Washington, DC, USA. After Anna G., a 74-year-old New Jersey woman, suffered a stroke, she needed help with bathing, dressing, food shopping, laundry, meal preparation and housekeeping. Anna G's state Medicaid plan covered the cost of a home-health care worker to provide those services, but the local agencies were short-staffed and couldn’t send helpers on the schedule Anna needed. Anna’s daughter finally insisted her mother go to a nursing home.

 

When Anna refused, the New Jersey Department of Human Services gave her another option: a monthly stipend to hire her own helpers. Anna paid a cousin and a neighbor to take care of her and avoided checking into a nursing facility, a move medical experts say dramatically decreases the length and quality of an elder’s life.

 

Consumer Direction of Personal Assistance Services in Medicaid: A Review of Four State Programs. Henry Claypool and Molly O’Malley. The Henry J. Kaiser Family Foundation: Kaiser Commission on Medicaid and the Uninsured. March 2008.

 

Now, the Medicaid option — which allows elders to avoid tapping into the overburdened home health care industry — is spreading across the country. At least 18 more states already have plans to offer Cash and Counseling programs starting in 2008 or later, according to a new study by the Center for Health Care Strategies.

 

Last year, the federal government made it easier for all states to offer Cash and Counseling by eliminating the requirement to get a Medicaid waiver. In addition, the Administration on Aging gave 12 states money to offer similar programs for poor elders whose incomes are not low enough to qualify for Medicaid. These states are Arkansas, Connecticut, Georgia, Illinois, Kentucky, Maryland, Michigan, Minnesota, New Hampshire, New Jersey, West Virginia and Vermont.

 

For New Jersey, helping Anna remain in her home meant a big savings compared to the cost of institutional care. According to AARP, home-based long-term care costs up to half as much as comparable nursing home care and it is preferred by all but the frailest clients.

 

“No one wants to enter a nursing home — that’s the bottom line,” William Ditto, New Jersey’s director of Medicaid services told Stateline.org. But as baby boomers age, experts predict the demand for home health care services will outstrip the supply of trained workers, forcing many into unnecessary and unwanted institutional care.

 

Cash and Counseling programs make sense, because at least 90 per cent of long-term care already is provided by unpaid family caregivers, Ditto said. “They’re the backbone of the system. Without them, this country would be in a big mess.” 

 

The movement is part of an overall effort by states to give consumers more control over their health care spending as a way to stem spiraling costs. A new study by the Kaiser Commission on Medicaid and the Uninsured [cf. Download] reports that 42 states give Medicaid recipients some flexibility in spending their entitlement.

 

Under Cash and Counseling programs, states give clients a monthly stipend equal to the amount that would have been spent on personal services provided by a licensed agency. With the help of state counselors, clients can decide for themselves what mix of goods and services best meet their needs.

 

In New Jersey, the Medicaid reimbursement rate for professional personal care services is $16.15 per hour. Under Cash and Counseling programs, elders must pay friends and family at least minimum wage, although most pay more, Ditto said. The difference in wages leaves a lot of money left over for other services, such as cleaning and meal delivery, he explained.

 

Elders can also use the money to make home modifications or buy appliances such as microwave ovens or washing machines that help them live independently.

 

While Cash and Counseling gives seniors more choices and typically gives them a lot more services for their money, it requires work and commitment.

 

“Not everyone wants to take on that kind of responsibility,” said Donna Folkemer, long-term care expert with the National Conference of State Legislators (NCSL). “I think what states are going to do is figure out where the program might work. They’re not going to stop relying on agencies altogether,” she said.

 

Ditto agrees. “There will always be a need for agencies,” he said, suggesting the limited workforce should focus on people who do not have family support.

 

While Cash and Counseling costs states no more than traditional Medicaid programs, setting up the option involves re-training social workers and getting the word out to the community. In the past, states also had to fill out voluminous paperwork to apply for a Medicaid waiver and, in most cases, enact special legislation.

 

Cash and Counseling national program director Kevin Mahoney predicts many more states will adopt similar plans this year and next. Already this year, he said, at least nine state legislatures are considering Cash and Counseling bills.

 

In June, Mahoney’s office plans to publish a Cash & Counseling handbook. “We’re trying to make it easier for more states to get these programs up and running by giving them all the key lessons learned so far,” he said.

 

Consumer Direction of Personal Assistance Services in Medicaid: A Review of Four State Programs. Henry Claypool and Molly O’Malley. The Henry J. Kaiser Family Foundation: Kaiser Commission on Medicaid and the Uninsured. March 2008.

 

 

 

Executive Summary

 

One of the most significant developments over the last ten years in Medicaid long-term services is the growth in programs that allow Medicaid beneficiaries to direct their own personal assistance services. Consumer direction of personal assistance services (CD-PAS) is one model of service delivery that gives Medicaid beneficiaries, rather than traditional home health agencies, varying degrees of control over hiring, scheduling, training, and paying personal care attendants. This background paper draws on interviews with program administrators from four states – California, Colorado, New York, and Virginia – who were experienced with the programmatic features of CD-PAS in their state. In each state profile, we identify and discuss eligibility criteria used in each state, participant support services, and the method of financial management used by Medicaid beneficiaries to pay their direct care workers.

 

Findings

 

The number of Medicaid beneficiaries directing their own personal assistance services is small, compared to those that receive traditional agency directed services in the community, but participation is growing. Consumer direction is available in an increasing number of states across the country – 42 in 2006. While CD-PAS is a highly desirable arrangement for certain Medicaid beneficiaries, it is not for everyone. Participation rates in these four programs were around 10 percent of those eligible. Participation rates could be attributed to a lack of knowledge about the opportunity to self-direct, or a lack of ability to assume the required responsibilities of hiring, scheduling, and paying direct care workers.

 

Consumer training and support with recruiting workers for Medicaid beneficiaries participating in consumer direction varies considerably across the states. Colorado was the only state that required a training course and completion of a proficiency exam before a beneficiary can enroll in CD-PAS. The other states offer a range of peer support on a voluntary basis. CD-PAS participants face challenges recruiting direct care workers because they lack the infrastructure and economy of scale that agencies use to recruit workers. Finding workers to assist Medicaid beneficiaries with intimate daily tasks requires a significant investment of programmatic and personal resources. A registry of direct care workers is the primary method used by beneficiaries to identify workers. Both California and Virginia have established registries of direct care workers, although registries have been criticized by some beneficiaries as unreliable in their efforts to identify quality direct care workers. Registries can play a key role in helping to develop a backup plan or system to deal with unanticipated events, such as arranging for assistance when an unscheduled need arises. The San Francisco Public Authority offers an on-call service to Medicaid beneficiaries who need backup support. An appropriate backup system is an essential part of consumer direction, but not all states view it as a state responsibility.

 

Wages, benefits and training are key issues that influence a worker’s decision to accept a position as a community-based direct care worker. California and New York offer an affordable health care plan and dental benefits to direct care workers. New York’s plan also makes provisions for workers to accrue paid leave benefits. Only California had a formal voluntary training program that was available to prospective employees in consumer directed programs. The Public Authority in San Francisco developed its own training program for direct care workers to learn the basic skills necessary to provide personal assistance to people with significant disabilities.

 

Consumer satisfaction is the exclusive measure for the quality of service in consumer direction programs. Standards for measuring the quality of service, other than consumer satisfaction, do not exist.New York and Virginia had mechanisms in place to monitory quality through beneficiary satisfaction – derived from the ability of the individual to make certain personnel and scheduling decisions about the personal assistance services allocated to them. Promoting choice and control in CD-PAS should not come at the expense of beneficiaries being placed in a situation where they must choose between having the autonomy that these programs allow but receiving substandard support with personal assistance needs. While creating rigid systems that monitor health and safety may not be warranted it appears - at a minimum - that making more resources available to consumers and workers would raise the quality of CD-PAS.

 

Conclusion

 

People with disabilities have been vocal advocates for securing greater control over Medicaid community–based long-term services and supports. Consumer direction offers Medicaid beneficiaries the flexibility and independence to individualize their services. Having greater control over these services is a high priority for some, but not all Medicaid beneficiaries with disabilities. The reasons appear to vary, but it is important that these individuals continue to have a choice regarding their assumption of the responsibilities that come with consumer direction and that it not be forced on those that do not desire this type of arrangement.

 

This analysis of consumer direction in four states found substantial variation in key programmatic features and unevenness in resources devoted to Medicaid beneficiary supports. As states and advocates continue to develop programs that give beneficiaries greater control and responsibility over their personal assistance services careful consideration should be given to how best to support the Medicaid beneficiary. In addition, consumer direction is possible without using an individual budget model, as evidenced by the three states in this study that rely on other models of consumer direction including the public authority and fiscal/employer agent models.

 

As states move forward with consumer directed options in Medicaid, there are several issues that need further examination and analysis. They include building additional support for people that desire these arrangements so when they enter into these programs they are able to have a sense of security that should part of their support system fail them on a particular day, they have resources to turn to for assistance. Secondly, the need to better understand the issues that affect direct care workers such as wages and benefits is important. In the field of home and community-based services, the evolution of consumer direction warrants close monitoring and further examination to identify ways to optimize the delivery of the services and supports and to maximize the positive outcomes for Medicaid beneficiaries.

 

 

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