New York

Congressional Profiles

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NEW YORK 2021 STATE POLICY PRIORITIES

Support Dementia Caregivers by Protecting the Alzheimer’s Disease Caregiver Support Initiative (ADCSI)

New York State is facing its largest budget crisis in over a decade with challenges in Medicaid and the additional costs to address COVID-19. While cuts are expected across many state government programs, it is critical that state government leaders protect the Alzheimer’s Disease Caregiver Support Initiative. This evidence-based initiative delays placement in long-term care, preserves family savings, reduces Medicaid spending and has allowed community partners to expand statewide programs and services to empower all New Yorkers to be proactive in their approach to Alzheimer's and brain health. As we move into the 2021 legislative session and New York State Budget deliberations, the Alzheimer’s Association and advocates will urge Governor Cuomo and state legislators to preserve the current funding level of $25 million in the upcoming budget for the Alzheimer’s Disease Caregiver Support Initiative.

Ensure People with Alzheimer's and Dementia Qualify for Community-Based Long Term Care Services

New York State instituted a number of changes in the 2020-2021 state budget which modified eligibility criteria for people with dementia seeking Community-Based Long Term Care Services. This change hinders access to nursing services in the home; therapies in the home; home health aide services; personal care services in the home; adult day health care; private duty nursing; and Consumer Directed Personal Assistance Services. New York State must amend it's 1115 Medicaid Waiver to be consistent with this change and submit it by early March 2021 with a period of public hearings taking place in January 2021. The Alzheimer's Association will provide further public comment during these hearings in January to extend current programs and waiver authority, ensuring that those with a dementia diagnosis requiring assistance with at least one activity of daily living (ADL) can qualify for Community-Based Long Term Care Services.

New York Must Focus on Early Detection and Diagnosis

Alzheimer’s and dementia is a growing public health crisis in New York. The burden of the disease in our state is large and growing larger. Currently, an estimated 410,000 New Yorkers are living with the disease, which is expected to rise to 460,000 by the year 2025 – a 12 percent increase over the next five years. Caring for these individuals has a significant impact on our state. In 2020, the cost of providing care to these individuals through Medicaid was $5.4 billion and is expected to increase by 23 percent by 2025. The Alzheimer’s Association is calling on the Department of Health to run additional Public Awareness campaigns to educate the public about brain health and cognitive aging, changes that should be discussed with a health professional, and the benefits of early detection and diagnosis.

Enhance the Coordinating Council and Update the New York State Alzheimer’s Plan in 2021

In 2007, New York State established a Coordinating Council composed of 21 stakeholders to focus on services for people with Alzheimer’s and other dementias. The Council is charged with facilitating interagency planning and policy-making, reviewing specific agency initiatives around dementia care, enabling ongoing discussions and providing a biyearly report to the Governor and Legislature with specific policy recommendations. In recent years, however, there have been seven unfilled vacancies on the Council which have delayed policy recommendations and actions. The Alzheimer’s Association is urging state policymakers to fill these vacancies to enable the Council to issue recommendations toward improving quality of life and quality of care for people with dementia, supporting family caregivers, advancing early detection and diagnosis and building a dementia-capable workforce.



New York State Plan Overview

The New York State Coordinating Council for Services Related to Alzheimer's Disease and Other Dementias (Council) 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 policy-making, review specific agency initiatives for their impact on services related to the care of persons with dementia and their families, and provide a continuing forum for concerns and discussions related to the formulation of a comprehensive state policy for Alzheimer's disease. The Council is charged with providing reports to the Governor and the Legislature every two years beginning in June 2009. The reports must set forth the Council's recommendations for state policy relating to dementia and include a review of services initiated and coordinated by public and private agencies to meet the needs of persons with Alzheimer's disease and other dementias and their families, this report provides a beginning to this review. New York's 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 in December 2009 with updated reports published every two years thereafter. The most recent report is entitled 2019 Report of the New York State Coordinating Council for Services Related to Alzheimer's Disease and Other Dementias.





ADVOCACY EVENTS

New York State Advocacy Day

February 09, 2021

Join hundreds of others from around New York State at a virtual event in support of the over 410,000 New Yorkers living with Alzheimer's disease, families and caregivers. Meet your lawmakers, share your story and advocate as we fight to restore funding and other policies that provide community support while also equipping the medical system to provide early diagnoses, quality care management, and linkages to community services. Don't forget to wear purple! #ENDALZ


Sign Up to Learn More About Advocacy Opportunities in New York


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State Affairs Contact Ian Magerkurth | 631-707-3060 | [email protected]



Alzheimer's Facts and Figures in New York

Number of People Aged 65 and Older With Alzheimer's by Age

Year 65-74 75-84 85+ TOTAL
* Totals may not add due to rounding
2020 58,000 170,000 190,000 410,000
2025 61,000 200,000 200,000 460,000

Percentage change from 2020

Medicaid

$5,453

MILLION

Medicaid costs of caring for people with Alzheimer's (2020)

15.6%

change in costs from 2020 to 2025


Medicare

$31,353

per capita Medicare spending on people with dementia (in 2019 dollars)


HOSPICE (2017)

7,669

#

of people in hospice have a primary diagnosis of dementia


16%

of people in hospice with a primary diagnosis of dementia

Geriatricians

605

Number of geriatricians in 2019


35%

increase needed to meet Alzheimer's population needs in 2050

Hospitals (2017)

1,446

#

of emergency department visits per 1,000 people with dementia


23.7%

dementia patient hospital readmission rate


23.9%

increase in emergency deparment visits since 2007

Caregiving

1.01 Million

Number of Caregivers



1.15 Billion

Total Hours of Unpaid Care



$15.09 Billion

Total Value of Unpaid Care


Number of Deaths from Alzheimer's Disease (2018)

3,755 total deaths in New York

For more information, view the 2020 Alzheimer's Disease Facts and Figures report at alz.org/facts.

U.S. Statistics

Over 5 million Americans are living with Alzheimer's, and as many as 13.8 million will have the disease in 2050. The cost of caring for those with Alzheimer's and other dementias is estimated to total $305 billion in 2020, increasing to $1.1 trillion (in today's dollars) by mid-century. Nearly 1 in 3 seniors who dies each year has Alzheimer's or another dementia.



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