Patient Resources
| What is the Network? |
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The Patient Advisory Committee has revised the What is the Network? brochure. This brochure informs patients of the role of the Network, its mission and the services the Network offers to patients. This brochure also refers to the complaint and grievance process. Consider using this brochure as part of your CfC requirements to inform patients about the Network in their area. Print out this very colorful, informative brochure for your patient’s today! |
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| Your
New Life |
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A guide for patients and
patient’s families faced with Chronic Kidney Disease (CKD)
or End Stage Renal Disease (ESRD). |
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| Su
Nueva Vida |
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Spanish translated version of Your
New Life. |
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| New Patient Orientation Packet |
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The New ESRD Patient Orientation Packet (NEPOPs) that ESRD patients receive containing orientation materials relative to their plan of care. NEPOPs are distributed through a collaborative effort among the Centers for Medicare & Medicaid Services (CMS), the Networks and the Network Coordinating Center (NCC). |
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| "Bee"
Informed About Your Rights and Responsibilities |
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Patient Advisory Committee (PAC) developed
brochure, with input from the new Conditions for Coverage, that
lists rights and responsibilities of patients, while also describing
the Network grievance policy. |
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| Preparing
for Emergencies |
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A patients guide of what to do prior
to and during an emergency situation. (Spanish Version) |
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| You
Can Live |
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CMS booklet that booklet gives tips
on treating kidney failure, making treatments better and living
a healthier lifestyle |
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| Employment:
A Kidney Patients Guide to Working & Paying for Treatment |
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A brochure developed by Life Options
Rehabilitation Program, supported by the End Stage Renal Disease
Networks and administered by the MEI Institute. This document
can be found on the Network website under Patient Services and
Community. |
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| NKF
Coffee House Conversations™ |
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Conference calls to empower and educate
individuals affected by chronic kidney disease, transplantation
and donation. |
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| Five
Wishes |
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A living will that talks about personal,
spiritual and emotional needs as well as medical wishes. This
document is available on the Network website. |
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| Kidney School |
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Kidney School is a (free) comprehensive online education program for people who want to learn how to manage and live with chronic kidney disease (stages 3–5). It was developed to:
- Offer up-to-date research-based information.
- Help people learn what to expect and what questions to ask.
- Provide the tools patients need to self-manage their care so they can stay healtheir and keep doing the activities they enjoy.
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| Medicare
Entitlement Update |
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This brochure attempts to clarify
misconceptions regarding Medicare coverage and to answer several
commonly asked questions. The Network receives many questions
from dialysis personnel, patients and plan administrators regarding
Medicare coverage. This publication may be useful to these individuals
as well as others interested in entitlement issues. |
Professional Resources
| Improving
Communication Tips |
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Dr. Mark Pettus, a New England Nephrologist and
the son of two dialysis patients; developed the helpful communication
tool entitled "Momentum Turning Questions". These questions
are specifically designed for use in the dialysis setting to enhance
conversations between patients, families and all members of the
therapeutic team. Think of these questions as suggested ways to
approach all types of communication - from the everyday to the
most difficult. |
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| Emergency
Preparedness for Dialysis Facilities |
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A guide for chronic hemodialysis facilities providing a brief
overview of the principles of emergency management: Mitigation,
Preparedness, Response and Recovery. |
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| Requirements
for Approval of Transplant Centers |
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CMS hospital Requirements for the approval and re-approval of
transplant centers to perform organ transplants. |
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| Keep
Kidney Patients Safe |
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A website administered by the Renal Physicians Association and
the Forum of End Stage Renal Disease that serves as a resource
for nephrology professionals who are committed to achieving and
maintaining optimum levels of kidney patient safety. This website
provides information and best practices to prevent the occurrence
of the Five Adverse Patient Safety Events as identified by patient
and professional surveys and also assists nephrology professionals
in meeting the quality assessment and performance improvement
(QAPI) requirements outlined in the Centers for Medicare and Medicaid
Services (CMS) Conditions for Coverage for End Stage Renal Disease
Facilities. |
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| Be
Aware Be Safe Poster |
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A poster created by the Patient Advisory Committee (PAC) that
gives tips on awareness and safety on medications, access, diet
and advocacy. |
Do You Have a Concern?
(Network grievance notification card to hang in
facility)
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Spanish |
Maine |
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Massachusetts |
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New Hampshire |
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Rhode Island |
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Vermont |
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Conditions for Coverage
| Patient
Rights |
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A poster that states patients rights according to
the Conditions for Coverage. |
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| Patient
Responsibilities |
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A poster stating patient responsibilities, which were taken
from various sources and modified by the Network. One of the sources
the responsibilities originated from is the Conditions for Coverage
V464 (13). |
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| Checklist for Social Workers related to the Conditions for Coverage (CfC) |
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The establishment of the new ESRD Conditions for Coverage (CfC), published by the Center for Medicare and Medicaid Services (CMS), has expanded the role and function of every member of the dialysis Interdisciplinary Team (IDT). Due to the number of inquiries the Network has received, the development of this checklist was prepared to assist and give guidance to renal social workers regarding specific and shared roles in the management of patients receiving dialysis services. |
Coordination of Benefits
Timeline (2009-2013)
Decreasing Dialysis Patient-Provider
Conflict (DPC) Toolkit
The
DPC toolkit, which is funded by the Centers for Medicare & Medicaid
Services (CMS), is a coordinated, national effort by the ESRD community
about conflict in dialysis facilities. The toolkit provides resources
to understand, educate, and cope with conflict. Some of the goals
of DPC are to create safe dialysis facilities, to increase awareness
of conflict and improve skills to decrease conflict, to improve patient-staff
relationships, and to create common language to describe conflict.
The DPC toolkit, using the Conflict Model, follows these steps:
• Create a calm environment
• Openness in understanding others
• Need a Nonjudgmental approach
• Focus on the issue at hand
• Look for solutions
• Implement agreement
• Continue communication
• Take another look at the situation.
For more detailed information on DPC toolkit and the conflict model,
please see the DPC
brochure.
The DPC toolkit is important because it fosters an improved
patient-staff working relationship; it prevents escalation of conflict
to maintain a safe workplace and provides skills to intervene successfully
in a conflict. The toolkit also improves employee morale, and increases
employee and patient satisfaction with the dialysis experience.
Each unit, and each new unit, is sent a DPC toolkit.
To order a toolkit for your facility, please contact the Patient Services
Coordinator, Amber Borges, at 203-387-9332, aborges@nw1.esrd.net,
or fax the order
form to 203-389-9902. Thank you for doing your part to help in
decreasing patient provider conflict.
Immunizations
| Immunization Action Coalition |
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The Immunization Action Coalition (IAC) works to increase immunization rates and prevent disease by creating and distributing educational materials for health professionals and the public that enhance the delivery of safe and effective immunization services. The Coalition also facilitates communication about the safety, efficacy, and use of vaccines within the broad immunization community of patients, parents, health care organizations, and government health agencies. |
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| Guidelines for Vaccinating
Dialysis Patients and Patients with Chronic Kideny Disease |
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A summary of recommendations of the Advisory Committee on Immunization Practices (ACIP) |
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| Adult
Immunizations |
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The summary of information presented in this brochure
is intended for Medicare fee-for-service physicians, providers,
suppliers, and other health care professionals who furnish or
provide referrals for and/or file claims for the Medicare-covered
preventive benefits discussed in this brochure. |
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| Vaccine Information Statements (VISs) |
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Information sheets produced by the Centers for Disease Control and Prevention (CDC) that explain to vaccine recipients, their parents, or their legal representatives both the benefits and risks of a vaccine. |
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CDC recommends a yearly flu vaccination as the first and most important step in protecting against the flu. The U.S. 2010-2011 seasonal influenza vaccine will protect against an H3N2 virus, an influenza B virus, and the 2009 H1N1 virus that emerged last year to cause the first global pandemic in more than 40 years and resulted in substantial illness, hospitalizations and deaths. Seasonal 2010-11 vaccine has begun shipping from manufacturers and CDC recommends that everyone 6 months and older get a 2010-2011 flu vaccine for the upcoming season as vaccine is available.
| Vaccinations Recommended for Adults With Kidney Disease or a Kidney Transplant |
| Vaccines |
Post-Transplant |
Kidney Disease |
| Diphtheria-Tetanus (Dt) |
Recommended |
Recommended |
| Measles-Mumps-Rubella (MMR) |
Do not use |
Use if needed |
| Hepatitis B |
Use if needed |
Recommended |
| Hemophilus influenza type b (Hib) |
Recommended |
Use if needed |
| Pneumococcal |
Recommended |
Recommended |
| Meningococcal (meningitis) |
Use if needed |
Use if needed |
| Influenza (flu) |
Recommended |
Recommended |
| Chickenpox |
Do not use |
Recommended |
Health Reform
What Does Health Reform Do? |
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The Affordable Care Act was passed by Congress and signed into law by President Obama on March 23, 2010; the comprehensive health care reform has a number of changes that will affect you, your family and your friends. Clink on the link to find out more. |
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Pre-Existing Condition Insurance Plan |
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In March 2010, Congress passed and
President Obama signed the Affordable
Care Act—the new health care reform
law. The law creates a new program—
the Pre-Existing Condition Insurance
Plan—to make health coverage
available to you if you have been
denied health insurance by private
insurance companies because of a
pre-existing condition. Clink on the link to find out more. |
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Quick Facts on Health Reform |
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The Affordable Care Act was passed by Congress and signed into law by President Obama on March 23, 2010; the comprehensive health care reform has a number of changes that will affect you, your family and your friends. With the number of changes at both the federal and local levels, you may have a lot of questions about how these changes will affect you. Click on the link for a list of the most frequent questions regarding health reform. |
Kidney
Disease and Quality of Life (KDQOL)
In 1994 the Kidney Disease Quality of Life Working Group developed the KDQOL in
an attempt to understand the relationship between functional status and well-being in end
stage renal disease patients and the impact on outcomes measures.
According to the Center for Medicare and Medicaid Services (CMS) ESRD Conditions for Coverage (CfC) the interdisciplinary team (IDT) must provide necessary
monitoring and social work interventions based on assessment results. These including
counseling services and referrals for other social services, to assist the patient in
achieving and sustaining an appropriate psychosocial status as measured by a standard
mental and physical assessment tool chosen by the social worker. The tool must be used
at regular intervals, or more frequently on an as-needed basis.
While this regulation allows the social worker to choose a “standardized mental and physical assessment tool,” the tool selected by the National Quality Forum and the CMS CPMs for adult patients is the KDQOL-36 assessment survey. In the future, patients taking this assessment survey annually will need to be reported electronically to CMS. Facilities may choose to use the KDQOL-36 from the implementation date of these regulations in order to have more comparable data when the KDQOL-36 is mandated.
“At regular intervals” means that the assessment survey is administered to the patient by
the time of the first reassessment (i.e., within 4 months of initiating treatment), and repeated at least annually. Examples of an “as needed basis” would include repeat use of
the survey with the patient who has a significant life changing event (e.g., loss of spouse,
loss of job, recent move to a nursing home) or a change in health status.
The social worker must have a system for routine use of the assessment survey, evaluation of the results, and incorporation of the survey results into the development and
updating of the psychosocial portion of the Plan of Care (POC).
- Scoring: Also available for download are scoring programs including manuals, spreadsheet templates and samples. Arbor Research Collaborative for Health created a KDQOL table of average scores in May of 2008 using DOPPS3 initial prevalent cross-section data (approximately from 2006).
- Professional Exchange: A Web chat site, hosted by QualityMetric Inc. and International Quality of Life Assessment (IQOLA) Project, has been established to facilitate discussion among professionals regarding the use of SF tools in clinical trials.
- KDQOL COMPLETE™- Life Options has created - KDQOL-36 ONLINE - an online version of the short form designed as a learning tool for professionals.
Additional Resources:
Data can be easily scored and variables can be quantified along any number of variables. For more examples link to the following:
Medicare
Get Ready for Medicare Enrollment Periods, Including Some Changes
Medicare Rights Center
There are important changes to enrollment periods for the 2011 plan year and future plan years, according to Medicare Advantage and Prescription Drug Plan enrollment guidance released by the Centers for Medicare & Medicaid Services (CMS) at the end of August.
One significant change is the elimination in 2011 of the Open Enrollment Period (OEP), which in previous years began on January 1. Beginning in 2011, there will be a new Medicare Advantage Disenrollment Period (MADP) from January 1 to February 14 of each year. During the MADP, people may disenroll from a Medicare private health plan, also known as a Medicare Advantage plan, to Original Medicare. However, individuals are not permitted to switch to another private health plan, or from Original Medicare to a private health plan. People who disenroll from private health plans during the MADP will also be able to enroll in a stand-alone prescription drug plan.
For the 2011 plan year, the Annual Election Period for Medicare private health plans and the Annual Coordinated Election Period for Part D prescription drug plans, sometimes referred to as the Fall Open Enrollment Period, will run from November 15, 2010 to December 31, 2010. While this is the same timeframe as in previous years, beginning next year the fall election periods will take place earlier, from October 15, 2011 to December 7, 2011.
The guidance implements provisions in the Affordable Care Act (ACA).
View a timeline of Medicare enrollment periods
Read the Medicare Advantage enrollment guidance
Read the prescription drug plan enrollment guidance
| ESRD
Medicare Booklet |
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If you have permanent kidney failure, this official government
booklet explains the basics of Medicare, how Medicare helps pay
for kidney dialysis and kidney transplants, and where to get help. |
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| 2010
Prescription Drug and Health Plan Options |
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Enhanced online tools
make comparing Medicare's 2010 Prescription Drug and Health Plan
options easier. The Centers for Medicare & Medicaid Services
(CMS) announced that people with Medicare and family members can
begin to review their 2010 coverage options through Medicare's
improved online tools. |
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| 2010
Medicare Premiums, Deductibles, and Co-payments |
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Applies to Original Medicare Plan
(Medicare Fee-for-Service).
Co-payment: fixed dollar amount after annual deductible is met.
Coinsurance: % of Medicare approved amount after annual deductible
is met. |
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| 2010
QMB, SLMB, and QI Programs |
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The Qualified Medicare Beneficiary
(QMB), Specified Low-Income Medicare Beneficiary (SLMB) and Qualifying
Individual (QI) programs are federal Medicare Savings Programs
(MSPs) which help low income elders and younger Medicare beneficiaries
access Medicare benefits. |
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Changes
in the Law Starting January 2010 Make it Easier to Save on Medicare
Drug Plan Costs
En
Español |
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Beginning January 1, 2010, changes
in the law, under the Medicare Improvements for Patients and Providers
Act, will make it easier for some people to qualify for Extra
Help with their Medicare prescription drug plan costs. Click here
to see how in English and Spanish. Get some of your questions
about the new law answered here. |
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| Q&A
MIPPA |
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Questions & Answers for the Medicare
Improvements for Patients and Providers Act. |
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Medigap Changes in 2010 |
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- Q & A
- Coverage Gap Rebate
- Facts About Medicare and Kidney Transplantation
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Medicare Part B
Medicare Part D
Medicare Learning Network
Medicare Learning Network
(MLN) Catalog of Products -
April
2010 Edition |
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The April 2010
Edition of the Medicare Learning Network (MLN)
Catalog of Products is now available on the CMS website.
The MLN Products Catalog is an interactive downloadable document
that lists all Medicare Learning Network products by media format.
The catalog has been revised to provide new customer-friendly
links that are embedded within the document. All product titles
and the word "download" when selected, will link you
to the online version of the product. The word "hard copy"
when selected, will automatically link you to the MLN Product
Ordering page. To access the catalog, click on the link called
MLN Product Catalog. |
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| REVISED Rehabilitation
Therapy Information Resource for Medicare Fact Sheet (April
2010) |
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The revised Rehabilitation
Therapy Information Resource for Medicare Fact Sheet (April
2010) is now available to be downloaded from the Centers for Medicare
& Medicaid Services’ Medicare Learning Network on the
CMS website. This fact sheet provides guidance and resources related
to rehabilitation therapy services, coverage requirements, and
payment systems. |
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Treatment Options
Transplantation
| Transplantation
- Treatment Methods for Kidney Failure |
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National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) manual explaining
transplantation. |
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| Partnering
With Your
Transplant Team
En
Español |
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U.S. Department of Health and Human
Services, Health Resources and Services Administration (HRSA)
Patient Guide to Transplantation. |
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| Transplant
Living |
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A web site created by UNOS focusing
on before, during, and after the transplant process. Also has
a section on pediatric transplantation. |
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| American
Society of Transplantation (AST) |
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This site has educational brochures
available in both English and Spanish, as well as other information
regarding transplants. |
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| UNOS |
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United Network for Organ Sharing (UNOS)
has transplant data as well as educational info for both patients
and professionals. The Organ Center tracks and facilitates organ
transplantation 24 hours a day, and the UNOS website provides
a running tally of the number of waiting list candidates and transplants
performed in the United States at any given time. |
Locate Transplant Centers
Transplant Centers in New England
211
Information by State
Call 2-1-1 for help with food, housing, employment, health care, counseling and more. While services that are offered through 2-1-1 vary from community to community, 2-1-1 provides callers with information about and referrals to human services for every day needs and in times of crisis. For example, 2-1-1 can offer access to the following types of services:
- Basic Human Needs Resource: food banks, clothing, shelters, rent assistance, utility assistance.
- Physical and Mental Health Resources: medical information lines, crisis intervention services, support groups, counseling, drug and alcohol intervention, rehabilitation, health insurance programs, Medicaid and Medicare, maternal health, children’s health insurance programs.
- Employment Support: unemployment benefits, financial assistance, job training, transportation assistance, education programs.
- Support for Older Americans and Persons with Disabilities: home health care, adult day care, congregate meals, Meals on Wheels, respite care, transportation, and homemaker services.
- Support for Children, Youth and Families: Quality childcare, Success by 6, after school programs, Head Start, family resource centers, summer camps and recreation programs, mentoring, tutoring, protective services.
- Volunteer opportunities and donations.
Learn more about 2-1-1 services in your area by selecting the appropriate state below.
Connecticut - www.211ct.org
Maine - www.211maine.org
Massachusetts - www.mass211.org
New Hampshire - www.211nh.org
Rhode Island - www.211ri.org
Vermont - www.vermont211.org
Useful
Links
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The
ESRD Network of New England offers ESRD orientation and educational
materials at no cost to patients, patients' family members, pre-ESRD
patients and caregivers. Any educational item from the list below
can be downloaded and printed on most PCs. Many items can also be
requested singly or in larger quantity by 
