How do Medicaid Home Care Programs Support Family Caregivers?

KFF estimates that 4.5 million folks use Medicaid residence care, which supplies medical and supportive providers to assist folks with the actions of each day dwelling (similar to consuming and bathing) and the instrumental actions of each day dwelling (similar to making ready meals and managing drugs). Medicare usually doesn’t cowl residence care (also referred to as home- and community-based providers or HCBS), and Medicaid paid for two-thirds of residence care spending in the USA in 2022. In Medicaid residence care, many individuals “self-direct” their providers, giving them better autonomy over the varieties of providers offered and who they’re offered by; and in some circumstances, permitting funds to household caregivers. Past paying for his or her caregiving, Medicaid helps household caregivers with providers similar to coaching, assist teams, and respite care (which is paid care that enables household caregivers to take a break from their regular duties). Based on a doc made public by Politico, Home Republicans are contemplating lowering Medicaid spending by $2.3 trillion over 10 years, which represents an almost one-third discount in Medicaid spending. Cuts of that magnitude would restrict states’ capability to proceed supporting household caregivers.

This problem transient describes the supply of self-directed providers and helps for household caregivers in Medicaid residence care. (It’s unknown how many individuals are receiving paid care from household and buddies, or what number of household caregivers are receiving helps from Medicaid.) The information come from the twenty second KFF survey of officers administering Medicaid residence care packages in all 50 states and the District of Columbia, which states accomplished between April and October 2024. The survey was despatched to every state official answerable for overseeing residence care advantages (together with residence well being, private care, and waiver providers for particular populations similar to folks with bodily disabilities). All states besides Florida, Indiana, and Utah responded to the 2024 survey, however response charges for sure questions had been decrease. Key findings embody:

All reporting states besides Alaska enable Medicaid enrollees to self-direct their residence care in at the least some circumstances, and amongst these states all enable enrollees to pick out, practice, and dismiss their caregivers.
All responding states (which incorporates the District of Columbia) pay household caregivers below some circumstances and supply household caregivers with different varieties of assist, together with respite care (Determine 1, Appendix Desk 1)
Household helps are most generally out there for caregivers of individuals with mental or developmental disabilities.

Self-directed providers and funds to household caregivers are one of many instruments states are utilizing to deal with shortages of direct care employees, together with those that work in residence and group settings. Shortages and excessive turnover charges among the many direct care workforce replicate demanding work and low wages. The COVID-19 pandemic escalated an current workforce problem for Medicaid residence care, and states used new federal funding and adaptability to take care of service ranges by rising self-directed providers and funds to household caregivers. Though the pandemic-era flexibilities have ended and the additional funding is winding down, states proceed to offer wide-ranging assist to household caregivers via Medicaid residence care packages.

There may be bipartisan assist for household caregivers, however funding for packages that assist household caregivers is in danger below proposals to chop Medicaid spending by a 3rd. Lately, there was bipartisan assist for household caregivers, and Congress enacted 2018 regulation to create a Household Caregiving Advisory Council. The Council’s 2024 report notes that household caregivers are the spine of the nation’s long-term care system, and that with out assist, the well being, well-being, qualify of life, and funds of household caregivers typically endure. In step with bipartisan recognition of the function of household caregivers within the long-term care system, President-elect Trump proposed new helps for household caregivers previous to the election. Nevertheless, these helps are in danger below Republican proposals to scale back Medicaid spending by $2.3 trillion over 10 years. Over half of Medicaid spending is for the varieties of Medicaid enrollees almost definitely to make use of residence care and associated providers, and main cuts to Medicaid can have implications for his or her care. States could also be compelled to scale back spending on Medicaid by eliminating protection for some folks; protecting fewer providers, and (or) reducing cost charges to suppliers and helps for household caregivers.

Which states enable Medicaid enrollees to self-direct their residence care and for what providers?

Practically all states enable Medicaid enrollees to self-direct their residence care in some circumstances (Determine 2, Appendix Desk 2). Self-direction got here out of the “consumer-directed” motion for private care providers that began with demonstration packages in 19 states funded via grants from the Robert Wooden Johnson Basis. Immediately, states might give folks the choice to self-direct residence care via all kinds of non-obligatory residence care packages. States most ceaselessly enable self-direction in waivers that serve folks with mental or developmental disabilities, adopted by people who find themselves ages 65 and older or have bodily disabilities. Among the many 48 states responding to KFF’s survey, Alaska is the one reporting state that doesn’t allow self-direction below any of the house care packages.

Amongst states that authorize self-direction, all states enable enrollees to pick out, dismiss, and practice employees (Determine 3). The power to pick out, practice, and dismiss employees is known as “employer authority” as a result of it permits Medicaid enrollees (with the assistance of their designated representatives when acceptable) to determine who will likely be caring for them. All states with self-directed providers packages present employer authority to enrollees. Most states additionally enable enrollees to determine cost charges for his or her caregivers (38) and to find out how a lot Medicaid funding is spent among the many numerous licensed providers (36).

Which states pay household caregivers and thru which residence care packages?

All responding states pay household caregivers via a number of Medicaid residence care packages (Determine 1, Appendix Desk 1). Funds for household caregivers are usually allowed for the supply of private care, which can be supplied via a number of several types of Medicaid HCBS packages. Private care could also be offered via waivers similar to 1115 or 1915(c) packages, via the Medicaid state plan, or a mix of each. Waiver providers are inclined to embody a wider vary of advantages than the state plan profit, however waivers are often restricted to particular teams of Medicaid enrollees primarily based on geographic area, revenue, or sort of incapacity; and are sometimes solely out there to a restricted variety of folks, leading to ready lists.

All responding states enable funds to household and buddies via a number of waiver packages, however fewer states enable funds to legally accountable family. Forty states enable funds to legally accountable family via waiver packages, and solely six states enable funds to legally accountable family via the state plan. Funds to different household and buddies are additionally much less widespread via the state plan—allowed by solely 22 states. The much less widespread funds to household caregivers via the state plan is as a result of not all states present private care via the state plan, and since the authorized necessities governing state plan providers differ from these governing waiver providers.

Funds for household caregivers are commonest below waivers for folks with mental or developmental disabilities (Determine 4, Appendix Desk 3). Among the many 45 states that responded to the survey and have waivers for folks with mental or developmental disabilities, 44 enable funds to household caregivers. There are fewer states with different varieties of waivers, and the proportion of these states that enable funds to household caregivers can also be decrease – 39 states for waivers serving adults who’re ages 65 and older or have bodily disabilities, 17 states for folks with traumatic mind or spinal twine accidents, and fewer states for different varieties of waivers.

Typically, household caregivers obtain hourly wages like these of different staff, however 10 states have adopted packages often known as structured household caregiving, through which members of the family are paid a per diem charge (Appendix Desk 4). Structured household caregiving is a Medicaid profit that helps unpaid caregivers of people that use Medicaid residence care via waiver packages. Within the structured program, Medicaid pays supplier businesses a each day stipend for individuals. The company is answerable for directing a care coordinator or social employee and a nurse to supervise the household caregiver, reply health-related questions, and supply emotional assist; conducting residence visits about as soon as per 30 days; and passing a set proportion of the stipend (often 50% – 65%) on to the household caregiver. Among the many handful of cost charges reported in an summary of this system by the American Council on Getting older, funds to members of the family are round $40 or $50 per day. States reported structured household caregiving packages within the following waivers:

Seniors and folks with disabilities in 7 states (Connecticut, Georgia, Indiana, Louisiana, North Carolina, North Dakota, and South Dakota),
Folks with mental and developmental disabilities in 3 states (Indiana, Maryland, and New Mexico),
Medically fragile youngsters in North Carolina, and
Folks with Alzheimer’s and associated issues in Missouri.

What different varieties of assist does Medicaid residence care present for household caregivers?

All responding states present assist for household caregivers—who could also be paid or unpaid—and most provide multiple sort of assist (Determine 5, Appendix Desk 5). Probably the most generally lined profit was respite care (supplied by 47 states—all responding states aside from Oregon), which supplies short-term aid for caregivers, permitting them to relaxation, journey, attend appointments, or spend time with different household and buddies. Different generally lined advantages embody caregiver coaching (33 states), and counseling or assist teams (23 states).

Respite care could also be offered anyplace from a number of hours to a number of weeks at a time. Medicare solely covers respite take care of people who find themselves receiving hospice care, which is just out there for people who find themselves terminally in poor health and electing to obtain consolation care as a substitute of healing care for his or her sickness. That makes Medicaid’s respite care the first supply of protection for caregivers of individuals with Medicare and Medicaid. Respite care is obtainable most ceaselessly below waivers for folks with mental or developmental disabilities (42 states) and seniors and folks with disabilities (38 states).

Day by day respite care is obtainable by probably the most states (40), adopted by institutional respite care (supplied by 35), however several types of waivers are inclined to rely extra closely on several types of respite care (Determine 6, Appendix Desk 6). Day by day respite care is on the market below waivers for folks with mental and developmental disabilities in 31 states however solely out there in 26 states inside waivers for people who find themselves ages 65 and older or have bodily disabilities. Alternatively, 26 states present institutional respite care inside waivers for people who find themselves ages 65 and older or have bodily disabilities however solely 19 states achieve this inside waivers for folks with mental and developmental disabilities. Weekly respite care is the least ceaselessly supplied, and over half of states (30) report providing different varieties similar to hourly, month-to-month, or annual. Some states reported protecting respite care via grownup day facilities or in a single day camps.