Long Term Care Community Coalition


LTCCC offers a wide range of publications related to long term care issues. All can be downloaded for free by clicking on the title unless otherwise noted. If you want a hard copy, please see below for costs of shipping and handling and send check to us at: LTCCC, One Penn Plaza, Suite 6252, NY, NY 10119. 

Medicaid:  A Lifeline for Middle Class Families (pdf) January 2017 

Highlights of the Inspector General's 2017 Work Plan Re. Nursing Home and Long-Term Care (pdf) November 2016

Piecing Together Quality Long-Term Care: A Consumer's Guide to Choice and Advocacy in New York (pdf) November 2016. With funding from the National Consumer Voice, LTCCC has adopted a national guide for NY State, to help New Yorkers facing LTC decisions gain a better understanding of their choices and options and how they can advocate for themselves to get the services they need and want. $20 for a hard copy.

LTCCC Fact Sheet: Admission & Discharge Rights in NY State Nursing Homes (pdf) November 2016

LTCCC Fact Sheet: Medicare Coverage of Skilled Nursing & Skilled Therapy Services (pdf) September 2016

Antipsychotics By Class (pdf) - As of December 2015

LTCCC Submits Comments on Proposed Federal Regulations For Nursing Homes (pdf) October 2015

National Report: Safeguarding NH Residents & Program Integrity: A National Review of State Survey Agency Performance (pdf) April 2015
NY State Report: Safeguarding Residents & Program Integrity in New York State Nursing Homes: An Assessment of Government Agency Performance
(pdf)  April 2015
NY State Report: Executive Summary
(pdf) April 2015
The following interactive charts provide information for all State Survey Agencies on the various criteria covered in the reports. Nursing Home Compare Residents + Citations + Fines 2015 (Excel)   Nursing Home Compare Pressure Ulcer Rates + Citations 2015 (Excel)   Nursing Home Antipsychotic Drugging Rates & Drugging Citations (Excel)  Nursing Home Compare Staffing Levels + Citations 2015 (Excel) All State Medicaid Fraud Control Unit Statistics 2014 (pdf)  April 2015: All Nursing Home Antipsychotic Drugging Rates + Citations (Excel)   April 2015: CMS Update on Antipsychotic Drugging Trends (pdf)

Nursing Home Quality Standards: A Primer for Managed Care Organizations The goal of this primer and resources is to provide useful information on nursing home quality of care and quality of life requirements and a framework for understanding and assessing a nursing home’s quality.  The primer provides general and specific information on laws and regulatory standards that we have identified as important to quality.  All of the standards discussed in the primer are listed in the Table of Contents with a brief descriptive.  The Table of Contents has imbedded links, to assist in quickly locating the provision of interest. It is highly recommended to use the primer as a resource in electronic form, so that relevant information is readily available and accessible when needed. April 2015.

Left Behind: The Impact Of The Failure To Fulfill The Promise of The National Campaign To Improve Dementia Care. This report assesses the effectiveness of the national “Partnership” in reducing the dangerous and unnecessary drugging of nursing home residents. December 2014.

Left Out: Results Of A Survey Of Nursing Home Resident Representatives On The National Campaign To Improve Dementia Care  This brief presents the first of two assessments undertaken by LTCCC on the effectiveness, to date, of the national campaign to address the widespread, inappropriate and dangerous use of antipsychotic drugs on nursing home residents. December 2014.

LTCCC Submission to the United Nations Human Rights Review of the United States: Protecting Nursing Home Residents From Chemical Restraints: Action is Needed to Reduce & Eliminate Widespread Inappropriate Antipsychotic Drugging. September 2014.

Coalition for Quality Care Quality Brief Improving Nursing Home Care: Consumer Priorities for CMS  September 2014.

LTCCC Briefing Paper: CMS Final Rule on 2015 Prospective Payment System for Nursing Homes & Uses of Civil Money Penalties (CMPs) . August 2014.

Antipsychotic Drug Use in NY State Nursing Homes An Assessment of New York’s Progress in the National Campaign to Reduce Drugs and Improve Dementia Care  Executive Summary   April 2014.  Support materials:  Press Release    NYS NHCompare AP Drugs +F329: An interactive Excel file with information on drugging rates and citations for nursing homes across New York State for 2011, 2012 and 2013.    State F-222 Citations - Right to be Free From Chemical Restraints
State F-309 Citations - Necessary Care for Highest Practicable Well Being       State F-329 Citations - Free From Unnecessary Drugs

The New York State Long Term Care Ombudsman Program: An Assessment of Current Performance, Issues & Obstacles   Executive Summary April 2014. 

LTCCC Dementia Care Symposium Report  February 2014.  $5 for a hard copy.   If you would like to bring a training or workshop to your office of facility, please call 212-385-0355.

Mandatory Managed Care in NY State Nursing Homes.  October 2013.  $15 for a hard copy.

Informed Consent Rights in U.S. Nursing Homes: An Overview of State & Federal Requirements This September 2013 report provides a review and assessment of state laws regarding nursing home residents' informed consent rights. It includes a discussion of the 2012 federal bill: The Improving Dementia Care Treatment in Older Adults Act. September 2013.  $15 for a hard copy.   Model legislation on informed consent. 

Nursing Home Policy Brief: Mandatory Minimum Safe Staffing Levels Needed to Protect Current & Future Nursing Home Residents and Their Families  June 2013.  $5 for a hard copy.

LTCCC Memo in Support of the Safe Staffing for Quality Care Act  LTCCC strongly supports passage of this bill in the 2013-14 NY State Legislative session to ensure that our nursing home residents have access to appropriate levels of care staff.  Currently, the majority of states have recognized the need to mandate safe minimum standards. New York leaders should join with those states in protecting our most vulnerable citizens.  May 2013.  $2.50 for a hard copy.

LTCCC Memo in Support of Legislation to Protect Assisted Living Residents.  April 2013.  $2.50 for a hard copy.

Get the Facts About Antipsychotic Drugs and Dementia Care. This brochure was designed especially for families and individuals affected by Alzheimer's Disease and other dementia, to help them understand important issues around the use of antipsychotic medications on people with dementia, know what kind of questions to ask and where to go for further help and information.  March 2013.  $1 for a hard copy.

Federal Requirements Regarding Dementia Care & Antipsychotic Drugs. This report, released October 2012, presents an overview of the federal regulations that may be relevant when antipsychotic medications are used and the specific data tags, called “F-Tags,” that apply to each of the regulations and that are used by state and federal surveyors to code deficiencies. A summary and citation to the applicable federal regulation is provided for each of the F-Tags, to facilitate understanding of the relevant standards and requirements when antipsychotic drugs are used on people with dementia. October, 2012.  $5 for a hard copy.

Nursing Home Surveillance in 10 States - A Comparison of Resources & Financing. This study was conducted to gather financial and programmatic information on the nursing home surveillance systems of a select sample of states across the U.S. The study also aimed to gain insights into the challenges facing the state offices responsible for ensuring quality and safety in our nation's nursing homes and other settings. October 2012.  $2.50 for a hard copy.

Consumer Response: Recommendations and Guidelines of the New York State Medicaid Redesign Team's Managed Long Term Care Implementation and Waiver Work Groups and Their State Implementation. Two briefs, one for consumers and one for policy makers.  2012.  $5 for a hard copy.

Comments on MRT Waiver. NYS has proposed a "super" waiver to the federal Center for Medicare and Medicaid Services (CMS) to permit it to implement the Medicaid Redesign Team's Action Plan. The MRT waiver is an amendment to the state’s existing waiver, the New York Partnership Plan. Partnership has been the primary vehicle used by the state to expand access to managed care. The waiver requests that the federal government allow the state to reinvest up to $10 billion of the $18.3 billion in federal savings over a five-year period. The state has proposed twelve areas for investment. With this paper, LTCCC officially proposed that the state use some of the $2 billion dollars it would get if the "super" waiver was approved for monitoring and oversight of both the transition to mandatory managed long term care as well as for nursing home care. 2012.   $5 for a hard copy.

Consumer Involvement in Medicaid Nursing Facility Reimbursement. The results of a Commonwealth Fund project detailing the importance of consumer participation in states' Medicaid nursing facility reimbursement policy making. The products of the project include: a primer for consumers participation, a brief for policy makers on the need to have consumers "at the table," and a series of webinars for consumers explaining Medicaid nursing facility reimbursement. January, 2012.  For a hard copy of the final report send $15, for the primer or the brief send $5.

LTCCC Statement to U.S. Senate on Antipsychotic Drug Use in Nursing Homes. On November 30, 2011, the U.S. Senate Special Committee on Aging Held a Hearing: "Overprescribed: The Human and Taxpayers' Costs of Antipsychotics in Nursing Homes." This is LTCCC's statement. The hearing recording and materials are available at http://www.aging.senate.gov/hearings/overprescribed-the-human-and-taxpayers-costs-of-antipsychotics-in-nursing-homes. November, 2011. $5 for a hard copy.

Outline of Civil Money Penalty Advocacy Strategies for LTC Ombudsmen & Advocates.  October, 2011.  $2.50 for a hard copy.

Care and Oversight of Assisted Living.    A groundbreaking study of the status of care and quality of life in our state's assisted living facilities and residences and the state's oversight and enforcement of state rules. May 2011. $15 for a hard copy.

Medicaid Redesign in NY State, Statement by LTCCC's Executive Director before Medicaid Redesign Team hearing on need to involve those who will be most affected; need to remember the purpose of the Medicaid program to ensure safety and appropriate care; need to ensure assess to least restrictive setting; and the need for adequate staffing for state's care monitoring function. February 2011. $2.50 for a hard copy.

Government Monitoring & Oversight of Nursing Home Care: The Relationship Between Federal and State Agencies. This report presents an in-depth assessment of how well the state and federal inspection agencies are working to jointly enforce minimum safety, health and quality of life standards in U.S. nursing homes. Downloads: Word 2007 or PDF. Read the Press Release of May 28, 2010: Word 2007 or pdf. May, 2010. $10 for a hard copy.

Vulnerable and Unprotected: The Status of Elderly & Disabled Assisted Living Residents in New York State.

This brief on assisted living in New York State argues that the assisted living marketplace in New York is a mess and, due to provider pressure and greed, the 2004 assisted living law has not lived up to its promise.  May, 2010. $5 for a hard copy.

What You Need to Know About Long Term Care in English and Chinese. These booklets, in English and Chinese, help consumers understand long term care and help them think about what their care needs are, where they want to get care, how they can pay for care and what their rights are. In addition to questions they can ask themselves as they plan, the booklets also list a number of important resources and a table listing different types of long term care programs, the average cost of each program, the types of services offered, eligibility rules and payment options. Click here for the Chinese version.   2010  $10 for a hard copy.

Long Term Care Restructuring in New York State: A Consumer Perspective . This report provides an overview and assessment of long term care programs in terms of consumers' needs and desires and makes recommendations for how system restructuring can better meet the needs of consumers. May 2009.  $15 for a hard copy.

Modifying the Case-Mix Medicaid Nursing Home System to Encourage Quality, Access and Efficiency . This study gathered information from the 35 states using a case-mix reimbursement system to reimburse nursing homes for the care of their Medicaid residents (including NYS). The report gives detailed information on how these states are encouraging access, for hard to place residents, quality as well as efficiency. Using such information as well as telephone interviews with state officials across seven case-study states, the report presents over 30 recommendations for improving the system. March, 2009. $15 for a hard copy.

The Future of Nursing Homes in New York State: Results of Two Roundtable Discussions . With funding from the New York Community Trust, LTCCC hosted two roundtable discussions on the future of nursing homes in NY State.  The roundtables brought together leaders from all of the relevant sectors - government, provider, consumer, worker and philanthropy - to brainstorm to identify the challenges and develop recommendation for future action.  This report describes the roundtables and presents over 100 realistic recommendations for action. 2008. $5 for a hard copy.

New York's Single Point of Entry for Long Term Care: A First Year Assessment of Consumer Experience With Recommendations for the Future . This reports examines first year experience with NY Connects, NY State's single point of entry for long term care, and provides recommendations to ensure that NY Connects truly serves New York's diverse consumer population as it is further implemented.  The report includes a state-wide survey of New Yorkers' knowledge of, and experience with, the system.  2008. $5 for hard copy.

An Assessment of Pay for Performance for Nursing Homes With Recommendations for Policy Makers   This report provides an overview of pay for performance for stakeholder and policy makers, including special sections on issues and consumer concerns, selected experiences to date and recommendations for ensuring that a pay for performance program truly improves nursing home resident care and is not merely a bonus awarded to "good" providers. 2008.  $5 for a hard copy.

White Paper on Making Assisted Living Affordable in New York State . 2008. $5 for hard copy.

Nursing Home Culture Change Power Point Presentation .  This presentation was produced for a workshop developed to educate communities about culture change.  Other resources and information on culture change are also available on the page of our website linked to above.  2008. $10 for a hard copy.

Free Toolkit: Speak Out to Support Safe Nursing Home Staffing Standards.  2007.  $5 for hard copy.

Nursing Home Oversight in New York State: A Regional Assessment.   Vulnerable nursing home residents depend on the state to hold nursing home providers accountable for the care they receive by identifying problems during regular inspections and through investigations of complaints.  This report, supported with a grant from the New York Community Trust, examines the effectiveness of each regional office in ensuring resident safety and quality of life. June, 2006.  $10 for a hard copy.

Developing a New and Better Long Term Care System in NY State. A white paper for the new administration & state leadership to facilitate implementation of policies that better meet the future needs and preferences of all our citizens. 2006.  $10 for a hard copy.

Using Law and Regulation to Protect Nursing Home Residents When Their Government Fails Them.  Despite strong legal requirements for nursing homes to provide good care and dignified conditions for residents, the nursing home crisis continues.  This report, supported with a grant from the Robert Sterling Clark Foundation, identifies the primary legal mandates that are too often disregarded by both nursing homes and government surveillance and provides pragmatic as well as inspiring examples of people and organizations that have overcome systemic hurdles in the fight to protect nursing home residents. 2006. $10 for hard copy.

National Study on Use of Civil Money Penalties to Protect Nursing Home Residents.   Federal Civil Monetary Penalties (CMPs) and State CMPs/fines are imposed by the regulatory agencies that license nursing homes if a nursing home does not comply with regulatory standards. These fines can be used to fund innovative programs to improve the lives of nursing home residents.  This study, supported with a grant from the Commonwealth Fund, examines how states are currently using these funds, provides recommendations for way to make concrete improvements for resident quality of life and care, and provides tools for all stakeholders - families, residents, advocates, ombudsmen and providers - to help realize the potential of CMPs. 2006. $10 for a hard copy.

The New Medicare Prescription Drug Benefit: What Residents of Nursing Homes Need to Know. This short and easy-to-use guide will help people in nursing homes understand their options and responsibilities under the Medicare Part D prescription drug plans that went into effect at the beginning of 2006.  The guides provide basic information as well as a listing of resources for help and more information.  Guides are being sent to nursing homes across NY State. 2006.   $5 for a hard copy.

Single Point of Entry for Long Term Care and Olmstead: An Introduction and National Perspective for Policy Makers, Consumers and Advocacy Organizations .   A study, supported by the Robert Sterling Clark Foundation, of POE and Olmstead implementation across the U.S. and a survey of groups that work to improve care for consumers. 2005. $10 for hard copy.

Nursing Home Residents at Risk: Failure of the NYS Nursing Home Survey and Complaint Systems . Study, supported by the NY Community Trust, of the effectiveness of the effectiveness of the inspection and complaint systems. 2005. $5 for a hard copy.

You're Never Too Old To Feel Good : Guidebooks and video to help older adults identify mental health issues and get care to feel better. Short guides in English & Spanish and a free video - Click above for more information and to Download for free.  2005. 

Assisted Living Guidebooks: Fostering Independence, Choice, and Decision-Making. Four guidebooks: (1) for potential residents; (2) for current residents; (3) for managers; and (4) for direct care staff. These guides offer concrete ideas to improve quality of life and autonomy for residents. Click on title for more information and to Download for free. 2005.

LTCCC Urges New York State Leaders to Consider Costs of Poor Care. 2004. $5 for hard copy.

LTCCC Position Brief: NY State Must Stop Placing Vulnerable People into the State's Most Severely Understaffed Nursing Homes. 2004. $2.50 for a hard copy.

Are the Federal Nursing Home Staff Posting Requirements Serving Consumers?: Report on a study of consumer experience with postings in their nursing home(s), with recommendations for regulatory improvement 2004. $5 for a hard copy. 

Improving Working Conditions for Nursing Home Direct Care Staff : Description of a project in two nursing homes in New York City with a Ten-Step Guide to Improving Working Conditions. 2004.  $5 for a hard copy. 

Certified Nurse Aide Screening and Continuing Education:  A National Survey of State Requirements with Recommendations for Improvement, 2004. $10 for a hard copy. 

Nurse Aide Training in New York: An Overview of Programs and Their Regulation by the State, with Recommendations for Improvement, 2003. $5 for a hard copy.

What Makes for a Good Working Condition for Nursing Home Staff: What Do Direct Care Workers Have to Say? This study is based on focus groups conducted in six nursing homes in NYC. 2003. $10 for a hard copy. 

Certified Nurse Aide Training "Model" Program:. A model program developed by LTCCC's Nursing Home Staffing Committee. July, 2002.  $5 for a hard copy.

Nurse Aide Training: Preparing for the Future, Proceedings of the February 4, 2002 Conference . Summary of information covered at the February 2002 Conference, including Best Practices.  2002. $5 for a hard copy.

Assisted Living in New York State: A Summary of Findings. This is the final report of an in-depth three year study of assisted living. It includes an action agenda for consumers, providers and policy makers to help fulfill the promise of assisted living. 2001. $5 for a hard copy.

Case Studies of Assisted Living in New York: How Well Does the Rhetoric Match the Realities? This report, part of a three year study, describes findings from ten on-site visits to assisted living facilities in NYS by project staff. It discusses aging-in place, autonomy, risk-taking, staffing, finances and regulations. 2001. $15 for a hard copy.

Residents Have the Answers: Improving Quality of Life in Long Term Care (Guide and Video) .   A training package for professional caregivers describing a quality assurance system for quality of life.  To view video click here for part 1.   Click here for part 2.    Click here for part 3.   Click here to download the viewing and resource guide. 2001.

A Survey of Assisted Living in New York State: A Summary of Findings. This report, part of a three year study, summarizes information from 470 telephone interviews of administrators of adult homes, enriched housing and assisted living facilities. 2000. $10 for a hard copy.

Improving Conditions in Nursing Homes: Adding Much Needed Staff . This position paper gives evidence of a staffing crisis in New York State nursing homes and documents the need for mandating staffing ratios in New York State nursing homes. 2001. $5 for a hard copy.

Preparing for Quality Caregiving in Nursing Homes: Major Change is Needed in the Training and Education of Nurse Aides.  Summary of an invitational conference for nurse aides, residents and family members held in Albany in 1999.   $5 for a hard copy.

Improving the Option: Consumers' Perspectives on New York State's Managed Long Term Care Demonstration Project.   This report, from LTCCC's committee on Managed Long Term Care, offers recommendations for protecting consumers of managed long term care. 1999.  $5 for a hard copy.

Managed Long Term Care What Is It? How Can We Improve the Option?  June & July 1999.  $5 for a hard copy.

91 Ideas for Reducing Costs, Enhancing Revenue, and Maintaining Quality in Nursing Homes.
This resource for nursing homes lists findings from interviews with nursing home staff. It offers concrete examples of ways to reduce costs and enhance revenue while maintaining quality. 1998.  $25 for a hard copy.

Subacute Care in Nursing Homes: Consumer and Provider Perspectives on Benefits and Concerns; Recommendations for Oversight.
Analyses of questionnaires sent to consumers across the country and providers in New York State.  ( Download for free part 1 ) ( Download for free part 2 ) 1997.  $15 for a hard copy.

Subacute Care in Nursing Homes: What You Should Know for Those Seeking Subacute Care or Traditional Nursing Home Care.   What is subacute care? What are the concerns and benefits? What questions to ask. For consumers and those working with consumers. 1997. $5 for a hard copy.

An Easy-to Read Guide for Residents, Families and Staff: Rules and Regulations Governing New York State Nursing Homes. The rules nursing homes must follow in lay language.1995. For hard copies: $15.00

The Nursing Home Enforcement System in New York State: Does It Work? Analysis of the New York survey system, deficiencies and enforcement actions. (Download for free part 1 ) ( Download for free part 2 )   June 1995.  $15 for a hard copy.

New York State's Nursing Home Industry Profit. Losses, Expenditures and Quality. Includes differences in sponsorship, location and size.1994. $25 for a hard copy.

The Nursing Home Complaint System: Does It Work? Analyses, by location, of the complaint system in New York State. (Download for free part 1 ) ( Download for free part 2 ) ( Download for free part 3 ) 1992.  $15 for a hard copy.

Modifying RUGs: Responding to Consumer Concerns in New York State. Analysis of the case mix reimbursement system from a consumer perspective. Recommendations even more relevant today given the new Perspective Payment System for Medicare services (PPS).  1991. $10 for a hard copy.

Psychotropic Drug Use With NYS Nursing Home Residents. 1989.  $10 for a hard copy.

Consumers' Guide to Nursing Home Care: The Use of Restraints. A brochure for nursing home residents and their families; written a number of years ago, but still relevant. It explains when restraints can and cannot be used and lists the rights that residents and family members have. It has a checklist for identifying abuse and lists ways to challenge the use of restraints. $5 for a hard copy.

Measuring the Quality of Resident-Staff Interactions. This is a questionnaire, developed under a New York State Department of Health grant, to use with nursing home residents to measure the quality of resident-staff interactions.  $5 for a hard copy.





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Long Term Care Community Coalition
One Penn Plaza, Suite 6252
New York, NY 10119
Tel: 212-385-0355