This occurs often. One of the most common sources for compensation is the care recipient or another family member. That arrangement can also lead to family misunderstandings and conflicts unless there is clarity and agreement.

Lack of a formal agreement can also impact the care recipient’s eligibility for Medicaid. This may be an important consideration in an extended and intensive caregiving situation. Also, refer to the What I can do financially? Section.

A written agreement (shared with other family members) and keeping compensation competitive with local rates for similar service make good sense. Dementia patients and their caregivers encounter the situation frequently and the Alzheimer’s Association offers guidance for personal care agreements.

Medicaid may help if the care recipient is on Medicaid. How that’s done depends on the state. It’s called Self-Directed Service, and Medicaid pays you instead of a Home Health Agency to manage the care. There are guidelines for each of the four models, and states have latitude in how they implement them. The models are:

a) Home and Community-Based Services State Plan Option- 1915(i)

b) Community First Choice-1915(k)

c) Self-Directed Personal Assistance Services State Plan Option-1915(j)

d) Home and Community-Based Services Waiver Programs- 1915(c)

To find services in your state search for “Medicaid self-directed care services” in your state.

If the care recipient is a veteran on disability, they may be eligible for a VA Aid and Attendance benefits and Housebound allowance, designed to pay for help with care. The VA also has a Program of Comprehensive Assistance for Family Caregivers for seriously injured veterans.