required to pay a portion, but there are regulations that may be able to keep you from being charged this way. How to Apply for a Medicaid Waiver When You Have Too Much Money
How Many Hours Per Week? How long to get approved?
Varies quite a bit. Here’s how it worked for others: How Did You Get Home Care? (Survey Results)
Who will be my caregiver?
You have a choice:
💠 Agency directed – They will send someone from an agency
💠 Self-directed – You can hire anyone you want. Can be a friend, neighbor, brother, sister, parent, child, etc. In most states, it can not be a spouse. If you chose this option, you or someone in your household must be able to manage hiring, supervision, timesheets, admin, and paperwork. The person you chose must pass a background check.
💠 Combo – Some people select an agency and then arrange for a friend or family member to apply for a job at that agency and be assigned to their case. This way, the agency handles the paperwork.
What’s better? Self-Directed or Agency Directed?
💠 Great question, for which there is no simple answer. There are pros and cons both ways. Learn more: How to Decide: Agency Care or Self-Directed Care
How does this program work? What else do I need to know?
💠 Waiver guide with a lot more information about waiver programs.
💠 Facebook Groups for People in Medicaid Home Care – Learn from the real experts.
Where to apply
How to qualify
💠 If you need assistance with personal care (bathing, feeding, dressing, etc) plus assistance with household needs (shopping, cooking, laundry, etc) you will qualify.
💠 If you need assistance with partial or occasional assistance with personal care (bathing, feeding, dressing, etc) plus assistance with household needs (shopping, cooking, laundry, etc) you may or may not qualify.
💠 If you need assistance just household needs (shopping, cooking, laundry, etc) and do not need any kind of personal care, you will not qualify.
Many people get turned down for waiver programs, or have to apply more than once because they answer the questions about personal care questions too quickly, or because they feel shy or embarrassed, or because they do not meet with their doctor first to talk about all their personal care needs.
It’s very important to let them know any kind of assistance you need in the areas listed above. Learn more about questions asked during a Medicaid waiver interview.
For more information on qualifying take a look at these: Sample Criteria for Applying for Medicaid Home Aides
What if I don’t need any help with personal care? I just want shopping and cleaning.
You will not be eligible for a waiver program. In some areas there may be a simpler program you can apply for. However, in many areas this kind of simpler program is not available. The simpler programs are often a few hours per week of care, using a home aide sent from a health care agency. Try calling your local Adult Services Department or social services agency. Also, try calling your area agency on aging (even if you are young, still call here).
In California, there is an excellent program called In Home Support Services that may be able to provide you with a home aide even if you do not need personal care and only need help with household tasks.
💠 You have an interview with Medicaid (can be in your home or over the phone).
💠 Your doctor fills out a form. (Please talk to your doctor. Tell her you are applying. Tell her she will be getting this form. Tell her ALL of your needs with bathing, eating, dressing, mobility and bathroom. Don’t be shy. If she doesn’t know your needs and fills out the form the wrong way, you will be automatically denied.)
💠 You fill out financial forms (if you are already on Medicaid, this step is skipped)
What else do I need to know?
💠 A bunch of helpful tips on How to Get Extra Help if You Are in a Medicaid Waiver Program
If you get turned down or run into a problem
💠 If someone tells you that you cannot apply, ignore what you are told and research the regs yourself. The people who work at Medicaid often tell people the wrong thing. How to Respond When You Are Told You Can’t Get Medicaid
💠 No matter what happens: Never Take No for an Answer Over the Phone. It is common for people to call and be told they are not eligible or cannot even apply when it isn’t true. Always request that the denial be made in writing and ask to be given information on your rights to appeal.
💠It is also common for people to be sent to the wrong program. Make sure you request to speak to someone who screens applicants in Medicaid Waivers and Medicaid Long Term Care. Use the links above to find the name of the specific program you want to apply for.
💠 If you get turned down and wish to appeal, you do not need a lawyer to appeal. You can do it yourself.
💠 If you would like a lawyer, do not bother contacting disability lawyers, as they will not know anything in this area. In some cases, you may be able to get assistance through your state’s disability rights legal organization and/or through your local nonprofit poverty legal programs.
💠 You can also contact nonprofit disability rights legal organizations in your state. Also contact your local Center for Independent Living and ask if they have an advocate or lawyer who can help you.
💠 Some people also find it helpful to contact the office of their congressperson.
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.