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 caregivers 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. In California it is called “IHSS”.
Do I need to be on Medicaid?
No. In most states, you can apply for this program even if you are not on Medicaid. Please see below for what to do if you do not meet the financial criteria.
Do I need to be on Disability?
No. You can apply even if you were turned down or you are still applying for disability. I have met several people who were approved for this program even though they were denied disability and still appealing their disability case. 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 if I got turned down for Medicaid? What if I have too much money for Medicaid?
You can still apply for this program. The financial criteria are completely different than for Medicaid health insurance. See below for what to do if you are turned down or told you have too much money.
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.
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?
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.
Tip: In some states you will be eligible for twice as many hours if you chose self-directed care! This is because agency care is more expensive.
How does this program work? What else do I need to know?
💠 Comprehensive guide with a lot more information about waiver programs.
💠 State by state list and information on waiver programs (this site is for seniors, but most of these waivers are available to younger people with disabilities as well)
How to qualify
In most states, you will be eligible if you need help with bathing, eating, dressing, mobility and toilet. If you need partial assistance, or assistance only some of the time, in some states you may still qualify. In some states, you must require assistance in each of these areas (i.e. if you need no help with toilet, you will not qualify).
What if I don’t need 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. It will usually be less hours and they will send a caregiver from an 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).
💠 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)
Where to apply
💠 Contact your local social services department
💠 Contact your local area agency on aging (do this even if you are young)
💠 Read this article on questions asked during a Medicaid waiver interview.
“I have too much money”
If you are told you have too much money to qualify try this:
💠 Ignore what you are told. The people who work at Medicaid often tell people the wrong thing.
💠 Make sure you are getting information about waivers and long term care. Do not look at the information for Medicaid health insurance. The financial limits are totally different.
💠 Research everything yourself. Find the policies yourself online. Request a written copy of the financial policies for long term care.
💠 Never ever ever get scared off by what someone says on the phone. Research the policies. If you think you are eligible, apply on paper and get a decision in writing.
💠 If you discover that you really are not eligible, look into opening a miller trust a special needs trust or a pooled income trust for people with disabilities.
💠 Also, look into Medicaid spend-down programs that may allow you to qualify by paying for part of your care yourself.
💠 Also, look into Medicaid buy in programs for working adults with disabilities. In some states you can qualify even if only working a very small amount at home.
💠 If you have an inheritance or wealth, consult with a Medicaid planning specialist, or with a lawyer who specializes in Medicaid estate planning.
💠 If you have gotten turned down, and you believe you are eligible, always appeal. Appeal in writing. Once again, never ever let them turn you down over the phone or in a meeting. Get it in writing.
💠 You do not need a lawyer to appeal. You can do it yourself. 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. 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. Once again, you can also appeal on your own without a lawyer.
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.