How to Get Extra Help if You Are in a Medicaid Waiver Program

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.

πŸŽ€ 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.

πŸŽ€ 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.

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

πŸŽ€ 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.

πŸŽ€Β 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 can 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 people who have purchased: iphone tablets, wheelchair lifts, weighted blankets, specialized disability computer equipment, and even a Vitamix.

πŸŽ€Β 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.

πŸŽ€Β  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.

πŸŽ€ 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:Β How to Decide: Agency Care or Self-Directed Care

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

πŸŽ€ If your caregiver lives with you, please see this list of How to Get Extra Help if You Have a Live-In Caregiver

πŸŽ€ California only. You may find this helpful:Β How to Qualify for IHSS Protective Supervision

πŸŽ€ 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:Β 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:Β 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.


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