New York State Alzheimer’s Plan Overview
The New York State Coordinating Council for Services Related to Alzheimer’s Disease and Other Dementias was established in 2007 by Public Health Law § 2004-a (Chapter 58 of the Laws of 2007, Part B). The Council was formed to facilitate interagency planning and policymaking, review specific agency initiatives for their impact on the care of people living with dementia and their families, and provide a continuing forum for discussions related to creating a comprehensive state policy for Alzheimer’s disease. Charged with providing reports to the governor and the legislature every two years beginning in June 2009, the Council provides policy recommendations for addressing the Alzheimer’s crisis and a review of services to meet the needs of people living with dementia and their families. In December 2009, New York released its first state Alzheimer’s plan, the Annual Report of the New York State Coordinating Council for Services Related to Alzheimer’s Disease and Other Dementias, with updated reports published every two years thereafter. New York released the most recent report in 2019, the 2019 Report of the New York State Coordinating Council for Services Related to Alzheimer’s Disease and Other Dementias.
New York 2024 Policy Priorities
Increase Funding for the Alzheimer’s Disease Community Assistance Program
Home and community-based services enable people living with dementia to stay in their homes and be active in their communities for as long as possible, as long-term care can be costly at both the public and private levels. The Alzheimer’s Disease Community Assistance Program (AlzCap) is designed to postpone or prevent nursing home placements and provides support services to individuals living with dementia, caregivers, and communities that are disproportionately impacted by dementia. The Alzheimer’s Association is calling on state legislators to support a $2.5 million increase in funding for AlzCap. This increase would support the program’s ability to achieve the program’s grant initiatives.
Reduce the Financial Burden of Alzheimer’s and Dementia
The costs of health care and long-term care for individuals living with Alzheimer’s and other dementia are significant, with dementia being one of the costliest conditions to society. The Special Needs Assisted Living Voucher Demonstration Program offers vouchers for financial assistance to help pay for costly memory care for the 426,000 New Yorkers living with Alzheimer’s. Currently, the state has a maxim of only 200 vouchers and a growing waitlist for the program. The Alzheimer’s Association is calling on state lawmakers to increase the number of vouchers to 500 to further reduce the financial burden of Alzheimer’s and other dementia.
Establish Special Needs Assisted Living Programs
Alzheimer’s often causes individuals to exhibit disruptive behaviors that sometimes prevent them from living in long-term care settings such as assisted living facilities and nursing homes. When long-term care facilities refuse to admit individuals exhibiting dementia-related behaviors, and receiving care in a home or community-based setting is not viable, caregivers may find themselves moving their loved one to a costly facility outside of their home state. The Alzheimer’s Association and advocates are calling on state legislators to establish, license, and regulate special needs assisted living residences under the Department of Health to serve people living with Alzheimer’s and neurodegenerative diseases.
Support Dementia Caregivers Through Tax Credits
Alzheimer’s is a devastating disease, but its impact is not just on those living with it. Alzheimer’s and other dementia affects entire families and can bring forth tremendous financial hardships. Last year, New Yorkers provided a total value of $19 billion dollars of unpaid care for their loved ones living with Alzheimer’s. To ease the financial burden of Alzheimer’s and other dementia on caregivers, the Alzheimer’s Association is calling on state lawmakers to support a tax credit for qualified caregiving expenses such as home health aides, adult day care, respite care, and transportation, among other qualified expenses.
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426,500
people living with Alzheimer’s in New York
543,000
New Yorkers are providing unpaid care
$5.5 Billion
Medicaid cost of caring for people living with Alzheimer’s (2020)
3,582
deaths from Alzheimer’s in 2021
16%
in hospice with a primary diagnosis of dementia
44.0%
increase of geriatricians in New York needed to meet the demand in 2050
Resources to Drive Change in New York
The following resources developed by AIM and the Alzheimer’s Association will help you learn more about the issues impacting people living with Alzheimer’s and their caregivers, how New York policymakers are addressing these gaps, and how you can help drive change.