January 2007

Alzheimer's Disease Demonstration Grants to States Program: New York

Final Report

Prepared for

Lori Stalbaum, M.S.W.

Administration on Aging

1 Massachusetts Avenue, NW

Washington, DC 20001

Prepared by

Deborah S. Osber, M.P.H.

Kristin Siebenaler, M.P.A.

Joshua M. Wiener, Ph.D.

RTI International

Health, Social, and Economics Research

1440 Main Street, Suite 310

Waltham, MA 02451

RTI Project Number 09351.002.008

**ALZHEIMER'S DISEASE DEMONSTRATION GRANTS TO STATES:**

**New York**

Deborah S. Osber, M.P.H.

Kristin Siebenaler, M.P.A.

Joshua M. Wiener, Ph.D.

Administration on Aging Project Officer: Lori Stalbaum, M.S.W.

RTI International[^1]

Contract No. GS-10F-009L MOBIS

Delivery Order No. HHSP233200400143U

January 2007

This project was funded by the Administration on Aging under contract
number GS-10F-009L MOBIS, delivery order number HHSP233200400143U. This
report is a product of the Alzheimer's Disease Demonstration Grants to
States National Resource Center. The statements contained in this report
are solely those of the authors and do not necessarily reflect the views
or policies of the U.S. Administration on Aging or RTI International.
RTI assumes responsibility for the accuracy and completeness of the
information contained in this report. The authors would like to thank
the ADDGS grant staff, other state officials, providers, consumers,
researchers, educators, and others who gave so generously of their time
to provide information about grant activities.

CONTENTS

Section Page

EXECUTIVE SUMMARY [1](#executive-summary)

SECTION 1 INTRODUCTION [5](#section-1-introduction)

SECTION 2 COORDINATED CARE GRANT (JULY 1, 2002--JUNE 30, 2005)
[10](#section-2-coordinated-care-grant-july-1-2002june-30-2005)

Background [11](#background)

Grant Partners [13](#grant-partners)

Bureau of Chronic Disease Services within the New York Department of
Health
[13](#bureau-of-chronic-disease-services-within-the-new-york-department-of-health)

Office for Mental Retardation and Developmental Disabilities
[13](#office-for-mental-retardation-and-developmental-disabilities)

The Albany County Office for the Aging and Monroe County Department of
Health and Human Services, the Area Agencies on Aging in Albany and
Monroe Counties, Respectively
[14](#the-albany-county-office-for-the-aging-and-monroe-county-department-of-health-and-human-services-the-area-agencies-on-aging-in-albany-and-monroe-counties-respectively)

Northeastern NY Alzheimer's Association Chapter (covering Albany County)
and the Rochester Alzheimer's Association Chapter (covering Monroe
County)
[14](#northeastern-ny-alzheimers-association-chapter-covering-albany-county-and-the-rochester-alzheimers-association-chapter-covering-monroe-county)

Developmental Disabilities Service Provider Network
[15](#developmental-disabilities-service-provider-network)

The State University at Albany's Center for Excellence in Aging Services
[15](#the-state-university-at-albanys-center-for-excellence-in-aging-services)

Grant Strategies and Activities to Provide Services
[15](#grant-strategies-and-activities-to-provide-services)

Enhancing Access to Dementia-Appropriate Services
[15](#enhancing-access-to-dementia-appropriate-services)

Grant Partner Role and Activities
[15](#grant-partner-role-and-activities)

Partners' Perceptions of the Impact of the ADDGS Grant
[16](#partners-perceptions-of-the-impact-of-the-addgs-grant)

Enhancing the Availability and Quality of Services
[17](#enhancing-the-availability-and-quality-of-services)

Separate Dementia Programming [18](#separate-dementia-programming)

Environmental Modifications [18](#environmental-modifications)

Enhancing the Quality and Availability of a Competent Workforce
[19](#enhancing-the-quality-and-availability-of-a-competent-workforce)

Influencing State and Local Policies, Procedures, and Funding for
Services
[22](#influencing-state-and-local-policies-procedures-and-funding-for-services)

Dissemination [22](#dissemination)

Partner Relations [22](#partner-relations)

Policies and Procedures [23](#policies-and-procedures)

Funding [24](#funding)

SECTION 3 POINT-OF-ENTRY GRANT (JULY 1, 2005--JUNE 30, 2008)
[25](#section-3-point-of-entry-grant-july-1-2005june-30-2008)

Background [26](#background-1)

Grant Partners [29](#grant-partners-1)

Bureau of Chronic Disease Services within the New York Department of
Health
[29](#bureau-of-chronic-disease-services-within-the-new-york-department-of-health-1)

The Area Agencies on Aging in Fulton and Oneida County, respectively the
Fulton County Office for the Aging and the Oneida County Office for the
Aging
[29](#the-area-agencies-on-aging-in-fulton-and-oneida-county-respectively-the-fulton-county-office-for-the-aging-and-the-oneida-county-office-for-the-aging)

Northeastern NY Alzheimer's Association Chapter (covering Fulton County)
and the Central New York Chapter (covering Oneida County)
[30](#northeastern-ny-alzheimers-association-chapter-covering-fulton-county-and-the-central-new-york-chapter-covering-oneida-county)

Alzheimer's Disease Assistance Centers
[30](#alzheimers-disease-assistance-centers)

Grant Advisory Committees [30](#grant-advisory-committees)

The State University at Albany's Center for Excellence in Aging Services
[30](#the-state-university-at-albanys-center-for-excellence-in-aging-services-1)

Grant Strategies and Activities to Integrate Services
[31](#grant-strategies-and-activities-to-integrate-services)

Enhancing Access to Dementia-Appropriate Services
[31](#enhancing-access-to-dementia-appropriate-services-1)

Provider Relationships [31](#provider-relationships)

Enhancing the Availability and Quality of Services
[32](#enhancing-the-availability-and-quality-of-services-1)

Enhancing the Quality and Availability of a Competent Workforce
[33](#enhancing-the-quality-and-availability-of-a-competent-workforce-1)

Influencing State and Local Policies, Procedures, and Funding for
Services
[33](#influencing-state-and-local-policies-procedures-and-funding-for-services-1)

Policies and Procedures [34](#policies-and-procedures-1)

Funding [34](#funding-1)

SECTION 4 CONCLUSION [35](#section-4-conclusion)

Coordinated Care Grant [35](#coordinated-care-grant)

Point-of-Entry Grant [36](#point-of-entry-grant)

REFERENCES [39](#references)

[List of Exhibits]{.underline}

Exhibit ES-1. Coordinated Care Grant Key Findings and Point-of-Entry
Grant Intended\
Outcomes [2](#__RefHeading___Toc157920270)

Exhibit 1. Coordinated Care Grant Key Findings and Point-of-Entry Grant
Intended Outcomes [7](#__RefHeading___Toc157920271)

Exhibit 2. Key Objectives of New York's ADDGS Coordinated Care Grant
[11](#__RefHeading___Toc157920272)

Exhibit 3. Organizational Flow of First ADDGS Grant
[13](#__RefHeading___Toc157920273)

Exhibit 4. ADDGS Coordinated Care Grant: Rochester Alzheimer's
Association Services\
for Participants [18](#__RefHeading___Toc157920274)

Exhibit 5. Components of the Staff Training Tool Kit
[21](#__RefHeading___Toc157920275)

Exhibit 6. Key Objectives of New York's ADDGS Point of Entry Grant
[26](#__RefHeading___Toc157920276)

Exhibit 7. Point of Entry Flow Chart [28](#__RefHeading___Toc157920277)

Exhibit 8. Key Partners of the Point of Entry Grant
[29](#__RefHeading___Toc157920278)

# EXECUTIVE SUMMARY

In July 2002, the New York State Office on Aging (NYSOFA) implemented
its first 3-year Alzheimer's Disease Demonstration Grants to States
(ADDGS) grant designed to increase the ability of persons with
developmental disabilities and symptoms of Alzheimer's disease to age in
place in spite of their disease progression. NYSOFA selected this
dual-diagnosis population because of the growing body of research
indicating that individuals with developmental disabilities,
particularly those with Down Syndrome, have a much larger risk of
suffering from Alzheimer's disease (Janicki and Dalton, 1999).
Furthermore, because of advances in medical care, the longevity of this
population has increased and a growing number of New York State
residents will require services from both the aging and developmental
disabilities networks.

The two primary goals of this grant included: (1) creating a model for
providing home and community-based services to persons with both
developmental disabilities and symptoms of Alzheimer's disease and their
caregivers; and (2) demonstrating the effectiveness of an approach that
blended Alzheimer's disease, aging, and developmental disabilities
support and management strategies, and increased collaboration and
cross-agency responses to the home and community-based service needs of
this population (McCallion and McCarron, 2002).

In July 2005, NYSOFA began implementing the second ADDGS grant, which is
designed to create a dementia-capable single point of entry (POE) that
utilizes a county-based long-term care central assessment system and
works with existing state-funded Alzheimer's disease screening and
service delivery system in rural areas and ethnically diverse small
cities (McCallion and Harazin, 2005; New York State Office for the
Aging, 2006). Through the grant, two counties integrated dementia
services, education, and training with the existing county-based
long-term care POE system. Previously, an individual with Alzheimer's
disease or family member requesting supports or services would have
received fragmented care or been referred to the Alzheimer's Association
for Alzheimer's disease-related assistance. Within the newly integrated
system, the Alzheimer's Association staff and Area Agency on Aging case
manager provide information and access to a full range of services
related to long-term care.

Individuals living in rural areas and persons who are ethnically diverse
and living in small cities are of particular concern to NYSOFA officials
because few services and supports are currently available to them.
Additionally, some services available to individuals in large urban
areas are not necessarily available to those individuals residing in
small cities or rural areas (McCallion and Harazin, 2005).

**Exhibit ES-1** summarizes findings for the Coordinated Care grant and
intended outcomes for the Point-of-Entry grant with respect to the four
key study questions for each grant.

[]{#__RefHeading___Toc157920270 .anchor}Exhibit ES-1. Coordinated Care
Grant Key Findings and Point-of-Entry Grant Intended Outcomes

+-----------------------------------------------------------------------+
| **Coordinated Care Grant---Key Findings**                             |
+-----------------------------------------------------------------------+
| How has the grant enhanced access to services for individuals with    |
| developmental disabilities and Alzheimer's disease?                   |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Trained developmental disabilities providers and family members   |
|     to recognize the symptoms of dementia, secure a diagnosis of      |
|     dementia, identify levels of need for dementia-appropriate        |
|     services and supports and environmental modifications, and create |
|     dementia-specific care plans.                                     |
|                                                                       |
| -   Surpassed the stated goal of allowing 150 individuals with        |
|     developmental disabilities and Alzheimer's disease to age in      |
|     place in community residences with direct services, supports, and |
|     environmental modifications.                                      |
+-----------------------------------------------------------------------+
| How has the grant enhanced the availability and quality of services   |
| for individuals with developmental disabilities and Alzheimer's       |
| disease?                                                              |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Created a network of providers offering dementia-appropriate      |
|     direct services (e.g., staff time to help get ready for attending |
|     a day program) and supports (e.g., support groups).               |
|                                                                       |
| -   Changed physical surroundings at day programs and community       |
|     residences that provided a more appropriate space (e.g., simpler  |
|     environment) and augmented the value of the more traditional      |
|     direct services administered through the grant.                   |
+-----------------------------------------------------------------------+
| How has the grant enhanced the quality and availability of a          |
| competent workforce for those with developmental disabilities and     |
| Alzheimer's disease?                                                  |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Provided dementia-specific training and education to more than    |
|     1,000 individuals, including direct care workers, family members, |
|     and social workers.                                               |
|                                                                       |
| -   Enhanced capacity of staff to identify early signs of Alzheimer's |
|     disease in the developmental disabilities population and become   |
|     more skilled at working with this population,                     |
|     increasing referrals by developmental disabilities providers for  |
|     dementia-appropriate long-term care services.                     |
+-----------------------------------------------------------------------+

(continued)

Exhibit ES-1. Coordinated Care Grant Key Findings and Point-of-Entry
Grant Intended Outcomes (continued)

+-----------------------------------------------------------------------+
| **Coordinated Care Grant---Key Findings (continued)**                 |
+-----------------------------------------------------------------------+
| What impacts has the grant had on state and local policies,           |
| procedures, and funding for services for individuals with             |
| developmental disabilities and Alzheimer's disease?                   |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Leveraged additional funding for grant partners from other state  |
|     agencies and foundations to continue dementia services to the     |
|     aging developmental disabilities population.                      |
|                                                                       |
| -   Led to a care planning process for Medicaid day program services  |
|     for people with developmental disabilities and Alzheimer's        |
|     disease that maintain skills and ensure quality of life, rather   |
|     than aim to increase skills.                                      |
+-----------------------------------------------------------------------+
| **Point of Entry Grant---Intended Outcomes**                          |
+-----------------------------------------------------------------------+
| How will the grant enhance access to services for individuals with    |
| Alzheimer's disease, particularly among rural and ethnically diverse  |
| populations?                                                          |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Provide Alzheimer's disease services through the                  |
|     single-point-of-entry system creating an environment where        |
|     individuals no longer have to seek services from multiple         |
|     locations or providers.                                           |
|                                                                       |
| -   Enable individuals with Alzheimer's disease to remain in the      |
|     community longer because of comprehensive needs assessments, the  |
|     development of dementia-specific service plans, and provision of  |
|     caregiver supports.                                               |
+-----------------------------------------------------------------------+
| How will the grant enhance the availability and quality of services   |
| for individuals with Alzheimer's disease, particularly among rural    |
| and ethnically diverse populations?                                   |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Provide dementia-appropriate services and coordinate services     |
|     between providers and clients.                                    |
|                                                                       |
| -   Meet the needs of persons with Alzheimer's disease and their      |
|     family caregivers in rural and small ethnically diverse cities by |
|     hiring a dementia-specific case manager to manage and deliver all |
|     diagnostic and direct care services.                              |
|                                                                       |
| -   Develop a directory for targeted geographic areas listing         |
|     available support resources.                                      |
+-----------------------------------------------------------------------+

(continued)

Exhibit ES-1. Coordinated Care Grant Key Findings and Point-of-Entry
Grant Intended Outcomes (continued)

+-----------------------------------------------------------------------+
| **Point of Entry Grant---Intended Outcomes (continued)**              |
+-----------------------------------------------------------------------+
| How will the grant enhance the quality and availability of a          |
| competent workforce for those with Alzheimer's disease, particularly  |
| among rural and ethnically diverse populations?                       |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Establish a competent workforce for people caring for persons     |
|     with Alzheimer's disease and other dementias by connecting        |
|     families, long-term care service providers, case managers,        |
|     clergy, and medical providers with dementia-specific training;    |
|     providing informational and educational materials, and serve as a |
|     portal to access community resources, information, and other      |
|     long-term care service options.                                   |
|                                                                       |
| -   Support the ongoing education of a dementia-capable workforce by  |
|     producing train-the-trainer modules.                              |
+-----------------------------------------------------------------------+
| What impacts will the grant have on state and local policies,         |
| procedures, and funding for services for individuals with Alzheimer's |
| disease, particularly among rural and ethnically diverse populations? |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Create a dementia services network within the long-term care      |
|     system and a replicable program model based on the collaboration  |
|     among grant partners, specifically between dementia-appropriate   |
|     service providers and POE staff.                                  |
|                                                                       |
| -   Move intensive dementia case management facilitated by the        |
|     integration of point-of-entry staff with Alzheimer's disease      |
|     expertise and knowledge of related services into the long-term    |
|     care point-of-entry case management team, resulting in a more     |
|     comprehensive care plan.                                          |
|                                                                       |
| -   Install a formal mechanism for addressing dementia needs in       |
|     long-term care planning through commitments by POE system leaders |
|     to sustain the position of dementia specialists on case           |
|     management teams.                                                 |
+-----------------------------------------------------------------------+

# SECTION 1 INTRODUCTION

Alzheimer's disease is a devastating degenerative disease that causes
memory loss, challenging behavior problems, and severe functional
limitations. A person with late-stage Alzheimer's disease requires
constant supervision, support, and hands-on care. While many persons
with Alzheimer's disease are admitted to nursing homes, the majority of
people with the disease live in the community, where their families
provide most of the care. To improve services to persons with
Alzheimer's disease, Congress established the Alzheimer's Disease
Demonstration Grants to States (ADDGS) program, which is administered by
the U.S. Administration on Aging. The program focuses on serving
hard-to-reach and underserved people with Alzheimer's disease or related
disorders (U.S. Administration on Aging, no date).

This report describes one of four case studies conducted by the ADDGS
National Resource Center in 2006 on the activities of selected State
programs.[^2] The New York State Office on Aging was selected because of
the State's concerted efforts to: (1) develop an innovative approach to
provide services to persons with developmental disabilities and
Alzheimer's disease and their caregivers; and (2) incorporate persons
with Alzheimer's disease into the population being served by county
long-term care point-of-entry (POE) systems, especially people in rural
and ethnically diverse communities.

The U.S. Administration on Aging has awarded New York two ADDGS grants.
The State's first grant (2002-2005), the Coordinated Care grant,
resulted in a better understanding by developmental disabilities
providers and caregivers of the impact of dementias on the developmental
disabilities population; an increase in the number of referrals to
long-term care providers; and the provision of dementia-appropriate
long-term care services to persons with developmental disabilities and
Alzheimer's disease in the Rochester and Albany (Capital Region) areas.
The second ADDGS grant (2005-2008), the Point-of-Entry grant, is
including persons with Alzheimer's disease in Fulton and Oneida
Counties' long-term care single point-of-entry systems.

The report addresses the following four research questions for each
grant:

*Coordinated Care Grant*

-   How has the grant enhanced access to services for individuals with
    developmental disabilities and Alzheimer's disease?

-   How has the grant enhanced the availability and quality of services
    for individuals with developmental disabilities and Alzheimer's
    disease?

-   How has the grant enhanced the quality and availability of a
    competent workforce for individuals with developmental disabilities
    and Alzheimer's disease?

-   What impacts has the grant had on state and local policies,
    procedures, and funding for services for individuals with
    developmental disabilities and Alzheimer's disease?

*Point-of-Entry Grant*

-   How has the grant enhanced access to services for individuals with
    Alzheimer's disease, particularly among rural and ethnically diverse
    populations?

-   How has the grant enhanced the availability and quality of services
    for individuals with Alzheimer's disease, particularly among rural
    and ethnically diverse populations?

-   How has the grant enhanced the quality and availability of a
    competent workforce for individuals with Alzheimer's disease,
    particularly among rural and ethnically diverse populations?

-   What impacts has the grant had on state and local policies,
    procedures, and funding for services for individuals with
    Alzheimer's disease, particularly among rural and ethnically diverse
    populations?

**Exhibit 1** summarizes findings for the Coordinated Care grant and
intended outcomes for the Point-of-Entry grant with respect to the four
key study questions for each grant.

Information for this case study came from reviews of administrative
files at the U.S. Administration on Aging and various Web sites, an
in-person site visit in Utica and Rochester, New York, from July 25--26,
2006, and several telephone interviews with grant partners. An RTI
International staff member and a consultant met in person with or spoke
by telephone to staff representing the following entities:

-   New York State Office on Aging (State Unit on Aging),

-   Bureau of Chronic Disease Services within the New York Department of
    Health,

-   Finger Lakes Developmental Disability Service Office (DDSO) (a
    regional office of the State Office for Mental Retardation and
    Developmental Disability (OMRDD),

-   Four Area Agencies on Aging,

-   Three New York State chapters of the Alzheimer's Association,

-   State University at Albany's Center for Excellence in Aging
    Services,

-   University of Rochester's Program in Aging & Developmental
    Disability within the Strong Center for Developmental Disabilities,
    and

-   Monroe and Wayne County ARCs.

They also attended an advisory board meeting for the Oneida County
Point-of-Entry grant.

[]{#__RefHeading___Toc157920271 .anchor}Exhibit 1. Coordinated Care
Grant Key Findings and Point-of-Entry Grant Intended Outcomes

+-----------------------------------------------------------------------+
| **Coordinated Care Grant---Key Findings**                             |
+-----------------------------------------------------------------------+
| How has the grant enhanced access to services for individuals with    |
| developmental disabilities and Alzheimer's disease?                   |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Trained developmental disabilities providers and family members   |
|     to recognize the symptoms of dementia, secure a diagnosis of      |
|     dementia, identify levels of need for dementia-appropriate        |
|     services and supports and environmental modifications, and create |
|     dementia-specific care plans.                                     |
|                                                                       |
| -   Surpassed the stated goal of allowing 150 individuals with        |
|     developmental disabilities and Alzheimer's disease to age in      |
|     place in community residences with direct services, supports, and |
|     environmental modifications.                                      |
+-----------------------------------------------------------------------+
| How has the grant enhanced the availability and quality of services   |
| for individuals with developmental disabilities and Alzheimer's       |
| disease?                                                              |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Created a network of providers offering dementia-appropriate      |
|     direct services (e.g., staff time to help get ready for attending |
|     a day program) and supports (e.g., support groups).               |
|                                                                       |
| -   Changed physical surroundings at day programs and community       |
|     residences that provided a more appropriate space (e.g., simpler  |
|     environment) and augmented the value of the more traditional      |
|     direct services administered through the grant.                   |
+-----------------------------------------------------------------------+
| How has the grant enhanced the quality and availability of a          |
| competent workforce for those with developmental disabilities and     |
| Alzheimer's disease?                                                  |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Provided dementia-specific training and education to more than    |
|     1,000 individuals, including direct care workers, family members, |
|     and social workers.                                               |
|                                                                       |
| -   Enhanced capacity of staff to identify early signs of Alzheimer's |
|     disease in the developmental disabilities population and become   |
|     more skilled at working with this population,                     |
|     increasing referrals by developmental disabilities providers for  |
|     dementia-appropriate long-term care services.                     |
+-----------------------------------------------------------------------+

(continued)

Exhibit 1. Coordinated Care Grant Key Findings and Point-of-Entry Grant
Intended Outcomes (continued)

+-----------------------------------------------------------------------+
| **Coordinated Care Grant---Key Findings (continued)**                 |
+-----------------------------------------------------------------------+
| What impacts has the grant had on state and local policies,           |
| procedures, and funding for services for individuals with             |
| developmental disabilities and Alzheimer's disease?                   |
|                                                                       |
| The grant:                                                            |
|                                                                       |
| -   Leveraged additional funding for grant partners from other state  |
|     agencies and foundations to continue dementia services to the     |
|     aging developmental disabilities population.                      |
|                                                                       |
| -   Led to a care planning process for Medicaid day program services  |
|     for people with developmental disabilities and Alzheimer's        |
|     disease that maintain skills and ensure quality of life, rather   |
|     than aim to increase skills.                                      |
+-----------------------------------------------------------------------+
| **Point of Entry Grant---Intended Outcomes**                          |
+-----------------------------------------------------------------------+
| How will the grant enhance access to services for individuals with    |
| Alzheimer's disease, particularly among rural and ethnically diverse  |
| populations?                                                          |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Provide Alzheimer's disease services through the                  |
|     single-point-of-entry system creating an environment where        |
|     individuals no longer have to seek services from multiple         |
|     locations or providers.                                           |
|                                                                       |
| -   Enable individuals with Alzheimer's disease to remain in the      |
|     community longer because of comprehensive needs assessments, the  |
|     development of dementia-specific service plans, and provision of  |
|     caregiver supports.                                               |
+-----------------------------------------------------------------------+
| How will the grant enhance the availability and quality of services   |
| for individuals with Alzheimer's disease, particularly among rural    |
| and ethnically diverse populations?                                   |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Provide dementia-appropriate services and coordinate services     |
|     between providers and clients.                                    |
|                                                                       |
| -   Meet the needs of persons with Alzheimer's disease and their      |
|     family caregivers in rural and small ethnically diverse cities by |
|     hiring a dementia-specific case manager to manage and deliver all |
|     diagnostic and direct care services.                              |
|                                                                       |
| -   Develop a directory for targeted geographic areas listing         |
|     available support resources.                                      |
+-----------------------------------------------------------------------+

(continued)

Exhibit 1. Coordinated Care Grant Key Findings and Point-of-Entry Grant
Intended Outcomes (continued)

+-----------------------------------------------------------------------+
| **Point of Entry Grant---Intended Outcomes (continued)**              |
+-----------------------------------------------------------------------+
| How will the grant enhance the quality and availability of a          |
| competent workforce for those with Alzheimer's disease, particularly  |
| among rural and ethnically diverse populations?                       |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Establish a competent workforce for people caring for persons     |
|     with Alzheimer's disease and other dementias by connecting        |
|     families, long-term care service providers, case managers,        |
|     clergy, and medical providers with dementia-specific training;    |
|     providing informational and educational materials, and serve as a |
|     portal to access community resources, information, and other      |
|     long-term care service options.                                   |
|                                                                       |
| -   Support the ongoing education of a dementia-capable workforce by  |
|     producing train-the-trainer modules.                              |
+-----------------------------------------------------------------------+
| What impacts will the grant have on state and local policies,         |
| procedures, and funding for services for individuals with Alzheimer's |
| disease, particularly among rural and ethnically diverse populations? |
|                                                                       |
| The grant will:                                                       |
|                                                                       |
| -   Create a dementia services network within the long-term care      |
|     system and a replicable program model based on the collaboration  |
|     among grant partners, specifically between dementia-appropriate   |
|     service providers and POE staff.                                  |
|                                                                       |
| -   Move intensive dementia case management facilitated by the        |
|     integration of point-of-entry staff with Alzheimer's disease      |
|     expertise and knowledge of related services into the long-term    |
|     care point-of-entry case management team, resulting in a more     |
|     comprehensive care plan.                                          |
|                                                                       |
| -   Install a formal mechanism for addressing dementia needs in       |
|     long-term care planning through commitments by POE system leaders |
|     to sustain the position of dementia specialists on case           |
|     management teams.                                                 |
+-----------------------------------------------------------------------+

The remaining sections of the report highlight the main features of the
two New York ADDGS projects. Section 2 describes the Coordinated Care
grant which began in July 2002 and ended in June 2005; section 3
describes the Point-of-Entry grant which started in July 2005 and will
end in June 2008. The fourth section includes the conclusion.

# SECTION 2 COORDINATED CARE GRANT (JULY 1, 2002--JUNE 30, 2005)

In July 2002, the New York State Office on Aging (NYSOFA) implemented
its first 3-year Alzheimer's Disease Demonstration Grants to States
(ADDGS) grant, which was designed to increase the ability of persons
with developmental disabilities and symptoms of Alzheimer's disease to
age in place. NYSOFA selected this dually diagnosed population because
of the growing body of research indicating that individuals with
developmental disabilities, particularly those with Down Syndrome, have
a much larger risk of suffering from Alzheimer's disease (Janicki and
Dalton, 1999). Furthermore, because of advances in medical care, the
longevity of this population has increased and a growing number of New
York State residents will require services from both the aging and
developmental disabilities service networks. NYSOFA responded to this
need by creating a consortium of providers in two counties to implement
the grant. Both counties had a large number of providers and a readiness
to collaborate to provide services (McCallion and McCarron, 2002).

The two primary goals of this grant included: (1) creating a model for
providing home and community-based services to persons with both
developmental disabilities and symptoms of Alzheimer's disease and their
caregivers; and (2) demonstrating the effectiveness of an approach that
blended Alzheimer's disease, aging, and developmental disabilities
support and management strategies, and increased collaboration and
cross-agency responses to the home and community-based service needs of
this population (McCallion and McCarron, 2002).

The target population for the grant comprised individuals with
development disabilities who attended social and medical adult day care
facilities and day programs and who resided in community settings (e.g.,
group homes and family-based care \[foster family care\]).[^3] These
individuals constituted a diverse group of persons aging with a range of
developmental disabilities who experienced symptoms of Alzheimer's
disease. Many clients had not been formally diagnosed with Alzheimer's
disease and the majority of people were considered at risk for placement
in more restrictive settings (Harazin and McCallion, 2005).

**Exhibit 2** lists the key objectives of the Coordinated Care grant.

[]{#__RefHeading___Toc157920272 .anchor}Exhibit 2. Key Objectives of New
York's ADDGS Coordinated Care Grant

+-----------------------------------------------------------------------+
| -   Increase access to dementia-appropriate long-term care services   |
|     for persons with developmental disabilities and symptoms of       |
|     Alzheimer's disease by creating the capacity of developmental     |
|     disabilities providers and family members to: recognize the       |
|     symptoms of dementia, secure a diagnosis of dementia, and assess  |
|     the need for dementia-appropriate services and environmental      |
|     modifications, and create plans of care.                          |
|                                                                       |
| -   Enhance the availability and quality of direct services for       |
|     persons with developmental disabilities and Alzheimer's disease   |
|     by creating a network of providers offering dementia-appropriate  |
|     direct services (e.g., staff time to help get ready for attending |
|     a day program) and supports (e.g., support groups) and            |
|     implementing environmental modifications at day programs and      |
|     community residences.                                             |
|                                                                       |
| -   Establish a competent workforce and educated caregiver community  |
|     for persons caring for persons with developmental disabilities    |
|     and Alzheimer's disease.                                          |
|                                                                       |
| -   Increase referrals by developmental disability providers for      |
|     dementia-appropriate long-term care services because staff are    |
|     better able to identify early signs of Alzheimer's disease in the |
|     developmental disabilities population and become more skilled at  |
|     working with this population.                                     |
|                                                                       |
| -   Disseminate the model of services and training, the results of    |
|     the evaluation, and the lessons learned to other regions of the   |
|     state.                                                            |
|                                                                       |
| -   Leverage ADDGS funds to sustain the program after grant funding   |
|     ends.                                                             |
+-----------------------------------------------------------------------+

## Background

Nationally, an estimated 140,000 adults have a diagnosis of
developmental disability (including Down syndrome) and are potentially
affected by Alzheimer's disease (Janicki and Dalton, 1999). In 1999, the
prevalence of Alzheimer's disease in adults with developmental
disabilities was 3 percent of adults age 40 and older and 6 percent of
adults age 60 and older; for adults with Down syndrome, the rates were
22 percent and 56 percent, respectively (Janicki and Dalton, 1999).
Because the number of people with Alzheimer's disease is expected to
increase in coming years as this population's longevity increases, the
growing concern among developmental disabilities and aging stakeholders
prompted the examination of the availability of services for the aging
developmental disabilities population by New York State officials. To
address the aging population, the Governor implemented Project 2015,
which involves planning, engagement, and action by 36 New York State
government agencies to prepare for the impact of the aging population
and the increasing diversity of the state's population. NYSOFA is one of
the agencies participating in this project.

In 2001, NYSOFA became aware that developmental disabilities and aging
stakeholders[^4] had formed a consortium to examine the needs of the
aging developmental disabilities population. The consortium produced a
white paper describing this special population's needs and possible
solutions to meet those needs. The following is a selected list of
issues identified in the report:

-   access to specialized medical assessment/treatment;

-   appropriate housing, including environmental
    assessments/modifications;

-   caregiver supports;

-   quality of life gaps;

-   end of life issues; and

-   advocacy and influence in the development of public policy
    (Community Partnership in Aging and Developmental Disabilities
    Services, 2000).

Based on the work of the consortium and at the direction of the
Governor, NYSOFA and the State University at Albany's Center for
Excellence in Aging Services developed a model to provide home and
community-based services for individuals with both developmental
disabilities and Alzheimer's disease, including low-income areas. The
model presented in the grant application included two primary strategies
to enable persons with developmental disabilities and Alzheimer's
disease to age in place:

-   Train a range of staff including administrators, supervisors, direct
    care staff, and family members on Alzheimer's disease and
    developmental disabilities-related topics. The intent was to give
    staff a better understanding of the impact of Alzheimer's disease on
    the developmental disabilities population and to make appropriate
    referrals for services.

-   Create a provider network of professionals skilled at working with
    this population. The Alzheimer's Association created this network by
    subcontracting with providers known to the Area Agency on Aging and
    offering training to staff.

After the grant began, the grant stakeholders including NYSOFA, realized
that providing funding for environmental assessments and modifications
in community residences and day programs to ensure a safe physical
environment was critical to maintaining the grant participant in the
community. The U.S. Administration on Aging agreed to this strategy
during the course of the grant.

The NYSOFA provided grant funds from the state to two Area Agencies on
Aging which then subcontracted with two Alzheimer's Association
chapters. These chapters provided education and training and
subcontracted with long-term care providers for dementia-appropriate
direct services. Additionally, each chapter used funds to support a
local impact evaluation.

## Grant Partners

The primary partners for the grant are list on **Exhibit 3** and
described below.

[]{#__RefHeading___Toc157920273 .anchor}Exhibit 3. Organizational Flow
of First ADDGS Grant

![](media/image2.wmf){width="6.466666666666667in"
height="4.215972222222222in"}

### Bureau of Chronic Disease Services within the New York Department of Health 

As requested by the Governor, the State Department of Health (DOH)
provided the federally-required state match funding and assisted with
initial grant implementation. Additionally, DOH provided NYSOFA with the
names of local community service providers with relevant expertise.
Often, these providers were already collaborating with the Area Agencies
on Aging.

### Office **f**or Mental Retardation and Developmental Disabilities

The State Office of Mental Retardation and Developmental Disabilities
(OMRDD) and its regional offices provided input in the planning process
and supported grant initiatives. Across the state, OMRDD oversees the
funding options, availability, and coordination of services for
individuals with developmental disabilities. The state is divided into
13 regions, and each region has a Developmental Disabilities Service
Office (DDSO) responsible for monitoring and evaluating Medicaid
services provided by day programs/workshops and residences to
individuals with developmental disabilities. A regional OMRDD/DDSO staff
person was assigned to provide technical assistance to the grant
stakeholders who were not as familiar with how the OMRDD system
operates.

### The Albany County Office for the Aging and Monroe County Department of Health and Human Services, the Area Agencies on Aging in Albany and Monroe Counties, Respectively

The role of the Area Agencies on Aging was largely administrative. Each
agency served as the funding mechanism for education, training, and
direct services to persons with developmental disabilities and
Alzheimer's disease, providers, and community caregivers, and monitored
the contract with the Alzheimer's Association chapters. As stated above,
each agency funded its local Alzheimer's Association chapter to provide
dementia-specific education and training to community caregivers and
Area Agency on Aging, developmental disabilities, and long-term care
service provider staff and to broker services to meet dementia care
needs of the participants.[^5] The agencies provided lists of existing
long-term care service providers and contract templates to the
Alzheimer's Association chapters.

### Northeastern NY Alzheimer's Association Chapter (covering Albany County) and the Rochester Alzheimer's Association Chapter (covering Monroe County)

The chapters secured contracts with direct services providers. The
Alzheimer's Association chapter in each region[^6] managed the project
at the local level by:

-   identifying participants;

-   developing care plans to address Alzheimer's disease-related needs;

-   coordinating direct services;

-   providing training to direct care staff working at community
    residences and day programs, and family members and group home
    caregivers;

-   monitoring program effectiveness at the local level; and

-   providing support groups for staff at group homes and family
    caregivers by recruiting facilitators and training them (Alzheimer's
    Association Fact Sheet, 2004).

### Developmental Disabilities Service Provider Network

The providers targeted for this grant included social and medical adult
day care centers and vocational work and sheltered workshop sites
(hereinafter known as day programs), and caregivers of persons with
developmental disabilities and Alzheimer's disease regardless of
community arrangement (e.g., group home and adult foster care). These
providers are primarily funded through the Medicaid home and
community-based services waiver within the OMRDD system. For this grant,
the role of providers was to provide staff to participate in training
from the Alzheimer's Association, identify and refer potential service
beneficiaries, and make changes to programming or the physical space to
address Alzheimer's disease-related needs.

### The State University at Albany's Center for Excellence in Aging Services

Each Alzheimer's Association chapter hired the State University at
Albany's Center for Excellence in Aging Services (hereinafter known as
the SUNY evaluators) to provide the Alzheimer's Association chapters
with assistance in the initial stages of grant implementation, help
conduct trainings, and conduct the evaluation of both sites.

The SUNY evaluators analyzed quantitative information regarding the
impact of services on caregiver stress (through questionnaires with
caregivers) and the qualitative results of focus groups regarding the
perceived impact of the demonstration project. They also examined
perspectives of agency administrators, the impact of the delivery of
training and services, environmental modification, and end-of-life
issues. Their findings are summarized in a final grant report, "New York
State Coordinated Care Alzheimer's Demonstration Project Evaluation"
(Nickle and McCallion, 2005).

## Grant Strategies and Activities to Provide Services

In order for NYSOFA to achieve project goals, grant staff implemented
several strategies. The following subsection describes efforts to
increase access and availability of dementia-appropriate long-term care
services, to develop the workforce, and to influence policy, procedures,
and funding. It also presents grant stakeholders' impressions about the
grant's success.

## Enhancing Access to Dementia-Appropriate Services

According to grant staff, enhancing access to services for individuals
and families was an essential component of the success of the grant to
individuals and families.

### Grant Partner Role and Activities

To improve access to dementia-appropriate services, the Alzheimer's
Association chapters in each county trained developmental disabilities
providers and family members to recognize the symptoms of dementia,
securing a diagnosis of dementia, identifying needs, assessing the
levels of need, creating plans of care, and making referrals for
services in coordination with the chapter's subcontracted direct service
providers.

Several developmental disabilities provider sites also implemented
dementia screening programs for persons with developmental disabilities.
For example, one day program provider reported that the Alzheimer's
Association chapter helped develop a new dementia screening process for
beneficiaries that became mandatory for participants age 40 and older.

In addition to utilizing local resources, as necessary, grant partners
made referrals to the regionally-based Alzheimer's Disease Assistance
Centers (ADACs) to obtain diagnoses of the disease---an eligibility
requirement for gaining access to services and supports. Funded by DOH,
the nine statewide ADACs provide diagnostic and consultative services to
primary care providers in making initial assessment of patients,
including the development of comprehensive care plans, assistance with
the management of complex patient situations, and referrals of patients
to specialty care (New York State Department of Health Web page, no
date).[^7] Ultimately, based on the low numbers of grant participants
who received services from the ADACs and lack of formal diagnostic
work-ups among grant participants, the SUNY evaluators recommended
identifying funding mechanisms to increase the number of formal work-ups
and to develop the capacity for assessments.

As much as possible, grant services wrapped around existing Medicaid- or
state-funded services. For example, in an instance where an individual
was already receiving evening personal care assistance through the
Medicaid Home and Community-Based Services Waiver, the grant funded
morning personal care assistance services to ensure that a participant
could attend a day program. This additional time allowed the individual
to remain in a community residence and day program.

### Partners' Perceptions of the Impact of the ADDGS Grant

Stakeholders reported limited access to services and education for
persons with developmental disabilities and Alzheimer's disease and
their families before the grant. The limitations existed, in part,
because providers and informal caregivers were not familiar with the
symptoms of Alzheimer's disease and did not know how to reach beyond the
developmental disabilities network (and traditional OMRDD resources) to
the aging network for services and training, or whether such resources
were even available.

One of the Alzheimer's Association chapters remarked that the families
caring for persons with developmental disabilities form a tight-knit
community where families support each other, requiring the chapter to
work especially hard to build the trust of the families to accept
information on Alzheimer's disease. A developmental disabilities
provider noted that family members and group home operators were
reluctant to admit that persons in their care had the disease because of
the potential stigma.

Additionally, because of the grant, both of the participating
Alzheimer's Association chapters gained experience in developing direct
services plans, managing and budgeting supportive services, and
providing case management for these services. This expanded role was
beyond the Alzheimer's Association traditional role of providing
consumer and caregiver education, training, and support groups.

One developmental disabilities provider at a day program reported that
before the grant it did not have staff trained to recognize the symptoms
of Alzheimer's disease or physical space able to accommodate persons
with Alzheimer's disease, forcing it to make difficult choices about
whether or not to discharge a participant. This same provider was
grateful that the grant gave the organization the ability to continue to
serve individuals known to staff, in many cases for over a decade.

One of the Area Agencies on Aging noted that it did not have programs
targeted to the aging developmental disabilities population until the
grant. This agency did not routinely identify needs or process requests
for aging services from the developmental disabilities population. After
the grant was implemented, however, the agency began to inform family
caregivers and other caregivers about the services available and the
benefits of the services. The agency felt that the grant resulted in
caregivers having an increased awareness of available supports and
services, including congregate and home-delivered meals, home care, and
companion services.

This same Area Agency on Aging also noted that, as a result of the
grant, the agency received matching funds from the DOH to provide
services to individuals age 50 and up. Typically, Area Agencies on Aging
only provide services to individuals age 60 and older because of the
requirements of the Older Americans Act (although the ADDGS program does
not have this age limitation). And finally, the Area Agency on Aging
reported that many of its case managers began to see the long-term care
community as one that includes seniors and younger adults.

## Enhancing the Availability and Quality of Services

The ADDGS provided staffing, personal care assistance, and environmental
modification to persons with developmental disabilities and Alzheimer's
disease as well as their family members. The chapters handled care
consultation and arranged for services between the individual/family
member and the following types of services: home health care,
transportation, respite, personal care, adult day care, companion
services, short-term care in health facilities and other respite
settings, and environmental modifications. Using grant funding, the
Alzheimer's Association chapters also provided directly or subcontracted
for environmental assessments and provided adaptive tools to promote
independence. The chapters also facilitated discussion and established
support groups for consumers at residential and day sites. **Exhibit 4**
shows the Rochester Alzheimer's Association chapter's program model.

Over the 3-year period, 177 individuals received grant services at a
cost of approximately \$5,000 per individual per year. Of the 177
participants, 21 individuals (approximately 12 percent of the total)
required a change in residential placement, 7 individuals moved from a
residential setting to a skill nursing facility, and the remaining
individuals remained in the same place but required a higher level of
care (Nickle and McCallion, 2005).

[]{#__RefHeading___Toc157920274 .anchor}Exhibit 4. ADDGS Coordinated
Care Grant: Rochester Alzheimer's Association Services for Participants

![](media/image3.wmf){width="6.204166666666667in"
height="2.761111111111111in"}

SOURCE: Monroe Area Agency on Aging, 2006, based on internal Area Agency
on Aging documents.

### Separate Dementia Programming

In close consultation from the Alzheimer's Association chapter staff,
both developmental disabilities day programs interviewed established
separate dementia program areas. One day program noted that instead of
moving clients from room to room (as was done previously), staff rotated
through the dementia program area during the day to reduce clients'
disorientation. Before the grant, if behavioral problems developed, the
person could not remain with the general developmental disabilities
population and was considered at high risk for discharge. To address
these problems, the programs used environmental modifications to change
their physical space and provided staff training. The programs reported
the staff's sense of relief and comfort knowing that these individuals
could now remain at the center safely and engaged in activities. One of
the recommendations of the SUNY evaluation was increasing coordination
between residential and day sites.

The SUNY evaluators indicated that DDSO Medicaid service coordinators
helped the Alzheimer's Association implement the services and
recommendations from the dementia-specific care plans into the larger
care planning process that guides Medicaid funding of developmental
disabilities providers. However, the evaluators saw a need for a more
systematic approach to ensure that dementia-related recommendations were
included in care plans.

### Environmental Modifications

As the grant progressed, it became evident to the partners that physical
changes at day programs and residential settings augmented other direct
services to ensure the persons with Alzheimer's disease and
developmental disabilities could successfully age in place (Nickle and
McCallion, 2005). NYSOFA did not originally include environmental
modifications as part of the grant; however, the U.S. Administration on
Aging later approved these changes either in residential or facility
settings (e.g., day programs). The types of changes included lowering
ceilings (to diminish room noise), carpeting floors, using neutral
paints (to decrease visual stimulation), renovating bathrooms, creating
parlor spaces and Snoezelen rooms,[^8] and establishing gardens and
wandering paths (Harazin and McCallion, 2005).

One of the Alzheimer's Association chapters remarked on the importance
of a support environment stating that, "If you bring someone with
dementia home who cannot walk and cannot move around their environment
independently, it does not matter who you bring in to help. They are not
going to be able to thrive in the environment, regardless of staff
training and the number of available staff."

The SUNY evaluation noted the environmental modifications made to day
programs improved staff effectiveness and client engagement (Nickle and
McCallion, 2005). The findings reiterated that the project was
successful in improving programming, reducing stress on individuals with
Alzheimer's disease and developmental disabilities and the staff who
work with them, and maintaining the person at risk for discharge.
However, researchers found that the staff ratings of likelihood of
discharge did not always reflect what actually occurred (Nickle and
McCallion, 2005).

## Enhancing the Quality and Availability of a Competent Workforce

To support family members and staff in their work with this population,
the Alzheimer's Association, SUNY, and other partners (i.e., physicians
or environmental modifications specialists) provided education and
training on a range of topics related to working with individuals with
Alzheimer's disease (described below). SUNY did not track referrals, but
the grant partners believed this increased knowledge translated into
more referrals. Separate from the grant, SUNY evaluators also conducted
trainings for the DDSO Medicaid service coordinators on Alzheimer's
disease, the disease progression, and effective methods of working with
individuals who have Alzheimer's disease.

Depending on who was in attendance, the trainings were often co-led by
the Alzheimer's Association and SUNY or another specialist (e.g., a
physician or environmental modifications specialist from the University
of Rochester Program in Aging & Developmental Disabilities within the
Strong Center for Developmental Disabilities). Individuals receiving
training included agency directors, administrative support staff, group
home managers and staff, service coordinators, psychologists,
psychiatrists, social workers, and family members. To facilitate ongoing
training at the provider level, the trainers used train-the-trainer
modules. Trainings often occurred at day programs (e.g., day
habilitation programs) and at residential sites (e.g., group homes) to
maximize participation.

In Rochester, the Alzheimer's Association chapter trained more than 800
caregivers across four key education areas including aging, intellectual
disability, and dementia; effective communication; understanding
behaviors; and meaningful activities. In Albany, the Alzheimer's
Association chapter targeted training on dementia services and resources
to different audiences including agency directors, managers, direct care
staff (e.g., certified nursing assistants), and families. Over 500
direct care staff and 100 administrators received training in:

-   project awareness,

-   risk factors,

-   dementia assessment,

-   disease symptoms and progression,

-   communication,

-   responses to problem behaviors,

-   recreation and activity planning, and

-   environmental modifications.

In partnership with the New York State Developmental Disabilities
Planning Council, grant staff from SUNY developed and disseminated a
tool kit to train staff (e.g., direct care and professional staff in
residential and day programs) to support people with developmental
disabilities to live as independently as possible. The two-compact-disc
tool kit is available to agencies across the state to supplement staff
training (**Exhibit 5**).

[]{#__RefHeading___Toc157920275 .anchor}Exhibit 5. Components of the
Staff Training Tool Kit

+-----------------------------------------------------------------------+
| -   **A video and CD-ROM**, "Dementia and People with Intellectual    |
|     Disabilities: What Can We Do?"                                    |
|                                                                       |
| -   **A two CD-ROM self-instructional** in-service and education kit  |
|                                                                       |
| -   **Fact sheets and other informational sheets** issued by          |
|     Alzheimer Disease International, The ARC of the United States,    |
|     the Alzheimer's Association, the University at Albany, the        |
|     University of Illinois at Chicago, and the International          |
|     Association for the Scientific Study of Intellectual Disabilities |
|                                                                       |
| -   **The Edinburgh Principles** for community care of adults with    |
|     intellectual disabilities affected by dementia                    |
|                                                                       |
| -   A 20-item **Quiz on Intellectual Disabilities and Dementia**      |
|                                                                       |
| -   A **Web-based bibliography** on Alzheimer's disease and           |
|     intellectual disabilities and a hard copy of a bibliography from  |
|     the Greenfield Library at the Alzheimer's Association             |
|                                                                       |
| -   **Websites** on Alzheimer's disease and Intellectual Disabilities |
|                                                                       |
| -   **Protocol for recording baseline information** on behaviors of   |
|     adults with intellectual disabilities (Harazin and McCallion,     |
|     2005)                                                             |
+-----------------------------------------------------------------------+

SOURCE: SUNY Albany Center for Excellence in Aging Services,
http://www.albany.edu/aging/IDD/documents/AOAProjectPresentation.pdf

The SUNY evaluation reported that caregivers commented that the
trainings (and the project overall) had made a positive difference in
their lives and the lives of the individuals with Alzheimer's disease
and developmental disabilities. Caregivers reported less perceived
difficulty in caregiving with corresponding improvement in dementia
symptoms, reduced time spent caregiving, and less burnout (Nickle and
McCallion, 2005). The evaluators reported that the trainings made a
difference in the quality, confidence, morale, and competence of direct
care workers. In focus groups, these individuals reported greater
awareness of the signs/symptoms of dementia, and how to more effectively
interact and communicate with individuals and family members.

To determine the impact of the training and services supported by the
grant, SUNY staff randomly selected 69 grant project participants in
both regions (encompassing 8 counties) and interviewed caregivers on two
occasions (6 months apart) concerning the participants in their care.
SUNY administered two interview instruments and a survey regarding the
project participant. The evaluation presented three statistically
significant primary findings: (1) caregivers reported less perceived
difficulty/burden in caregiving with no corresponding improvements in
ADD symptoms; (2) the grant services (and supports) provided a reduction
in behavior perceived as difficult (yelling, swearing, wandering,
confusion, assisting with exercises, daytime supervision, not having
knowledge/training in dementia care, and conflicts on care needs); and
(3) caregivers noted that the grant had made a positive difference in
their lives and the lives of the individual (Nickle and McCallion, 2005,
p. 19).

## Influencing State and Local Policies, Procedures, and Funding for Services

The State Office on Aging believed that using the lessons learned from
the grant to help shape state and local policies, procedures, and
funding for services for individuals with developmental disabilities,
Alzheimer's disease, and other dementias was a key component of the
grant. The State led the dissemination of information about the grant to
other communities to encourage local Alzheimer's Association,
developmental disabilities provider, and caregiver networks to work
collaboratively.

Grant partners recognized changes in state care planning requirements
which allowed persons with developmental disabilities and Alzheimer's
disease to remain at day programs with Medicaid funding, essentially
allowing them to age in place. Additionally, several grant partners
leveraged their participation in the grant to receive additional grants
from the state and foundations in order to continue serving persons with
developmental disabilities and Alzheimer's disease and their caregivers.

### Dissemination

Grant partners had the opportunity to successfully disseminate
information in several forums, including two conferences sponsored by
NYSOFA and the Alzheimer's Association at the conclusion of the grant.
The two conferences were attended by more than 100 professionals from
day programs, Area Agencies on Aging, Alzheimer's Association chapters,
and State agencies at each. Additionally, in spring 2006 NYSARC,
Inc.[^9] invited the state grant project director and the lead SUNY
evaluator to present at a symposium which highlighted grant efforts and
outcomes; they also briefed the Governor's and OMRDD and DOH staff on
several occasions.

The dissemination conferences energized local discussion and planning
efforts. NYSOFA reported that many counties have requested trainings and
materials and at least 10 counties have offered training on assessments
in the post-grant period. Several of the individual ARCs in the state
have contracted with SUNY for technical assistance. The NYSARC
Association implemented a special conference specifically on aging in
spring 2006 (as mentioned above); also, NYSARC developed a strategic
plan on aging and has several regional committees working on this topic.
Additionally, OMRDD convened a Commissioner's Advisory Council on Aging
to provide input on program design and NYSOFA is participating on this
council.

### Partner Relations

Overall, grant partners felt that the stronger relationships between
Alzheimer's Association staff, OMRDD regional staff, developmental
disabilities and long-term care service providers, and Area Agency on
Aging staff resulted in increased access for persons with developmental
disabilities and Alzheimer's disease to services, supports, and
training. All partners reported that after the grant was implemented,
the relationships with other participating providers was strengthened.
Partners commented that the interest and availability of other partners
was an asset; staff reported that they could call any of the providers
and receive answers to their questions in a timely manner. Additionally,
with the implementation of the grant, relations between the aging and
developmental disability network improved. Each was viewed by the other
as a viable and contributing community partner. Even so, the SUNY
evaluation recommended more joint planning and program development
between the aging, health, and developmental disabilities service
sectors.

### Policies and Procedures

One important result of the grant's influence on state policies and
procedures was approval of the OMRDD sanctioned care plans that allowed
the participants with developmental disabilities and Alzheimer's disease
in day programs and adult day sites to remain at the same location with
Medicaid funding as their disease progressed. The OMRDD, and
subsequently the DDSOs, generally require that all individuals
improve/increase their level of functioning annually in order to qualify
for and receive ongoing funding.

Several providers in the developmental disabilities network recognized
through their participation in the grant that this philosophy was not
appropriate for individuals with developmental disabilities and
Alzheimer's disease as they were not capable of making functional
improvements. Grant partners successfully advocated to the local DDSOs
that instead of skill acquisition, skill maintenance and support for
decline was a more appropriate approach for this population. The OMRDD
changed its policies for both regions involved in the grant to approve
care plans that promoted maintenance of activities and quality of life
instead of improved skills for individuals with developmental
disabilities and Alzheimer's disease. (NYSOFA reported that other
regions in the state have implemented a similar policy but does not have
definitive information.) Thus, for example, the goal for an individual
to make eye contact to acknowledge a friend was now approved, whereas
before the onset of the Alzheimer's disease, the individual's goal was
to regularly converse with others. Making eye contact was considered a
success because the individual participated in the activity to the best
of his or her ability.

Another example of the skill maintenance/support for decline was the
decision by OMRDD to allow day programs to provide a daybed for
individuals to take naps. Previously, day programs were not allowed to
have beds available to clients, as sleeping was not considered a
productive activity. However, once day program staff and state case
managers at OMRDD better understood that taking naps was therapeutic and
helps maintain skills, the agency approved day beds and allowed naps if
there was a note from a physician. Often, staff placed the daybeds in
the Snoezelen rooms.

The grant also influenced other grant partners at the agency level.
Because of the success in working with the developmental disabilities
population through this grant, the Albany County Area Agency on Aging
decided to include persons with mental retardation/developmental
disabilities and persons with mental illness into the population served
by the point-of-entry long-term care system that is being developed.
Including these populations was not a state requirement under the
NYANSWERS initiative, but the Area Agency on Aging felt that all persons
with disabilities should be included in the system, rather than just
individuals over 65.

### Funding

The Alzheimer's Association chapters have tried to sustain care
consultation, direct services, and training for persons with
developmental disabilities and Alzheimer's disease by leveraging other
funding sources or absorbing costs into existing budgets. The
developmental disabilities providers remain committed to training their
own staff, seeking dementia-appropriate services for their clients, and
implementing environmental modifications and other life enrichment
services (e.g., memory and sensory adaptations).

The trainings developed by both Alzheimer's Associations for families
and staff are now a component of their training repertoires and
available to interested agencies or individuals. The Rochester
Alzheimer's Association chapter also received grant funding from OMRDD
to continue dementia support services. The ADDGS grant essentially
served as a pilot for the subsequent grant which allowed the Alzheimer's
Association to sustain many of the ADDGS grant services. The New York
State-Options for People Through Services (NYS-OPTS) grant program funds
the follow-on grant, which requires projects to focus on building
person-centered services in the areas of employment, transitional
services, community inclusion in social activities, independent living
skills and educational opportunities (Commission on Quality of Care Web
page, 2005). With the \$5 million OPTS grant, the Alzheimer's
Association is providing care consultation, discussion groups (formerly
referred to as support groups), education for providers and family
caregivers, and life enrichment (e.g., environmental modifications,
transportation, and respite).

The same day program providers mentioned above have also sought
additional funding from state and community foundations. For example,
the Monroe County ARC, which runs a day program, received two small
grants from a local foundation to create a music and exercise program
and additional money for further environmental modifications, totaling
over \$100,000.

# SECTION 3 POINT-OF-ENTRY GRANT (JULY 1, 2005--JUNE 30, 2008)

In July 2005, the New York State Office on Aging (NYSOFA) began
implementing the second Alzheimer's Disease Demonstration Grants to
States (ADDGS) grant, which is designed to create a dementia-capable
single point of entry (POE) that utilizes a county-based long-term care
central assessment system and works effectively with existing
state-funded Alzheimer's disease screening and service delivery system
in rural areas and ethnically diverse small cities (McCallion and
Harazin, 2005; New York ADDGS Project Summary, 2006). Through the grant,
two counties integrated dementia services, education, and training to
the existing Area Agency on Aging-based POE system. Previously, an
individual with Alzheimer's disease or family-member requesting supports
or services would have received fragmented care and been referred to the
Alzheimer's Association for Alzheimer's disease-related assistance.
Within the newly integrated system, the Alzheimer's Association staff
and Area Agency on Aging case manager provide information and access to
a full range of services related to long-term care.

Individuals living in rural areas and persons who are ethnically diverse
and living in small cities are of particular concern to NYSOFA officials
because few services and supports are currently available to them.
Additionally, some services available to individuals in large urban
areas are not necessarily available to those individuals residing in
small cities or rural areas (McCallion and Harazin, 2005). NYSOFA's
primary criteria for selecting the two counties to pilot this initiative
were that the counties have a high concentration of rural and ethnically
diverse communities and have exhibited a commitment to and demonstrated
progress toward meeting the goals of the NYANSWERS initiative. In 2004,
the Governor established the Access New York Service With Effective
Responsive Supports (NYANSWERS); it is designed to change the design and
delivery of state, private, and publicly funded long-term care programs.
The intent is to create a point of entry system offering long-term care
including screening, information, assistance, assessments, and access to
public and private community based care (McCallion and Harazin, 2005).

In the first year of the second grant, the grant partners in both
counties developed the policies and procedures that facilitated the
inclusion of persons with Alzheimer's disease into the existing POE
systems and began providing direct services to this population. In the
spring of 2006, both counties began serving clients[^10] and providing
trainings to agency administrators, direct care staff, caregivers, and
grant service providers. As of June 30, 2006, the two POEs received a
combined 80 referrals and deemed 27 individuals eligible to receive
services.[^11] **Exhibit 6** presents the key objectives of the
Point-of-Entry grant. Efforts in the second and third years of the grant
are focused on increasing referrals of persons with Alzheimer's disease
residing in rural and ethnically diverse communities and attracting
primary care physicians and

other medical staff to trainings on dementia and to increase their level
of referrals to the POE system.

[]{#__RefHeading___Toc157920276 .anchor}Exhibit 6. Key Objectives of New
York's ADDGS Point of Entry Grant

+-----------------------------------------------------------------------+
| -   Increase access to dementia-appropriate long-term care services   |
|     for persons with Alzheimer's disease and other dementias by       |
|     creating a dementia-capable point-of-entry and service delivery   |
|     system supported by Area Agencies on Aging, Alzheimer's           |
|     Association chapters, and Alzheimer's Disease Assistance Centers  |
|     (ADACs are described on page 11).                                 |
|                                                                       |
| -   Enhance the availability and quality of direct services for       |
|     persons with Alzheimer's disease and other dementias and for      |
|     family caregivers by contracting with a well-known dementia care  |
|     and advocacy organization to subcontract with providers to offer  |
|     dementia-appropriate services and to coordinate services between  |
|     the providers and clients.                                        |
|                                                                       |
| -   Meet the needs of persons with Alzheimer's disease and their      |
|     family caregivers in rural and small ethnically diverse cities by |
|     hiring a dementia-specific case manager to manage and deliver all |
|     diagnostic and direct care services.                              |
|                                                                       |
| -   Establish a competent workforce for those caring for persons with |
|     Alzheimer's disease and other dementias by connecting families    |
|     and long-term care service providers with dementia-specific       |
|     training, providing informational and educational materials,      |
|     serving as a portal to access community resources, information,   |
|     and other long-term care service options.                         |
|                                                                       |
| -   Disseminate the POE services model, trainings, and examples of    |
|     systems change to other regions in the state.                     |
|                                                                       |
| -   Leverage ADDGS funds to sustain the program after grant funding   |
|     ends.                                                             |
+-----------------------------------------------------------------------+

## Background

The NYANSWERS statewide initiative directs counties to create a POE
system for long-term care consumer access. The POE system provides
consumers with impartial screening, information, assistance, assessment,
and access to appropriate and timely public and private community-based
care options. Similar in philosophy to the U.S. Administration on
Aging's Choices for Independence initiative, the approach of the POE is
to support self-determination, promote personal responsibility, and
provide needed services that are both high quality and efficient.[^12]

In advance of the mandatory statewide implementation of the POE effort,
NYSOFA and the SUNY Albany Center for Excellence in Aging Services
applied for an ADDGS grant. The purpose of this grant is to enable New
York State to integrate services for persons with Alzheimer's disease
living in rural areas and ethnically diverse small towns into the
county-based long-term care central assessment programs and to integrate
services offered by Area Agencies on Aging, Alzheimer's Association
chapters, and ADACs. Both counties selected for the ADDGS grant had
established, mature POE systems in place. The grant funding supported
the addition of a staff with dementia expertise and familiarity with
dementia services to the POE. As depicted in **Exhibit 7**, the intent
of the project is to integrate services offered by Area Agencies on
Aging, Alzheimer's Association chapters, and ADACs in areas where a
large number of rural and ethnically diverse residents resided.
Furthermore, grant services are designed to wrap around existing
Medicaid and state-funded services and intended to be the payer of last
resort for all services.

NYSOFA targeted individuals with Alzheimer's disease living in rural
areas and ethnically diverse individuals with Alzheimer's disease and
their families under this grant because neither group is highly
integrated into the long-term care continuum and few services or
supports are in place to assist them (McCallion and Harazin, 2005, p.
3). Focus groups conducted with Area Agency on Aging and adult
protective services staff by SUNY prior to the start of the grant found
that while increased services and family supports are critical to
maintain individuals with Alzheimer's disease in the community, lack of
assessment, lack of services, and poorly coordinated services and
supports increase the likelihood of these individuals requiring
institutionalization (McCallion, 2004). Furthermore, state initiatives
designed to provide services to individuals with Alzheimer's disease are
implemented in large urban areas, the same services and initiatives are
not necessary adaptable to smaller towns (McCallion and Harazin, 2005,
p. 3.). An increasing number of aging and ethnically diverse individuals
are moving into small towns and cities; thereby reinforcing the
importance of and need for an integrated POE that includes Alzheimer's
disease-related assistance.

According to the 2000 census, nearly 16 percent of New Yorkers are
African American; 6 percent are Asian; 15 percent are Hispanic and more
than 10 percent identify themselves as either multiracial or another
race (U.S. Census Bureau, 2000a). In terms of urbanization, in 2000,
approximately 13 percent of all residents live in rural areas where
accessing health care can be challenging (U.S. Census Bureau, 2000b). Of
the 62 counties in the state, 44 are rural (New York State Office for
the Aging, 2004). Because of these data, the state recognized the
importance of developing policies to address the needs these individuals
in its POE design.

As with the Coordinated Care grant, the current ADDGS grant is led by
the New York State Office on Aging. Also similar to the first grant,
NYSOFA provided funding to the Area Agencies on Aging. These agencies
subcontracted with the local Alzheimer's chapters which in turn
subcontracted with long-term care providers.

[]{#__RefHeading___Toc157920277 .anchor}Exhibit 7. Point of Entry Flow
Chart

![](media/image4.wmf){width="8.199305555555556in"
height="5.634722222222222in"}

SOURCE: New York State Office for the Aging, 2006.

## Grant Partners

The primary partners for the grant were the following organizations
portrayed in **Exhibit 8** and described below.

[]{#__RefHeading___Toc157920278 .anchor}Exhibit 8. Key Partners of the
Point of Entry Grant

![](media/image5.wmf){width="6.495833333333334in"
height="3.123611111111111in"}

### Bureau of Chronic Disease Services within the New York Department of Health 

Similar to the first ADDGS grant, the Department of Health provided the
grant's state match funding. Additionally, DOH assists with the
dissemination of grant information; for example, DOH hosted an
Alzheimer's disease conference in June 2006 and invited NYSOFA staff to
present.

### The Area Agencies on Aging in Fulton and Oneida County, respectively the Fulton County Office for the Aging and the Oneida County Office for the Aging

In both counties, the Area Agency on Aging administers the POE and works
with Alzheimer's Association chapters and ADACs to provide services. At
the agency level, managers and case manager supervisors developed the
structure for how to handle referrals for persons with Alzheimer's
disease, utilizing the knowledge of the Alzheimer's Association and
integrating the referrals into the existing POE system. Case managers
are responsible for working closely with Alzheimer's Association grant
staff to handle the referrals and to assess the needs of individuals
with Alzheimer's disease, develop a services plan, and arrange for
caregiver supports. In some counties, case managers at Area Agencies on
Aging are partially funded by Medicaid; across the state, case managers
are trained in Medicaid home and community-based services waivers and
state plan services, and private pay service options.

### Northeastern NY Alzheimer's Association Chapter (covering Fulton County) and the Central New York Chapter (covering Oneida County)

The Alzheimer's Association grant staff are responsible for providing
care consultation to the POE system case managers, for training staff
(e.g., agency case managers and service provider management and staff)
and brokering direct services to individuals.

### Alzheimer's Disease Assistance Centers

The regional ADACs serve as a community resource for individuals with
Alzheimer's disease and their family members and, as necessary, provide
diagnosis and assessment services. The ADACs also provide patient
management and care, training, education, and consultation, and serve as
a clearinghouse of Alzheimer's disease information. Securing a diagnosis
is needed in order to facilitate the delivery of long-term care
services, including grant-funded services.

### Grant Advisory Committees

In each county, the work of the key partners is supported by a local
advisory committee composed of representatives of aging and dementia
services, long-term care, the medical community, local government, and
other community agencies. The role of the committee is to provide the
following:

-   information on the status of the partners and their ability to
    develop and sustain project goals,

-   assistance in the development of work plans on key project issues,
    and

-   ongoing support of project implementation at the local level
    (Harazin and McCallion, 2005).

### The State University at Albany's Center for Excellence in Aging Services

The Center evaluates the program and provides technical assistance and
staff trainings. Thus far, technical assistance from the SUNY staff has
included working with the Area Agencies on Aging, Alzheimer's
Association chapters, and members of the Advisory Board on design and
implementation of changes in policies and procedures; organizing the
advisory board meeting plans; and designing the program logo used by one
of the counties.

The program evaluation plan includes:

-   collecting data on people with Alzheimer's disease identified,
    diagnostic work-ups completed, care plans developed and implemented,
    caregivers trained, individuals with Alzheimer's disease maintained
    in the community and associated costs;

-   determining changes in service delivery that reflect a better
    relationship between assessment and delivery of services and the
    impact of case management on individuals with Alzheimer's disease or
    family members through interviews with stakeholders and review of
    case files;

-   collecting data on collaborative efforts between grant partners by
    observing meetings and interviewing stakeholders;

-   evaluating the impact of training and direct service delivery on
    family caregivers using pre- and post-administration caregiver
    burden surveys; and,

-   conducting semi-structured interviews with project staff to assess
    expectations of the project (at initiation), ongoing experiences (on
    an annual basis) and satisfaction with outcomes (at the end of the
    project) (McCallion and Harazin, 2005).

## Grant Strategies and Activities to Integrate Services

As a way to achieve the primary goal of incorporating persons with
Alzheimer's disease into county long-term point-of-entry systems, grant
staff has begun to implement several strategies. These strategies are
described below.

### Enhancing Access to Dementia-Appropriate Services

In order to create a dementia-capable POE that will increase access to
dementia services for individuals with Alzheimer's disease and their
families, each county developed a model of integrated case management
and dementia services for persons with Alzheimer's disease that fit into
the existing POE system. The goal is to enable rural or ethnically
diverse persons or caregivers to go to one place to obtain necessary
services, education, and training and centralize care planning and
service delivery to individuals with Alzheimer's disease and their
families, and training for the staff in aging and dementia networks.

The intent of the POE grant is to integrate dementia needs and services
into other aging-related services; increasing access to services while
decreasing duplication of intake information (i.e., repeating intake
information to multiple staff). By providing needs assessments, care
plans, and caregiver support, the knowledge of POE staff to bring
resources to these individuals and their families will increase and will
help persons with Alzheimer's disease live longer in the community. The
grant partners plan to incorporate the expertise of the local
Alzheimer's Association into the Area Agency on Aging case manager teams
in order to: (1) provide training programs for caregivers and agency
staff; and (2) develop new direct services for persons with Alzheimer's
disease and their families. In Oneida County, the Alzheimer's
Association employee (the Alzheimer's disease case manager) is located
at the Area Agency on Aging as a case manager for dementia cases. The
Alzheimer's Association employee is part of the intensive case
management team and is responsible for managing the dementia services.
In Fulton County, the Alzheimer's Association staff meet with Area
Agency on Aging case managers weekly.

### Provider Relationships

Partners reported the grant thus far has served to strengthen and expand
the relationships between the various parties. Area Agency on Aging and
Alzheimer's Association staff had a prior relationship because of
collaboration on the National Family Caregiver Support Program and in
the case of Fulton County, the Area Agency on Aging and the Alzheimer's
Association collaborated on the Coordinated Care grant. All parties
appreciate the accessibility of NYSOFA and SUNY staff in developing the
policy and procedures and noted the Area Agency on Aging case management
staff were an essential component of reviewing and improving the
policies and procedures.

## Enhancing the Availability and Quality of Services

Before the provision of direct services, the Area Agencies on Aging and
Alzheimer's Association chapters, in conjunction with NYSOFA staff and
SUNY evaluators, spent a significant portion of the first year training
staff and implementing the policies and procedures necessary to
integrate Alzheimer's disease-appropriate services into the POE. Both
counties began to offer direct services in the spring of 2006.

Prior to the implementation of the grant, when dementia was suspected,
the Area Agency on Aging referred the individual or caregiver to the
Alzheimer's Association for assistance; now, the two work together to
provide services and case management. Under the grant, the Alzheimer's
Association contracts with the service providers and is responsible for
arranging service provision. The Alzheimer's Association is working to
develop community partnerships that lead to greater awareness of service
availability and to increased interagency activities and cooperation,
ultimately building capacity of the aging network.

The types of services available to individuals include social adult day
care, medical adult day care, transportation,[^13] personal care
assistance, home health aides, housekeeping services, companion
services, respite services, case management, bill payer program,
environmental modifications and representative payee assistance. As part
of the training, Area Agency on Aging case managers are directed to
utilize Medicaid or state-funded services prior to authorizing grant
funds for these services; hence, where possible, the grant is to be used
as payer of last resort and to supplement existing services.

If a dementia diagnosis exists or is expected,[^14] the case manager
develops and implements a plan for services. First, the case manager
conducts a home visit and needs assessment and drafts a care plan.
Second, a case conference is held with staff at the Area Agency on Aging
and Alzheimer's Association to review the service plan; the case manager
communicates with the family, if necessary, to obtain approval for the
care plan. Third, the Alzheimer's Association brokers services with
relevant providers and conducts follow-up with the client/family and
providers. As reported earlier, as of June 30, 2006, 27 individuals in
both counties had begun to receive grant services.

Individuals receiving services live in both rural and urban settings.
Outreach to the ethnically diverse communities is a second year goal of
the grant; staff want to ensure that integration of Alzheimer's disease
expertise and familiarity with Alzheimer's disease services into the POE
is complete prior to including this population. Representatives from
these communities (e.g., refugee resettlement communities for immigrants
from Belarus, Bosnia, and Vietnam) are members of the advisory committee
and are aware of the grant progress to date.

## Enhancing the Quality and Availability of a Competent Workforce

The Alzheimer's Association chapters and SUNY are in the process of
training a range of professionals, including Area Agency on Aging case
management staff, administrators, and direct service providers,
including physicians, nurses, social workers, and community members
(e.g., police, transportation providers, and representatives of
religious organizations). Some of the topics that have been addressed
include:

-   grant information including research components, service contracting
    and payment procedures with providers, and general outreach;

-   the benefits of an active mind in relation to lowering the risk of
    Alzheimer's disease;

-   communication strategies for providers to individuals with
    Alzheimer's disease;

-   key principals of Alzheimer's disease; and

-   cross-agency collaboration and outreach (Harazin and McCallion,
    2005; New York State Office for the Aging, 2006).

The goal of the grant's training component is to reach as many people as
possible who come in contact with the dementia population. In Oneida,
the Area Agency on Aging Alzheimer's disease case manager travels to the
provider agencies to conduct the training to encourage as many staff as
possible to attend the trainings. Families have received in-home
education, training, and referrals to support groups. Grant staff noted
that significant time is spent learning the struggles and challenges of
caregivers and providing assistance to work through them. Trainings and
support groups are available and free to the attendee though not funded
with grant funds.

Grant partners in both counties seek to reach local medical providers
and are actively engaged in outreach to the medical community. One of
the Alzheimer's Association chapters conducted a brown bag training for
physicians, support staff, and community providers during which a
physician in charge of a dementia unit in Albany discussed the benefits
of referring individuals for services; another training will discuss
hands-on care and communication for persons with Alzheimer's disease.
The grant will provide scholarship funds for nurses to attend the
training.

## Influencing State and Local Policies, Procedures, and Funding for Services

As with the first grant, the State Office for the Aging plans to
disseminate information about how to integrate services for persons with
Alzheimer's disease into the state's point-of-entry long-term care
system, particularly in rural and ethnically diverse communities and
smaller cities. This will be accomplished during the last year of the
grant by conducting two regional conferences describing the lessons
learned from the pilot program. SUNY will also develop a manual, which
will be used to help other communities develop and implement a
dementia-capable POE. The timing of the grant is fortuitous because all
counties in the State have to develop a POE system for long-term care
and information from this grant will help them develop a
dementia-capable POE from the outset. Finally, NYSOFA will organize
meetings statewide to identify replication sites throughout the state.

### Policies and Procedures

Both counties report that a more intensive form of case management
exists now because of the grant. Case managers assess clients, develop a
care plan, refer individuals to service providers, and monitor the
progress and changing needs of individuals with Alzheimer's disease and
family members. Before the grant, the case manager would visit the
client, develop a plan, and broker the service but not see the client
again for 6 months. One case manager said this intensive case management
has resulted in more time spent on identifying community resources and
maximizing traditional services. Because of grant funding, the POE staff
are more comfortable working with individuals with Alzheimer's disease
and their caregivers; staff has adequate time to work with individuals
with Alzheimer's disease and their families, educate them about the
disease, and inform them of direct service options. One Area Agency on
Aging reported that the weekly case conferences are a strength of the
system. The brainstorming component and ready access to services are
seen as a make or break point for a family in crisis.

### Funding

One of the grant objectives is to leverage ADDGS funds to sustain the
program after funding ends. Grant partners have not yet discussed
continuation funding, since the project is still in a beginning phase.
The advisory councils are tasked with researching funding possibilities.
Some of the possible options include:

-   seeking greater Medicaid reimbursement for case management services,

-   seeking funding from the national Alzheimer's Association, and

-   requesting funding from local foundations.

The Oneida Area Agency on Aging intends to fund the Alzheimer's disease
case manager position from general revenue after the completion of the
grant. Furthermore, the Oneida Area Agency on Aging has recently
received \$230,000 from the Community Elder Wellness Council which will
be used in conjunction with grant funds to provide home modifications
for seniors and persons with Alzheimer's disease.

# SECTION 4 CONCLUSION

## Coordinated Care Grant

The Coordinated Care grant implemented an innovative approach to provide
services to persons with developmental disabilities and Alzheimer's
disease and their caregivers. Grant stakeholders reported that the grant
successfully created a model for providing home and community-based
services to persons with both developmental disabilities and Alzheimer's
disease and their caregivers; and demonstrated effectiveness of an
approach that blended Alzheimer's disease, aging, and developmental
disabilities service and support systems, and increased collaboration
and cross-agency responses to the home and community-based service needs
of this population.

The SUNY evaluation noted that services and training positively
influenced caregivers who reported less perceived difficulty in
caregiving with corresponding improvement in dementia symptoms, reduced
time spent caregiving, and less burnout. The evaluation noted that
environmental modifications made to day programs improved staff
effectiveness and client engagement. Finally, the evaluation stated that
trainings made a difference in the quality, confidence, morale, and
competence of direct care workers.

The grant approach utilized a number of strategies:

-   *Creating the capacity for developmental disabilities providers and
    family members to recognize the symptoms of dementia, secure a
    diagnosis of dementia, assess levels of need for
    dementia-appropriate services and supports and environmental
    modifications, and create dementia-specific care plans.* Local
    chapters of the Alzheimer's Association served in a consultant
    capacity to the developmental disabilities provider network that had
    not been aware of the symptoms of the disease and the resources
    available to help their clients.

-   *Creating a network of providers offering dementia-appropriate
    direct services (e.g., staff time to help get ready for attending a
    day program) and supports (e.g., support groups).* Local chapters of
    the Alzheimer's Association, using Area Agency on Aging lists of
    aging providers, brokered service agreements with many of the same
    providers to offer dementia-appropriate services and supports. Over
    the 3-year period, 177 individuals received grant services at a cost
    of approximately \$5,000 per individual per year including home
    health care, transportation, respite, personal care, adult day care,
    companion services, short-term care in health facilities and other
    respite settings, and environmental modifications.

-   *Modifying the physical space at day programs and community
    residences to provide a more appropriate space, augmenting the value
    and utility of the more traditional direct services administered
    through the grant.* The provision of environmental assessments and
    modifications was integral to ensuring the person with developmental
    disabilities and Alzheimer's disease remained at day programs and
    community residences (e.g., group homes).

-   *Providing dementia-specific training and education to more than
    1,000 individuals including direct care workers, family members, and
    social workers.* Grant stakeholders believed that the increased
    knowledge base led to more referrals by developmental disabilities
    providers for dementia-appropriate long-term care services. This
    increase was possible because staff were better able to identify
    early signs of Alzheimer's disease in the developmental disabilities
    population and were more skilled at working with this population.

-   *Leveraging additional funding for grant partners from other state
    agencies and foundations to continue providing dementia services to
    the aging developmental disabilities population.* Several grant
    stakeholders successfully applied for funding from foundations and
    the state to support this population with services, supports, and
    environmental modifications and to retain dementia-specialist staff
    positions.

-   *Increasing the flexibility and capacity of the Office of Mental
    Retardation and Developmental Disabilities care planning process for
    Medicaid services to the developmental disabilities population at
    day programs.* Providers utilized their increased knowledge of
    working with the population of persons with developmental
    disabilities and Alzheimer's disease to push for the approval of
    care plans that incorporate activities that maintain skills and
    ensure quality of life, rather than aim to increase skills for
    individuals with developmental disabilities and Alzheimer's disease.

## Point-of-Entry Grant

The Point-of-Entry grant is implementing a model to incorporate persons
with Alzheimer's disease into the population being served by county
long-term care point-of-entry systems, especially those in rural and
ethnically diverse communities. Through the grant, two New York counties
are integrating dementia services, education, and training to the
existing long-term care point-of-entry systems.

The local Alzheimer's Association chapters are providing consultation on
care planning for persons with Alzheimer's disease to Area Agency on
Aging case managers; providing education and training to family
caregivers, direct care staff, and other professionals (e.g., medical
providers); and arranging for a full range of dementia-appropriate
services for the clients in the point-of-entry system. Both entities are
working with the state-funded Alzheimer's Disease Assistance Centers to
secure a formal diagnosis of dementia, and to facilitate patient
management and care.

The grant approach is utilizing a number of strategies:

-   *Providing Alzheimer's disease services through the
    single-point-of-entry system creating an environment where
    individuals no longer have to seek services from multiple service
    systems.* In the first year of the grant, the Area Agencies on Aging
    staff in the two pilot counties consulted with staff from the SUNY
    Center on Excellence in Aging Services, the State Office on Aging,
    the Alzheimer's Association, and other relevant community providers
    to develop the policies and procedures to integrate persons
    suspected of Alzheimer's disease into the existing point-of-entry
    system.

-   *Enabling individuals with Alzheimer's disease to remain in the
    community longer through the administration of comprehensive needs
    assessments, the development of dementia-specific service plans, and
    provision of caregiver supports.* The Area Agencies on Aging are
    collaborating with local Alzheimer's Association chapters and
    Alzheimer's Disease Assistance Centers to ensure that the assessment
    and care planning process reflects an understanding of the unique
    needs and challenges of the population of persons with Alzheimer's
    disease.

-   *Providing dementia-appropriate services and coordinating services
    between the providers and clients.* Both pilot counties began
    serving persons with Alzheimer's disease in the spring of 2006. The
    point-of-entry systems received a combined 80 referrals and deemed
    27 individuals eligible to receive services including social adult
    day care, medical adult day care, transportation, personal care
    assistance, home health aides, housekeeping services, companion
    services, respite services, case management, bill payer program, and
    environmental modifications and representative payee assistance.

-   *Meeting the needs of persons with Alzheimer's disease and their
    family caregivers in rural and small ethnically diverse cities by
    hiring a dementia-specific case manager to manage and deliver all
    diagnostic and direct care services.* Outreach to rural communities
    is ongoing; staff at the Alzheimer's Association and POE are meeting
    to brainstorm and strategize about how to reach out to the rural
    regions. Outreach to the ethnically diverse communities is a second
    year goal of the grant and representatives from several of these
    communities (e.g., refugee resettlement communities for immigrants
    from Belarus, Bosnia, and Vietnam) are members of the local advisory
    committee in Oneida.

-   *Developing a directory for targeted geographic areas listing
    available resources to support persons with Alzheimer's disease to
    assist consumers and professionals in locating available service
    providers.* Having a current listing of resources will expedite the
    process of obtaining needed services and decrease the unnecessary
    stress of caregivers in having to seek assistance from multiple
    service systems.

-   *Establishing a competent workforce for those caring for persons
    with Alzheimer's disease and other dementias by connecting families,
    long-term care service providers, case managers, clergy, and medical
    providers with dementia-specific training, providing informational
    and educational materials, and serving as a portal to access
    community resources.* The Alzheimer's Association and the Center for
    Excellence in Aging Services are offering train-the-trainer modules
    in an effort to support the ongoing education of a dementia-capable
    workforce once the grant ends.

-   *Moving toward intensive dementia case management facilitated by the
    integration of point-of-entry staff with Alzheimer's disease
    expertise and knowledge of related services into the long-term care
    point-of-entry case management team, resulting in a more
    comprehensive care plan.* The Area Agency on Aging staff have
    reported that case management of dementia clients has become
    significantly more comprehensive with the support of the local
    Alzheimer's Association chapters and an increasingly knowledgeable
    case manager staff.

-   *Working to retain the position of dementia specialists on case
    management teams to ensure the sustainability of a formal mechanism
    for addressing dementia needs in long-term care planning*. One Area
    Agency on Aging has already made the commitment to keep a dementia
    specialist on the intensive case management team.

With funding from the U.S. Administration on Aging, the New York State
Office for Aging and its partners created and implemented replicable
methods for (1) delivering dementia services for the developmentally
disabled population which allows this population to age in place**;**
and (2) creating a model for incorporating dementia services into
dementia-capable single point of entry (POE).** **The completed
Coordinated Care grant and the ongoing Point-of-Entry grant have shown
success in developing and delivering resources and services to meet the
needs of individuals with Alzheimer's disease, their caregivers, and
staff working in different settings.

# REFERENCES

Alzheimer's Association Fact Sheet, Administration on Aging Grant
(Coordinated Care), 2004.

Commission on Quality of Care Web page, 2005. Available at:
http://www.cqc.state.ny.us/newsletter/issue89/89opts.htm. Accessed
August 28, 2006.

Community Partnership in Aging and Developmental Disabilities Services,
2000.

Harazin, M. and P. McCallion (March 8, 2005). NY State Office for the
Aging Presentation to the Governor's Staff. "New York State Office for
the Aging Update and Opportunities for Collaboration: The Alzheimer's
Demonstration Grant."

Hepburn, K.W., M. Lewis, C.W. Sherman, and T. Tornatore (2003). "The
Savvy Caregiver Program." *Gerontologist* 43(6):908-915.

International Snoezelen Association website, 2006. Available at:
http://www.isna.de/index2e.html. Accessed August 27, 2006.

Janicki, M.P., and A.J. Dalton (Eds.) (1999). *Mental Retardation,
Aging, and Dementia: A Handbook*. New York: Taylor & Francis.

McCallion, P. (2004). "Facing the Challenges of Dementia." Albany, New
York: NYS OCFS.

McCallion, P. and M. Harazin (2005). "Point of Entry and Persons with
Alzheimer's Disease and other Dementias in Rural Areas: A System Change
Project." pp. 1-23.

McCallion, P. and M. McCarron (2002). "The Caregiving Hassles Scale --
DD Modification. Albany, NY: Center for Excellence in Aging Services.

New York State Department of Health Web page. Available at:
http://www.health.state.ny.us/diseases/conditions/dementia/alzheimer/about_adac.htm.
Accessed August 27, 2006.

New York State Office for the Aging, AoA Project Semi Annual Report,
June 2004.

New York State Office for the Aging, AoA Project Semi Annual Report,
June 2006.

Nickle, T. and P. McCallion (2005). *New York State Coordinated Care
Alzheimer's Demonstration Project Evaluation*. Center for Excellence in
Aging Services, University of Albany, NY.

NYSARC Website. Available at:
http://www.nysarc.org/family/nysarc-family-association-chapter-services.asp.
Accessed August 28, 2006.

U.S. Administration on Aging (no date). About the Administration on
Aging (AoA) Alzheimer's Disease Demonstration Grant Program. Washington,
DC. Available at:
http://www.aoa.gov/alz/public/alzabout/aoa_fact_sheet.asp. Accessed
August 14, 2006.

U.S. Census Bureau (2000a). "American FactFinder: New York State Fact
Sheet." Available at:
[http://factfinder.census.gov/servlet/SAFFFacts?\_event=&geo_id=04000US36&\_geoContext=01000USpercent7C04000US36&\_street=&\_county=&\_cityTown=&\_state=04000US36&\_zip=&\_lang=en&\_sse=on&ActiveGeoDiv=&\_useEV=&pctxt=fph&pgsl=040&
submenuId=factsheet_1&ds_name=ACS_2005_SAFF&\_ci_nbr=null&qr_name=null&reg=&\_keyword=&\_industry=](http://factfinder.census.gov/servlet/SAFFFacts?_event=&geo_id=04000US36&_geoContext=01000US|04000US36&_street=&_county=&_cityTown=&_state=04000US36&_zip=&_lang=en&_sse=on&ActiveGeoDiv=&_useEV=&pctxt=fph&pgsl=040&_submenuId=factsheet_1&ds_name=ACS_2005_SAFF&_ci_nbr=null&qr_name=null&reg=&_keyword=&_industry=).
Accessed September 21, 2006.

U.S. Census Bureau (2000b). "American FactFinder: New York --
Urban/Rural and Inside/Outside Metropolitan Area." Available at:
<http://factfinder.census.gov/servlet/GCTTable?_bm=y&-geo_id=04000US36&-_box_head_nbr=GCT-P1&-ds_name=DEC_2000_SF1_U&-format=ST-1>.
Accessed September 21, 2006.

[^1]: ^\*^ RTI International is a trade name of Research Triangle
    Institute.

[^2]: Two case studies are of the Michigan and Minnesota ADDGS grants,
    and a fourth report is focusing on minority populations across a
    number of states.

[^3]: Within the Office of Mental Retardation and Developmental
    Disabilities (OMRDD) system, three models of care provision are
    funded for persons with developmental disabilities: individualized
    residential alternatives (e.g., group home), community residences,
    and intermediate care facilities. Additionally, adult foster care is
    funded as a family-based care model.

[^4]: The stakeholders included: Rochester area developmental
    disabilities and aging providers, the Golisano Foundation (a local
    foundation supporting programs for individuals with developmental
    disabilities), and Developmental Disability Service Organization
    (DDSO) staff in two communities (the Finger Lakes and Central New
    York regions).

[^5]: The role of the Alzheimer's Association chapter as a service
    broker was to assist families and individuals to make informed
    decisions about what will work best for them, identify providers of
    the services, and ensure that the service is in fact provided to the
    individual or family.

[^6]: During the grant, both the Rochester and the Northeastern New York
    chapters of the Alzheimer's Association provided services to
    individuals in nine counties in their respective regions.

[^7]: For more information see
    http://www.health.state.ny.us/diseases/conditions/dementia/alzheimer/about_adac.htm.

[^8]: Snoezelen is derived from the words "snuffeln" (to sniff, to
    snuffle) and "doezelen" (to doze, to snooze). This treatment was
    developed in the Netherlands in the 1970s by facilities caring for
    severely disabled people. A Snoezelen room is designed to use light
    and sound to create a relaxing and activating effect. The specific
    design directs and arranges the stimuli; it creates interest, brings
    back memories, and guides relationships. A Snoezelen room is
    intended to induce well-being, diminish fear, and increase an
    individual's sense of security (International Snoezelen Association
    Web site, 2006) http://www.isna.de/index2e.html.

[^9]: NYSARC is a statewide advocacy organization for individuals with
    developmental disabilities that provides early intervention, health
    care, education, preparation for employment, help in finding and
    keeping a job, independent living, skill training, leisure and
    recreation activities and spirituality (NYSARC Web site, no date,
    http://www.nysarc.org/family/nysarc-family-association-chapter-services.asp).

[^10]: As of June 30, 2006, services have included home health care
    (personal care and respite), referrals to both social and medical
    model adult day care, companion services, transportation, enrollment
    in the Safe Return program, the purchase of a "Med Ready" pill box,
    and environmental modifications.

[^11]: The grantee anticipated enrolling 40 individuals with Alzheimer's
    disease during the first year and 80 individuals in each of the
    second and third years; these numbers are combined totals for both
    counties.

[^12]: For more information on Choices for Independence, see:
    <http://www.aoa.gov/about/legbudg/oaa/Selected_Provision_For_Choices.doc>.

[^13]: In addition to transportation to and from the home and day
    programs, the grant also reimburses participants for transportation
    to and from the ADACs. Because the ADACs are located far from the
    grant service area, individuals cited the lack of and cost of
    transportation as a barrier to obtaining dementia assessments and
    diagnosis. Providing for transportation to the ADACs was viewed as a
    way to increase access to services.

[^14]: Grant staff will approve the implementation of services to
    individuals prior to a dementia diagnosis; however, authorization is
    granted with the understanding that services will be stopped if
    there is not a dementia diagnosis.