This page is for people in Medicaid waiver home care programs. Medicaid Waivers may also be called “Home and Community Based Care” or “IHSS” or “Medicaid Long Term Care.” These programs are run by the state and provide home attendants to people with severe needs. If you are not in a Medicaid Waiver program, and would like to apply, check out: How to Find Medicaid Home Aide Programs in Your State and How Apply for a Home Aide.
Your aide may be eligible for backpay
If you have an unpaid attendant, and you were recently approved for your attendant to get paid, your attendant may be able to submit time sheets back to the approval date. Look at your paperwork to see when that is. Please don’t look at the date the letter was written, look at the date that is actually listed as approved for services (it may be several weeks or several months earlier than you realize). This may vary by state.
If you are already on services, but recently got an increase in approved home attendant hours, these same rules apply. You may be able to submit timesheets back to the original eligibility date. If your decision was an appeal, this may be many months. If it was not an appeal, it may still be several weeks.
Your aide may not have to pay taxes
If your caregiver lives with you, they may not have to pay any taxes if they file for a difficulty of care income tax exclusion.
Your aide may get health insurance
In some states, if a caregiver gets a difficulty of care income tax exclusion, their income will not count for Medicaid or Medi-cal.
This means if you are a caregiver, you can qualify for Medicaid even if your income is above the limit.
There is a very good chance that your Medicaid caseworker won’t know this policy. It may help if you research the policy yourself and/or keep asking questions and speaking to supervisors until you can find someone at the Medicaid office who knows the policy in this area. Once you know the policy, you can show it to the person processing your Medicaid application. Or on your application write “excluded income” and attach the policy.
You may get extra services
Many waiver programs have other types of services and benefits available. Ask your caseworker for a list of other benefits that are possible through the program you are in. If you are given the choice of more than one managed care agency in your state, then different agencies may offer different benefits. Examples of common services:
- Pest control
- Transportation to doctor
- Transportation to other places
- Home-delivered meals
- Dental care
- Vision Care
- Medical Supplies
- Personal Emergency Response System
You may be able to get assistive technology
Some waiver programs offer “Assistive Technology” purchases. Inquire with your caseworker or check the rules for the program you are in to see if assistive technology funds are available. There is a wide, wide, wide range of things you may be able to purchase with these funds. To be eligible, your doctor will have to verify that the item will help you communicate, or help you maintain your independence and live in the community, or help you with Activities of Daily Living.
We have heard from readers who have purchased: ipad tablets, wheelchair lifts, weighted blankets, and specialized computer equipment.
You may be able to get home modifications
For both renters and home owners: Some waiver programs offer Home Modifications or Vehicle Modifications. Inquire with your caseworker or check the rules for the program you are in to see if home modifications funds are available. Home modifications could include renovations and repairs to improve the safety of your home, or to make your home more disability accessible. Examples:
- Walk-in bathtubs
- Widening doorways
- Evening uneven floors
- Installing grab bars
- Adding wheelchair ramps
- Improving lighting for safety
Help with Social Security disability
If you are applying for disability, or if you are already on disability and coming up for review, your file from your Medicaid waiver program can be very helpful. If you wish to do this, you can contact your caseworker and ask for a complete copy of your file.
Don’t just get the plan of care they give you. Get everything. Especially important are all records from every caseworker visit (there should be one record from every time your case worker meets with you), the detailed records from your initial screening (if you first applied in the past three years), screening records from renewal assessments, plus any forms or letters signed by your doctor.
Once you have everything, you can send it to Social Security. If you are being reviewed, enclose it with your review paperwork. If you are still applying, give it to your lawyer, or see this page: How to Submit
Your spouse can be your aide
In some states, you can hire your spouse to be your aide. Some people even move states to be able to do this. Here’s a list of States That Allow Spouses as Aides
Your parent can be your aide
If the disabled person is age 18+ this can be done in any state. If the disabled person is a child, this can be done in California and Minnesota. Some families move states to receive this service. If you know of other states where this is allowed, please comment below.
Your SSI check may increase
This applies in two circumstances:
- Your aide is your spouse or
- You are under age 18 and your aide is a parent
Maximum SSI is $750 in most states. Slightly higher in a few areas. $910 in California. If your SSI check is lower than this, it could be because of something called “deeming.”
Income to a spouse or parent can make your SSI check go down. This is called “deeming.” But there is a special rule for people in state home aide programs! The income will not be deemed. Your SSI caseworker probably won’t know this rule, so be sure to show it to them: Deeming In Home Support Services. Learn more about: SSI regs that can affect your check
You may be able to get increased hours
If you are in need of more caregiver hours, and your request is denied, you have the right to appeal and many appeals are successful. Here’s a guidebook on appealing to get more home care hours. This book is for California, but some of the info in it would be helpful for any location.
You may get lower rent or a larger apartment
If you live in Section 8 or certain types of other subsidized housing, your rent may be lower if the person you live with is your aide. If you currently live with an aide, or need an aide, you may be eligible for a larger apartment to accommodate a bedroom for the aide. Learn more about How Rent and Bedrooms Work if You Have a Live in Aide
Another way you may be able to get increased hours
If you have an unpaid caregiver in your home, you may be able to qualify for “respite care.” For example, if you live with a parent or relative who is help caring for you and not getting paid. Respite care will give you additional paid hours to your aides. Ask your caseworker, as this varies by state. This is ironic and strange, but that is how respite care works in some states. If you have help in your home you will get MORE home aide hours. If you live alone, or have no unpaid aide at home, you will get LESS hours.
You Can Selected Self-Directed Care
If you are in a waiver program, you are given a choice: Select your own home aide, or hire someone through an agency. There are a whole bunch of advantages and disadvantages both ways: How to Decide: Agency Care or Self-Directed Care. In some states choosing self-directed care will mean:
- Your aide can drive you places
- Your aide can get higher hourly rate (in some states)
- You can have more options to find someone who accommodates special needs
- You can select who you want to be your aide
If Your Aide is Live-in
If your caregiver lives with you, please see this list of Extra Benefits & Services if You Have a Live-In Caregiver. Depending on your situation, this may include, an increase in food stamps, larger living space or lower utilities.
You may be able to get extra supports
Some waiver programs have funds available for extra supports, but they do not tell you how you can spend these funds or what type of items can be approved. Ask your caseworker and research the guidelines in your state to see what is available. Here’s some Examples in Minnesota
- Laundry reimbursement
- Lawn Mowing and Snow Removal
- Pressure Vest
- Air purifiers
- Utility reimbursement
- Water purification system
- Walker Accessories
- Air Conditioning Unit
Cool State Programs
- Minnesota: Supports and Service in Minnesota
- Many States: number of caregiver hours and extra services
- Minnesota: Rumi housing and caregiver matching
- New York: $5,000 to assist with moving expenses in certain situations.
- New York: ICSNY member book includes lists of services and benefits
- Washington: New Freedom Waiver
- California: IHSS Protective Supervision
- Minnesota: Disability HUB has lots more resources
- California: Disability Rights California offers help and legal assistance
Here’s an example of someone who is low income and unable to care for herself, but gets her needs met by combining different services: Meet Jane and Sally (Section 8 Rent Example with Live In Aide)
Facebook Groups for People in Medicaid Home Care – Learn from the real experts.
If it is taking a while for your home aides to get approved, and this is causing problems for you, here’s a solution one of our readers found:
Jill’s Story: Jane’s dad cared for her (without getting paid), and Jane also had paid aides through Medicaid. Unfortunately, the agency that handled payroll was taking 2-3 months to approve new aides, causing major problems for Jill.
Jill’s Medicaid caseworker recommended a solution that had worked for some of her other clients. She suggested that Jane’s dad get registered as one of her paid home aides, even though he was not submitting timesheets and not actually getting paid. They decided to do it.
A few months later, one of Jill’s paid aides left the job. By that point, Jane’s dad was already registered, so he easily jumped in and started getting paid for the care he was giving her. This brought more income into the household, and allowed Jane’s dad to immediately hire a new person (who he paid out of his own pocket). Two months later, the new aide got officially approved to be a paid aide, and Jill’s dad stopped taking paid hours.
SPEND DOWNS AND SHARE OF COST
If you have a large share of cost, spend down, or out-of-pocket payment:
For adults: Look into medicaid for working adults with disabilities. In some states there is no minimum hours for work requirement and many people who have small at-home jobs don’t realize that they are eligible for this program (babysitting, petsitting, elder companion, making art or crafts, etc). The monthly fees to get medicaid in this program can be as low as $20 per month.
For children: Look into programs in your state that allow your child to apply and without considering the parent’s income. These may be called “TEFRA” or “Katie Beckett option” or “institutional deeming waiver” or something else.
For everyone: Medicaid rules vary quite a lot by state. Some people move states and find that they suddenly qualify with no share of cost at all.
Helpful Policy: We do not know if this exists in all states. In California, there is a program called Medi-cal for Aged, Blind, Disabled. In this program Medi-cal will not count anything you pay for health insurance premiums as countable income. Many people are advised by Medi-cal to purchase dental and vision supplemental insurance, this brought down their countable income, and suddenly they became eligible to apply for a Medi-cal without having to use a spend down or share-of-cost program. For example: Judy had a $700/month share of cost – she spent $100/month on insurance and her Share of Cost went away completely! Sounds too good to be true, but it really works.
For Everyone: Consider consulting with a Medicaid planner or special needs attorney to see if there are other options to bring your countable income down. For example, in some states you can create a pooled income trust and this will make your spend down disappear.
For children or adults collecting child support: If child support is making you ineligible or giving you a high share of cost, consult with a Medicaid planning attorney. Some parents have been successful in a court ordered modification for payments to be directed into a Special Needs Trust that does not impact Medicaid.
What Do You Think?
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Updated May 2018. If you found this page helpful, please share it with others by pressing one of these magic little buttons: