Care for persons with dementia is often fragmented both within and between aging and developmental disabilities services systems. Although coordination between these systems is an ever-evolving process, at present, aging and disability systems collaboration is guided by the ideological convergence of their interest in supporting community living in the least restrictive settings for all populations (Putnam, 2014). Integration at the systems level with a dementia focus is being fostered by both federal and state support through programs such as the Alzheimer's Disease Supportive Services Programs and ADRC (Administration on Aging, 2015a, 2015b).
6.2.1 New York
Although many initiatives to integrate the aging and IDD service networks have been limited and short-term (Factor et al., 2012), efforts to integrate these systems in New York State have been ongoing for nearly 30 years (K. Bishop, National Task Group, personal communication, March,10 2015; T. Galbier, Alzheimer's Association Rochester & Finger Lakes Region Chapter, personal communication, March 2, 2015; M. Romano, Oneida County Office for the Aging/Continuing Care, personal communication, March 13, 2015). A focal point for this integration has been to ensure that formal services and family care supports are prepared for the growth in need for dementia care by persons with IDD and their caregivers.
6.2.2 Oneida County Office for the Aging/Continuing Care Advisory Council's Special Populations Subcommittee
In 1986, the Oneida County Aging and Mental Retardation and Developmental Disabilities Coalition was formed by the Oneida County Area Agency on Aging, other aging community-based organizations and developmental disabilities providers (e.g., The Arc, Oneida-Lewis Chapter). Their focus was to bridge the aging and IDD networks, beginning with identifying and assisting elderly caregivers of adult children with developmental disabilities who had not previously received any network services. The caregivers were connected to support services, including Medicaid waiver programs and adult day services. As early as 1991, the coalition created resources on aging and developmental disabilities, including dementia. Today this group is an active, formal standing committee of the Oneida County Office for the Aging/Continuing Care with a broad membership of long-term care facilities, developmental service providers, senior centers, Alzheimer's Association Chapters, and other aging services providers who continue to focus on ways to improve the systems of care for all persons aging with developmental disabilities (M. Romano, Oneida County Office for the Aging/Continuing Care, personal communication, March 13, 2015).
6.2.3 Alzheimer's Disease Demonstration Grants to States (ADDGS) Grant
From 2002 to 2006, with funding from the U.S. Administration on Aging, the New York State Office on Aging (NYSOFA) implemented its first ADDGS grant designed to increase the ability of persons with developmental disabilities and AD to age in place in spite of their disease progression (Osber et al., 2007). NYSOFA and its partners created and implemented replicable methods for (1) delivering dementia services for persons with developmental disabilities which allow people to age in place; and (2) incorporating dementia services into a dementia-capable single point of entry system. The grant also established a network of local aging and IDD service providers offering dementia-appropriate direct services and a technical assistance center at the University at Albany. In support of the ADDGS activities, statewide trainings on intellectual disabilities and dementia were supported by the New York State Developmental Disabilities Council and by New York State ARC, and collaborative training with the New York State Hospice Association.
6.2.4 Assistive Support: Dementia Supports Program (ASDSP)
In 2006, the Alzheimer's Association Rochester & Finger Lakes Region Chapter developed the ASDSP for individuals with developmental disabilities and dementia. The program, which grew out of their involvement in the ADDGS project, is structured around the "aging in place" model, which emphasizes helping individuals to remain in their community, in familiar surroundings, and close to family and friends for as long as possible (Dixon, 2008).
The ASDSP is part of an interdisciplinary team approach to community-based care coordination for persons with developmental disabilities. ASDSP care consultants are part of the interdisciplinary team, which includes representatives from provider organizations that have a relationship with the participant, including the service coordinator, clinicians, social workers, medical staff, managers and advocates. Community partners include Lifetime Assistance, Inc.; Arc of Monroe; and Continuing Developmental Services.
The team develops and implements an individualized service plan (ISP) with the individual and his or her caregiver(s). An ISP is a written document that typically lays out when and where services will be provided and what goals those services will help the individual and his or her caregiver(s) attain. ASDSP care consultants lead ongoing, comprehensive assessments of the participant's dementia-specific needs. Semi-annual ISP review meetings take place with the consumer, family members, and other caregivers (T. Galbier, Alzheimer's Association Rochester & Finger Lakes Region Chapter, personal communication, March 2, 2015). In addition to ISP development, service options for participants include home safety assessments by an occupational therapist with specialized training in dementia care; oversight through monthly face-to-face contact and phone consultation with ASDSP care consultants to ensure that dementia-specific needs outlined in the ISP are addressed; participant-driven, on-site guided education and discussion on dementia-related issues are offered by day service staff; and informal peer discussion groups meetings with other participants to develop a greater sensitivity to the changes observed in their peer.
Although the program was originally funded through an agreement with the New York State Office for Persons with Developmental Disabilities (NYS OPWDD) to provide services to consumers enrolled in the Options for Persons through Services program, the Alzheimer's Association Chapter now works with consumers and IDD network care providers as a certified NYS OPWDD Medicaid provider. The program director reports that participants have shown improvements in their ADLs and reductions in behavioral disturbances (T. Galbier, Alzheimer's Association Rochester & Finger Lakes Region Chapter, personal communication, March 2, 2015).
6.2.5 Dementia Capable Systems Integration Grant Program
In 2011, the New York State Office for Aging was awarded a U.S. Administration on Aging Systems Integration Programs to Create Dementia Capable, Sustainable Service Systems for Persons with Dementia and Their Family Caregivers grant. This grant focuses on integration of statewide programs, using a Single Entry Point/No Wrong Door, for people of all ages in need of long-term care services regardless of income levels, including persons with intellectual disabilities and dementia. In New York, NY CONNECTS is an ADRC and serves as the state's Single Entry Point/No Wrong Door.
The Systems Integration grant programhas a goal of improving the dementia capability of all community-based long-term care services. This grant includes seven multicounty/regional local partners consisting of NY CONNECTS, six Alzheimer's Association Chapters, and one community-based nonprofit dementia services organization in Long Island. These partners routinely engage in cross-referrals and cross-training with a goal of formalizing their relationships.
6.2.6 Systems Integration Dementia Workgroups
As part of the Systems Integration grant, two workgroups have been formed to address dementia, including issues specific to persons with intellectual disabilities (M. Romano, Oneida County Office for the Aging/Continuing Care, personal communication, March 13, 2015). A Dementia Screening Work Group will recommend what dementia screening elements should be incorporated into entry-level consumer intake process through the local NY CONNECTS(Lines et al., 2015). The Dementia Screening Work Group will review available tools and instruments, including those specific to the IDD population, to develop the best approach for New York. In addition, a Dementia Capable Work Group is defining protocols for NY CONNECTS to address dementia services across all populations, including those specific to persons with IDD and dementia.
6.2.7 Guidelines for Structuring Community Care and Supports
Community care and supports for people with IDD have not historically planned for the long-term, high-level needs of persons with dementia, leaving them unprepared for the changes in the needs of the adults they serve (R.Lucchino, Emeritus Professor Utica College, President of the Board, Area Agency on Aging for South West Florida, personal communication, March 8, 2015). To assist agencies supporting families or other in-home caregivers providing dementia care to adults with an intellectual disability or agencies developing and operating residential settings for persons with an intellectual disability affected by dementia, the NTG developed "Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia" (Jokinenet al., 2013).
This model provides recommendations for care management and services for people with IDD in the pre- and post-diagnosis stages, including early, mid-, late, and end-stage of the disease progression. In the pre-diagnosis stage, the emphasis is on the early recognition of first signs and symptoms of dementia, which can often go unnoticed or be simply ignored by caregivers. Any suspicions of dementia based on changes in behavior should be validated by the use of an early detection screening tool (such as those mentioned previously in this paper), followed by a formal assessment and diagnosis. In post-diagnosis stages of dementia, the focus is on care planning, training and outcomes, and appropriate actions are recommended for each stage.
In addition to recommendations for each stage of dementia, the guidelines provide setting-specific recommendations for individuals living in a private home with a family member or a caregiver, living alone, living in group homes, and for those living in residencies that specialize in dementia care and those attending adult day services. Other issues covered in this publication include abuse, financial management, nutrition, medications, and managing personal choice and liability.