The Medicaid cash and counseling program, which allows persons to self-direct their care, started in 1996 as a trial program in Arkansas, Florida, and New Jersey, and provided an alternative to the traditional approach of receiving agency-based provider assistance. Based on the success of this consumer-directed pilot program, Medicaid cash and counseling programs have since expanded to all 50 states, as well as the District of Columbia. Over time, the term, “cash and counseling”, has become a bit dated, and is now called by a number of varying names. These include consumer-directed services, self-directed care, participant-directed services, and by state specific Medicaid program names, such as California In-Home Supportive Services, the New Jersey Personal Preference Program, and the South Carolina Community Choices Medicaid Waiver.
The ability of Medicaid recipients, including those with Alzheimer’s disease and other dementias, to self-direct their own care allows a much larger degree of freedom in controlling which long-term care services and supports they receive. Particularly popular is the option to hire the caregiver of the program participant’s choosing, which in many states includes the ability to hire family members, often an adult child, and in some cases, even a spouse. In the case of persons with dementia, many times a relative is already providing informal care, or said another way, they are providing care without being paid. In fact, according to the Alzheimer’s Association, more than 18.5 billion hours of unpaid care was provided by more than 16 million relatives and friends for persons with dementias in 2018. Medicaid cash and counseling programs provide a way for these informal caregivers to be compensated for providing care.
In the event that a Medicaid recipient is unable to self-direct his or her own care, for instance, due to cognitive decline, a representative can be named to make decisions in place of the individual. Often the representative is a family member or close family friend. However, the representative cannot also be the “hired” caregiver.
There are eligibility requirements for both Medicaid care recipients and the caregivers selected by them (or their representatives).
In order to participate in a consumer-directed Medicaid program, persons with dementia must meet financial and functional eligibility requirements. Depending on the state, the cash and counseling program may be an option through the regular state Medicaid plan or be part of a Medicaid waiver. The income limit for the state Medicaid program is often more restrictive than is the income limit for a Medicaid waiver. As of 2020, for a single applicant, the monthly income limit for state plan Medicaid is generally limited to 100% of the SSI Federal Benefit Rate ($783) or 100% of the Federal Poverty Level ($1,063). For a HCBS Medicaid waiver, income is usually limited to $2,349 / month. Assets, for both programs, are frequently restricted to $2,000. In addition to the financial requirements, it is common that an applicant must require a nursing home level of care in order to be eligible. While this terminology is interpreted differently based on the state and the Medicaid program, nursing home level of care is frequently determined based on the need for assistance with completing activities of daily living. Examples include requiring help with bathing, personal hygiene, dressing and undressing, using the bathroom and cleaning up after oneself, mobility, transitioning from the bed to a chair, and eating. Even those programs that don’t require a nursing home level of care still often require a Medicaid applicant to need assistance with a specific number of daily living activities.
For state specific Medicaid eligibility requirements, click here. For persons over the income and / or asset limit(s), this is not automatic cause for disqualification. Professional Medicaid planners can assist in restructuring finances for qualification purposes. Find a professional planner here.
While care recipients are able to hire the caregivers of their choosing, some states and programs limit the relation of persons who can be hired. For instance, adult children, grandchildren, in-laws, close family friends, and ex-spouses are frequently able to be hired as caregivers, but many states do not allow spouses to be hired. In addition, there may be other caregiver requirements, which may include having a high school diploma, becoming a state-licensed care provider, having a background check completed, being CPR and first aid certified, and taking caregiver training courses. Remember, a caregiver cannot also serve as a “decision maker” (representative) for a dementia care recipient who is unable to self-direct his or her own care.
While all cash and counseling programs are not identical in nature, the dementia person essentially becomes the “employer”, although a designated representative may offer assistance. Generally speaking, the process works as follows:
The person with dementia meets Medicaid’s self-directed program eligibility requirements and undergoes a very thorough assessment of his or her needs. This assessment includes input from his or her physician and informal caregiver (if applicable). With this information, the type of care needed is determined, and a service plan, also called a personalized care plan, is created. Based on one’s care plan, persons are able to purchase approved services and supports. Most commonly, program participants are approved to hire a caregiver, and the plan indicates the number of care hours required for a specific time period. For example, the care plan may indicate that 12 hours of assistance is required per week. (Caregivers may provide a variety of assistance, including personal care, light housecleaning, laundry, preparing meals, shopping for essentials, and transportation.)
An individualized budget is determined based on the type of care, the amount of care that is needed, and the average cost in the area. While it is not possible to give a standard estimated hourly pay rate that a caregiver should expect, the rate of caregiver payment is generally several dollars less per hour than the going rate for home care workers in one’s geographic region.
Self-directed programs may require that the person with dementia work with a financial management service company for assistance with calculating payroll tax, logging caregiver hours, and processing payments. When this is the case, a percentage of the caregiver’s payment is taken as a fee for services.
Cash and counseling programs give persons with dementia a greater degree of freedom and independence in deciding what services and supports they receive. Persons who have Alzheimer’s disease can be resistant to change and the ability to make decisions, such as hiring, training, managing, and even firing, their own caregivers allow them to maintain a greater degree of control.
In addition, informal caregivers already providing care might be able to be paid via a cash and counseling program. This type of program also presents the opportunity for dementia patients to hire a caregiver with which they already have a bond when the need for care arises. This ability to choose their own caregiver is huge, as recent data from the Alzheimer’s Association indicates that almost 80% of elderly persons with dementia receive assistance with at least one activity of daily living, such as taking a bath, getting dressed, or eating.
All in all, cash and counseling programs helps those with dementia remain living in their homes or the homes of loved ones when otherwise they might require nursing home care.
Participant-directed Medicaid programs are commonly available through Medicaid waivers, but they are also available through regular state Medicaid plans. Some states offer multiple participant-directed programs. For instance, a state might offer self-direction through both their state program and via a waiver, or offer participant-direction through several waiver programs.
Traditionally, state Medicaid would pay for institutionalization Medicaid (nursing home care), but not long-term care in the community. However, overtime this has started to change, and more states are offering long-term care, such as personal care assistance, through their state plans with the option of participant-direction. Formally, consumer directed care via the state plan might be referred to as the Home and Community Based Services (HCBS) state plan option. A handful of states are also offering consumer directed attendant care (personal care assistance) via the Community First Choice (CFC) state plan option. State plan programs are entitlement programs, which means that if a person with dementia meets the eligibility requirements, he or she will receive benefits.
Long-term consumer directed care is frequently offered via Medicaid waivers. Generally speaking, this option is available through HCBS Medicaid waivers, also frequently referred to as 1915(c) waivers. Via these waivers, a variety of home and community based supports are generally available and often include personal care assistance, adult day care, homemaker services, personal emergency response systems, respite care, and home modifications for accessibility purposes. Unlike state plan options, Medicaid waivers are not entitlement programs, and meeting the eligibility requirements does not ensure applicants will receive benefits. Stated differently, Medicaid waivers set participant enrollment caps, and once all the participant slots have been filled, waitlists form.
As a side note, in addition to Medicaid cash and counseling options, there are Veterans programs, such as Veterans Directed HCBS & Aid & Attendance Pension, and non-Medicaid state programs that offer consumer directed care.
To find out if there is a consumer directed program in the state in which you or a loved one resides, families should contact their local Medicaid agency. Find your state’s administering agency here.
For persons who are already eligible and receiving Medicaid benefits, the application process is straight-forward. One should speak with their local Medicaid agency about applying and enquire if the program has a waitlist.
For those persons who are not receiving Medicaid benefits or are unsure if they are eligible, a non-binding Medicaid eligibility pre-screen is available here. Applicants will first need to apply for Medicaid, then apply for the specific Medicaid program that allows for consumer directed care. Please note, the application process can be time consuming and may take several months before an application is approved. Also, as mentioned previously, Medicaid waivers may have a waitlist.