You asked which states pay family members to provide long-term care to their elderly or disabled relatives, how (through what mechanism) they are paid, and what training the family members acting as caregivers receive.
We found no central source that could provide us with this specific information for every state; therefore we contacted all 50 states and 48 responded. Of the 48 states that responded, 42 allow payment for some family members under limited circumstances in one or more of their programs. These are Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Florida, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Nevada, New Hampshire, New Jersey, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, South Carolina, South Dakota, Tennessee, Texas, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, and Wyoming.
The remaining six responding states (Alabama, Delaware, Georgia, Louisiana, Pennsylvania, and Rhode Island) do not allow payments to family members. Two states (Montana and New Mexico) did not respond.
Most states that provide caregivers through their regular home care programs do so through home care agencies and do not allow family members to serve as paid caregivers, except in unusual, very limited circumstances. Some allow family members, but not spouses or parents of minor children, but they must be employed, trained, and paid by the agency.
States that allow relatives to be caregivers often do so through a “consumer-directed option,” either as part of the home care program or as a separate program, whereby consumers can choose and hire their own personal care attendant or assistant (PCA). PCAs may be certain relatives, but not usually the spouse, parent of a minor child or legally liable relative (except in 12 purely state-funded programs that do not have any limits on who can be a PCA and do not use Medicaid money).
Connecticut allows consumer-directed PCA services under a Medicaid waiver for disabled adults under age 65 and a new state-funded pilot for the elderly. These programs prohibit payments to spouses, conservators, and the conservators' relatives, but allow payments to the patient's other relatives (unless they are already providing services at no charge).
PCAs provide non-medical care, such as help with bathing, dressing, eating, walking, using the toilet, or transferring from a bed to a chair. Programs that provide or allow for PCAs most often serve younger disabled residents, but sometimes also the elderly. They give the clients more control by allowing them to hire, train, and supervise their own PCAs. The client is considered the employer. The state either pays the PCA upon submission of a timesheet, hires a financial intermediary to do it, or gives the money to the client, who then pays the PCA.
Most states do not require any particular training for a family member who acts as a PCA in the consumer-directed option but leave it up to the clients to do any necessary training. We found only six states (Arizona, New York, Washington, South Carolina, Texas, and Utah) that require minimum PCA training of some type.
PAYMENTS TO FAMILY MEMBERS
Models for Providing Service at Home
States can generally provide PCA services through one of two models:
1. Home care agencies where clients generally cannot choose who provides their care. But some states allow the home care agencies to hire the patient's relatives or friends to provide the care under limited circumstances, such as when the family lives in a rural area and adequate care is not otherwise available, or when there are special medical conditions or hardships. Those that do, pay them through the agency, which is their employer, and require them to have the same training as a regular home health aide or personal care assistant hired through an agency.
2. Personal care attendant options where the PCA can be hired through a PCA agency or directly by the client who acts as the employer (the “consumer-directed option”). States most often allow this consumer-directed option under a Medicaid waiver or a state-funded program for limited numbers of people under special circumstances, for instance when the person lives in a rural area or cannot otherwise find appropriate help through an agency.
If the programs use federal Medicaid or Medicaid waiver money, payments can generally go only to family members and other relatives who are not legally responsible for the client's support. Federal rules prohibit spouses, parents of minor children, and other legally responsible relatives from receiving such payments, but otherwise it is up to each state to decide which relatives it will pay and under what conditions (42 C.F.R. § 440.167). Medicaid provides health care to very poor elderly and disabled people and families with children.
States may offer Medicaid-funded PCA services by amending their regular Medicaid state plan to include them or asking the federal Center for Medicare and Medicaid Services (CMS) to waive some of the usual Medicaid rules and allow somewhat higher income limits or limit numbers of participants. Some states have several different waivers for different groups, such as the elderly, physically disabled, and mentally retarded. The bulk of these waivers are 1915 “home and community-based” waivers. Some are 1115 “research and demonstration” waivers, which give states more flexibility in developing their programs.
Three states (Arkansas, Florida, and New Jersey) have made use of 1115 research and demonstration waivers to start “cash and counseling” programs. These are basically consumer directed programs that give consumers a set amount of money for PCA and other services such as home or vehicle modifications and equipment that promote independent living. Programs in all three states allow family members to be paid as PCAs, but only New Jersey allows spouses.
Twenty-one states responded that they also have solely state-funded programs that allow payments to some family members. Twelve states (Colorado, Kentucky, Maine, Minnesota, New Hampshire, New Jersey, North Dakota, Oregon, Texas, Utah, Vermont, and Wisconsin) allow these state-funded programs to pay any relatives, including spouses, parents of minor children, and other legally responsible relatives. Seven (Connecticut, Illinois, Indiana, Kansas, Massachusetts, Nebraska, and Nevada) prohibit payments to spouses, parents of minor children and people who are legally liable. Maryland's state-funded program prohibits payments to spouses, children, stepchildren, parents, grandparents, siblings, or in-laws, but allows payment to other relatives. South Carolina prohibits immediate family members but allows aunts, uncles, and cousins.
Connecticut's new state-funded pilot for the elderly, like its Medicaid waiver for disabled adults under age 65, prohibits such payments to spouses, conservators, and the conservators' relatives, but not to other relatives (Conn. Agencies Reg. § 17b-262-588 (17)). But the state will apparently not pay relatives who have been previously providing services at no charge.
The payment method varies among states and sometimes among programs within a state.
When the family member caregiver is employed by an agency, the agency pays the caregiver. Sometimes the state issues the check directly to the consumer who has chosen the consumer-directed option and the consumer, who is considered the employer, pays the employee. Twenty-
eight states require or allow a financial intermediary to issue the check directly to the employee and to handle deductions and payment of taxes on the clients' behalf. (Connecticut also uses an intermediary acting for the consumer). Some states use different methods for different programs or let the clients choose which method they prefer.
For states that allow family members to be employed through home care agencies, the family members must usually meet the same training requirements as other agency employees.
Federal law does not require training for PCAs or family members acting as PCAs in the consumer-directed portions of these programs. In most states, the consumer is responsible for whatever training he considers necessary, as is also the case in Connecticut.
We found only six states (Arizona, New York, Washington, South Carolina, Texas, and Utah) that require some type of minimum training for consumer-directed PCAs, including family members. In Arizona, the PCAs receive two weeks of training, including CPR training, sponsored by the state's Medicaid managed care health plans, which also act as fiscal intermediaries. Texas requires only a couple of hours of orientation. In New York, people who perform household tasks are excluded from training.
In Washington, PCAs must receive 22 hours of basic training, called Fundamentals of Caregiving, and 10 hours of continuing education every year. The training is provided through a contract with area agencies on aging. The client provides any additional specific training. The state has produced an orientation workbook and video, as required by recent legislation (WAC 388-110).
In South Carolina, prospective PCAs under the state-funded Head and Spinal Cord Division of the Department of Disabilities and Special Needs can be trained by an established, acceptable PCA training program such as that offered by the USC School of Medicine's University Affiliated Program. If that is not possible, the potential attendant is screened by an organization concerned with care quality issues, such as an independent living center or the South Carolina Spinal Cord Injury Association.
Utah requires relatives and other PCAs to take first aid training.
Most states do not require specific training for PCAs, but instead require the client who chooses the consumer-directed PCA option or his representative to undergo training on how to be the employer, how to train the PCA employee, and how to handle the paperwork. Some states, as an alternative to training, require the client to pass a competency test designed to test his knowledge in these areas.
Table 1 below shows the results of our updated informal e-mail and telephone survey. We asked (1) if the states had any programs that allowed family members to be paid to care for their elderly or disabled relatives at home, (2) if certain family members, such as spouses and parents of minor children, were excluded, (3) how the program pays the family members (the payment mechanism), and (4) if training is required for family members. Because the Medicaid and Medicaid waiver programs sometimes have different rules than state-funded programs, we have separated these out in the table for states that also had state-funded programs. We use the term Medicaid in the table to mean either regular Medicaid, Medicaid waiver programs, or both, although most states use Medicaid waiver programs to offer personal care services. Where states have different rules for elderly and disabled people, or where they only have programs for one of these categories, we have indicated that in the table also.
Table 1: Payments to Family Members, Training, and Payment Mechanisms