Maryland Medicaid Waivers Have a Waitlist of 21,000 names — Is That Ever Going to Change?

Q. My sister, Freda, age 70, resides in Rockville, Maryland, and is physically disabled. Due to her disability, has been cared for in her home by nursing aides 24/7 for the past several years. Luckily, our parents had amassed considerable savings before they died, and left money for Freda in a special needs trust which has been paying for these round-the-clock caregivers, but the money in this special needs trust is about to run out. We know that this kind of long-term care is not covered by Medicare or her Medicare supplemental insurance, or her Medicaid health insurance, but we would like to do whatever we can keep her at home, where she is comfortable and her needs are being met.

I’ve read about Medicaid waivers that could help her afford home-based care. I also heard that Maryland has a wait list of over 20,000 names — 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 hear back.

Is anything being done in Maryland for residents with disabilities, such as Freda, who want to remain at home and receive Medicaid long-term care coverage at home? Thanks for your help!

A. Across the country, at least 820,000 people — primarily the disabled and seniors — are on waiting lists for Medicaid waiver programs that could help them afford home care, according to the Kaiser Family Foundation. Eligibility requirements, resources, and wait times for these programs vary from state to state, but most are under-resourced, leaving applicants to wait an average of 39 months.

In a situation similar to your sister’s, Patrick Durbin of North Bethesda is waiting for a waiver to help continue the much-needed in-home care that he had been receiving. Twelve years ago, he suffered a devastating injury resulting in permanent spinal cord damage; since then, he has been a quadriplegic and reliant on a ventilator, requiring a 24 hour nursing team to perform almost every simple task.

Luckily for Patrick, he had very good health insurance which had been covering these needs until recently. But at the end of 2019, when Patrick turned 65, his private insurance said they would no longer cover the long-term care he needed. At 65, he had to sign up for Medicare, and Medicare does not pay for any long-term care. Since then, he’s had to pay $700 a day for his nursing team, depleting his personal funds. The same home health care team has been with him for the twelve years since his accident, and according to Patrick, “they are the reason that I am still here today.” Their care, diligence, and expertise has kept him almost completely out of the hospital since his accident, despite his complex medical condition. Because of them, he is able to lead a productive life which includes mentoring others with severe spinal cord injuries through the Christopher & Dana Reeve Foundation.

Now, according to Patrick, Medicare and Medicaid are forcing him out of his home and into a nursing facility. Patrick exhausted his savings to qualify for Medicaid and he was hoping to qualify for a waiver to help him continue his in -home care. But, he says that a Maryland administrative judge told him “he had to be in an institution to apply for a waiver for Medicaid to pay for the 24-hour in-home care he needs.” So, in other words, he has to be in a nursing home to apply to come home, and he can’t apply from home to stay there.

Is There Legal Recourse for Patrick?

A lawyer for AARP Foundation says forcing Patrick out of his home and into an institution would violate the Americans With Disabilities Act. “The idea of putting somebody into a nursing facility in order to get the care that he needs on its face violates the Supreme Court precedents in Olmstead v. L.C., which is, to me and to other advocates, the Brown versus Board of Education for people with disabilities,” she said.

Patrick is optimistic that he’ll be able to remain at home. Luckily, a new law may be on the horizon to help Patrick and others in his situation.

Maryland is Working to Reduce the Number of Individuals on the Wait List

Currently, the state of Maryland has only 6,348 waivers for home and community-based Medicaid waiver services, which is an abysmal a small number, and worse yet, it only enrolls only about 4,200 residents, according to the state’s health department. The Medicaid long-term care program was originally created in 1965 to cover nursing home care. Since then, it has expanded to allow in-home and community based Medicaid services under so-called “waiver” programs, because they waive the rule that originally required Medicaid to only cover nursing home care.

As mentioned, more than 21,000 residents sit on waiting lists in Maryland, and because of this large number of people on the waiting list, Maryland completely stopped accepting new additions to the waiting list several years ago.

As in the case of Patrick mentioned above, for someone to receive Medicaid-funded in-home Medicaid services, they need to first to be in a nursing home. Then, the Maryland Money Follows the Person program can be used to continue Medicaid at home under the Community Options waiver (more on this waiver below).

According to an October 2021 Washington Post article Andy Owen, a spokesman for the Maryland Department of Health, said that the state hasn’t set a cap on waivers and is going through “as many applications as our resources and those of our local partners and networks will allow.” Elder-care advocates disagree. They say the state has not adequately invested in home-based care even though demand for these services has clearly surged.

Part of the problem is that Maryland has several different Medicaid waiver programs, many of which overlap and many of which have expired, and it is extremely confusing to know which waiver to apply for, and the state doesn’t offer much help in this regard. Plus the state changes the names of its waiver programs, and merges the waiver programs frequently, adding to the confusion. The Maryland Community Options Medicaid Waiver was previously called the Waiver for Older Adults. The Waiver for Older Adults and the Living at Home Medicaid Waiver were merged under this new Community Options Medicaid Waiver title, also known as the CO Waiver.

The CO waiver theoretically allows elderly individuals and those with physical disabilities who need nursing home level care to receive care services in their home instead of being institutionalized in a nursing home. But this is the waiver program that has the absurdly long waiting list that is not accepting any more people to the waiting list. As of January 2020, the Community Options Waiver stopped accepting people to the waiting list and is only available to those who are already in a nursing home and receiving Medicaid services.

What Owen, the Maryland Health department spokesman, was probably talking about, is a relatively new Medicaid waiver program that started in 2015, and theoretically provides services similar to the Community Options waiver, but without a waiting list. Here’s a Fact Sheet about about Maryland’s Community First Choice (CFC) Program.

In fiscal years 2017 and 2018, Maryland spent only about 18% of its Medicaid dollars on older adults and people with physical disabilities on home and community-based care, ranking 33rd in the country. Most of the remaining expenditures went toward institutionalized long-term care. Fortunately for our readers and clients living in the District of Columbia, DC ranks third in the country in spending towards its in-home Medicaid waiver, providing up to 16 hours a day under its EPD home and community based services Medicaid waiver. Our readers and clients living in Virginia are also fortunate to have access to up to 8 hours a day of in-home care through Virginia’s CCC Plus home and community based services Medicaid waiver. Neither the DC waiver nor the Virginia waiver has any waiting list, as there is no limit on the number of individuals that can receive these Medicaid waiver services.

The HCBS Access Act Would Help States Eliminate Long Waiting Lists for Medicaid Waivers for Seniors and Persons with Disabilities

Work is still underway on legislation that was introduced last year that could fundamentally transform the nation’s system of in-home and community-based services (HCBS), potentially eliminating Maryland’s waiting list!

Last spring, Congress introduced the HCBS Access Act (HAA), a bill that adds Home and Community Based Services (HCBS) as a mandatory Medicaid service. The bill was being drafted then and it is still in its initial stages. The HAA would:

  • help states and support state funded services;
  • build on the promises of the Americans with Disabilities Act and the Supreme Court’s Olmstead decision;
  • provide the Federal Medicaid resources necessary for states to fulfill those promises, so that no people with disabilities or older adults are forced to live segregated from their communities;
  • enable people with disabilities to have access to the services they need to live in their communities, without having to wait years and years for these crucial supports;
  • give older adults, often forced into nursing facilities because of a lack of home care, access to the HCBS they need to age in place;
  • make the more than 850,000 people in the country with disabilities and older adults currently on waiting lists eligible for services;
  • support states to build the infrastructure and capacity needed to serve people coming off of waiting lists, better support those already receiving services, and transition people with disabilities and older adults who want to live in the community out of institutional settings;
  • make care more cost effective for the states;
  • would help address the HCBS workforce crisis, the essential and frontline workforce that provides services to people with disabilities and older adults; the HAA would ensure that these workers receive a living wage.

The HAA, if passed into law, would help ensure that people with disabilities can receive care and support in their homes and communities, but I t is still a bill in its initial stages. We will provide updates as they become available.

When Nursing Home Care is the Best Option

As you can see, currently, due to long wait lists and lack of workers, accessing HCBS in Maryland is very difficult for those who really need it. 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 not ideal for everyone. Care in a nursing home is often the only 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 generally 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. To plan for long-term care, please call us to make an appointment for a no-cost initial consultation:

Elder Care Rockville: 301-519-8041
Elder Care Fairfax: 703-691-1888
Elder Care Fredericksburg: 540-479-1435
Elder Care DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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