Extra Benefits for People in Medicaid Waiver Programs

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.

๐ŸŽ€ If you have an unpaid attendant, and you were recently approved for your attendant to get paid, your attendant may be able to submit timesheets 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.

๐ŸŽ€ 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.

๐ŸŽ€ If your caregiver lives with you, they may not have to pay any taxes if they file for aย  difficulty of care income tax exclusion.

๐ŸŽ€ 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. For example: Pest control, transportation to doctors, funds for over-the-counter medications, or home delivered meals.

๐ŸŽ€ย 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: iphone tablets, wheelchair lifts, weighted blankets, specialized disability computer equipment, and even a Vitamix.

๐ŸŽ€ย Some waiver programs offer Home Modifications. Inquire with your caseworker or check the rules for the program you are in to see if home modifications funds are available. This may be available even if you are a renter. Home modifications could include renovations and repairs to improve the safety of your home, or to make your home more disability accessible. For example: Walk-in bathtubs, widening doorways, evening uneven floors, installing grab bars, or adding wheelchair ramps.

๐ŸŽ€ย  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.

๐ŸŽ€ 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:ย How to Decide: Agency Care or Self-Directed Care

๐ŸŽ€ In some states your caregiver may get a higher salary and you may get more caregiver hours if you choose Self-Directed care.

๐ŸŽ€ If your caregiver lives with you, please see this list of Extra Special Benefits if You Have a Live-In Caregiver

๐ŸŽ€ย Some waiver programs have funds available for extra supports, but they do not tell you how you can spend these funds or what can get approved. It may be helpful to see some examples:ย Examples of Supports and Services for Medicaid Waivers in Minnesotaย (Minnesota happens to be extra special. You probably won’t find this level of support in other states).

๐ŸŽ€ย Facebook Groups for People in Medicaid Home Careย – Learn from the real experts.

๐ŸŽ€ California only. You may find this helpful:ย How to Qualify for IHSS Protective Supervision.

๐ŸŽ€ย 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.ย Ask your caseworker, as this varies by state.

๐ŸŽ€ย 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.


๐ŸŽ€ย 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:

Jane’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 Jane.

Jane’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 Jane’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 Jane’s dad stopped taking paid hours.

๐ŸŽ€ If you have a large share of cost, spend down, or out-of-pocket payment for this program:

For adults: Look into medicaid for working adults. In some states you only have to work a few hours to qualify. It may eliminate your out-of-pocket costs.

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: Look into avoiding a share-of-cost or spend down program and applying for a different type of medicaid program. All states have many different programs:ย How to Get Medicaided

Super Good Loophole: Many people are able to purchase dental and vision supplemental insurance, this brought down their countable income, and suddenly they became eligible to apply for a Medicaid without having to use a spend down or share-of-cost program.

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:ย If child support is making you ineligible or giving you a high share of cost, look into getting the child support directed into an ABLE account or Special Needs Trust. This must be done through a court order or a court-approved change to your child support agreement.

Updated Feb 2018. Please comment below with more ideas to add to this page.ย 

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