DorlandHealth

To better understand the intricacies of the consumer direction movement, Richard Scott sits down with Pamela Doty from the Department of Health and Human Services who authored the study New Strategies to Meet Long-Term Care Needs that appeared in an early January issue of Health Affairs.
 

Can you describe consumer-directed long-term care service programs?

These are service delivery models designed to empower people with chronic disabilities and their families. They gain considerably more choice and control over the who, what, where, when of their home and community-based long-term services and supports than they would have in a more traditional “provider-driven” system.

What do these programs hope to achieve?

The goal is a more flexible service system that is able to be responsive to what service users and families want. We have observed that different constituencies tend to be drawn to consumer direction for somewhat different reasons. For example, among older people, the main motivation is typically that they want to have home care workers whom they know and trust, individuals who know them and their preferences and that they feel comfortable with.

This often means that older people choose consumer direction because this allows them to hire family, friends, and neighbors as their paid caregivers rather than rely on “strangers” from an agency, especially because the evidence indicates that there is much greater turnover among agency workers. Among younger people with disabilities, a major complaint is that the traditional service system is about custodial care (i.e., providing help with personal care and housekeeping tasks as well as protective supervision) instead of promoting independence and enabling them to lead more fulfilling and “self-determined” lives.

The traditional system seems to them to be sending the message: just be grateful you get to be at home instead of being institutionalized—but program participants and families who are drawn to consumer direction and willing to take on the extra responsibilities involved want more than that.

We have seen some incredible success stories. For example, Tanya, a young woman in Florida with intellectual developmental disabilities, was 32 years old when she joined the Consumer-Directed Care program. The traditional Home and Community-Based Care program she had previously been in paid for Tanya to attend an adult day habilitation program every weekday; she was picked up in the morning at home and dropped off every afternoon by the center’s transportation service.

According to Tanya’s mother, this was in no way a “bad” program and Medicaid spent quite a lot on these services. Even so, all that day care really did for Tanya was keep her safe and entertained while her parents were at work. This meant that aside from time with her family, Tanya spent most of her life in the company of other developmentally disabled adults and paid providers. However nice the setting, it was effectively part-time institutionalization. Tanya behaved much like a pre-school child—even to the point of carrying a stuffed animal (“Barney” the purple dinosaur) with her everywhere. She was so childlike that her parents felt they could not trust her with a key to the house so one of them always had to be at home when she was picked up or dropped off by the center’s van service. They worried that if anything ever happened to them—and surely Tanya would be expected to outlive them—she would have no recourse but to move into a group home.

To make a long story short, after Tanya and her parents opted to try Consumer-Directed Care, they hired a “coach” to work with her one-on-one. She got a volunteer job feeding, watering and cleaning up after the animals at a pet shelter, which then led to paid work at a pet shop. Step by step, Tanya started to become more independent and responsible. She stopped carrying Barney everywhere and began to dress like an adult. She learned to take public transportation, made friends and visited them on her own, and her parents entrusted her with a key to the house. When the pet store where Tanya worked went out of business, they decided her successful work history justified approaching Voc Rehab and insisting that they take her on as a client, which the agency had previously refused to do on the grounds that Tanya was so intellectually disabled that job training would be wasted on her.

After receiving training, Tanya was able to get a job as a cafeteria worker that paid well enough (but not so well as to cause her to lose Medicaid support) that she moved into a supported living apartment with a roommate (and a live-in paid aide who could provide them with help in the evening when they returned home from work and before they left for work in the morning). Although we would not claim that consumer-direction is always or even usually so transformative, Tanya’s ability to make use of the program’s flexibility to become more independent than anyone had previously thought possible was also far from unique.

Your article mentions two models of consumer-directed services. Can you describe these?

The Centers for Medicare and Medicaid recognize two distinct models, within which there may be some variants. The older and more widely available model, referred to as “employer authority” consumer directed services, focuses exclusively on personal aide services. It gives program participants or their representatives (in the case of minor children and people with severe dementia or other significant cognitive impairments) the right to hire/fire, schedule, train, and supervise individual workers and participate in paying them by signing off on time sheets.

In these programs, case managers carry out needs assessments (typically using a standardized assessment instrument) that determine how many hours of aide service the program participant may receive. The state controls costs by setting the hourly wage rate for consumer-hired individual workers. The newer model, referred to as “budget authority” consumer-direction, controls costs by giving program participants a budget (typically a fixed monthly allowance).

This model is exemplified by—but no longer limited to—the 15 states that participated in the grant-funded Cash and Counseling Initiatives. The size of the budget is determined by a case manager’s professional needs assessment and a formula that converts the case manager’s assessment into a budget allocation. Generally speaking, the budget allocation is based on what traditional providers would be paid for delivering services to this same individual given his or her assessed needs. Unspent funds can be carried over from month to month, unless large amounts build up, which, in order to continue to remain available to the program participant, must then be earmarked as savings for a specific purpose.

Program participants can use their funds to employ individual attendants as in the “employer authority” model, but they have the additional flexibility to negotiate wages and benefits with their workers. However, they may also use their funds to purchase other kinds of services and supports (such as assistive technologies, home modifications, transportation, continence pads and other personal care supplies, etc.) and they can purchase nontraditional goods and services from nontraditional providers and suppliers. For example, the definition of assistive technology is not limited to specific types and models of durable medical equipment purchased from a program-authorized medical equipment supplier. It could, for example, be a microwave oven or a computer if such technologies promote the program participant’s independence.

Finally, key components of the budget authority model are services that support consumer direction. Program participants may feel comfortable employing and supervising individual workers but very few want to take on the employer-related responsibilities of filing payroll taxes on behalf of their workers. Accordingly, the state provides program participants with support in the form of an accounting service that acts as their payroll agent and provides other financial management assistance. In addition, all program participants receive one-on-one assistance from a “counselor” (some programs prefer to call them consultants, advisors, or support brokers). Although program rules are very flexible, program participants cannot spend their funds on goods and services that cannot be justified as meeting disability-related needs.

Thus, program participants have to develop a written plan and counselors check to make sure that their planned purchases are within the state’s guidelines. If it is unclear whether or not a planned purchase is or is not allowable, the question is referred to program administrators for a decision. The accounting service only pays bills in accordance with an approved plan—which can be amended and reapproved at any time so long as planned purchases are within the budget. This system has worked well to ensure that self-directing program participants and their families do not make unauthorized use of their funds.

In a nutshell, what is the Cash and Counseling initiative(s) and why is it important?

Actually, the two Cash and Counseling Initiatives proved so successful that they put themselves out-of-business so to speak. The positive findings—especially with respect to satisfaction with services and other quality measures—from scientifically rigorous evaluations convinced Congress and the Centers for Medicare and Medicaid to change Medicaid law and regulations so that states no longer require special authorization or grant funding for “cash and counseling” programs. Any state can now implement budget authority consumer-directed services as a regular option within Medicaid.

The Cash and Counseling National Program Office has been replaced by the National Resource Center for Participant-Directed Services at the same location (Boston College School of Social Work). The mission of the NRCPDS is to work with state Medicaid programs and other public programs (such as those funded by the Administration on Aging and the Veterans Health Administration) to implement “cash and counseling” options—although typically they are given distinctive local names, rather than being called cash and counseling.


What is the general awareness of these programs?

Among public program administrators involved with home and community-based services, at federal, state, and local levels, awareness is virtually universal. Centers for Medicare and Medicaid officials report that over the past several years, they saw an upsurge in states electing to offer such options—especially, of course, after the changes in federal Medicaid law, regulations, and policies made it so much easier for states to do so. Indeed, it has now become difficult to keep track of all the consumer-directed programs since states typically develop several, each one targeted to a different constituency (e.g. the elderly, physically disabled younger adults, children and adults with developmental disabilities and sometimes even more specialized programs for people with brain injuries, spinal cord injuries, etc.).

The NRCPDS expects to have completed a descriptive inventory of all publicly-funded consumer-directed home and community-based services programs as of March 2010.

What is the main takeaway from this new analysis?

Having strong policy research evidence that a social program innovation works—in this case, that offering cash and counseling options results in positive outcomes for people with disabilities and their families—does not mean that it becomes easy to implement. The economic recession and its effects on states makes for a daunting environment for public program innovation. But, with patience, persistence—and knowing when to seek technical assistance—program administrators can successfully address implementation challenges.

What do case managers and other care coordinators need to know about such programs?

They need to understand that their jobs will change—for the better. Some “traditional” case management functions remain the same or much the same. Case managers retain responsibility for carrying out individualized needs assessments, for example. However, in a “budget authority” consumer-directed services program (aka cash and counseling model), once program participants have a budget allocation, they and/or their family caregivers develop their own service plans. Their former case managers typically become their “counselors.”

This may appear to some as a “demotion” of sorts and cause them to resist referring clients to self-directed service options. But the best case managers find that the change in role empowers them as well. This is because the best case managers are acutely sensitive to the needs and preferences of their clients and feel quite frustrated when all they can put into a care plan are the standard offerings on the traditional “menu” of covered services and in some states those choices are very limited indeed. State strategies for cost containment may also strictly limit the amounts of those services that case managers can authorize.

Along these same lines, case managers can only make arrangements with authorized providers and these providers may not have the capacity to deliver all authorized services or do so reliably. If their clients complain about this, what can case managers really do to remedy the problem if these agencies are the only allowed providers? On the other hand, when a self-directing program participant receives a budget allocation, these constraints go away. The ex-case manager now counselor is free to use his or her real professional skills to brainstorm with program participants and family caregivers to custom design a service plan that will truly meet their needs.

One of the functions of the NRCPDS at the Boston College School of Social Work is to develop training materials that program administrators can use to help case managers make the paradigm shift from case management in a traditional provider-driven service system to “counseling” program participants who choose to self-direct.