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March 2024

A memo from our Director of Advocacy:


Workforce Report: Labor Shortage Mitigation in New York’s Home Care Sector

March 2023

A report from the Fiscal Policy Institute on the home care sector labor shortage.

The report is available at the following link:

Fiscal Policy Institue Report


Economic Justice Is Disability Justice Report

April 2022

More than two dozen disability organizations, research and advocacy groups, and think tanks have launched the Disability Economic Justice Collaborative, a first-of-its-kind effort to break the persistent link between disability and poverty and finally achieve economic justice for disabled Americans. As part of the launch, a major new study out today from The Century Foundation and the Center for Economic and Policy Research provides the most comprehensive look to date at the staggering scale and scope of the economic crisis facing disabled people in the U.S., and disabled people of color in particular, on nearly every dimension of economic well-being. 

The report is available at the following link:

Economic Justice Is Disability Justice Report


Reducing Costs for Families and States by Increasing Access to Home and Community-Based Services

March 2022

A report out of The Heller School for Social Policy and Management at Brandeis University and the Community Living Policy Center demonstrates how increasing access to Medicaid Home and Community Based Services (HCBS) can reduce out-of-pocket costs for individuals with long-term supports and services (LTSS) needs, their families, and state Medicaid programs. The report complements a recent hearing from the U.S. Senate Special Committee on Aging on the importance of HCBS for people who need care, and what it would take to improve access, including additional funding for caregivers.

The report is available at the following link:


NYAIL Releases the 2021 ILC Informational Flier

February 2021

ILCs are community-based nonprofits run by, and for, people with disabilities. We provide vital advocacy, services and supports to individuals so that they can live fully independent, integrated lives in their community.

NYAIL's 2021 Informational Flier features statistics and relevant information about the importance of ILCs. Available at the following link:


Medicaid Matters One Pager on Repealing the Medicaid Spending Cap

February 2021

New York’s Medicaid spending cap has been in place since 2011. It was presented as a mechanism to limit growth in Medicaid spending and instill discipline in Medicaid budgeting. The cap was set at an arbitrary, fixed moment in time and not designed to keep pace with program growth. The 2021-22 Executive budget would extend the cap for an additional two years.

Available at the following link:


Petition to Shift New York’s Long-Term Care System From Institutional Settings to Community-Based Housing & Supports

January 2021

The New York Association on Independent Living has signed on to a petition calling for New York to move away from institutional settings and support community-based housing and supports. Click here to read the full petition.


CDPAANYS Report: The Impact of COVID19 on Consumer Direction in New York State

August 2020

The Consumer Directed Personal Assistance Association of New York State's (CDPAANYS) issued a survey to collect data on the impact of the COVID-19 pandemic on consumers and workers in the Consumer Directed Personal Assistance Program (CDPA).

Many health conditions that require long-term care, increase the rate of mortality from COVID-19, but the conditions for people using community-based services like CDPA did not receive much attention. CDPAANYS studied how the pandemic was affecting consumers and their access to services, and sent a survey to members in April asking about changes in staffing and access to personal protective equipment (PPE), among other disruptions. The results were used to create this report that was shared with lawmakers and journalists in order to bring attention to the growing long-term care crisis and advocate for legislative solutions.

You can read the final report from the survey, “The Impact of COVID19 on Consumer Direction in New York State,” by clicking here.


NYAIL Releases ILCs on the Frontlines of COVID Flier

May 2020

ILCs have been vital to the local COVID-19 response for people with disabilities. Centers across the state have been offering new services and connecting people to community resources while facing a precarious financial situation that has been created by years of underfunding and possible future cuts. 

ILCs on the Frontlines Flier features examples of core services that are vital for the COVID-19 response for people with disabilities. While also highlighting examples of new supports being created based on community needs.


Disability Advocates Respond to Governor Cuomo via Letter on COVID-19 Policies for People with Disabilities Living in Congregate Settings

April 2020

The New York Association on Independent Living, along with 25 other organizations sent the letter copied below to Governor Cuomo regarding New York’s COVID-19 policies for people with disabilities living in congregate settings. The undersigned organizations have been collectively dismayed at the alarming death toll in nursing facilities and other congregate settings and felt a strong cross-disability response would be the most impactful. Click here to view the letter.


NYAIL Releases New Access to Home Flier

January 2020

Access to Home started with ILCs, but has been underfunded for years. The program funds home modifications for people with disabilities to continue living independently at home. This informational flier explains the basics of the program and why it is needed. 

Access to Home Informational Flier features recently obtained data on the program, a map on counties served, annual funding amounts, and relevant information on how the program has been impacted by underfunding. Available at the following link:


NYAIL Releases the 2020 ILC Informational Flier

January 2020

ILCs are community-based nonprofits run by, and for, people with disabilities. We provide vital advocacy, services and supports to individuals so that they can live fully independent, integrated lives in their community.

NYAIL's 2020 Informational Flier features statistics and relevant information about the importance of ILCs. Available at the following link:


The Danger of Assisted Suicide Laws by the National Council on Disability

October 2019

The purpose of this report is to provide an update to the previous NCD analysis of such laws, to examine whether the NCD predictions about the effect of these laws were correct, and to learn more about the relationship between assisted suicide laws and the provision of lifesustaining medical care and palliative care to people with disabilities.

The report is available at the following link:


N.Y. State Comptroller Releases Audit on State Office for the Aging’s (NYSOFA) Long-Term Care (LTC) Ombudsman Program

October 2019

The New York State Comptroller's Office, Division of State Government Accountability, released an audit on the New York State Office for the Aging's Long-Term Care Ombudsman Program is meeting legal responsibilities to advocate for individuals. The State is required to have an Ombudsman Office under the federal Older Americans Act of 1965 in order to receive certain federal grants. The Office’s mission is to serve as an advocate and resource for both older adults and persons with disabilities who live in LTC facilities, such as nursing homes, assisted living, and board and care homes. There are about 1,500 facilities in the State, housing more than 160,000 residents who have a need for ombudsman services.

The audit found that many residents of LTC facilities in the State lack regular access to ombudsman services. As of January 2019, about 600 of the approximately 1,500 LTC facilities in the State – about 40 percent – have an assigned volunteer ombudsman, leaving the remaining 900 facilities to be covered by only 50 paid local staff, which is about half the recommended minimum number. Eleven of the 15 regional programs fell short of the recommended minimum number of staff, and about 30 percent of facilities were not visited by an ombudsman, leaving residents with reduced access to these important services.

You can access the full audit report by visiting:


U.S. Commission on Civil Rights - Examining School Discipline Policies for Students of Color with Disabilities

July 2019

The U.S. Commission on Civil Rights released a briefing report entitled, "Beyond Suspensions: Examining School Discipline Policies and Connections to the School-to-Prison Pipeline for Students of Color with Disabilities." The report examines compliance with federal laws designed to protect students of color with disabilities from discrimination. It also explores whether the federal government's enforcement of these laws protects these students from discriminatory school discipline practices and policies.

The report findings show persistent racial disparities in disciplinary rates based on disability status and suggests that students of color with disabilities face exclusionary discipline, pushing them into the school-to-prison pipeline at much higher rates than their peers without disabilities.

Click here to access the briefing report or visit the URL:   

The Transportation Network Company Accessibility Task Force Releases Final Recommendations on Ways to Improve Accessibility

February 2019

The Transportation Network Company (TNC) Accessibility Task Force was established in June of 2017 as part of the legislation allowing Uber and Lyft to operate statewide. The disability community strongly opposed TNCs operating statewide because they do not provide wheelchair-accessible service. The Task Force was established to analyze and advise on how to provide accessible and integrated transportation options to wheelchair users and other people with disabilities.

The Task Force received input from the public about their experience with Uber and Lyft and the barriers to using the service. The Task Force has released their report, which includes a series of recommendations to the TNCs and to New York State officials on steps they should take to better serve wheelchair users and others with disabilities.

You can read the report at:

NYAIL Releases the 2019 ILC Informational Flier

December 2018

ILCs are community-based nonprofits run by, and for, people with disabilities. We provide vital advocacy, services and supports to individuals so that they can live fully independent, integrated lives in their community.

NYAIL's 2019 Informational Flier features statistics and relevant information about the importance of ILCs. Click here to view.


NCD Releases Report Evaluating Progress Eliminating Subminimum Wage Employment for People With Disabilities

October 2018

The National Council on Disability (NCD) – an independent federal agency – today released its latest report on trends regarding American workers with disabilities being paid below minimum wage, recent policy changes impacting this employment model, and characteristics of for-profit entity use of subminimum wage work in their supply chains.

National Disability Employment Policy, From the New Deal to the Real Deal: Joining the Industries of the Future is a follow-on study to NCD’s 2012 report, Subminimum Wage and Supported Employment, in which NCD recommended the phase-out of FLSA’s Section 14(c), which in 1938 made legal the payment of subminimum wages to people with disabilities, and the phase-in of supported employment options for people with disabilities.

Six years later, NCD renews its previous recommendations; evaluates the progress that the country has made toward that end; highlights the structural barriers that remain, and clearly identifies the risks should service systems not modernize. This report also highlights several successful examples of transformation in which providers have transitioned away from providing services in segregated settings that paid 14(c) subminimum wages to contemporary models of individualized supported and customized employment services that allow people with disabilities to work and thrive in competitive integrated employment.


An Assessment of the New York Health Act: A Single-Payer Option for New York State

August 1, 2018

The RAND Corporation and the New York State Health Foundation released an analysis of a single payer health plan in New York State. It found that the New York Health Act is likely to increase use of health services as more people receive coverage. But overall health care costs would decrease slightly over time if administrative costs are reduced and state officials slow the growth of payments to health care providers.  Many in the legislature consider passing this a top legislative priority.

Download the RAND report here.


TAC Releases Report Finding that Housing Across the U.S. Costs More Than Their Disability Benefits

December, 2017

A New Report, Priced Out in 2016, chronicles the housing crisis for people with disabilities across the country. The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released Priced Out in 2016, which demonstrates that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) payment of a person with a disability. The study sheds light on the serious problems experienced by people with disabilities across the country and provides valuable statistics and policy recommendations for advocates and policymakers alike.

Download the Priced Out report here.


Report Finds Managed Care Organizations in New York Have Been Systematically Cutting Home Care Hours Without Proper Notice or Legal Justification

July 2016

Medicaid Matters New York (MMNY) and the National Academy of Elder Law Attorneys, NY Chapter (NY NAELA) released a detailed report, undertaken by members of both coalitions, entitled “Mis-Managed Care: Fair Hearing Decisions on Medicaid  Home Care Reductions by Managed Long Term Care Plans.” The report found that since January 2015, Senior Health Partners of Healthfirst and at least two other managed care organizations have been systematically cutting home care hours, typically without proper notice or legal justification. The information was compiled by advocates from publically available data. See the report at the link below:

 CIDNY Releases Report on the Administration of Section Q Referrals in Relation to People With Developmental Disabilities

As part of an agreement with the Centers for Medicaid and Medicare Services (CMS), New York State has to transition hundreds of people with developmental disabilities from institutional settings to less restrictive settings, including transitioning at least 100 people from nursing homes to community-based housing. The Center for Independence of the Disabled, NY (CIDNY) released a report “Wanting to Go Home… Waiting to be Asked: Section Q and People with Developmental Disabilities.” This report looks at how nursing homes are administering Section Q of the federal government’s assessment of the Minimum Data Set (MDS). The report finds:

  • Many nursing home discharge planning staff are not asking the Section Q referral question;
  • Many discharge planning staff assume that people with developmental disabilities will not understand the question;
  • Many discharge planning staff are concerned about family members or individuals being upset;
  • If nursing home staff ask the question—a referral may not be made if the staff determine that discharge is not feasible;
  • Ombudsmen are rarely involved;
  • The roles of the different participants are not understood;
  • There is little State training and oversight

This report is available at the following link:

CIDNY Releases Report Showing How People With Disabilities are Doing 25 Years After the Passage of the Americans with Disabilities Act

October 2015

The Center for Independence of the Disabled, NY (CIDNY) worked with University of New Hampshire Institute on Disability to release their report “Disability Status ADA 25”, which reports on how people with disabilities are fairing 25 years after the passage of the Americans with Disabilities Act (ADA). This report shows the current status of people with disabilities in New York State, each of its regions, and across the boroughs of New York City. CIDNY looked at eight dimensions of well-being for people with disabilities: Education, Employment, Income & Poverty, Health Coverage, Food & Nutrition, Housing, Family Status, and Transportation. The report then compared the outcomes at the State level and in each region of the State to a national “norm”.

View the full report at the following link:


New York State Releases Employment First Report

March 2015

In September 2014, Governor Cuomo signed Executive Order 136 to create a commission to establish an Employment First policy for New York State, making competitive, integrated employment with appropriate supports and services the first option for people with disabilities seeking employment. With the adoption of these policies, the State aims to increase the employment rate of people with disabilities by 5%; decrease the poverty rate of people with disabilities by an equivalent 5%, and engage 100 businesses in adopting policies and practices that support the integrated employment of people with disabilities. This report outlines the recommendations of the Employment First Commission, which held two statewide public listening sessions to help inform their report. NYAIL testified at their listening session and many of our recommendations made the final report.

Available at the following link:


State Board Of Elections Releases Report Providing Guidance to Municipalities on How to Administer Elections Without Relying on Lever Machines

February 2015

In August of 2014, the State passed a law allowing the continued use of lever machines in local elections not held by a local Board Of Elections through December 2015. This law required that on or before January 31, 2015, the State Board of Elections submit a report to the Governor, Speaker of the Assembly, Temporary President of the Senate and the chairs of the Committees on Election Law of the Senate and the Assembly concerning the administration of elections by villages, school districts, fire districts, library districts and other municipal corporations required to hold elections. The report provided a number of recommendations on how to administer these elections in a manner which is accessible to all and affordable to municipalities.

Available at the following link:


New York State’s Olmstead Report Released 

 October 2013

Governor Cuomo issued New York's long awaited Olmstead Implementation Plan, detailing how the State intends to comply with the Supreme Court's Olmstead v. L.C decision of 1999 to ensure individuals with disabilities receive services and supports in the most integrated setting appropriate to their needs. In this plan, the State commits to reducing the long-stay nursing home population by 10% over the next five years.

Available at the following link:


Senate HELP Committee Released Report Showing ADA Compliance Still Lacking

September 2013

In July 2013, the Senate Health, Education, Labor, and Pensions (HELP) Committee released a report revealing that in many states, individuals with disabilities are still not fully integrated into their communities. The report declares that nearly 250,000 working-age individuals with disabilities remain institutionalized. This statistic demonstrates that states are failing to comply with a fundamental requirement of the Olmstead decision of 1999, in which the Supreme Court ruled that unnecessary segregation of individuals with disabilities violates the American with Disabilities Act (ADA). HELP Chairman, Senator Tom Harkin author the landmark ADA, has been an enthusiastic ally and advocate for the disability community. He continues to advocate for American's with disabilities and has strongly encouraged Congress and the Federal Government to continue to take steps towards de-institutionalization and community-based care. The HELP Committee report details several policy recommendations that aim to increase access to Medicaid funded community-based long-term care services across all 50 states.

For more information, visit the links below:
Full Report
Senate Press Release


New TAC study reveals that people with disabilities receiving Supplemental Security Income cannot afford housing anywhere in the U.S.

May 2013

The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force have released a study, Priced Out in 2012, which demonstrates that the national average rent for a modestly priced one-bedroom apartment is greater than the entire Supplemental Security Income (SSI) payment of a person with a disability. The study sheds light on the serious problems experienced by our nation's most vulnerable citizens - extremely low-income people with significant and long-term disabilities.

Priced Out in 2012
compares the monthly SSI payments received by more than 4.8 million non-elderly Americans with disabilities to the Fair Market Rents for modest efficiency and one-bedroom apartments in housing markets across the country. The Fair Market Rent for rental housing is determined by the U.S. Department of Housing and Urban Development (HUD).  According to HUD, rent is affordable when it is no more than 30 percent of income. SSI is the federal income maintenance program that assists people with significant and long term disabilities who have virtually no assets and - in most instances - no other source of income. Priced Out in 2012 reveals that as a national average, people with disabilities receiving SSI needed to pay 104 percent of their income to rent a one-bedroom unit priced at the Fair Market Rent.


New NCD Report Makes Recommendations To Implement Medicaid Managed Care Without Harming Americans with Disabilities

March 2013

WASHINGTON, DC – With no end to the budget conflict in sight, the National Council on Disability (NCD) – an independent federal agency that advises the President, Congress, and other federal agencies on disability policy – today released a report titled "Medicaid Managed Care for People with Disabilities: Policy and Implementation Considerations for State and Federal Policymakers" to assist with the implementation of managed care reforms without harming Americans with disabilities.

In the report, the agency outlines twenty-two principles to guide the design and implementation of managed care services for Americans with disabilities. NCD also recommends that the Centers for Medicare and Medicaid Services (CMS) create and circulate a comprehensive, easy-to-understand procedure spelling out the process for determining state demonstration waiver requests that seek to link Medicaid managed long-term services and supports.

Today, more than two-thirds of the 70 million Medicaid beneficiaries receive at least a portion of their services through a managed care plan. Until recently, the vast majority of these enrollees have been people without disabilities, however, now more than half the states are enrolling adults with disabilities as well as children with specialized medical needs. In addition, the number of States utilizing Medicaid managed care for long-term services and supports jumped from 8 in 2004 to 16 in 2012. This trend will undoubtedly increase as the Affordable Care Act expands Medicaid eligibility next year.

"A growing number of states are providing long-term services and supports through Managed Long Term Services and Supports," said Jeff Rosen, NCD Chairperson. "If implemented wisely, as intended, these changes can expand home and community services, increase inclusion, ensure quality and improve efficiency. If done poorly, decades of progress could be lost. NCD offers these guiding principles and recommendations to provide the kind of technical assistance on the design and implementation of support services that States, providers and consumers have been asking for."

Key Findings

-- At the time of publication, more than half of U.S. states are planning to increase the number of Medicaid beneficiaries enrolled in managed care plans;
-- In 2014, the Affordable Care Act will expand Medicaid to reach millions of low-income uninsured Americans, including many with disabilities, and states are widely expected to rely on managed care organizations to serve the newly eligible population; and
-- Transitioning Medicaid beneficiaries with disabilities into managed care involves a number of challenges. To be successful, services must be tailored to meet the personalized needs of people with disabilities.

Sample Recommendations

-- Design and implementation should be informed with the input of stakeholders, disability experts and providers.
-- Increased incentives for home-and-community based services should be provided and supported in the implementation of managed care plans.
-- An information system should be developed and maintained that enables real-time coordination and case management support.

The full report, including the guiding principles and specific recommendations developed by NCD, are available online at:


Coalition to Protect the Rights of New York's Dually Eligible (CPRNYDE) releases "New York's 2012 Managed Long Term Care Report"

March 2013

       Available at the following link: New York's Managed Long Term Care Report


Advocate on Duals!

April 2012

At least ten states—Ohio, North Carolina, Massachusetts, Vermont, Oregon, Oklahoma, Illinois, Washington, Wisconsin, New York, and Minnesota— have released plans in some form to set up programs for people with disabilities and seniors who are on both Medicaid and Medicare, the so-called duals. These initiatives are supported in health reform through the CMS office on Medicare and Medicaid Coordination.

Over nine million Americans are dually eligible—and the care they receive is some of the most costly in the country, with many dependent on long-term supports and services. Efforts to blend Medicare and Medicaid and integrate services can improve healthcare and enhance independence—or they can be a disaster, an imposition by states of managed care systems that supplant services for bottom lines. It is essential that advocates engage their state officials and CMS on duals initiatives that are being released!

The National Council on Independent Living, Disability Rights Education and Defense Fund, Boston Center for Independent Living, Community Catalyst, and Tri County Independent Living Center have developed the documents below – "Advocacy Principles for Dual Eligible Integration Policy Initiatives" and "Top Ten Priorities for Dual Plans" - to help guide advocacy on duals.

"Incentives for Community-Based Services and Supports in Medicaid Managed Long Term Care: Consumer Recommendations for New York State"

March 23, 2012

The following paper was developed by consumer advocates with recommendations to the State to incentivize community based care in Medicaid managed long term care. It was submitted to the NYS Department of Health and CMS to improve the pending waiver request to mandate managed long term care. NYAIL and several of our member centers have signed on in support of the recommendations, which include:

I. Modify capitation rate structure to incentivize community-based care for high-need individuals

II. Ensure Plans are at risk for nursing facility costs by requiring robust institutional provider networks

III. Contracts should include performance measures that incentivize community-based care and ensure timely provision of appropriate services

IV. Explore the State Balancing Incentive Payment Program (SBIPP) as a potential source of enhanced federal funding

Available at the following link:

"Connecting Consumers to Coverage: The Role of Navigators and Consumer Assistance Programs in Implementing Health Reform in New York"

September 2011

The Affordable Care Act (ACA) directs state health insurance exchanges to establish a Navigator program to coordinate with Consumer Assistance Programs, which together are charged with providing education and enrollment assistance, helping small businesses and individuals make good coverage choices, streamline enrollment, and troubleshoot if problems arise. However, the exact parameters and relationship between the two programs remain unsettled.

This new NYSHealth report, developed by Empire Justice Center and the Community Service Society, clarifies the ambiguities concerning the duties of the two programs, distills key points from discussions and research with nearly 250 stakeholders, and presents recommendations on how New York should design its Navigators and Consumer Assistance Programs to avoid duplication of efforts and best meet the needs of New Yorkers.

Through subcontract with Empire Justice Center, NYAIL worked with Medicaid Matters New York to solicit stakeholder feedback at regional meetings in Troy, Rochester and Watertown regarding the potential role of Navigators and Consumer Assistance Programs in helping New Yorkers enroll in and use coverage as health reform is implemented in our state. The final report highlights the needs of people with disabilities and the role of ILCs in providing enrollment assistance.

Available at the following link:

"Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers"

September 2011

AARP, the Commonwealth Fund, and the Scan foundation developed the "State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers," comparing state data on the availability and quality of long term care services. An executive summary of the scorecard report and its accompanying press release are included below. The scorecard comparison tool and a full report on its findings are available at this link: