May 30, 2024
U.S. Dept. Health & Human Services
Office for Civil Rights
200 Independence Avenue, S.W.
Washington, D.C. 20201
https://ocrportal.hhs.gov/ocr/cp/
To Whom It May Concern:
We are Medicaid consumer advocates from across New York State, and we urge you to
investigate and bar the implementation of a discriminatory restriction to home care services
enacted in 2020.
In November 2020, the New York State Department of Health applied for approval of a
Medicaid 1115 Waiver amendment to implement a new restriction to home care eligibility based
on the number of activities of daily living (ADL) with which a person needs assistance.1 If
implemented, Medicaid recipients will only qualify for personal care or consumer directed
personal assistance if they need physical assistance with three ADL. The law enacting this
change discriminates on the basis of diagnosis; the only exception to the law is for those who
have dementia or Alzheimer’s disease and they are found to need supervision/cueing and
prompting with two ADL.
Advocates in New York State have been pushing for a repeal of this law for four years. The
State has not implemented it due to the maintenance of effort requirements associated with the
state’s spending of funds allocated from the American Rescue Plan Act (ARPA). The
Department of Health has indicated state ARPA spending will be complete by July 1, 2024, and
they anticipate implementing this discriminatory restriction thereafter upon federal approval.
The Centers for Medicare and Medicaid Services indicated to New York State no state plan
amendment is necessary to implement this change. This means this change can be implemented
as soon as the ARPA funds are spent, subjecting people applying for state plan services to this
new restriction. The pending 1115 waiver amendment request would impose the restriction on
people seeking Managed Long Term Care (MLTC) enrollment.
New Yorkers will be denied home care services and enrollment in MLTC if they do not need
assistance with this higher number of ADL than is required now. This new standard will
discriminate against people with many types of disabilities who need verbal or supervisory
assistance as opposed to physical help with ADL. It will also end the cost-effective
Housekeeping program, which provides home care capped at eight hours/week for those who
need help with laundry or shopping because of their disabilities.
1 https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/ny-medicaid-rdsgn-
team-pa7.pdf
2
The law also discriminates on the basis of diagnosis in accessing Community First Choice
Option (CFCO) services, which include home care services, personal care, and consumer
directed personal assistance because, if implemented, individuals who need cueing assistance,
but do not meet the threshold of needing physical assistance with three ADL will be excluded
from CFCO services.
If the law is implemented, this restriction will lead to unnecessary institutionalization. In
addition, an improper situation will arise, in which a Medicaid recipient living in an
institution—eligible for Medicaid-covered nursing home care—who seeks to return to the
community will be unable to access home-based care in the community unless they meet this
heightened eligibility criteria.
We urge you to investigate this matter and bar New York from implementing this change.
Thank you for your consideration. Please contact Lara Kassel, Coordinator of Medicaid Matters
New York, at [email protected] for more information.
Sincerely,
Statewide Organizations
Consumer Directed Action of NY
Cerebral Palsy Associations of NYS
JKS Consulting Group
Medicaid Matters New York
National Academy of Elder Law Attorneys, New York Chapter
New York Association on Independent Living
New York State Adult Day Services Association
New York Self-Determination Coalition
New York StateWide Senior Action Council
New York State Bar Association – Elder Law and Special Needs Section
Not Dead Yet
Self-Advocacy Association of NYS
New York City Organizations
Callen-Lorde Community Health Center
CaringKind, The Heart of Alzheimer's Caregiving
Center for Independence of the Disabled, NY
Disabled In Action of Metropolitan New York, Inc.
Downstate New York ADAPT
Gay Men’s Health Crisis (GMHC)
Golden Years Senior Program – Social Adult Day Care serving South Asian community
Independence Care Systems, Inc.
Maaser Health – Adult Day Care
Metro New York Health Care for All
Mobilization for Justice, Inc.
New York Legal Assistance Group
Riverstone Senior Life Services
St. Nicks Alliance
Sundance Social Adult Day Care Center, Brooklyn
The Legal Aid Society, New York City
United Jewish Organizations of Williamsburg and North Brooklyn
3
Urban Justice Center Mental Health Project
VISIONS/Services for the Blind and Visually Impaired
Woori Adult Daycare, Inc.
Rest of New York State Outside NYC
A2 Associates, LLC
Access to Independence of Cortland County, Inc.
AIM Independent Living Center
ARISE Independent Living Center
Center for Elder Law & Justice
Chautauqua County Department of Health
Chautauqua County Office for Aging Services
Directions in Independent Living
Empire Justice Center
Finger Lakes Independence Center
Independent Living Center of the Hudson Valley
Independent Living, Inc.
Long Island Center for Independent Living, Inc.
Massena Independent Living Center, Inc.
Northern Regional Center for Independent Living, Inc.
Resource Center for Accessible Living, Inc.
Second Home of Long Island Social Adult Day Care (SADC)
Silver Fox Adult Day Centers
Southern Tier Independence Center, Inc.
Wayne County Department of Aging and Youth
Westchester Disabled on the Move, Inc.
Western New York Law Center
cc: Daniel Tsai, Deputy Administrator and Director, CMS Center for Medicaid and CHIP Services
Alison Barkoff, Acting ACL Administrator and Assistant Secretary for Aging
