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Cover Page Graphic: Real Choice Systems Change Grant Program: FY01 Nursing Facility Transition Grantees: Final Report, U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services Logos, August 2006

August 2006

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

Final Report

Janet O‘Keeffe, Dr.P.H., R.N.
Christine O‘Keeffe, B.A.
Kristin Siebenaler, M.P.A.
David Brown, M.S.
Wayne Anderson, Ph.D.
Angela Greene, M.B.A., M.S.
Deborah Osber, M.P.H.

Prepared for

MaryBeth Ribar
Melissa Hulbert
Centers for Medicare and Medicaid Services

7500 Security Boulevard, Mail Stop S2-14-26
Baltimore, Maryland 21244-1850

Submitted by

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

RTI Project Number 07959.002.006

*RTI International is a trade name of Research Triangle Institute


Table of Contents

Executive Summary

Part I. Overview, Remaining Challenges, Lessons Learned,
and Recommendations

1. Introduction

Overview of Systems Change Grants
FY 2001 Grantees
Nursing Facility Transitions Grants
Grant Reporting
Organization of this Report

2. Methods

Data Sources
Methods
Limitations of Approach

3. Overview of Enduring System Improvements

New Funding for Transition Services and Expenses
Increase in Waiver Slots for Individuals Transitioning
Flexible Funding Policies to Enable Money to Follow the Person
New Statutes, Policies, and Procedures to Facilitate Transition
Increased Independent Living Center Transition Capacity and Collaboration with State on Transitions
Housing
Continuing Use of Outreach, Educational, and Technical Materials
Grant Activities as a Catalyst for Additional Systems Change

4. Overview of Remaining Transition Barriers

Lack of Affordable and Accessible Housing
Lack of Home and Community Services
Lack of Funding for Case Management/Relocation Assistance
Restrictive Eligibility Criteria for Home and Community Services
Administrative and Bureaucratic Barriers
Resistance to Transition and Independent Living
Shortage of LTC Workers
Lack of Transportation
Other Barriers

5. Overview of Lessons Learned and Recommendations

Ensuring the Involvement of All Stakeholders
Design and Operation of NFT Programs

State Policy

6. Conclusions

Notes

Part II. Final Report Summaries

Alabama ILP
Alaska SP
Colorado SP
Connecticut SP
Georgia ILP
Georgia SP
Indiana SP
Maryland ILP
Maryland SP
Massachusetts SP
Michigan SP
New Hampshire SP
Texas ILP
Washington SP
West Virginia SP
Wisconsin ILP
Wisconsin SP

Exhibits

1. List of FY 2001 NFT Grants
2. Number of Nursing Home Residents Transitioned
3. Major Types of Enduring System Improvements Achieved by Grantees
4. Key Continuing Transition Barriers

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Executive Summary

Background

Starting in FY 2001, Congress began funding the Systems Change for Community Living Grants program (hereafter Systems Change grants) to help states increase home and community services and to improve their quality. The first round of three-year grants were awarded in September 30, 2001 and included two types of Nursing Facility Transition (NFT) grants: State Programs and Independent Living Partnerships (ILP). A total of 12 NFT State Program grants were awarded to state agencies, and five ILP grants were awarded to Independent Living Centers.

This report on the FY 2001 Nursing Facility Transition Grantees is the first in a series of final reports that RTI will prepare to document the outcomes of the Systems Change Grants.

Data Sources and Methods

The principal sources of data for this report are Grantees semi-annual, annual, and final reports, a topic paper on the NFT Grantees prepared by RTI in 2005, and Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant. RTI used these reports and materials to prepare final report summaries for each Grant, which were reviewed by key grant staff. In-depth interviews to obtain additional information and to clarify information were conducted by the RTI Project Director with each Grantee. The final summary was sent to grant staff for their final review and approval.

The long-term care (LTC) system is heavily tilted towards institutional care even though most people with disabilities prefer to live in the community. States, with the help of the federal government, are pursuing a number of strategies, including nursing facility transition programs, to create a more balanced system. This paper reports on the activities and experiences of the FY 2001 Nursing Facility Transition Grants of the Real Choice Systems Change program. Once fully implemented, nursing facility transition programs identify people in nursing homes or intermediate care facilities for the mentally retarded (ICF-MRs) who want to return to community living and help them to do so. These grants either directly established and operated nursing facility transition programs or helped to establish the infrastructure necessary for such programs.

Enduring System Improvements and Continuing Transition Barriers

Grantees reported a wide range of enduring system improvements that directly and indirectly helped to create a more balanced delivery system. These activities included:

Despite these accomplishments, Grantees found that many barriers remain to transitioning individuals from institutions to the community.

Conclusion

The information in this report is designed to help states address these barriers so that no one has to live in a nursing home or an ICF-MR simply due to the lack of adequate supports in the community. It is particularly important to assure this infrastructure is in place as the American population ages and the need for long-term care increases. Transitioning nursing home and other institutional residents to the community can reduce the need for new nursing home construction in the future and help create a system more responsive to the desires of people of all ages with disabilities.

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Part I.

FY 2001 Nursing Facility Transition Grants:
Overview of Enduring Changes, Remaining Challenges, and Lessons Learned and Recommendations

1. Introduction

Historically, the amount of public funding for home and community services has been less than that for institutional services. Still, over the past 20 years, many states have created long-term care (LTC) systems that enable people 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 1999 Supreme Court decision Olmstead v. L.C. has reinforced states‘ efforts and given legal weight to this policy direction. However, despite the movement to rebalance LTC systems in virtually all states, spending for community-based LTC services (Home and Community-Based Services [HCBS] waivers, personal care, and home health services) accounted for only 37 percent of all Medicaid LTC expenditures in fiscal year (FY) 2005.1

Overview of Systems Change Grants

Starting in FY 2001, Congress began funding the Systems Change for Community Living Grants program (hereafter Systems Change grants) to help states increase home and community services and to improve their quality. Since 2001, the Centers for Medicare & Medicaid Services (CMS), has awarded approximately $245 million in Systems Change grants to 50 states, the District of Columbia, Guam, the Northern Mariana Islands, and 10 Independent Living Centers. In all, 287 grants—not including technical assistance grants—have been awarded during five funding cycles, FY 2001 through FY 2005.

Bringing about enduring change in any state‘s LTC system is a difficult and complex undertaking that requires the involvement of many public and private entities. Recognizing this, the Systems Change grants are intended to be catalysts for incremental change. The grants‘ overriding purpose is to enable states to make enduring changes to the underlying framework upon which the LTC system operates in order to (1) improve access to and the availability of home and community services and supports, (2) increase consumer choice and control over their services, (3) improve quality management systems, and (4) enhance access to affordable and accessible housing.

FY 2001 Grantees

The first round of grants were awarded for a 3-year period on September 30, 2001. For most Grantees, implementation was delayed due to difficulties in hiring staff. Thus, while the original completion date for these Grantees was September 30, 2004, most received 12-month no-cost extensions and did not conclude their activities until September 30, 2005. These Grantees were required to file their final reports by December 31, 2005.

Nursing Facility Transitions Grants

A major goal of the Systems Change Grant Program is to build state capacity to support the transition of nursing home residents to a community-integrated living arrangement consistent with their needs and preferences.

Transitioning individuals from ICFs-MR to the community has been a central component of LTC policy for people with mental retardation and other developmental disabilities for over three decades. On the other hand, the recent emphasis on identifying people in nursing homes who want to live in the community and actively working to transition them out of the institution is a radical change in approach for older people and younger persons with physical disabilities. For the past 25 years, the overwhelming focus has been on preventing admissions to nursing homes, not discharging residents from them.

Nursing facility transition programs take as their premise that there are people living in nursing facilities who want to return to the community and can do so at a reasonable cost, and that some people admitted to nursing facilities improve rather than decline in functional status and also may desire to return to the community. These programs also reflect an increasing view that people with severe disabilities can successfully live in the community.

In FY 2001, CMS funded two types of Nursing Facility Transition (NFT) grants: State Programs and Independent Living Partnerships (ILP). A total of 12 NFT State Program grants were awarded to state agencies, and five ILP grants were awarded to Independent Living Centers.2 Exhibit 1 lists all of these grants.

Exhibit 1. List of FY 2001 NFT Grants

NFT-State Program NFT-Independent Living Partnership
Alaska Massachusetts Alabama
Colorado Michigan Georgia
Connecticut New Hampshire Maryland
Georgia Washington Texas
Indiana West Virginia Wisconsin
Maryland Wisconsin  

Grant Reporting

The Systems Change Grants have been awarded in late September of each year since FY 2001. CMS contracted with RTI International to compile a number of reports about the FY 2001, 2002, 2003, and 2004 Grantees, including (1) annual reports to detail the progress of the grants at a specific point in time and (2) papers on a single system change focus area.3

This report on the FY 2001 Nursing Facility Transition Grantees is the first in a series of final reports that RTI will prepare to document the outcomes of the Systems Change Grants. The second final report will cover the FY 2001 Community-integrated Personal Assistance Services and Supports Grantees and the Real Choice Grantees.4

Organization of this Report

Chapter 2 presents the methodology used to prepare this report. Chapter 3 provides an overview of enduring systems improvements brought about directly or indirectly through grant activities. Chapter 4 provides an overview of continuing challenges to nursing facility transitions that the Grantees identified. Chapter 5 provides an overview of lessons Grantees learned in implementing their initiatives, and their recommendations for operating NFT programs and changing state and federal policy to facilitate transition. Chapter 6 presents our conclusions.

Part II of this report presents final report summaries for each of the FY 2001 NFT Grantees.

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2. Methods

Data Sources

The principal sources of data for this report are: (1) the final year reports of the 17 FY 2001 Nursing Facility Transition Grantees, (2) their semi-annual and annual reports submitted during the grant period, (3) a topic paper on the NFT Grantees prepared by RTI in 2005,5 and (4) Grantee-prepared final reports and evaluation results as well as publications and materials developed under the grant, which were sent to CMS at the grant‘s completion.

Methods

Grantees submitted their final reports on December 31, 2005, and RTI staff reviewed these reports and the other materials cited above. RTI prepared a draft summary of each Grantee‘s final report, compiling the information into eight categories: primary purpose and major goals, role of key partners, major accomplishments and outcomes, enduring systems changes, key challenges, continuing transition barriers, lessons learned and recommendations, and key products.

The summaries were sent to the grant project directors for their review.6 The RTI project director then conducted an in-depth interview with the grant project director and other grant staff to obtain additional information and to clarify information obtained.

The RTI project director revised the summaries based on the interviews and sent them again to the grant project directors for their final review and approval. Once approved, these summaries became the primary data for this report. All of the final summaries for each Grantee are in Part II of this report.

Limitations of Approach

The information in this report is subject to the limitations of the data and the methods used. Specifically, the content of this report depends on both the quality and thoroughness of each Grantee‘s final report and other materials.

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3. Overview of Enduring System Improvements

Grantees engaged in numerous activities to develop, implement, and improve transition policies, processes, and programs and reported major accomplishments in these areas. These accomplishments are reported in the individual final report summaries for each grant in Part II of this report. A key accomplishment for the Grantees has been the transition of nursing home residents to community-integrated living arrangements. The primary goal for the Grantees was the building of a sustainable infrastructure for nursing home transition programs.

Exhibit 2 presents the total number of nursing facility residents transitioned and diverted from nursing homes during the grant period.7

Exhibit 2. Number of Nursing Home Residents Transitioned

State (Grant Type) Number Transitioned Number Diverted from Nursing Homes
n/a = not applicable.
Alabama (ILP) 45 n/a
Alaska (SP) 99 n/a
Colorado (SP) 124 n/a
Connecticut (SP) 101 n/a
Georgia (ILP) 221 56
Georgia (SP) 20 n/a
Indiana (SP) 110 19
Maryland (ILP) 23 n/a
Maryland (SP) 193 n/a
Massachusetts (SP) 34 9
Michigan (SP) 258 118
New Hampshire (SP) 15 n/a
Texas (ILP) n/a n/a
West Virginia (SP) 74 64
Washington (SP) 1,399 n/a
Wisconsin (ILP) 184 n/a
Wisconsin (SP) 471 n/a
Totals 3,371 266

Other accomplishments were instrumental in achieving the grants‘ primary goal: to assure that transition activities would be sustained after the grant ended through enduring system improvements and increased Independent Living Centers (ILC) and state transition capacity.

Grantees were successful in making enduring changes in several key areas. Exhibit 3 lists the enduring changes brought about directly or indirectly through Grantees‘ activities.

New Funding for Transition Services and Expenses

Successful transitions require case management services and expenditures to move and set up a new household in the community. The cost of these services and expenses will vary depending on the needs of the person transitioning. Federal law requires that Medicaid nursing home residents be allowed to retain at least $30 of their income each month as a "personal needs allowance" (PNA) to cover the costs of clothing, personal care items, telephone service, postage and similar expenses.8 States may allow a higher PNA and a majority have, recognizing that $30 is no longer adequate to afford nursing home residents a minimum level of comfort and dignity. However, in 2001, the highest PNA was $77 and 27 states had PNAs that were $40 a month or less, amounts that are not sufficient to cover transition expenses.

Grantees in 10 states worked successfully to amend waiver programs to include coverage for transition expenses. Most reported adding coverage for rent and utility security deposits, basic household goods, and moving expenses. In Washington, reimbursable transition expenses under the Aged, Blind and Disabled waiver include environmental modifications, independent living consultation services, adaptive and assistive technology, and consumable supplies such as incontinence pads. The Grantee noted that waiver funding is now used to leverage state general revenue funds earmarked for nursing facility transition to expand the types of supports that are available and to increase access to services.

In addition to covering transition services under its Aged and Disabled (A/D) waiver, Texas‘ Vocational Rehabilitation agency created a new policy to allow payment for relocation assistance as part of an individual‘s employment plan.

A few states are covering transition expenses solely with state dollars. New Hampshire is funding the transition of individuals with mental illness using state general funds. Georgia appropriated funds for transition expenses not covered by Medicaid. Connecticut used its grant to establish a Common Sense Fund to pay for transition expenses not covered through any other source, or when payment for these expenses is delayed due to complicated applications or lengthy waiting periods. Common Sense funds, which were limited to $1,000 per person, paid for expenses such as security deposits, furniture, utility deposits, and clothing. The State‘s new transition program also includes a Common Sense Fund, now funded by state general revenues. The Connecticut Association of Centers for Independent Living also has a Common Sense Fund for individuals not eligible for the state program, which is funded through voluntary contributions.

Exhibit 3. Major Types of Enduring System Improvements Achieved by Grantees

  AL-ILP AK-SP CO-SP CT-SP GA-ILP GA-SP IN-SP MD-ILP MD-SP MA-SP MI-SP NH-SP TX-ILP WA-SP WV-SP WI-ILP WI-SP Total States
New Funding for Transition
Services and Expenses
    15
a. Transition Services Added
to Waiver
              10
b. New Funding for Transition
Services and Expenses (Medicaid
and/or non-Medicaid)
                      6
c. New non-Medicaid Funding
for HCBS When no Waiver Slot
is Available
                              2
Increase in Waiver Slots for
People Transitioning
                        5
Flexible Funding Policies to
Enable Money to Follow the Person
                        5
New Statutes, Policies, and
Procedures to Facilitate Transition
        13
Increased ILC Transition
Capacity and Collaboration with
State on Transitions
                    7
New Policy to Increase Access
to Affordable and Accessible
Housing
                              2
Continuing Use of Grant-Funded
Outreach, Educational, and
Technical Materials
                  8

Massachusetts added transitional support as a service under the Elderly and Mental Retardation/Developmental Disabilities (MR/DD) waivers. These supports include those needed to locate accessible, affordable housing and to develop community skills that will facilitate transition. Examples include moving-related expenses (e.g., security deposits, furnishings, deposits for utility or services access, pest eradication, allergen control, or one-time cleaning prior to occupancy), and costs for recruitment, screening, and training of staff who will support the individual in the community.

Michigan amended its Choice waiver program to allow waiver service providers to furnish up to $3,000 of transition services. Plans projected to total more than $3,000, which includes both transition and support/coordination costs, must be pre-approved. Allowable transition costs include (1) one-time deposits to secure housing or to obtain a lease; (2) utility hook-ups and deposits; (3) furniture, appliances, and moving expenses; and (4) one-time cleaning expenses, including pest eradication and allergen control. The State has also developed a permanent fund to reimburse transition costs not covered by other sources, funded with civil monetary penalties levied on nursing facilities for quality of care violations.

Wisconsin‘s Governor has instituted a Community Relocation Initiative with a goal of transitioning 1,400 individuals. The initiative allows individuals who have been in a nursing home longer than 90 days to obtain transition funds and is providing a means to continue the activities instituted under the NFT State Program Grant.

Finally, some states have chosen to continue the transition program implemented by the grant by using state general revenue funds. Connecticut is now funding five full-time transition coordinators to provide outreach and transition services and one full-time statewide coordinator. The program also funds a toll-free line for nursing facility residents, giving them direct access to a transition coordinator. The program will collect data and conduct analyses to monitor and evaluate the effectiveness of transition procedures.

Increase in Waiver Slots for Individuals Transitioning

Money Follows the Person (MFP) policies allow Medicaid funds budgeted for institutional services to be spent on home and community services when individuals in nursing homes and intermediate care facilities for persons with mental retardation (ICF-MRs) move to the community. Without an MFP policy, waiting lists for waiver services are a major transition barrier for institutional residents wanting to move to the community. To address this barrier, five states increased the number of waiver slots solely for people who are transitioning to the community. When Connecticut‘s Personal Care Assistant waiver program reached its cap on the number of beneficiaries in July 2003, the grant‘s impact analysis was used to support a request for additional waiver slots. In January 2004, the Governor‘s budget recommendation included $2.2 million for 200 additional slots, which the legislature approved in June 2004.

Michigan has authorized new waiver slots for persons who are transitioning if they have been in a nursing facility more than 6 months. Exceptions to the 6-month rule may be granted in a limited number of circumstances; for example, if individuals are at risk of losing their housing. Additionally, for each successful move to the community, the State will provide transition costs and waiver services for one additional Medicaid nursing facility resident without regard to the length of stay.

When Georgia‘s grant ended, the State appropriated $7.25 million for non-Medicaid covered transition expenses and the first year of home and community services for transitioning individuals for whom there were no waiver slots. The legislature specified a maximum of $50,000 per person for up to 145 individuals. Only when individuals have been supported with these funds for a year does the State create a new waiver slot to continue services.

Indiana enacted legislation in 2002 to increase the income limit for waiver services from 100 percent of Supplemental Security Income (SSI) to 300 percent of SSI and increased the number of waiver slots, but required a study to determine the fiscal implications of these changes. Grant funds were used to commission a report. The State initially said the changes would be too expensive, but decided in April 2006 to implement them in July 2006.

Flexible Funding Policies to Enable Money to Follow the Person

Four states developed or continued flexible funding mechanisms to facilitate transitions. Texas authorized the continuation of its MFP policy.9 As discussed just above, Georgia has allocated state funds to cover one year of home and community services for 145 transitioning individuals for whom there are no waiver slots and creates a slot if they are still in the community after a year.

To address its long waiting lists for waiver services, Wisconsin enacted an MFP policy for individuals in nursing homes and intermediate care facilities for persons with mental retardation and other developmental disabilities. Prior to the implementation of this policy, the state budget allocated a certain number of slots to the Department and additional slots could only be generated if a person left a nursing home that was closing or downsizing and the bed was closed.

To assure that Medicaid-eligible nursing facility residents have access to waiver services when no slots are available, Maryland enacted the Money Follows the Individual Act, which makes it requires admission to an HCBS waiver program if: (1) an individual is living in a nursing home at the time of the application for waiver services, (2) the nursing home services for the individual were paid by the Medicaid for at least 30 consecutive days immediately prior to the application, (3) the individual meets all of the eligibility criteria for participation in the waiver program, and (4) the home and community services provided to the individual would qualify for federal matching funds.

New Statutes, Policies, and Procedures to Facilitate Transition

Most Grantees reported the implementation of new policies and procedures to address a wide range of transition challenges and barriers. For example, the Colorado ILCs discussed eligibility and application barriers with the state, which eliminated them by revising the eligibility and application process.

A major challenge states face when developing successful transition programs is designing and implementing feasible and effective processes for identifying nursing home residents who wish to transition to community living. In Georgia, the State has hired a contractor to use the minimum data set (MDS) to help identify individuals in a nursing facility who may want to transition to a community setting. The names of these individuals are given to a case management agency that provides transition services. The State is also using a person-centered care plan developed under the grant to facilitate transitions.

Several Grantees reported resistance to transition activities among nursing home staff, but in Maryland, the resistance was so great that it necessitated the enactment of two statutes to address it. In response to the refusal of several nursing homes to allow Center for Independent Living (CIL) staff to meet with its residents, the State enacted a law (generally referred to as the Nursing Home Access Act) requiring nursing facilities to allow advocates and case managers to discuss transition options with nursing facility residents. The law states that CIL staff and employees or representatives of protection and advocacy agencies shall have reasonable and unaccompanied access to residents of public or private nursing facilities that receive Medicaid reimbursement, to provide information, training, and referral to home and community services programs that can meet their needs. The legislation also requires nursing facilities to provide newly admitted residents with information about home and community service options.

To further assure that nursing home residents have information about community living options, Maryland also enacted the Money Follows the Individual Accountability Act, which requires a nursing facility (1) to refer a resident to the Department of Health and Mental Hygiene or its designee for assistance in obtaining home and community services; (2) to review quarterly assessments to identify individuals indicating a preference to live in the community; and (3) to provide specified residents with information and assistance, including transition assistance.

Maryland also modified its Nurse Practice Act to permit cognitively intact adults who are not physically able to self-administer medications to direct personal care and other staff or family members or friends to administer them. By decreasing the cost of in-home services, this modification made community placements less expensive for some individuals.

Another barrier that can impede transition is lengthy waiting periods for waiver eligibility determination, a particular problem when services have to be coordinated with new housing arrangements. To address this problem, Alaska developed an administrative infrastructure to fast-track the waiver assessment process for persons applying for transition funds. Based on the grant‘s demonstrated cost savings, Alaska also authorized state general funds to continue the transition program beyond the grant period.

One approach to facilitate transition when a state has a waiting list but no MFP policy is to give priority for waiver slots to individuals who are transitioning. Indiana took this approach, amending its waiver to prioritize the waiting list so that persons waiting to transition are moved to the top of the list.

The lack of funding for intensive case management services prior to transition can be a major barrier. To address this, Connecticut expanded the use of targeted case management for persons transitioning from nursing homes from 30 days pretransition to 180 days. The targeted case management option is only available for people with mental illness, but the State is considering covering additional eligibility groups.

As a result of high nursing home expenditure and the increased focus on nursing facility transition, several states recognized the need to prevent both unnecessary admissions and unnecessarily long stays that resulted in a loss of housing. Massachusetts instituted in-person screening for Medicaid eligible and potentially eligible nursing facility residents to insure that facilities begin discharge planning at the time of admission. Similarly, New Hampshire now requires an in-person consultation for every Medicaid-eligible individual seeking nursing home placement or home and community services to ensure that community options have been explored.

A potential transition barrier for individuals with extensive physical impairments is that HCBS programs may not provide the services needed to live safely in the community. This was the case in West Virginia where, prior to the grant, the state plan offered more hours of assistance with activities of daily living (ADL) than did the waiver program and waiver participants who needed more assistance were not allowed to get additional hours through the state plan benefit. The grant staff‘s recommendations for addressing transition barriers led the State to change the regulations so that Aged and Disabled waiver participants can now obtain personal care services through the state plan if they need more hours than the waiver will cover.

Increased Independent Living Center Transition Capacity and Collaboration with State on Transitions

A primary purpose of the NFT Grants was to increase the capacity of ILCs to provide transition services and to foster an effective means by which ILCs and state agencies could learn from each other, share effective practices, actively assist one another during transitions, and disseminate the lessons learned. All of the ILP Grantees and two states reported enduring accomplishments in these areas.

In Alabama, ILCs gained considerable transition knowledge and experience during the grant, and now recognize nursing facility transitions as a priority. After the grant ended, ILCs continue to offer transition services using their own funds. These services include case management and assistance identifying accessible housing, obtaining home modifications, and identifying and helping consumers access public transportation.

In Texas, state agency staff, CIL staff, and other stakeholders have increased their knowledge about best transition practices and how to develop community services infrastructure. When the State issued a request for proposals to provide relocation services statewide, all four contracts were awarded to CILs based in large part on the knowledge and expertise they gained under the grant.

In Washington, the independent living network has traditionally been involved in providing independent living services to individuals living in the community but were rarely involved in transitions. The grant has built the capacity of this network to facilitate and support nursing facility transitions, particularly for long-term nursing home residents. Independent living consultant services are now a resource for local case managers in transition planning.

In Wisconsin, ILP grant staff established a consistent outreach process. All the state‘s ILCs now have staff trained in nursing facility outreach and transitioning strategies. They are also part of the State‘s transition teams. Although the State has not allocated funding to cover their services, ILCs continue to provide a greater amount of transition services than they did before the NFT-ILP grant. Nursing facilities and county staff view ILC staff as a resource for transition activities and are more willing to work with them. ILCs are now receiving increased referrals for transitions from a variety of sources. Involving ILCs in transitioning also is providing consumers with peer support, skill training, and advocacy services that they would otherwise not receive.

Grantees also reported increased transition capacity among state staff. In Washington, state-employed case managers have broadened their scope of work to include the transition of long-stay as well as short-stay nursing facility residents, and are focusing their efforts on persons of all ages rather than primarily on those age 65 and older. In Maryland, the State created a housing specialist position in the waiver‘s case management agency.

Several Grantees reported that collaborative working relationships with nursing facilities have continued after the grants ended, with nursing facility staff working on transitions with Medicaid and independent case mangers who conduct transition assessments. In Maryland, nursing facility administrators and social workers and directors of nursing who were previously opposed to allowing advocates to work with nursing facility residents now rely on CIL staff to provide assistance with transition planning. In Georgia, the state program grant staff established a referral system between the two nursing home chains‘ facilities and the areas‘ CILs and Area Agencies on Aging, which has been sustained after the grant ended.

Housing

Another purpose of the NFT grants was to improve collaboration among transition stakeholders, including human service agencies, state and federal housing finance agencies, and Public Housing Authorities to make the most effective use of housing options, including the use of HUD Section 8 rental vouchers for individuals who make the transition.

Every Grantee cited the lack of affordable and accessible housing as a major transition barrier. However, because improving access to housing was not a primary goal for most of the NFT Grantees, only two Grantees reported enduring changes related to housing.

Maryland provided incentives for developers to set aside a greater percentage of new housing units for people with disabilities than under federal requirements. As a result, 98 new units will be set aside for people with disabilities. The State also instituted a new requirement for developers to have a marketing strategy and to work with disability organizations to help assure that persons with disabilities use these units. The State also now requires that units set aside for individuals with disabilities be held for 30 days when they become vacant to allow time to apply for and coordinate the services, rental assistance, and other activities that need to be completed before an individual with a disability can move into the unit.

Housing authorities in some Maryland counties changed their priority criteria on housing voucher set-asides to allow persons in a nursing facility who are on the housing voucher list to move to the top of the list when they become eligible for waiver services. The Spokane Housing Authority in Washington has designated individuals leaving nursing facilities as “homeless,” enabling them to bypass a 2-year waiting list for rental assistance vouchers. An ILC in Spokane now has an ongoing process for assisting nursing facility residents with housing voucher applications. Waiver transition funds or state general funds pay for this service.

Connecticut grant staff collaborated with the state housing authority to change its voucher administration plan to prioritize 50 Section 8 vouchers annually for transitioning individuals. Housing and Urban Development (HUD) approved the change in July 2003 and evaluation data showed that the availability of the vouchers decreased transition time by an average of 79 days. However, due to administrative issues with the housing authority, the vouchers have been discontinued and the State‘s Rental Assistance Program is now working with the NFT program to provide housing subsidies to individuals enrolled in the program.

Continuing Use of Outreach, Educational, and Technical Materials

Eight Grantees reported that transition materials developed under the grant continue to be used after their grants ended. Texas noted that other states as well were using their transition assessment and service planning materials, which are posted on the HCBS.org Web site. Transition training materials developed under the Texas-ILP grant were also used by the State‘s Real Choice Systems Change MFP grant (FY03) to develop a structured, consistent process for regional coordination of transition activities. Regional coordination groups include contracted relocation services providers, state agency regional supervisors, and the MFP grantee, and they address specific transition problems or issues at an individual and systems level.

Grant Activities as a Catalyst for Additional Systems Change

In many states, grant activities have been the catalyst for additional systems improvements not originally included in the grant‘s goals. In some states, advisory committees, task forces, and other coalitions formed to implement the grant are continuing work on transition policy. In Alabama, for example, the project implementation team is now functioning as a coalition working to enact policy changes to increase the availability of home and community services. The team worked with members of the state legislature to introduce a budgetary amendment to establish an MFP policy modeled on Texas‘ Rider 37 and is also advocating for additional funding from the Department of Rehabilitation Services to continue project activities, including independent living skills training, peer support, and transition coordination.

Due in part to increased awareness that many nursing home residents can be served in the community and demonstrated cost savings through the transition program, Indiana has undertaken a number of initiatives to rebalance its LTC system. The Indiana Director of Aging and the Secretary of the Family and Social Services Administration have made a commitment to both reduce the number of nursing home beds and to reduce nursing home occupancy by 25 percent by state FY 2009. The State has also established a goal to transition 1,500 Medicaid-eligible nursing home residents to the community over the next 18 months.

Grant activities in New Hampshire have improved access to services by improving communication among multiple service systems, including the Bureau of Behavioral Health and the Bureau of Elderly and Adult Services. Prior to the grant, persons with multiple disabilities might have had difficulty obtaining the services they need because they are offered through different programs and administered by different state agencies. This was particularly true for individuals with mental illness applying for waiver services. With improved education for field staff, persons with mental illness who meet nursing home level-of-care criteria now face fewer barriers to obtaining waiver services.

In Washington, a multidisciplinary housing team established during the grant period is continuing its work after the grant has ended. The team includes housing authority staff, home and community services social workers, representatives from developmental disabilities service agencies and veterans affairs, and mental health advocates. The team meets monthly to work on a range of issues, including streamlining the housing voucher application process, arranging for intensive housing searches for nursing facility residents when needed, and coordinating with the relevant community service system to ensure appropriate services and supports are in place at the time of transition and thereafter.

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4. Overview of Remaining Transition Barriers

Grantees successfully addressed many transition challenges but reported numerous remaining barriers. The major barriers are listed in Exhibit 4 and discussed below.

Lack of Affordable and Accessible Housing

Virtually all Grantees cited the lack of affordable housing and residential care options to address the varied needs of persons with disabilities as they age as a continuing transition barrier in both rural and urban areas. The lack of housing is particularly a problem for individuals eligible for the SSI program, who may not be able to afford housing even with rental assistance. Due to the housing shortage, many individuals who transitioned had to live with family members or in community residential settings because private housing was difficult to find.

Grantees cited a number of factors that contribute to the lack of accessible and affordable housing including: (1) 2- to 3-year waiting lists for subsidized housing and Section 8 vouchers, (2) a low vacancy rate and high demand for apartments, and (3) no requirements or incentives for property owners to list vacancies in housing registries. The HUD requirement for a clear credit history and no criminal background also excluded some nursing facility residents from rental assistance programs.

Some Grantees noted the lack of a full continuum of supportive housing, including group homes, assisted living, supported living, and other residential options, particularly for older adults with mental illness. One Grantee noted that residential care settings that might be suitable have specific admission requirements that some individuals cannot meet, such as the need to be continent and to be able to self-manage medications and self-administer insulin injections.

Although some Grantees were successful in having housing authorities set aside vouchers for transitioning residents, challenges remained in finding accessible, affordable apartments in a very competitive rental market and landlords who are willing to accept vouchers and have environmental modifications made. Wisconsin noted that some housing providers and private landlords are reluctant to rent to people with disabilities, particularly those with mental illness, because they view them as a problem group.

Successful housing searches in a competitive market require a swift, rigorous, and thorough approach and several Grantees said that staff resources were insufficient to carry out such searches. Limited accessible transportation adds to the challenge.

Exhibit 4. Key Continuing Transition Barriers

  AL-SP AK-SP CO-SP CT-SP GA-ILP GA-SP IN-SP MD-ILP MD-SP MA-SP MI-SP NH-SP TX-ILP WA-SP WV-SP WI-ILP WI-SP TOTAL
Lack of Affordable and
Accessible Housing
  16
Lack of Home and
Community Services
        13
Lack of Funding for Case
Management/Relocation
Assistance
                9
Restrictive Eligibility
Criteria for HCBS
                      6
Administrative and
Bureaucratic Barriers
            11
Resistance to Transition
and Independent Living
                  8
Shortage of LTC Workers                         5
Lack of Transportation                     7

Lack of Home and Community Services

Another frequently cited transition challenge was a lack of home and community services, exacerbated by waiver waiting lists and freezes on waiver slots. Some Grantees noted that undertaking transitions was especially challenging in remote rural areas with few community resources. One Grantee stated that allowing states to offer waiver services on a less than statewide basis creates inequities in access to home and community services for nursing home residents seeking transition. West Virginia noted that a prior court decision prohibiting the prioritization of individuals on a waiting list for the MR/DD waiver prevented discussions about prioritizing the State‘s A/D waiver waiting list for nursing home residents wishing to transition.

In Massachusetts, because there is no HCBS waiver program for persons under age 60 who have only medical needs or physical disabilities, it was difficult to put together a comprehensive service package that would meet the needs of this population. In addition, once in the community, the consumer alone has total responsibility for monitoring and maintaining services.

In addition to a lack of waiver slots, some Grantees cited inadequate budgets for home and community services, particularly for long-term nursing home residents with complex medical needs or who need assistance or supervision to be available 24 hours a day. One Grantee noted that some individuals with multiple diagnoses require services from more than one waiver, which can be very complex to arrange and coordinate.

Others cited a lack of specific services, such as resources for financial management, surrogate decision-makers, guardians, and representative payees for individuals with cognitive impairment. Wisconsin cited lack of timely access to home modifications, durable medical equipment, and assistive devices as significant transition barriers. In some cases, funding for these items was denied.

While 10 states added transition services to their waiver programs, others did not. ILP grant staff in Georgia said that lack of waiver coverage for transition expenses and insufficient waiver slots are continuing transition barriers.

Finally, one Grantee noted that the lack of parity for mental health benefits, particularly in Medicare, and the lack of a wellness and recovery treatment approach for older adults with mental illness in the community prevented transition because individuals with mental illness often cannot obtain the treatment and other services they need to successfully transition to and remain in the community.

Lack of Funding for Case Management/Relocation Assistance

Nine Grantees cited lack of funding for case management and relocation assistance as a continuing transition barrier. Several Grantees noted that transitions in sparsely populated and geographically isolated areas with limited community services required more intensive case management, as did transitions for individuals with complex medical needs. Washington noted that the ability of the State‘s six CILs to support nursing facility transitions statewide is constrained by a large geographic area to cover as well as a lack of community services.

In Maryland, the ILP grant provided funding and a process for CILs to successfully partner with the State on transition activities. But because the funding and the process were not sustained when the grant ended, the State now has no formal mechanism or reimbursement to assure participation by, or collaboration with, the CILs in the transition process. The State has a contract with another agency to provide case management services for waiver clients, including transition services. CILs can be reimbursed for the provision of some training in consumer direction for people who are transitioning, but this service is infrequently provided. CILs are attempting to continue transition activities with existing staff but are limited by tight budgets.

Massachusetts noted that relocation assistance through targeted case management is available to only a few Medicaid-eligible consumers, and that even for those covered under existing HCBS waivers (MR/DD, Elderly, Traumatic Brain Injury), relocation supports are limited. While case management is available to all elderly persons, not just those eligible for waiver services, it is not at the level needed to plan and implement a move.

Targeted case management is available under the state plan only to young persons with DD under the age of 18 and to persons with MR of all ages whether or not they are under the waiver. However, the targeted case management benefit is also not at the level needed to plan and implement a move. Consequently, both elderly persons and younger adults with DD receiving case management also need “relocation assistance,” which is a much more intensive level of assistance to assure that all supports and resources (not just those funded by Medicaid) are in place to enable the person to return to and/or remain in the community.

Some Grantees noted that community agencies and nursing facilities do not have the resources to continue providing the type of relocation assistance provided through the grant. One noted that community providers are not reimbursed to participate in planning meetings prior to discharge and often cannot complete an assessment until a firm discharge date is given. Michigan noted that in most areas of the State, agencies are eligible for only $3,000 per person for transition services and transition program growth is slow. Grant staff believe that paying a higher rate to cover start-up and training costs would provide an incentive to agencies to start transition programs.

Texas reported that it has four contracts with CILs to provide relocation services statewide. Relocation services are more like intensive case management and include assessment of community needs, identification of housing, coordination of medical and personal care needs, transportation, financial supports, and completing the move to a community residence. In Texas, about 10 percent of individuals who transition need these services, according to the Grantee, because they have extensive or complex needs that cannot be adequately addressed by the waiver or other state case management services. However, relocation services are funded by state general revenue funds and are capped. To assure the availability of these services for all who need them and minimize state expenditures, the Grantee believes that the State should cover relocation services either as a Medicaid administrative expense through the waiver program or through the targeted case management option.

Washington noted that because case managers are required to prioritize newly admitted Medicaid-eligible residents for discharge and transition and have limited time to spend on transition activities, they generally work on short-stay resident discharges. Short-stay residents typically have current housing and strong connections to their family and other community supports—key factors assuring a successful transition. Because long-stay residents lack housing, often have weakened community connections, and can be dependent on the institutional environment, their needs can exceed case managers‘ ability and time to address them. During the grant, the collaboration between case managers and independent living providers who were able to provide intensive supports for these residents was critical to their successful transition.

Restrictive Eligibility Criteria for Home and Community Services

A few Grantees noted that although their states had several waiver programs, people who need services can “fall through the cracks” due to restrictive diagnostic eligibility criteria, restrictive financial eligibility criteria, and a lack of comprehensive services. For example, in Alabama, one waiver covers only individuals over age 18 with specific medical diagnoses, such as spinal cord injury and traumatic brain injury, and the Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome (HIV/AIDS) waiver is limited to individuals over age 21 with HIV or AIDS. The Elderly and Disabled waiver has no diagnostic requirements but has more stringent financial eligibility criteria than the other waiver programs: 100 percent of SSI compared to 300 percent of SSI. Other Grantees noted that waivers cover different services and that consumers sometimes have to choose between two waivers based on which one will meet most but not all of their needs.

Connecticut noted that the State has several waiver programs for individuals with different needs but some individuals do not meet the specific eligibility criteria for any of these programs and still need services. For example, the Personal Care Assistant waiver requires participants to self direct or have a conservator. Another problem is that a person with multiple minor needs may not meet a waiver program‘s functional criteria if it requires a person to have moderate to severe needs. Alternatively, individuals may be eligible for a waiver program that does not provide all of the services they need. For example, the Personal Care Assistant waiver provides only personal care services, but a person may also need home modifications and a personal emergency response system.

In Massachusetts, a large number of nursing home residents who wanted to transition had chronic diseases characterized by episodic flare-ups and remissions (e.g., mental illness, diabetes, multiple sclerosis). Their fluctuating needs for LTC services made it very difficult for them to consistently meet service eligibility criteria and maintain supports. Additionally, the Grantee noted that the eligibility criteria for personal assistance services under the state plan are stringent. To qualify, a person must need physical assistance with at least two ADLs. Although meal preparation and medication oversight and reminders were the most common support needs for many consumers, these needs are no longer counted when determining eligibility.

New Hampshire said that the State‘s nursing home and waiver level-of-care eligibility criteria require applicants to have a medical need, which excludes many individuals with LTC needs, including those with mental illness. West Virginia noted that some nursing home residents do not meet either the waiver target group criteria, financial eligibility criteria, or the level-of-care criteria. Some who meet all the criteria need services not provided under the waiver, such as ventilator care.

Several states noted that some nursing home residents did not meet waiver level-of-care criteria when seeking transition. Georgia ILP grant staff said that a little less than half of the people transitioned under the grant required no services once living in the community. A few persons needed only home modifications, such as a ramp. They noted that because setting up and coordinating home and community services takes a lot of time and effort, hospital discharge planners often send people to a nursing home after a hospitalization. Once there, they lose their housing, their savings, and their community support network, and need help to transition. In some cases, individuals needed only money for utility security deposits.

Administrative and Bureaucratic Barriers

Eleven Grantees cited a wide range of administrative and bureaucratic transition barriers. In Alabama, inaccurate agency records were not corrected in a timely manner and delayed transitions (e.g., a nursing home resident was listed as deceased by the Social Security Administration and a consumer living in the community could not get waiver services for more than 9 months because the State‘s records indicated he was still in a nursing home). Alaska noted that delays in waiver eligibility determinations and service plan development presented barriers for some individuals.

Colorado found that establishing billing procedures and obtaining federal financial participation for the new waiver transition services were very complicated and time consuming, particularly given the small amount of money involved. The maximum reimbursement for transition services under the waiver is $2,000, which includes $800 for transition navigator services and $1,200 for one-time expenses such as security and utility deposits. Although only $100 of this amount is allowed for the initial purchase of basic food items such as milk, the State had to spend a lot of time working with CMS regional and central offices to provide assurances that this amount would not be misused to purchase nonessential food items.

In Massachusetts, consumers and service planners found it difficult and time-consuming to navigate multiple programs and initiatives that provide services to discrete target populations, each with its own eligibility rules, service names, and definitions. The difficulty was increased for individuals with multiple disabilities or co-occurring health conditions because duplicative applications and documentation requirements often led to service delays. Additionally, many programs have a “payer of last resort” policy that requires consumers to expend considerable time and energy documenting their inability to obtain services from other programs.

Massachusetts also noted that consumers cannot obtain equipment they will need in the community until after they transition. As a result, the opportunity is lost to gain familiarity with the equipment with the assistance of nursing facility staff, including occupational and physical therapists. Similarly, individuals are not eligible for community services until after their move. While eligibility is being determined and services authorized, there is a delay in the receipt of essential services such as medications and personal care. The resulting delays can result in medical emergencies and a return to the nursing home.

In New Hampshire, the eligibility determination process for waiver services sometimes took several months and other service arrangements needed to be made before waiver services were authorized. Arranging all of the necessary services and supports in a timely and coordinated manner has been extremely challenging; for example, establishing eligibility for services, arranging for guardians, establishing a representative payee, and obtaining information release forms required by the Health Insurance Portability and Affordability Act. In some cases, it has been difficult to obtain a consultation for individuals with multiple co-occurring conditions, including developmental disabilities, substance abuse disorders, acquired brain injury, and complex medical conditions. In other cases, “turf” issues or lack of staff expertise regarding individuals‘ specific needs caused delays.

Resistance to Transition and Independent Living

Eight Grantees noted resistance to transition as a major barrier. Resistance is found among family members who do not believe their relative can live in the community or who do not want to have to provide informal care. It is also found among nursing staff who do not believe the individuals can be safely served in the community, particularly those with extensive functional limitations or medical and nursing needs. One Grantee noted the lack of support for the independent living philosophy among physicians and other health care professionals. While such resistance may be overcome with education, it can require a considerable amount of a case manager‘s time to address and can slow the transition process. However, one Grantee said that opposition or lack of support from families totally impeded transition in some cases, regardless of the person‘s potential or desire for transition.

Shortage of LTC Workers

Five Grantees cited the LTC workforce shortage as a transition barrier, some noting that low reimbursement rates have a negative impact on the availability of workers and community services. Other Grantees noted that some transitioning residents did not receive community support services in a timely fashion due to a shortage of direct service workers. One Grantee said that addressing workforce issues is difficult because the State does not employ direct care workers and efforts to solve workforce shortages were dependent on multiple local and private agencies over which the State has only minimal control.

Lack of Transportation

Several Grantees noted that the lack of transportation has a negative impact on both individuals with disabilities who want to live in the community and on the personal care workers they need. Because most workers have very low incomes and no cars, they depend on public transportation. Individuals who transition to areas with no public transportation may feel more socially isolated than they did in the nursing home. One Grantee reported that some transitioned individuals returned to the nursing home after a few months in the community because they missed friends and nursing home activities.

Other Barriers

A few Grantees noted that some residents‘ medical needs, mental health needs, and logistical and personal care needs presented significant transition challenges. Some participants were unable to follow a treatment plan or had a lack of insight into their illness. Others‘ needs exceeded available community resources, including housing, staff support, and waiver services. Sometimes participants‘ desires did not match their needs or proved unrealistic. Many were not familiar with the different types of housing, or feared or resisted unfamiliar situations, such as group homes or adult medical day care. Some candidates did not want a “roommate” yet needed live-in assistance. Individuals who needed substance abuse treatment had difficulty obtaining it in the community. And some individuals with medical problems that needed ongoing nursing oversight could not be served either due to a lack of nursing services or because the cost of such services in the community was too high.

One Grantee noted that the high turnover of nursing facility social workers/discharge planners hindered transitions because of the need for new training. Another obstacle was nursing home reluctance to purchase equipment, such as motorized wheelchairs, which some residents may need to look for community housing. Additional obstacles include conflicts between the individual transitioning and family members or legal representatives and delays in Social Security payments.

ILP grant staff in Wisconsin reported the lack of a systematic method to identify individuals who want to transition and their inability to use MDS data due to help identify residents with transition potential. The ILCs continue to pursue collaboration with state staff to use MDS data, but to date have not been successful.

Grantees also mentioned larger systemic and societal transition barriers. One Grantee said a major transition barrier is poverty because many individuals with disabilities simply cannot afford to live in the community. Several Grantees said that a federal barrier to transition is that the Medicaid program considers home and community services to be optional while nursing home services are mandatory. Others noted that while grant activities have brought about significant changes in state policies that assist people who want to transition from nursing facilities, state Medicaid funding retains an institutional bias. One Grantee said in order for the State‘s Olmstead plan to be fully realized, institutions need to be the last resort for the provision of LTC services.

One Grantee felt that the lack of global budgeting for all of the State‘s LTC services is a barrier to serving consumers in the community setting of their choice, and a few Grantees said that until all states enact Money Follows the Person funding, people with disabilities will not be assured a choice between home and community services and institutional care.

Finally, a number of Grantees went beyond transition policy and noted the need for nursing home diversion programs. A Grantee in Indiana said that the State‘s pre-admission screening law has numerous exceptions, many people are admitted to nursing homes without being screened, and the process does not discuss the range of home and community service options. Wisconsin said that the lack of an effective statewide nursing home diversion program and a long waiting list for waiver services results in many people being unnecessarily institutionalized and losing their homes. Once in a nursing home, SSI-eligible residents receive only a personal needs allowance of only $30 a month, making it impossible to save enough to transition back to the community without government assistance.

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5. Overview of Lessons Learned and Recommendations

In the course of implementing their initiatives, Grantees obtained experience in developing and operating NFT programs, as well as working to develop and implement policies to assure their sustainability. Grantees reported numerous lessons learned, which they believe can assist other states and ILCs to develop sustainable NFT programs. They also cited many continuing transition barriers and made recommendations to address them.

Ensuring the Involvement of All Stakeholders

Most Grantees agreed that prior to implementing an NFT initiative or program, it is essential to obtain buy-in from all stakeholders and assure that they are “on board” from the outset. Stakeholders include consumers, families, nursing facility administrators and discharge planners, HCBS providers, ILCs, consumer advocates, housing developers, housing authorities, and Medicaid agency staff. One Grantee stressed the importance of including cross-disability and consumer-controlled organizations in the development of NFT policy. The basic lesson learned was that any planning to introduce or change policies or practices should involve individuals who will be affected by the changes.

They specifically stressed the importance of developing strong collegial relationships with nursing facility staff to assure their involvement as full partners both in individual transition efforts and in any rethinking and redesign of the current LTC system. They also highlighted the importance of helping advocates and providers find common ground regarding goals and parameters for working together.

One Grantee reported that some ILCs and nursing facilities found it extremely difficult to work together. Involving the Medicaid agency in the early stages of transition initiatives could have helped to facilitate more cooperative and effective working relationships by, for example, having agency staff meet with state nursing home associations and ILCs to discuss and establish in advance how stakeholders will communicate and work together on transition activities. While efforts to involve stakeholders may be time consuming, the good will and improved communication they can generate will ultimately contribute to successful transitions.

Another Grantee felt that two approaches were needed for a successful transition program: (1) a “top-down” approach eliciting the involvement and support of the leadership of key agencies to reduce barriers and urge cooperation, and (2) a “bottom-up” approach of fostering cooperative staff relationships in the field to ease referrals and address case specifics.

For example, some nursing home staff were reluctant to refer individuals for transition for a variety of reasons, including financial disincentives and fear that residents would not have their needs met in the community. When grant staff developed relationships with nursing home staff and addressed their concerns, they were more likely to make referrals. To increase referrals of potential transition candidates by nursing facilities, it can also be helpful if agency directors communicate with them about the State‘s transition goals.

Finally, a Grantee emphasized the importance of developing the internal infrastructure needed to assure successful transitions, including (1) developing strong relationships among the community organizations that provide services and supports; (2) identifying a range of community resources for individuals, including overall support as well as social and recreational opportunities; and (3) ensuring that the entities responsible for case management, such as AAAs, prioritize the transition process and designate specific staff to focus on transition.

Design and Operation of NFT Programs

When designing and implementing an NFT program, Grantees noted the importance of utilizing technical assistance to learn about best practices, seeking information from other states to identify solutions to common challenges, and utilizing a quality assurance framework for both transition activities and home and community services. Additional lessons learned regarding various program components are presented next.

Outreach and Education

Outreach and education are the first steps of the transition process. Because nursing facility residents may need time to process information and make decisions, outreach and education efforts may need to be provided several times using various approaches to be effective. Due to staff turnover, educating nursing home staff and discharge planners as well as state agencies and state legislature staff about transition issues is not a one-time effort. Transition programs need to be prepared to provide education on an ongoing basis.

Undertaking education activities early in the transition process also helps to decrease resistance to transition based on negative preconceptions, and encourages broad involvement in transition planning processes at an early stage. Education of paid and volunteer transition staff as well as families, judges, and guardians about the rights of individuals in nursing facilities and the availability of home and community services also helps to assure the success of outreach activities.

In some instances, transitioned individuals returned to a nursing home. While some returned for medical reasons, others returned because they did not receive authorized services due to workforce shortages, and others because community living was not what they thought it would be. Some did not feel secure without the 24-hour availability of staff; some missed friends and being around other people; and others missed nursing home activities.

To assure that individuals will remain in the community once transitioned, they must have realistic expectations for community living. In particular, they must understand that they will not have the same level of supports and services available in a nursing home. Additionally, while case managers can help to connect individuals with church, social, and recreational groups, individuals will need to take active roles in establishing their own networks for social interactions and activities.

Case Management

Adequately funded dedicated case management is essential for successful transitions. The number of hours needed for a successful transition varies considerably depending on the extent of an individual‘s needs and the availability of housing and informal supports. Transition programs must be available to offer guidance and support for at least 6 months after the transition to assure that the individual does not permanently return to the nursing home. For example, if recently transitioned individuals are admitted to a hospital and then discharged to a nursing home, intensive case management may be needed for a short period of time to assure that the stay is as brief as possible and that community housing is not lost.

Successfully addressing housing issues requires a great deal of time and effort just to understand how the housing system works. Using housing specialists in the transition process may be the most effective approach to locating affordable accessible housing. One Grantee noted that it may be easier for independent living providers to form collaborative relationships with local case management providers than to attempt to institute these relationships at the state level through the Medicaid agency. This is particularly true when working on issues that can vary statewide, such as housing and transportation.

Flexible Funding

It is essential to have a source of flexible funds to cover any transition expenses not reimbursable through other sources. Flexible funds are also essential to provide “bridge” funding when coverage of essential services and supports is delayed.

Peer Supports

While it may be difficult initially for CILs to find people who have transitioned who are willing to help others to transition, activities to promote self-advocacy can be effective. A well-matched, trained peer outreach advocate can be an important resource to help individuals transition to the community. Consumers‘ reactions to peers are markedly different than their reaction to professionals because peers are able to share their personal experiences about how they have overcome barriers to independence in ways that professionals cannot.

Having a role model—someone who has already transitioned and is active and doing well in the community—can bring hope to nursing home residents who may be skeptical that they can make the transition. Peers can show them how independence is possible. However, matching those transitioning with a peer of a similar age and lifestyle is not always possible given existing resources, and some individuals prefer to receive advice from professionals or from persons they know.

Data Collection

Comprehensive data are needed to document a transition program‘s cost effectiveness to convince the State to fund transition expenses and waiver slots. If technical assistance to develop methods for data collection and analysis are needed, it should be obtained before the program is implemented. While having data to document the success of relocations is critical, policy makers also respond to personal stories. Programs need to ensure that their data reports have a “face.”

State Policy

Recommendations for State Policy

Grantees made many recommendations for changes in state policy to better support transitions, some requiring regulatory or administrative rule changes and others new legislation. Some of the recommendations were state-specific, but many applied generally to all states.

Medicaid

Most of the Grantees‘ recommendations addressed Medicaid policy, including:

Flexible Funding

Administration

Other recommendations

Nursing Home Diversion

Require a formal process to assure that everyone applying for nursing facility admission is assessed for community living options.

Single Entry Points

Housing

Federal Policy

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6. Conclusions

The LTC system is heavily tilted towards institutional care even though most people with disabilities prefer to live in the community. States, with the help of the federal government, are pursuing a number of strategies, including nursing facility transition programs, to create a more balanced system. This paper reports on the activities and experiences of the FY 2001 Nursing Facility Transition Grants of the Real Choice Systems Change program. Once fully implemented, nursing facility transition programs identify people in nursing homes or intermediate care facilities for the mentally retarded (ICF-MRs) who want to return to community living and help them to do so. These grants either directly established and operated nursing facility transition programs or helped to establish the infrastructure necessary for such programs.

Grantees reported a wide range of enduring system improvements that directly and indirectly helped to create a more balanced delivery system. These activities included:

Despite these accomplishments, Grantees found that many barriers remain to transitioning individuals from institutions to the community.

The information in this report is designed to help states address these barriers so that no one has to live in a nursing home or an ICF-MR simply due to the lack of adequate supports in the community. It is particularly important to assure this infrastructure is in place as the American population ages and the need for long-term care increases. Transitioning nursing home and other institutional residents to the community can reduce the need for new nursing home construction in the future and help create a system more responsive to the desires of people of all ages with disabilities.

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Notes

1 In FY 2005, reported Medicaid spending for nursing home expenditures was $47.2 billion and for intermediate care facilities for people with mental retardation (ICFs/MR) was $12.1 billion. Expenditures for community-based LTC services were $35.2 billion and HCBS waivers accounted for two-thirds of this spending.

2 The Systems Change Grant Program also funded Real Choice grants in FY 2001 and several states with these grants used them to pilot and/or implement transition and diversion initiatives.

3 Grants awarded in FY 2005 are called Systems Transformation Grants. Reports about their activities and accomplishments wil be prepared by a different CMS contractor.

4 Most of the FY 2002 Grantees received no-cost grant extensions and will be completing their activities September 30, 2006. Their final reports are due to CMS on December 31, 2006 and RTI will prepare two final reports for these Grantees in the following months.

RTI will prepare final reports for the FY 2003 Grantees in early 2008 and final reports for the FY 2004 Grantees in early 2009.

5 Report is available at http://www.hcbs.org/files/74/3656/NFT_final_web.pdf

6 In some cases, grant staff—including the project director—no longer worked for the state agency that was awarded the grant. In this instance, RTI staff asked to speak to the person most knowledgeable about the grant.

7 The grant period for most Grantees was 4 years (October 1, 2001 through September 30, 2005).

8 The minimum $30 PNA amount was set by federal law in 1988 and has not increased since then. Persons eligible for SSI receive only $30 a month from the Social Security Administration. Bruen, B., Wiener, J. M., and Thomas, S. (November 2003). Medicaid Eligibility Policy for Aged, Blind, and Disabled Beneficiaries. Washington, DC: AARP Public Policy Institute.

9 Anderson, W. L., Wiener, J. M., and O‘Keeffe, J. (June 2006). Money Follows the Person Initiatives of the Systems Change Grantees: Final Report. Research Triangle Park, NC: RTI International. Prepared for the Centers for Medicare & Medicaid Services.

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Part II.

Final Report Summaries

ALABAMA

Nursing Facility Transitions—Independent Living Partnership Grant

Primary Purpose and Major Goals

The grant's primary purpose was to assist nursing home residents in five counties who want to live in the community to obtain transition services and ongoing long-term services and supports. The grant had three major goals: (1) to increase awareness about transition and home and community services among nursing home residents and their families; (2) to assist nursing home residents who want to transition to the community to do so; and (3) to recruit, hire, and train qualified personnel who are committed to the philosophy of independent living and person-centered planning to assist nursing home residents in transitioning to the community.

The grant was implemented by the Mid-Alabama Chapter of the Alabama Coalition of Citizens with Disabilities, also known as the Birmingham Independent Living Center.

Role of Key Partners

Major Accomplishments and Outcomes

Enduring Systems Change

Key Challenges

Continuing Transition Barriers

All of the key challenges cited above remain with the following continuing barriers.

General

State

Federal

Lessons Learned and Recommendations

Key Products

Outreach Materials

Grant staff produced a transition guide for nursing home residents and staff.

Educational and Training Materials

Grant staff developed a manual, Partnerships to Independence: An Advocate's Guide to Nursing Home Transition, which is available on CD-ROM and in hard copy. The project's ILCs are distributing the guide to advocates, service providers, state agency personnel and elected officials, and to additional ILCs in both Alabama and other states.

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ALASKA

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to address deficiencies in housing, direct service providers, transportation, and resource information in order to enable successful transitions from nursing facilities to the community. The grant had two major goals: (1) to provide services to transition people from nursing facilities to the community, and (2) to develop an enduring system to transition and divert people from nursing facilities to the community to the extent they desire.

The grant was awarded to the Division of Senior Services and was managed by the State Independent Living Council for 6 months. When the Division of Senior Services and the Division of Developmental Disabilities merged, grant management reverted to the new Division of Senior and Disabilities Services.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

The major continuing challenge is the lack of affordable and accessible housing, particularly in the villages and, to a large extent, in the regional and urban centers. The original New Freedom Initiative directed HUD to provide housing vouchers, but Alaska has not had an increase in vouchers in four years.

Lessons Learned and Recommendations

Before implementing a transition program, it is very important to involve and obtain buy-in from all stakeholders. In particular, you need to develop strong relationships with nursing facility staff and state agency staff and management.

Key Products

Outreach and Educational Materials

Grant staff designed a brochure called Going Home that explained the NFT program in detail and provided information about nursing facility residents' rights, program eligibility, the transition process, and contact information. The brochure was distributed to nursing home residents and staff, care coordinators, and ILCs.

Technical Materials

Reports

Grant staff prepared three internal reports: Summary of Transition Trends of Medicaid Recipients in Alaskan Nursing Facilities April 2001 through March 2004; Summary of Best Practice Standards for Select Nursing Home-to-Community Transitions Models; and Final Report for Alaska's Nursing Facilities Transition Program: A Centers for Medicare and Medicaid Services Grant Funded Initiative, prepared for the Division of Senior and Disabilities Services by The Center for Human Development, University of Alaska Anchorage. The final report includes cost data that demonstrates significant savings to the state Medicaid system and consumer satisfaction survey results.

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COLORADO

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to create infrastructure at the state and local level to transition consumers from nursing facilities into the community. The grant had three major goals: (1) to build capacity across the State to conduct outreach and to support the transition of individuals residing in nursing facilities to a community-integrated living arrangement, (2) to assure that information about the transition process and community living is available in appropriate formats for individuals with varying cognitive abilities, and (3) to assure that individuals desiring transition have the supports necessary to sustain long-term residence and participation in the community.

The grant was awarded to the Department of Health Care Policy and Financing, who partnered with Colorado's 10 Independent Living Centers (ILCs) to achieve these goals. The State hired one of the ILCs—the Center for People with Disabilities—to serve as the primary contractor to administer grant funds awarded to the other nine ILCs for transition coordination services (called navigator services).

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Change

The grant directly resulted in the coverage of transition services under the Elderly, Blind, and Disabled waiver program. This is a major systems change that will ensure the continuation of transition activities after the grant ends.

Key Challenges

Continuing Transition Barriers

Establishing billing procedures and obtaining federal financial participation for the new waiver transition services was very complicated and time consuming, particularly given the small amount of money involved. The maximum reimbursement for transition services under the waiver is $2,000, which includes $800 for transition navigator services and $1,200 for one-time expenses such as security and utility deposits. Although only $100 of this amount is allowed for the initial purchase of basic food items such as milk, the State had to spend a lot of time working with CMS regional and central offices to provide assurances that this amount would not be misused to purchase nonessential food items.

Lessons Learned and Recommendations

Some ILCs and nursing facilities found it extremely difficult to work together. To facilitate more cooperative and effective working relationships, the state Medicaid agency may need to be involved in the early stages of transition initiatives. For example, agency staff could meet with state nursing home associations and ILCs to discuss and establish in advance how stakeholders will communicate and work together on transition activities. It is very important that all stakeholders be "on board" from the outset and that advocates and providers find common ground regarding goals and parameters for working together. Such efforts may be time consuming, but the good will and improved communication such efforts can generate will ultimately contribute to successful transitions.

Key Products

Technical Materials

AHandbook for Transition Navigators provides step-by-step information about the transition process, from identifying and contacting nursing home residents to handling the moving day and managing the post-transition period. The handbook also provides a copy of the intake form (including language on informed consent), a transition checklist, a consumer satisfaction survey, and other resource materials to facilitate the transition process. All of the hard copies were distributed, but ILCs can update the handbook and these versions will become available in due course.

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CONNECTICUT

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The project's goals were (1) to develop an effective and sustainable community-based transition system for nursing facility residents who want to live in the community and can be appropriately served in this setting, and (2) to establish a strong partnership with the State's Centers for Independent Living.

The grant was awarded to the Department of Social Services, which contracted with the Connecticut Association of Centers for Independent Living to administer and manage it.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Outreach Material

Grant staff developed several outreach materials to inform nursing home residents about transitioning to independent living. The materials included a toll-free number to call for additional information, a list of resources for people in nursing facilities, and a description of an individual who successfully transitioned.

Education and Technical Materials

Grant staff developed The Transition Guide, a booklet for individuals who want to leave a nursing facility and move to the community. The guide contains a self-assessment for community living, resource materials for planning a transition, and information about available transition and home and community services. Grant staff also developed the Guide to Housing Resources in Connecticut, a handbook on how to find and obtain affordable housing in Connecticut.

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GEORGIA

Nursing Facility Transitions—Independent Living Partnership Grant

Primary Purpose and Major Goals

The grant's primary purpose was to assist people in institutions who were interested in transitioning to resettle in the community by increasing outreach and expanding available supports. The grant had three major goals: (1) to develop a transition infrastructure within the Independent Living Network to introduce people with disabilities to peer supporters and role models; expose interested persons to home and community services; offer information, training, and skill development; develop community connections or circles of support; and develop comprehensive transition plans to assist those who choose to resettle in the community; (2) to develop partnerships with nursing homes to identify residents who want to live in the community, to work with discharge planners and consumers to prevent unnecessary nursing facility placement, and to work with housing authorities to increase the availability of housing for people being transitioned or diverted; and (3) to work with the state Medicaid Agency to address consumer-identified problems with waiver programs.

The grant was awarded to disABILITY LINK, a Georgia Center for Independent Living.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

CILs now view transition as one of their core services. They are using the Nursing Facility Transition Manual developed under the grant in their continuing transition activities.

Key Challenges

The State's lack of commitment to help nursing home residents transition was and continues to be the greatest transition barrier. There are insufficient waiver slots due to limited state funding and the waiver program does not cover transition services. Lack of accessible and affordable housing was also a major challenge.

Continuing Transition Barriers

Lessons Learned and Recommendations

It is important to establish collegial relations with nursing facilities and to assure that they have opportunities to provide input on transition initiatives.

Key Products

Educational and Technical Materials

Grant staff developed a Nursing Facility Transition Manual, which provides information for consumers and case managers about essential transition steps. The manual was completed in CD-ROM format and is ready for dissemination to interested parties. There is some interest from other states who are implementing transition initiatives in receiving a copy of the CD.

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GEORGIA

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to build the State's capacity to provide outreach and sustained support for transitioning nursing facility residents to the community living arrangements of their choices. The grant had four major goals: (1) to establish a Georgia Consumer/Provider Task Force to facilitate policy changes addressing system improvement; (2) to facilitate up to 24 individuals' transition to appropriate community-integrated living arrangements; (3) to encourage collaborative relationships among the staff of nursing homes, Centers for Independent Living, and case management agencies to facilitate community placement for residents of nursing homes who want to transition; and (4) to increase the number of trained and reliable quality community service workers.

The Department of Community Health, Division of Medical Assistance, Aging and Community Services implemented the grant in close partnership with disABILITY LINK, a Georgia Center for Independent Living.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

The lack of affordable and accessible housing is an ongoing barrier to timely transitions.

Lessons Learned and Recommendations

Key Products

Outreach, Educational, and Technical Materials

Grant staff developed a Nursing Facility Transition Manual in CD-ROM format, which has been distributed to interested parties. The target audience was consumers, nursing home staff, and case managers. The manual provides information for consumers and case managers about what needs to be done in order to transition.

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INDIANA

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to create system and policy changes that will enable individuals who need long-term care services to reside in the housing environment of their choice. The grant had three major goals: (1) to establish at least three local coalitions to develop models for transitioning and diverting eligible persons from institutions to community settings, (2) to transition at least 100 individuals from nursing homes, and (3) to divert at least 60 individuals from nursing homes.

The grant was awarded to the Family and Social Services Administration, Division of Disability, Aging and Rehabilitative Services.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition and Diversion Barriers

Lessons Learned and Recommendations

Key Products

Outreach Materials

Grant staff and the four AAAs designed, implemented, and evaluated outreach, promotional, educational, and communication materials. The materials were provided to residents, institutional facilities, social service professionals, and the community-at-large. They were also shared with local AAAs and ILCs.

Educational and Technical Materials

The manual—Back to the Community: A Best Practice Guide for Nursing Facility Transition— was developed to assist AAA care managers and administrators in developing programs to transition consumers from nursing facilities. The manual includes a review of the 110 clients transitioned under the grant.

Reports

The State commissioned a report funded by the grant titled "Impact of SEA 493 Provisions on Indiana's Aged and Disabled Waiver", which examined the impact of specific provisions in the 2002 legislation on the Aged and Disabled waiver, such as increasing the financial eligibility income standard from 100 to 300 percent of SSI. The report also examined whether transitioning a specific number of individuals out of nursing homes would offset the additional costs of raising the income standard for waiver eligibility. The report included policy recommendations for addressing bureaucratic transition barriers.

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MARYLAND

Nursing Facility Transitions—Independent Living Partnership Grant

Primary Purpose and Major Goals

The grant's primary purpose was to establish a model program in Maryland, using the statewide network of Centers for Independent Living as peer mentors to facilitate the successful transition of individuals from nursing homes to the community. The grant had four major goals: (1) to identify nursing home residents who wanted to better understand their service options and possibly relocate to the community; (2) to educate and assist those individuals and their families to understand, identify, and obtain community resources; (3) to compile and distribute resource materials from the local community; and (4) to empower individuals with disabilities to advocate for themselves.

The grant was awarded to Making Choices for Independent Living, Inc., Maryland's oldest and largest Center for Independent Living (CIL), who worked in partnership with the State's network of CILs to accomplish these goals.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Outreach Materials

Grant staff produced one major product, the Moving Home Manual, which serves as a statewide transition reference book, and is available in alternative formats and languages and on the Grantee's Web site: http://www.mcil-md.org/Moving_Home_Manual.htm.

The manual provides information about centers for independent living and a list of all the CILs in Maryland with contact details. It also contains many success stories with advice from people who have achieved independent living in the community, and over 100 pages of information about resources and other relevant topics.

Following the original print run of 600 booklets, grant personnel incorporated feedback from individuals who had successfully transitioned and revised the manual before printing 2,500 copies of the second edition. Each CIL is treating the manual as a living document, which can be modified and adapted as needed so that accurate and current information can be disseminated, and each has compiled its own success stories that they use in their ongoing activities.

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MARYLAND

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to establish a sustainable and replicable model program to transition people from nursing facilities to home and community settings. The grant was designed to address two major problems: (1) the lack of accessible, affordable, and safe housing for persons desiring to move from nursing facilities to the community; and (2) the need for assistance with transition-related activities and costs, including security deposits, utility hookups, furnishings, environmental modifications, and procuring community-based support services. The grant had four main goals: (1) to transition a minimum of 150 individuals, allowing for choice and self-direction; (2) to better coordinate community housing with support services; (3) to improve the quality of transition services; and (4) to expand community housing.

The grant was awarded to the Department of Human Resources, who worked with the Department of Disabilities (formerly the Governor's Office for Individuals with Disabilities), the Department of Housing and Community Development, the Department of Health and Mental Hygiene, public housing authorities, and the State's six Centers for Independent Living (CILs).

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Collaboration between housing and services programs and professionals promotes efficient and effective transition services. States may need to enact legislation to remove transition barriers; for example, covering transition services in waiver programs and enacting a Money Follows the Person policy, while HUD should set aside rental assistance vouchers for individuals transitioning from nursing facilities.

Key Products

Outreach and Educational Materials

Using Connecticut's transition guide as a template and incorporating elements of Maryland's NFT-ILP Grant's Moving Home guide, grant staff prepared a draft transition guide called Supporting Home Choices, which lists local and state resources and contact information. The guide's purpose is to assist people with disabilities to remain at home or to transition from a hospital or nursing home back to a home or other community residence. It provides basic information on how to identify needs, seek services, and plan transitions back to the home and community. The Maryland Department of Disabilities is interested in working with consumers, advocates, and state departments to assure a comprehensive review of the guide prior to finalizing it. Once finalized, the guide will be posted on their website and strategies for distribution will be explored.

Staff also developed a fact sheet and registration form for persons interested in transitioning. The fact sheet provides information about the NFT project, including CIL contact numbers. The registration form records information about the individual's personal situation, vocational, educational and day activity preferences, housing preferences, accessibility requirements, housing assistance needed (e.g., deposits, furniture, assistive technology, accessibility modifications), and other needs. The form also includes a signed consent from the nursing home resident giving permission to the transition specialist to assist in their discharge planning process and the transition from the nursing facility to the community.

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MASSACHUSETTS

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to improve community capacity for long-term care and partner with housing providers and agencies to enable eligible individuals in nursing facilities to transition to and live safely in the community. The grant, which conducted activities in the Worcester area, had four major goals: (1) to increase access to and the availability of community services and supports for individuals who want to transition; (2) to increase access to and the availability of affordable, accessible, and safe housing for individuals who are transitioning; (3) to help nursing home residents and their families become more knowledgeable about community services and supports, as well as their options for community involvement by (a) addressing concerns nursing home residents may have about transitioning, and (b) motivating consumers and stakeholders to participate in transition efforts; and (4) to implement monitoring and evaluation mechanisms to measure the effectiveness and sustainability of transition strategies.

The grant was awarded to the Department of Mental Retardation, which is part of the Executive Office of Health and Human Services.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Change

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

General

State

Key Products

Outreach Materials

Fact sheets, PowerPoint presentations, and brochures, including an illustrated "Road Map to the Community" were distributed to consumers and their families as well as to multiple private and public entities with an interest or stake in transition activities.

Educational and Training Materials

Consumers, staff, and partners developed (1) a manual and PowerPoint presentation titled How to Conduct A Housing Search in Worcester, summarizing the steps to finding rental housing in Worcester; (2) a Transition Guidebook that gives practical guidance about living in the community; and (3) several planning tools such as sample budget materials and checklists for persons planning to transition.

Technical Materials

Grant staff and partners developed an array of data management tools, including a database to track transitions; "clinical profiles" to describe those transitioning and general cost trends; and templates for tracking the amount and allocation of case management time and relocation funding assistance.

Reports

Consumer Satisfaction and Quality of Life Report. As part of its evaluation, the Nursing Facility Transitions Project contracted with the Shriver Center at the University of Massachusetts to provide an independent assessment of consumer outcomes, including satisfaction and quality of life. Information in this report was gathered through structured interviews of a sample of consumers, family members, and staff from nursing facilities and community agencies. Interviews occurred 3 to 28 months after consumers moved.

A Look at Housing Resources in the Worcester, MA Area. Prepared by the Clark University International Development, Community & Environment Department, the report identifies housing resources and barriers to obtaining housing within greater Worcester. Interviews were conducted with 17 agencies and with nursing home residents moving to community settings.

Massachusetts Bridges to Community Nursing Facility Transition Project: Summary of Project Outcomes and Findings. March 2006. This summary report describes findings of project studies of costs and benefits of transition activities, consumer outcomes and satisfaction, discharge planning, and housing. The report describes obstacles and recommendations. The report includes as appendices the following internal reports:

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MICHIGAN

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to enhance existing housing and waiver programs to better support nursing facility transitions. The grant had four primary goals: (1) to enhance Michigan's capacity to reach out to nursing home residents who want to live in the community and support their transition; (2) to establish a model to divert individuals from potentially permanent nursing facility placement; (3) to provide education and training on specific aspects of the transition process to community organizations, health care professionals, and project partners; and (4) to provide an evaluation of the program and a study of the comparative cost-effectiveness of community living versus institutional living.

The Division of Community Living within the Department of Community Health implemented the grant in close partnership with the University of Michigan Turner Geriatric Clinic.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

General

To convince the State to fund transition expenses and waiver slots, you need data that demonstrate cost savings.

State

Federal

HUD needs to provide additional Section 8 vouchers.

Key Products

Outreach, Educational and Technical Materials

Grant staff developed a Web site, brochures, and a toll-free number to provide information about nursing facility transition. Grant staff also developed (1) an education program containing vignettes of program participants for CILs and MI Choice waiver agents; (2) a DVD and brochure titled A Better Choice to raise awareness about the realities of transition among care managers, consumers, and their families; and (3) a user guide on the use of the Michigan Client Information System for NFT participant service planning and reporting.

Reports

Grant staff developed a report on the diversion component of the grant titled Nursing Facility Diversion: Mobilizing Residents, Families and Resources to Facilitate Return to Community Living.

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NEW HAMPSHIRE

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to ensure stable community residence for older adults with complex, multiple problems who are currently residing in nursing homes or receiving a nursing home level of care in the state psychiatric facility. The grant had four major goals: (1) to identify potential transition participants in one region and determine their needs for housing and services; (2) to develop "Wrap Around Services" teams for transitioning older adults with mental illness from institutional settings to community settings; (3) to secure funding to expand services and ensure the continuation of the project; and (4) to improve the overall state infrastructure to support people with disabilities in their homes, and provide the necessary support to persons with mental illness moving from institutions to the community.

The New Hampshire Nursing Facility Transition Grant is the only such CMS grant focusing exclusively on transitioning individuals with mental illness.

The grant was awarded to the Department of Health and Human Services, Bureau of Behavioral Health and was implemented by the Bureau's Older Adults Mental Health Administration.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

General Project Challenges

Personal Challenges

Systems Barriers

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Outreach and Technical Materials

Grant staff developed a brochure called Home Choice to inform nursing home residents in the pilot area of Concord about the grant transition project. Grant staff also developed screening and eligibility materials for use during initial contact meetings, and the evaluation team developed a participant database tracking sheet and consumer satisfaction survey for those who had relocated to the community with the assistance of the grant.

Reports

The New Hampshire-Dartmouth Psychiatric Research Center, with input from the project staff, prepared a report titled New Hampshire's Nursing Home Transition Project Evaluation Report that summarized the findings of the grant project.

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TEXAS

Nursing Facility Transitions—Independent Living Partnership Grant

Primary Purpose and Major Goals

The grant had four major goals: (1) to expand outreach efforts to identify potential candidates to transition from nursing facilities into the community; (2) to train state agency staff, consumers, volunteers, advocates, and service providers on how to address transition barriers; (3) to build lasting partnerships between Centers for Independent Living (CILs) and the State's long-term care agency staff to support CILs' efforts to provide transition services; and (4) to identify and recommend changes in state long-term care policy to support transitions.

The Austin Resource Center for Independent Living, Inc. administered the grant on behalf of the Texas Independent Living Partnership, a cooperative effort of the Texas Association of Centers for Independent Living, the Health and Human Services Commission, and the Department of Human Services.

Role of Key Participating Partners

The Texas Independent Living Partnership and its Consumer Task Force assisted with grant planning and implementation.

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Grant staff identified potential challenges in advance and developed the grant's work plan to address and resolve them so they would not impede progress. For example, anticipating that it might be difficult to garner broad support for policy recommendations, they worked with the CILs and other stakeholders to develop policy recommendations that addressed specific issues of concern to them, such as how to obtain an exception to individual cost caps in waiver programs. They also developed recommendations that were consistent with CILs' and stakeholders' values and built on and refined already-formulated policy goals.

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Educational Materials

Grant staff developed the Housing Search Guide: Relocation from Nursing Facilities to the Community, 2003 to assist professionals who have a role in "relocation" of people with disabilities from nursing facilities to community living arrangements with appropriate services and supports. The purpose of the Housing Search Guide is two-fold: to provide practical information to assist in the location of appropriate housing, and also to convey a philosophical basis for systems advocacy in housing.

Technical Materials

Individuals seeking to transition may undergo assessments by multiple service providers and have several service plans. Grant staff produced an Inventory of Community Service and Support Needs for Transition from Nursing Facilities to Community that was designed to consolidate this information. It includes eight assessment areas and is a working document that needs to be updated regularly.

Reports

Grant staff produced a report, Rebalancing the Texas Long Term Care System: A Blueprint for Systems Change, which summarizes the policy recommendations of the Texas Independent Living Partnership over the 3-year grant period and contains detailed long-term recommendations for systems change. The report is a resource to Texas state agencies, CILs, and other interested parties for ongoing systems advocacy and program development.

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WASHINGTON

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to make living in community settings a realistic and viable option for a wide range of persons in the long-term care system. The grant had three major goals: (1) to strengthen the capacity of independent living service providers to furnish technical assistance and support regarding independent living, consumer direction, and nursing facility transition; (2) to expand access to accessible, affordable housing for individuals who are transitioning; and (3) to improve the provision of assistive technology services needed for community living.

The grant was awarded to the Department of Social and Health Services, Aging and Disabilities Services Administration, who contracted with Centers for Independent Living and other independent living providers to work with state grant staff on grant activities.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Outreach Materials

CIL staff and LTC ombudsmen use The Right to Choose flier when meeting with nursing facility residents. It provides information and instructions with contact numbers for anyone wishing to move from a nursing facility.

Educational Materials

Brochure for Personal Assistant Recruitment and Retention—a primer for individuals on consumer direction.

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WEST VIRGINIA

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

The grant's primary purpose was to enable eligible individuals residing in nursing facilities or other segregated environments, or who are at risk of segregated placements, to transition to or remain in the community, and to participate in its social and economic life to the extent desired. The grant had four major goals: (1) to increase the availability of information about community resources, supports and services for persons with disabilities or long-term care needs to enable them to make informed choices for community living; (2) to identify persons who wish to transition from nursing facilities into the community and identify necessary services and supports; (3) to identify operational and system barriers to community living and recommend changes to address them; and (4) to implement transition support models and evaluate their cost-effectiveness as well as consumer satisfaction with them.

The grant was awarded to the Department of Health and Human Resources, Bureau for Medical Services (Medicaid) and was managed by the West Virginia University's Center for Excellence in Developmental Disabilities Education, Research and Service.

Role of Key Partners

The grant program, called Transitioning to Inclusive Communities, partnered with all potential stakeholders, including consumers and consumer advocacy groups, state agencies, the Long-Term Care (LTC) Ombudsman, the Behavioral Health Ombudsman, the Olmstead Coordinator, the nursing home industry, home and community service providers, and organizations providing legal assistance to persons with disabilities.

Major Accomplishments and Outcomes

Enduring Systems Change

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Outreach Materials

Grant staff produced a brochure about the grant's activities, and over 1,000 were distributed along with other transition information materials, such as fact sheets about the A/D and MR/DD waiver programs, and flyers about training materials on person-centered planning, transition options, and readiness assessment for nursing home staff. All printed materials are available in Braille, electronic format, cassette tape, and large print. The materials were distributed to consumers, providers, nursing home and hospital staff, service providers, and other stakeholders.

Educational and Training Materials

Staff developed a Navigator's Guide to Community Inclusion, which provides information about assessment, legal resources, and a readiness assessment tool for individuals in institutional settings, including psychiatric facilities. The guide is being used by the Olmstead Director, CILs, the LTC Ombudsman, and nursing home social workers.

Staff also developed a person-centered transition planning curriculum, a person-centered checklist manual for consumers and navigators, and other PowerPoint presentations and materials on person-centered planning and the transition process. These materials were used in education and training activities.

Reports

Grant staff submitted a preliminary report on Targeted Case Management (TCM) to the Bureau for Medical Services (Medicaid), the ADA Director, the Olmstead Director and other interested parties. The report described the Medicaid TCM option as a means to assist with transition/diversion from nursing facilities and recommended that TCM be available for up to 180 days for anyone transitioning.

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WISCONSIN

Nursing Facility Transitions—Independent Living Partnership Grant

Primary Purpose and Major Goals

The grant's primary purpose was to create effective methods to reduce and eliminate barriers that limit or prevent persons with disabilities or long-term illness from living in the community. The grant had four major goals: (1) to establish a consistent outreach process to identify people who want to move from a nursing facility to the community; (2) to enhance the existing independent living center peer support program that provides transition assistance for consumers, families, and guardians; (3) to develop methods to increase housing options for people who are transitioning; and (4) to facilitate successful transitions from nursing facilities to community placements for up to 210 persons during the grant period.

Independent Living Resources, Inc., one of Wisconsin's eight Independent Living Centers (ILCs), administered the grant, which was a statewide collaborative effort of all the ILCs working with the Department of Health and Family Services and other local and state resources.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Outreach Materials

Independent Living Resources produced a two-page Nursing Facility Transition flyer that provides basic information about consumers' right to be supported in the community as well as a clear description of the NFT-ILP Grant project, including contact information for obtaining assistance.

Educational Materials

Grant staff produced a residents' rights brochure, which was used for consumer education, and materials about the rights of individuals in nursing facilities were used in training ILC staff, peer supporters, families, and others. The materials included information about the Americans with Disabilities Act and the Olmstead decision, as well as relevant Medicaid regulations.

Technical Materials

Grant staff developed a Needs Assessment Survey and a Furnishings Checklist to assist transition planning.

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WISCONSIN

Nursing Facility Transitions—State Program Grant

Primary Purpose and Major Goals

Wisconsin's nursing facility transitions project, titled Homecoming II, is built on the experience of a previous Nursing Facility Transitions grant received in 1999. The original Homecoming project focused on individuals with physical disabilities and frail elderly persons living in nursing homes, and developed relationships with Independent Living Centers as partners in outreach and relocation support.

The grant's primary purpose was to develop statewide systematic processes for the ongoing identification and relocation of institutionalized individuals who want to live in a less-restrictive setting, giving special emphasis to those who have developmental disabilities or serious mental illness. The grant had two major goals: (1) to facilitate the transition of approximately 400 individuals from nursing facilities to a successful community placement during the project period, and (2) to increase the flexibility and responsiveness of the current system so that available resources can be redirected to enable persons with long-term care needs to be served in the least restrictive setting appropriate to their needs.

The grant was awarded to the Department of Health and Family Services (hereafter the Department) and implemented by its Division of Supportive Living (now called the Division of Disability and Elder Services) in collaboration with Wisconsin's Nursing Facility Transitions–Independent Living Partnership (NFT-ILP) Grant that was awarded to Independent Living Resources, Inc., one of Wisconsin's eight Independent Living Centers.

Role of Key Participating Partners

Major Accomplishments and Outcomes

Enduring Systems Changes

Key Challenges

Continuing Transition Barriers

Lessons Learned and Recommendations

Key Products

Reports

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