Medicaid Waivers: The Best Kept Secret in Dialysis Home Health Care

A few years ago, I found myself caring for my 90 year old mother with dementia. We first tried to keep her in her home, then we moved her to an assisted living center, and finally even adding health care aides to her care there was not enough. We had reached a crossroads. I either had to move mom to a nursing home or move her in with us for 24/7 supervision. As a family, my grown daughter, grandchildren, and I all decided that we would assume responsibility for her care.

Why am I writing about care for someone with dementia on a dialysis-related blog? Well, hear me out. It soon became apparent that my mom was going to need help on a daily basis, or we were all going to drown from the responsibility. Beginning to sound familiar?

I began looking for resources to help us care for her at home. The first stop was our state’s Department of Health and Human Resources. They gladly accepted her application for Medicaid—but she did not qualify. They referred me to the Department of Aging (DAR’s) Senior Center in our region. That resulted in a painfully frustrating game of phone tag; each office referring me back to the other. After lengthy conversations somewhat akin to pulling teeth, someone finally mentioned a Medicaid Waiver program. “What’s that?“ I asked.

In 1973, an amendment to the federal Older Americans Act (OAA) required states to separate their aging planning and service areas and designate Area Agencies on Aging (AAAs) to implement local programs and services for older Americans. Supposedly, the quickest way to find out what services a senior may qualify for and what programs are available is to contact the Area Agency on Aging office serving the county where the senior lives. But, that may not always be the case. Sometimes you have to keep digging, like peeling the layers off an onion—tears and all!

Generally, states offer waivers to elderly people (aged 65 or over), physically disabled people, adults and children with developmental disabilities, and medically fragile people who require life support or other extensive medical equipment. While CKD and ESRD are not on the radar, that does not mean you or a loved one cannot qualify.

I had started dialysis within months of assuming responsibility for mom’s care, so it was like a double whammy. When I applied for a waiver for my mom, I explained to the worker that I was new to home dialysis, and did not have the strength to physically care for my mom. The worker suggested I apply for myself as well, which I did. I was more than surprised I was approved for 10 hours per week. The only stipulation was that a patient care aide could NOT perform any dialysis treatments. But assistance with cleaning, laundry, even doctor’s appointments was most welcome! After I the first year of home dialysis, my health improved dramatically, and I was able to resign from the program. But, as my mom’s condition deteriorated, they were able to add more hours to her care.

DHHR and the Area Agency Aging both administer waiver programs that help people with disabilities and seniors, to ensure that these vulnerable populations can live independently in their homes and communities, and/or age in place. Thanks to these waivers, states can provide services to their residents that wouldn’t usually be covered by Medicaid, for instance, in-home care for people who would otherwise have to go into long-term institutional care.

If you are eligible for both Medicare and Medicaid, you can have and use both for the services you need. However, the services they cover are not always the same. For example, Medicaid offers coverage for things like personal care services while Medicare does not.

What Are the Types of Medicaid Waiver?

There are several types of Medicaid waivers. All waivers, no matter what type or state, are under the authority of the Social Security Act. The following three waivers may or may not be available in your state, but if you are having trouble with performing daily activities, especially if you are on home dialysis, you might want to see if one or all of these programs is offered in your state, and if you qualify:

• Section 1915(c) waivers – Home and Community-Based Services (HCBS) waivers are designed to allow states to provide home and community-based services to people in need of long-term care. This means they can stay in their own home or a community setting (such as a relative’s home or a supported living community) instead of going into a nursing facility.
• Section 1915(b) waivers – “Freedom of choice waivers” allow states to provide care via managed care delivery systems. These organizations contract with state Medicaid agencies, and are paid from the state Medicaid fund for providing health care services to the beneficiaries, thus limiting the individual’s ability to choose their own providers.
• Combined Section 1915(b) and 1915(c) waivers – These waivers allow states to provide home and community-based services by contracting with the managed care organizations that are defined in Section 1915(b). The contracted managed care organizations deliver the home and community-based health care services to qualifying individuals.

Services may vary on a case by case basis and will be affected by the state in which the beneficiary resides. They may include:

• Personal care services and supervision, at home or in an assisted living facility
• A home health aide
• Nursing
• Medical supplies and equipment
• Chore and homemaking services, such as shopping, laundry, and cleaning
• Hot meal delivery services
• Respite care to relieve a primary caregiver
• Counseling services
• Home and/or vehicle modifications, such as ramps and safety rails, to increase independence
• Support and case management
• Assistance transitioning from a nursing home into the community
• Access to senior centers or adult group day care
• Transport to and from non-emergency medical appointments
• Non-medical transportation services
• Personal emergency response systems

Waiting Lists

Medicaid waivers are not an “entitlement.” Whereas someone in need of nursing home care would be automatically entitled to a place in a facility, the Home and Community-Based Services waiver program is deemed a privilege rather than a right. As such, people may spend several years on a waiting list before they receive care. And your estate may be forced to pay back some of the expenses you incur. It’s important to note that when you apply for Medicaid, any gifts or transfers of assets made within 5 years of the date of application are subject to penalties. And if you have cash assets, such as a home or life insurance, the state may place a lien on those assets after you pass, to attempt to recover some of their cost. However, at no point during the waiver program do they enjoin, attach, or garnish any of your disability, social security, or other sources of income. Your income is only used to determine whether you qualify. Another advantage of most Medicaid waiver programs is that the qualifying income is higher than for traditional Medicaid.

On a personal note, a very astute elder attorney advised me of ways to protect the family home. You may want to check with a disability or elder attorney for specialized advice for your state.

How to Qualify for a Medicaid Waiver

You will need to meet medical and income criteria that would require you to be in a nursing home or other institution (think dialysis clinic!) if you did not receive in-home or community care. Congress created these waivers specifically to help keep people in their own homes and communities instead of receiving institutional care, so benefits are only awarded to people who are at risk of institutionalization. The rules about the institutional level of care vary from state to state, but most states require a diagnosis and a professional assessment of the applicant’s ability to safely complete activities of daily living (ADLs). Most of us take for granted these activities as we struggle to get through a day on dialysis. Click the link, review the checklist carefully and honestly, and think about how many of these activities you need help with.

Most of us on dialysis never think of needing to go to a nursing home for care. We struggle along, with help from family, care partners, friends, etc…but perhaps it would help to re-evaluate. When I completed my interview with the social worker/nurse to determine my eligibility, I was shocked at how many of ADLs I was restricted in completing. Remember, this was when I had just started dialysis, and was most vulnerable. However, I can also see a day down the road, when, if I want to continue with home dialysis, and age in place, I am going to need help again. I might be able to do the treatment myself, but I can barely lift those boxes and bags now, much less when I get really old and frail!

I read comments on Facebook all the time from people on dialysis who are struggling to keep up with their daily activities, the needs of someone with a chronic illness, housework, even a job to support a disabled partner. What would you give for an hour of help a day? A few hours a week? It may not be as far-fetched as you think! Those of us with CKD and ESRD, and our carers, are no different than those with other chronic disabilities that do receive assistance: it’s time to start thinking outside the box. It’s all in how you ask for that help. Local agencies are not going to tell you about these programs, but now you know what to ask for. So if you are struggling on dialysis, consider applying for a Medicaid waiver in your state, even just to get on the waiting list and prepare for the future.

Visit the Centers for Medicare & Medicaid Services to find your state’s contact information. Also check out the following resources:

• http://www.caregiverlist.com/StateInformation.aspx
• https://assistedlivingtoday.com/blog/what-is-a-medicaid-waiver/