September 2009

FY 2001 to FY 2004 Systems Change Grants: Summary Final Report

Janet O'Keeffe, Dr.P.H., R.N.
Mary F. Harahan, M.A.
Christine O'Keeffe, B.A.
Wayne Anderson, Ph.D.

Prepared for

Cathy Cope
Melissa Hulbert
Centers for Medicare & Medicaid Services
7500 Security Boulevard, Mail Stop S2-14-26
Baltimore, MD 21244-1850

Submitted by

Janet O'Keeffe, Project Director
RTI International
Health, Social, and Economics Research
Research Triangle Park, NC 27709

RTI Project Number 0209359.004.004

RTI International is a trade name of Research Triangle Institute

Introduction

People of all ages with disabilities or chronic illnesses strongly prefer home and community-based services (HCBS) to institutional care.¹ However, although spending for home and community-based services has increased dramatically over the past decade, a major institutional bias remains, and nursing homes still dominate Medicaid funding for long-term care in many states.² Creating a more balanced service delivery system is a major goal for the Centers for Medicare & Medicaid Services (CMS) and for most states.

In fiscal year (FY) 2001, Congress began funding the Real Choice Systems Change Grants for Community Living program (hereafter, Systems Change grants) to help states change their long-term care systems to rely less on institutional services and to increase access to home and community-based services. The overarching purpose of the Grants Program was to help states develop the necessary regulatory, administrative, program, and funding infrastructure to enable individuals of all ages who have a disability or long-term illness to (1) live in the most integrated community setting of their choice; (2) exercise meaningful choice and control over their living environment, services, and service providers; and (3) obtain high-quality services in a manner consistent with their preferences.

Between FY 2001 and FY 2004, CMS awarded 226 grants in 17 categories, as shown in Tables 1A, 1B, and 1C. These grants were initially awarded for 3 years. However, almost all Grantees received 1-year or longer no-cost extensions and completed their grants between September 30, 2005, and September 30, 2008.

The Systems Change grant program was primarily intended to promote incremental change; thus, with the exception of the Real Choice and Comprehensive Reform grants, individual awards were relatively modest—averaging between $300,000 and $800,000 over a 3- to 4-year period. Grants were typically directed at one or more aspects of a state's HCBS system rather than promoting more comprehensive reform.³ (See Appendix A for a list of all grants awarded, by state with the amount of the grant award.)

From the federal perspective, the infrastructure development strategy has several advantages: it is relatively low cost and it is voluntary, encouraging states to change their systems without a federal mandate or an expensive new entitlement to services. At the same time it sends a clear signal to the states that the federal government is committed to a paradigm shift in the long-term care delivery system: from a reliance on institutions to a reliance on home and community-based services as the first choice for meeting the needs of persons of all ages with disabilities or chronic illnesses.

From the states' perspective, the strategy is advantageous because it makes them the drivers of change, allowing significant flexibility to accommodate different political environments and starting points. Additionally, from the start of the program, states have been able to apply for more than one type of grant each year as well as in each grant cycle. A few states that had a clear vision of the reforms they wanted to achieve, and that were positioned to take advantage of the opportunity the grants afforded, were able to use multiple grants over the four grant cycles to further state reform goals.

Table 1A. Number of Grants by Grant Type: Research and Demonstration Grants
Grant	2001	2002	2003	2004
Community-Integrated Personal Assistance Services and Supports (CPASS)	10	8	8	–
Comprehensive Systems Reform (CSR)	–	–	–	2
Independence Plus (IP)	–	–	12	–
Integrating Long-Term Supports with Affordable Housing (Housing)	–	–	–	8
Mental Health Systems Transformation (MHST)	–	–	–	12
Money Follows the Person (MFP)	–	–	9	–
Nursing Facility Transition–Independent Living Partnership (NFT-ILP)	5	5	–	–
Nursing Facility Transition–State Program (NFT-SP)	12	11	–	–
Quality Assurance and Quality Improvement Systems in Home and Community-Based Services (QA/QI)	–	–	19	9
Portals from Early and Periodic Screening, Diagnosis, and Treatment Programs to Adult Supports (EPSDT)	–	–	–	2
Real Choice	25	25	–	–
Rebalancing Initiative (Rebalancing)	–	–	–	7
Total of Grants by Grant Type	52	49	48	40

Table 1B. Number of Grants by Grant Type: Feasibility Study and Development Grants
Grant	2001	2002	2003	2004
Community-Based Treatment Alternatives for Children (CTAC)	–	–	6	–
Living with Independence, Freedom, and Equality Accounts Feasibility and Demonstration (LIFE)	–	–	–	2
Respite for Adults (RFA)	–	–	4	–
Respite for Children (RFC)	–	–	6	–
Total of Grants by Grant Type	0	0	16	2

Table 1C. Number of Grants by Grant Type: Technical Assistance Grants
Grant	2001	2002	2003	2004
Family to Family Health Care Information and Education Centers (FTF)	–	–	9	10

The Systems Change grant program is predicated on the belief that infrastructure development is crucial to improving access to and the quality of home and community-based services. States often need to develop complex policies and procedures to implement HCBS waivers, consumer-directed services, nursing facility transition programs, and quality measurement initiatives. For example, when implementing a consumer direction program with individual budgets, states have to design counseling and financial management services as well as develop a methodology for determining the budget amount. But state funding for developing and implementing new policies, procedures, and programs is generally not available.

The program also recognizes that reform and improvement of states' long-term care systems can occur incrementally over time as iterative improvements are implemented. Although a later series of grants—Systems Transformation grants funded in 2005 and 2006—promoted a more comprehensive systems change strategy, the intent of the series of grants awarded between 2001 and 2004 was chiefly to jumpstart new initiatives, provide funding to supplement existing initiatives to increase their scope, and provide the impetus for states that have historically lagged in developing strong HCBS systems.

Purpose of Report

The purpose of this report is fourfold: (1) to present a brief overview of the results of the Systems Change grants awarded from FY 2001 through FY 2004, (2) to describe the remaining challenges to community living that Grantees identified, (3) to provide Grantees' recommendations for actions needed at the state and federal level to further improve their long-term care systems, and (4) to discuss the key lessons learned regarding factors that are needed to improve states' long-term care systems.

The report synthesizes and summarizes the six final reports prepared as part of RTI's formative evaluation of the initiatives of the FY 2001 through FY 2004 Systems Change Grantees. For detailed information about each Grantee's initiatives, see Appendix B for a listing and links to each of the six final reports, as well as all other reports about the Grantees that RTI prepared between FY 2001 and FY 2009.

Organization of Report

Section I presents an overview of the long-term care systems improvements that states made during the grant period, which were due at least in part to grant activities. The majority of these improvements occurred in the following areas: increased access to and the availability of home and community-based services; developed, expanded, or improved consumer-directed services options; increased the availability of nursing facility transition programs; and improved HCBS quality management systems.

Section II describes Grantees' views of the most significant barriers to supporting individuals with disabilities in the community and improving states' long-term care systems.

Section III presents Grantees' key recommendations for addressing continuing challenges to serving individuals with disabilities in the community and for improving long-term care systems.

Section IV presents a summary of the lessons Grantees learned about how to successfully implement and sustain initiatives to improve states' long-term care systems.

Section V presents our conclusions about the FY 2001 through FY 2004 Systems Change grants and provides strategies for CMS to consider when awarding future grants.

I. Enduring Improvements

With few exceptions, Grantees reported a wide range of enduring improvements sustained beyond the four grant cycles that directly or indirectly helped to create a better and/or more balanced service delivery system. Tables 2, 3, 4, and 5 summarize these improvements in the four major categories that were CMS priorities: access to existing home and community-based services, new or expanded home and community-based services, personal assistance services (PAS) and consumer-directed services, and quality assurance and quality improvement. In addition, although not a CMS priority, some states used their grants to address the widespread lack of affordable, accessible housing, which constitutes a major barrier to community living. Table 6 summarizes the improvements achieved by a number of Grantees in the areas of funding, infrastructure, and policy.

Because many states received more than one grant, they were able to implement several enduring systems changes, and the tables present the number of states that made changes over the four grant cycles—not the number of Grantees.

The subcategories of systems change in the tables are not always mutually exclusive. For example, increased access to home and community-based services can occur by increasing access to existing services as well as by funding new services or expanding existing services. In some instances, a new or expanded service could also increase access to existing services, such as when a state decides to expand funding for transition case management.

The general systems change subcategories in the table cover a wide range of changes. For example, new policies and procedures or entities to enable or facilitate consumer-directed services includes many changes that states made to support consumer-directed service options, such as changes in regulations to allow relatives to be hired and changes in statutes or regulations to allow consumers to direct their workers to perform health-related tasks. For a more detailed description of the enduring improvements brought about by each Grantee, readers should consult the six final reports listed with links in Appendix B.

Examples of changes in each major category are presented below to provide a brief overview of the range of enduring systems improvements that were brought about, at least in part, through the Systems Change grants.

Access to Existing Home and Community-Based Services

Lack of access to home and community-based services can lead to institutional placement for people of all ages with disabilities. As shown in Table 2, states used several approaches to improve access to existing services and supports, some of which are discussed below.

Table 2. Access to Home and Community-Based Services
System Improvement	Total States
New or improved assessment tools and eligibility processes	9
Improved or expanded information and referral service	6
New information and referral website, toll-free telephone system, resource center, single point of entry, or network	17
New Family to Family Health Care Information and Education Center	18
New or expanded transportation options	4
New policies and procedures to facilitate transition/diversion	28
New Money Follows the Person policy and infrastructure	7
Increased state transition capacity	11
Increased Independent Living Center transition capacity and collaboration	13

Most states had at least one initiative to increase access to existing services, including the development or expansion of information and referral systems. For example, Alabama's Volunteer and Information Center expanded its 211 Connect program—an information clearinghouse for long-term care information and referral—from just 4 counties to two-thirds of the State's 67 counties. Minnesota created Disability Linkage Line, a toll-free phone system that provides information and referral about state and local services for persons of all ages. Disability Linkage Line also partnered with a similar service, Senior LinkAge Line, which operates through Area Agencies on Aging. The two systems hold joint trainings and coordinate joint marketing and outreach.

Eighteen states developed Family to Family Health Care Information and Education Centers, which provide information and education to the families of children and youth with special health care needs (CYSHCN) to help them navigate the health and long-term care systems and obtain the wide range of services their children need.

Lack of affordable and accessible transportation reduces the number of direct care workers who can reliably provide in-home services and reduces access to community services and primary health care for persons with disabilities. Four states expanded their transportation systems to enable persons who have a disability to access community-based services and supports, thereby reducing or eliminating their need for institutional services. For example, Montana's grant financed an initiative to implement a coordinated transportation system and eliminate service overlap in two communities. Based on the project's success, the Department of Public Health and Human Services' Office of Transportation is collaborating with the Montana Department of Transportation to implement the grant's transportation project statewide.

Many states developed policies and procedures to facilitate the transition of nursing home residents to the community. For example, Missouri enacted a law that requires human services agencies to disseminate information about HCBS options to nursing home residents interested in transition and later expanded the mandate to include other target groups as well, including people at risk for nursing home placement.

Maryland enacted new legislation requiring a nursing home resident to be admitted to an HCBS waiver program if (1) the person lives in a nursing home at the time of the waiver application, (2) Medicaid has paid for the individual's nursing home stay for at least 30 consecutive days immediately prior to the application, (3) waiver eligibility criteria are met, and (4) services qualify for federal matching funds.

New or Expanded Home and Community-Based Services

States also developed new services or expanded existing ones. Table 3 presents the major types of service expansion that states implemented. A few examples of new or expanded services are described below.

Table 3. New or Expanded Home and Community-Based Services
System Improvement	Total States
Liberalized financial eligibility criteria for waiver program	2
Expanded coverage for under-65 population in existing waiver program	2
New Section 1115 waiver offering equal access to home and community-based services and nursing homes	1
New funding for transition expenses	23
New funding for non-Medicaid service(s) or program	8
Increased funding for home and community-based services (both waiver and State Plan)	7
Increase in waiver slots for people transitioning	6
Environmental modifications added to waiver program	1
New Program of All-Inclusive Care for the Elderly (PACE)	1
New funding and processes to support youth transitioning to adult services and supports	2
New or expanded community service options for people with psychiatric disabilities	18

Grantees in 23 states amended waiver programs to cover transition costs such as rent, phone and utility deposits, home furnishings, household goods, and moving expenses incurred by first-time renters moving into their own apartments from a nursing home or group home. Although this coverage is not technically a service, the new funding for these expenses enables many nursing home residents to move to the community.

When Georgia's grant ended, the State appropriated $7.25 million for non-Medicaid covered transition expenses as well as for the cost of the first year of home and community services for individuals for whom there were no waiver slots. After individuals have been supported with these funds for a year, the State creates a new waiver slot to continue services. Michigan authorized new waiver slots for persons transitioning to the community if they have been in a nursing home for more than 6 months. Additionally, for each successful move to the community, the State provides transition costs and waiver services for one additional Medicaid nursing home resident without regard to length of stay.

Eighteen states developed new or expanded existing community support services for people with serious mental illnesses, and two states developed the regulatory infrastructure to cover services in assisted living settings under waiver programs: an existing waiver in the District of Columbia and a new assisted living waiver under development in Louisiana.

Oklahoma used its grant to fund an analysis of the regulatory environment for Medicaid-funded assisted living and a specification of assisted living services standards that would meet federal Medicaid requirements. Subsequently, the State prepared a waiver amendment to add assisted living services in its Aged and Disabled waiver program.

Indiana developed an innovative video monitoring system with grant funds, which is now an approved service for certain individuals receiving waiver services in Supported Living Arrangements. The video and audio monitoring system allows individuals with disabilities to enjoy a greater level of autonomy by being able to spend a night alone in their own home/apartment when no workers are present to ensure their safety. The system also allows one staff person to monitor multiple individuals/locations from a centralized monitoring site.

Personal Assistance Services and Consumer-Directed Services

Personal assistance is the key long-term care service that enables individuals with disabilities to live in the community. Increasing the availability of personal assistance, improving the delivery of personal assistance services, and increasing the availability of consumer-directed services were major goals of the Systems Change grant program. About half of the states received Community-Integrated Personal Assistance Service and Supports grants, and many Real Choice Grantees also had initiatives in these areas. Table 4 summarizes their major improvements followed by several examples.

Table 4. Personal Assistance Services and Consumer-Directed Services
System Improvement	Total States
New education and training materials for consumers and/or providers	11
Policies and procedures to enhance PAS provision	6
Policies, procedures, or entities to enable or facilitate consumer-directed services	17
New infrastructure for consumer-directed services	14
New or expanded consumer-directed services option	27
New methods to recruit and retain workers (training, certification, career ladder, benefits)	12
New worker registries and support organizations	8

Although all of these Grantees made major improvements, Nevada's grant achievements are particularly noteworthy. Nevada made many PAS–related policy changes to increase the availability of personal assistance services and facilitate and improve service delivery: (1) creating a budget category that includes automatic increases for Medicaid and non-Medicaid PAS programs; (2) allowing non-Medicaid PAS recipients to choose anyone they wish as their personal assistant; (3) allowing spouses, legal guardians, and parents of minor children to direct personal assistance services on behalf of a person who is unable to self-direct; and (4) implementing a methodology and establishing a rate structure for setting consistent provider rates across Medicaid and non-Medicaid PAS programs that are high enough to attract high-quality providers. The State also established common training standards and quality assurance provisions for personal assistance services within the Medicaid State Plan PAS option and the non-Medicaid PAS program.

Although other states' regulatory changes were less comprehensive, they all facilitated the provision of personal assistance services and the ability of people with disabilities to live in the community. For example, Nebraska revised its personal assistance services and hospice regulations so that direct care workers hired by consumers could perform health maintenance tasks that, prior to the rule change, could be provided only by licensed nurses.

Minnesota made a statutory change to facilitate PAS availability by allowing a “shared care” option for consumers in the State's consumer direction program. Shared care allows up to three consumers to share a personal care assistant if they are in the same location at the same time, decreasing the need for multiple personal care assistants. Oklahoma redefined personal assistance services to include those provided outside the home, such as companion services to attend church or other activities, and transportation services.

Many states developed components of the infrastructure needed to support consumer-directed services and several grantees designed and implemented new consumer direction programs. Iowa added self-direction to six of its Medicaid waiver programs, and Colorado mandated a consumer-directed services option for all waiver programs. Nebraska used grant funds to pay initial workers' compensation premiums for workers participating in its consumer-directed PAS program and then established a mechanism for continued funding of premiums by allocating a portion of the program's payment rate for this purpose.

Quality Management Strategies

Helping states improve their quality management systems was a major goal of CMS, which awarded 28 Quality Assurance and Quality Improvement grants over two grant cycles. In addition, many states used their Real Choice grants to work on QA/QI initiatives. As shown in Table 5, Grantees addressed different components of quality management, some of which are discussed below.

Table 5. Quality Assurance and Quality Improvement
System Improvement	Total States
New quality management system (indicators, provider standards, monitoring tools/processes)	19
New/improved methodology/tool/indicators to measure participant outcomes	23
New quality management infrastructure, including electronic system components	18
New/improved complaint and critical incident reporting/remediation process	10
New methods to involve participants in QA/QI processes and policy development	16

Many initiatives focused on improving data collection and reporting efforts whereas others focused on developing new indicators for measuring the quality of services and consumer outcomes. For example, Massachusetts identified health and safety indicators that could be used by developmental disability service systems in New England to compare their performance on these measures. The enhanced indicators were subsequently added to the National Core Indicators, a national database to assist state agencies in measuring their performance in various service domains. Florida developed a personal outcomes measurement tool to collect data on the quality of developmental disability services and the State's Quality Improvement Organization is now required to use the new tool to determine whether Medicaid services are person-centered and whether they are complying with federal and state regulatory requirements.

Maryland established a model for quality monitoring using data from consumer surveys conducted under the grant, and Oklahoma created an automated system to monitor provider performance on quality indicators and to regularly feed back the results. The system integrated waiver information and complaint/resolution management systems with continuous quality improvement tracking measures.

In response to concerns about the lack of consumer input in quality management processes, many Grantees increased consumer involvement in HCBS quality monitoring. Kentucky's National Core Indicators established a permanent role for consumers and family members in its data collection process, and Minnesota's Disability Services Division now requires consumer input in all long-term care initiatives.

Affordable and Accessible Housing

Increasing access to affordable and accessible housing was not a primary focus of the Systems Change grant program because the federal authority for doing so lies with the Agency for Housing and Urban Development (HUD). Nonetheless, because the lack of housing is a major barrier to community living generally and nursing facility transition specifically, many of the NFT and other Grantees had an initiative to address the lack of affordable and accessible housing. Additionally, in FY 2004, CMS awarded eight grants to (1) improve access to affordable, accessible housing that is coordinated with long-term services and supports and (2) to help states develop methods to better coordinate or provide long-term services and supports in subsidized housing. Table 6 presents the enduring improvements that the Grantees brought about in the housing area.

Table 6. Enduring Changes in Housing Infrastructure, Policy, and Funding
System Improvement	Total States
New funding for affordable and accessible housing targeted to people with disabilities	7
Improved housing accessibility	3
Increased access to services and supports	4
New infrastructure to link housing and services sectors	5
Policy and regulatory reform to promote community living	11

Two states in particular stand out for their extensive success in this area. North Carolina created a rent subsidy program for tenants with disabilities who could not afford apartments set aside for them in Low-income Housing Tax Credit (LIHTC) properties. Simultaneously, grant staff set up 35 local Housing Support Committees to identify individuals with disabilities who wish to live in the set-aside units and community providers willing to furnish services. Accomplishments under the grant helped to convince the state legislature to appropriate $25.4 million to increase the supply of independent apartments for low-income people with disabilities and an additional $ 6.5 million in recurring funds to provide rental assistance.

Pennsylvania created incentives to reward developers who agreed to set aside 10 percent of their LIHTC units as accessible housing for individuals with very low incomes; by the end of the grant period, 668 new affordable and accessible units had been funded by the housing agency. Pennsylvania's grant staff also worked with the state housing agency and 10 county housing authorities to establish a policy that gives individuals transitioning from nursing facilities priority for renting publicly subsidized apartments. As a result,572 nursing home residents have moved into affordable, accessible housing found through the State's Apartment Locator website.

II. Continuing Challenges and Barriers to Community Living for People with Disabilities

At the end of the grant period, Grantees were asked to identify the continuing challenges and barriers to community living for persons with disabilities. They identified many, which have been grouped into 11 major areas, discussed below.

Lack of Knowledge about HCBS Options

Lack of knowledge—among both providers and consumers—about HCBS options was cited as a continuing access barrier, compounded by the lack of statewide activities to provide information and education. Even if providers are knowledgeable about home and community-based services, they may not be familiar with their state's nursing facility transition process and the resources available to support transitions. Several states developed initiatives to educate nursing home staff about the transition process and home and community-based services, but high staff turnover means that states must offer this training on an ongoing basis.

Restrictive HCBS Eligibility Criteria

Some Grantees identified their states' restrictive financial eligibility criteria for HCBS waiver programs as a significant barrier to the receipt of services; for example, some states—such as North Carolina—do not use the 300 percent of SSI special income standard to establish financial eligibility for waiver programs. North Carolina's income limit for its Aged and Disabled waiver program is the federal poverty level.

Higher income eligibility standards for nursing homes than for waiver programs also mean that some nursing home residents may be unable to afford to live in the community. In addition, in some states, the more generous spousal impoverishment protections for individuals in nursing homes than for those in waiver programs create a disincentive for married individuals to leave a nursing home.

Stringent level-of-care criteria for HCBS waiver programs also pose an access barrier in some states, making it more difficult for individuals to become eligible for services unless they have severe or extensive functional limitations or medical needs.

Finally, even in states with multiple waiver programs, some individuals with disabilities who need long-term services and supports do not receive any services at all, or receive less than they need—because each waiver has its own target population, diagnostic criteria, medical and/or functional service criteria, and financial eligibility criteria, which results in some individuals “falling through the cracks.”

Inadequate Range and Amount of HCBS to Meet Need

According to Grantees, the most common barrier to community living for people with disabilities is the lack of a comprehensive range of home and community-based services to meet individuals' needs. Grantees mentioned many specific services that their states do not cover—or do not cover sufficiently; the most frequently cited are home modifications, durable medical equipment, and assistive technology and devices.

States also limit the amount of services a waiver participant can receive by setting a per capita cap equal to a percentage of the average annual cost of a nursing home in the state. Although some states set the cap at 100 percent, others use a cap as low as 60 percent. A low cap may be inadequate to safely support individuals with extensive and/or complex medical needs in the community. In some states, individuals with extensive needs can be served in assisted living facilities, but not all states license assisted living facilities to care for such individuals.

As a result of such barriers, home and community-based services are often not the first option for those at risk for nursing home placement. In the absence of sufficient services, hospital staff will not discharge patients to their homes, sending them instead to a nursing home. Once admitted to a nursing home, residents often lose their housing, their savings, and their community support network. SSI-eligible residents receive a personal needs allowance of only $30 a month, making it impossible to save enough to transition back to the community without government assistance.

Insufficient Coverage of Transition Case Management and Transition Expenses

Federal Medicaid policy permits waiver programs to cover transition case management services for up to 180 days prior to discharge from a nursing home and to cover one-time transition expenses such as rent and utility deposits and moving expenses. However, not all states cover transition case management and transition expenses. Additionally, intensive case management is required to successfully transition nursing home residents who are located in sparsely populated, geographically isolated, and service-poor areas, as well as residents who have extensive or complex medical needs and/or need to find housing in a competitive market. Even if a state covers transition case management services, the amount needed may exceed case managers' ability and time to provide.

In some states, too few case managers are trained to provide transition services, and in others, funding shortfalls have resulted in an insufficient number of case managers. For example, because of its budget deficit, New Jersey has a no-hire policy that, combined with staff attrition, has led to a shortage of staff to provide transition services. At the time the grant ended, the State had only 50 staff members working on transitions compared with a previous high of 80.

NFT Grantees were most likely to highlight the need for more funding to cover case management and transition/relocation services and expenses, and several mentioned that their state had received a Money Follows the Person Demonstration grant and planned to develop new approaches to funding case management under the grant.

Resistance to Nursing Home Transitions

Many Grantees stated that family members, nursing home staff, physicians, and the nursing home industry generally did not support—and sometimes actively resisted—transitions. Many Grantees noted the strength of the nursing home lobby in their states and difficulty overcoming its organized resistance to nursing facility transition and diversion programs.

Resistance from family members may be based on their low estimates of their relative's capacity for independent living or they may be unwilling and/or unable to provide care, particularly if the nursing home admission followed years of care by family members. Nursing home staff and physicians may not believe that certain individuals can live safely in the community, especially those with extensive functional limitations or medical and nursing needs. Although education may be able to overcome such resistance, a considerable amount of political support and/or case managers' time may be needed to address it, which can slow or sometimes block the transition process.

Difficulty Implementing Consumer-Directed Services Options

Although every state has at least one consumer direction program, this does not ensure that a consumer-directed services option is available to all individuals who want it. (The District of Columbia does not have a consumer direction option.) Pamela Doty, U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. Personal communication, August 2009. Resistance to the philosophy of self-determination and consumer direction was noted as a continuing challenge to expanding consumer direction options. This resistance is found among state agency staff and service providers who think that people with disabilities need to be taken care of, rather than be helped to live independently—particularly individuals with developmental disabilities.

Several Grantees mentioned that their states had limited consumer-directed services options and faced challenges implementing or operating consumer direction programs. For example, some states allow consumers to hire and manage their workers but not to direct an individual budget. Several also identified state-specific requirements that impede development of consumer-directed services options (e.g., a rule that prohibits self-directing consumers from using a traditional agency for any services—even for backup). State rules governing workers' compensation insurance and overtime pay were also cited as a major challenge to implementing consumer-directed services programs.

Eligibility/Enrollment/Services Initiation Delays

Grantees cited a wide range of administrative and bureaucratic barriers that impede timely access to Medicaid waiver services—whether an individual is seeking to avoid nursing home placement or to transition from a nursing home. They include (1) a lengthy process for Social Security Administration disability determinations, (2) delays in waiver eligibility determinations and service plan development, (3) lack of provisions for presumptive eligibility, (4) lack of an expedited enrollment process for nursing home residents who want to transition or for Medicaid-eligible individuals at risk of nursing home placement, (5) overly complicated and time consuming billing procedures for obtaining federal financial participation for new waiver transition services, and (6) inaccurate agency records that are not corrected in a timely manner (e.g., the Social Security Administration listed a nursing home resident as deceased and it took a considerable amount of time to correct the error). A few Grantees said their states planned to address these enrollment barriers under their Money Follows the Person Demonstration grant or a Systems Transformation grant.

For individuals with disabilities—as well as case managers—it is difficult and time consuming to navigate multiple programs that provide services to discrete target populations, each with its own eligibility rules, service names, and definitions. The difficulty increases for individuals with multiple disabilities or co-morbidities because duplicative applications and documentation requirements often lead to service delays. Additionally, many programs have a “payer of last resort” policy that requires applicants to expend considerable time and energy documenting their inability to obtain services from other programs.

Statutory, Regulatory, and Other Policy Barriers

In some instances, efforts to implement new HCBS options or improve current services require amendments to statutes or regulations. State Nurse Practice Acts were the most frequently cited statutory barrier, with Grantees mentioning provisions that prohibit nurses from delegating medication administration and other nursing tasks as barriers to community living generally and to consumer-directed services specifically. For example, some states permit relatives to perform skilled nursing tasks in their role as an unpaid worker, but not as a paid consumer-directed personal assistant, thus reducing the potential labor pool for consumer direction program participants. Other states' provisions regarding delegation do not allow parents to delegate skilled nursing tasks to workers whom they hire and supervise even though they have been trained by an RN to provide them.

Additional federal and state regulatory and policy barriers were also cited. Some allow particular services only for individuals meeting certain criteria—unrelated to their eligibility for services—such as restricting the funding of relocation expenses to individuals with a nursing facility stay of at least 18 months. Other policies mentioned prohibit personal care attendants from assisting individuals in critical areas, such as helping them to find supports or conferring with physicians and specialists, particularly important when the personal care attendant also serves as an interpreter.

Grantees also identified the lack of coordination between federal policies governing publicly assisted housing and supportive services as a significant barrier to achieving a more balanced long-term care system. One factor that impedes effective coordination is lack of knowledge of each other's systems among staff in the housing and service sectors.

Lack of Affordable, Accessible Housing

Most Grantees identified the lack of affordable, accessible housing and a full continuum of supportive housing—including group homes, assisted living, supported living, and other residential options with services—as a continuing barrier to community living. The lack of affordable housing is particularly a problem for individuals with disabilities whose income is low enough to meet the SSI eligibility standard, many of whom cannot afford to rent publicly subsidized units without additional rental assistance.

Grantees cited a number of factors that contribute to the lack of affordable, accessible housing, including (1) an inadequate supply of new affordable housing properties; (2) conversion of publicly assisted housing units to market rate housing; (3) unaffordable rents in low-income housing tax credit properties; (4) an insufficient supply of Section 8 housing vouchers, which in turn causes waiting lists of 2 to 3 years—and even longer in states affected by recent hurricanes; (5) rental subsidies that are too low to make housing affordable; (6) a low vacancy rate and high demand for subsidized apartments; (7) a reduction in the number of landlords who will accept vouchers—by 60 to 70 percent in one state—due to negative experiences with tenants who had them; (8) HUD requirements for a clear credit history and no criminal background, which exclude some nursing home residents from rental assistance programs; (9) no requirements or incentives for property owners to list vacancies in housing registries; and (10) inflexible HUD>requirements, such as for individuals to apply in person to register on a HUD waiting list, which presents a major barrier for many institutional residents. Additionally, affordable housing may be available only in areas without public transportation.

Although some Grantees succeeded in convincing their states' housing authorities to set aside Section 8 housing vouchers for individuals with disabilities, including those transitioning from nursing homes, the lack of affordable and accessible housing remains one of the most significant barriers to community living for people who want to move out of an institutional setting.

Lack of Transportation

Another frequently mentioned obstacle to community living is the lack of transportation. Individuals who transition to areas with no public transportation may feel socially isolated, which, in some instances, can lead to a return to the nursing home. Many workers also need public transportation to get to and from work. Lack of transportation is particularly acute in rural areas, where existing resources may be inconsistent and unreliable.

Other transportation issues Grantees mentioned include the following: (1) current funding sources do not cover transportation costs for housing searches and other transition-related activities; (2) transportation providers do not offer “pickups” from nursing homes because of liability concerns; (3) nursing home staff lack knowledge about transportation options for people with disabilities; and (4) housing units often are not on bus routes, and bus stops are not located close enough to housing units that serve elderly persons and persons with disabilities.

Shortage of Direct Care Workers

A shortage of workers to provide personal assistance in home and community settings was frequently cited as a barrier to community living. Multiple interrelated factors underlie workforce shortages, such as low wages; lack of benefits; a shrinking pool of traditional caregivers; and lack of reimbursement for transportation, particularly in rural areas. Grantees understood that states cannot resolve workforce shortages alone and that solutions will require collaboration among federal and state agencies, employers, educational institutions, and unions.

In addition to workforce shortages, other workforce challenges identified by Grantees include (1) a lack of reliable workers, primarily due to the lack of transportation; (2) lack of honest workers—in some instances, consumers reported that personal assistants stole medications and cash; (3) inflexible minimum hour requirements for agency workers; (4) difficulty finding workers for weekend work; and (5) lack of standardized education and training for workers.

III. Recommendations to Improve States' LTC Systems

The first four cycles of Systems Change grants enabled states to make significant improvements in their long-term care systems, but many challenges and barriers remain. Much needs to be done to continue transforming states' long-term care systems so they can better support individuals with disabilities in their communities.

Grantees made numerous recommendations to address the continuing challenges they identified. Although Grantees' recommendations for policy changes were often state specific, many apply more generally to all states. These and other key recommendations are discussed below.

Increase Access to Home and Community-Based Services

A major goal of the Systems Change Grants Program is to increase access to and the availability of home and community-based services. Grantees made a wide range of recommendations to do so.

Increase Access to Existing Services

To make it easier for individuals to obtain existing home and community-based services, Grantees recommend that states

Lessen the stringency of state level-of-care criteria for nursing facilities and waiver programs.
Implement presumptive financial eligibility for 60 days, particularly when eligibility determination has been delayed by applicants' difficulty in locating necessary documentation.
Allow access to HCBS programs without a wait—as is done for nursing home admissions. Nursing homes assess eligibility after admission, and a similar approach is needed for waiver programs.
Minimize delays between eligibility determination and service initiation.
Develop single entry points statewide to (1) provide information and referral for the full range of disability and aging services and supports, (2) divert people from nursing homes, and (3) help to transition residents in institutions back to the community.
Develop a single point of entry for children and youth with special health care needs (CYSCHN) to provide information about the systems that serve them.
Facilitate working relationships among state and local agencies serving children and youth with special health care needs to (1) share scarce resources and leverage new ones, (2) increase access to and the availability of services for CYSHCN, and (3) reduce duplication of effort and develop effective shared strategies for providing information on services and supports to families of CYSHCN.

Increase the Type and Amount of Home and Community-Based Services

In addition to increasing access to existing services, most Grantees agreed that states needed to increase the types and amounts of services available. They recommend that states do the following:

Increase the number of waiver slots—both for community residents to prevent unnecessary institutionalization and for nursing home residents to enable transition.
Ensure that waiver programs offer a broad array of services and supports so that individuals with extensive needs can be served in the community.
Ensure that a comprehensive range of services are available statewide for children with special health care needs.
Increase funding for programs serving non-Medicaid eligible individuals.
Implement the new HCBS option under the Deficit Reduction Act of 2005 to develop programs that will serve a broader target group of individuals with a wide range of needs.

Reduce Financial Disincentives to HCBS Waiver Participation

State financial eligibility criteria for home and community-based services can create significant disincentives to receiving services in the community. Grantees made the following recommendations to reduce these disincentives:

Provide the same financial protections for the spouses of waiver participants as is provided for the spouses of nursing home residents, so that married individuals can remain in the community without impoverishing their spouse.
Level the playing field between the nursing home and waiver programs by establishing a community spend-down option.
Permit waiver participants to retain sufficient income to pay for community housing through Medicaid rules governing post-eligibility treatment of income.

Ensure Effective Nursing Facility Transition Programs

The NFT Grantees and many others who worked to develop transition programs and policies made numerous recommendations, aimed at improving the effectiveness of NFT programs. These include the following:

Establish a “fast track” process for waiver eligibility determinations and service approvals for nursing home residents who are transitioning.
Remove barriers in the Medicaid waiver program that prevent the delivery of services immediately prior to and after discharge, such as one requiring that a resident be discharged from the nursing home before waiver-funded home modifications such as ramps can be made.
Allow maximum flexibility to cover transition-related services and expenses, which is particularly important when transitioning individuals with extensive and/or complex needs. Each transition is unique; many factors determine whether a transition will occur, and nursing facility transition programs cannot anticipate every possible transition barrier.
Operate NFT programs as an integral component of state waiver programs or ensure coordination between the programs to eliminate the administrative costs of a separate, stand-alone transition program and to make use of the extensive experience of waiver case managers.
Build strong, local coalitions and networks to develop and sustain the nursing facility transition infrastructure and use collaborative techniques and public and private community-based partnerships to identify needs and solve problems for individuals seeking to transition to community-integrated living.
Ensure that training is provided on an ongoing basis for transition staff, nursing home staff, and other stakeholders to address staff turnover.
Amend all waiver programs to cover transition expenses and allow flexible use of the funds, not just to cover rental and utility security deposits and essential household items, but to address service gaps during the critical period immediately after discharge when all services and supports are not yet in place.
Fund transition case management at a high enough level to ensure that all individuals who want to transition—particularly those with extensive needs—can do so. Transition case management can be covered as either a Medicaid administrative expense, through the targeted case management option, or as a waiver service to obtain the maximum federal match.
Establish a transition program that funds case managers specifically to work on transitions, which can take 2 weeks to 6 months to complete. States also should provide the flexibility to allow the development of customized transition teams to accommodate time, travel, and resource constraints in rural areas.

As important as NFT programs are, many Grantees also saw an even more urgent need for nursing facility diversion programs and believe that states should require a formal process to ensure that everyone applying for nursing facility admission is first assessed to determine whether they can be served at home or in community-based residential settings.

Although all the recommended actions to increase access to HCBS programs are important, many Grantees believed that in the absence of a federal mandate for home and community-based services, the only way to ensure access is for states to institute a global budget for all of their long-term care programs or, at the very least, a Money Follows the Person policy. A global state budget for long-term services and supports would eliminate budgetary distinctions between institutional and noninstitutional services, and an MFP policy would provide a system of flexible financing for long-term services and supports that enables funds to move with individuals to the most appropriate and preferred setting as their needs and preferences change. Many Grantees recommended that states institute either a global budget or an MFP policy.

Prevent Nursing Home Admissions from Becoming Long Stays

Grantees also suggested that states implement policies and procedures to ensure that people who enter nursing homes do not stay any longer than they need. Several Grantees pointed out that it is essential that those who can be served in the community be discharged before they lose their housing. Recommendations include the following:

Require nursing homes to provide information about home and community-based services to newly admitted residents and require nursing homes to improve their discharge-planning procedures to facilitate successful transitions.
Extend the Medicaid cost-sharing exemption for nursing home residents from 1 to 6 months to enable them to maintain their community housing.
Limit initial Medicaid approvals for individuals being admitted to nursing homes—or who are transitioning from Medicare post-acute to Medicaid coverage—for a time period appropriate to their condition, and require a reassessment to determine whether they need to remain in the nursing home before extending the approval.

Increase Access to Consumer-Directed Services Options

Another major goal of the Systems Change grants was to increase consumer choice and control over the services they receive. Grantees with initiatives in this area made a number of recommendations to achieve this goal.

Expand Consumer-Directed Services Options

Grantees believe that states should continue to expand consumer-directed services options, particularly those that give individuals control over an individual budget. The greater flexibility afforded by having consumer direction options included in all waivers and other long-term care programs will better enable individuals to meet their needs, particularly options that allow them to control an individual service budget. States should also allow flexibility in determining budget allocations to address participants' changing needs and use flexible funding categories to better accommodate individual needs.

Many grantees also recommended that states offer individuals interested in directing their services several options for handling employer and financial responsibilities, such as an agency-with-choice model, where an agency is the employer of record and handles the paperwork, and a fiscal agent model, where the consumer is the employer of record and pays a fiscal agent to perform employer-related paperwork.

Address Resistance to Consumer Direction

The consumer direction model represents a major paradigm shift from the traditional service delivery model. Long-term service and supports providers may be unfamiliar with the model or hold negative views regarding the ability of people with disabilities to direct their services. To assist providers in making the paradigm shift, Grantees recommended that states take steps to understand their concerns and then address them systematically by using research findings and lessons learned from other states' experiences.

To reduce the potential for provider resistance, Grantees suggested that states frame new consumer direction options as one in a continuum of options for service delivery, including the traditional agency service option. This approach can help to defuse provider opposition as well as to promote informed choice by service users. In addition, to increase professional staff's knowledge of consumer direction options, states should provide continuing education or licensing credits for completing training about consumer direction.

Remove State and Federal Policy Barriers

Many states have policies that present barriers to the operation of consumer direction programs or make them more difficult to operate. The obstacles mentioned most frequently by Grantees are (1) Nurse Practice Act provisions that impede the operation and cost-effectiveness of consumer direction programs, and (2) difficulty obtaining affordable workers' compensation insurance. Some states have dealt effectively with these issues, but many have not.

States' statutory and regulatory definitions of domestic employees, co-employers, and joint employers may also make it difficult to determine the eligibility of workers hired by consumers for overtime pay and workers' compensation. To address this problem, states need to clarify these definitions and, ideally, both state and federal law will use the same definition of “domestic employee” to resolve issues related to overtime pay.

In addition, states considering managed care arrangements for long-term services and supports need to ensure that managed care networks offer the same consumer-directed services options that are available in the fee-for-service program and adhere to all their provisions; for example, allowing spouses and parents of minor children with disabilities to be personal care assistants under specific circumstances.

At the federal level, the provision of the Deficit Reduction Act that created the Section (§) 1915(j) State Plan authority requires that financial management services (FMS) be paid as an administrative expense with a federal match rate of 50 percent. For states with higher service match rates (e.g., 70 percent in Montana), a 50 percent match rate for FMS can be a disincentive to offering consumer-directed services options under the State Plan personal care option. Thus, Grantees recommended a statutory change to allow FMS to be reimbursed at the service rate under the new (j) authority.

Improve Quality Management Systems

Another major goal of the Systems Change grants was to help states improve their quality management systems. Many Grantees experienced considerable difficulty achieving their goals and made specific recommendations for states undertaking QA/QI initiatives as well as for changes in CMS policy.

Recommendations for States

Several recommendations are directed at what states need to do to make general improvements in their HCBS quality improvement system: (1) provide ongoing financial support for HCBS quality management; (2) update information technology (IT) systems to make communication more efficient and timely and to reduce paperwork; and (3) provide more training to all relevant parties regarding various QA/QI activities, such as reporting abuse, neglect, and exploitation.

Other recommendations are based on Grantees not always succeeding in their efforts to improve their states' HCBS quality management systems and are quite specific regarding how states should operate QA/QI systems change initiatives. For a quality management initiative to succeed, Grantees recommended that a state do as follows:

Undertake a systematic analysis of its current QA/QI system—including its IT capabilities—to determine what is needed and to plan for future investments. Such an analysis can provide information to (1) coordinate investments across programs, populations, and funders; and (2) avoid duplication of efforts in these investments. This information can be used both in the short term (to guide a specific project) and over the long term to highlight areas that need the most attention and investment.
Identify who will use the quality management system, how it will be used, and who must approve the system design and hardware and software requirements before it can be implemented. Systems should be designed to provide sound information when needed and to have the capability to quickly and easily identify trends, key issues, and patterns to enable rapid resolution of program participants' problems. Additionally, the audience for quality data may need to be educated about how to interpret data. Providers will be reluctant to provide data in the future if the data are misinterpreted and used against providers.
Establish a process for identifying high-performing HCBS providers and offer performance incentives. Doing so will help to embed a new quality management system into professional practice in a way that simple compliance systems can never achieve. This goal requires collaboration among providers, advocates, participants, and families to identify ways to recognize excellence.
Obtain agreement among relevant state agencies early on regarding the amount of resources that are available to hire necessary technical expertise, develop appropriate software applications, and integrate new quality management data with existing data systems. For the initiative to be feasible, states must make a long-term commitment to supporting these types of applications.
Integrate quality management data with other HCBS data systems and projects related to financial systems or other mandated reporting systems whenever possible. Doing so will help to ensure ongoing financial and technical support for the quality data systems.
Involve Quality Improvement Organizations (QIOs) in some or all quality management activities to help assure the public that quality reviews will be objective. Another advantage is that CMS provides a 75 percent federal match for approved QIOs.

Recommendations for CMS

Grantees recommended that CMS

Continue providing grant funding to help states fully implement the systems and technological innovations necessary to meet CMS requirements for §1915(c) evidence-based reporting.
Wait until states have time to work with the new waiver template, instructions, and guidance before making any further revisions. Future changes should shift the primary focus of quality management from emphasizing regulatory compliance to measuring outcomes—or at least achieve a better balance between the two.
Clarify that the waiver assurances differ from the domains in the Quality Framework, even though some appear to be the same (e.g., service planning). The Framework needs to be clarified to ensure that states' data meet waiver requirements.
Provide no-cost technical assistance to help states develop the infrastructure to monitor health care outcomes and HCBS quality. In particular, CMS needs to provide consistent reinforcement of—and help states to better understand and implement—a systems approach to quality management. CMS regional staff who review and approve waiver applications and those who conduct periodic reviews of waiver programs also need to better understand the concepts and requirements of a systems approach to quality assurance and quality improvement. Continuing education for CMS staff in this area would be helpful.
Provide a 90 percent federal match for states to develop data systems that enable them to meet the waiver assurances, even if they are not directly part of the Medicaid Management Information System. Because investments in information technology are essential to improve QA/QI systems, CMS should also consider funding continuing costs for IT systems as well as the initial development costs.
Streamline the process for obtaining the 90 percent match to enable states to update their data systems. CMS wants states to automate data collection and reporting, but most states have old hardware and software and the cost to upgrade is very expensive. To obtain the federal 90 percent match for new hardware, states need to fill out a complicated Advance Planning Document, which is very time consuming.
Amend the Participant Experience Survey to add an option for field notes, which would facilitate the survey process.The survey tool provides ample aggregate-level outcome data that identify programmatic challenges in many service areas. However, it does not provide insight into a program's micro-level dynamics. Adding an option for field notes would compensate for the tool's limitation.

Streamline State HCBS Systems and Reduce Complexity

Many Grantees recommended that states consider implementing major changes to simplify state HCBS systems and make them more responsive to the needs of people of all ages with disabilities. Several noted that the use of multiple waivers in each state—with different eligibility criteria, services, and implementing agencies—is complex and that some individuals with long-term care needs do not receive services because they do not fit into existing program categories. Additionally, states have multiple inflexible funding streams for services for the same target population, making it difficult to provide all of the services an individual needs. To address these problems, Grantees recommended that states do the following:

Combine waiver programs to simplify service delivery for individuals with multiple diagnoses who require services from more than one waiver.
Create a waiver program to serve adults of all ages with all types of disabilities who are not eligible for existing waivers.
Integrate state and federal funding across long-term care programs to create a more efficient and responsive service system that will give individuals more options from which to choose without the limitations imposed by funding sources.

Increase Access to Affordable, Accessible Housing

One of the biggest barriers to community living for persons with disabilities is the lack of affordable housing that is also accessible. To address this problem, many Grantees recommended that states and the federal government act to increase the supply of affordable, accessible housing for people of all ages with disabilities and to improve access to existing housing. In particular, HUD should do the following:

Increase funding of Section 8 housing vouchers and other federally subsidized housing programs for older adults and people with disabilities.
Set aside a greater proportion of Section 8 housing vouchers for individuals of all ages with disabilities, particularly those transitioning from nursing facilities and those at the lowest income levels.
Increase from 4 months to 6 months the period that individuals can keep their housing subsidy if they are temporarily institutionalized.
Establish an accessible and easy-to-use process for institutional residents to apply for publicly subsidized housing. Currently, individuals must apply in person, which is difficult, if not impossible, for nursing facility residents who must arrange for accessible transportation to make multiple trips for multiple applications to multiple HUD housing sites.

Other recommendations for federal and state housing programs include the following:

Give priority to older adults and people with disabilities in states' allocation plans for low-income housing tax credits.
Give priority on waiting lists for housing vouchers and other publicly assisted housing programs to individuals who are waiting to transition from nursing homes.
Increase funding for housing models that promote self-direction and independent living and to ensure accessibility; for example, by redirecting funding from developing age- and disability-segregated housing to tenant-based rental assistance programs that allow individuals more choice in selecting community-integrated housing.

Additionally, federal agencies such as HUD, CMS, the Administration on Aging, and the Veterans Administration should coordinate housing and service policy to better meet the needs of persons with disabilities.

In regard to existing housing, states need to provide incentives for landlords to give priority to people of all ages with disabilities for their units that meet state accessibility standards.

Many of these recommendations require increased federal and state resources, and many Grantees acknowledged that lack of funding remains the major barrier. One Grantee noted that its state knows how to develop and finance affordable, accessible housing but has insufficient resources to do so.

Address the Direct Care Workforce Shortage

Increased recruitment and retention of direct care workers is needed to ensure that people with disabilities have access to personal assistance services, and many Grantees with initiatives to increase PAS access also had initiatives to address issues related to workforce shortages. To address the continuing shortage, Grantees recommended that states

Develop and implement training and supervision programs to enable direct care workers to carry out some nursing tasks, such as administering medications that consumers would do for themselves if they were able. Such programs may require a change in the state's Nurse Practice Act.
Institute a wage pass-through to raise the personal care assistant (PCA) rate to a livable wage or better. (A wage pass-through is an allocation of funds passed through Medicaid reimbursements for the express purpose of increasing PCA compensation.)
Ensure health care coverage for personal care assistants.
Provide funding for PCA overtime pay to ensure fair compensation and availability of services when needed. To effectively calculate overtime in a reimbursement rate, providers should collect and report data on the amount of overtime requested and needed in a given year.
Offer training and continuing education opportunities to personal care assistants to improve their knowledge and skills and increase attendance by paying for their time and helping to arrange backup coverage for their clients.

As with some of the recommendations to increase affordable, accessible housing, Grantees recognize that increasing workers' wages and providing benefits require a considerable increase in state and federal resources and thus, lack of funding remains a major barrier to addressing the workforce shortage.

IV. Lessons Learned About Ensuring the Success and Sustainability of Systems Change Grant Initiatives

In the course of implementing their Systems Change grant initiatives, Grantees identified a variety of factors they consider key to bringing about lasting improvements in their long-term care HCBS systems. First and foremost, almost all Grantees agreed that systems change is a long, slow process requiring political will, effective leadership, extensive advocacy, and consensus and collaboration among multiple and diverse stakeholders, including state and local government agencies, political officials, housing and services providers, and consumers. Specific factors deemed important include the following:

Planning for sustainability from the start. Although a detailed sustainability plan may not be developed until later in a project, project staff and stakeholders need to plan for sustainability from the beginning. Sustainability is important not just for policies and programs but also for the processes required to bring about systems change.

Building on existing systems change efforts. The best way to ensure that systems change initiatives will be sustained is either to link them to ongoing high-profile state initiatives or other change efforts, or to ensure that their goals and objectives are an integral part of a state's reform plan for its long-term care system. Grantees with quality assurance and improvement initiatives, in particular, stressed that whenever possible states should combine data system development projects in the quality area with other data systems and projects related to financial systems or other mandated reporting systems to ensure ongoing financial and technical support.

Enlisting the support of key leaders. Strong leadership from the executive and legislative branches is needed. Without high-level support, it is unlikely that resources will be committed to a new initiative and that information about systems changes will be communicated to those whose work will be affected by them. It takes strong executive leadership in particular to bring about systems changes that require cooperation and collaboration among multiple agencies and organizations. Even so, education is sometimes needed to obtain the commitment of relevant government entities to bring about systems change.

Obtaining buy-in from all relevant state agencies. Many Grantees found it difficult to obtain commitment from and meaningful collaboration among multiple state agencies to work on common goals and noted that the current system provides few incentives for such collaboration, particularly on comprehensive systems change initiatives that require multi-year efforts. Working with state agencies to obtain their buy-in takes a lot of work and patience even with support from the executive branch and it should be done prior to initiating systems change activities. Executing Memoranda of Understanding or other formal agreements can help to ensure that agencies provide promised support.

Developing effective communication strategies among all project participants. Comprehensive systems change efforts need an effective strategy for communicating with key leaders and all stakeholder groups on an ongoing basis. Successful strategies generally require multiple communication methods, such as meetings, e-mail, postings on state department websites, and teleconferences. Having a full-time project manager can help states to develop a comprehensive and coordinated communication strategy. Staff should also have ongoing contact with legislators and policy makers to keep them informed about the project and to provide data about its success or cost savings.

Coordinating multiple systems change initiatives. Large state agencies with multiple grants should coordinate activities across grants to prevent duplication of effort and ensure that grant activities in one area are compatible with and complement those in other areas. Using grants synergistically enables states to leverage resources to improve their long-term care system.

Developing realistic and achievable goals. Bringing about enduring systems improvements is a time-intensive process, and states should focus grants on a limited number of clearly defined goals rather than try to address multiple, complex issues. It may be necessary to focus initially on one or two small changes when attempting to bring about systems change within a specified time period because progress is often incremental. It is better to commit to a few major systems change initiatives rather than several to avoid spreading staff and resources too thinly.

Piloting major initiatives. It is unrealistic to try to introduce changes in multiple agencies at the local, regional, and state level in a very large state in a short period. A more practical approach is to pilot a new initiative at the local or regional level to enable project staff to work out operational issues before expansion.

Building in flexibility. When implementing systems change initiatives, it is essential to plan for unanticipated events that may require changes in goals and methods and to develop contingency plans—both to take advantage of emerging opportunities and to address insurmountable barriers identified through formative evaluation. Planning may be difficult because of new leadership, agency reorganizations, budget restrictions, and staff turnover, and staff need to allow time to overcome and/or accommodate inevitable delays.

Staffing for success. Because systems change requires significant state agency involvement, staff should be assigned full time to grant implementation and their usual duties reassigned to other staff for the duration of the grant. Using senior staff as primary grant staff ensures integration of grant goals into existing systems and structures, resulting in more enduring systems improvements. It is also important for staff working on different grants and initiatives to meet regularly to ensure collaboration and the efficient use of resources; a specific individual should be given responsibility for ensuring that this happens.

Involving stakeholders. Involving all stakeholders—consumers and their families, consumer advocates, HCBS providers, housing and other residential providers and developers, and representatives of the state's human services and housing agencies—in the planning, development, and implementation of HCBS systems change initiatives is essential. Input and participation from stakeholders should involve more than serving on an external advisory committee. Providing stakeholders with real decision-making roles in developing program goals, as well as program design, implementation, and evaluation, is most likely to pay off in building long-term support for systems changes.

Involving consumers early on is particularly important, providing a valuable “reality check” for program and policy initiatives and can help drive systems change in ways that state staff cannot. However, staff time and financial resources are needed to ensure meaningful consumer participation.

It is also essential to ensure broad, strategic participation of stakeholders with the authority and responsibility to bring about change. As noted above, enlisting the support of top administrators and securing the commitment of relevant leaders can help ensure that resources will be committed to a new initiative. Hiring professional facilitators to work with stakeholder groups can ensure objectivity, help all stakeholders participate, keep groups moving forward with their agendas, and help reach consensus.

Finally, as one Grantee pointed out, there is no formal road map or protocol for bringing about systems change. The process entails changes in values, beliefs, and behaviors, which require a group of dedicated and committed stakeholders and the commitment by those with authority to implement the policy and procedural changes necessary to sustain the change.

V. Conclusions

The Systems Change Grants Program provides funds to states to develop policies and administrative systems to enable and support the provision of home and community-based services. The formative evaluation conducted by RTI found that with few exceptions, Grantees achieved at least some of their goals, and many implemented programs and made changes that improved their states' long-term care systems; they did so by increasing access to and the availability of home and community-based services, as well as by increasing options for consumers to choose and control their services.

Some Grantees had already committed to reforming their systems before the grants were awarded, and they used their grants strategically to supplement state and other grant funding to further their goals. For states that have traditionally lagged behind in transforming their long-term care systems, the federal commitment to community living for people with disabilities provides an important impetus—and an antidote to continuing resistance among many services providers and state policy officials to achieving a better balance in expenditures between home and community-based services and institutions.

Although the Systems Change grants made a solid contribution to reforming states' long-term care systems in the direction CMS intended, there is a range of strategies for CMS to consider for increasing the impact of future grants, including the following:

Articulating a clearer federal vision of an overall systems change strategy. Each grant cycle had the potential to be a building block in states' broader, more comprehensive strategy, yet many of the states used their grants to implement “standalone” initiatives. Issuing a series of related grants and demonstrating their potential interrelationships could foster more systematically planned reform initiatives.

Providing planning grants and conditional grant funding to ensure that key components of systems change are in place before major grant funding is committed. States need time to obtain necessary state approvals to spend money, build relationships with key stakeholders, pilot infrastructure innovations, and plan for sustainability. Better planning would result in more sustainable change. This funding approach would require an extended grant period, as many Grantees recommended.

Targeting some Systems Change grants to areas and states that are lagging behind. For example, developmental disability agencies and related outside experts dominated much of the work on quality indicators. Targeting the aging community to carry out similar work and to build on related activities could jumpstart progress in this area. Similarly, some states that are far behind in balancing their long-term care systems might benefit from targeted grants combined with intensive technical assistance. Two other areas in particular would benefit from additional grant initiatives: increasing access to and the supply of affordable, accessible housing, and providing technical assistance to states to develop global budgets for long-term care services to ensure HCBS access.

Implementing a strategy for interested grantees to provide technical assistance to one another. Grantees valued the technical assistance they received from CMS-funded consultants and at the annual meeting of all grantees but said they would have welcomed opportunities to consult with other states working on similar initiatives. Purposeful strategies to facilitate sharing among Grantees working on similar initiatives could help them learn from one another.

Identifying a role for relevant national groups to initiate or support systems change. It would be helpful for CMS to identify a specific role in systems change activities for groups such as the National Governors Association, the National Association of State Medicaid Directors, the National Association of State Directors of Developmental Disabilities Services, and the National Association of State Units on Aging. These organizations could help to educate their members about major systems changes issues; for example:

The importance of using performance-based data to make HCBS infrastructure development and funding decisions and of developing the information technology and quality management systems needed to provide such data, and
The need to eliminate administrative and bureaucratic barriers that impede the efficient and effective use of federal grants.

Most, if not all, Grantees experienced delays—some considerable—in implementing their grants because of state rules and regulations. To prevent delays in the future, they made several recommendations to states:

Simplify overregulated, cumbersome, inflexible, and time-consuming state procurement processes that delay the receipt of timely technical assistance from consultants.
Modify state hiring rules so that required personnel can be hired as quickly as possible.
Streamline local procurement rules to avoid delays in obtaining equipment necessary to accomplish work activities.
Exempt federally funded initiatives from freezes on contracts, hiring, and travel.
Allow federal and other grant funding to be spent without legislative approval.

These changes are low- or no-cost improvements that would greatly facilitate the Systems Change and other federally funded grant programs, especially important during economic times when resources are limited.

Systems change strategies provide policy makers with the opportunity to remake the long-term care system rather than simply expanding the current inadequate system to meet increased need. Infrastructure grants are an incrementalist approach to reform that provides extra resources to states to move in the direction of a more balanced delivery system. However, states themselves must be willing to invest more in home and community-based services for the goals to be accomplished.

Many of the challenges and barriers to community living identified by Grantees cannot be addressed with Systems Change grants, and many of their recommendations cannot be implemented without significant increases in state spending. Lack of state funding was cited by Grantees as the major barrier to both increasing home and community-based services and to undertaking activities to improve the long-term care system. Lack of funding was also a significant factor in the inability of some states to sustain Systems Change grant projects after the grants ended.

Weak state economies have reduced state revenues and general fund appropriations relative to inflation—a situation that has worsened considerably since the grants ended. The lack of funding is reflected not only in a continuing shortage of home and community-based services relative to need but an insufficient number of state staff, which slows efforts to reform states' long-term care systems. In such an economic climate it can be extremely difficult, if not impossible, to obtain funding for new initiatives as well as ongoing funding for existing services and HCBS quality assurance activities.

Grantees uniformly endorsed the continuation of the Systems Change Grants Program, many declaring that without the grants they would not have undertaken their initiatives. In many states, the incremental reforms achieved through the grants have enabled additional reforms. For example, one New Hampshire Grantee noted that without the Nursing Facility Transition program developed under a Systems Change grant, the State would have been unable to participate in the Money Follows the Person Demonstration.

With the current and possible future economic downturn, state funding to continue working to achieve a balanced delivery system may well be lacking, and additional assistance from the federal government may be needed to continue the progress being made under the Systems Change Grant Program.

Appendix A

Table A-1A. Federal Systems Change Grants for Community Living, by State and Territory in $thousands, 2001–2003
State	REAL CHOICE Starter	REAL CHOICE 2001	REAL CHOICE 2002	CPASS 2001	CPASS 2002	CPASS 2003	NFT-ILP^a2001	NFT-ILP^a2002	NFT 2001	NFT 2002	IP 2003	MFP 2003
Alabama	50	2,000	–	–	–	–	450	–	–	770	–	–
Alaska	50	–	1,385	900	–	–	–	–	800	–	–	–
American Samoa	50	–	–	–	–	–	–	–	–	–	–	–
Arizona	–	–	–	–	–	600	–	–	–	–	–	–
Arkansas	50	1,025	360^b	900	–	–	–	–	–	598	–	–
California	50	–	1,385	–	–	–	–	337	–	–	–	750
Colorado	50	–	1,120	–	725	–	–	–	800	–	391	–
Connecticut	50	–	1,385	–	–	319	–	–	800	–	175	–
Delaware	50	1,200	–	–	–	–	–	270	–	567	–	–
District of Columbia	50	–	1,385	–	725	–	–	–	–	–	–	–
Florida	50	2,000	–	–	–	–	–	–	–	–	502	–
Georgia	50	–	1,385	–	–	–	400	–	627	–	432	–
Guam	50	673	–	300	–	–	–	–	–	–	–	–
Hawaii	50	1,350	–	–	725	–	–	–	–	–	–	–
Idaho	50	1,102	–	–	–	–	–	–	–	–	500	750
Illinois	50	800	–	–	–	–	–	–	–	–	–	–
Indiana	50	–	1,385	–	725	–	–	–	770	–	–	–
Iowa	50	1,025	360^b	–	–	–	–	–	–	–	–	–
Kansas	50	–	1,385	–	725	–	–	–	–	–	–	–
Kentucky	50	2,000	–	–	–	–	–	–	–	–	–	–
Louisiana	50	–	1,385	–	–	464	–	–	–	600^c	500	–
Maine	50	2,300	–	–	–	–	–	–	–	–	500	750
Maryland	50	1,025	360^b	–	–	–	450	–	800	–	–	–
Massachusetts	50	1,025	360^b	–	–	579	–	–	770	–	500	–
Michigan	50	2,000	–	756	–	–	–	–	770	–	479	747
Minnesota	50	2,300	–	900	–	–	–	400	–	–	–	–
Mississippi	50	–	1,385	–	–	–	–	–	–	–	–	–
Missouri	50	2,000	–	–	–	–	–	–	–	–	427	–
Montana	50	–	1,385	850	–	–	–	–	–	–	500	–
Nebraska	50	2,000	–	–	–	600	–	–	–	600	–	–
Nevada	50	–	1,385	656	–	–	–	–	–	–	–	750
New Hampshire	–	2,300	–	900	–	–	–	–	770	–	–	–
New Jersey	50	2,000	–	–	–	–	–	400	–	600	–	–
New Mexico	50	–	1,385	–	–	–	–	–	–	–	–	–
New York	50	–	1,385	–	–	–	–	–	–	–	–	–
North Carolina	50	1,600	–	–	725	–	–	–	–	600	–	–
North Dakota	50	–	900	–	–	–	–	–	–	–	–	–
Northern Mariana Islands	50	–	1,385	–	–	–	–	–	–	–	–	–
Ohio	50	–	1,385	–	–	–	–	–	–	600	500	–
Oklahoma	50	–	1,385	850	–	–	–	–	–	–	–	–
Oregon	50	2,001	–	–	–	585	–	–	–	–	–	–
Pennsylvania	50	–	1,385	–	–	–	–	–	–	–	–	698
Puerto Rico	50	–	–	–	–	–	–	–	–	–	–	–
Rhode Island	50	–	1,385	540	–	–	–	–	–	600	–	–
South Carolina	50	2,300	–	–	–	–	–	–	–	600	–	–
South Dakota	50	–	–	–	–	–	–	–	–	–	–	–
Tennessee	50	1,769	–	–	725	–	–	–	–	–	–	–
Texas	50	–	1,385	–	–	600	308	–	–	–	–	730
Utah	50	–	1,385	–	–	–	–	400	–	–	–	–
Vermont	50	2,000	–	–	–	–	–	–	–	–	–	–
Virginia	50	1,025	360^b	–	–	514	–	–	–	–	–	–
Washington	50	–	1,385	–	–	–	–	–	770	–	–	608
West Virginia	50	–	1,314	–	725	–	–	–	552	–	–	–
Wisconsin	50	–	1,385	–	–	–	450	–	800	–	–	744
Wyoming	50	–	–	–	–	–	–	–	–	600	–	–
Total	2,650	40,820	35,604	7,552	5,800	4,216	2,058	1,807	9,029	6,735	5,406	6,527

Grant Name Abbreviations

CPASS = Community-Integrated Personal Assistance Services and Supports
NFT-ILP = Nursing Facility Transition, Independent Living Partnership
NFT = Nursing Facility Transition, State Program
IP = Independence Plus
MFP = Money Follows the Person

Data source: U.S. Department of Health and Human Services, Centers for Medicare & Medicaid Services. (2006). Real Choice Systems Change Grants Compendium: 5th Edition. Baltimore, MD. Available at: http://www.hcbs.org/moreInfo.php/nr/source/ 151/lim/ALL/doc/1550/Real_Choice_Systems_Change_Grants:_Compendium_Fift.

Table notes: All figures are rounded to nearest thousand dollar. This table does not include grants for national technical assistance centers or for aging and disability resource centers.

^a Nursing Facility Transitions, Independent Living Partnership Grants were available only to Centers for Independent Living, not state agencies.

^b This award was supplemental to the grant given in FY 2001.

^c Louisiana was awarded this grant after California declined the award (Federal Register, Vol. 68, No. 104/ Friday May 30, 2003/ Notices).

Table A-1B. Federal Systems Change Grants for Community Living, by State and Territory, in $thousands, 2003–2004
State	RFA 2003	RFC 2003	CTAC 2003	FTF^a 2003	FTF^a 2004	QA/QI 2003	QA/QI 2004	LIFE 2004	REBAL 2004	CSR 2004	EPDST 2004	MHST 2004	HOUSE 2004
Alabama	–	100	–	–	–	–	–	–	–	–	–	–	–
Alaska	–	–	–	150	–	–	418	–	–	–	–	–	–
American Samoa	–	–	–	–	–	–	–	–	–	–	–	–	–
Arizona	–	–	–	–	150	–	500	–	–	–	–	–	–
Arkansas	–	75	–	–	–	–	500	–	–	–	–	–	900
California	100	–	–	–	–	500	–	–	–	–	–	–	–
Colorado	–	–	–	150	–	500	–	–	–	–	–	–	–
Connecticut	–	–	–	–	–	499	–	–	–	–	–	–	–
Delaware	–	–	–	–	–	352	–	–	–	–	–	300	–
District of Columbia	–	–	–	–	–	–	–	–	–	–	500	–	812
Florida	–	–	–	–	–	–	475	–	–	–	–	–	–
Georgia	–	–	–	–	–	475	–	–	–	–	–	–	–
Guam	–	–	–	–	–	–	–	–	–	–	–	–	–
Hawaii	–	–	–	–	–	–	–	–	–	–	–	–	–
Idaho	–	–	–	–	–	–	–	–	–	–	–	–	–
Illinois	–	–	100	–	–	–	–	–	300	–	–	–	–
Indiana	–	–	–	150	–	500	–	–	–	–	–	–	–
Iowa	–	–	–	–	–	–	–	–	–	–	–	–	–
Kansas	–	–	–	–	–	–	–	–	–	–	–	–	–
Kentucky	–	–	–	–	150	–	–	–	–	–	–	–	–
Louisiana	–	–	–	–	150	–	–	–	300	–	–	–	–
Maine	–	–	–	–	–	500	–	–	–	–	–	262	–
Maryland	–	100	100	150	–	–	–	–	–	–	–	–	–
Massachusetts	–	–	100	–	150	–	499^b	–	–	–	–	300^b	–
Michigan	–	99	–	–	–	–	–	–	–	–	–	300	–
Minnesota	–	–	–	–	–	500	–	–	–	–	–	300	–
Mississippi	–	–	99	–	–	–	–	–	283	–	–	–	720^b
Missouri	–	–	100	–	–	500	–	–	–	–	–	–	–
Montana	–	–	–	150	–	–	–	–	–	–	–	–	–
Nebraska	–	–	–	–	–	–	470	–	–	–	500	–	–
Nevada	–	–	–	150	–	–	–	–	–	–	–	–	–
New Hampshire	–	–	–	–	–	–	499	100^b	–	–	–	300	900^b
New Jersey	–	–	–	150	–	–	475	–	–	–	–	–	–
New Mexico	–	–	–	–	150	–	–	–	–	–	–	–	–
New York	74	–	–	–	150	496	–	–	–	–	–	–	–
North Carolina	–	–	–	–	150	475	–	–	250	–	–	294	775
North Dakota	–	–	–	–	150	–	–	–	300	–	–	–	–
Northern Mariana Islands	–	–	–	–	–	–	–	–	–	–	–	–	–
Ohio	74	–	–	–	–	500	–	–	–	–	–	300	–
Oklahoma	–	–	–	–	–	–	–	–	–	–	–	300	–
Oregon	–	99	–	–	–	455	–	–	–	–	–	300^b	828
Pennsylvania	–	–	–	–	–	499	–	–	–	–	–	300	893
Puerto Rico	–	–	–	–	–	–	–	–	–	–	–	–	–
Rhode Island	100	100	–	–	–	–	–	–	–	–	–	–	–
South Carolina	–	–	–	–	–	500	–	–	–	–	–	–	–
South Dakota	–	–	–	150	–	–	–	–	–	–	–	–	–
Tennessee	–	–	–	–	–	453	–	–	291	–	–	–	–
Texas	–	–	94	–	–	500	–	–	–	–	–	–	–
Utah	–	–	–	–	150	–	–	–	–	–	–	–	–
Vermont	–	–	–	–	–	–	500	–	–	2,090	–	–	900
Virginia	–	–	–	–	–	–	–	–	300	–	–	300	–
Washington	–	–	–	–	–	–	–	–	–	–	–	–	–
West Virginia	–	–	–	–	142	500	–	–	–	–	–	–	–
Wisconsin	–	–	–	143	–	500	–	100	–	5,500	–	–	–
Wyoming	–	–	–	–	–	–	–	–	–	–	–	–	–
Total	348	573	593	1,343	1,492	9,204	4,336	200	2,024	7,590	1,000	3,556	6,728

Grant Name Abbreviations

RFA = Respite for Adults
RFC = Respite for Children
CTAC = Community Treatment Alternatives for Children
FTF = Family to Family Health Care Information and Education Center
QA/QI = Quality Assurance and Quality Improvement in Home and Community-Based Services
LIFE = Living with Independence, Freedom, and Equality Accounts Feasibility and Demonstration
REBAL = Rebalancing Initiative
CSR = Comprehensive Systems Reform
EPSDT = Portals from EPSDT to Adult Supports
MHST = Mental Health: Systems Transformation
HOUSE = Integrating Long-Term Supports with Affordable Housing

Table notes: All figures are rounded to nearest thousand dollar. This table does not include grants for national technical assistance centers or for aging and disability resource centers.

^aFamily to Family Health Care Information and Education Center Grants were available to nonprofit organizations, not state agencies.

^bThis grant was awarded to a university, not a state agency.

Appendix B

Publications of the Formative Evaluation of the CMS Systems Change Grants for Community Living Program—FY 2001 to FY 2004

I. Summaries of Grant Initiatives

Summaries of the Systems Change Grants for Community Living—FY 2001 Grantees

This document provides a 6- to 8-page summary of the grant applications of each FY 2001 Systems Change Grantee. Grants are grouped into the following categories: Community-Integrated Personal Assistance Services and Supports, Nursing Facility Transition, and Real Choice for Systems Change.
Available at: http://www.hcbs.org/moreInfo.php/doc/172.

Summaries of the Systems Change Grants for Community Living—FY 2002 Grantees

This document provides a 6- to 8-page summary of the grant applications of each FY 2002 Systems Change Grantee. Grants are grouped into the following categories: Community-Integrated Personal Assistance Services and Supports, Nursing Facility Transition, and Real Choice for Systems Change.
Available at: http://www.hcbs.org/moreInfo.php/doc/164.

Summaries of the Systems Change Grants for Community Living—FY 2003 Grantees

This document provides a 6- to 8-page summary of the grant applications for each FY 2003 Research and Development Grantee. The 48 grants are grouped into the following categories: Community-Integrated Personal Assistance Services and Supports Grants, Independence Plus Initiative, Money Follows the Person, Rebalancing Initiative, and Quality Assurance and Quality Improvement in Home and Community-Based Services.
Available at: http://www.hcbs.org/moreInfo.php/doc/719.

Summaries of the Systems Change Grants for Community Living—FY 2004 Grantees

This document provides a 6- to 8-page summary of the grant applications for each FY 2004 Research and Development Grantee.⁴ The 39 grants are grouped into the following categories: Mental Health Systems Transformation, Quality Assurance and Quality Improvement in Home and Community-Based Services, Integrating Long-Term Supports with Affordable Housing, Rebalancing Initiative, Portals from EPSDT to Adult Supports, and Comprehensive Systems Reform.
Available at: http://www.hcbs.org/moreInfo.php/doc/1224.

II. Compendiums

Real Choice Systems Change Grants Compendium: Fifth Edition

The Compendium contains basic information about each of the Systems Change Grantees. It is divided into sections corresponding to the different types of grants and year of award. Each section is arranged alphabetically by state. Information for each grant includes the name of the grantee organization, the title of the grant, the type of grant, the amount awarded and fiscal year awarded, the primary contacts for each grant, the target populations to be served under the grant, the primary goals and activities of each grant project, and a brief description of the grant activities. The fifth edition of the Compendium replaces all previous editions and includes the 2001, 2002, 2003, and 2004 Grantees.⁵
Available at: http://www.hcbs.org/moreInfo.php/doc/1550.

III. Comparative Analyses

Goals, Objectives, and Activities: Comparative Analysis of FY 2001 Systems Change Grantees

This initial report provides a cross-sectional analysis of the FY 2001 Systems Change Grantees. It compares and contrasts their goals and planned activities as identified in their Grant applications submitted to CMS. It summarizes the goals of the 52 FY 2001 Systems Change Grantees and provides representative examples of their grant activities. The report also includes an overview of Grantees' views of the strengths of their long-term care systems, as well as the challenges they face in creating consumer responsive systems.
Available at: http://www.hcbs.org/moreInfo.php/doc/717.

Partnership Development Activities: Comparative Analysis of FY 2001 Systems Change Grantees

This report summarizes the partnership development activities undertaken by a sample of the FY 2001 Grantees. It describes how Grantees involved consumers and public and private partners in the development of grant applications and their plans for involving them in grant implementation activities. The report also includes a more in-depth description of partnership involvement for nine Grantees (three from each grant type), focusing in particular on how consumers were involved in and perceived the grant development process.
Available at: http://www.hcbs.org/moreInfo.php/doc/718.

IV. Annual Reports

Real Choice Systems Change Grant Program: First Year Report

This report summarizes findings from the Year One annual reports of the 52 FY 2001 Systems Change Grantees, using information provided by the Grantees during the reporting period October 1, 2001, to September 30, 2002. It describes the progress made by Grantees in several key areas of systems change and illustrates the type and range of activities Grantees undertook in the first year of their grants.
Available at: http://www.hcbs.org/moreInfo.php/doc/1865.

Real Choice Systems Change Grant Program: Second Year Report

This report summarizes findings from the Year One annual reports of the 49 FY 2002 Systems Change Grantees and the Year Two annual reports of the 52 FY 2001 Grantees, using information provided by the Grantees during the reporting period October 1, 2002, to September 30, 2003. It presents examples of Grantees' activities in eight areas of systems change: access, workforce, quality, self-direction, service creation/modification, state coordination and planning, state budgeting, and finance.
Available at: http://www.hcbs.org/moreInfo.php/doc/983.

Real Choice Systems Change Grant Program: Third Year Report

This report describes the FY 2002 and FY 2003 Grantees' accomplishments and progress using information provided during the reporting period October 1, 2003, to September 30, 2004. The report summarizes findings from the Year Two annual reports of the 49 FY 2002 Systems Change Grantees and the Year One annual reports of the 48 FY 2003 Grantees. Data from the 9 FY 2003 Family to Family Health Care Information Center Grantees' Year One annual reports and the 16 FY 2003 Feasibility Grantees' Year One annual reports were also analyzed and included. The report presents examples of Grantees' activities in four areas of systems change: (1) access to long-term services and supports; (2) services, supports, and housing; (3) administrative and monitoring infrastructure; and (4) long-term services and supports workforce. For each of the focus areas the report describes Grantees' accomplishments, illustrates the challenges, and discusses consumers' roles in the implementation and evaluation of activities.
Available at: http://www.hcbs.org/moreInfo.php/doc/1363.

Real Choice Systems Change Grant Program: Fourth Year Report

This report describes the FY 2003 and FY 2004 Grantees' accomplishments and progress, using information provided by the Grantees during the reporting period October 1, 2004, to September 30, 2005. The report summarizes findings from the Year Two annual reports of 48 FY 2003 Grantees, the Year One annual reports of 42 FY 2004 Grantees, and the Year Two and Year One annual reports of the 9 FY 2003 and 10 FY 2004 Family to Family Health Care Information Center Grantees, respectively. Data from the 16 FY 2003 Feasibility Grantees' Year Two annual reports were also analyzed and included. The report describes grant activities in three major long-term care systems areas: (1) access to long-term services and supports; (2) services, supports, and housing; and (3) administrative and monitoring infrastructure. For each of the focus areas the report describes Grantees' accomplishments, illustrates the challenges, and discusses consumers' roles in the implementation and evaluation of activities.
Available at: http://www.hcbs.org/moreInfo.php/doc/1668.

Real Choice Systems Change Grant Program: Fifth Year Report

This report describes the 52 FY 2004 Grantees' accomplishments and progress, using information provided by the Grantees during the reporting period October 1, 2005, to September 30, 2006. The report summarizes findings from the Year Two annual reports in three major long-term care (LTC) systems areas: (1) access to LTC services and supports; (2) services, supports, and housing; and (3) administrative and monitoring infrastructure. The report also provides illustrative examples of the challenges Grantees have faced as they implement grant activities, and consumers' roles in the implementation and evaluation of these activities.
Available at: http://www.hcbs.org/moreInfo.php/doc/1935.

V. Final Reports

Real Choice Systems Change Grant Program: FY 2001 Nursing Facility Transition Grantees: Final Report

This report is the first in a series of final reports describing the outcomes of the Real Choice Systems Change Grants. The principal sources of data for this report are Grantees' semi-annual, annual, and final reports; a 2005 topic paper on the FY 2001 and 2002 Nursing Facility Transition Grantees; and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. It provides an overview of 17 Nursing Facility Transition (NFT) Grantees' initiatives to either establish or improve nursing facility transition programs or to help develop some components of an NFT infrastructure. The report includes lessons learned and recommendations that can guide states that are undertaking similar initiatives. This report was referenced on page 48 of CMS Money Follows the Person Demonstration Solicitation Document.
Available at: http://www.hcbs.org/moreInfo.php/doc/1678.

Real Choice Systems Change Grant Program: FY 2001 Community-Integrated Personal Assistance Services and Supports Grantees and Real Choice Grantees: Final Report

This report is the second in a series of final reports describing the outcomes of the Real Choice Systems Change grants. The principal sources of data for this report were Grantees' semi-annual, annual, and final reports; RTI-produced topic papers; and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. It provides an overview of 35 states' initiatives to improve their LTC systems and includes lessons learned and recommendations that can guide states that are undertaking similar initiatives.
Available at: http://www.hcbs.org/moreInfo.php/doc/1891.

Real Choice Systems Change Grant Program: FY 2002 Nursing Facility Transition Grantees: Final Report

This report is the third in a series of final reports describing the outcomes of the Real Choice Systems Change grants. The principal sources of data for this report were Grantees' semi-annual, annual, and final reports; a 2005 topic paper on the FY 2001 and 2002 Nursing Facility Transition (NFT) Grantees; and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. The report describes the enduring changes brought about by 16 NFT Grantees who either established or improved nursing facility transition programs or helped to develop some components of an NFT infrastructure. The report includes lessons learned and recommendations that can guide states that are undertaking similar initiatives.
Available at: http://www.hcbs.org/moreInfo.php/doc/2060.

Real Choice Systems Change Grant Program: FY 2002 Real Choice Grantees and Community-Integrated Personal Assistance Services and Supports Grantees: Final Report

This report is the fourth in a series of final reports describing the outcomes of the Real Choice Systems Change grants. The principal sources of data for this report were Grantees' semi-annual, annual, and final reports; RTI-produced topic papers; and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. It provides an overview of 33 states' initiatives (FY 2002 Community-Integrated Personal Assistance Services and Supports Grantees and Real Choice Grantees) to improve their LTC systems and the enduring improvements achieved. It includes lessons learned and recommendations that can guide states that are undertaking similar initiatives.
Available at: http://www.hcbs.org/moreInfo.php/doc/2172.

Real Choice Systems Change Grant Program: FY 2003 Grantees: Final Report

This report is the fifth in a series of final reports describing the outcomes of the Real Choice Systems Change grants. The principal sources of data for this report were Grantees' semi-annual, annual, and final reports; RTI-produced topic papers; and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. It provides an overview of 73 FY 2003 Grantees' initiatives to improve their states' LTC systems and the enduring improvements achieved. It includes lessons learned and recommendations that can guide states that are undertaking similar initiatives.
Available at: http://www.hcbs.org/moreInfo.php/doc/2675.

Real Choice Systems Change Grant Program: FY 2004 Grantees: Final Report

This report is the last in a series of final reports describing the outcomes of the Real Choice Systems Change grants. The principal sources of data for this report were Grantees' semi-annual, annual, and final reports, RTI-produced topic papers, and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. It provides an overview of 52 FY 2004 Grantees' initiatives to improve their LTC systems and the enduring improvements achieved. It includes lessons learned and recommendations that can guide states that are undertaking similar initiatives.
Available at: http://www.hcbs.org/ under Source: RTI-Systems Change Evaluation [forthcoming in fall 2009].

VI. Topic Papers

Real Choice Systems Change Grant Program: Direct Service Workforce Activities of the Systems Change Grantees

This report describes the workforce initiatives of 20 FY 2001 Grantees, with an in-depth look at the activities of seven Grantees. Their activities focused on five types of workforce initiatives: (1) recruitment efforts; (2) extrinsic rewards, such as wage improvements and health benefits; (3) training and career ladders; (4) changes in culture; and (5) systems administration and planning. The report identifies promising initiatives that merit further evaluation by CMS and states.
Available at: http://www.hcbs.org/moreInfo.php/doc/716.

Real Choice Systems Change Grant Program: Nursing Facility Transition Initiatives of the Fiscal Year 2001 and 2002 Grantees: Progress and Challenges

This report provides an overview of the Nursing Facility Transition (NFT) initiatives implemented by 18 of the FY 2001 and FY 2002 Systems Change Grantees. It describes their differing approaches to nursing facility diversion and/or transition within a framework of the key steps needed to create NFT programs that are integrated into a state's LTC system. This report also identifies the transition challenges and policy issues facing states and Independent Living Centers, discusses lessons learned from grant initiatives, and recommends programmatic and policy changes needed to support transitions.
Available at: http://www.hcbs.org/moreInfo.php/doc/1308.

Real Choice Systems Change Grant Program: Consumer Direction Initiatives of the FY 2001 and 2002 Grantees: Progress and Challenges

This paper describes the activities of 11 FY 2001 and FY 2002 Grantees that used their grants to increase consumer-directed service options. The paper discusses program and policy issues the Grantees encountered while implementing their consumer-direction initiatives and, in particular, how Grantees addressed them. The paper provides information that states and stakeholders will find useful when planning or implementing consumer direction initiatives, whether through solely state-funded programs or the Medicaid program.
Available at: http://www.hcbs.org/moreInfo.php/doc/1601.

Real Choice Systems Change Grant Program: Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees

This report describes the activities of 19 Grantees funded in FY 2003 and FY 2004 by CMS and 6 Grantees funded in FY 2002 by the Maternal and Child Health Bureau to establish Family to Family Health Information Centers, which assist families of children with special health care needs. This paper describes grant implementation challenges and accomplishments, and provides information that states and stakeholders will find useful when planning or implementing similar initiatives.
Available at: http://www.hcbs.org/moreInfo.php/doc/1570.

Real Choice Systems Change Grant Program: Money Follows the Person Initiatives of the Systems Change Grantees

This report highlights the work of nine Money Follows the Person Grantees, with a focus on Texas and Wisconsin. The report describes the initiatives, and discusses policy and design factors states should consider when developing Money Follows the Person programs, including (1) developing legislation and budget mechanisms for transferring funds, (2) ensuring availability of services and housing, (3) identifying individuals who want to transition, (4) developing nursing facility transition infrastructure, and (5) providing quality assurance and monitoring.
Available at: http://www.hcbs.org/moreInfo.php/doc/1667.

Real Choice Systems Change Grant Program: Increasing Options for Self-Directed Services: Initiatives of the FY 2003 Independence Plus Grantees

This report describes the activities of 12 Grantees that received Independence Plus grants in FY 2003 and used them to increase self-directed services options for persons of all ages with disabilities or chronic illnesses. Grantees encountered a range of issues while implementing the grant projects. This report provides information for states and stakeholders planning, implementing, or expanding self-direction programs, whether through solely state-funded programs or the Medicaid program.
Available at: http://www.hcbs.org/moreInfo.php/doc/2134.

Real Choice Systems Change Grant Program: Improving Quality Assurance/Quality Improvement Systems for Home and Community-Based Services: Experience of the FY 2003 and FY 2004 Grantees

The purpose of this report is to inform the efforts of states that are trying to develop and improve Quality Assurance/Quality Improvement (QA/QI) systems by describing and analyzing how selected Systems Change Grantees went through this process. Nine out of the 28 states with QA/QI grants were selected for detailed analyses for this report, which focused on their efforts in six areas: administrative technology and information technology, designing service standards, discovery, remediation, workforce, and the provision of public information.
Available at: http://www.hcbs.org/moreInfo.php/doc/2397.

Real Choice Systems Change Grant Program: Enduring Changes of the FY 2001 and FY 2002 Nursing Facility Transition Grantees

This publication provides a summary overview of the accomplishments and enduring changes brought about by all of the Systems Change Nursing Facility Transition Grantees Despite bringing about many enduring systems improvements, Grantees reported that many transition barriers remain. Grantees made recommendations to help states address continuing barriers to nursing facility transition and diversion so that no one need live in a nursing home simply because sufficient community services and supports are unavailable.
Available at: http://www.hcbs.org/moreInfo.php/doc/2353.

Real Choice Systems Change Grant Program: Initiatives of the FY 2004 Mental Health Systems Transformation Grantees

This publication describes the activities of the 12 Grantees that received Mental Health Systems Transformation grants in FY 2004. These grants focused on increasing the use of evidence-based and recovery-oriented practices in states' mental health services systems. The report discusses the challenges Grantees faced and how they addressed them, and describes their accomplishments and the enduring systems improvements they made. The report provides information that will be useful for states and stakeholders planning, implementing, or expanding similar initiatives.
Available at: http://www.hcbs.org/moreInfo.php/doc/2674.

Real Choice Systems Change Grant Program: Why Are Nursing Home Utilization Rates Declining?

A major goal of the Systems Change grants was to help states to better balance expenditures between nursing homes and home and community-based services. This publication analyzes factors related to the recent decrease in the U.S. nursing home utilization rate. Secondary data on expenditures and per capita use of nursing homes, assisted living, and home and community-based services; as well as demographics for each state; were compared to understand changes in nursing home use in individual years and from 1995-2007. Eight interviews were conducted with states to inform the analyses to help states understand the national decrease in the nursing home use rate.
Available at: http://www.hcbs.org/ under Source: RTI-Systems Change Evaluation [forthcoming in fall 2009].

Endnotes

¹ Henry J. Kaiser Family Foundation. (2007). Views About the Quality of Long-Term Care Services in the United States. Washington, DC: Foundation. Available at: http://www.kff.org/kaiserpolls/7718.cfm.

² Burwell, B., Sredl, K., and Eiken, S. (2008). Medicaid Long-Term Care Expenditures in FY 2007. New York: Thomson Reuters Healthcare. Available at: http://www.hcbs.org/files/145/7230/2007LTCExpenditures.doc.

For persons with developmental disabilities, HCBS spending is now higher than spending for intermediate care facilities in virtually all states. Eiken, S., and Burwell, B. (2008). Medicaid HCBS waiver Expenditures: FY 2002 through FY 2007. New York: Thomson Reuters Healthcare. Available at: http://www.hcbs.org/files/145/7234/HCBSWaivers2007.doc.

³ Most FY 2001 and FY 2002 Real Choice grants were between $1.1 and $2 million dollars; two FY 2004 Comprehensive Systems Reform grants were awarded: $2 million to Vermont and $5.5 million to Wisconsin. See complete listing of grant awards in Appendix A.

⁴ Michigan's Mental Health Systems Transformation Grant is not included in the Summaries because the grant had not yet been awarded at the time the Summaries were prepared.

⁵ The 5^th Edition also includes grants awarded in FY 2005 but not included in RTI's formative evaluation contract.