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Cover page graphic: Real Choice Systems Change Grant 5th Year Rpt: October 1, 2005 - September 30, 2006 Final Report.  U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, May 2007


May 2007

Real Choice Systems Change Grant Program

Fifth Year Report

Progress and Challenges of the FY 2004 Grantees
(October 1, 2005 – September 30, 2006)

Angela M. Greene, M.B.A., M.S.
Janet O'Keeffe, Dr.P.H., R.N.
Wayne Anderson, Ph.D.
Edith Walsh, Ph.D.
David Brown, M.S.

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

Contract Number HHSM-500-2004-00055C
RTI Project Number 0209359.003.002


*RTI International is a trade name of Research Triangle Institute.


Table of Contents

Executive Summary

Section 1. Introduction

     Overview of Systems Change Grants
          FY 2004 Grantees
     Organization of This Report

Section 2. Methods

     Data Sources
     Technical Approach
     Limitations of Approach

Section 3. Grant Initiatives

     Improve Access to Currently Available Services
          Increase Knowledge of Service Options
          Integrate Access Points to Long-Term Care Systems
          Other Initiatives to Increase Access
     Improve or Create New Services, Supports, and Housing
          Personal Assistance Services and Supports
          Nursing Facility Transition/Diversion
          Housing
          Mental Health Services
     Design, Implement, and Maintain Systems and Processes that Enable and Support Home and Community Services
          Quality Monitoring and Management
          Budgeting and Reimbursement Systems

Section 4. Grantee Challenges

Section 5. Consumer Involvement in Systems Change Activities

     Consumer Involvement in Implementation Activities

Section 6. Next Steps

Appendix A. State Awards by Grant Type and Total Award Amount, FY 2004

Appendix B. Lead Agencies Receiving Grants, by State (FY 2001–FY 2004 Grantees)

Appendix C. Sources of Information About Systems Change Grants

Appendix D. Endnotes


Exhibits

1. Number of Systems Change Grants Awarded, by Grant Type
2. Number of States with Activities to Improve Access to Currently Available Services
3. Number of States with Activities to Improve or Create New Services, Supports, and Housing
4. Number of States with Types of Housing-Related Activities
5. Number of States with Initiatives to Improve Mental Health Systems
6. Number of States with Activities Related to Quality Monitoring and Management
7. Consumer Involvement in Systems Change Activities
8. Reports for the Systems Change Grants Program

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EXECUTIVE SUMMARY

Many states have been working for more than 20 years to create long-term care (LTC) systems that enable individuals with disabilities or long-term illnesses to live in their own homes or in other residential settings and to have more control over the services they receive. The Americans with Disabilities Act and the 1999 Supreme Court decision in Olmstead v. L.C. both reinforced states’ ongoing efforts by giving legal backing to this policy direction. Despite the increasing availability of home and community services in virtually all states, Medicaid spending for home and community-based services continues to be significantly lower than for institutional care.

Recognizing the difficult challenges facing states in their efforts to fulfill their responsibilities under the ADA, Congress appropriated funds for Systems Change Grants as part of President George W. Bush’s New Freedom Initiative. These grants were funded each fiscal year from FY 2001 to FY 2007. Since the inception of the Systems Change Grants for Community Living grant program, the Centers for Medicare & Medicaid Services (CMS) has awarded approximately $280 million in grant funding to 50 states, the District of Columbia, and two U.S. territories and Independent Living Centers. During the six funding cycles, 287 grants—not including technical assistance grants—have been awarded. These grants are intended to help states and other entities build the infrastructure that will lead to enduring improvements in home and community services and long-term support systems that enable individuals of all ages to (1) live in the most integrated community setting suited to their needs, (2) have meaningful choices about their living arrangements, and (3) exercise more control over their services.

Grantees that received funding in FY 2001 and FY 2002 have completed their grant projects, and those that received funding in FY 2003 will be completing theirs in the coming months.

As with virtually all grants awarded in prior fiscal years, CMS anticipates that many, if not most, of the FY 2004 Grantees will request 1-year no-cost extensions and will submit their final reports to CMS in December 2008. This report describes the FY 2004 Grantees’ accomplishments and progress, using information provided by the Grantees during the reporting period October 1, 2005, to September 30, 2006 (Year Two of the grant period for FY 2004 Grantees). The report describes grant activities in three major LTC systems areas:

We further divided Grantees’ accomplishments into categories and subcategories to capture the range of activities being undertaken by Grantees. 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.

The principal sources of data for this report were the Year Two annual reports of the 52 FY 2004 Grantees (see Exhibit ES-1 for breakdown, by grant type). The reports were submitted electronically using a web-based reporting system.

Exhibit ES-1. Number of Systems Change Grants Awarded, by Grant Type
Grant Type FY 2004
Quality Assurance/Quality Improvement (QA/QI)   9
Portals from EPSDT to Adult Supports (EPSDT)   2
Integrating Long Term Supports with Affordable Housing (HOUSING)   8
Mental Health Systems Transformation (MHST) 12
Comprehensive Systems Reform Effort (CSR)   2
Family to Family Health Care Information and Education Centers (FHIC) 10
Rebalancing Initiative (REBAL)   7
LIFE Accounts Feasibility and Demonstration (LIFE)   2
Total 52

Information contained in this report is subject to the limitations of the data and the technical approach used. Specifically, the content of this report depends on both the quality and thoroughness of the information provided in each Grantee’s annual report.

Because some Grantees’ activities span more than one systems area, RTI exercised judgment in assigning activities to a particular area and categories within these areas. Further, during the analysis, RTI similarly exercised judgment to determine the key activities and issues to highlight in this report. Staff also eliminated duplicative information and prepared concise summaries of Grantees’ activities and accomplishments. Consequently, descriptions of activities may not contain some information that individual Grantees consider important.

Additionally, this report covers only 1 year of grant activities. Therefore, Grantees may not have reported on the full range of activities being implemented if they had not been initiated during the reporting period.

Grant Initiatives

A majority of Grantees made progress in at least one of the three major systems change areas during the reporting period. Grantees in several states are trying to increase access to LTC supports and services, primarily by increasing consumers’ knowledge of available services. A majority of Grantees also have initiatives under way to improve LTC services, supports, and housing, including efforts related to personal assistance services; for example, increasing options for consumer-directed personal assistance services. Grantees in several states are also developing the administrative and monitoring infrastructure needed to support home and community services; for example, creating new data systems and quality monitoring processes.

Improve Access to Available Services

Grantees in 14 states reported activities to provide or increase access to existing LTC services and supports. Their initiatives included efforts to improve access by (1) increasing consumers’ knowledge of existing service options; (2) integrating information sources for multiple LTC services and supports; and (3) other related activities, including the development of new screening and assessment instruments to enhance access to Medicaid services, and the development of a new statewide transportation system for persons with mental and developmental disabilities.

Several Grantees are improving access to long-term services and supports by providing outreach and education to consumers to increase their knowledge of service options. A few Grantees have initiatives to integrate access to the full range of LTC services, including efforts to create single point of entry systems and to develop an integrated care organization to serve frail, vulnerable, and chronically ill elderly persons and individuals with disabilities.

For example, some are focusing their efforts on specific populations, such as the 10 Family to Family Health Care Education and Information Center Grantees that are providing information about navigating the health and LTC systems to families of children and youth with special health care needs.

Tennessee developed a new comprehensive client-assessment instrument and implementation process. The new instrument has been pilot tested in 30 nursing facilities to assess its functionality and reliability. The purpose of the instrument, which is being revised to reflect current Medicaid rules, is to increase access to home and community services for persons in nursing facilities.

Improve or Create New Services, Supports, and Housing

Grantees in 22 states reported accomplishments in their efforts to address issues related to a lack of LTC services and supports, and housing. These initiatives are grouped into five broad categories: (1) personal assistance services and supports, (2) nursing facility transition and diversion, (3) housing, (4) mental health services, and (5) other efforts to modify or improve services, supports, and housing.

Grantees in a few states reported accomplishments related to personal assistance services and supports. These Grantees are developing opportunities for consumers to direct their own services by developing a systems infrastructure to support consumer direction. For example, New Hampshire is developing a Living with Independence, Freedom, and Equity (LIFE) accounts savings program that will allow persons with disabilities to use savings from their personal care services to purchase equipment or make home modifications that promote independence. They are also developing an implementation plan to be used in the event that Congress passes legislation authorizing the implementation of LIFE accounts.

Grantees in a few states reported progress on activities to incorporate person-centered planning into service planning. They are primarily involved in educating consumers and providers, designing and implementing person-centered planning pilot projects, and developing strategic plans for incorporating the concept into service delivery. Grantees in a few states have initiatives to improve existing services or create new ones. These Grantees are targeting special populations, such as children in foster care, persons who transition from intermediate care facilities for persons with mental retardation (ICFs/MR), and children and youth with special health care needs. For example, Nebraska is working to determine the feasibility and cost of having a transition clinic for youth with special needs who are transitioning to adult services and providing it as a waiver service.

Although not the primary focus of the FY 2004 Grantees, a few are involved in nursing facility or ICF/MR transition and diversion initiatives. They have a range of activities, including transitioning 848 individuals to the community, downsizing facilities, and developing strategies to support transition and diversion activities. For example, Louisiana developed a downsizing plan to close a public 250-bed ICF/MR and relocate individuals to a small privately owned community facility. The plan was supported with funding from the state legislature and Social Services Block Grant funds.

The lack of affordable and accessible housing is a major barrier to community living. Consequently, in FY 2004, CMS awarded eight Integrating Long Term Supports with Affordable Housing grants to assist states in their efforts to remove barriers that prevent Medicaid-eligible individuals of all ages with disabilities from residing in the community or in the housing arrangement of their choice.

The Grantees vary considerably in their approaches. Most focus on improving access to new or existing housing or coordinating the processes of obtaining housing and services to ensure timely access to both. A few are developing or expanding new options for housing or developing housing registries, and a few are undertaking other activities, such as increasing the availability of housing-related assistive technology, and implementing universal design standards.

For example, North Carolina, as part of its effort to develop an infrastructure for cross-agency collaboration within both the disability services system and the affordable housing system, has established 23 Local Housing Support Committees to refer persons with disabilities to Low Income Housing Tax Credit (LIHTC) units and to respond to service needs. Grant staff also developed a guide targeted to housing providers to help them understand the housing needs of persons with disabilities and conducted training on this topic for all of the Housing Support Committees as well as groups of local mental health providers. The guide, which is in its second printing, is being widely used across the State by property managers, consumers, advocates, and service providers. It is also posted on NC Housing Coalition’s website (www.nchousing.org).

CMS awarded Mental Health Systems Transformation grants to 12 states in FY 2004. These grants are intended to help states improve their ability to offer evidence-based and recovery-oriented services to consumers with mental illnesses through the Medicaid system. Grantees in six states reported accomplishments in their efforts to increase the availability of recovery-oriented services. Most are also working to strengthen the consumer’s role in system and community agency governance, decision making, planning, and service delivery and to facilitate collaboration between the mental health and Medicaid systems. For example, Oregon has increased consumer participation at all levels of service and policy design, implementation, and oversight. Consumers who serve on the Evidence-Based Practices (EBP) implementation groups, and those on mental health advisory boards and the Mental Health Association of Oregon board, have contributed to the adoption of peer-operated services within Oregon’s mental health system; they have also influenced the incorporation of peer-delivered services goals within the Block Grant.

Grantees in eight states have initiatives to increase the availability of evidence-based practices in their states’ mental health systems. For example, Oregon has developed a compendium of peer-delivered services with an evidence base, which is being used to inform program decisions about service expansion, and, by the Addictions and Mental Health Division Evidence-Based Practice Committee, to clarify the nature and scope of peer-delivered services.

Virginia developed consensus statements on implementing the evidence-based practices of Supported Employment and Illness Management and Recovery, which were approved by the Department of Medical Assistance; the Department of Rehabilitation Services; and the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS).

Design, Implement, and Maintain Systems and Processes that Enable and Support Home and Community Services

Grantees in most states reported initiatives to improve quality monitoring and management systems, which are grouped into four broad categories: (1) systems improvement; (2) addition of a consumer-focused component to quality monitoring processes; (3) development of, or improvements to, remediation systems or processes; and (4) other initiatives to improve the quality of LTC community services and supports.

Many Grantees continue to take advantage of state restructuring efforts to develop new, integrated Quality Assurance/Quality Improvement (QA/QI) systems and to develop cross-agency awareness of continuous quality improvement practices. Some are also developing training programs for their staff and for provider agency staff to help them understand these new QA/QI practices. For example, grant staff in Arkansas are developing an automated comprehensive quality monitoring system for the State’s waiver programs. They are reviewing the State’s existing data collection systems and collaborating with the State’s Systems Transformation Grantee on system design to support future development, analysis, and dissemination of quality management reports.

A frequently expressed concern about quality assurance systems is their lack of a consumer focus and their failure to measure outcomes that are important to consumers. Grantees in nine states are continuing to address this concern in a number of ways. Many have organized state- and local-level quality councils comprising consumers, families, and other stakeholders to guide QA/QI activities. Several Grantees provided training on quality topics to consumers, providers, and other stakeholders and elicited their input. Florida held a day-long symposium on quality topics for consumers, family members, and other stakeholders, which had more than 250 participants. The Grantee’s goal is to establish capacity in each district to provide education and training to consumers and family members and to help them to identify service needs and evaluate service success.

Grantees are also implementing surveys to assess quality from the consumer perspective. Arizona developed a consumer survey, trained interviewers, and piloted a consumer-to-consumer interview process. The goal of this process is to obtain feedback directly from consumers about the quality of in-home respite, attendant care, and habilitation services. Five individuals with disabilities and five family members have been trained as interviewers.

Grantees in a few states reported activities to change their budgeting and reimbursement systems. These Grantees are developing changes to accommodate a shift to more integrated delivery systems such as managed care and are developing payment rates or methodologies, which will be used in systems designed to integrate or manage health and/or long-term care services. Wisconsin is developing and implementing strategies to reposition the State’s nursing home industry in light of its transition to managed long-term care under its Family Care program. The Department of Health and Family Services developed acuity-based rates for nursing facility reimbursement and began the transition to the new rates in July 2006.

Challenges

Grantees have made significant progress in initiating and implementing grant activities; however, most have faced challenges in their implementation efforts. These challenges generally are unique to their individual efforts to improve the LTC system in their respective states, such as provider resistance to peer-support services. Some challenges are more general in nature, such as the difficulty Grantees face in involving consumers and stakeholders in their initiatives. Lack of consumer follow-up was a major barrier to the success of Nebraska’s quality improvement pilot program to identify potential polypharmacy issues for individuals receiving LTC services in their home or in an assisted living setting. Of the 21 consumers who received medication reviews provided by a pharmacist, only 1 followed up with her physician.

Grantees also described staffing challenges, provider shortages, and policy and administrative issues, as significant challenges to the success of their initiatives. For example, Oregon faced resistance within the state Medicaid system to changes in service definitions, billing mechanisms, and administrative rules that would allow the provision of assistive technology and other supports to individuals with psychiatric disabilities.

Consumer Involvement

Grantees in virtually all states reported that consumers were actively involved in implementation activities in a variety of ways. They participated in (1) committees and planning meetings; (2) the development and testing of products and outreach materials; (3) pilot programs, focus groups, and surveys; (4) formative and summative evaluation activities, such as developing indicators for a quality management plan; and (5) peer mentoring.

As CMS mandated, Grantees in almost all the states involved consumers or consumer partners on advisory boards, consumer task forces, or advisory committees. Of the more than 1,000 members serving on task forces or advisory committees during the reporting period, about 36 percent were individuals with disabilities and about 15 percent were consumer advocates.

Next Steps

These Grantees are nearing the end of a 3-year grant period (September 2007); however, it is anticipated that many will request no-cost extensions to continue grant activities for a fourth year. As in previous grant years, Grantees will most likely use this extra time to complete activities that had a late start, to evaluate their grants, and to ensure that their initiatives will be sustained after the grant ends. The FY 2004 Grantees have already demonstrated accomplishments in many areas. We anticipate that they will continue to make substantial progress during their third year.

The next series of reports will be final reports of Grantees’ activities, accomplishments, and enduring changes. A final report of the FY 2001 NFT Grantees’ accomplishments was published in summer 2006. A final report of the FY 2001 Community-Integrated Personal Assistance and Supports (CPASS) and Real Choice Grantees’ accomplishments was released in early 2007. RTI will publish a final report of the FY 2002 Grantees’ accomplishments and enduring changes in fall 2007. A final report of the FY 2003 Grantees’ accomplishments will be available in summer 2008, and final reports of the FY 2004 Grantees’ accomplishments will be released in summer 2009. The sources of information for these reports will be Grantees’ final reports to CMS as well as interviews with the grant project directors. These reports will highlight each state’s accomplishments at the end of the grant period and will summarize accomplishments across all the Grantees in specific systems change areas.

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SECTION 1
INTRODUCTION

Historically, services and supports that enable persons with disabilities to live independently in the community have received less public funding than have services provided in institutional settings. Over the past 20 years, many states have addressed this institutional bias and changed their long-term care (LTC) systems to allow people with disabilities or long-term illnesses to receive services in their homes and in community residential settings. The 1999 Supreme Court decision in Olmstead v. L.C. reinforced states’ efforts and gave legal weight to this policy direction. Despite the increase in the availability of home and community services, in virtually all states, Medicaid spending for home and community-based services (HCBS)—HCBS waivers, personal care, and home health services—continues to be significantly lower than for institutional care. In fiscal year (FY) 2005, HCBS accounted for 37 percent of all Medicaid LTC expenditures compared with 63 percent for institutional services, a marginal increase since FY 2004.1

Overview of Systems Change Grants

Changing a state’s LTC system to achieve more balanced spending on institutional care and home and community services is a difficult and complex undertaking requiring the involvement of many public and private entities. Recognizing this, in FY 2001 Congress began funding the Systems Change Grants for Community Living grant program (hereafter Systems Change Grants) to help states increase access to and the availability of home and community-integrated services and to improve the quality of these services. Since September 2001, the Centers for Medicare & Medicaid Services (CMS) has awarded approximately $280 million in Systems Change Grants to 50 states, the District of Columbia, Guam, the Northern Mariana Islands, and Independent Living Centers. In all, 287 grants—not including technical assistance grants—have been awarded during six funding cycles: FY 2001 through FY 2007.

CMS contracted with RTI to prepare annual reports on the progress of grants awarded between FY 2001 and FY 2004 and a final report to document their achievements at the end of the grant. The FY 2005 and FY 2006 Grants differ from previous System Change Grants in their scope. Because they are designed to help states implement major changes in their systems infrastructure to support the continued development of high-quality home and community services options, they are called Systems Transformation grants. These Grantees received more funding than did previous Grantees, which will be expended over a 5-year period. CMS also awarded grants in FY 2005 to 10 family-run organizations to continue the development of Family to Family Health Care Information and Education Centers. Reports of the activities and accomplishments of the FY 2005 and FY 2006 Grantees will be prepared for CMS under a separate contract.

FY 2004 Grantees

The FY 2004 Grantees are the focus of this annual report. Exhibit 1 lists the numbers and types of FY 2004 grants awarded on September 30, 2004.

Exhibit 1. Number of Systems Change Grants Awarded, by Grant Type
Grant Type FY 2004
Quality Assurance/Quality Improvement (QA/QI)   9
Portals from EPSDT to Adult Supports (EPSDT)   2
Integrating Long Term Supports with Affordable Housing (HOUSING)   8
Mental Health Systems Transformation (MHST) 12
Comprehensive Systems Reform Effort (CSR)   2
Family to Family Health Care Information and Education Centers (FHIC) 10
Rebalancing Initiative (REBAL)   7
LIFE Accounts Feasibility and Demonstration (LIFE)   2
Total 52

A summary description of the goals and objectives of the FY 2004 Grantees is available online http://hcbs.org/files/70/3460/2k4Summaries.htm). An overview of their first-year activities and accomplishments is also available (http://hcbs.org/files/96/4771/4thYearAnnualReport.htm). This report—the fifth in a series of annual reports—describes the second-year activities and accomplishments of the FY 2004 Grantees for the reporting period October 1, 2005, to September 30, 2006.

As with virtually all grants awarded in prior fiscal years, CMS anticipates that many, if not most, of the FY 2004 Grantees will request 1-year no-cost extensions and submit their final reports to CMS by December 31, 2008. Once these reports are submitted, RTI will prepare a final report covering the Grantees’ accomplishments and enduring systems improvements.

Organization of This Report

This report has six sections and three appendixes. Section 2 describes the data sources used to prepare the report and the technical approach used to summarize and report the data. Section 3 presents our findings, grouped into three major areas of systems change: (1) initiatives to improve access to currently available services; (2) initiatives to modify, improve, or create new services, supports, and housing; and (3) initiatives to design, implement, and maintain systems and processes that enable and support home and community services (for example, those that support the development of comprehensive quality assurance and quality improvement systems). Section 4 describes challenges Grantees are facing as they work to implement their projects and achieve their goals, and Section 5 summarizes consumers’ involvement in grant implementation and evaluation activities. Section 6 presents the next steps in the reporting process for the FY 2001 through 2004 Systems Change Grants.

Appendix A lists the types of grants awarded in FY 2004 and the total amount awarded to each state. Appendix B identifies the type of grant and the lead agency receiving grants in each state in FY 2001 through FY 2004, and Appendix C identifies sources of additional information about these grants.

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SECTION 2
METHODS

Data Sources

The Year Two annual reports of the 52 FY 2004 Grantees were the principal data sources for this report. Additionally, we reviewed the Grantees’ prior year reports and, for some Grantees, clarified information in their annual reports through e-mail and phone communications.

Technical Approach

Grantees submitted their annual reports on or about October 30, 2006, and the reports were analyzed in the following months. RTI classified Grantees’ activities into three focus areas covering major systems change initiatives. These focus areas are broad enough to encompass the range of activities undertaken by all grant types during the reporting period:

We further divided each focus area into categories and, in some cases, subcategories, to illustrate the Grantees’ range of activities and their accomplishments. For example, the section describing initiatives to modify, improve, or create new services, supports, and housing was broken down into five categories: (1) personal assistance services and supports, (2) nursing facility transition and diversion, (3) housing, (4) mental health services, and (5) other initiatives. The section describing personal assistance services and supports was further divided into three subcategories: (1) consumer direction, (2) person-centered planning, and (3) new or modified services.

After grouping the activities and accomplishments in the FY 2004 Grantees’ annual reports into the three major focus areas, RTI staff then selected examples of Grantee activities to illustrate the type and range of accomplishments during the reporting period and grouped them into the appropriate categories and subcategories.

Limitations of Approach

This report describes the progress Grantees made on their respective initiatives during the reporting period. The description is subject to the limitations of the data and the technical approach used, as follows:

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SECTION 3
GRANT INITIATIVES

This section describes Grantees’ initiatives in three broad areas:

Improve Access to Currently Available Services

Ensuring access to the full range of currently available services and supports for persons of all ages with disabilities is a critical component of a balanced long-term care (LTC) system. A little more than a quarter of the Grantees reported activities to provide or increase access to both new and existing services and supports. As illustrated in Exhibit 2, 14 Grantees have initiatives to improve access, which are organized into three broad categories:

The majority of the Grantees with access initiatives are working to increase knowledge of service options. Their primary goal is to help consumers and their families better navigate the LTC systems and make informed choices about service options. In the following subsections, we present examples of Grantee’s activities and achievements in each of the three categories to illustrate the type and range of initiatives they are undertaking.

Exhibit 2. Number of States with Activities to Improve Access to Currently Available Services
State Increase Knowledge
of Service Options
Integrate Access
Points to LTC Systems
Other
Arizona Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Kentucky Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Louisiana Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Massachusetts Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Mississippi     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
New Mexico Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
New York Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
North Carolina Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Noth Dakota Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Tennessee     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Utah Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Vermont   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
West Virginia Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Wisconsin   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Total 10 3 3

Increase Knowledge of Service Options

Ten Grantees reported activities to increase consumer knowledge to enable informed choices about LTC services and supports options. The activities include presenting educational forums; providing training for case managers as well as consumers; and disseminating information and instructional materials through websites, handbooks, and electronic mailing lists. Most of these Grantees are piloting or implementing specific programs to inform consumers about their service options.

Almost all Grantees are developing informational websites, and some are working directly with provider agencies to help them disseminate program information to eligible participants.

The primary focus of the Family to Family Health Care Information and Education Center Grantees (hereafter, Family Health Information Centers [FHICs]) is to increase access to both appropriate health care and home and community services for families of children and youth with special health care needs (CYSHCN). Several Grantees are trying to improve access to quality medical care for CYSHCN by working with individual practices to promote family-centered, culturally competent care and to develop "medical homes"—a primary care practice in which providers coordinate home and community services and specialty care for CYSHCN. Examples of their activities and achievements follow.

The Arizona GranteeRaising Special Kids—has developed a statewide Family to Family Health Information and Education Center to provide health care education and training for families and professionals. The FHIC has developed health care resource guides for all Arizona counties, which provide contact information for the local offices of agencies that finance and deliver services for families of CYSHCN. Parents provided input for the guides during their development and are helping to distribute them.

The Grantee has also established Neonatal Intensive Care Unit (NICU) parent support programs in three hospitals and has hired a part-time NICU program coordinator to manage and expand the program. In addition to parent-to-parent support, the NICU program provides information about health care resources. The State’s Title V program, which provides some financial support for the NICU program, has committed to developing a video for the NICU support program. The Arizona FHIC also furnished medical home and family support resource training to 96 medical residents at nine hospitals, and to 52 student nurses and 80 physician assistant students. Eighty-six parents participate as "family faculty" in these trainings.

To reach families in underserved rural areas, including Native American reservations, the FHIC developed a health care workshop CD-ROM, which 13 parent-led Community Action Teams will use to educate families in these areas. Staff also collaborated with the Indian Health Service and Federally Qualified Health Centers to develop culturally competent information for Native Americans and worked with two Cultural Competence Committees to develop culturally appropriate materials for Spanish-speaking families.

The Grantee has also worked to educate state policy makers and other stakeholders about CYSHCN. As a result, the State Title V program now requires staff at all four contracted regional specialty clinics serving 23,000 CYSHCN to complete FHIC-provided training about the State’s health care financing and service delivery systems for CYSHCN.

The Kentucky Granteethe Arc of Kentucky—has established a Family to Family Health Care Information and Education Center (hereafter FHIC) to empower families of CYSHCN to make sound choices about services and supports based on accurate up-to-date information. During their second grant year, the FHIC had contact with 3,264 families, and grant staff met with 12 parent groups and 11 provider agencies to share information about services and supports available for CYSHCN. Staff in the FHIC satellite center in Northern Kentucky have also developed a guide with information about resources available in that area, and staff are assisting with the preparation of a statewide resource guide. The Grantee is also collaborating with state agencies and other groups, such as the Kentucky Partnership for Families and Children, the Kentucky Special Parents Network, Family Voices, the Autism Consortium, and the Kentucky Developmental Disabilities Council, to provide information on services for families.

The Louisiana FHICFamily Voices of Louisiana—has contracted with the State’s Road to Recovery contractor to provide Neighborhood Liaison services to Louisiana displaced families with CYSHCN who want to return to New Orleans. The State will fund the FHIC to provide these services after grant funding ends. In addition, the FHIC staff has provided training to State officials on the type of information and services that families will need to enable them to return to New Orleans.

The Massachusetts FHIC—Massachusetts Family Voices, Federation for Children with Special Health Care Needs—has developed a new statewide FHIC to increase the number of families with CYSHCN who receive information about services and supports that enable their children to actively participate in their communities. As an example of how the FHIC is helping to increase access to services, Senator Kennedy’s office twice contacted the FHIC to help determine whether all eligible families were enrolled in the MassHealth Standard/CommonHealth Premium Assistance program. This program provides premium assistance to uninsured adults who qualify, based on the program’s eligibility criteria, to help them purchase health insurance. Using the FHIC’s listserv, staff determined that 46 of 64 respondents were unaware of their eligibility and provided them with information about enrolling.

The FHIC has also conducted training on navigating the Massachusetts public benefits system, understanding the different programs and eligibility criteria, and how to enroll. During the grant’s second year, the FHIC responded to requests for information from 364 families and 95 professionals via phone and e-mail. Information was requested about MassHealth (the State’s Medicaid program), SSI eligibility, dual eligibility benefits under Medicare and Medicaid, the new prescription drug benefit under Medicare Part D, and community resources.

The New Mexico Grantee—Parents Reaching Out—has established a statewide FHIC and provided information, referrals, and assistance to more than 10,000 families, health care professionals, and service providers about eligibility for home and community services. As part of its education initiative, the FHIC conducted 19 training sessions for 248 individuals, including family members, health care professionals, and service providers. Training and workshop topics include an overview of the Developmental Disabilities (DD) Services waiver program, the DD waiver application process, health care benefits, navigating the health care system, and stress management.

The New York FHICParents-to-Parents NYS, Inc.—developed an e-group (an electronic parent-to-parent discussion and support group) for parents of children who are medically fragile to assist them in sharing and obtaining information on services and supports. This e-group is a place where parents across the State can connect and support each one another by providing answers to posted questions and sharing resources. As of the reporting period, 29 parents are participating in the group.

The FHIC also developed an organizational tool for families who have CYSHCN, called a Health Care Notebook. The notebook helps families keep track of appointments, providers, and important information about their child’s health and health history. The notebook is available in hard copy and on the FHIC’s website (http://www.parenttoparentnys.org/Family2Family/Record%20Keeping/recordkeeping.htm). As of the reporting period, 662 people have downloaded the Health Care Notebook.

The North Carolina FHIC—the Exceptional Children’s Assistance Center—is continuing its survey of families to determine their information needs. FHIC staff are also continuing to develop materials and educational curricula to increase the amount of information, education, and training available to help families of CYSHCN meet their children’s needs. A training curriculum and materials about medical homes and transitioning to adult systems of care have been developed for families, and a brochure about the FHIC has been translated into Spanish and is being distributed statewide.

The North Dakota FHIC—Family Voices of North Dakota—has developed a new statewide Family to Family Health Information and Education Center. The FHIC engaged in outreach activities to Native American reservations, military bases, and refugee populations and conducted 14 trainings and workshops throughout the State, including 2 at reservations. The FHIC also developed educational materials such as handouts, brochures, and information packets for families. The Grantee has continued to conduct outreach activities.

The Utah FHICUtah Family Voices at the Utah Parent Center—continued providing technical assistance and training to pediatricians and to family members of CYSHCN who act as "health partners" to disseminate information about the medical homes. Family health partners work with pediatric practices and the FHIC to distribute information to other families of CYSHCN about health care resources and other services and supports.

FHIC staff also continue to identify families to serve as "family faculty" within the pediatric medical residency program and the nurse practitioner program. Trainings provided by "family faculty" have become a part of the core curriculum of the University of Utah School of Medicine Physical Therapy program and, because of the FHIC’s success, will also become part of the Occupational Therapy program within the next year.

The West Virginia FHICPeople’s Advocacy Information and Resources Center—is working to build partnerships with medical organizations to maximize community-based options for families. The FHIC is participating with the Marshall University Pediatrics program through their CARES Project and has written letters of support for two grants on which they are working. The FHIC continues to work with the Osteopathic School and plans to present at an open forum for students in spring 2007.

To build awareness of individual and family-directed supports, FHIC staff conducted 26 training sessions with family members of CYSHCN, 1 training session with the county school systems’ special education administrators, and 2 sessions with all (135) special education school personnel in the same county. The Coordinator also distributed copies of a sample curriculum to be used in health and history classes at the junior and senior high school level. These trainings were designed to promote the philosophy of individual and family-directed supports for CYSHCN.

Integrate Access Points to Long-Term Care Systems

Three Grantees reported on initiatives to improve access by integrating information sources for multiple long-term services and supports. North Dakota (REBAL) is working to increase access and choice for persons 60 years or older and for younger persons with disabilities. The Grantee conducted more than 40 focus groups and personal interviews with consumers, families, and providers to gather information about the need for and potential elements of a statewide single point of entry. Grant staff also surveyed consumers and hospital discharge planners about the development of a single point of entry in North Dakota. Findings from the focus groups, interviews, and survey (http://www.nd.gov/humanservices/info/pubs/ltccontinuum.html) will be used to inform legislation and administrative rules to create a single point of entry mechanism. To inform the development of a uniform assessment and referral tool, grant staff also researched other states’ assessment approaches.

Vermont (CSR) is working to develop a model integrated care organization to serve frail, vulnerable, and chronically ill elderly and physically disabled adults. The Grantee reviewed Medicaid eligibility and claims data for FY 2004 to define the target populations for inclusion in the integrated care organization, which will provide services using an interdisciplinary team and a single care plan. The target groups include those who are (1) dually eligible for Medicaid and Medicare and living in the community and (2) Medicaid-eligible individuals receiving home and community services. The Grantee is considering including nursing home residents in the future.

Wisconsin (CSR) conducted activities to help the Department of Health and Family Services (DHFS) develop and implement a comprehensive statewide plan for reforming the LTC system. The plan includes activities to increase access to home and community services by expanding managed long-term care and integrating LTC services with other health care services to the extent desired by counties, which administer waiver programs. The State Council on LTC Reform, which provides input and guidance for the grant, recommended reforms in 19 areas (e.g., person-centered care planning, opportunities for self-directed care, improving the LTC workforce). The State Council also supported legislative action to increase the percentage of Wisconsin citizens covered by Family Care, the State’s Medicaid managed care program that provides both health and long-term care, from 29 to 50 percent. Currently, waiver and other LTC services in these counties are not part of any managed care delivery system.

Grant staff funded 10 groups comprising county staff and, in some cases, private partners such as ADRCs, to engage in extensive planning and implementation activities to shift the State’s long-term care delivery system from fee-for-service to regional managed care. They also provided funds to one organization and two consultants to help them plan or implement activities to facilitate the transition to a managed LTC system. DHFS provided grant funds to the University of Wisconsin Extension Agency and two private consultants to assist counties in the planning process.

Other Initiatives to Increase Access

Three Grantees described other initiatives to increase access to LTC services and supports, such as increasing the availability of transportation for persons with mental and developmental disabilities, developing new screening and assessment instruments, and providing education on workforce development in county-based managed and integrated LTC systems. Mississippi (REBAL) is developing a model for a statewide coordinated transportation system for persons with mental health and developmental disabilities that will ensure self-directed access to community-based services. The Mississippi Transportation Coalition, which serves as an advisory group for the grant, is designing a needs assessment to identify transportation needs and has also identified 12 issues (e.g., financing, technology, and safety) that need to be addressed in the model system.

Tennessee (REBAL) is working to improve access to home and community services by developing a comprehensive client assessment instrument and implementation process. Grant staff helped pretest the new instrument with staff from 6 nursing facilities and then pilot tested the instrument in 30 nursing facilities to assess its functionality and reliability. The instrument is now being revised to reflect current Medicaid rules.

Wisconsin (CSR) has expanded its dementia early-detection screening pilot to cover 10 counties and conducted training on its use. Grant staff also created an online training module for use when in-person training is not possible. Medical providers have already screened approximately 1,200 people using the new tool. The Grantee—the Wisconsin Department of Health and Family Services—also implemented a functional screen to determine eligibility for children’s LTC services statewide. This screen will allow the Department to closely monitor the consistency of eligibility determinations across the State and to target counties needing training and quality improvement activities.

Grant staff are also working to ensure access to services through the availability of an adequate supply of long-term care workers. As part of the grant’s goal to develop systems and processes to enhance access to and the availability of service options, grant staff conducted a webcast about workforce development in county-based managed and integrated LTC systems. The webcast described how to develop long-term care, and primary and acute care, provider networks for managed LTC systems and how these networks differ from fee-for-service provider networks. The webcasts also highlighted the lessons learned from provider network development in the Family Care program.

Improve or Create New Services, Supports, and Housing

To live independently in the community and exercise meaningful choices about their living situation, persons with disabilities need both accessible and affordable housing and a range of services and supports to avoid increased risk for health problems, secondary disabilities, and nursing home placement. The FY 2004 Grantees have a wide range of initiatives to improve or create new community services and supports. Many are improving existing services and supports by making them more responsive to consumers’ needs. Most are focused on activities related to housing and mental health services. Although CMS did not award nursing facility transition grants in FY 2004, four Grantees have nursing facility transition initiatives.

These initiatives can be grouped into four broad areas, as shown in Exhibit 3:

Exhibit 3. Number of States with Activities to Improve or Create New Services, Supports, and Housing
State Personal Assistance Services and Supports Nursing Facility Transition/Diversion Housing Mental Health Services
Arkansas     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Delaware       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
District of Columbia Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Florida        
Illinois Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Louisiana Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Maine       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Massachusetts       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Michigan       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Minnesota       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Mississippi     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Nebraska Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.      
New Hampshire Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
North Carolina   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
North Dakota Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Ohio       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Oklahoma       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Oregon     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Pennsylvania     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Vermont     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Virginia Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Wisconsin Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Total 8 5 8 12

Examples of Grantees’ initiatives in these four focus areas follow.

Personal Assistance Services and Supports

To live as independently as possible, persons of all ages with disabilities need personal assistance services and supports. Many also want to be able to choose the services they need to carry out everyday activities and to direct these services. Eight Grantees reported progress on their activities to provide or improve personal assistance services and supports.

Consumer Direction

A few Grantees have initiatives to give consumers greater control over the services they receive. For example, New Hampshire (LIFE) is developing a Living with Independence, Freedom, and Equality (LIFE) accounts savings program that will allow persons with disabilities to use savings realized from directing their personal care services to purchase equipment or make home modifications that promote independence. Savings from earnings may also be put in LIFE accounts as can contributions from other persons. Grant staff conducted key informant interviews and focus groups with consumers, families, state program administrators, and provider staff to inform the design of LIFE accounts. They are also serving on the State’s Cash and Counseling work group to inform state policy on LIFE Accounts. The Grantee is also developing an implementation plan to be used in the event that Congress passes legislation authorizing their implementation.

Wisconsin (CSR) is working to ensure that consumer-directed supports are consistently available in community-based LTC programs statewide. Grant staff participated in a Department of Health and Family Services workgroup on self-directed supports, which made recommendations for expanding self-directed services in the managed LTC system. These recommendations included (1) developing a statewide approach to self-directed supports in waiver programs in the counties that have not yet implemented Family Care (a managed care approach to delivering waiver and other long-term care services), and (2) incorporating self-directed supports into the State’s Mental Health/Substance Abuse and Children’s Long Term Support programs.

Person-Centered Planning

A few Grantees have initiatives to incorporate person-centered planning into service planning, which they are accomplishing by providing education, designing and implementing pilot projects, and developing strategic plans for incorporating person-centered planning into service delivery. For example, Virginia (REBAL) is developing person-centered planning pilot projects for consumers transitioning from state training centers to the State’s Mental Retardation waiver. Grant staff and consultants are developing the education materials and processes to promote person-centered planning for these pilot projects.

The Steering Committee for the North Dakota (REBAL) grant developed a draft strategic plan and the key components for a single point of entry to ensure that LTC services for elderly persons and people with disabilities are developed using a person-centered approach. Grant staff conducted focus groups with consumers to obtain information on their needs in order to inform the draft strategic plan and the development of components for the single point of entry.

New, Improved, or Modified Services

Three Grantees have initiatives to improve existing services or create new services. The District of Columbia (EPSDT) is working to examine and refine current mechanisms for identifying and referring children in foster care with mental health issues to ensure that they are referred to appropriate supportive services within and after they leave the foster care system. As part of this initiative, the Grantee established a memorandum of understanding (MOU) among the District of Columbia Department of Mental Health, the Children and Family Services Administration, and the Medical Assistance Administration, which clarifies each agency’s roles and responsibilities for identifying and referring children in foster care with mental health issues to appropriate supportive services.

Grant staff also conducted interviews with 35 individuals in District of Columbia government, interviews with providers, and focus groups with foster care youth. Preliminary findings revealed a critical need for training foster parents and caregivers to address aging-out issues and concerns, and for extensive orientation and training of all service agency staff. Information from social workers and providers who are interacting with the youth, and the youth themselves, made apparent the need for (1) child psychiatrists to work with these youth, (2) an evaluation of whether reimbursements are sufficient to cover mental health services for foster children, and (3) a centralized clinic or facility where youth can obtain medical care 24 hours a day.

Louisiana (REBAL) is developing a model for an Expanded Resource Center to provide additional community supports that may be available but not readily accessible for persons who transition from intermediate care facilities for persons with mental retardation (ICFs/MR) to the community. The Center will provide transition follow-up and limited medical/nursing, dental, therapies, as well as psychological services. The Grantee also has an initiative to develop a transition plan to increase the number of individuals with developmental disabilities who are transitioning. Grant staff collaborated with service providers, families, consumers in large facilities, and other stakeholders to develop a Residential Options waiver. This waiver was designed to support individuals who are transitioning as a result of the State’s policy to downsize large ICFs/MR and improve access to home and community services. The new waiver program, which will be key to the success of the Grantee’s transition plan, will include cost-effective options such as shared supports, group living, live-in caregiver models, and flexible individual supports. The State will submit the new waiver application to CMS in spring 2007.

Nebraska (EPSDT) is working to determine the feasibility and cost of a transition clinic as a waiver service. During the past year, seven youth were seen in the Health Care Transition Clinic developed during the first year of the grant. Grant staff are continuing their outreach activities to service coordinators, schools, and social services program staff to educate them about the special needs of youth with disabilities who are transitioning to adult services. Grant staff have also developed technical materials, including (1) two Clinical Questionnaires, (2) two Transition Health Care Assessments, (3) a clinic flow chart, (4) evaluation surveys, and (5) a brochure with information about the clinic. After the youth’s first visit, clinic staff provided the youth and their families with a written report. Clinic staff have also drafted a Health Care Transition Plan for the second visit for one youth, and staff have been hired to follow up with teens and families to help ensure the transition’s success.

To increase the capacity of physicians and other health care providers to serve youth with disabilities who are transitioning to adult services, grant staff developed a Physicians’ Training Curriculum and Resources Notebook, which includes written materials, videos, a PowerPoint presentation, and website resource lists. These materials can also be used to train medical students and residents. Three physicians on the faculty of the University of Nebraska Medical Center have reviewed the materials and recommended ways to increase faculty and resident involvement in transitioning youth to adult services.

Other Initiatives

Illinois (REBAL) is developing a strategy to meet consumers’ needs and preferences for LTC services. To inform this effort, grant staff conducted 26 focus groups to obtain consumer input. They are also preparing estimates of the proportion of the older adult population with disabilities in specific local communities to help the State develop projections of future utilization rates for home and community services compared with current rates.

Nursing Facility Transition/Diversion

In FY 2001 and FY 2002, CMS awarded Nursing Facility Transition grants (NFT) to 23 state agencies and 10 Independent Living Centers. Most of these Grantees focused exclusively on transition activities, and a few on both transition and diversion, which are discussed in other reports.2 Although not the primary focus of their grants, a few FY 2004 Grantees have nursing facility or ICF-MR transition or diversion initiatives.

Grantees in five states described a broad range of activities, including transitioning 848 individuals to the community, developing facility downsizing initiatives, and developing strategies or processes to support transition or diversion activities. Examples of these activities follow.

Illinois (REBAL) grant staff, as part of its effort to conduct an inventory of services and housing to support nursing facility transitions, developed an Issue Brief regarding the roles and responsibilities of community service providers in the nursing home transition process. The Issue Brief is informing efforts to reform the State’s pre-admission process; specifically, members of the State’s General Assembly have introduced an amendment to the current law on nursing home admission, requiring that authorizations for first-time nursing home admissions following hospital discharge be conditional and expire after 28 days. This policy would help to ensure that nursing home residents are reassessed in a timely fashion to determine whether they need to remain in the facility.

Louisiana (REBAL) is developing a plan to increase the number of individuals with developmental disabilities who are transitioning to the community. To support this initiative, grant staff developed a downsizing plan to close a public 250-bed ICF/MR and relocate residents to small privately owned community facilities. The downsizing plan included provisions for reallocating professional staff (medical, nursing, therapies, psychology) to provide transition assistance and direct services. The plan was supported with $12 million from the legislature and $7 million in Social Services Block Grant funds. Grant staff have also helped to develop downsizing plans for four large private ICFs/MR, which will reduce the State’s large-facility bed capacity by one-third (approximately 400 people). As part of these initiatives, grant staff helped to transition 72 individuals.

Grant staff are also working to enhance community services and supports for persons with developmental disabilities by educating providers and consumers on available community options. Grant staff participated in a workgroup sponsored by the Office for Citizens with Developmental Disabilities that is revising the State’s ICFs/MR transition manual. The revisions were necessitated by the consolidation of the State’s agency administrative functions, which made major changes in the transition process and improvements in the State’s quality management systems. To inform the revision, grant staff conducted a focus group to identify transition needs and also participated in three large stakeholder meetings in different areas of the State to discuss transition support needs.

North Carolina (REBAL) is creating a Rebalancing Plan to prevent and correct inappropriate placements of adults with significant physical disabilities in institutions. Grant staff conducted a survey and two consumer focus groups to solicit input regarding the draft plan, and modified it based on feedback. As part of an effort to test some of the recommendations in the draft plan, the Grantee also designed a pilot to determine whether allowing "self-declaration" or "presumed" Medicaid financial eligibility for pilot participants and immediate access to waiver services can prevent premature nursing facility placement. The State’s Medicaid agency is evaluating the feasibility of reserving 30 waiver slots in two counties for the pilot.

Wisconsin (CSR) grant staff helped 776 consumers to transition to the community through Wisconsin’s Community Relocation Initiative, which is under way in 66 of the State’s 72 counties. Grant funds supported Department of Health and Family Services staff’s work to (1) create mechanisms to track the Initiative’s budget and participants, (2) prepare reports for the Department management and the State Legislature, and (3) provide policy clarification and technical assistance to county agencies and Family Care programs that transitioned consumers to the community. The Initiative uses a Money Follows the Person mechanism established in Wisconsin in 2005.

Housing

Recognizing that lack of affordable and accessible housing is a major barrier to community living, in FY 2004, CMS awarded Integrating Long Term Supports with Affordable Housing grants to eight states. The purpose of these grants was to remove barriers preventing Medicaid-eligible individuals of all ages with disabilities from residing in the community housing arrangement of their choice.

As shown in Exhibit 4, Grantees reported progress on housing-related initiatives in four categories:

Exhibit 4. Number of States with Types of Housing-Related Activities
State Increase
Access
Develop or Expand
Housing with Supports
Develop State
Infrastructure
Other
Arkansas Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
District of Columbia Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Mississippi     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
New Hampshire Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
North Carolina Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Oregon Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Pennsylvania Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Vermont     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Total 6 2 5 2

Grantees’ initiatives vary considerably. Most focus on improving access to new or existing housing or coordinating the processes of obtaining housing and services to ensure timely access to both. A few are developing or expanding new options for housing with supports, developing housing registries, or working to expand the supply of accessible and affordable housing. Some are working to streamline the process for obtaining home and community services in conjunction with housing. A few are undertaking other activities, such as increasing the availability of housing-related assistive technology and implementing universal design standards. The remainder of this section presents examples of Grantees’ accomplishments in each category.

Increase Access to Housing

The District of Columbia (Housing) helped to develop a draft memorandum of understanding between the Department of Mental Health (DMH) and the District of Columbia Housing Authority (DCHA), which outlined a process for streamlining DMH clients’ access to DCHA services. Grant staff are refining this process and working on mechanisms for creating reporting systems to support the MOU.

Oregon (Housing) has an initiative to streamline and improve access to Medicaid services and other resources that enable persons with serious mental illness to live in community housing. Grant staff completed a major component of this initiative: an analysis of existing supports and gaps in service delivery that identified several financing issues and conflicting administrative rules that need to be addressed. Staff have also developed informational materials that explain how Medicaid is currently used in Oregon to provide mental health services and to identify barriers to supporting people with psychiatric disabilities in community housing.

Pennsylvania (Housing) has developed a real-time listing of vacant, affordable housing on the website of the State’s Public Housing Financing Authority (PHFA). The site is used by property managers and developers in the PHFA portfolio. The PHFA’s Affordable Apartment Locator was developed as a resource to link consumers to affordable-housing options throughout the Commonwealth. This website offers information about apartment locations, rental prices and subsidies, accessibility features, development amenities, current vacancies, contact information, and the status of a property’s waiting list. Maps and photographs of the property are also provided when available. The site has been expanded to include 1,188 additional properties and now lists 65,742 affordable units. The site has received more than 100,000 hits since it went live August 1, 2005.

PHFA generates a county-specific report, listing available units, which is sent bimonthly to all agencies involved in nursing home transition. PHFA continues to recruit landlords and properties to be listed on the apartment locator and provides informational sessions and workshops throughout the State on how to use the locator. However, it is difficult to get public housing authorities to register to use the locator because the vast majority of them have waiting lists and have no need to market their units.

Develop or Expand Housing with Supports

Arkansas (Housing) is developing an adult foster care residential option—the Adult Family Home Program—under the ElderChoices waiver. The grant’s Affordable Housing and Long-Term Supports (AHLTS) Workgroup has researched adult foster care regulatory approaches and is considering various approaches to structure the new option to meet the State’s unique needs, including those of its most rural areas. Once the ElderChoices waiver amendment is submitted to CMS, the Workgroup will begin developing provider training and technical assistance and identifying participants for the pilot homes. Program implementation is planned for June 2007.

The District of Columbia (Housing) has an initiative to identify individuals with severe mental illness who are in foster care and match them with potential independent housing arrangements. Grant staff have hosted several focus groups, as well as information sessions with case managers and individuals regarding the program. They have also begun developing a mechanism for identifying program participants and have so far selected three participants. Grant staff have also developed a Housing Survey and Eligibility Checklist to help case managers identify individuals who match the program’s participation criteria as well as the individuals’ housing needs.

Develop State Infrastructure for Coordinating and Integrating Housing with Supports

Mississippi’s (Housing) primary goal is to develop a statewide local planning and action infrastructure for ongoing coordination and integration of long-term supports and housing. A first step is the development of a statewide Action Plan with recommendations for interagency coordination of policies, resources, and services that result in the development of infrastructure to meet the housing and services needs of individuals with disabilities. The recommendations will specifically address how to improve coordination between the long-term care and housing sectors. To inform the plan, grant staff reviewed existing data, engaged consultants, and conducted a focus group and community forum to obtain consumer input about the State’s current LTC system and the accessibility and affordability of housing. Recurring themes in both the focus group and the community forum were the need for more affordable and accessible housing, more job opportunities for people with disabilities, improved transportation services, and "money follows the person" funding.

Some of the Action Plan’s recommendations will be field-tested in two pilot demonstration projects. Grant staff have selected two regions based on their ability to address the housing and LTC needs of Medicaid-eligible individuals. One region comprises 18 south-central counties—an area significantly affected by Hurricane Katrina—and the other region comprises 19 central counties. The pilots will build on existing programs, such as the State’s Home of Your Own Project.

New Hampshire (Housing) has an initiative to increase access to affordable housing and supports for older persons with mental illness or dementia by developing infrastructure and maximizing existing resources. As a first step, grant staff have developed regional "elder wrap" teams comprising consumers, public and private housing-sector leaders, service providers, and community organizations. To help these teams better address housing and service coordination systems issues, they have provided them with extensive training and technical assistance.

Grant staff also held a housing summit to facilitate communication among the NH Housing Finance Authority, other community-based housing organizations, and the Bureaus of Elderly and Adult Services and Behavioral Health. They have recently begun implementing a comprehensive statewide training and education initiative for housing and service providers to help ensure the integration of affordable housing and long-term supports. Grant staff offered a statewide conference on legal issues and held four regional training sessions.

As part of its initiative to develop infrastructure for cross-agency collaboration within both the disability services system and the affordable housing system, North Carolina (Housing) grant staff have established 23 Local Housing Support Committees to refer persons with disabilities to Low Income Housing Tax Credit (LIHTC) units and to respond to service needs.

Grant staff also developed a guide targeted to housing providers—Fair Housing for Tenants with Disabilities: Understanding Reasonable Accommodations and Reasonable Modifications—and conducted training on this topic for all of the Housing Support Committees as well as groups of local mental health providers. Additionally, they established a contract with the NC Justice Center to offer six regional trainings in 2007 on Fair Housing and NC Landlord-Tenant Law. The Guide has had a second printing and is being widely used across the State by property managers, consumers, advocates, and service providers.

To expand housing expertise among consumers, advocates, and local human services agencies, grant staff completed Housing Resource Guides for all of the State’s 100 counties and transferred management of the guides to NC Housing Coalition (posted on www.nchousing.org).

Vermont (Housing) has made incremental progress on its initiative to improve access to housing by preserving, developing, and enhancing supportive housing projects. Grant staff have provided project planning and development services to 10 affordable and accessible housing projects that they anticipate will serve 308 Medicaid-eligible or medically needy persons. One of the 10 projects is on schedule and approaching completion. The Vermont Housing Finance Agency, working under contract to the grant, has begun to develop a model project toolkit for affordable housing projects that integrate services.

The grant’s other initiative is to co-locate two PACE (Program for All-Inclusive Care for the Elderly) sites with affordable housing sites to increase the ability to age in place through the provision of crucial supports in existing housing. For the Colchester site, PACE Vermont has submitted its provider application to CMS, and the State has conducted the Readiness Review visit. Grant staff anticipated that PACE would be operational in this site by early 2007.

In Rutland, PACE Vermont has signed a lease with Green Mountain Development for a 9,000-square-foot PACE facility at The Maples, which has approximately 200 senior housing units. When approval is received from CMS for the PACE Center in Colchester, PACE Vermont and the State will start the process of submitting the PACE expansion application to CMS for the Rutland site. The building in which the PACE program will be located is a new facility and is scheduled to be completed in mid-2007. PACE Vermont expects to be operational at the senior housing site by the end of 2007.

As a result of the early work of the grant project, and after consulting with community partners involved with the project, the Commissioner of the Department of Disabilities, Aging, and Independent Living (DAIL) has initiated a process to examine the long-range plan for meeting the affordable supportive-housing needs of Vermont’s elderly and adult disabled citizens.

Other Housing-Related Activities

Arkansas (Housing) contracted with a consultant to develop a 10-year needs and resource analysis to determine county needs for home and community services, adult foster care, assisted living, and other licensed services. The consultant obtained significant workgroup and stakeholder input, gathered extensive statistical information, identified a wide range of resources on a county basis, and is preparing a final report. Grant staff will use the report to develop a feasible 3- and 10-year strategic plan to address county needs.

The Grantee also contracted with the University of Arkansas, School of Architecture (UASA), to develop universal design standards to promote accessible housing statewide; UASA has completed an initial draft of the standards. UASA has also completed the initial draft of tutorials about the standards, which it will present in a series of forums to seek feedback from a wide range of interested parties (e.g., consumers, service providers), as well as home contractors for developing the final standards.

Oregon (Housing) has an initiative to help ensure access to affordable housing linked to long-term supports by making housing-related assistive technology available to people of all ages with disabilities. A grant contractor developed a website—technologyforhousing.org—that provides information about the grant, an assistive technology survey with incentives for participating, links to state agencies, assistive technology resources in Oregon and nationally, and forum groups. The site disseminates information about technology and housing to a wide audience. An interactive feature provides a communication link for stakeholders and project staff, and a listserv feature will soon be implemented.

Grant staff have conducted four training events about the potential of assistive technology in affordable housing, the barriers that prevent wider use of AT, and strategies—with examples—for achieving that goal. Training was provided at the National Association of DD Service Directors’ annual meeting and the Oregon Rehabilitation Association quarterly meeting; and for the staff of the Oregon Housing and Community Services Department. These trainings have led to the implementation of plans at the state and local levels for expanded use of technology in affordable housing. Several additional trainings are scheduled.

Grant staff have also recommended revisions in the Oregon Individual Service Plan format for adults with developmental disabilities to include questions about assistive technology as part of the residential service planning process. These revisions are likely to be adopted. They have also discussed with the stakeholder group recommending revisions to the planning process for persons with physical disabilities, the need to incorporate assistive technology into this process, and the group has agreed to consider them.

Mental Health Services

To live in and participate fully in their communities, adults with serious mental illness and children with serious emotional disturbance need mental health services and supports that facilitate recovery. As part of the Systems Change Grants program, in FY 2004 CMS awarded 12 Mental Health Systems Transformation (MHST) grants. Their purpose is to improve states’ ability to offer evidence-based and recovery-oriented services through the Medicaid system to consumers with mental illness. The grants are specifically intended to help states better align their mental health and Medicaid systems to collaborate with one another and with other stakeholders in order to improve service delivery.

Medicaid recognizes six evidence-based practices: medication management, assertive community treatment (ACT), supported employment, family psycho-education, illness management and recovery, and integrated mental health and substance abuse treatment. Recovery orientations supported by Medicaid include peer supports, self-direction, and other consumer-owned and -operated services and supports.

The Grantees’ initiatives are grouped into three categories, as shown in Exhibit 5: those that (1) increase the availability of evidence-based practices; (2) increase the availability of recovery-oriented programs; and (3) strengthen consumers’ roles in state system and community agency governance, decision making, planning, and service delivery.

Exhibit 5. Number of States with Initiatives to Improve Mental Health Systems
State Increase Availability of
Evidence-Based
Practices
Increase Availability of
Recovery-Oriented
Services
Strengthen
Consumer
Involvement
Delaware Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Maine   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Massachusetts   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Michigan   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Minnesota Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
New Hampshire Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
North Carolina Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Ohio Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Oklahoma Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Oregon Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Pennsylvania   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Virginia Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Total 8 6 3
Increase Availability of Evidence-Based Practices

Implementing evidence-based practices (EBPs) can be a complex endeavor because of a wide range of system barriers, including a lack of financial incentives for providers to offset the cost of developing new services versus providing usual services, and difficulties getting services funded through existing Medicaid reimbursement codes. A lack of specific organizational structures for the delivery and oversight of specific EBPs may also present challenges.

Grantees in eight states reported progress on their initiatives to increase the availability of EBPs in their states’ respective mental health systems. Examples follow.

Delaware (MHST) is developing a family psycho-education manual for the State’s public children’s behavioral health care system. As a first step, grant staff conducted a statewide survey to assess the need for psycho-education followed by focus groups with consumers across the State. They also reviewed currently available resources and the literature about psycho-education. The results of the survey, focus groups, and literature review were published in reports that are being used to inform the development of a child and family psycho-education manual.

The Grantee also conducted a statewide conference with all stakeholders to discuss preliminary recommendations for the components and content of family psycho-education. A draft manual was completed in time for review and input by conference attendees. A statewide nonprofit provider of children’s outpatient mental health treatment and home-based intensive mental health treatment has been contracted to pilot the manual with children and with families at five to six treatment sites across the State. Revisions to the manual will be made based on feedback from the pilot.

Grant staff are also developing a training guide for providers, which will be used to train selected Division of Child Mental Health Services (DCMHS) treatment providers during the grant’s third year. Based on feedback from this training, additional improvements to the manual will be made prior to a statewide training pilot. After incorporating feedback from the pilot, training of all DCMHS providers of children’s mental health services will commence and will include instructions for providers on how to bill Medicaid for the service.

Minnesota (MHST) is developing a database of scientific information for providers and families to guide treatment decisions for children in the State’s mental health services systems. Grant staff have already incorporated the research for five areas—depression, anxiety, disruptive behavior, attention problems, and substance use—into the database. They have coded data for a sixth area (trauma-based disorders) that will be added in the next database update.

New Hampshire (MHST) has a comprehensive plan to implement illness management and recovery (IMR) in the State’s mental health system. Providing training in IMR, which the State recently added as a reimbursable Medicaid service, is a key grant activity. In conjunction with the Dartmouth Evidence-Based Practices Center, grant staff have developed a 12-month curriculum to provide foundational skills training to clinicians and are training more than 200 clinicians per month. In conjunction with these trainings, grant staff are starting a formal supervisory training program for clinical supervision, which will include monthly training and group supervision for supervisors so they can apply this model to their own agency staff.

Grant staff are also developing a "train the trainer" model to ensure sustainability of the IMR practice within the Community Mental Health Centers (CMHCs) in view of high staff turnover at CMHCs. This approach ensures that a core group of staff, usually supervisors, will be available to train new clinicians as they begin work at a particular CMHC.

To support implementation and delivery of IMR in a high fidelity and collaborative process, grant staff are also developing a service-reimbursement strategy and have begun to assign federal billing codes to the new services. Grant staff have also completed fidelity assessments at seven CMHCs and planned to complete assessments at all CMHCs by January 2007.

Another grant objective is to establish an IMR Center of Excellence as a state resource to train, evaluate, sustain, and improve IMR services across state systems. As of the reporting period, grant staff have identified a subcommittee of the state steering committee to provide oversight of the Center of Excellence and have established an IMR Center of Excellence site with answers to frequently asked questions on the Bureau of Behavioral Health’s website.

North Carolina (MHST) is using a new system of Local Management Entities (LMEs) to plan services and monitor quality as part of its reform of the public mental health and substance abuse systems. A major grant objective is to help four LMEs to develop the necessary infrastructure to support and sustain the implementation of evidence-based practices (EBPs) within their local communities. Grant staff provided an all-day training on one of the EBPs—Illness Management and Recovery—and have helped the LMEs to develop strategic action plans, which they are now implementing.

Although action plans are specific to each LME, they share commonalities, including providing training on EBPs to LME staff, boards, and consumers; developing and maintaining collaborative partnerships with provider agencies; and developing materials to educate consumers. In response to the LME’s requests, staff have also provided technical assistance on organizational readiness, start-up costs, rating systems for consumers and their families, outcome data, consumer participation in evaluation initiatives, and strategies for funding EBPs.

One of the LMEs has developed a Memorandum of Agreement (MOA) with the local vocational rehabilitation office and supported employment providers to reaffirm continued collaborative efforts to assist individuals with mental illness, developmental disabilities, and substance abuse disabilities, making it a priority to serve individuals with significant disabilities and help them obtain vocational and employment services.

Grant staff have also developed outreach materials for consumers, including a brochure on EBPs and a newspaper pull-out section on mental health with advertisements and stories from EBP providers.

Ohio (MHST) is implementing an initiative to support the use of peer support specialists in evidence-based assertive community treatment (ACT) services for individuals receiving mental health services from Medicaid-funded community health centers. To facilitate the incorporation of peer support specialists into the State’s ACT teams, grant staff continued training activities initiated during the first year of the grant. They have also continued providing training and technical assistance to county boards and providers of ACT services. Ohio Advocates for Mental Health trained an additional 27 persons about peer support, and the Ohio Coordinating Center for ACT provided additional training to clinical staff. The Ohio Coordinating Center for ACT held one training for providers on "What is Peer Support" and two trainings on "Guarding Against Dual Relationships," which addressed professional boundary and cultural issues. A few consumer advocates assisted with the training, and a few peer support staff also attended with their supervisors.

They also developed a paper, "You Don’t Have to ACT Alone: Using Peer Support to Enhance ACT Teams" to explain how peer support enhances ACT and describes resources available to incorporate peer support specialists into ACT teams.

Although Ohio has trained more than 60 peer support specialists to provide services with ACT teams, only 8 have found work with teams or agencies that employ peer support specialists. A possible reason for their low employment rate may be agencies’ reluctance to hire them until they know whether their services can be reimbursed using a bundled rate. To maintain fidelity with the ACT model, Ohio mandated the inclusion of peer support specialists on certified ACT teams and submitted a State Plan Amendment to CMS in June 2005, requesting Medicaid reimbursement for ACT as a bundled service. As of the date of this report, CMS has not approved this request because of concerns about bundled billing, and so the State is discussing with CMS the possibility of including ACT under the 1915(i) provision, as allowed under the Deficit Reduction Act of 2005. Oklahoma (MHST) has a number of initiatives to develop a policy and program framework to support the inclusion of evidence-based practices in service delivery. As a result of grant activities, two EBPs—Family Psycho-Education and Illness Management and Recovery—are now covered under the rehabilitative option in the Medicaid State Plan.

Grant staff have been analyzing how the State might use procedure code modifiers that would allow the State’s payment system to reimburse EBPs at a higher rate. Using these modifiers would also allow the State to track these services separately from other outpatient behavioral health services as it begins to examine outcomes and the possibility of structuring payment for performance.

Oregon (MHST) has an initiative to develop and expand peer-operated programs and services in at least eight peer groups and provides technical assistance to each group at least monthly. The Grantee is also conducting teleconferences during which the groups share information every 6 weeks. The provision of peer-delivered services has a complementary effect, fostering the identification and involvement of consumers/survivors in the development of mental health policy. Grant staff have developed a compendium of peer-delivered services with an evidence base, which is being used to inform program decisions about service expansion, and, by the Addictions and Mental Health Division Evidence-Based Practice Committee, to clarify the nature and scope of peer-delivered services. The Grantee has also begun researching collaboration strategies, funding mechanisms, and policy improvements needed to sustain peer-operated programs and are developing a document describing current funding mechanisms for peer-delivered services. They have also organized a consultation team to examine options for additional funding mechanisms.

Virginia (MHST) developed consensus statements on implementing the evidence-based practices of Supported Employment and Illness Management and Recovery, which were approved by the Department of Medical Assistance; the Department of Rehabilitation Services; and the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS). The State also has an initiative to maximize opportunities for peer specialists and consumer-operated programs to provide services based on evidence-based practices. However, following an analysis of statewide curricular options for peer specialist training and input from consumers and other stakeholders, DMHMRSAS decided not to develop new peer specialist training programs for Virginia at this time. Rather, the Department will be disseminating a request for proposals to experienced peer specialist training vendors from other states to provide two to three peer specialist training events over a 12-month contract period.

Increase Availability of Recovery-Oriented Services

As with evidence-based practices, reorienting the current mental health services system toward a recovery focus is a complex undertaking that needs to address a number of barriers, including (1) lack of interest among traditional mental health providers about consumer-directed programs and services with a recovery orientation; (2) lack of technical assistance for mental health consumers and traditional providers to effectively implement consumer-directed recovery-focused services; and (3) a lack of sustained funding for consumer-directed services. For example, Medicaid currently has no direct mechanism for reimbursing peer specialists, funding them indirectly through contracts with eligible providers who then engage peer specialists in treatment teams.

Six states reported progress on initiatives to increase the availability of recovery-oriented services. Examples follow.

Maine (MHST) is developing a Peer Support Recovery Specialist Training and Certification Program and has held its first pilot training. As part of its outreach efforts, grant staff developed a two-page document on peer support, which will be used after the grant ends. They also developed a 3-hour introductory workshop for consumers and providers to increase their understanding of peer support. The workshop will be used as a prerequisite for the recovery specialist curriculum during the grant and after it ends.

Massachusetts (MHST) has an initiative to establish a statewide formal network of recovery-oriented programs and activities that are consumer directed (ROCD). Grant staff have developed a directory of 42 ROCD programs, a first step in establishing the network. As a result of data collection efforts for the directory, many of the program staff members now meet regularly to network. Grant staff have also developed a peer specialist training and certification program and have trained 62 individuals.

A major goal of the grant was to establish a state-level consumer-directed Recovery Center of Excellence called the Transformation Center. Its purpose is to provide training and technical assistance to consumer-directed programs and traditional mental health providers and play an active role in the development of state mental health services policy. The Center is fully operational, and the State Mental Health Authority has committed to funding the Center; additional grant funding for its continued operation has also been secured.

Michigan (MHST) is focusing its grant on fostering a recovery orientation in the delivery of mental health services. Having a plan for what will happen and who can make decisions when an individual is in a mental health crisis is an important part of the recovery process. To help individuals with mental illness prepare advance directives, grant staff developed informational materials about new state requirements for advance directives for psychiatric care.

Oklahoma (MHST) Grant staff have continued their work to develop a policy and program framework for a Recovery Support Specialist Network. The state Medicaid agency’s Rates and Standards Committee recently approved a reimbursement rate for peer support services, and the agency has submitted a State Plan amendment to CMS to add a new service that encompasses Recovery Support Specialists.

The standardization of the testing and credentialing process has been completed; 63 people have now completed Recovery Support Specialist training, 48 Recovery Support Specialists have become credentialed, and 42 are employed in this role.

Another grant objective is to develop web-based technology, distance learning, and support opportunities for Recovery Support Specialists. A web group has been established to provide a forum for Recovery Support Specialists to communicate with one another; however, activity with this group has been limited. The Grantee is studying other communication and support approaches, including development of an official website with both public and private access.

Pennsylvania (MHST) is integrating recovery approaches in the traditional array of mental health services through the inclusion of Certified Peer Specialists (CPS) and through Medicaid reimbursement incentives. Grant staff have implemented a program that has trained and certified 91 peer specialists. The initiative’s success led the Office of Mental Health and Substance Abuse Services (OMHSAS) to undertake statewide training of peer specialists, and peer specialists have been trained and certified in a majority of counties. Currently the State has 326 certified peer specialists.

Employment of certified peer specialists was one of the criteria for selecting counties to participate in the grant initiative. Initially, OMHSAS indicated that county mental health programs had to hire at least 25 percent of the newly trained peer specialists. All counties surpassed this percentage, and some hired all of the certified peer specialists.

Grant staff also developed medical necessity criteria and standards for Medicaid-funded Peer Support Services and a State Plan Amendment for Medicaid reimbursement for certified peer specialist services through the Rehabilitative Services option. The State submitted the amendment to CMS, provided additional information requested, and is awaiting final approval.

Virginia (MHST) has implemented the Recovery Orientation Systems Indicator (ROSI) pilot survey to measure consumers’ perception of their mental health services system’s recovery orientation. In all, 596 consumers completed the survey at 43 sites, and the results were analyzed and disseminated in a report to the Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) and interested stakeholders. In June 2006, the new Transformation Data/Outcomes Measures Workgroup selected the ROSI for use as a quality improvement mechanism by the Community Service Boards.

Other accomplishments this reporting period include the launching of a Virginia-specific Recovery, Empowerment and Self-Determination website with educational resources and tools for consumers/survivors, mental health professionals, and other stakeholders.

Strengthen Consumer Involvement

Most Grantees are also working to strengthen the consumer’s role in system and community agency governance, decision making, planning, and service delivery, and to facilitate collaboration between the mental health and Medicaid systems. For example, Maine (MHST) has increased consumer involvement in a variety of advisory committees, ensuring their continued involvement in the training and certification process for peer recovery specialists.

Oregon (MHST) has increased consumer participation and collaboration at all levels of service and policy design, implementation, and oversight. The consumers/survivors who serve on the EBP implementation groups and those on mental health advisory boards and the Mental Health Association of Oregon board have contributed to the adoption of peer-operated services within Oregon’s mental health system, and they have influenced the incorporation of peer-delivered services goals within the Block Grant. The provision of peer-delivered services has a complementary effect of fostering the identification and involvement of consumers/survivors in the development of mental health policy.

Virginia’s (MHST) grant staff have significantly increased the number of consumers included on committees, subcommittees, work groups, and task forces, as part of the transformation initiatives of the Department of Mental Health, Mental Retardation and Substance Abuse Services.

Design, Implement, and Maintain Systems and Processes that Enable and Support Home and Community Services

Shifting LTC spending from institutional settings to home and community settings requires not only a change in the process for allocating funds, but also in the entire state infrastructure that supports the provision of services. Because states’ LTC system infrastructure was originally developed to support the provision of services in institutional settings, states often need to develop new infrastructure to enable and support the provision of home and community services. Grantees in 14 states have initiatives to do so, which are grouped into two broad categories:

Grantees’ accomplishments in each category are described in the following sections.

Quality Monitoring and Management

Comprehensive and integrated quality monitoring and management are essential components of a state’s LTC system. Designing, implementing, and maintaining effective quality assurance and quality improvement (QA/QI) systems that are well suited to community living is a major challenge. Grantees in 12 states have QA/QI initiatives that are seeking to build upon existing disparate quality monitoring activities to develop more unified and comprehensive systems.

Grantees are reviewing the components of their current systems to identify areas that need to be modified; creating integrated data systems; designing new data collection tools, quality monitoring processes, and remediation methods; and training staff in these methods. Remediation is an essential component of the CMS Quality Framework and includes activities designed to expeditiously and effectively correct identified problems at the individual level.

To improve service planning and delivery, many Grantees have initiatives to increase consumer participation in various aspects of QA/QI activities and to provide education about person-centered planning and self-direction.

As shown in Exhibit 6, Grantees’ QA/QI initiatives are grouped into four broad categories:

Many Grantees have more than one type of QA/QI initiative.

Exhibit 6. Number of States with Activities Related to Quality Monitoring and Management
  Systems
Improvements
Adding Consumer-
Focused Components
Remediation Other
Alaska Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Arizona   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Arkansas Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Florida Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
Illinois Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.      
Louisiana Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.      
Massachusetts Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.    
Nebraska Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
New Hampshire Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
New Jersey Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.
North Dakota Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.      
Vermont Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.  
Wisconsin Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.      
Total 12 9 4 2
Systems Improvements

Grantees in 13 states reported initiatives to improve quality monitoring and management systems. Many are taking advantage of state agency restructuring to develop new, integrated QA/QI systems and to develop cross-agency awareness of continuous quality improvement practices. They are also developing training programs for their staff and for provider agencies to understand these new QA/QI practices. Examples of these Grantees’ initiatives follow.

Alaska (QA/QI) has taken several steps toward implementing a comprehensive and integrated quality management system for waiver programs: the State (1) developed its Quality Management Strategy, which is a detailed roadmap to guide implementation; (2) completed a report on information technology needs that included a review of information systems used in other agencies and states; and (3) implemented reporting requirements and specified the data elements needed from each manager participating in the system. The entire staff of the Division of Senior and Disabilities Services participated in a QA training explaining the State’s QA strategy and activities.

Arkansas (QA/QI) is developing an automated, comprehensive quality management system for the State’s HCBS waiver programs. Grant staff are reviewing the State’s existing data collection systems and collaborating with the State’s Systems Transformation Grantee on system design to support future development, analysis, and dissemination of quality management reports.

Louisiana (REBAL) is making progress toward improving the quality of supports and services included in the transition plan for consumers moving back to the community. Grant staff helped the Office for Citizens with Developmental Disabilities to establish quality indicators based on the CMS HCBS Quality Framework to monitor outcomes related to the transition process from facilities to community residences. Grant staff are also piloting a transition quality assurance system with 170 people who have transitioned from a large public ICF/MR. They offer technical assistance to providers and transition support coordinators to track data for both individual and agency-wide quality management processes. Data collection for the QA/QI process includes periodic in-person interviews and an in-person survey on satisfaction with quality of life.

Massachusetts (QA/QI) continues to work toward having all New England state MRDD systems utilize a consistent set of quality indicators. The goals of this initiative are to support cross-state comparisons, identify target issues within each state for quality improvement, and create provider profiles that consumers and families can use to select providers. Some of the indicators developed and piloted through this project will be incorporated into the National Core Indicators, a nationally recognized set of performance and outcome indicators for benchmarking and tracking performance in developmental disability services. The State received preliminary benchmark data from most of the member states on a range of health and safety outcomes and integrated individual state data into a single report.

Nebraska (QA/QI), as part of its effort to develop an integrated and comprehensive quality management system, developed and piloted standardized complaint, incident, and financial oversight processes at the local level, which led to recommendations for statewide implementation. In addition, the State developed a standardized review process for use by services coordination agencies to ensure quality service planning and delivery for all HCBS clients. As a result, supervisors monitoring local quality assurance efforts and the statewide Quality Council now have access to computerized data, including information about the timeliness of client evaluations, appropriate level of care determinations, client choice, provider capacity, and services payment oversight. These data can be used to evaluate aspects of service coordination, client outcomes, and service utilization; and to develop quality improvement activities.

The New Hampshire (QA/QI) Grantee established a team to develop and implement a user-friendly cross-agency complaint process and a consistent approach for identifying and investigating complaints. The team, which meets monthly, has identified multiple processes for receiving complaints, and has established common definitions across agencies and minimum standards for investigation and reporting. In the future, the team will be assessing community agencies’ processes and establishing each bureau’s role and responsibilities in the agencies’ complaint processes.

As part of developing a quality management plan addressing all HCBS waivers, the Vermont (QA/QI) Grantee developed 10 quality outcomes, including respect, self-determination, independent living, and well-being. For each outcome, the Quality Management Committee—composed of consumers, families, state administrative staff, service providers, and Quality Management Unit staff—identified a set of indicators. The Committee has also begun to identify data sources and data points that outline specific people, documents, and tools to be used within the discovery process. In addition to including providers on the Quality Management Committee to ensure their buy-in and address their concerns about the new quality monitoring approaches, grant staff attended provider meetings to present new information, foster dialogue, answer questions, and listen to provider feedback.

Wisconsin (CSR), as part of an initiative to improve the quality and consistency of interdisciplinary care management based on consumer preferences, developed a web-based training curriculum that focuses on consumer-centered planning, outcomes assessment, and effective options counseling. The Department of Health and Family Services (DHFS) presented two webcasts to county-based LTC systems on the specifics of care management in managed long-term care. One webcast focused on critical administrative systems (e.g., information management, training, utilization review, and provider network establishment) that need to be present within a managed care organization to support effective care management. The second webcast focused on organizational processes necessary to support effective care management, including building interdisciplinary teams and person-centered decision-making processes for service provision and purchasing.

Grant staff also worked with other DHFS to present a webcast for local LTC stakeholders and planners regarding quality assurance and quality improvement in managed and integrated long-term care. This webcast provided information about quality assessment and management in the Family Care and Wisconsin Partnership programs, including the role of federally mandated External Quality Review Organizations. The webcast focused on the types of administrative and care management structures needed for LTC managed care.

The Wisconsin (CSR) Grantee also completed efforts to improve the capacity of local LTC systems to collect and use information to improve LTC services. These activities included the development of statewide encounter reporting and data retrieval systems using the State’s new Medicaid Management Information Systems. Grant funds were also used by the Wisconsin Division of Disability and Elderly Services to complete a service gap analysis.

Adding Consumer-Focused Components

A frequently expressed concern about quality assurance systems is their lack of a consumer focus and their failure to measure outcomes important to consumers. Grantees in nine states are addressing this concern in a number of ways. Many have organized state- and local-level quality councils comprising consumers, families, and other stakeholders to guide QA/QI activities. Some have organized meetings or symposia on quality topics to educate consumers, providers, and other stakeholders and elicit their input. Grantees are also implementing consumer and family surveys or focus groups to assess quality from the consumer perspective. Examples of these initiatives follow.

Arizona (QA/QI) developed a consumer survey, trained its first cadre of interviewers, and piloted a consumer-to-consumer interview process. The goal of this process is to obtain feedback about the quality of in-home respite, attendant care, and habilitation service directly from consumers. Five individuals with disabilities and five family members have been trained as interviewers. The training team includes staff from Northern Arizona University’s Social Research Laboratory and an attorney specializing in disability law.

Arkansas (QA/QI) assembled a QA/QI Task Force that meets regularly to discuss the design and logistics of a quality monitoring data system that is integrated across departments and agencies. To ensure buy-in, grant staff invite Department of Health and Human Services employees responsible for the waiver programs, as well as consumers and providers, to participate in system development. Members of this Task Force are developing a focus group protocol to elicit consumer feedback about waiver programs. Task Force members also contributed to every aspect of the design and content of a booklet to prepare and support self-directed consumers in the employer role.

Florida (QA/QI) held a day-long symposium on quality topics for consumers, family members, and other stakeholders, which had more than 250 participants. A second symposium, in another region of the State, had 200 registrants but was cancelled due to a tropical storm. These symposia were organized as part of the Grantee’s initiative to establish capacity in each district to provide education and training to consumers and family members and to help them identify service needs and evaluate service success. The presenters included members of the Council on Quality Leadership, local Area Quality Leaders, providers who had received technical assistance to address quality issues, and the state quality monitoring contractor. The Grantee plans to host six local symposia next year to increase access to the training.

A major goal of the Massachusetts (QA/QI) grant is to promote communication and collaboration among state MR/DD agencies, state Medicaid agencies, and the CMS regional office to improve oversight of HCBS programs. Grant staff and representatives of self-advocacy groups from all the New England states and New York participated in a regional meeting with New England state agency directors to identify areas for concentrated quality improvement efforts. As a result, the New England Consortium will develop quality improvement initiatives in a number of areas, including (1) the use of respectful language (e.g., elimination of the term "mental retardation" in agency names), (2) transportation, and (3) reduced use of sheltered workshops and increased access to regular employment.

Nebraska (QA/QI) fielded a survey instrument to gather information from families with children on its Aged and Disabled waiver about the extent to which children and families are experiencing family-centered service coordination; choice of and control over services; respect, dignity, and privacy; and community integration and inclusion. The State is developing a report based on the results; preliminary findings indicate that most families viewed the service coordination process positively across identified program outcome areas. Areas targeted for improvement include back-up planning and enhanced identification of community services and health resources needed by families.

New Hampshire (QA/QI) is designing and implementing a participant-centered and -directed interdepartmental quality assurance/quality management infrastructure for waiver programs and other Medicaid and state-funded LTC services. As part of this initiative, the Division of Community Based Care Services (DCBCS) established a Quality Leadership Committee with representatives from the Bureaus of Behavioral Health, Elderly and Adult Services, and Developmental Disabilities Services. The Quality Leadership Committee identified 15 performance indicators and developed a work plan with a team assigned for each indicator. DCBCS also established a Cross Bureau Committee, which includes representatives from the Bureaus of Behavioral Health, Developmental Disabilities, and Elderly and Adult Services. The committee reviews complex cases, obstacles to access, and systems issues.

New Jersey’s (QA/QI) is working to create an integrated quality management system based on the CMS HCBS Quality Framework that is consistent with the State’s Division of Developmental Disabilities (DDD) strategy. As part of this initiative, grant staff established a Quality Management Steering Committee (QMSC), which has formed a subcommittee consisting solely of family members who meet on a quarterly basis and also a provider subcommittee. The Grantee has also contracted with a provider to create a subcommittee composed of self-advocates. In the coming year, a nationally recognized self-advocate is scheduled to facilitate four self-advocacy meetings throughout the State to discuss participation on the subcommittee. The Grantee has identified a part-time coordinator for the Self-Advocacy subcommittee and plans to hire a self-advocate to serve as Co-Coordinator. The QMSC and the subcommittees have reviewed several consumer survey instruments and selected the National Core Indicators as a quality monitoring tool. A subcommittee has also been created to identify questions that may need to be added to the NCI instrument to meet the State’s quality monitoring needs.

Through a contract with Green Mountain Self Advocates, Vermont (QA/QI) held a series of forums across the State to gather feedback and input regarding its HCBS quality outcomes and indicators (described in the Systems Improvement section, above). More than 100 consumers and family members—representing each of Vermont’s waiver populations—attended the forums. Attendees were asked what was important to them in their lives and services and to provide comment, suggestions, feedback, and input on the draft quality outcomes and indicators.

Remediation

Remediation, an essential component of the CMS Quality Framework, includes activities designed to correct identified problems at the individual level. It is also essential to collect and evaluate information in a timely manner to be able to remedy problems expeditiously and effectively. Grantees in four states reported initiatives in this area. Most of these Grantees are developing or improving components of critical incident reporting systems, or developing coordinated systems for use across multiple waiver programs or state agencies. Some are using information gathered through quality monitoring activities to direct remediation activities, including developing trainings and technical assistance for agency and provider staff. Examples of these initiatives are provided below.

Florida (QA/QI) grant staff developed, trained, and currently provide ongoing support to a statewide network of local Area Quality Leaders who are now responsible for reviewing quality monitoring reports and deciding, with their local steering committees, which quality improvement projects to pursue. Examples of these local projects include increasing the number of individuals with valued social roles, increasing the number of people supported in employment outcomes, increasing outcomes in achievement of individuals’ rights, and improving health and safety outcomes such as access to dental services. The State continues to provide training in interpreting monthly data reports from ongoing quality assurance reviews and data from local offices related to incident reports, provider complaints, and grievances.

The Nebraska (QA/QI) HCBS Waivers’ Quality Council has begun to analyze data from the newly integrated quality monitoring system and to recommend steps for remediation and improvement. Specific remediation plans were identified based on state-level meetings with local-level supervisory staff.

New Hampshire (QA/QI) Grant staff have developed an intradepartmental structure to facilitate risk assessment by offering case consultation, collaboration, and seamless access to those persons whose illnesses cross bureau boundaries. The State also implemented Sentinel Event policies and procedures applying to all bureaus within DCBCS of the Department of Health and Human Services (i.e., Bureaus of Behavioral Health, Developmental Services, and Elderly and Adult Services). The Department of Health and Human Services Commissioner assigns responsibility for conducting an internal review of a sentinel event, such as unanticipated death or loss of function, abuse, or neglect. A report is then submitted to the Commissioner containing an explanation of the actions leading up to and contributing to the event and an action plan to reduce the risk of similar events.

Other Quality Monitoring and Management Initiatives

Other initiatives related to quality monitoring and management include Florida’s (QA/QI) effort to develop state and local provider recognition programs and processes for disseminating information on promising practices. The state Agency for Persons with Disabilities began sending letters of recognition to providers who meet specific positive quality results based on input from the state Medicaid agency, the quality monitoring contractor, the Area Quality Leaders, provider groups, and the Interagency Quality Council.

New Jersey (QA/QI) has finalized the curriculum, scripts, and narration for interactive training CDs to help HCBS providers develop their own quality improvement systems. Although agencies are required to have a continuous quality improvement (CQI) plan, the State identified a need to provide training to help agencies to develop and implement these plans. The three-CD set has three lessons: developing a CQI plan, how to use a CQI plan, and understanding the CMS HCBS Quality Framework. When completed, the three-CD set will be sent to each provider site.

Budgeting and Reimbursement Systems

Modifying budgeting and reimbursement systems is an important component of states’ efforts to create more balanced LTC systems. Grantees in four states reported various initiatives to change their budgeting and reimbursement systems. These initiatives are grouped into three categories: (1) rebalancing infrastructure development; (2) payment rates and methodologies to accommodate community living; and (3) Money Follows the Person activities. Some of these Grantees are developing changes to accommodate a shift to more integrated delivery systems such as managed care. The remainder of this section provides examples of Grantees’ accomplishments in each of these three categories.

One Grantee is working to shift LTC system funding toward community-based care. Although other states with Rebalancing grants are working on specific initiatives to balance parts of their LTC system, North Dakota is assessing various possibilities for balancing the larger LTC system. North Dakota (REBAL) developed a draft strategic plan to examine ways to balance funding across the continuum of care and to decrease reliance on institutional care. The project director conducted presentations on the plan to a stakeholder committee and at six in-state conferences and meetings to obtain input from consumers and providers. As a result, stakeholders are now interested in developing methods to balance state resources for HCBS and institutional care, increase funding for direct care workers, and to consider others ways to build support for community-based care.

Three Grantees are studying or developing payment rates or methodologies, which will be used in systems designed to integrate or manage health and/or long-term care services.

Vermont (CSR) has an initiative to develop a reimbursement system for integrated care organizations. As part of this initiative, the Grantee contracted with the Pacific Health Policy group to create a report analyzing Medicaid and other insurance data to identify potential provider-reimbursement mechanisms for use in implementing its model integrated care organization. The Grantee worked with CMS to identify appropriate reimbursement mechanisms that both achieved the purpose of the model integrated care organization and met CMS requirements. Based on the report and discussions with CMS, the Department of Aging and Independent Living and its planning and advisory committees decided that potential provider organizations could choose one or a combination of two options to serve the defined target populations. The first mechanism identified for use is a rural PACE concept to serve consumers aged 55 or older who are frail and chronically ill. The second mechanism is a Special Needs Plan to serve consumers aged 55 or older who are frail, and adults with physical disabilities and/or chronic illnesses.

Wisconsin (CSR) is developing and implementing strategies to reposition Wisconsin’s nursing home industry in light of the State’s transition to managed long-term care under its Family Care program. The Department of Health and Family Services developed acuity-based rates for nursing facility reimbursement and began the transition to the new rates in July 2006. The Grantee also completed an extensive analysis of the need for nursing facility beds in Wisconsin between 2005 and 2020. The Grantee also has an initiative to provide counties with financial and technical support to plan, design, and begin to implement local reform efforts. Grantees in two states are developing components of Money Follows the Person (MFP) policies or using an MFP mechanism to enable transitions. As part of its goal to balance public expenditures for LTC services, Louisiana (REBAL) is supporting the development of an MFP strategy in a new waiver—the Residential Options waiver—to facilitate transition from the State’s ICFs/MR. The legislature included language in the State’s budget bill to allow a Money Follows the Person policy for two facilities that have developed downsizing plans with the help of grant staff. Public and private ICFs/MR providers, consumers and family members, and other stakeholders are participating in the development of the waiver.

Wisconsin (CSR) continued using its MFP policy to conduct transitions from nursing facilities under its Community Relocation initiative. Under this initiative, Wisconsin transfers nursing facility funds to the Community Integration Program II, a funding mechanism for the Community Options Program waiver. The new MFP initiative does not require the closure of a specific bed and allows for the permanent transfer of nursing facility funds to the waiver budget.

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SECTION 4
GRANTEE CHALLENGES

More than half of the Grantees cited a wide range of challenges that impeded progress toward grant goals. Eighteen Grantees reported challenges specific to their grant projects, such as provider resistance to peer-support services. Others reported more general challenges, such as difficulty engaging consumers and key stakeholders in their initiatives. For example, Arizona (QA/QI) grant staff had only limited success in their efforts to recruit consumers to provide feedback about the quality of in-home respite, attendant care, and habilitation services. In Arkansas (QA/QI), the lack of widely available, accessible public transportation hampered consumer participation in the grant’s task force. When consumers missed meetings because of transportation problems, they felt that they were not up-to-date on the issues, which discouraged some from attending future meetings.

Lack of consumer follow-up was a major barrier to the success of Nebraska’s (QA/QI) pilot program to identify potential polypharmacy issues for individuals receiving LTC services in their home or an assisted living setting. A pharmacist provided medication reviews for 21 consumers, only 1 of whom followed up with her physician, who did not respond positively.

Three Grantees cited staffing challenges. District of Columbia (EPSDT) grant staff found it difficult to locate mental health providers to provide services to youth with disabilities who were transitioning to adult services, as a result of low reimbursement rates and a shortage of providers trained to work with this population. Difficulty finding RNs to conduct assessments delayed New Hampshire’s (QA/QI) testing of a new level-of-care protocol for waiver programs and nursing facility services, and North Carolina (MHST) encountered a shortage of qualified staff to develop an infrastructure for the adoption of Evidence-Based Practices (EBPs) and to conduct training to promote EBPs among provider agencies.

Two MHST Grantees cited provider shortages and resistance as major challenges to the success of their initiatives. Oklahoma (MHST) reported that providers have been unwilling to accept peer-directed services and slow to adopt evidence-based practices and the grants’ Illness Management and Recovery program. A shortage of providers in rural areas has prevented grant staff from fully implementing the grant program in those parts of the State. Pennsylvania (MHST) grant staff have encountered resistance from providers who use traditional medical service models to use peer support specialists trained under the grant.

One Grantee mentioned policy and administrative challenges to achieving grant goals. Oregon (Housing) encountered resistance within the state Medicaid system to changes in service definitions, billing mechanisms, and administrative rules that would allow the provision of assistive technology and other supports to people with psychiatric disabilities in community settings.

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SECTION 5
CONSUMER INVOLVEMENT IN SYSTEMS CHANGE ACTIVITIES

The Centers for Medicare and Medicaid Services mandates consumer involvement in Systems Change Grant activities. During the reporting period, Grantees in almost all the states reported that consumers and consumer partners were actively involved in grant oversight and implementation.3 Consumer involvement included membership on advisory and planning committees, direct involvement in grant activities, and other roles, listed below.

Grantees in all but three states indicated that consumers were involved in implementation activities in a variety of ways: (1) committees and planning meetings; (2) the development and testing of products and outreach materials; (3) pilot programs, focus groups, and surveys; (4) formative and summative evaluation activities, such as developing indicators for a quality management plan; and (5) peer mentoring.

Grantees in almost all the states involved consumers or consumer partners on advisory boards, consumer task forces, or advisory committees. Of the more than 1,000 members serving on task forces or advisory committees during the reporting period, about 36 percent were individuals with disabilities, and about 15 percent were consumer advocates.

Exhibit 7 shows the range of activities in which Grantees involved consumers and the number of Grantees reporting each type of activity.

Exhibit 7. Consumer Involvement in Systems Change Activities
Activity Number of Grantees
Participated on committees 36
Participated in planning meetings 35
Reviewed grant products 27
Performed grant activities 23
Reviewed outreach materials 17
Attended Grantee-sponsored conferences 14
Responded to surveys 14
Participated in focus groups 11
Developed outreach materials   8
Served as peer mentors   6
Pilot-tested outreach materials   5
Pilot-tested grant products   5
Developed evaluation   4

Consumer Involvement in Implementation Activities

Florida (QA/QI) received implementation guidance from the Interagency Quality Council, the state group overseeing quality assurance and quality improvement for the Persons with Disabilities Home and Community-Based Waiver. The Council’s membership includes individuals with developmental disabilities and their families.

Mississippi (REBAL)’s advisory group, The Mississippi Transportation Coalition, which includes consumers and consumer groups as members, developed a vision and mission statement for a coordinated transportation system and designed a needs assessment to identify transportation needs.

The Nebraska (QA/QI) Quality Council, composed of consumers and other stakeholders, is analyzing data to recommend steps for remediation and improvement of the state quality assurance system.

Ohio (MHST) partners with the Ohio Advocates for Mental Health, a consumer organization, that is helping to train consumers as peer support specialists.

The Vermont (QA/QI) Quality Management Committee, comprising consumers, family members, and other stakeholders, has developed Outcomes and Indicators for a Quality Management Plan to address HCBS waiver programs.

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SECTION 6
NEXT STEPS

The Centers for Medicare & Medicaid Services (CMS) awarded the Systems Change Grants to states and other entities as seed money to support their efforts to build the infrastructure needed to provide consumer-responsive long-term care (LTC) systems. As the findings in this report illustrate, states have numerous initiatives to improve access to and the availability and quality of home and community services. Many Grantees are developing the necessary infrastructure to enable consumers to live independently in the community, as evidenced by activities to improve, modify, or create new services and supports, and to develop systems to monitor, ensure, and improve the quality of these services and supports.

Though these Grantees are nearing the end of a 3-year grant period (September 2007), it is anticipated that many will request no-cost extensions to continue grant activities for a fourth year. As in other grant years, many Grantees started their activities late and need additional time to complete activities, evaluate their grants, and ensure that their initiatives will be sustained after the grant ends.

Exhibit 8 lists the Systems Change Grants program report schedule (see Appendix C for complete list of reports on Systems Change Grant activities and accomplishments, including URLs).

Exhibit 8. Reports for the Systems Change Grants Program
  Annual Report of First Year's Activities Annual Report of Second Year's Activities Final Report*
FY 2001 Grantees Completed Completed Completed
FY 2002 Grantees Completed Completed Fall 2007
FY 2003 Grantees Completed Completed Summer 2008
FY 2004 Grantees Completed Completed Summer 2009

Final reports will be based on information provided in Grantees’ final reports to CMS and interviews conducted with the project directors. These reports will highlight each state’s accomplishments and enduring changes achieved at the end of the grant period and will summarize accomplishments across all the Grantees by grant type and focus area.

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APPENDIX A
STATE AWARDS BY GRANT TYPE AND TOTAL AWARD AMOUNT, FY 2004

State Quality Assurance/
Quality Improvement
Family to Family Compre-
hensive System
Reform
Portals from EPSDT to
Adult Supports
Integrated Long-Term
Supports with
Affordable Housing
LIFE
Accounts
Feasibility
and
Demonstration
Mental Health: System
Transformation
Rebalancing Initiative Total $
Amount
Awarded
Alaska Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.               417,849
Arizona Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.             650,000
Arkansas Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.       1,400,000
Delaware             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   300,000
District of
Columbia
      Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.       1,311,653
Florida Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.               475,000
Illinois               Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 300,000
Kentucky   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.             150,000
Louisiana   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.           Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 450,000
Maine             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   262,318
Massachusetts Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.         Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   949,226
Michigan             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   300,000
Minnesota             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   300,000
Mississippi         Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 1,002,700
Nebraska Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.         970,000
New Hampshire Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.       Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   1,798,942
New Jersey Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.               475,000
New Mexico   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.             150,000
New York   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.             150,000
North Carolina   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 2,055,930
North Dakota   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.           Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 450,000
Ohio             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   300,000
Oklahoma             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   299,820
Oregon         Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   1,128,232
Pennsylvania         Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   1,193,340
Tennessee               Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 291,382
Utah   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.             150,000
Vermont Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.       3,489,572
Virginia             Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. Image representing a dot. A dot in a cell affirms a state's provision of a certain activity. 600,000
West Virginia   Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.             141,800
Wisconsin     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     Image representing a dot. A dot in a cell affirms a state's provision of a certain activity.     5,600,000
Total 9 10 2 2 8 2 12 7 $27,512,764

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APPENDIX B
LEAD AGENCIES RECEIVING GRANTS, BY STATE
(FY 2001–FY 2004 GRANTEES)


State Grant Type Grantee Organization or Agency
Alabama NFT-ILP Mid-Alabama Chapter of the Alabama Coalition of Citizens with Disabilities, DBA Birmingham Independent Living Center
  NFT-SP Alabama Department of Senior Services, State Unit on Aging
  RC Alabama Medicaid Agency, Long-Term Care Division
  RFC Alabama Department of Mental Health and Mental Retardation
Alaska CPASS Department of Administration, Division of Senior Services
  FTF Stone Soup Group
  NFT-SP Department of Administration, Division of Senior Services
  QA/QI Department of Health and Social Services (DHHS)
  RC DHHS, Division of Mental Health and Developmental Disabilities
Arizona CPASS Arizona Department of Economic Security, Division of Developmental Disabilities
  FTF Raising Special Kids
  QA/QI Department of Economic Security, Division of Developmental Disabilities
Arkansas CPASS Department of Human Services, Division of Developmental Disabilities (DDS)
  HOUSE Department of Human Services, Division of Aging and Adult Services (DAAS)
  NFT-SP DAAS
  QA/QI DAAS
  RC DAAS
  RFC Arkansas Department of Human Services
California MFP California Department of Health Services (DHS)
  NFT-ILP Community Resources for Independence
  QA/QI California Department of Developmental Services
  RC California Department of Social Services
  RFA California Department of Mental Health
Colorado CPASS Colorado Department of Health Care Policy and Financing
  FTF Family Voices of Colorado
  IP Department of Health Care Policy and Financing
  NFT-SP Department of Health Care Policy and Financing, Office of Medical Assistance
  QA/QI Colorado Department of Human Services, Division for Developmental Disabilities
  RC Department of Health Care Policy and Financing
Connecticut CPASS Connecticut Department of Social Services
  IP Connecticut Department of Mental Retardation
  NFT-SP Department of Social Services
  QA/QI Connecticut Department of Mental Retardation
  RC Department of Social Services
Delaware MHST Department of Services for Children, Youth and Their Families, Division of Child Mental Health Services (DCMHS)
  NFT-ILP Independent Resources, Inc.
  NFT-SP Delaware Health and Social Services, Division of Services for Aging and Adults with Physical Disabilities
  QA/QI Division of Developmental Disabilities Services (DDDS)
  RC Delaware Health and Social Services
District of Columbia CPASS Department of Health, Medical Assistance Administration
  HOUSE District of Columbia Department of Mental Health (DMH)
  PORT DMH
  RC Department of Health, Medical Assistance Administration
Florida IP Florida Department of Children and Families
  QA/QI Agency for Persons with Disabilities (APD)
  RC Florida Department of Management Services, Americans with Disabilities Act Working Group
Georgia IP Georgia Department of Human Resources
  NFT-ILP disABILITY LINK
  NFT-SP Georgia Department of Community Health, Division of Medical Assistance, Aging & Community Services
  QA/QI Georgia Department of Human Resources
  RC Georgia Department of Human Resources
Guam CPASS Department of Integrated Services for Individuals with Disabilities
  RC Department of Public Health and Social Services, Division of Public Health
Hawaii CPASS State of Hawaii, Department of Health
  RC Department of Human Services
Idaho IP Idaho Department of Health and Welfare, Division of Medicaid
  MFP Idaho Department of Health and Welfare, Division of Family and Community Services
  RC Department of Health and Welfare, Division of Family and Community Services; Idaho State University Institute of Rural Health
Illinois CTAC Illinois Department of Human Services
  RC Illinois Department of Human Services
  REBAL Illinois Department of Aging
Indiana CPASS Family and Social Services Administration
  FTF The Indiana Parent Information Network, Inc. (IPIN)
  NFT-SP Indiana Family and Social Services Administration
  QA/QI Indiana Family and Social Services Administration/Division of Disability, Aging, and Rehabilitative Services
  RC Family and Social Services Administration
Iowa RC Iowa Department of Human Services, Division of MH/DD
Kansas CPASS The University of Kansas Center for Research, Inc.
  RC Department of Social and Rehabilitation Services, Resource Development
Kentucky FTF The Arc of Kentucky, Inc.
  RC Kentucky Cabinet for Health Services
Louisiana CPASS Louisiana Department of Health and Hospitals
  FTF Family Voices of Louisiana
  IP Louisiana Department of Health and Hospitals
  NFT-SP Department of Health and Hospitals
  RC State of Louisiana Department of Health and Hospitals
  REBAL Louisiana Department of Health and Hospitals
Maine IP Maine Department of Behavioral and Developmental Services (BDS)
  MFP BDS
  MHST Maine Department of Health and Human Services, Adult Mental Health Services
  QA/QI Maine Department of Human Services
  RC Maine Department of Human Services, Bureau of Medical Services
Maryland CTAC Mental Health Administration, Maryland Department of Health and Mental Hygiene
  FTF The Parents’ Place of Maryland
  NFT-ILP Making Choices for Independent Living, Inc.
  NFT-SP Department of Human Resources (DHR), Office of Personal Assistance Services
  RC Department of Health and Mental Hygiene
  RFC Mental Hygiene Administration, Maryland Department of Health and Mental Hygiene
Massachusetts CPASS Massachusetts Department of Mental Retardation
  CTAC Executive Office of Health and Human Services
  FTF Massachusetts Family Voices @ Federation for Children with Special Needs
  IP University of Massachusetts Medical School
  MHST University of Massachusetts Medical School, Center for Health Policy and Research
  NFT-SP Department of Mental Retardation, Division of Systems Integration
  QA/QI University of Massachusetts Medical School
  RC Center for Health Policy and Research, University of Massachusetts Medical School
Michigan CPASS Michigan Department of Community Health, Long-Term Care Initiative
  IP Department of Community Health
  MFP Department of Community Health
  NFT-SP Department of Community Health, Long-Term Care Initiative
  RC Department of Community Health, Long-Term Care Programs
  RFC Department of Community Health, Division of Mental Health Services for Children and Families
Minnesota CPASS Minnesota Department of Human Services, Continuing Care for Persons with Disabilities
  MHST Minnesota Department of Human Services
  NFT-ILP Metropolitan Center for Independent Living
  QA/QI Department of Human Services, Continuing Care Administration
  RC Department of Human Services, Continuing Care for Persons with Disabilities
Mississippi CTAC Division of Medicaid
  HOUSE The University of Southern Mississippi, Institute for Disability Studies
  RC Mississippi Department of Mental Health
  REBAL Department of Mental Health
Missouri CTAC Missouri Department of Mental Health
  IP Department of Mental Health, Division of Mental Retardation and Developmental Disabilities
  QA/QI Department of Health and Senior Services
  RC Department of Social Services
Montana CPASS Department of Public Health and Human Services, Senior & Long-Term Care Division
  FTF Parents, Let’s Unite for Kids (PLUK)
  IP Department of Public Health and Human Services
  RC Department of Public Health and Human Services
Nebraska CPASS Nebraska Department of Health and Human Services
  NFT-SP Department of Health and Human Services, Finance and Support
  PORT Department of Health and Human Services
  QA/QI Department of Health and Human Services
  RC Nebraska Department of Health and Human Services, Finance and Support
Nevada CPASS Department of Employment, Training & Rehabilitation, Office of Community Based Services
  FTF Family TIES (Training, Information, and Emotional Support) of Nevada, Inc.
  MFP Nevada Department of Human Resources
  RC Department of Human Resources
New Hampshire CPASS Granite State Independent Living
  HOUSE University of New Hampshire, Institute on Disability
  LIFE University of New Hampshire—Institute on Disability/University Center of Excellence in Disability
  MHST State of New Hampshire, Bureau of Behavioral Health (BBH)
  NFT-SP Department of Health and Human Services (DHHS), Elders Division
  QA/QI DHHS
  RC DHHS
New Jersey FTF Statewide Parent Advocacy Network of New Jersey, Inc. (SPAN)
  NFT-ILP Resources for Independent Living, Inc. (RIL)
  NFT-SP Department of Health and Senior Services
  QA/QI New Jersey Department of Human Services, Division of Developmental Disabilities (DDD)
  RC New Jersey Department of Human Services
New Mexico FTF Parents Reaching Out
  RC Human Services Department, Medical Assistance Division
New York FTF Parent-to-Parent of NYS, Inc.
  QA/QI New York State Department of Health, Office of Medicaid Management
  RC New York State Department of Health
  RFA New York State Department of Health
North Carolina CPASS Department of Health and Human Services
  FTF The Exceptional Children’s Assistance Center
  HOUSE North Carolina Department of Health and Human Services (DHHS)
  MHST DHHS
  NFT-SP DHHS
  QA/QI DHHS
  RC DHHS
  REBAL DHHS
North Dakota FTF Family Voices of North Dakota (FVND)
  RC State of North Dakota
  REBAL North Dakota Department of Human Services
Northern Mariana Islands RC Governor’s Council on Developmental Disabilities
Ohio IP Ohio Department of Mental Retardation and Developmental Disabilities (ODMRDD)
  MHST Ohio Department of Mental Health
  NFT-SP Ohio Department of Job and Family Services
  QA/QI ODMRDD
  RC Ohio Department of Job and Family Services
  RFA Ohio Department of Aging
Oklahoma CPASS Oklahoma Department of Human Services, Aging Services Division
  MHST Oklahoma Department of Mental Health and Substance Abuse Services
  RC Oklahoma Department of Human Services, Aging Services Division
Oregon CPASS Oregon Health and Science University
  HOUSE State of Oregon Department of Human Services (DHS)
  MHST Portland State University
  QA/QI Oregon Department of Human Services, Seniors, and People with Disabilities
  RC Oregon Department of Human Services
  RFC Oregon Department of Human Services, Seniors, and People with Disabilities
Pennsylvania HOUSE Governor’s Office of Health Care Reform
  MFP Department of Public Welfare
  MHST Pennsylvania Department of Public Welfare, Office of Mental Health and Substance Abuse Services (OMHSAS)
  QA/QI Department of Public Welfare
  RC Department of Public Welfare
Rhode Island CPASS Rhode Island Department of Human Services (DHS)
  NFT-SP DHS, Center for Adult Health
  RC DHS, Center for Adult Health
  RFA DHS
  RFC DHS
South Carolina NFT-SP Department of Health and Human Services, Office of Senior and Long-Term Care
  QA/QI South Carolina Department of Disabilities and Special Needs
  RC Department of Health and Human Services
South Dakota FTF South Dakota Parent Connection, Inc.
Tennessee CPASS Tennessee Department of Finance and Administration
  QA/QI Department of Finance and Administration
  RC Department of Mental Health & Developmental Disabilities
  REBAL Tennessee Department of Finance and Administration’s Bureau of TennCare
Texas CPASS Texas Department of Human Services
  CTAC Texas Health and Human Services Commission
  MFP Texas Department of Human Services
  NFT-ILP Austin Resource Center for Independent Living (ARCIL)
  QA/QI Texas Department of Mental Health and Mental Retardation
  RC Texas Health and Human Services Commission
Utah FTF Utah Family Voices at the Utah Parent Center
  NFT-ILP Utah Independent Living Center
  RC Department of Human Services
Vermont COMP State of Vermont Office of Health Access
  HOUSE Agency for Human Services, Department of Disabilities, Aging and Independent Living (DAIL)
  QA/QI Agency for Human Services DAIL
  RC Agency for Human Services
Virginia CPASS Partnerships for People with Disabilities, Virginia Commonwealth University
  MHST Virginia Department of Mental Health, Mental Retardation and Substance Abuse Services
  RC Department of Medical Assistance Services, Long-Term Care & Quality Assurance
  REBAL Partnership for People with Disabilities, Virginia Commonwealth University
Washington MFP Washington State Department of Social and Health Services
  NFT-SP Department of Social and Health Services
  RC Department of Social and Health Services
West Virginia CPASS West Virginia University Research Corporation
  FTF People’s Advocacy Information and Resource Services (PAIRS)
  NFT-SP West Virginia Department of Health and Human Resources
  QA/QI Department of Health and Human Resources
  RC Department of Health and Human Resources
Wisconsin COMP Wisconsin Department of Health and Family Services
  FTF Family Voices of Wisconsin
  LIFE Wisconsin Department of Health and Family Services
  MFP Department of Health and Family Services
  NFT-ILP Great Rivers Independent Living Center
  NFT-SP Department of Health and Family Services, Division of Supportive Living
  QA/QI Department of Health and Family Services
  RC Department of Health and Family Services, Division of Supportive Living
Wyoming NFT-SP Wyoming Department of Health, Aging Division

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APPENDIX C
SOURCES OF INFORMATION ABOUT
SYSTEMS CHANGE GRANTS

FY 2001 and 2002 Grants

The final report covering the accomplishments and enduring changes achieved by the FY 2001 Nursing Facility Transition Grantees was completed in summer 2006 and is available online (http://www.hcbs.org/moreInfo.php/nr/source/151/lim/ALL/doc/1678/FY_2001_Nursing_Facility_Transition_Grantees:_Final). The FY 2001 CPASS and Real Choice Grantees’ final report was completed in early 2007 and is available online (http://hcbs.org/files/110/5452/01CPASSFinalRpt.htm).

The final report covering the accomplishments and enduring changes achieved by the FY 2002 Nursing Facility Transition Grantees will be completed in summer 2007. The final report of the FY 2002 CPASS and Real Choice Grantees will be completed in fall 2007.

Additional information about the FY 2001 and FY 2002 Grantees, respectively, can be found in the Summaries of the Systems Change Grants for Community Living (http://hcbs.org/files/15/725/Summaries_of_the_Systems_Change_Grants_for_Community_Living.htm and http://hcbs.org/files/9/404/2002_Summaries_of_the_Systems_Change_Grants_for_Community_Living.htm).

Information on the partnership development activities of the FY 2001 Systems Change Grantees is also available at HCBS.org (http://www.hcbs.org/moreInfo.php/source/151/doc/718/Partnership_Development_Activities:_Comparative_An). 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. 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.

Findings from the Year One annual reports of the 52 FY 2001 Systems Change Grantees is available at http://www.hcbs.org/moreInfo.php/nb/doc/1865. This report describes Grantees’ activities and their ratings of progress at the end of the first year of the 3-year grant period.

A summary of 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 is also available online (http://www.hcbs.org/moreInfo.php/nr/source/151/lim/ALL/doc/983/Real_Choice_Systems_Grant_Program:_Second_Year_Rep).

This report 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.

Topic Papers

Three reports describing the initiatives of the FY 2001 and FY 2002 Grantees in selected areas have also been developed. Information about each, with their links, is provided below.

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. Grantee 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/source/151/doc/716/Direct_Service_Workforce_Activities_of_the_Systems

Nursing Facility Transition Initiatives of the Fiscal Year 2001 and 2002 Grantees: Progress and Challenges

This report provides an overview of the 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 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/nr/source/151/lim/ALL/doc/1308/Nursing_Facility_Transition_Initiatives_of_the_Fis

Consumer Direction Initiatives of the FY 2001 and 2002 Grantees: Progress and Challenges

This paper describes the activities of 11 Grantees that received grants in FY 2001 and 2002 and are using them to increase consumer-directed service options. This paper discusses program and policy issues the Grantees have encountered while implementing their consumer-direction initiatives; in particular, how Grantees are addressing 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/nr/source/151/lim/ALL/doc/1601/Consumer_Direction_Initiatives_of_the_FY_2001_and_

FY 2003 and 2004 Grants

Information about the goals and objectives of these grants can also be found in the Summaries of Systems Change Grants for Community Living http://hcbs.org/files/35/1726/2k3CMSSummaries.htm and http://hcbs.org/files/70/3460/2k4Summaries.htm).

Additional information about the FY 2003 and FY 2004 Grantees’ initiatives can also be found in Real Choice Systems Change Grants: Compendium, Sixth Edition, on the CMS technical assistance website (http://hcbs.org/files/107/5337/Compendium6thEdition.htm).

Findings from the Year Two annual reports of the 49 FY 2002 Systems Change Grantees and the Year One annual reports of the 47 FY 2003 Systems Change Grantees are available (http://hcbs.org/files/77/3807/3rdYrAnnualReport.htm). This report describes grant activities in three major LTC systems areas: Access to Long-Term Care Services and Supports; Improvements to Services, Supports, and Housing; and Administrative and Monitoring Infrastructure. For each focus area, the report describes Grantees’ accomplishments, illustrates the challenges, and discusses the consumers’ role in the implementation and evaluation of activities. The report uses information provided during the reporting period October 1, 2003, to September 30, 2004.

A summary of findings from the Year Two annual reports of the 47 FY 2003 Systems Change Grants Research and Demonstration Grants and the Year One annual reports of the 52 FY 2004 Systems Change Grantees is also available (http://hcbs.org/files/96/4771/4thYearAnnualReport.htm). The report uses information provided during the reporting period October 1, 2004, to September 30, 2005.

Topic Papers

Two reports describing the initiatives of the FY 2003 and FY 2004 Grantees in selected areas have been developed thus far. Information about each, with links, is provided below.

Activities and Accomplishments of the Family to Family Health Care Information and Education Center Grantees

This paper describes the activities of the 19 Family to Family Health Care Information and Education Center (FHIC) Grantees funded in FY 2003 and FY 2004 from CMS and 6 Grantees funded in FY 2002 by the Maternal and Child Health Bureau (MCHB). FHICs assist families of children with special health care needs. This paper provides information that states and stakeholders will find useful when planning or implementing similar initiatives. Read about the grant activities, implementation challenges, and accomplishments. Available at: http://hcbs.org/files/91/4526/FTFPaper.htm

Money Follows the Person Initiatives of the Systems Change Grantees: Final Report

This report highlights the work of nine FY 2003 Money Follows the Person Grantees, with a focus on Texas and Wisconsin. The report describes the initiatives and discusses policy and design factors that states should consider when developing MFP programs, including developing legislation and budget mechanisms for making transfers of funds, ensuring availability of services and housing, identifying potential consumers for transition, developing NFT infrastructure, and monitoring and quality assurance. Available at: http://hcbs.org/files/96/4768/Money_Follows_the_Person_Initiatives_of_the_Systems_Change_Grantees_Final_Report.htm

FY 2005 and 2006 Grants

CMS also funded the Systems Transformation Grants, which differ in scope from the previous grants. Unlike in previous years, the FY 2005 and FY 2006 grants were designed to provide states with a greater level of support to begin or continue initiatives to develop elements of a systems infrastructure that are critical to systems transformation. Therefore, fewer of these grants were funded, and Grantees were required to have more comprehensive initiatives than previous grants did.

Given the expectations for these Grantees, these grants are for a longer period (5 years), and a larger amount of funding was awarded than in previous years. For more information about the Systems Transformation (ST) Grantees, see the Real Choice Systems Change Grants: Compendium, Sixth Edition (http://www.hcbs.org/files/107/5337/Compendium6thEdition.htm).

Aging and Disability Resource Center Grants

CMS also collaborated with the Administration on Aging (AoA) to award grants to 43 states to establish Aging and Disability Resource Centers (ADRCs). These grants, funded in FY 2003, FY 2004, and FY 2005, were used to create single points of entry to obtain long-term services and supports and to establish a program to help individuals make informed choices about services and supports. Primary responsibility for these grants resides with the AoA. For more information about the accomplishments of the ADRC grantees, visit the ADRC Technical Assistance Exchange website (http://www.adrc-tae.org/tiki-index.php?page=AboutADRCsPublic).

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APPENDIX D
ENDNOTES

1 In FY 2005, reported Medicaid spending for nursing home expenditures was $47.2 billion; for intermediate care facilities for people with mental retardation (ICFs/MR), $12.1 billion. Expenditures for community-based LTC services were $35.2 billion, and HCBS waivers accounted for two-thirds of this spending. Data for 2006 will be available in early summer 2007 and will be posted to HCBS.org.

2 Refer to the Real Choice Systems Change Grant Program Fourth Year Report: Progress and Challenges of the FY 2003 and FY 2004 Grantees. Available at: http://hcbs.org/files/96/4771/4thYearAnnualReport.htm.

3 Data about consumer involvement were not collected from the 10 Family-to-Family Grantees.

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