Q. For years, my Aunt Linda, 80, who lives in Rockville, Maryland, has had trouble walking or standing for long periods and trouble getting in and out of her favorite chair. She also needs help dressing and bathing, and she has frequent incontinence. As her dementia gets worse, she has started to need more assistance with lots of other things.
It’s my understanding that Linda’s low income should qualify her for Maryland Medicaid in home care through Maryland‘s Home and Community-Based Services waiver program, but she has been on the waiting list for over five years! Is this happening to a lot of people, and if so, what is being done about the issue? Thanks for your help!
A. A recent Washington Post article discusses someone in a similar tragic situation to your Aunt Linda. In the article, Tiffanie Rivers has been trying to get her mother, Gayle Love, a Medicaid waiver for Home and Community-Based Services (home-based care), but Love is stuck on Maryland‘s ridiculously long waiting list. Despite recent government funding to address such issues, Rivers was told that the waiver that she was applying for in Maryland has a wait list of almost 21,000 names, which is one of the longest in the country, and that the vast majority of families see their loved ones check into nursing homes or die before they ever get off the waiting list.
What is someone in that situation to do? I’ll do my best to explain, but first let’s discuss what is involved with Medicaid Home and Community-Based Services.
What are Medicaid Home and Community-Based Services (HCBS)?
HCBS are designed to help seniors and people with disabilities and chronic illnesses live independently in their homes by providing in-home assistance with activities of daily living, such as bathing, dressing, and toileting.
- HCBS benefits vary widely by state but typically include home health aide services, assistance with daily living tasks, and assistive technology;
- People who use HCBS include seniors with physical and/or cognitive limitations, people with intellectual disabilities such as Down’s syndrome or autism, people with physical disabilities such as spinal cord injuries or cerebral palsy, people with serious mental illness, and people with disabling chronic conditions.
- While waiting lists allow states to manage costs, they also restrict access to HCBS for many individuals who need them. Long wait times result in many people having to find other ways of meeting their needs for assistance with daily needs.
Home and Community-Based Services in Maryland, DC, and Virginia
These are some things you should know about home and community-based Medicaid services in Maryland, Virginia, and DC:
- More than 75% of states have an HCBS waiver waiting list for Medicaid for home and community-based services, according to a report by the Kaiser Family Foundation.
- As mentioned above, Maryland has a wait list of almost 21,000 names, with typical wait times of 5 to 10 years, making it virtually impossible for people to take a vantage of this benefit if they are living in the community and trying to get in-home Medicaid. In fiscal years 2017 and 2018, Maryland spent only about 18 percent of its Medicaid dollars on home and community-based care for older adults and people with physical disabilities, ranking 33rd in the country.
- Importantly for our clients in the DMV, both the District of Columbia and Virginia do vastly better in this regard.
- DC has an excellent HCBS waiver program, called the EPD Waiver, which has no waiting list and provides up to 16 hours a day of in-home care for qualifying individuals.
- Virginia also has an excellent HCBS waiver program, called the CCC Plus Waiver, which has no waiting list and provides up to 8 hours a day of in-home care for qualifying individuals.
The Unmet Need for HCBS in Maryland
The unmet need for HCBS for seniors and people with disabilities in Maryland is overwhelming. These services are unaffordable for most people without the help of Medicaid, unavailable through private insurance and Medicare, and inaccessible for most Maryland residence due to the long waiting lists described above. Some of our Maryland clients are fortunate enough to have family members who live in Virginia or DC, and we are able to help our clients relocate to Virginia or DC and get them on home-based Medicaid, where the HCBS waiver programs are robust with no waiting lists. Some of our Maryland clients will even move into a rental apartment in DC in order to take advantage of DC‘s excellent EPD waiver program. But most of our Maryland clients want to stay in their own homes and receive in-home Medicaid services; sadly, this goal is for the most part unattainable in Maryland.
Shortcut for Getting HCBS in Maryland
The only real way to get HCBS Medicaid services at home in Maryland is to first be in a nursing home for long enough to get Medicaid in the nursing home, which could take several months up to several years, depending on your level of assets that need to be protected. Please note that for a married couple, we can always protect 100% of your assets for the healthy spouse, and for a single person, we can always protect 40% to 70% of your assets and get you on Medicaid. Click here for more information .
State Funding Has Increased, But the Demand for Home Care far Outweighs Supply
In the past decade, states such as Maryland have increased funding to their Medicaid HCBS Waiver programs. But the demand for home care far outweighs supply.
- The growing elderly population in the coming years will further intensify the need for these services;
- In Maryland, which has wait lists that rival far more populous states like Florida, the situation has long been overwhelming;
- Low pay and lack of benefits has affected the hiring of workers, so there aren’t nearly enough. In addition, home care providers struggle to recruit and retain workers who don’t want the stress of caring for people with physical and cognitive disabilities;
US Government Steps in to Help with American Rescue Plan
President Joe Biden allotted $400 billion in his infrastructure plan this spring to expand HCBS to help people remain in their homes and out of nursing homes.
The American Rescue Plan, approved by Congress in March, provides a 10% increase in federal Medicaid funding to states, or nearly $13 billion, for HCBS. The money, which must be spent by March 2024, can be used to provide personal protective equipment to home care workers, train workers, or help states reduce waiting lists for people to receive services.
But according to many industry insiders, the money will not necessarily make the waitlists disappear because it will not solve the problem of having too few workers.
When Nursing Home Care is the Best Option
Unfortunately, due to lack of workers and long wait lists, accessing HCBS has proven to be very difficult for many who really need it, especially in Maryland. Some families empty their savings to pay for a professional caregiver or have a relative cut down on work to provide care themselves, but this is obviously not ideal for everyone. Skilled care in a nursing home is often the best option to ensure that your loved one receives the care that he or she needs in a timely manner.
When your loved one needs long-term care, Medicaid is the single largest payor of nursing home care costs because so many people can’t afford to cover the costs themselves. However, Medicaid eligibility is the most complex area of law in existence, and has complex income and asset and functional capacity requirements, making it extremely difficult to qualify, so the help of an experienced elder law attorney, such as those of us here at the Farr Law Firm, is absolutely essential.
Planning for Long-term Care
When it comes to planning for long-term care, Medicaid Asset Protection Planning can be started while your loved one is still able to make legal and financial decisions, or can be initiated by an adult child acting as agent under a properly-drafted Power of Attorney, even if your loved one is already in a nursing home or receiving some other type of long-term care. In fact, the majority of our Lifecare Planning and Medicaid Asset Protection Planning clients come to us when nursing home care is already in place or is imminent.
Generally, the earlier someone plans for long-term care needs, the better. But, fortunately, it is never too late to begin your planning. To afford the catastrophic costs of long-term care without depleting all of your loved one’s hard-earned assets, your aunt should begin her Long-Term Care Planning as soon as possible. You should also do Incapacity Planning and Estate Planning, if you haven’t done so already. Please call us to make an appointment for an initial consultation:
About Evan H Farr, CELA, CAP
