Consumer-Directed Long-Term Care Workgroup

Christal Stone, AcademyHealth Staff

Summary of Kick-Off Conference Call May 18, 2006, 3:00 p.m. – 4:00 p.m EDT

May 24, 2006

This was the first call of the Consumer-directed LTC Workgroup. The purpose was to discuss issues related to Consumer-Directed Long-term Care (CD-LTC), establish where members interest lay to narrow down the topic, and begin developing an activity for the group.


A.E. Ted Benjamin (WG leader), UCLA

Al Schreitmueller, Assist Guide

Linda Bergofsky, ASPE/HHS

Brenda Spillman, Urban Institute

Lee Goldberg, SEIU

Stu Gufstein

Steve Edelstein, Paraprofessional Healthcare Institute

Gregory Rhone, Delaware Department of Health and Social Services

Teresa Scherzer, University of California, San Francisco

Virginia Dize, Nat. Assoc. of State Units on Aging (NASUA)

AcademyHealth Staff:

Kristine Metter

Christal Stone


This workgroup was initiated from Randall Brown’s presentation at the 2005 LTC Colloquium and 2006 LTC Policy Seminar. AcademyHealth’s role is to staff the workgroup, provide outreach, and help disseminate potential products. The goals of the LTC workgroups are to discuss relevant LTC issues, form working relationships, and potentially create a useful product. The workgroup breakfast at the 2006 Colloquium on June 24 in Seattle will be an opportunity to meet, talk, and determine the direction of the group.

Each member of the group introduced themselves and spoke on their specific background and interests in this topic.

Al Schreitmueller: Part of a small company looking at the New Freedom Initiative, technology, and web access for older people. Address needs - challenges to adult children and assist with sorting through information and act quickly. Looking for a broad perspective on CD-LTC.

Linda Bergofsky: As part of ASPE/HHS, worked on the RWJF Cash & Counseling Demonstration,

Project Officer for Sec. 648 demonstration in MMA. Interested in applying lessons from

Medicaid to Medicare. Working with CMS on Real Systems Change Grants.

Brenda Spillman: At Urban Institute, focuses on utilizations and financing. Working on the expansion of C&C to other state Medicaid programs.

Lee Goldberg: The long-term care policy manager at SEIU, which represents care workers including those in independent provider programs. CD-LTC is one form of HCBS that they like.

Teresa Scherzer: Researches worker and workforce issues, including those of homecare workers.

Conducted a qualitative study on occupational safety in homecare. Interested in how the changing employment infrastructure enabled by CD-LTC impacts workers. Interested in highlighting the shared interests and linkages between consumers and workers.

Gregory Rhone: Works with Delaware’s Medicaid program and is writing the Delaware response to consumer-directed care.

Steve Edelstein: PHI provides technical assistance to CMS for direct service workforce. Interested in understanding how CD-LTC models affect quality of service jobs.

Ted Benjamin: Researching consumer direction for 10 years.


TB: Due to C&C and the experience of other programs and federal initiatives, consumer direction is now more mainstream (rather than just in academic journals). Shifting control of resources to different recipients has caught on—1/2 of states have applied to C&C in Round 2.

TS: Imperative to mainstream link between worker and consumer well-being. Concerned policymakers aren’t always responsive to worker concerns.

LG: Also concerned that many states experimenting with CD-LTC are only thinking about it from the perspective of the consumer, not the worker. Policies need to work for all the stakeholders.

Evals of C&C look good compared to agency models but there are no comparisons with different

CD-LTC models.

LB: Noted that HHS is also looking at workforce issues along the entire continuum of LTC.

TB: The workgroup should focus on their analytic, descriptive role in this process of assessing the state of the field.

—All agree.

LB: Interested in how the philosophy of “self-determination” (patient centered, risk management, choices) is blending with the operational “self-direction” (piece of a specific benefit is transferred to one’s control). Where will it go next?

TB: Different constituents (i.e. cognitively impaired) have different roles in self-determination.

Now CD-LTC has a one-size-fits-all problem. What are the goals of CD-LTC? What is the model?

SE: Helpful if understood the current models—where they work best? For which populations?

Which circumstances? Are there lessons from these programs that can be projected forward?

TB: Multiple models are not really categorized. Virtually every state has a CD-LTC program of some sort. California has the biggest and not thinking about C&C.

BS: Has collected a lot of info on state programs. Difficult to categorize what is consumer direction and what is budget authorized. Thought movement towards CD-LTC was strange if choices not available to Medicaid recipients.

TB: Clarified that C&C was a creative, innovative new model that came from a tradition of consumer-direction. Borrowed from European models. This may be the dominant model in the professional journal, but it’s not what the majority of the state are doing.

BS: Would like to quantify how many people have access and utilize different CD-LTC plans.

TS: Some of that data is compiled on her website.

TB: There are some state only programs not part of Medicaid.

LG: Most states are open to consumer directed models. Some states, however, are still committed to agency models. What are the barriers to advancing CD-LTC?

TS: States are setting themselves up as legal employers with financial management services for workers not affiliated with agencies to mitigate liability issues.

SE: The business strategy of the agency model can be in conflict with consumer-directed models.

It’s a different way of doing business.

TS: Some agencies are going after this market share by giving more choice.

LB: But agencies are only doing it for certain clients—Medicaid versus other payers.

TB: Future of CD-LTC. Can the idea of choice catch on more broadly within LTC? Example-

Nursing homes with more choice. What can we expect? We can speculate on the early evidence.

Example- VNSNY is integrating ideas of choice into agency-based services. Does the agency model have to be at odds with consumer-directed models? Why are some states more firmly committed to the agency model? Political and/or technical reasons.

TB: Begin with different constituencies and linkages to consumer and worker well-being. More broadly how to add concerns of multiple stakeholders.

LG: In the nursing home arena, there is work on what reimbursement system is better for incentives to have higher staffing levels. Home care is less complex. Are there payment systems

that give incentives for consumer-directed care? Is there any research on the impact of reimbursement design on quality of care?

TS: Biannual survey done by UNC and Paraprofessional Health Institute has done some economic analysis and wage pass throughs.

Major Themes

Reimbursement and payments—incentives; determining who is entitled to what

Dissemination of CD-LTC models

Distinguishing boundaries of different models and variations on a model

Understanding variations across states and what that means

Agency models versus consumer-directed models—factors that influence why states choose one or the other

Effects of different models on the quality of the workforce

Effects on worker-consumer well-being; how different constituency interest are balanced

Self-direction and self-determination—implications for varied consumers

Impact of fear of costs—promise of saving money, but may not—evidence is scant

Strategies on how to link joint interests—boundaries very important

How states develop care/service plans for CD- and beyond personal assistance services


Hoe states assume responsibility – how they balance risk/protection with choice.

Next Steps

Agree on a topic (s)—may choose to focus on one or two sub-topics

Identify feasible task(s) to address topic o

Research agenda o o

Policy brief

Advance an analysis of one or two states