Innovative Practices
Indiana has been a pioneer in two very different directions for expansion of LTSS. Through the actions of a broad-based commission on HCBS, bolstered by gubernatorial and legislative support, the state has put into place, in effect, a graduated schedule of reforms that should enable it to keep its reform momentum going even in the face of tough fiscal times. At the same time, the state has managed to develop and strengthen a state-funded home- and community-based program that has strong and continuing support from the political and advocacy communities.
Governor’s Commission on Home- and Community-Based Services: The commission called its report with its comprehensive series of recommendations “a blueprint for reform in Indiana.” Mindful of the state’s tight fiscal situation at the time, but also because of the “opportunities presented by the upcoming legislative session,” the commission said it tried to frame many of its initial recommendations in terms of achievable results. For example, in its December 2002 Interim Report, the commission said it proposed to identify the “most significant of the long-term care service delivery barriers and to develop comprehensive recommendations in response.” Taking note of this strategy, NCD said in September 2003 that the commission’s “effort to prioritize activities that could begin immediately and at little short-term cost is exemplary and should serve as a model for other states.”
One such immediate activity with little short-term cost was pursuing federal grant opportunities. The FSSA lost no time in applying for such grants and reported that it received a total of $6.4 million in FY 2002 and FY 2003, mostly from the Real Choice Systems Change Grant program under the New Freedom Initiative. One $1.4 million federal grant helped to create and staff the Governor’s Commission and also went toward the distribution of mini-grants to communities around the state to stimulate creative community thinking about independent living for people with disabilities. The state awarded $430,000 to 12 communities in February 2003 and another $320,000 to 11 communities in May 2003 in mini-grants of up to $40,000.
Projects were to encourage innovation in community living, housing, transportation, supported employment, and caregiver support. Activities funded through the mini-grants include, for example, training for Indianapolis housing suppliers and consumers to increase the availability of community-based housing for people with disabilities, support for Bloomington’s continuum of services for adults with developmental disabilities and/or mental illness, and the development of resources in New Palestine that enable homeowners with disabilities to access home repair or modification services.
Other commission recommendations also saw quick action by the state, such as implementing spousal impoverishment provisions in the Aged and Disabled Waiver program similar to the provisions applicable to nursing home care. A waiver amendment to allow this action was approved by the Federal Government in February 2003. (For additional information on commission proposals and subsequent state actions, see Appendix 4.A.)
One major commission recommendation (i.e., to raise the monthly income standard for the Aged and Disabled Waiver program to 300 percent of SSI), however, proved to be more problematic because of cost concerns. An initial state estimate of the additional first-year cost of the change was $2.7 million. FSSA contracted with the Lewin Group to conduct a more comprehensive analysis of the fiscal impact of this proposed change and the addition of 20,000 waiver slots mandated by S.B. 493. The report was due by November 2004.
The commission also established Benchmarks for Measuring Success for each of its recommendations. For example, for the Adult Foster Care Medicaid waiver program, the benchmarks included implementation of the program, development of an adult foster care consumer base (with the number of consumers increasing each quarter), and development of an adult foster care provider base (with the number of providers increasing each quarter). However, the commission expired at the end of 2003, leaving open to question how monitoring would be conducted in the future.
CHOICE: Although many states offer limited state-funded services for people whose low incomes still do not qualify them for Medicaid-funded services, Indiana has a 12-year-old comprehensive state-funded program that continues to be popular not only with consumers and advocates but also with legislators and other policymakers. The CHOICE program has lasted through tough fiscal times and continues to gain strength.
The CHOICE program has received national recognition since its inception in the late 1980s, largely because it fills a gap for low-income people who are not eligible for or are waiting for Medicaid services. People must be at least 60 years of age (or any age with disabilities) and unable to perform at least two ADLs as determined by an assessment.
There are no financial eligibility requirements for CHOICE. However, cost-sharing on a sliding fee scale is required of people with annual incomes between 150 percent and 350 percent of the federal poverty level. People with incomes below 150 percent of the poverty level are not required to pay for services; people with incomes above 350 percent must pay the entire cost of their services.
Covered services include case management, home health supplies and services, attendant care, homemaker services, respite care, home-delivered meals, adult day care, transportation, minor home modifications, adaptive aids and devices, and other necessary services. The program is operated locally by Area Agencies on Aging. At least 20 percent of an Area Agency on Aging’s CHOICE service dollars must be used for people under the age of 60 with disabilities.
Future Plans and Challenges
Although Indiana still has many challenges to face to overcome its earlier bias toward institutionalization, the state has made considerable progress in recent years in offering many more people with disabilities the option of living independently in the community. The strides made in the last two to three years are impressive compared with the state’s past record in providing home- and community-based options for people with disabilities. The state-funded CHOICE program continues to receive strong ongoing support from public officials.
The executive and legislative branches of the Indiana government have shown a convincing commitment to continuing this forward movement. In 2003, the state set a goal of creating community options for 1,000 more seniors and 1,000 more people with disabilities over two years. Several federal grants are helping to keep the momentum going, and local efforts supported by mini-grants should help develop new initiatives.
Representative Peggy Welch, vice chair of the Assembly Public Health Committee, says that “implementing what we’ve got and how to pay for it” is a major challenge for lawmakers. Legislators are committed to expanding home- and community-based care, she says, but they worry about the short term. “We seem to be improving our economic status,” she says, but FY 2005 “will be a tough budget year.”
Another key stakeholder, Beth Quarles, chair of the Indiana Independent Living Center, is concerned that no group is charged with monitoring activities that have been recommended by the Governor’s Commission. “We need a group to conduct follow-up reviews,” she says, and to distribute results to stakeholders around the state. Federal or state money needs to be invested in that follow up, she adds. Attachment 4.C
Selected Recommendations of the Governor’s Commission on Home- and Community-Based Services
The status of some of the commission recommendations was provided by FSSA secretary Cheryl G. Sullivan in a November 10, 2003, letter to commission chair Katie Humphreys. Secretary Sullivan said that “in prioritizing its efforts and commitment given available resources,” all 18 of the commission’s recommendations that were directed to FSSA could not be accomplished within the commission’s proposed time frame.
• Implement a diversion project that presents consumers with real alternatives to nursing home placement. FSSA worked with Area Agencies on Aging (AAAs) to provide discharge planners in hospitals to offer consumers community alternatives to nursing home care. In addition, FSSA worked with the AAAs, Independent Living Centers, and the Nursing Home Coalition to fund two separate conversion team projects to work with families in moving individuals from nursing homes. The agency hoped to pilot the project in other parts of the state. As of March 2004, there had been 780 diversions (people who chose alternatives to nursing home care) and 60 conversions (people who left nursing homes for home and community settings).
• Reduce to 20 days the time involved in determining Medicaid eligibility and in initiating services. Applicants must often wait months, the commission said, for the process to be completed. The process had been reduced to 39 days and, as of August 2003, the agency had established a centralized Medicaid financial eligibility determination unit.
• Develop the infrastructure for a consumer-directed program that includes policies for fiscal intermediary services; information, education, and training for consumers, workers, and providers; a training curriculum for case managers; and a marketing plan. FSSA received a $725,000 Systems Change Grant in 2002 to expand consumer-directed personal attendant care under the Aged and Disabled Waiver. The state has developed a Consumer Manual and an Attendant and Case Management Manual available for use electronically and in print versions.
• Add Adult Foster Care as a service to the Aged and Disabled Waiver program. FSSA said that Adult Foster Care was a service component of the waiver and explained how the agency was working to expand the service. FSSA had finalized Foster Care Certification Standards, and was working on outreach for the program. The agency said quality assurance “would be a major challenge” as the program expanded, but it had applied for and received federal grant funding to “enhance the infrastructure” for quality assurance.
• Fully and immediately develop the Assisted Living Waiver. The program had been funded since July 1, 2001, but had signed up few providers. The secretary reported that the agency had hired a manager to specifically direct this program in early 2003. After that, FSSA developed new application materials and a marketing presentation for the program. The agency presented the material at the annual conference of the Indiana Association of Assisted Living Facilities as well as at three regional meetings. FSSA also reported having engaged in discussions with two major assisted living providers and public housing authorities in three areas.
• Expand Adult Day Services efforts. FSSA said it continued to increase community-based options and had 42 certified sites to provide Adult Day Services. Because of increased marketing, the agency said, it was receiving on average three contacts per week of entities interested in becoming providers of these services. FSSA said it was “working closely” with the Indiana Association of Adult Day Services in providing technical assistance for new providers.
Part III
Conclusion
Key shared features of the movement forward by the five selected states are (1) an ongoing intensive planning process that involves policymakers with all critical stakeholders, (2) organization changes in the management of budget and service delivery, and (3) a focus on expansion of consumer choices to respond to individualized needs.
The planning process. A number of factors combine to make for an effective planning process:
• A comprehensive endeavor that involves a full range of stakeholders—from state officials to providers to advocates and people with disabilities themselves—and the commitment and support of the governor and legislature.
• Final plans with realistic recommendations that take into account the state’s fiscal situation but also take advantage of available federal money, develop community partnerships, and implement cost-limited regulatory changes.
• The setting of benchmarks to measure results and to place responsibility for tracking and reporting the results to policymakers and the public.
Structural changes. Although it is difficult for states to quantify the impact of merging and consolidating state agencies, state officials believe that services can be delivered more effectively and efficiently after such moves. They also argue that combining nursing home and home- and community-based dollars means that they can allocate funds according to the needs of people with disabilities rather than to cost centers.
Consolidation at the state level also means local-level changes that can make access to services easier for consumers and that simplify and speed the application process. There is also a trend toward establishing single-point-of-entry systems at the local level that has been adopted by many states and encouraged through federal grants to make for easier access to LTSS.
Global budgeting. States are hampered in expanding HCBS by budgeting practices that maintain separate line items for nursing homes and HCBS and by separate funding sources, such as Medicaid, Older Americans Act funds, and state general revenues, which are often administered by separate agencies. Several of the study states have developed strategies to use savings from limiting nursing home use or to transfer dollars that were previously allocated to nursing homes to people who move from those institutions to community settings.
The most far-reaching approach, however, has been to budget for both institutional care and HCBS within the same agency and to tap pooled funds to meet care needs in any setting. Called “global budgeting” by some policymakers, this practice allows states the flexibility to respond to the preferences of people with disabilities to remain at home or in the community.
Broadening home- and community-based services. Allowing greater numbers of people with disabilities the opportunity to direct their own care (hiring, training, and supervising their workers) has become a major objective not only of the five selected states but of many other states as well. Federal grants are helping many states consider how to educate consumers about the option, provide them with training, and set up fiscal intermediaries to assist consumers with bookkeeping and taxpaying. The selected states are also using the Medicaid waiver amendment process to broaden benefits, help more people, and provide services in a variety of residential settings.
What each of these five states has accomplished provides lessons to be learned for future policy development at the state and federal levels. An analysis of activity across the five selected states resulted in the identification of 10 findings that will help inform the design of the 21st century LTSS system:
1. Response to the Olmstead decision stimulated executive and legislative review of the current system of service delivery, unmet needs of target populations, and where the dollars are being expended.
2. Cross-agency planning with consumer stakeholder voice was included as part of the process to develop recommendations for systems reform.
3. Structural changes have involved substantial reorganization to an umbrella department for multiple target populations with LTSS needs.
4. Change in structure has given emphasis to streamlining eligibility determinations, improving access to information for consumers, and rebalancing funding between community and institutional settings.
5. All five states have embraced principles of self-determination with varying degrees of choice and control. This has led to expanded opportunity for greater numbers of people to manage and direct support and service plans with the assistance of service brokers/coordinators and fiscal intermediaries.
6. The states continue to expand their use of Medicaid waivers to broaden benefits and long-term services to subpopulations.
7. All five states have encountered federal policy barriers that restrict their flexibility, increase their costs, and reduce capacity to meet individual needs at home or in the least restrictive settings. The most restrictive policy most frequently identified was the Medicaid institutional bias.
8. There remains confusion in the use of language regarding long term care and long term supports and services. The traditional term has been “long-term care.” Long-term care is the more frequently used term to describe needs that include personal assistance with daily living activities through nursing facility services and home care. The confusion often is a result of the medically oriented funding base of the primary funding stream (Medicaid), which covers a range of LTC services, including institutional and community-based services. Medicaid community-based services include personal care, targeted case management, home health, transportation, habilitation, and home modifications. The language being used is not keeping up with the philosophy as the pace of change varies across states.
9. All selected states have waiting lists for specific target subpopulations, even though states may limit services and operate the waiver on less than a statewide basis.
10. Current budget challenges at the state level have compelled states to reexamine the balance between public and private responsibility for LTSS, evaluate approaches to target individuals based on an assessment of level of need, and seek to identify strategies that encourage coverage of supports through some type of insurance coverage and other private sector resource sharing.
Appendix 4.A
Stakeholders Interviewed for State Case Studies
• State Senator Linda Berglin, Chair, Minnesota Health and Human Services Budget Committee
• Pat Casanova, Director of Waiver Services, Indiana Division of Disability, Aging, and Rehabilitation Services
• Cathy Cochran, Olmstead Coordinator, Washington State Department of Social and Health Services
• Bernard Dean, Senior Fiscal Analyst, Washington State House Appropriations Committee
• Melissa Durr, Executive Director, Area Agency of Aging; Chair, Hoosiers for Options (represents the major long-term care stakeholders in Indiana)
• Patrick Flood, Commissioner, Vermont Department of Aging and Independent Living
• Marc Gold, Director, Texas Medicaid Long-Term Care Policy
• Emily Hancock, Director of Long-Term Care, Indiana Office of Medicaid Policy and Planning
• Brendan Hogan, Director of Long-Term Care Services, Office of Vermont Health Access
• Adelaide Horn, Deputy Director, Texas Department of Aging and Disabilities
• Katie Humphreys, Consultant, Health Evolutions; Chair, Indiana Governor’s Commission on Home- and Community-Based Services; Former Secretary, Family and Social Services Administration
• Lois Johnson, Chair, Minnesota Independent Living Center
• Steve Kappel, Associate Fiscal Analyst, Vermont Joint Fiscal Office of the Legislature
• LaRhae Knatterud, Planning Director for Aging Initiatives, Minnesota Department of Human Services
• Debra Leese Baker, Executive Director, Vermont Independent Living Center
• Kathy Leitch, Assistant Secretary, Aging and Disability Services Administration, Washington State Department of Social and Health Services
• Steve Lerch, Senior Research Economist, Washington State Institute for Public Policy
• Kathy Norris, Senior Fiscal and Program Analyst, Office of Fiscal Management Analysis, Indiana Legislative Services Agency
• State Representative Pat O’Donnell, Vermont Appropriations Committee
• Beth Quarles, Chair, Indiana Independent Living Center
• State Senator Pat Thibaudeau, Ranking Member of the Washington State Health and Long-Term Care Committee
• State Representative Peggy Welch, Vice Chair, Indiana Public Health Committee
• Peter Youngbaer, Executive Director, Vermont Coalition on Disability Rights; former state legislator
Chapter 5
Moving Forward: Local and Individual Strategies for
21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities Table of Contents
Chapter 5
Page
Part I
Introduction 439
Part II
Conclusion 486
Part I
Introduction
At the individual, family, and community levels, the public and private sectors are working together to design new strategies to provide accessible, affordable long term services and supports to meet the needs of individuals with disabilities and people who are aging. Criteria used to identify promising practices included the documentation of (1) alternative financing approaches or relationships; (2) support of consumer choice and direction; (3) nontraditional housing and service delivery models that expand supply and access; (4) response to workforce quality and retention challenges; (5) support of family caregivers; (6) promotion and preservation of resources and assets; and (7) replication potential.
Each of the highlighted initiatives builds on strengths of partnerships at the local level and offers the target audience expanded choices for community inclusion and participation. None offer comprehensive solutions to the challenges of meeting LTSS needs in the future. However, similar to the profiled state experiences, each highlighted strategy offers policymakers additional possibilities for inclusion in a more comprehensive systems approach to LTSS needs in the future.
The following table provides an overview of the selected local or individual strategies that realign service and financial relationships. For each initiative, the table includes a brief description, what can be learned from the implementation of the strategy, and program contact information.
Table 5.1. Selected Local and Individual Strategies
Worker Cooperatives—Waushara County, Wisconsin
Description What Can Be Learned Contacts
The home care worker co-op helps about 82 individuals who are elderly and/or who have disabilities live independently in their own homes. The 74 worker-owner members now enjoy higher wages, workers compensation, health insurance, and profit sharing. Was a finalist this past year in the Harvard “Innovations in American Government” award. The U.S. Department of Agriculture is looking at replication with planning grants to projects in Hawaii, Washington, Colorado, and Nebraska. Response to workforce issues of low pay and poor retention. Different approach to organize service delivery. Kathleen McGwin, Executive Director
Cooperative Care
PO Box 620
402 E. Main Street
Wautoma, WI 54982
Phone: 920-787-1886
mcgwin@co-opcare.com
http://co-opcare.com/
Time Banks/Time Dollars—Washington, D.C.
Description What Can Be Learned Contacts
Time Banks are based on the concept of people using their time as money. Communities that are “cash-poor, time rich,” are able to trade their time providing each other with valuable services to benefit people with disabilities and families. The system is based on equality: one hour of help means one Time Dollar. Provides a way for individuals with time to give, but little income, to get the services they need. The elderly and individuals with disabilities are able to secure personal assistance, shopping, and other support services they may need. They are also able to offer services themselves on behalf of people with similar challenges. Time Dollar Institute
5500 39th Street, N.W.
Washington, DC 20015
Phone: 202-686-5200
contact@timedollar.org
http://www.timedollar.org
Together We Can—New York City
Description What Can Be Learned Contacts
One of two approaches to affordable housing that offer nontraditional choices to individuals with disabilities with limited income. Together We Can offers affordable cooperative living with limited equity shares to keep prices well below market rate. Response to unmet critical need for affordable housing without being locked into specific service menu or provider. Jim Gray, Vice President
Together We Can
NCB Development Corporation
1725 Eye Street, N.W., Suite 600
Washington, DC 20006
Phone: 202-336-7642
jgray@ncbdc.org
http://www.ncbdc.org/ (The link can be found under “Affordable Co-op Housing.”)
No Place Like Home Communities—Robbinsdale, Minnesota
Description What Can Be Learned Contacts
One of two approaches to affordable housing that offers nontraditional choices to individuals with disabilities with limited income. No Place Like Home Communities offers homeownership and subsidized rental options within a rehabilitated multifamily development that also includes a range of supportive services. Response to unmet critical need for affordable housing without being locked into specific service menu or provider. Emily Fuerste, Executive Director
No Place Like Home Communities
4101A West Broadway
Robbinsdale, MN 55422
Phone: 763-537-0170
info@nplhc.org
http://www.nplhc.org
Self-directed Support Corporation—Baltimore, Maryland
Description What Can Be Learned Contacts
A Microboard designs supports for one person as an alternative to traditional long-term care providers. The Board members of a legal nonprofit corporation make a personal commitment to the individual with a disability to assist with person-centered planning. It is recognized by the state as the employer of record to provide or purchase support services for the individual. Different approach to service delivery and consumer direction. Jackie Golden
Inclusion Research Institute
1010 Wisconsin Avenue, N.W.
Suite 340
Washington, DC 20007
Phone: 202-338-7253
jlgolden@comcast.net
http://www.inclusionresearch.org
Pooled Trust—Bedford, New Hampshire
Description What Can Be Learned Contacts
Pooled Trusts provide an efficient and economical way to have trust funds administered for people with disabilities that will supplement the benefits offered by public programs. The assets placed in trust by parents or others are allocated to a separate subaccount. The assets from all subaccounts are pooled together to invest and manage as one larger amount. Financial service that offers responsible decision making and protection of assets to remain eligible for means-tested government benefit programs. Enhanced Life Options Group
15 Constitution Drive, Suite 169
Bedford, NH 03110
Phone: 603-472-2543
contact@elonh.org
http://www.elonh.org/
Child Trust Fund—United Kingdom
Description What Can Be Learned Contacts
Through the Child Trust Fund, each child born in Great Britain from September 2002 is eligible to receive government funds for the purpose of opening an account that matures at age 18. Families below the poverty level will receive an additional allocation of funds double that of other children at birth. A similar strategy with restricted use of funds for children determined to have a certain level of need for future long-term supports and services might be evaluated as an alternative (supplemental or complementary financing strategy to current college 529 plans or individual retirement accounts). Child Trust Fund Office
Waterview Park
Mandarin Way
Washington, NE38 8QG, United Kingdom
Phone: 08453-021470
childtrustfundoffice@ir.gsi.gov.uk
http://www.childtrustfund.gov.uk/Homepage/fs/en
Worker Cooperatives—Waushara County, Wisconsin
Background
Many individuals who require long-term supports and services (LTSS) may only need assistance with such activities as dressing, bathing, feeding, shopping, meal preparation, and housework to allow them to live independently in their own homes. Research suggests that home care maintains the recipient’s dignity and independence. The supports and services that home care workers can provide to these individuals allow them to remain in their homes, providing them with a preferred alternative to a nursing home or other facilitated care setting. In addition to helping to maintain a person’s dignity and independence, in-home care is much more cost-effective than institutional care. Research also clearly documents that the demand for home care will only increase as the population ages, especially as the baby boom generation nears retirement. By 2030, one in five Americans will be over the age of 65. In many rural areas, the elderly already have reached this critical mass. Home care providers have traditionally been a key factor in helping people continue living in their own homes and not going into a nursing home. While this in-home, direct care services model has helped save counties and states money, it has also stretched limited financial resources.
Despite the growing demand and cost-effectiveness of in-home care, there is a serious shortage of home care workers. Low wages and lack of benefits provide a disincentive for people to enter into this profession. Turnover within the industry is very high—between 40 and 60 percent annually—and in a tight labor market, individuals can easily work in less stressful retail or service industries for similar wages.
Like many counties in the state of Wisconsin, Waushara County has struggled to find enough appropriate direct care providers for its elderly and disabled populations. Waushara is one of the state’s poorer counties and it is also rural, which forces home care workers to drive significant distances between clients. The county’s economic status, low wages for home care workers, lack of benefits, and rural nature made finding and keeping direct care providers a challenge. , Prior to the creation of Cooperative Care, Waushara County Department of Human Services (DHS) developed the In-Home Providers Program to serve the rural elderly and individuals with disabilities. For more than 20 years, DHS paired homemaker and personal care providers with low-income adults with disabilities and frail elderly residents who qualified for state-funded programs or Medicare. In this arrangement, care providers were not county employees, but rather considered domestic workers hired by the service recipient and paid by a third-party fiscal intermediary; that is, the client was the actual employer, but the county was the fiscal intermediary. The county was charged with handling the payroll and all other financial details, as well as scheduling worker home visits, providing employee background checks, and helping clients find in-home service providers.
This arrangement stretched limited public resources and left care providers without workers compensation and benefits. Compounding the situation, state and federal funding did not keep pace with cost-of-living expenses, resulting in lower-than-average wages. In Waushara County, this posed a potential liability because another rural Wisconsin county with a similar arrangement had recently been sued to cover medical costs incurred by a caregiver’s injury on the job. Despite the existence of a third-party fiscal intermediary, the Internal Revenue Service (IRS) has ruled that counties in this arrangement are the true employers and therefore liable for workers compensation and payroll reporting.
Lu Rowley, director of Waushara County’s DHS, recognized that the delivery of home care services, which allowed the low-income elderly and individuals with disabilities to live independently in their own homes, came at the expense of their low-income caregivers. For years, care providers had asked the county for higher wages and benefits, but tight budgets had prevented the director from accommodating their requests. The DHS director heard about a co-op approach to addressing the challenges faced by home care workers in south Bronx, New York—Cooperative Home Care Associates (CHCA)—that pioneered the first home care worker cooperative in the United States in 1985, and decided to apply for a state grant to allow Waushara County to explore utilizing the worker co-op model in a rural setting. The DHS director felt that Waushara County could form a similar worker-owned co-op. The county could sign a contract with the co-op to continue providing services to its low-income elderly and disabled residents. As a private company, the co-op could also serve counties beyond Waushara and care for private clients. By combining public and private revenue sources, it might be possible for a worker-owned co-op to offer much-needed benefits and perhaps higher wages.
Program Description
Founded in 2001, Cooperative Care is a worker-owned cooperative in rural Waushara County. It provides homemaker and certified nursing assistant care to the elderly and individuals with disabilities in their homes. Each worker-member owns a share of the cooperative and has one vote. Workers share the cooperative’s profits and sit on its board of directors, where they help direct company policy and strategic planning. Cooperative Care is the first such co-op in the Midwest and came together as a result of a unique collaboration among the federal, state, county, and private sectors. By sharing a vision and working together, social workers, administrators, and caregivers joined together to build an organization that has the potential to serve as a model for state counties and direct care workers. , , Cooperative Care started with an experienced workforce in desperate need of higher wages and basic benefits. Most of the worker-owner members are lower-income white women from a rural county with limited employment opportunities. All are ideologically committed to home care and have chosen to work in the field although they would earn slightly higher wages in institutional settings. A fair percentage of the providers are employed to care for their family members who would otherwise be institutionalized.
Cooperative Care offers the care providers comprising its membership a kind of organizational ownership that they had never enjoyed nor probably even imagined. It also provides them with member benefits that are not often found in this field of work (the lack of these benefits is one of the key reasons why there is such high turnover). Membership in Cooperative Care provides worker-owners with profit sharing, with each member’s share based on the number of hours worked during the past year. Workers receive differential pay for unscheduled work and are paid extra for filling in when a colleague misses a scheduled shift. Workers are reimbursed for time spent traveling between clients, which is especially important given the rural nature of the county. Workers are guaranteed a minimum of one hour’s pay for any assignments that last less than an hour. Benefits also include nine paid holidays a year, overtime pay, paid vacation time, and subsidized health insurance for those who work at least 30 hours a week, as well as a flexible benefit plan, liability insurance, and worker’s compensation.
For its home care clients, Cooperative Care provides a stable, committed, and professional workforce. For the county, it takes the scheduling and financial management of home care workers out of the county’s hands, freeing up case managers to better focus on providing the best social services possible.
Core Program Elements
Staffing
Cooperative Care has an executive director and a five-member worker-owner board of directors, who are voted into office by caregivers. Qualified worker-owner applicants must be certified home health aides or nursing assistants, and applicants must have state certification or be prepared to obtain it on their own. If membership is granted, the new worker-owner pays a one-time $50 membership fee for a share in the co-op.
Initially, Cooperative Care was able to tap into an existing core of providers, which required no recruiting efforts. It expanded on a 20-year-old program and thus was able to build upon strong support from both the county and the community. Cooperative Care utilized partnerships and collaborations on the county, state, and federal levels. On the county level, it utilized the expertise of the director of DHS, a nurse, social workers, and the county board. On the state level, Cooperative Care applied for grants and used the money to hire a local organizer and tap into resources to assist in research and support. It utilized the services of a local nonprofit to review the business plan and offer advice on the financial aspects of starting up and running a co-op. At the federal level, the U.S. Department of Agriculture (USDA) provided co-op technical assistance, co-op services advice, and a 2004 grant/loan fund to explore other co-ops. Cooperative Care used representatives from other co-ops to help set up the accounting system and get advice on dealing with conflict resolution. Finally, the University of Wisconsin Center for Cooperatives (UWCC) provided board members with training videos, conflict resolution, legal direction, and research.
Funding and Expenditures
Waushara County received a Community Options Program (COP) Community Links grant from the state of Wisconsin to explore the feasibility of forming a cooperative. COP is a state-funded program to provide assessments, case plans, and community services as an alternative to nursing home placements for all disability groups as well as the frail elderly. A $125,000 loan from the state bank provided the start-up money, 20 percent of which was spent on capital expenditures. The rest covered payroll until the cooperative achieved adequate cash flow. The cooperative is now funded entirely by client payments (it has a contract with the county) and its $50 membership fees.
Technical Assistance
To help facilitate the co-op development process, the director of Waushara County’s DHS brought in Margaret Bau, an expert on co-ops. In her job with the USDA Rural Development in Stevens Point, Wisconsin, Bau had advised and helped develop numerous rural cooperatives. She knew what was involved, how to develop a business plan, and how to structure the governing board. The organized plan that Bau and Dianne Harrington, a social worker and the other project coordinator, used to build Cooperative Care mirrored the 10-step model for building a co-op developed by the USDA. , , The following are the 10 steps:
1. Hold an exploratory meeting with others who have a similar interest and determine whether you have common needs and desire to address those needs as a group.
2. Select a steering committee to guide the group through the formation process.
3. Conduct a survey of potential members.
4. Analyze markets for products, supplies, and services.
5. Prepare a business plan.
6. Incorporate the business.
7. Adopt bylaws and select a board of directors.
8. Find investment funds—including member investment needed to carry out the business plan.
9. Hire management and employees, and acquire facilities and equipment.
10. Begin operations.
Lessons Learned and Accomplishments
The cooperative started with 61 caregivers in June 2001; as of December 2004, it had 74 members, with about 63 active. Of this group, all but two are certified nursing assistants. Two members are homemaker aides. The co-op has 82 active clients. Financially, Cooperative Care exceeded its fiscal projections. Year-end profits for 2001 exceeded $41,000. After prepaying part of the business loan and setting aside funds for capital reserves, cash patronage refunds were distributed at the first annual meeting. Checks averaged $440 but were as high as $1,000, based on the number of hours worked. At the end of the co-op’s second year of operation, net profits totaled more than $65,000, which was distributed to its members as retained equity and as cash payout.
Every year since its inception, worker-owners have received increases equivalent to hourly raises per hour worked. For example, in 2002 (for the year 2001), worker-owners received an increase of $1.39 per hour worked (14 percent for workers who earned $9.75 and 18 percent for workers who earned $7.75/hour). In 2004 (for the year 2003), worker-owners received an increase of $0.58 per hour worked (6 percent for workers who earned $9.75/hour and 7.4 percent for workers who earned $7.75/hour). Harvard’s John F. Kennedy School of Government named Waushara County and Cooperative Care as one of 99 semifinalists (out of a pool of 800 applicants) in the prestigious 2002 Innovations in American Government Awards. Wisconsin Rural Partners named Cooperative Care as Wisconsin’s Top Rural Development Initiative for 2003.
In 2002, a survey was developed to assess the impact of the formation of the cooperative on the satisfaction worker-members feel with their jobs. The survey was administered in the fall of 2002. Forty-three members (69 percent) completed surveys. Analysis of survey responses indicated that Cooperative Care members were generally and uniformly satisfied with most aspects of their jobs. The formation of the cooperative in June 2001 seems to have had an overall positive impact on the job satisfaction of current members. That impact is both tangible (increased wages and access to benefits) and intangible (an increased feeling of investment in the organization’s management and well-being and a greater sense of security and stability). In an effort to gauge consumer satisfaction with Cooperative Care’s providers, the co-op conducted a consumer survey in the summer of 2002. The survey asked consumers whether they were satisfied with eight different aspects of the care they received from Cooperative Care members. Forty people responded. The results indicated that consumer satisfaction with services performed during the co-op’s first year of operation was extremely high—an average of 96 percent of the respondents reported they were satisfied with each of the eight aspects of care. This suggests great satisfaction with all facets of provider service. A ninth question asked whether the consumer was satisfied, overall, with the services receive. Ninety-seven percent of respondents answered yes.
The development and building of the Cooperative Care workers co-op in Waushara County has been able to offer advantages for its workers, its consumers, and for the county of Waushara. Worker-owners experience personal empowerment and increased professional self-esteem; they receive professional benefits, stability, better pay, and job satisfaction; and they have a voice in their business and enjoy profit participation. Because of the low turnover, consumers are receiving consistent service from satisfied and conscientious workers. Cooperative Care offers Waushara County a stable and dependable provider source. It removes the operational burden from the county, as well as the potential of IRS liability. Finally, the co-op helps the families of providers. Time Banks/Time Dollars—Washington, D.C.
Background
Time Banks are based on the concept of people using their time as money. People build credits for time they put into voluntary activities in providing health or social care and other worthwhile work in their communities. Communities that are “cash-poor, time rich” are able to trade their time, providing each other with valuable services such as assistance for the elderly and individuals with disabilities, and family support. The Time Bank/Time Dollar idea was developed by Edgar Cahn in 1980 when, at the age of 46, he suffered a massive heart attack. Recuperating in the hospital and “feeling useless,” he dreamed up Time Dollars as a new currency to provide a solution to massive cuts in government spending on social welfare. Seven years later, at the London School of Economics, Cahn developed his theoretical explanation for why the currency should work. He came back to the United States and started putting service credits (not yet called Time Dollars) into operation. Cahn described the idea as working like a blood bank or babysitting club:
Help a neighbor and then, when you need it, a neighbor—most likely a different one—will help you. The system is based on equality: One hour of help means one Time Dollar, whether the task is grocery shopping or making out a tax return. Credits are kept in individual accounts in a “bank” on a personal computer. Credits and debits are tallied regularly. Some banks provide monthly balance statements, recording the flow of good deeds. ,
The result of this conceptualization represents a parallel economy using time as the medium of exchange and, by doing so, making connections between people and rebuilding a sense of trust. Time Banks create a reciprocal relationship between people and institutions, as well as between people and people, which ordinary volunteering finds harder to achieve. It allows almost anybody in society, including the elderly and individuals with disabilities, to give something back. In the Time Bank concept, the focus shifts from people’s problems to their abilities: Time Banks focus on people’s assets, what they can do. Time Dollars and Time Banking can serve as a tool for social change.
Each local Time Bank has a broker who facilitates time exchanges and keeps track of members’ time accounts. This method is of particular benefit to individuals with time to give but little income to get the services they need. For the elderly and individuals with disabilities, they are able to secure caring, shopping, sitting, and other support services they may need. They are also able to offer services themselves, which may be telephone or e-mail based or include other supportive/advocacy services on behalf of people with similar challenges. Time Banks are currently in operation worldwide.
Program Description
In the United States, Time Banks use a currency called Time Dollars. Time Dollars represent a special, tax-exempt form of money that anyone can earn by using time, energy, skills, and talents to help others. One hour of service provided to another human being or to the community earns one Time Dollar. A Time Dollar Exchange is formed whenever Time Dollars are earned and spent. Anyone can earn Time Dollars through membership in a Time Dollar Exchange. Time Dollar Exchanges use Time Dollars in two main ways. One way is through generalized helping and the other is through “specialized” activities that are targeted to a specific outcome. Time Dollar Exchanges offer a way to provide social networks that support the elderly and individuals with disabilities, making it possible for them to live independently in their own homes. , , ,
Time Dollars represent an alternative currency that can be used to recognize, validate, and reward the work of people seeking to build community. Because everyone earns Time Dollars at the same rate, regardless of what they are able to contribute, Time Dollars measure and reward the efforts people put in and send the message that every individual counts in ways that money simply cannot. At the same time, Time Dollars provide purchasing power to individuals whose contributions are often unrecognized in the market economy. For example, they are used to access food, clothing, computers, legal services, health care services, housing, and rides to the store. Members of Time Dollar organizations help each other in ways that family and neighbors have traditionally done.
Co-Production as an idea was also developed by Edgar Cahn in 1993, in which he worked out a theory to explain why and how Time Dollars could so profoundly change the dynamics of social welfare programs. The concept behind Co-Production is that all individuals, no matter how frail, fragile, damaged, even delinquent, can feel valued for contributions that they are able to make in their family. neighborhood, or community. Co-Production contains a different understanding of the role of clients and beneficiaries in that it regards all people as assets and as co-producers of outcomes. This nonmonetary, unmeasured sector of the economy also includes housework and efforts that go into caring for relatives. , ,
Cahn first used the term “Co-Production” to explain his particular approach to training lawyers. Students at the University of the District of Columbia School of Law are trained on the job by providing legal support for people and communities who need it but can’t normally afford it—and this is where Co-Production comes in, because the students do not provide their services for free. They charge out their time in Time Dollars. The recipients of legal advice pay their bills by earning Time Dollars themselves, either by passing on what they have learned to somebody else or by helping out in the community in some other way.
Co-Production includes four core values: assets, redefining work, reciprocity, and social capital. Assets as a core value recognize that the real wealth of a society is its people. Every human being can be a builder and a contributor. Redefining work as a core value recognizes that work must be redefined to include whatever it takes to rear healthy children, preserve families, make neighborhoods safe and vibrant, care for the frail and the vulnerable, attack injustice, and make democracy work. Reciprocity as a core value recognizes that the impetus to give back is universal. Wherever possible, we must replace all forms of one-way acts of helping with two-way transactions, so that “You need me” becomes “We need each other.” Finally, human beings require a social infrastructure as essential as roads, bridges, and utility lines. Social networks require ongoing investment of social capital generated by trust, reciprocity, and civic engagement.
When Time Dollars are earned and spent by individuals who are elderly or individuals with disabilities—who find they have no one to turn to except professional caregivers for the support and help they need—then every one of the four core values of Co-Production comes into play. All those who earn Time Dollars are viewed as assets—their contributions are redefined as work—the Time Dollar earned sets up an obligation on the recipient who paid out the Time Dollar to contribute, in turn, to someone else; and, in the process, new social networks of mutual help and mutual trust are formed. In return for the help they receive from professionals, clients use their own strengths to contribute to the organization’s mission, preferably by using their talents and skills to help others. Measuring and rewarding those contributions—simply by recognizing the effort, commitment, and worth—lifts the contribution to the status of work and, in doing so, can transform a top-down relationship between professionals and clients into an equal, reciprocal one.
In communities across the country, Time Dollars as a tool and Co-Production as an approach have enabled the people for whom the market economy has little or no use to contribute in ways that go far beyond volunteering.
Core Program Elements
Technical Assistance
The role of the Time Dollar USA Institute is to promote Time Dollars and Co-Production and to nurture and nourish the network of independent Time Dollar initiatives established by community groups, social service agencies, local governments, community action programs, and so on. , In this role, the institute facilitates links and exchanges of knowledge between new and well-established Time Dollar initiatives worldwide. It offers publications and provides how-to and learning materials, such as its Web site, workshops, and training. The institute makes available speakers for forums, conventions, and other public events. It developed Timekeeper software designed for use by Time Dollar Exchanges to keep accounts for Time Dollar members and to match providers to recipients. The software is free and downloadable from the Web site.
Lessons Learned and Accomplishments
Experience using Time Dollars and Co-Production , has shown that these concepts can save money. Research at Member to Member in Brooklyn, New York (see example below), has shown reductions in the costs of caring for customers under the social health maintenance organization (HMO) Elderplan. Local networks and support allow members to care for one another, resulting in the ability to remain in their own homes and out of nursing homes longer. Similar efficiency has been shown in a range of other Co-Production programs. Government-funded research in the United Kingdom has shown that rewarding individuals with Time Dollars attracts community involvement from some of the hardest-to-reach sections of the population, including people with disabilities. Programs that successfully incorporate Co-Production have been praised by participants and foundations alike for their ability to increase a sense of local trust and safety and cross racial divides. Research has shown over and over again that people who are active in their community are healthier, and Co-Production promotes active engagement in families, neighborhoods, and communities. An additional program benefit has been the sustained involvement over time of participants. Both in the United Kingdom and the United States, research on programs that use Time Dollars has shown that involvement grows the longer participants have been involved. At the New England Time Dollar Exchange Network (NETEN), member engagement (number of hours put in by participants) leaped by 150 percent in the fifth year of membership. (See more information about the New England Network below.)
Example of Time Dollars Building Co-Production: Elderplan, Brooklyn, New York
Elderplan, a social HMO in New York serving the elderly population of Brooklyn, Queens, and Staten Island, was one of the first organizations in the world to use Time Dollars as a method of delivering Co-Production in its Member to Member program. Since its inception in 1987, it has created long-term relationships that function as a supportive, extended family for its members, many of whom would otherwise suffer from isolation. The HMO’s elderly clients are given the option of signing up for the Member to Member Time Dollar Exchange. Enrollment in Member to Member means that clients can receive help from other members who earn Time Dollars for providing the help. By encouraging members to support other members, the HMO found that health benefits extended not just to those being supported, but also to those who were doing the helping. The result has been a marked increase in health, a decrease in the need for nursing home institutionalization, and a reduction in the social isolation and depression that is known to have serious health consequences. , , ,
Beyond the large-scale visibility and financial advantages, there are individual savings associated with Member to Member as well. Each day that a stay in the hospital can be shortened because of the Time Dollar program saves Elderplan $1,000. One avoided nursing home stay saves $35,000. The support, encouragement, and assistance that Member to Member participants provide to each other also reduces the costs incurred when medication isn’t taken regularly or in the right dose, and that same support can provide the early intervention needed to reduce costs and risk when chronic conditions worsen. Since Member to Member’s inception, Elderplan has come to rely on the program’s built-in monitoring system to manage those costs (as well as others) effectively. Recent research confirms that only 1 to 2 percent of customers leave Elderplan every year when they are involved in Member to Member, whereas the voluntary disenrollment rates for Elderplan’s competitors and other HMOs is normally between 10 and 15 percent. Research also found that interventions regarding medications and hospitalization were significantly lower for Time Dollar participants than for other members of Elderplan.
Contact information:
Elderplan Member to Member
745 64th Street
Brooklyn, NY 11220
Phone: 718-921-7909
Email: customerservice@elderplan.org
www.elderplan.org/programs/member_to_member.shtml
Example of a Time Dollar Network: New England Time Dollar Exchange Network
It was in late 1995 that Richard Rockefeller, the founder of NETEN (formally known as Maine Time Dollar Network), first heard Edgar Cahn speak about Time Dollars. Up to that point, most of Rockefeller’s philanthropy dollars had supported environmental issues. However, after hearing Cahn speak, he realized that we cannot expect people to take care of our environment if we are not first taking care of each other. Rockefeller felt compelled to bring the concept of Time Dollars to Maine and began to share his vision in 1996. In 1997, Maine hosted an International Time Dollar Congress in cooperation with Cahn, bringing together 40 Time Dollar programs from all over the world. ,
In 1998, the New England Time Dollars Exchange Network set its strategic direction to create a model Time Dollar exchange on Portland’s Munjoy Hill and to replicate that model throughout Maine. Between 1998 and 2003, NETEN became a leader in the International Time Dollar movement. NETEN created a successful Time Dollar exchange and began to replicate the model in several New England communities: Portland, Brunswick, Rockland, Lewiston, Mount Desert Island, and Millinocket, Maine; Manchester and North Conway, New Hampshire; and Lynn, Massachusetts. Its membership grew from 90 individuals in 1998, who exchanged 1,540 hours of services, to a statewide membership of just under 1,000, who exchanged 25,000 hours of services in 2003. During these five years, the members exchanged well over 50,000 hours of services, a market economy value of over $800,000 (using United Way’s average volunteer hourly rate of $16.07). NETEN hosted and mentored Time Dollar exchange groups in the United States from Massachusetts, New Hampshire, Oklahoma, Florida, California, Colorado, Indiana, and Pennsylvania; and around the world from England, Scotland, Singapore, Canada, Japan, and France.
NETEN’s current strategic direction is responding to and capitalizing on the growing interest in the Time Dollar concept. The plan extends NETENs reach from Maine to all of New England and addresses issues of capacity, sustainability, governance, and technology. The goals through 2008 include reframing its geographic scope to include all of New England; increasing the number of exchanges from 14 to 60; increasing the number of members participating in exchanges from 875 to 15,000; and increasing the number of hours exchanged from 18,000 to 300,000.
Contact information:
Auta Main, Director
New England Time Banks
144 Cumberland Avenue
Portland, ME 04101
Phone: 207-874-9868
Email: infomtdn@maine.rr.com
www.mtdn.org
A study conducted in 2004 summarizes information collected through 30-minute, face-to-face interviews with 12 local Time Banks at the Time Banks International Conference. The purpose of the interviews was to begin to gather qualitative data on what is happening at the local level so that best practices and lessons learned can be shared across the global network. Questions focused on organizational structure, partnerships, and sources of funds in order to look at how local Time Banks can make more efficient use of resources and enhance sustainability.
In terms of the sources of funds, members of local Time Banks in the United States all rely on federal, state, and city/county dollars. Federal sources include Americorps/VISTA, the Department of Housing and Urban Development (HUD), National Emergency Grant, and the Substance Abuse and Mental Health Services Administration. State sources included the Departments of Education, Mental Health, and Social Services; and city/county sources included public schools and county government. With the exception of the Americorps/VISTA program, government dollars typically go to a Time Bank that operates as part of a larger agency. With the exception of some of the Time Banks that are part of the network in New England, the local Time Banks are likely to have difficulty pursing a comprehensive family/individual donor strategy without additional support to develop the capacity to do so. All of the Time Banks interviewed have less than 2.75 full-time enrollees (FTEs), with most relying on the equivalent of one or less than one paid staff member. Most do not currently have the administrative systems, staffing, or specialized skills to build and manage a database, develop materials, and conduct the necessary relationship-building and follow-up.
Four out of the 10 local U.S. Time Banks interviewed report doing mini-fundraisers and hosting special events to raise money. The events are important for community building as members typically earn Time Dollars for organizing and staffing the fundraiser. Other costs are covered through in-kind member contributions and local sponsors. Agency-based Time Banks rely on their parent organization for overhead and other resources (e.g., event space, administrative support), which considerably reduces their need to raise cash for operating expenses other than personnel. Well-established agencies typically have visibility in the community, as well as partnerships and funding relationships that can be further developed to include the Time Bank. The challenge to being agency-based is often the need for a cultural shift—in terms of how staff and clients interact and relate to each other—and, as a result, the Time Banks model can be difficult to implement effectively. None of the U.S. Time Banks interviewed reported receiving funds from private foundations. This may reflect an organization’s stage of development, geographic area, or capacity for foundation research, relationship-building, and grant writing. Only one organization mentioned an effort to earn revenue by selling cookbooks with local and outdoor cooking recipes. This initiative is in the early stages and has not been tested.
In terms of the partnerships, members of local Time Banks in the United States report that they have been able to marshal resources and improve the variety of services offered to members through creative partnerships. Partnerships are a key component of sustainability, in terms of recruiting and retaining members, gaining visibility in the community to attract funders, and reducing operating expenses through exchanges. Partners will typically offer resources in kind; earn Time Dollars, and donate them back to the Time Bank; earn Time Dollars and spend them “hiring” members to cover staffing needs; or allow members to purchase services in Time Dollars that normally have a cash fee. In the latter case, members pay cash for any products that are needed to complete the service (e.g., food for catering, bike parts for a tune-up). Based on the interviews, the following types of partners are emerging:
• large organizations that rely on large numbers of volunteers, require minimal training, and have a standardized orientation process in place—examples include hospitals or local chapters of a national nonprofit (e.g., Red Cross);
• small businesses, nonprofits, or local government offices with temporary staffing or volunteer needs that require minimal training; and
• small businesses and nonprofit organizations that occasionally need skilled labor that is outside their area of expertise (e.g., repairs, landscaping).
In terms of products, local Time Banks in the United States report that members are exchanging Time Dollars for products, mainly by earning a specified amount of Time Dollars and redeeming them for donated items (e.g., computers). The obvious challenge with product Time Dollar exchanges is pricing. It is difficult to attach a time value to a product, and the local Time Banks are reluctant to take on the responsibility of setting prices. Exceptions that are occurring at some of the New England Time Banks include products that are exchanged in an aggregate amount. For example, members of a local New England Time Bank—Katahdin—may exchange one Time Dollar for one meal from the daily menu at the local hospital’s cafeteria. Members set their own prices, negotiating (independent of the Time Bank) what a particular product is worth in Time Dollars. For example, some members of a local Time Bank—Portland—have offered items for sale to other members in Time Dollars or in Time Dollars plus some amount of cash.
Time Bank Spotlight: Portland East End (Portland, Maine)
In addition to the summary of findings from the interviews with the local Time Banks listed above, the specific outcomes of the interview with the Portland East End Time Bank are highlighted below. The Portland East End Time Bank operates independently as a member of the New England Time Banks Network. It provides a good illustration of the strategies and resources utilized to run a successful local Time Bank.
Table 5.2. The Portland East End Time Bank
Start date (month/year) Pilot in 1996; up and running in 1998
Membership Open
Number of members (as of August 2004) 600+
Total FTEs 2.75
Americorps/VISTA 1 (ABLE = program funded by AARP; 2 seniors volunteer each work 20 hours/week)
Sources of funds Individual donors (80–90 percent); AARP; event sponsorship; local churches; and government (federal)
Member/community activities Monthly potlucks with themes; Day of Sharing (community service); and Holiday Bazaar. Fundraisers include cookie and lemonade sales; Tastes Around the World; and gift wrapping (paper is provided by the Portland Exchange and Time Dollar members do the wrapping for customers shopping at local businesses).
Examples of exchanges with local organizations that help the Time Bank to reduce its operating expenses
Advertising The local newspaper accepts 1 Time Dollar to run a small ad to promote events sponsored by the Time Bank. The newspaper spends its Time Dollars to hire members when extra clerical help is needed.
Examples of products and services available to members through partnerships with local businesses, schools, health care providers, and other nonprofits.
Theater tickets
(Access to the Arts) The theater earns Time Dollars by donating tickets that members can then buy with Time Dollars. The theater relies on members to help with ushering, mailings, filing, and hanging posters.
Adult education classes
(Portland Adult Education) Members can take classes using Time Dollars. In exchange, members provide tutoring to other students.
Physical and mental health services
(True North) The practice automatically receives 4 Time Dollars each month from the Time Bank. Members pay 2 Time Dollars per session for services. Members get a 10 percent discount on supplies.
Aikido classes Members can take classes for Time Dollars. In exchange, the business relies on members for Web site and brochure design.
Acupuncture On a limited basis, members can pay for services with Time Dollars (the provider limits the number of clients per month). In exchange, the business relies on members to provide catering services for open house events.
Advertising Members can post ads on the Time Banks Web site in exchange for 1 Time Dollar. A staff member scans all ads before posting.
Examples of individual member to member product exchanges
Car
Used furniture Members post items for sale and negotiate the price in Time Dollars with each other.
Homemade gifts At the annual Holiday Bazaar, members bring homemade goods that they buy/sell for Time Dollars.
Affordable Housing
Background
Throughout the United States, advances in research care, corresponding increases in frailty and cognitive impairments, and the Olmstead decision are forcing states to reconfigure their LTSS systems for elders and individuals. According to HUD’s latest Worst Case Housing Needs Report, people with disabilities make up at least 25 percent (estimated by HUD as 1.1 million to 1.4 million people) of the households with worst case housing needs in the United States. In the past 30 years, states have continued to evolve their approach to housing and related services for people with disabilities. In general, states have moved away from an institutional model of segregated facilities that ties together housing and service needs to a variety of smaller community-based living options. To varying degrees, these community living alternatives are intended to provide more choices and independence for the targeted populations. With the authorization by Congress in 1981 of the Medicaid home- and community-based services (HCBS) waiver, there have been new options for states to consider in supporting community integration. However, despite these increases, Medicaid payment policy does not cover housing or meal costs in a home- or community-based setting, although Medicaid does factor these costs into payments for nursing homes. In recent years, people with disabilities and individuals who are aging have been consistent in articulating essential principles to frame housing choices and related services to meet their needs. People with disabilities have pushed to separate housing choices that are affordable and accessible from the provision of LTSS.
According to a 2004 report by NCD, individuals with disabilities identified that their satisfaction with their housing situation is the primary factor for either remaining in or moving from their communities. Satisfaction—according to this target population—depends on two key factors: affordability and accessibility. Affordable and sustainable homeownership is a virtue that has been embraced by housing advocates and by the Bush Administration. Widely cited dividends resulting from homeownership include both individual and societal benefits. While a number of programs have extended ownership to people at increasingly lower income levels, roadblocks continue to exist, such as rapidly escalating housing costs—both rental and ownership, particularly in urban environments; low credit ratings among those aspiring to homeownership; predatory lending and the not-surprising default rate; unanticipated postpurchase expenses; escalating monthly expenses; and the absence of a network to support new homeowners as they confront these challenges. Compounding the homeownership challenges faced by individuals with low incomes is that, increasingly, affordable rental housing is being lost as HUD-insured mortgages and low-income housing tax credits expire, which threatens significant displacement and loss of affordable housing units as these properties face pressure for conversion to market-rate housing stock.
As the supply of affordable units grows increasingly tight, new sources of affordable housing must be found: affordable homeownership opportunities that combine support services as an option for individuals with disabilities and the elderly. To significantly increase homeownership rates of lower-income families in light of the rapidly escalating cost of housing, other alternative mechanisms need to be considered, such as multifamily structures with condominium and cooperative ownership. Multifamily homeownership, whether it is organized as a condominium or a cooperative, is often an entryway to homeownership, providing ownership at a substantially lower cost than single-family homes.
A housing cooperative is formed when people join together to own or control the building in which they live. They form a corporation and pay a monthly amount (maintenance fee) that covers operating expenses. Residents buy shares or a membership in the co-op, but the cooperative owns the building, land, and any common areas. Members pay a fixed amount each month that covers the mortgage, property taxes, insurance, administrative expenses, maintenance, and reserves. Costs are typically less than either rental or single-family housing in the same neighborhood. Cooperative housing represents a viable homeownership alternative that provides affordable, quality living space and a number of social benefits. Particularly in high-cost markets, cooperative housing is an effective means for households with little savings and limited income to achieve homeownership. Cooperatives provide residents with the stability and opportunity to keep more of their income and to improve their lives. , ,
Cooperative housing offers an affordable homeownership alternative that can lower, or at least stabilize, housing costs, especially if it is a Limited Equity Cooperative (LEC). A LEC is created when restrictions are placed on the resale of cooperative interests to make them affordable to multiple generations of purchasers. Unlike properties made affordable by programs such as the low-income housing tax credit (LIHTC) or Mitchell-Lama, which expire after a set period of time, LECs remain as sources of affordable homeownership in perpetuity. Like all kinds of affordable housing, subsidies are needed to make most affordable LEC projects feasible. Subsidies invested in cooperative housing result in homeownership that is affordable to the tenants in residence at the time of conversion. With the benefit of subsidy, cooperatives can be made available to households of very low income. For example, a family earning less than $20,000 per year, and with as little as $2,000 in savings, can qualify for ownership in a cooperative.
Because cooperatives are owned and managed by their residents, they are uniquely suited to offer alternatives to forcing seniors and individuals with disabilities into institutions. Homeownership in a group setting of people with similar needs and lifestyles gives those who may not be capable of living on their own many viable opportunities for independence and autonomy with mutual support. Co-ops can leverage the community to offer a customized level of care that suits the needs of their members. The residents decide what services are appropriate and then provide them on a volunteer basis or pay for them together, often getting services like personal aides and transportation at greatly reduced rates. Those who would normally find themselves in group homes or other institutional settings can achieve independence, along with a sense of community and responsibility, in a cooperative.
Across the nation, the reconfigurations relative to accessible and affordable housing initiatives that are under way at the state level, in general, include two primary efforts: (1) developing more state and local programs that help keep people who are disabled, frail, or cognitively impaired at home; and (2) community-based residential alternatives for people who are elderly and disabled who can no longer manage at home but do not need the 24-hour subacute care/skilled nursing environment provided in nursing homes. To make these institutional alternatives available to people with low-incomes, states use a variety of state and Medicaid-funded approaches to deliver home-based and residential services.
Program Description
This section examines two approaches to affordable housing that offer nontraditional choices to individuals with disabilities and the elderly with limited income. Together We Can offers affordable cooperative living with limited equity shares to keep prices well below market rate. No Place Like Home Communities (NPLHC) offers homeownership and subsidized rental options within a rehabilitated multifamily development that also includes a range of supportive services. Together We Can—New York City
Together We Can is a project of the NCB Development Corporation (NCBDC). Building on its successful history in cooperative housing finance, NCBDC launched Together We Can in late 2003 as a three-year project to build the capacity of community-based development organizations to engage in cooperative development, increase the number of public and private partners, and provide financing for the rehabilitation of rental properties and the conversion of these properties to affordable cooperative homeownership. Together We Can promotes cooperatives as an effective means of preserving affordable housing and creating homeownership opportunities for low-income families. Through this initiative, housing units are preserved as affordable to serve as vehicles for family stabilization and wealth creation for low-income families and important anchors for neighborhood revitalization. , ,
The Together We Can program promotes the use of the cooperative model as an effective means of preserving affordable housing and creating homeownership opportunities for very low-income families in New York City. In 2004, NCBDC began working in New York City, where public-private partnerships are already an effective tool for community development. Over the course of this project, the goals will be to more fully address the need for affordable housing in New York City by creating at least 1,600 units of affordable cooperative homeownership; to build the capacity of community-based development organizations to develop affordable housing; and to demonstrate the effectiveness of the cooperative model to enable low-income residents to become homeowners and maximize partnering and leveraging opportunities to preserve existing affordable housing. Together We Can will also increase personal wealth by creating homeownership and equity-building opportunities for low-income families.
Implementation of the program builds on existing partnerships with the Department of Housing Preservation and Development (HPD) of the City of New York, the Urban Homesteaders Assistance Board (UHAB), community-based development organizations (CBOs), the local HUD office, financial institutions, and private foundations. The Together We Can initiative has the potential to provide permanent, affordable homeownership for low-income families during the three years of the program. In addition, by building the capacity of CBOs, it also has the potential to build an infrastructure of capability and expertise—creating a pipeline of affordable cooperative housing development and multiplying the impact of this initiative. No Place Like Home Communities—Robbinsdale, Minnesota
NPLHC began in 1996 as a committee of families of people with disabilities and special education and social services professionals (organized by Intermediate School District 287) who were committed to helping young adults with disabilities achieve as much independence as possible. This group wanted to find a means of developing stable, long-term supportive housing for adults with disabilities so they could make full use of their abilities. The group evolved into an incorporated nonprofit organization in 2001, with 501(c)(3) designation received in 2002. NPLHC was named by the adults with disabilities who were going to live in the organization’s pilot project—Adair Apartments. , , ,
NPLHC is best known for its work in the area of supportive, affordable housing and homeownership. It is one of the first organizations in the country to approach permanent, accessible, affordable, supportive homeownership in a way that promotes economic independence and self-direction among people with disabilities by helping them achieve financial equity in their homes and emotional equity in their lives. In 2001, NPLHC acquired an apartment complex consisting of three buildings with 11 units each in Robbinsdale, Minnesota. NPLHC developed a financing model that dealt effectively with the limited public resources available for supportive affordable housing. The NPLHC model is based on the understanding that, while all of the residents with disabilities who will live in NPLHC housing are low-income, some of their families have adequate assets to buy an affordable unit with supportive services for their family member with a disability, while others require public subsidy even to rent a unit with services. NPLHC’s pilot site—Adair Apartments—contains 15 purchased condominium units and 15 rental units subsidized through a variety of public funding sources. Through this model, NPLHC developed 30 units of supportive housing for people with disabilities, with public subsidies covering the cost of 15 units, thus doubling the effectiveness of public funding for affordable housing.
In addition to affordable housing, NPLHC provides service coordination, crisis management, conflict resolution, and activities to promote social growth, self-advocacy, and independent living. These services, which are offered through NPLHC’s on-site Resource Center, ensure a critical safety net for adults with disabilities who are striving to become independent citizens. Participation in the Resource Center services and activities is completely voluntary for residents. In this model, NPLHC gives adults with disabilities the freedom to make their own decisions, while offering crucial supports to sustain them on their path to independence.
Core Program Elements
Funding and Expenditures
Together We Can
Together We Can works with foundations to fund and offer a loan fund for predevelopment expenses; a credit enhancement fund to provide a partial guarantee of the cooperative mortgages to attract investors and build understanding of and confidence in cooperative loans; and a capacity-building resource fund for CBOs.
No Place Like Home Communities
Asset-building activities currently sponsored by NPLHC include accessible, affordable, supportive homeownership and conversion of Section 8 renters to homeownership through innovative down payment and closing cost programs. The development of a financial literacy and first-time homebuyer education program known as “This Is Mine!” covers basic banking, credit, budgeting, saving, loans, fraud, and consumer rights, and helps to develop emotional equity through long-term relationships with highly trained volunteer mentors. Programs help individuals with disabilities, their families, and their employers understand and use favorable tax provisions and savings programs through Individual Development Accounts (IDAs) and 529 plans. Business planning, including securing microenterprise loans for home-based businesses owned and operated by individuals with disabilities, and solutions that more responsibly serve individuals with disabilities who are the beneficiaries of supplemental needs trusts.
Technical Assistance
Together We Can Program Financing and Technical Assistance Tools
Through the Together We Can initiative, NCBDC offers technical assistance to experienced nonprofit developers who want to offer affordable homeownership options. Together We Can works to increase affordable homeownership by building developers’ capacity to develop affordable cooperatives.
Lessons Learned and Accomplishments
A 2004 study of LECs in the United States and Canada found that LECs provide high-quality, safe, affordable housing for low-income families; contribute to stable, economically and ethnically diverse neighborhoods; can fulfill some economic and social needs more successfully than rental housing, particularly for groups that have special needs or where housing is especially expensive or distressed; offer stable housing costs in hot real estate markets and resistance to default in down markets, while requiring similar or lower subsidies than comparable rental housing; and can be an attractive housing alternative for a substantial portion of renters and some homeowners who spend more than 50 percent of their income on housing.
NCBDC and the Together We Can Program: Impact and Experience
In its 20 years of operation, NCBDC and its affiliate, National Cooperative Bank (NCB), have financed $500 million supporting the development of 30,000+ units of affordable cooperative and rental housing. The Together We Can initiative started off strong. It obtained $15.7 million for renovations and expenses related to co-op conversion for 425 units; it leveraged $19.5 million in public funds and $5 million more for 120 units; and it developed a new co-op training curriculum in the fall of 2004. In October 2004, it hosted an Affordable Cooperative Housing Roundtable with the Ford Foundation and Harvard Joint Center for Housing Studies in New York City to increase the visibility and understanding of co-ops in the affordable housing community. Together We Can won the HUD technical assistance contract in Metropolitan New York City and secured funding from Fannie Mae Foundation, Surdna, Wells Fargo Foundation, MSN Fund/Cooperative Development Foundation, and Bank of America Foundation.
No Place Like Home Communities: Impact and Experience
NPLHC is currently working with local community groups of adults with disabilities, their parents, social workers, educators, and community leaders to develop new projects in Washington, Ramsey, and suburban Hennepin County that will serve a minimum of 120 individuals with disabilities by the end of 2006. Ultimately, NPLHC hopes to serve as a recognizable national model for homeownership and asset development for people with disabilities.
In early 2004, NPLHC began working with NCBDC and its National Disability Institute to strategize NPLHC’s expansion across Minnesota and the Upper Midwest. NCBDC is exploring partnering further with NPLHC to develop more opportunities for accessible, affordable, supportive homeownership in the Twin Cities area and the Upper Midwest. NCBDC brings the creativity, financial expertise, mission orientation, and willingness to explore nontraditional forms of financing that NPLHC needs to develop a long-term version of its model for people with disabilities. NPLHC has been acknowledged as one of the first organizations in the country to approach permanent, accessible, affordable, supportive housing in a way that promotes economic independence and self-direction among people with disabilities by helping them achieve financial equity in their lives. Its unique financial model, utilizing both public and private resources, has garnered national attention from disability advocates, policymakers, and funding sources. Self-Directed Support Corporation—Baltimore, Maryland
Background
The conceptualization of Microboards came from David and Faye Wetherow in the Canadian province of Manitoba in 1984. The Wetherows formed the first Microboard around a young man leaving an institutional setting. A Microboard, which does not have a specific legal meaning, is formed when a small (micro) group of committed family and friends join together with a person who lives with challenges to create a nonprofit society (board). Together this small group of people addresses the person’s planning and support needs in an empowering and customized fashion. A Microboard comes out of the person-centered planning philosophy and is therefore created for the sole support of one individual. ,
At the time the Wetherows began developing the Microboard concept, there were only three ways that the Canadian government would finance community support services in Manitoba: (1) by licensing and funding a limited number of residential or day program “spaces” under the auspices of incorporated nonprofit societies or proprietary agencies; (2) by paying board and care rates to the proprietors of commercial residential facilities; and (3) by paying the equivalent of board and care rates to foster families for children and adult home provider rates for adults. In all three instances (except for foster care), the government was funding an agency to operate a certain number of program spaces or slots. This had several implications for the people served. If an individual who needed supports did not happen to fit an open “slot,” the person would be forced to wait until an agency developed and the government funded a new slot or a different kind of slot. Functionally, this showed up in the form of waiting lists. If a person was being served in an existing slot, and the type of service represented by that slot did not fit that person’s actual needs, there was very little opportunity to change the service configuration, because alternative slots were almost always full and had long waiting lists. Because there were such powerful disincentives to make changes, people who were able to make advances remained in mismatched service arrangements. The express premise of many services—which was that they would be “transitional” to other, less restrictive services—was inoperable because actual movement was limited or entirely absent. On the other hand, people who began experiencing increasing challenges or difficulties were forced to remain in services that could no longer meet their needs. Because of the congregate nature of most services, people were extensively disconnected from relationships and opportunities in the larger community. With rare exceptions, the places these individuals lived, worked, and played, and the days of their lives, were entirely defined by the agencies that supported them.
The intention of the Microboard was to bring the structures for providing supports more in line with person-centered and family-centered principles. The Microboard was designed to allow people to move (1) from agency funding to funding individual support services; (2) from agency-type governance structures to supports directly governed by the individuals being supported and their friends and family members; (3) from relatively inflexible service structures to supports that could adapt rapidly to changes in a person’s needs, interests, relationships, and environments; and (4) from lives defined by services to lives increasingly defined by companionship, connection, and contribution in the broader community.
The structure of the first Microboards began with a simple question: “What is the smallest unit of human organization that would be eligible to receive agency-level funding?” The answer was a three-person nonprofit corporation that could be organized to support as few as one named individual; hence, the “Microboard.” In 1989, the first large-scale application of Microboards was developed by the Vela Microboard Association in British Columbia, Canada, to develop the concept into a critical service option for people with developmental disabilities. Since its inception, Vela has helped set up over 170 Microboards in Canada.
Ensuring access to key health and support services was included as one of the lessons learned from the community initiatives for adults with disabilities that are described in the 2004 NCD report on livable communities. One of the priority action steps listed in the area of health care is
allowing money to follow the person to the most appropriate and preferred care setting to create a more equitable balance between institutional and community-based services, eliminate barriers to care, and provide consumers with choice over the location and type of services provided.
This is in concert with the Microboard concept.
Program Description
The Self-Directed Support Corporation (SDSC) model was established in October 2001 by the Inclusion Research Institute (IRI) as a project of national significance funded by the Administration on Developmental Disabilities. The SDSC model was created to adapt the concept of the Microboard to the legal, regulatory, and service delivery system for people with developmental disabilities in the United States. The U.S. adaptation was developed using existing service delivery components that are widely accepted in the disability community. From a service perspective, the SDSC model and similar small boards serve as independent incorporated nonprofit entities, established to negotiate, receive funds, organize, and manage supports around one person and/or the person’s family. In addition, the SDSC serves as a personal support circle. The state funds the SDSC directly. The SDSC is the employer of record and independently purchases the goods and services it needs, just as the members of an ordinary household would purchase the goods and services they need. The SDSC has complete freedom as to where and from whom it purchases goods and services. For example, if the SDSC wants to purchase payroll services rather than spending its time doing the payroll, it can purchase that service from a bank, a commercial payroll service, or a private bookkeeper, or it may join with other SDSCs to form a cooperative payroll service. If the SDSC doesn’t like the service it is receiving, it can change the source at will, just as an ordinary family may change lawyers or change banks. , ,
The SDSC approach is another option that provides an opportunity for public dollars to serve the person with a disability, while providing accountability to the Federal Government and state governments. An SDSC becomes the administrative body of the resources that the person with the disability requires. It differs from traditional support services because the board members (together, the provider) serve only one person. Because support services are provided to only one person, states may choose to be more flexible with regulations. However, an SDSC must follow the accounting requirements of both the Federal Government and the state government. It undergoes yearly audits to ensure accountability to both of these entities. It is subject to the same audits and reviews by state agencies as any other licensed service provider. It also must follow labor laws and nursing regulations. ,
The foundation of the SDSC model is six building blocks that interlock to form a foundation on which people with disabilities and their families can strive to build a life that offers real opportunities for security, dignity, and contribution. These building blocks are personal support; person-centered planning; responsive and flexible individual assistance; individual funding; transition of existing services; and community development. Supports are designed using the principles and tools of self-determination to meet the individual’s unique support needs. The components of the SDSC model have been derived from emerging best practices in self-determination described by Moseley and Nerney, , including the following:
• Flexible Individual Budgeting
The overall objective is to change state service delivery systems to actively support, encourage, and enable people to directly control the services they receive and the resources provided on their behalf.
• Individually Created Budgets
The person with a disability, with freely chosen family and friends, should develop the budget for the supports he or she is to receive.
• Open Budgeting Process
The amount of the budget should be set through a process that involves the individual in a discussion that identifies the person’s needs, the supports required to meet those needs, the presence of natural or alternative means that can be used to meet needs, and the costs of the support to be provided.
• Authority Over Personnel
The individual budget is designed to enable the person to supervise and direct the staff who provide support. Even if the person receiving services delegates responsibility to another organization (or individual) to be the employer of record, the budget development and implementation process recognizes the primary authority of the individual over personnel.
• Flexibility
Within approved amounts, budgets are designed to support the reasonable movement of dollars from line item to line item, as long as the essential supports are maintained.
• Administrative Structure
The overall administrative and funding structure is designed to support individual budgeting at two levels: (1) funding is allocated from the state to the fiscal intermediary in a manner and form that enables the organization to meet the financial and accounting demands that are necessary to sustain a large number of individual budgets for people receiving services; and (2) funding is allocated from the “provider” to the individual through a mechanism that easily pays for the variety of support alternatives that may be chosen.
• Personally Directed and Controlled Planning Process
The planning process must respect and reflect the central role of the individual in the determination of its content and scope. Recognizing that the authority for decision making rests with the consumer moves person-centered planning to the next step by validating the authority of the individual to choose the service provider, directly control how resources allocated on his or her behalf will be spent, supervise the staff who provide supports, and define how he or she will participate in the overall service delivery system.
• Independent Support Coordination
The function of support coordination, or brokerage, is separate from support provision. Ideally, support coordination is offered by an independent organization or individual that is able to work solely on behalf of the consumer without conflicting interests or responsibilities. In this context, the support coordinator functions to facilitate the transfer of power and control from the current system to the individual.
• Autonomous Fiscal Intermediary Services
In many cases, the fiscal intermediary is the private nonprofit organization established by and for the individual to hold the funds that have been provided, including financial services to people for functions typically performed by the business offices of agencies and corporations. These activities may include, among other things, Medicaid billing; check writing for all bills; administration of personnel issues, such as employer of record services, tax withholding, worker’s compensation, and health insurance; and the management of other taxes and benefits that might be appropriate, depending on the individual’s budget. The fiscal intermediary works for the individual and remains accountable for ensuring compliance with all federal and state laws.
Core Program Elements
Staffing
The board of directors of an SDSC is responsible for identifying what is important to the person receiving the supports. The board is not a paid entity, which keeps it free of conflict of interest. As with any board, it must keep records, manage the budget, and ensure that policies and procedures are followed.
Funding and Expenditures
The costs of establishing an SDSC are in setting up the agency. These vary from state to state, but the main cost is the incorporation process. This is done through the state entity that oversees the taxation and assessment process. Usually the cost is anywhere from $40 to about $150.
Usually funding for the supports that the person with the disability requires is obtained through the state’s Medicaid HCBS waiver. The HCBS waiver dollars come from both state and federal Medicaid dollars. The state is responsible for writing its own waivers and is responsible for matching the federal dollars. Each state’s match is different and, because the state writes its own waivers, each state may have different polices and regulations in place. However, the funding stream for the SDSC is the same as for any other provider agency.
Technical Assistance
Some states have created Microboard associations to assist families and other entities that wish to establish an SDSC or a small board. These associations provide development, support, and training. The Inclusion Research Institute (IRI) provides guidance, resources, and tools for creating an SDSC on its Web site.
Lessons Learned and Accomplishments
The IRI has been tracking the establishment of SDSCs and the Microboard approach. Currently, there are approximately 100 SDSCs (or some form of this model) across the United States. The numbers are growing rapidly, with about 75 more SDSCs in some phase of exploration or start-up. States that already have these small boards include Maryland, Colorado, Oregon, Missouri, Utah, Oklahoma, Virginia, Pennsylvania, Arizona, Minnesota, California, and Tennessee. States that are in the process of developing them include Nevada and New York.
SDSC Spotlight: Joshua’s House Incorporated
Jackie Golden, executive director of IRI, shared the story of her son, Joshua, and how the SDSC model made a difference in his life as well as his family’s life. Joshua’s House Incorporated (JHI) is the SDSC that was designed to deliver the supports Joshua needs to live successfully and be fully included in his community. JHI is a provider agency that provides custom-designed supports for Joshua. For Joshua and his family, JHI delivers his supports using the principles and tools of self-determination. ,
Joshua Golden is a survivor of traditional support networks. Since Joshua was eight years old, he has been receiving some type of public supports. The supports never fully matched Joshua’s needs and often hurt him both physically and mentally. The Goldens explored the SDSC model and wondered why they could not become the provider of Joshua’s supports. The Goldens understood the need for accountability regarding public funds, but they also knew that Joshua needed control over his supports, and they felt that the system was taking too long to catch up with his needs. Therefore, they believed that the SDSC model was the answer. Joshua has significant cognitive disabilities and requires full-time care. JHI incorporated and then applied for and became a licensed provider of supports for Joshua. JHI is the employer of record.
The Goldens formed a nonprofit, JHI, around Joshua and became the legal entity to receive Joshua’s allotted Medicaid dollars. Only individuals who care and share a vision for Joshua serve on the board of directors for JHI on a volunteer basis. The board, committed to Joshua, ensures that Joshua receives services that match his needs, desires, and lifestyle. He is in control, with the assistance of people who want him to be successful.
What does this mean for Joshua? It means that Joshua no longer has to deal with a system that does not value him as a person. He can select who comes into his life, as he is the director and decision maker of his support team, balanced with others who care about him.
What does this mean for Joshua’s family? Joshua’s sister and his parents serve on his board, along with Joshua. The board also has five other members. The key for the Goldens was to include people with a vision and commitment who are willing to spend time with Joshua. It also means a support network for Joshua’s family. No longer is it only his parents looking to secure Joshua’s future. Now his legal board of directors is working for him. For Joshua’s sister, she knows that she will have people to help her with Joshua when his parents are no longer around; it is a support team for her as well. While the SDSC has been a lot of work, it is also the most wonderful thing that has happened to the Golden family. Joshua truly can have a life that is his own, and his family can finally sleep at night, knowing that people who care about him are involved in his life. Pooled Trust—Bedford, New Hampshire
Background
Making financial arrangements for an individual with disabilities is an important part of planning for future needs. These arrangements help ensure that there will be some financial security when a parent or guardian can no longer provide help. Because of the various factors that need to be considered, making these arrangements can be quite complex. Arrangements include a family’s finances, the family member’s needs, and government benefits or other assets of the family member with a disability. Many individuals with disabilities receive means-tested benefits, such as Supplemental Security Income (SSI) and Medicaid. Means-tested benefits are benefits available to people with minimal income and minimal assets or resources. If a person’s income or assets/resources exceed the specified limit, he or she will not be eligible for the benefit. Often, for example, parents or others plan for the future financial security for their child with a disability by leaving the child an inheritance. If an individual receives SSI and/or Medicaid and has access to more than $2,000 in assets, he or she would lose eligibility for SSI and Medicaid.
One way to provide for the financial security of someone with a disability without jeopardizing government benefits is by using a trust. Trusts hold money or property that the grantor (the person who sets up the trust) leaves for the benefit of another person (the beneficiary). Unlike a gift or inheritance through a will, a trust usually contains carefully written instructions on when and how to use the trust’s assets. Trusts may be designed to distribute assets to one or more beneficiaries at certain times or under certain conditions. Some trusts make distributions to the beneficiary (or beneficiaries) over time. Others instruct the trustee to distribute only the trust’s earnings (from interest or investments) or the amount the trustee thinks the beneficiary needs. Some trusts may require the accumulation of all income for distribution at a future time. , Supplementary discretionary trusts are designed so that the principal (the amount put in the trust account) and its earnings (from interest or investments) supplement the beneficiary’s basic care and do not replace the public funds required to pay for this care. This kind of trust is good for the SSI and Medicaid recipient whose assets may not exceed a specific level. The trust grantor can carefully direct that the trust not pay for services covered by Medicaid or other benefits received as a result of the child’s disability. Instead, the trust would require the trustee to provide funds for certain items, services, or other expenses not covered by SSI and Medicaid. These types of trusts may also be set up for someone who is not on SSI and Medicaid.
Two federal laws support trusts for individuals with disabilities who receive Medicaid and SSI. The Omnibus Budget Reconciliation Act of 1993 (OBRA 93) is a federal law that affects how people with disabilities can have a trust and still qualify for Medicaid. The Foster Care Independence Act of 1999 is a federal law that affects how people with disabilities can have a trust and still qualify for SSI. Both laws allow many people with disabilities to place their own money into a trust and become (or remain) eligible for Medicaid and SSI.
Program Description
Pooled trust programs enable families or other caregivers, and in some cases individuals with disabilities, to establish relatively inexpensive and effective trust accounts that provide supplemental funds for the person with a disability while protecting him or her from losing important government benefits. In lieu of establishing an individual trust account, families set up a subaccount with a trust program. Pooled trust programs provide a convenient and economical way to have trust funds administered for people with disabilities that will supplement the benefits offered by entitlement programs. These programs normally use a discretionary irrevocable trust for supplemental needs. The assets placed in the trust by parents or others are allocated to a separate subaccount. The assets from all subaccounts are pooled to be invested and managed as one larger amount. Records are maintained of the amount of each person’s trust and the amount spent for that individual. The program divides the trust earnings among the individual subaccounts in shares equal to the amount that each subaccount has in the pooled amount.
Using a pooled trust program offers many advantages. Parents may not have or know someone who is willing to be a trustee. Trust programs usually have knowledgeable staff and volunteers who will serve as the trustee or manager of the trust. An individual trustee could die, move away or not fulfill the trustee role for some other reason. Trust programs offer continuity, as the program does not depend on just one individual. The trust document used by programs usually has been developed and reviewed by attorneys with expertise in this area of law. There is also the likelihood that publicly funded agencies have reviewed the trust document for compliance with their agency regulations. Banks and trust companies will not accept or manage a trust that is not funded at a threshold amount. Depending on the bank, the trust account may have to be several hundred thousand dollars or more. Parents who cannot afford to fund a large trust are often able to fund an adequate account in a pooled trust program. Pooled trust program staff or volunteers often have expertise and experience with people who have disabilities. The volunteer board of the program may also include legal and financial experts, family members of people with disabilities, and advocates. Trust programs usually work closely with banks and trust companies to maintain trust accounts and can tap the expertise of financial institutions. This relationship can help maintain good financial accountability without incurring high fees for the beneficiaries. One of the most significant advantages of using a pooled trust program is the expertise brought to managing the trust and making the required reports after it begins to make disbursements.
Core Program Elements
Staffing
A pooled trust program usually undertakes the daily management of the trust subaccounts. This includes handling requests for and expediting disbursements, maintaining each subaccount’s records, reporting to various agencies that might be affected by disbursements, preparing necessary reports (e.g., tax-related reports), and generally managing the program. Many trust program representatives also spend considerable time meeting with families about the program and assisting families and others with future planning. Pooled trust programs are set up as or administered by a nonprofit organization. They may be under the auspices of or closely connected to one or more disability-related organizations. Groups like state and local chapters of The Arc, Goodwill, the National Alliance for the Mentally Ill (NAMI), and others have been active in establishing pooled trust programs.
Some pooled trust programs include direct care coordination services for their beneficiaries or contract with care coordinators to provide services. Services vary depending on the agency and the services provided, but the care coordinator may visit the beneficiary, be present at meetings about the individual, advocate on the individual’s behalf, and provide related services as needed. Usually the costs of these services are covered by the individual’s trust funds and are charged hourly.
Funding and Expenditures
Pooled trust programs typically work closely with a bank, trust company, or other financial institution. Some pooled trust programs have banks serve as the trustee for the program’s funds, while other pooled trust programs are their own trustees and may use the bank as an investment manager or a co-trustee.
Pooled trust programs usually must charge fees for their services. However, compared with managing an individual trust, by pooling resources for investment and management, pooled trust programs can minimize costs, so that fees are usually reduced considerably.
Lessons Learned and Accomplishments
As one of its projects, the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, in conjunction with The Arc, conducted a study to identify, develop, and evaluate techniques that assist individuals with developmental disabilities and their families to plan for future needs, including future financial needs. This included research to determine the best practices in pooled trust programs. , , The project used a community-based model of aging-in-place for families of people with intellectual and developmental disabilities. The aims of the project were to increase understanding of quality practices in pooled trust programs; to aid families in using trust programs or alternatives; and to increase the family’s ability to develop effective future plans that address financial, legal, and service/support areas. The study had three research questions: What information do families and individuals need to make an informed choice about using pooled trust programs? How are pooled trust programs organized and what services do they offer? What are the experiences and levels of satisfaction of families who have used pooled trust programs? Three studies were conducted to answer the research questions.
The research conducted on best practices in pooled trust programs identified the following key findings and potential implications. Families’ needs for information on guardianship and alternatives, trusts, and planning for supports and services are well documented. However, early studies indicate that few families conduct financial planning for a family member with a disability. Heller and Factor , found that only 31 percent of families in their study contacted an attorney to initiate planning. The survey (study 3) conducted by this project heard primarily from families that were engaged in future planning. Seventy-four percent of the 223 respondents had a financial plan in place for their family member with a disability. Only 5 percent of these respondents used a pooled trust. Many of the 26 percent who had not developed a financial plan assumed that such planning for the relative with a disability was just for people who are wealthy. This supports the importance of educating families about options other than a trust established with a financial institution. The use of a pooled trust is one option; however, it is not universally available, as only 22 states are known to have pooled trusts operating, and not all of these are available to families statewide.
Pooled Trust Program Spotlight: Enhanced Life Options, Bedford, New Hampshire ,
The Enhanced Life Options Group, established in 1993, is a nonprofit organization that develops and carries out enhanced life option plans for people with disabilities. It provides information, consulting, advocacy, mentoring, and trust-related services for the disabilities community, including special needs trusts, supplemental needs trusts, pooled trusts, and trusts for independent living. There are nine directors, most of whom have a person with disabilities in their family. Board members also have professional skills, including law enforcement and banking. Board members have been active professionally in New Hampshire’s disability community for many years, working for nonprofit organizations such as NAMI New Hampshire and the Parent Training and Information Center. The Enhanced Life Options Group is a member of the New Hampshire Brain Injury Association, NAMI New Hampshire, The Arc national organization, Planned Lifetime Assistance Network (PLAN), and the National Guardianship Association.
The Enhanced Life Options Group offers two different types of pooling arrangements: (1) individually tailored trusts with pooling provisions; and (2) a master trust arrangement in which the family does not create the trust but joins a trust already created. In addition to providing trust services, the group participates with the New Hampshire Community Loan Fund in MoneyWorks in a program that makes Individual Development Accounts (IDAs) available. MoneyWorks IDAs are matched savings accounts designed to help eligible low-income people with disabilities accumulate resources for education, homeownership, and small business development in the Manchester and Portsmouth, New Hampshire, areas. The Enhanced Life Options Group has also participated with Project Dollars and Sense in a study of work incentives in the disabilities community, which was funded in part by the U.S. Social Security Administration, to provide Individual Career Account (ICA) demonstration projects in the Manchester and Keene, New Hampshire, areas. Project Dollars and Sense ICAs are microgrants designed to help remove work-related financial barriers for people with disabilities. Child Trust Fund—United Kingdom
Background
The British government believes that saving and asset ownership are an important complement to the three main pillars of its welfare strategy: work and skills, income, and public services. Regular savings provide individuals with a pool of financial assets for times of adversity, for planning for retirement, or to enhance long-term independence and opportunity. The government has implemented several programs to extend the benefits of saving and asset ownership through Individual Savings Accounts, Stakeholder Pensions, and the Pension Credit. But there is strong evidence to suggest that lower-income households are not saving enough for themselves, or their children, to enjoy the benefits and opportunities of asset ownership. ,
The British government looked at a number of ideas to ensure that the benefits of saving are more widely available. One possible vehicle that was explored for delivering the government’s objectives was the Child Trust Fund (CTF). A CTF would be a universal account, opened for all children at birth, with an endowment paid in by the government, based on the principle of progressive universalism—every baby would receive an endowment, but those in families on lower incomes would receive a larger lump sum. A CTF would meet the government’s objectives for saving and widening opportunity by ensuring that all young adults, regardless of their families’ circumstances, begin their adult lives with some level of assets. This would provide all children with the benefits of having savings (i.e., security, opportunity, long-term independence), with those children most in need receiving the most help from the government.
Program Description
In April 2003, Gordon Brown, MP, chancellor of the Exchequer, announced the CTF for all children born on and since September 1, 2002. The CTF, which became operational in April 2005, represents a long-term savings and investment account opened for each child, into which the government will make an initial payment of either £250 or £500 (approximately $465 or $930, respectively), depending on the family’s gross income. Children from lower-income families—those below the Child Tax Credit (CTC) limit—will receive an additional £250, because the government believes that children from higher-income families are more likely to have their funds supplemented by parents and grandparents. This additional amount will be added to the account once the CTF award for that year is confirmed. About a third of the children will be eligible to receive the additional contribution. This ensures that the CTF is both a universal and progressive policy—helping to extend opportunity to all while targeting support at those most in need. , , , ,
The saving ethic across the United Kingdom as a whole is low, and it is hoped that the launch of the CTF will reverse this trend. The goal is to ensure that every child, no matter what family circumstances it is born into, will have a nest egg for the future, which each child will be encouraged to take an active interest in. The main aim for the CTF is to educate parents and children about the importance of saving from an early age, to provide for the future, to establish a saving habit, and to aid in the financial education of young people. To date, nowhere else in the world has a government committed its resources to such a program. It represents a public-private partnership in that it relies on private sector financial institutions as the vehicle to achieve universal asset-building goals.
Entitlement to a CTF account will automatically be linked with entitlement to child benefit, which reaches virtually all children living in the United Kingdom. The notice of the child benefit award will automatically trigger issuance of the CTF voucher. In addition, the government is putting in place special arrangements to ensure that CTF accounts will be opened for children looked after by local authorities or under equivalent arrangements in Scotland, who do not qualify for child benefits. From early 2005, the government will begin to send out the vouchers to the parent/guardian to open a CTF plan from an approved provider. Before the dissemination of the vouchers, the government will be contacting parents and guardians to confirm their child’s eligibility.
CTF accounts are owned by the child and in the child’s name. Annual statements will be sent to the child throughout the 18 years the CTF account is open. The CTF account will not affect any CTC benefits the family receives, and neither the parent/guardian nor the child will pay tax on income and gains in the account. However, there may be fees associated with the provider’s administration charges. Private contributions may be made to the account up to £1,200 (approximately $2,200) per year after taxes, and account holders may transfer their accounts among providers at any time and as many times as desired at no charge. The plan will mature on the child’s 18th birthday, at which time the child will receive the assets; there will be no restrictions on what the money can be spent on. The funds are not accessible until age 18. Financial institutions are not required by law to offer CTF accounts. However, those that wish to—including banks, brokers, investment managers, and life insurers—must be approved as accepted providers by the Financial Services Authority (FSA, the independent industry regulator). The government wants to ensure the development of a competitive CTF market that provides simple, good value, and accessible CTF accounts with adequate incentives to save.
While children are eligible who were born beginning September 1, 2002, the CTF did not become operational until April 2005. Therefore, if a child was born between September 1, 2002, and April 4, 2005, he or she will receive slightly more, because the child was eligible prior to the issuance of the voucher. The CTF vouchers issued to children before the operational date in 2005 will have a higher value than the standard voucher to recognize this fact. Each child will receive a second, as yet undetermined, payment on his or her seventh birthday. As well as helping the accounts to grow, these age-related payments will be a useful reminder of the CTF account. As with the additional contribution, a flat rate payment will be distributed to all children, and an additional payment will be made to children in lower-income families. In the exceptional cases in which a parent or guardian chooses not to claim the child benefit, the child will not be eligible for a CTF account.
Core Program Elements
Technical Assistance
The design of the CTF—including an additional government contribution to the account at the age of seven, annual statements issued by providers to all children, teaching and learning resources for use in the classroom, and a dedicated Web site—will help children engage with their accounts and make the best use of the assets at account maturity. The government also wants parents to actively engage with the CTF and will provide resources to ensure that parents are helped to make choices about their child’s CTF, including an information pack to be issued alongside the CTF voucher, and will work with the FSA to ensure that consumer information activity includes the CTF. The detailed information packet for parents will include such information as a full explanation of the CTF rules; details of all CTF providers; an explanation of the different types of accounts available; a step-by-step guide to opening an account; and sources for further information and guidance. In addition, the packet will include illustrations showing the impact of a range of investment choices and contribution levels on account growth and the risks associated with these choices.
The CTF, by linking with the school curriculum, will build on financial education by ensuring that every young person has access to a financial asset, increasing the relevance of financial education for all and helping young people understand the advantages of saving. To support learning through the CTF and related topics in the classroom, the government will commission the development of a range of CTF teaching and learning resources. The resources will help children improve their financial capability and will be clearly linked in different parts of the curriculum. These resources will be designed to meet the child’s needs at different ages, beginning with an introduction to the basic concepts of saving and moving toward guidance on possible uses of financial assets, including continuing to save, as the young person’s CTF nears maturity. The government will promote and make available these resources to all schools.
Lessons Learned and Accomplishments
It is too early to highlight any lessons learned and accomplishments; however, enhanced functional literacy is being documented as a byproduct for both children and families as a result of implementation of the CTF. As a universal benefit, the CTF provides opportunities to devise new teaching and learning materials, using the fund as a tangible example of a savings/investment product. , The CTF provides an opportunity to promote financial awareness among children and young adults and to give them a real-life savings vehicle that can be associated with financial education. Schools will be able to use the CTF as an example in their financial education work, and this in turn could encourage children’s and young people’s interest in their accounts. According to the FSA, there are various ways in which children and their families could be encouraged to be involved with their CTFs. Saving could be encouraged at school. Many schools operate school banks (in some cases this is a credit union). Teenagers ages 15–17 who have a maturing CTF could be encouraged to make decisions about its use and be given the necessary understanding to make informed decisions. This could happen as part of existing work done in schools and colleges; for example, as part of work-related learning, as part of career education, when considering options for higher education (and how that might be funded), or when considering training or self-employment options. Various government initiatives dealing with young people can incorporate the CTF concept into their programs.
While there are no known outcomes, it is a good practice, and the U.S. government could benefit from the approach the British government is taking through this public-private partnership of universal asset building. In the United States, a similar strategy with restricted use of funds for children determined to have a certain level of need for future LTSS might be evaluated as an alternative (supplemental or complementary) financing strategy to current college 529 plans or individual retirement accounts. A 2004 Aspen Institute Brief evaluates the approach the British government has taken and discusses some issues and implications for a similar child account policy for the United States. According to the brief, while the CTF represents a significant advance in savings structures, government-provided matching funds through direct payment or refundable tax credits would be an even more effective incentive to encourage families in lower-income brackets to save. A drawback to the CTF is that its incentives to save do not expand on existing tax-based incentives to the full extent possible. A policy created in the United States could be designed specifically to stimulate asset acquisition, limiting the use of funds to investment in higher education or a small business, a down payment on a house, or a retirement account. In addition to stimulating asset acquisition, such restrictions would also be consistent with existing U.S. asset-building and long-term saving policies. Further, according to the brief, a hybrid system in which accounts are offered by a government-sponsored entity and by private financial institutions would maximize consumer protection and the quality of product offerings. Access to a government-sponsored account would give families the choice of a basic account with low costs and good service. The private sector financial institutions’ product design expertise and marketing creativity would raise the accounts’ visibility, thereby stimulating greater participation and higher account balances. An additional benefit of the hybrid system is that the existence of quality low-cost government accounts would stimulate competition among private sector providers. Part II
Conclusion
LTSS reform requires leadership, creativity, capital, and risk-taking. The waters of reform are rough and costly. It is clear that states cannot take on the burden of reform without substantial federal involvement. There is, however, a growing recognition that a fundamental shift in values is occurring as states move services and supports to the community and home and out of the institutions. Individuals with disabilities are being provided with more choices to live independently. The shift to a system that is not anchored by a medical model and an institutional bias requires fresh, creative thinking that reanalyzes the use of public and private resources.
The examples provided of realignment of service and financial relationships at an individual and community level recognize the importance of consumer choice and direction. The two examples of cooperative organizational structures that provide places to live that are affordable and that improve support workers’ level of compensation and job satisfaction offer viable options to respond to the current and growing imbalance of demand versus system capacity to respond to need. The three examples related to management of assets—pooled trusts, support corporations, and CTFs—raise important questions about public versus private responsibility to create and manage a social safety net for individuals deemed in greatest need of long-term support.
These experiments in progress challenge society and policymakers to offer a new role as resource managers to individuals and families who traditionally have been the consumers of social services. The CTF offers the boldest experiment in redefining public responsibility to all children and families regardless of where they live, their economic status, and immediate needs. It also raises new questions about traditional policymaking that has defined and calculated need based on economic status. Access to supports and services as an entitlement has historically been means tested for individuals under the age of 65. The CTF offers a new approach to the social contract between a nation and its citizens that places enhanced value on asset development as a foundation for future public policy development.
The Time Bank exchange of value offers further opportunities to rethink the value and purpose of a community to support all its members with an exchange of resources to respond to defined needs. Proponents of the Time Bank exchange are quick to point out that it cannot replace government intervention. However, it can be a cost-effective approach to augment and complement a social safety net that responds to needs in a way that recognizes disability as part of the human experience to be embraced by community inclusion.
What is most refreshing about all the identified examples of local and individual strategies is that they do not begin with the assumption that the existing framework of government resources is the essential building block for the delivery of LTSS. These strategies do not start with Medicaid or Social Security to build and design a community-based system. However, each example of community and family development strategies embraces three fundamental principles to help design the ship that may offer safe passage in the future:
1. Consumer choice and direction is an essential design principle that must rebalance risk and responsibilities between government and the target audience.
2. Communities should be supported by government through tax and social policy to support formal and informal caregiving, recognizing the value of cooperative principles of ownership to improve affordability and worker and consumer satisfaction.
3. Asset development is a lifespan challenge that should be a fundamental principle of all future policymaking, which should reward all children and families for saving for the future to respond to planned and unexpected needs as a result of disability as a natural part of the human experience.
Although each of these selected individual and local strategies has promising early evidence of success, as a group they represent works in progress that deserve the increased attention of policymakers to expand replication options and continue the collection of data to further test results over a longer period of time. The challenge for future policymakers is to identify ways to embrace these concepts and nontraditional system approaches in the design of the future system.
Chapter 6
Recommendations for Incremental and
Clean Slate Reform
Table of Contents:
Chapter 6
Page
Part I
Introduction to Incremental Reform 493
Part II
Moving Forward—Improving the Current LTSS Ship 494
Part III
The New Millennium LTSS Model 508
Part IV
Ameriwell—The New Millennium LTSS Model 511
Part I
Introduction to Incremental Reform
The recommendations offered are anchored by the original set of assumptions that emphasizes the value of consumer choice and direction, the importance of access and sustainability both programmatically and financially, the preference for home- and community-based long-term services and supports (LTSS), and the necessity of federal leadership, financial investment, and oversight. The original assumptions have been sustained and correlated by the research and supported by experts across the diverse spectrum of stakeholders: government, policy analysts, service providers, people with disabilities, and families.
The recommendations have been divided into two parts. The first set of recommendations represents a comprehensive set of strategies that would move the ship of LTSS forward at a slower pace.
The second set of recommendations would establish a new millennium policy with multiple financing streams to sustain LTSS for Americans with disabilities across the age span, regardless of geography, level of personal resources, and family support. The second set of recommendations represents the construction of a new ship to navigate the rough waters expected.
Both sets of recommendations recognize that there is no single or simple policy solution to the challenges documented in this report. Both sets of recommendations identify specific agencies and committees within the executive and legislative branches of the Federal Government that would have the lead role to move forward with implementation and, where appropriate, additional research. Although there may be disagreements about which path will increase the probability of the LTSS ship’s safe passage through troubled waters, there is strong, overwhelming support for focusing on these issues now rather than later. With the perfect storm ahead, Congress and the executive branch cannot afford to keep missing the boat. LTSS comprehensive policy development will define us as a nation. It is imperative that the United States retool its programmatic and financial infrastructure to protect and promote individual dignity and independence within the context of supportive families and communities to meet its growing economic and demographic challenges. Part II
Moving Forward—Improving the Current LTSS Ship
1. Increase policymaker knowledge and understanding of public and private costs and benefits of LTSS for people with disabilities under age 65 and their families.
Implementation Lead:
• Office of Assistant Secretary for Planning and Evaluation, Department of Health and Human Services (HHS)
• Congressional Budget Office (CBO)
• General Accountability Office (GAO)
The lack of data presenting a complete and accurate picture of the costs for LTSS for families with children with disabilities and adults with disabilities was a key finding by NCD researchers. Despite multiple studies by CBO and other federally sponsored research centers on the costs of long-term care (LTC) for seniors, the younger population with disabilities under age 65 has not been a priority. The traditional definition of LTC identified acute care needs as well as nonmedical services and supports for seniors. Today’s definition of LTC has changed to reflect the ongoing growth and integration of disability into mainstream culture. LTSS for people 65 years and younger is about many nonmedical services and supports, such as personal assistance, assistive technology, financial management, housing, transportation, and nutrition. How a person is assisted in compensating for loss of activities of daily living (ADLs) will define their future earnings potential and economic independence.
Cost studies are needed that evaluate, in a systematic and comprehensive manner, the extra costs of raising a child with a disability and continued support of the person as an adult. Such studies should examine differences of support needs reflected by cost for individuals with a range of functional limitations in family settings and other home, community-based, and more restrictive skilled nursing environments. Other differences to be analyzed should relate to diversity of race, ethnic background, gender, disability, and geography. Protocols should examine the costs to consumers and families as well as the costs to government (with specific government funders identified and quantified) and other institutional payers as part of the evaluation of different program models. Administrative versus direct service costs should be scrutinized. As recommended by the NCD report “Consumer-Directed Health Care: How Well Does It Work?” (October 2004), well-defined guidelines are needed to accurately capture the role of families and individuals in paying for LTSS to avoid the risk of cost-shifting to families as supports and services move from institutional to community-based settings.
More needs to be learned about the cost benefits of consumer-directed services and support plans and improved coordination and collaboration in the delivery of services through Aging and Disability Resource Centers (ADRCs).
An additional area of focus is to increase understanding of the cost benefits of LTSS insurance products as they are brought to market and customized to respond to the needs of individuals with disabilities under age 65. Finally, the CBO should be tasked with projecting the costs of LTSS for individuals with disabilities under age 65 over the next 30 years based on a consumer-directed service delivery model and alternative options for public and shared private responsibility for costs without current impoverishment rules. CBO should also investigate the impact on public costs of making available comprehensive community-based LTSS, with particular attention to possible reduced demand and costs for nursing home placements.
All three agencies should be charged with preliminary reports ready for the next term of Congress in January 2006 and complete reports by the end of the year.
2. Design and implement a multifaceted action plan of monitoring and oversight of state activities to meet their Americans with Disabilities Act (ADA) obligations as a result of the Olmstead Supreme Court decision.
Implementation Lead:
• Office for Civil Rights, Department of Health and Human Services
• Civil Rights Division, Department of Justice
The Olmstead Supreme Court decision in 1999 provides important legal support for states’ current efforts to rebalance their LTSS systems toward home- and community-based settings. The Administration, through an Executive Order and grant activities, has taken seriously the Court’s decision and mandated a state planning process to improve and expand community-based choices for people with disabilities. Over $200 million has been awarded by the Centers for Medicare and Medicaid Services (CMS) to states on a competitive basis to promote system changes. Despite these efforts, litigation continues to expand in class action suits. In more than 25 states, individuals with disabilities have been frustrated with the pace of change and the slow movement of funding away from nursing homes and institutional settings to communities.
The Office for Civil Rights at HHS and the Justice Department have the responsibility to monitor and oversee Olmstead state plan implementation. As both agencies have done on numerous occasions in the past related to ADA, there is an opportunity to be proactive and design and implement an action plan that evaluates individual state efforts to meet the Olmstead community imperative mandate. Each state should be rebalancing its financing, reducing the number of individuals with disabilities residing in nursing homes, diverting people from entering nursing homes, and putting in place the infrastructure for expanded home- and community-based supports for individuals with disabilities. The action plan should require site visits in all states within the next 24 months; consumers and other interested stakeholders should be provided with notice of the state visit and offered an opportunity to meet with federal officials. State status reports on current efforts should be made public and available for comment. Federal monitoring reports would also be made public. Annually, both agencies would submit to Congress a report on their monitoring and oversight activities. Both the House and Senate Judiciary Committees should hold annual oversight hearings to monitor federal and state activities and hear from people with disabilities and their families.
3. Decouple eligibility for home- and community-based services (HCBS) under an HCBS waiver from a determination of nursing home eligibility.
Implementation Lead:
• Senate Finance Committee
• House Energy and Commerce Committee
• Centers for Medicare and Medicaid Services
There are multiple suggestions from the Expert Panel and other key stakeholders as to how to amend current public policy to remove the institutional bias in the Medicaid program. All amendments would give Medicaid beneficiaries greater choice in how financial assistance is provided to cover a range of LTSS. The clear majority of stakeholders recognize the overwhelming consumer preference for HCBS. Two complementary options deserve immediate attention from Congress and bipartisan support. The first option is to shift the HCBS program from its current waiver status to a state plan requirement. Eligibility would be delinked from nursing home eligibility, and states would receive an increased federal match under their state cost-sharing agreements for services provided in this category as part of their Medicaid reimbursement for authorized expenditures. CMS would set guidelines for a functional assessment process and the minimum threshold of services to be covered, including personal assistance services.
The second, complementary, option would be that federal funding follows the person from a nursing home to a community setting as part of a person-centered plan and self-directed budget. The Money Follows the Person (MFP) option would continue for a three-year period to help support successful community transition. Both options are currently part of legislative proposals before Congress. MFP and the Medicaid Community Attendant Services and Supports Act (MiCASSA) deserve to be the focus of hearings before the end of the year.
4. Increase support for families and significant others in their role as informal and unpaid caregivers for individuals with disabilities over and under the age of 65.
Implementation Lead:
• Office on Disability, Department of Health and Human Services
• Administration on Aging, Department of Health and Human Services
• House Ways and Means Committee
• Senate Finance Committee
Eligibility for LTSS, and the scope and intensity of covered services, varies significantly from state to state. States have considerable discretion in determining whom their Medicaid programs will cover. Despite state variability in criteria for Medicaid eligibility and scope of benefits, in all states, individuals with disabilities are dependent on informal caregivers, including parents, family members, and significant others. The estimated benefit of informal caregiving exceeds $200 billion annually. Services should be designed to support, not supplant, the role of the family and actions of informal caregivers. Increased support for informal caregiving could be achieved through implementation of a complementary set of recommendations. Address the lack of portability from state to state for Medicaid LTSS.
• Enact the Lifespan Respite Care Act to award grants or cooperative agreements to develop statewide lifespan respite care programs. Lifespan respite care is a coordinated system of accessible community-based respite care services for family caregivers, regardless of the individual’s age, race, ethnicity, or special need.
• Establish a National Resource Center on Lifespan Respite Care to maintain a national database and provide training, technical assistance, and information.
• Amend the tax code to allow an additional standard deduction for any family who spends in excess of $2,000 for the care of a family member with a disability. The deduction would be allowed for costs related to personal assistance services, technology-related assistance, transportation, respite care, medication, and adult day programs or workplace supports. Expenses would be disqualified if they are reimbursed by insurance or a public resource.
• Authorize a study, coordinated by the Departments of Labor and HHS, to determine the costs to the economy—in terms of education, employment, income forgone, and transfer payments—as a result of the demands of family caregiving for parents, family members, and significant others.
• Pilot test and evaluate the use of Time Banks as a nontraditional strategy at the community level to enhance opportunity and consumer satisfaction with informal caregiving.
• Increase by 20 percent the funding level for the National Family Caregiver Support Program to expand respite care options and improve training and support for caregivers. Require improved coordination of program activities with other similar program efforts directed to support caregivers for individuals with disabilities under age 65.
5. Improve the supply, retention, and performance of direct support workers to meet increasing demand.
Implementation Lead:
• U.S. House of Representatives, Committee on Education and the Workforce
• Senate Committee on Health, Education, Labor, and Pensions
• Departments of Labor, Health and Human Services, and Agriculture
As demand grows for in-home and community-based support workers, and as informal caregivers become less available, public policy must pay increasing attention to critical challenges that relate to direct care/support employment. NCD researchers documented numerous state efforts to raise wages, improve quality through education and training, and change the nature of the relationship between consumer and caregiver.
The supply, retention, and performance of direct support workers can be enhanced by implementation of the following set of recommendations:
• As part of the Olmstead guidance, CMS should issue an advisory letter to state Medicaid directors directing corrective action to achieve parity of compensation across the environments where direct support workers are employed. Home- and community-based workers must earn wages that are comparable to those of workers who perform similar duties in other care settings.
• Continue to fund demonstration projects by CMS to allow states to test innovative strategies to improve the recruitment, supply, retention, and performance of direct support workers.
• Authorize funding for demonstration projects between the Departments of Labor and HHS that promote collaboration between community colleges and disability-related organizations to develop a high-quality set of competencies to be taught in a new support worker certificate program that expands supplies of quality workers to meet market demand in home- and community-based settings.
• Pilot test the establishment of additional worker cooperatives with the assistance of the Departments of Agriculture, Labor, and HHS, to explore improved consumer-caretaker relationships.
6. Mandate coordination and collaboration among federal agencies to align public policy and transform infrastructure to be responsive to consumer needs and preferences for a comprehensive system of LTSS.
Implementation Lead:
• Centers for Medicare and Medicaid Services
• Department of Housing and Urban Development (HUD)
• Senate Finance Committee
• Senate Committee on Banking, Housing, and Urban Affairs
• House Subcommittee on Health and Environment
• Department of Transportation
• Social Security Administration
• House Committee on Education and Workforce
Although Medicaid and Medicare dominate the landscape of funding authorities for LTC and LTSS, NCD researchers documented the complexity and fragmentation of multiple systems with different rules of eligibility and lack of information on access to and availability of resources. The fragmentation and coordination challenges carry over from the executive branch to the legislative branch, where different committees in the Senate have different controlling authority than committees in the House of Representatives. Although Program Assessment Rating Tool (PART) reviews by the Office of Management and Budget (OMB) are incorporating common performance measures across agencies and programs, there is no focus on cross-department and agency collaboration. The nature of LTSS requires more than a dozen programs and agencies to improve the coordination of resource at the community level, where it will benefit the end-user. No single recommendation can respond to this significant challenge. NCD recommends that the appropriate agencies and congressional committees implement the following set of recommendations:
• Hold congressional hearings to evaluate possible options for improvement of collaboration across multiple departments to provide access to information and supports and services to meet the long-term needs of people with disabilities under and over age 65.
• Require HUD and HHS to document current efforts and future plans to improve and expand the availability of affordable accessible housing coordinated with services and supports when needed. Establish an Interagency Council on Meeting the Housing and Service Needs of Seniors and Persons with Disabilities. The council’s role would be as follows: “(4) To improve coordination among the housing and service-related programs and services of federal agencies for persons with disabilities and seniors and to make recommendations about needed changes with an emphasis on (a) maximizing the impact of existing programs and services; (b) reducing or eliminating areas of overlap and duplication in the provision and accessibility of such programs and services; and (c) making access to programs and services easier for persons with disabilities and seniors around the country; (5) To increase the efficiency and effectiveness of existing housing and service related programs and services which serve the target populations; (6) To establish an ongoing system of coordination among an within such agencies or organizations so that the housing and service need are met in a more efficient manner. MEMBERSHIP: The council shall be composed of the following: (1) the Secretary of Housing and Urban Development or a designee of the Secretary; (2) the Secretary of Health and Human Services or a designee of the Secretary; (3) the Secretary of Agriculture or a designee of the Secretary; (4) the Secretary of Transportation or a designee of the Secretary; (5) the Secretary of Labor or a designee of the Secretary; (6) the Secretary of Veterans Affairs or a designee of the Secretary; (7) the Secretary of the Treasury or a designee of the Secretary; (8) the Commissioner of the Social Security Administration or a designee of the Commissioner; (9) the Administrator of the Centers for Medicare and Medicaid Services or a designee of the Administrator; (10) the Administrator of the Administration on Aging or a designee of the Administrator; (11) the head (or designee) of any other federal agency as the council considers appropriate; (12) state and local representatives knowledgeable about the needs of the target population. CHAIRPERSON: The chairperson of the Council shall alternate between the Secretary of Housing and Urban Development and the Secretary of Health and Human Services on an annual basis. The Council shall prepare an annual status report on activities to the President and Congress with policy recommendations.”
• Add to the PART performance criteria indicators that will evaluate documented outcomes from intra-agency and cross-agency collaboration to meet the LTSS needs of people with disabilities. Consider possible financial incentives for agencies that document valued outcomes from LTSS system collaboration. Report annually to Congress on individual agency performance in this area.
• Issue a new Executive Order to charge CMS to chair a time-limited workgroup (six months) on LTSS that includes representation by HUD, HHS, Social Security Administration (SSA), Education, Labor, Justice, Transportation, Treasury, and Agriculture to identify policy barriers and facilitators to an improved comprehensive coordinated system of LTSS for people with disabilities under and over age 65 that maximizes interagency collaboration, promotes consumer direction, and increases consumer choice and access to affordable supports and services in home- and community-based settings. The final report to the President would include recommendations for policy and practice changes and any appropriate program consolidation.
7. Improve and hold states accountable for rebalancing their system to support LTSS.
Implementation Lead:
• Centers for Medicare and Medicaid Services
• Congressional Budget Office
• General Accountability Office
Selected states are having success with a global budgeting approach to move their LTSS systems from an institutional bias to be anchored by home- and community-based services and supports. CMS Real Choice Systems Change Grants have accelerated the pace of change in a number of states that recognize the changing expectations of the consumer population to have more control and independence with access to appropriate supports. The consumer population in each state wants more information on the progress their state is making to rebalance the system and expand their choices in the most independent setting possible.
• Develop a template, in consultation with states, to be used to evaluate and measure the states’ current expenditures for LTSS in institutional versus home- and community-based settings. Such a template would be developed jointly by CMS and CBO to allow for consistent comparative benchmarking from year to year within a state and among states. CMS would require an annual updated report that would identify expenditures by cost category in terms of services/supports, funding streams, and populations. States would be expected to achieve an agreed-upon level of improvement annually, related to negotiated indicators. A system of rewards would be considered that would allow up to a 5 percent increase in federal matching funds under the Medicaid program for certain agreed-upon LTSS expenditures. CMS would make available on its Web site the comparative analysis of state expenditures, according to agreed-upon benchmarks.
8. Increase understanding of the possible relationship between an LTSS insurance product and publicly financed LTSS.
Implementation Lead:
• Centers for Medicare and Medicaid Services
• Assistant Secretary for Planning and Evaluation, Department of Health and Human Services
Congressional interest remains high to understand and explore further the possible relationship between the current market for LTC insurance products and a reduced dependence on Medicaid and Medicare for long-term support needs. With the growing cost of Medicaid and Medicare documented by NCD researchers, there is growing interest in forging a new level of partnership with the insurance industry that explores both the expansion of product options and the possible cost savings to the public system. For people with disabilities under age 65, no such insurance product yet exists and little is known about the risk factors in terms of potential utilization by the target population and how to achieve affordable pricing. Even with adoption of several of the other major recommendations proposed in this report, it is unlikely that a revised Medicaid program will ever meet the needs of all persons who seek LTSS.
• Conduct a feasibility study of possible new insurance products and options regarding their relationship to the Medicaid program to evaluate possible strategies to partner an LTSS insurance product with supplementary Medicaid coverage for people with disabilities under age 65. Consider price, benefit coverage, caps in coverage, and eligibility for Medicaid LTSS, as well as project market demand and needed incentives to share risk among stakeholders: the government, the consumer, and the insurance industry. The possible collaboration would include APSE at HHS, CMS, and a private insurer.
• Pilot test such a product or products to evaluate cost benefits to all critical stakeholders. Such a pilot must recognize that LTSS must be individualized to accommodate the needs and desires of the individuals receiving assistance and that the services and supports must reflect consumer preference for noninstitutional settings. Such an insurance product must achieve several objectives: be affordable, be flexible, respond to consumer needs and preferences, and be sustainable over time with federal oversight.
9. Improve consumer understanding, knowledge, and skills to develop a person-centered plan and self-direct an individual budget.
Implementation Lead:
• Centers for Medicare and Medicaid Services
• Administration on Aging
• Administration on Developmental Disabilities
• Social Security Administration
The Cash and Counseling Demonstrations and the Independence Plus waivers have produced early positive findings of increased consumer satisfaction with the self-direction of individual budgets, the selection of support providers, and increased choice in the development of person-centered plans. Individuals with disabilities and their families should be given the opportunity to plan, obtain, control, and sustain the services that are best for them in preferred home- and community-based settings. For people with disabilities who have been given few choices in the past regarding services, supports, and service delivery options, consumer self-direction requires information, education, and training to build the critical skills needed to make informed decisions.
Access to information about service options, streamlined procedures for determining eligibility for various public benefits, and new infrastructure will need to be developed to assist with programmatic and financial management.
The following set of recommendations recognizes the principles of individual self-direction and responsibility for prudent and effective management of public resources as critical to the development of the LTSS system of the future.
• Continue to provide competitive grants that establish Aging and Disability Resource Centers (ADRCs) in all 50 states that provide one-stop access to information and individualized advice on long-term support options, as well as streamlined eligibility determinations for all publicly funded programs. With joint funding from CMS and the Administration on Aging, the ADRCs should provide education and training to individuals with disabilities on informed decision making in the development of person-centered plans and the management of individual budgets.
• Establish, with funding from CMS, a National Resource Center on Consumer Self-Direction that identifies and disseminates best practice information on person-centered plan development, self-directed management of individual budgets, and examples of multiple funders braiding funds within an individual budget to achieve common negotiated performance objectives. The center should also provide assistance to states on methodology for development of individual budgets and strategic alliance options with financial institutions for the effective and efficient management of resources that have been allocated on an individualized basis.
• Require states as part of their HCBS waiver implementation to provide education and training to eligible Medicaid beneficiaries on effective and meaningful participation in person-centered planning, management of individual budgets, and negotiation with service and support providers.
• Establish a cross-agency workgroup including CMS, the Administration on Aging, SSA, the Administration on Developmental Disabilities, HUD, the Office of Special Education and Rehabilitative Services at the Department of Education, and the Department of Labor to accelerate options for states to bundle or braid public funds within a self-directed individual budget with streamlined and accelerated eligibility procedures. Findings and recommendations shall be made to the President and Congress within 90 days, with the report to be made public for review and comment.
10. Continue to educate people with disabilities, their families, and other critical stakeholders about LTSS challenges in public policy and practice and document further consumer needs, costs, and preferences for a comprehensive, accessible, and affordable system.
Implementation Lead:
• National Disability Institute/NCB Development Corporation
• A major insurance company
• A major financial service company
• National disability organizations
• American Association of Retired Persons
• National Council on Disability
This report documents the current crisis and the impending perfect storm. It is a complex and confusing picture, not easy to grasp and even more difficult to change as we move forward. NCD must continue to put the spotlight on this critical set of challenges that, in the next 20 years, may touch over half the population of our country. For people with unmet LTSS needs today, NCD must continue the public education process through outreach activities and direct discussion with the disability community and policymakers.
• Conduct a series of audio conferences and a national summit of key leaders and stakeholders to continue to document the findings and build consensus on possible policy and practical solutions.
The focus of the discussion must be based on a core set of principles identified by the Expert Panel reflecting the following:
• Individual authority—the ability to manage, direct, and control the nature and delivery of supports received.
• Personal choice—the freedom to choose the services and the provider that best meet the person’s needs.
• Individual support—the resources to enable people with disabilities, as well as families and seniors, to make informed decisions regarding the services received.
• Productivity—the focus of LTSS must be on giving people the assistance they need to live full and productive lives.
• Participation—people receiving support need to be involved at all levels of the decision-making process, from policy to implementation.
Part III
The New Millennium LTSS Model
Year 2049
The United States successfully built a health care and LTSS ship through an array of public-private funding mechanisms. Many of the demographic predictions made by economists and policymakers at the beginning of the 21st century did come true. There were fewer workers and more retirees and fewer federal resources to cover promised benefits. It became evident by the middle of the 2010s that reform was necessary in Social Security, Medicare, Medicaid, civil service pensions, and military pensions. The United States had committed $25 trillion in future benefits that were unfunded. Japan, Italy, and Spain experienced population declines that affected everyone’s international trade markets and increased global workforce shortages.
Business leaders in the United States began to see their profit margins eroded with the rising costs of health care and were concerned that their ability to compete globally would decline unless the problem was solved. Although disability advocates and researchers and policymakers had tried to put the issue of LTSS and health care on the national agenda for decades, it was the business community that actually positioned it for reform.
Today, in 2049, 50 percent of Americans are nonwhite and a majority are low-income workers. The overall health of Americans is better and many people are living longer, including people with lifelong disabilities such as Down syndrome, cerebral palsy, and intellectual impairments. Life expectancy has increased and, although there are different configurations of the “family unit,” families continue to play an important role in the care and housing of their members—young and old. The nursing home facility of the mid- and late 20th century is all but obsolete, and housing with variations in services is mostly community based and provided by family members and a new cadre of professionals. Although the movement in the late 20th century was toward consumer-directed care in the community, the challenge of finding affordable housing for many retired Americans and Americans with disabilities, including appropriate and affordable services and supports, remained a large barrier. Many Americans had not saved or insured adequately against the costs of aging, retirement, or disability. In 2005, LTSS public policy depended on many variables falling into place. Even if an individual or family met the income and disability eligibility criteria for LTSS, many states could not afford to offer the necessary services and supports because of budget deficits. Because Medicaid programs were state-specific, many people with disabilities could not move their LTSS benefit from one state to another. The country was not prepared to address the health and service and support needs of its fast-growing demographics, which included more working individuals under the age of 65 with disabilities and the doubling of its senior population. Many middle-income seniors had nowhere to turn but to Medicaid, and state and federal spending fast became unsustainable.
Disability rates did decline for the senior population, as predicted in 2005. Even for those 85 and older, modern medicine and technology began to eradicate diseases associated with aging, such as Alzheimer’s, visual and hearing impairments, and other physical conditions that once limited mobility. Scientific breakthroughs for diabetes, obesity, and mental illness helped to decrease the incidence of chronic disabilities in the under-65 population as well. The incidence of lifelong disabilities, such as cerebral palsy and Down syndrome, were unchanged, but new insurance products became available and through shared risk pools were helpful in defraying the costs of living with a lifelong disability. Individuals with disabilities were no longer expected to live in impoverishment to receive assistance for the additional costs associated with compensating for limitations in ADLs. Unemployment for people with disabilities declined as increased services and supports were provided. The workplace became more accessible for people with disabilities as technology increased its accessibility and employers became adept at providing the necessary accommodations.
Today, in 2049, health care policy is universal and includes a basic menu of services focused primarily on prenatal care, prevention services, routine checkups, prescription drug management, and nonmedical services and supports. Healthy environments and healthy behaviors are considered the centerpiece for a healthy country. All Americans now have access to an array of basic health services that are mandatory, similar to the requirement that all drivers had automobile insurance during the second half of the 20th century. The disproportionate costs for health services for the uninsured declined as the new system focused on quality outcomes and cost management and universal coverage. However, boutique health care continued to grow and is now a popular alternative for many Americans with private resources; it includes personalized health services from spa membership to monthly plastic surgery treatments to home visits by a physician.
HCBS replaced the institutional nursing home model of the mid-20th century and regional centers provided neighborhood triage and mobile units to reduce the costs of transportation and manage costs and outcomes. Housing for seniors and people with disabilities emerged that linked independent living with choice and new options. Group homes were converted into cooperatives, and individuals with disabilities became shareowners in an array of alternative housing models that promoted equity. Unemployment for people with disabilities declined and, for the first time in a century, working Americans included many individuals with disabilities.
The movement toward health care reform, including LTSS, began in 2005 as a small group of researchers and policymakers unveiled a new model for the LTSS ship “AmeriWell,” which provided a new roadmap for innovative funding and product development for people with disabilities. Part IV
AmeriWell—The New Millennium LTSS Model
Implementation Lead:
• Center for Medicaid Services
• Congressional Committee on LTSS
• Wall Street investment firms
• Major health insurance companies
• National Academy of Science
• AmeriWell is a prefunded, mandatory LTSS system that provides all Americans of any age with coverage from birth based on criteria of risk and functioning and not category of disability. AmeriWell delinks LTSS from Medicaid and Medicare, creating its own governing agency, regulations, oversight, and congressional committee.
• The AmeriWell Center is the third division of CMS and is required to produce an annual report to the President and Congress that provides an update on fiscal and programmatic status.
• AmeriWell Part A begins with a individual/family account established at birth for all Americans. AmeriWell Part A provides LTSS for all Americans of all ages based on criteria of risk and functioning and not ability to pay. AmeriWell Part A is funded through individual/family contributions made to individual/family-assigned accounts beginning at birth with premiums paid by wage earners on a sliding scale and assessment of functioning and risk. A basic LTSS menu provides services and supports most desired and utilized by people with disabilities, whether working or retired.
• AmeriWell Part B will provide LTSS and health care and prescription drugs for individuals who are both Medicare and Medicaid eligible because of poverty and disability status.
• Every American has an AmeriWell Account Plan (AWAP) that is an actuarially agreed-upon amount adjusted for inflation over time based on the cost projections of a specific lifelong disability, such as cerebral palsy, Down syndrome, or a physical impairment. In addition, an individual is assessed as to risk and functioning over time for any benefit adjustment. For example, a person with cerebral palsy who needs help with two ADLs but is functioning well on his or her own is given the necessary services and supports for work. Assuming that this person is not considered at immediate risk or need of other services, he or she is assigned a capped amount based on this data.
• Each child is given an AmeriWell account at birth, funded by the parent wage earner. If a child is born with a significant disability, the parental account that has accrued over time will be opened and used for the child. If a child has no parents, AmeriWell Part B will kick in and provide a defined amount of services and support based on the individual’s AWAP.
• The AmeriWell premiums are set aside in an AmeriWell Trust Fund that has public-private oversight and provides a financial pool to cover LTSS.
• Individuals and families also have the option to create private AmeriWell Freedom Accounts that are tax deductible up to $10,000 per year. These accounts are similar to the college 529 plans, and each state has the option of teaming up with private investment firms to offer choices regarding investment options, flexible and guaranteed rate of return, and/or annuities.
• AmeriWell Part B raises revenue through a sales commission levied on daily stock transactions to create a fund (Penny Pool) to defray the disproportionate share of care provided to uninsured/underinsured, dual-eligible persons (those who receive both Medicare and Medicaid). The Penny Pool helps states meet the needs of impoverished individuals with disabilities and the aging.
• AmeriWell allows Medicaid to stay true to its original mission to serve as a safety net for low-income mothers, children, and people under age 65 and provides a buy-in option for individuals who are working with a disability, who are working but do not have insurance on the job, or who lose coverage because of a lost job. All aging and disability populations (30% of the Medicaid caseload in 2005) have been moved into AmeriWell.
• AmeriWellPlus is a program for Social Security Disability Insurance beneficiaries and dependent recipients who previously fell under Medicare. This account provides LTSS, health insurance, and prescription drugs, and its funding is shared with Medicare and the Penny Pool.
• AmeriWell is a national program and provides LTSS portability from one state to another.
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