National Kidney Foundation

1. What prompted the development of the NKF?

The National Kidney Foundation is a leader in preventing and treating kidney disease. We are the source for information and support for everyone who is touched by kidney disease. We focus on three major areas where we make the greatest impact on the health and lives of millions. They are awareness, prevention, and treatment. We seek to create a community of all affected by kidney disease, to reduce disparities in care, and to elevate kidney disease to the public health issue that it really is.

These efforts began in 1950 when, in an attempt to save her son's life, a dedicated mother named Ada Debold brought together a group of mothers and specialists to try to find a cure for pediatric nephrosis. That disease was cured and her efforts spawned a lifesaving national movement.

For those who do not know they are at risk, the National Kidney Foundation, also known as NKF, educates about the benefits of early intervention in saving health and lives. Those who already know they have kidney disease rely on us for information, support, and improved health.

Today, kidney disease rates are spiraling, due to a rise in the two leading risk factors: hypertension and diabetes. One in 3 Americans over the age of 20 is at risk for developing this disease. It is referred to as a silent killer because so often, it has no symptoms, but in fact it is one of the world's leading causes of death and most people do not even know they have it. Treatments are available to help slow the disease's progression when identified early, and screenings are simple and painless.

2. How might a family caregiver or helping professional use programs of the NFK?

Family members and caregivers benefit from our online and print educational brochures to learn more about their loved one's kidney disease. Additionally, we offer NKF Cares, a helpline that provides support, information, and resources to patients, families, and caregivers. You can reach NKF Cares and speak with a trained professional Monday through Friday 9 am to 5 pm Eastern Time by calling (855) 653-2273. Also, family members and caregivers often seek online support through our Facebook page or online forums.

In addition, they can participate in our Kidney Walks to help raise awareness about kidney disease and support their loved one. They may also participate in our Kidney Early Evaluation Programs (KEEP) throughout the country to help diagnose kidney disease early to prevent and slow the progression of the disease, especially if they have risk factors themselves.

3. What are key issues that are being addressed currently?

To address the growing public health problem of kidney disease, the NKF's major strategic goals include:


1. Raising public awareness of chronic kidney disease, also known as CKD, especially among those who are at risk
2. Educating primary care practitioners in addition to kidney specialists about detecting and treating early stage kidney disease.
3. And, advocating on behalf of patients.



4. Are there any future plans for the NKF and/or any of its programs?

During the NKF's early years, we focused our efforts on helping people whose kidneys had failed completely. Today, we're issuing a call to action for those who are in the at-risk groups as well as the 26 million, or 1 in 9 Americans who have CKD in its various stages. We are increasing their awareness of the problem and encouraging them to be tested so that they can save their kidneys before it is too late.

We will continue our NKF Cares Help Line, local Kidney Walks, and KEEP events. We hope to expand our volunteer base to allow more people to get involved. Also, we have a new program called Peers Lending Support which matches patient in need of support with peer mentors who have been through a similar situation with kidney disease. To learn more about our patient programs visit: http://www.kidney.org/patients/

We are committed to raising awareness about kidney disease in the general public. The first step is outreach to the risk groups to inform them that they are at risk and that they need to get their kidney function tested. This includes those with diabetes, hypertension or a family history of kidney disease, as well as African Americans, Hispanics and older Americans. When people at risk keep their diabetes and hypertension under control through diet, lifestyle, and medication, they may be able to prevent kidney failure. Our goal is to drive kidney disease into the national dialogue through comprehensive outreach.

5. Is there anything else you would like people to know?

NKF's work is helping doctors in local communities around the country identify kidney disease early, prevent complications and keep more people from needing dialysis treatment. Many people do not know how far of a reach we have developed.

In 2002, the NKF defined the stages of CKD and set up a classification system that changed the way the disease is identified and treated. Now we can find and treat kidney disease at a very early stage when there are positive steps to take to prevent the progression to kidney failure. Because of NKF, when you go to the doctor anywhere in the U.S. you get a standardized report with your GFR number. This is a measure of your kidney function and is also an indicator of how well your kidneys are doing their life-sustaining job of filtering out toxins. You get this information at a time when making lifestyle changes, such as controlling blood pressure and diabetes, along with diet and exercise, can make a difference in preventing kidney failure.

Through its kidney disease outcomes quality initiative, NKF established clinical practice guidelines to improve patient care across the spectrum of chronic kidney disease. The implementation of these guidelines has greatly facilitated communication among health care providers. It's also enhanced public awareness of and education about CKD and the need for its detection at the earliest stage. This effort has changed the way kidney care is practiced worldwide and it has improved the survival rates for dialysis patients.

6. If readers have other questions, how can they obtain more information?

Call 1(855) NKF-CARES {1(855)653-2273} and speak with a trained professional Monday–Friday 9 am-5 pm Eastern Time or email us at nkfcares@kidney.org Visit our website at www.kidney.org. Follow the organization on Facebook and Twitter. Headquarters: National Kidney Foundation, Inc., 30 East 33rd Street, New York, NY 10016.

April 28

A caregiving household may contain supplies, equipment and medications. Medications can be lifesavers for a loved one but can also be dangerous if they are misused. To reduce the risk of prescription drug abuse, the U.S. Drug Enforcement Administration will sponsor its fourth National Prescription Drug Take-Back Day on April 28.

Any unused prescription drugs can be dropped off at the designated collection site in a community. Sites will accept both prescription and nonprescription pills for disposal. For more information, visit the Department of Justice online.

May 30

The ARCH Webinar: Introduction to a Framework for Sustainability Planning for Lifespan Respite Grantees and their Partners will be held on Wednesday, May 30, 2012, 3:00 - 4:30 pm Eastern. The presenter will be Laura Martinez, Senior Program Associate, The Finance Project, Washington, DC. The goal of the webinar is to introduce . . .

. . . a comprehensive approach to sustainability planning for Lifespan Respite grantees and their partners. The interactive webinar will present a framework for sustainability planning that provides grantees with a process for working with their partners and other key leaders in the State to sustain Lifespan Respite programs. The 90 minute session is designed to help Lifespan Respite grantees launch effective and successful sustainability planning efforts by clarifying the concepts, people, steps and critical resources they need to have in place to get started. This includes a clear focus on:

The webinar is targeted to Lifespan Respite grantees and their partners, but the webinar would also be of interest to respite providers, community and faith-based organizations, area agencies on aging, and others interested in an introduction to funding sustainability concepts for respite services.

The Finance Project is a specialized non-profit research, consulting, technical assistance and training firm for public and private sector leaders nationwide. The Webinar will be presented by Laura Martinez, Senior Program Associate with the Finance Project. She holds a Master's of Public Policy degree from the University of Chicago and a Bachelor of Arts in Economics from the University of Arizona.

Webinar participation will be limited, so please register early at GoToMeeting.com

Recommended Changes to U.S.'s National Alzheimer's Plan Could Help Caregivers and Care Recipients

These recommendations stress the need to: address an imbalance in the use of funding, require more research about and implementation of psychosocial interventions, and give attention to co-occurring mental disorders often experienced by those with dementia and their caregivers. The recommendations were endorsed by a significant majority of the national experts on dementia and behavioral health. Read Friedman's complete article.

SSA Anounces Compassionate Allowances Program Changes

Launched in 2008 with a list of 50 diseases and conditions, the program is aimed at identifying medical diagnoses that clearly meet the statutory standard for disability. When individuals with those diagnoses apply for disability assistance, they receive fast-track review so that they are notified of the final decision within days. The 52 new Compassionate Allowances conditions, effective in August 2012, bring the total to 165. The list is posted on SSA's website. For more information, go to: http://rarediseases.org/

Getting to Know the Lifespan Respite Grantees and Stakeholders

Main Activities: Currently in their second year of funding they held quarterly meetings of the RCCCWA, two in Seattle and two in eastern parts of the state. The Girl Scouts of Western Washington, through the Fostering A Future Program, provide much needed respite for foster or kinship care providers while girls in kindergarten through grade 12 participated in troop meetings and activities, including camp.

In order to increase respite provider capacity, a requirement of state Lifespan Respite programs, the CCR&RN was charged with respite provider recruitment. A flyer was created for dissemination by the CCR&RN through newsletters and brochures to recruit child care providers who are willing to provide respite care for a pilot project.

In an effort to expand respite options for populations who do not qualify for existing respite programs, or for whom respite providers are especially difficult to find, such as family caregivers of individuals with MS, ALS or Parkinson's, a Volunteer Statewide Respite model was conceived. Catholic Community Services' Chore Services (VCS) provided outreach material on their website for client and volunteer recruitment for the new Volunteer Statewide Lifespan Respite Model. The new model builds on the existing Volunteer Chore Services model. Caregivers can request respite in addition to housework, yard work, laundry, transportation, shopping, etc. They have also expanded their client base to caregivers of children with special needs, providing supportive services so the parents and caregivers can better attend to their children's needs.

The VCS relationship with the National MS Society, Greater Washington Chapter, has led to the beginning of a relationship with the Northwest Parkinson's Foundation. As a result of these relationships, volunteer descriptions have been developed along with client referrals to the VCS pathway and to joint trainings, which are reflected on the respective web sites.

State Respite Coalition Role: The Respite and Crisis Care Coalition of Washington (RCCCWA) was launched in 2002 via a two-day conference funded by the state with broad statewide attendance. The coalition was initially funded by the Paul G. Allen Family Foundation and The Arc of King County. With this funding, a statewide needs survey was developed and implemented via the internet by the RCCCWA. Seven focus groups were held across the state in response to the needs survey. Results of the survey and focus groups provided information on underserved populations in the state. After the Paul Allen Grant ended, The Arc continued to offer part-time staff support. The Arc of King County currently houses the RCCCWA and the Lifespan Respite Coordinator, who oversees the State Lifespan Respite Program. The RCCCWA meets quarterly in person and tries to include organizations and individuals who represent various geographic regions of the state. One or two different family caregivers are invited to tell their caregiving experiences at each of the RCCCWA meetings. Membership and coalition building with incremental growth remain fairly solid. However further discussion on how to continue outreach to unrepresented groups is ongoing.

Aging and Disability Resource Center (ADRC) Role: The largest and most well established ADRC in the state, located in Pierce County, serves as a model for the other ADRCs statewide. It is a model being used to expand ADRCs across the state. The Pierce County ADRC is in the process of developing a webpage on Lifespan Respite and to collaborate with the Lifespan Respite Project to develop a toll free call in number for caregivers. ADRC staff plan to introduce Lifespan Respite through a variety of media outlets.

Key Contacts:
Hilari Hauptman, Project Director
Aging and Disability Service Administration
WA State Department of Social and Health Services
PO Box 45600
Olympia, WA 98504-5600
360-725-2556
Hilari.Hauptman@dshs.wa.gov

Linda Porter, Lifespan Respite Coordinator
Respite and Crisis Care Coalition of Washington
The Arc of King County
233 6th Avenue North
Seattle, WA 98109
206-829-7030
lporter@arcofkingcounty.org

Money Follows the Person: Funding for Home and Community-based Services

One major finding from this most recent evaluation field report involved the types of home and community-based services garnering the greatest expenditures of MFP recipients. The two categories of service which accounted for the largest percentage of these expenditures were: (1) home-based care, which includes personal assistance services, accounts for 44 percent of expenditures; and (2) round-the-clock residential services, such as 24-hour attendant care provided in group homes, account for 25 percent. The other categories of support reported on were: coordination and management; employment; day services; nursing; meals; mental and behavioral health services; health and therapeutic services; and caregiver support. Caregiver support was provided in 22 states, but accounted for only .4% of total MFP expenditures nationally. The most common caregiver supports were respite care—both in and out of the home—and caregiver training. See the full Mathematica Report from the Field (Number 9, February 2012), Post-Institutional Services of MFP Participants: Use and Costs of Community Services and Supports.

Community-Based Child Abuse and Neglect Prevention Programs and Lifespan Respite: What's the Connection?

Our first presentation to state lead agencies administering federal Community-Based Child Abuse Prevention Grants (CBCAP) was made last June at the Children's Bureau's Network for Action Meeting. We followed up with a webinar to CBCAP leads in September and have identified five state child abuse prevention agencies that are willing to work with ARCH to learn more about Lifespan Respite systems and to learn more about respite services and crisis nursery programs with the goal of engaging them as partners in state Lifespan Respite systems. ARCH reported on the success of this effort at the federally sponsored Network for Action meeting this month in collaboration with the 18th National Child Abuse Conference sponsored by the Children's Bureau. ARCH will also be presenting at the national conference itself on the importance of respite and crisis nurseries in preventing abuse and neglect and the roles that Lifespan Respite programs can play in this effort. For more information, see the ARCH page at the National Network for Action.

Colorado Respite Coalition Spearheads State Legislation for Respite

Championed by state legislators Barker in the House and Aguilar in the Senate, the bill has passed the House, been approved by two Senate committees and is awaiting final action in the Senate. Advocacy for the legislation has helped Easter Seals Colorado and other Colorado Respite Coalition member organizations working in unison for the cause of respite care, raise awareness statewide about the need for and the benefits of respite across the lifespan. No one is sure how much money will be raised by the imposition of these surcharges since this approach has not been taken before. Easter Seals Colorado estimates approximately $16,000 will be raised annually. "We recognize that HB 1226 will not respond fully to the overwhelming needs of families, but it does begin to address and help fund additional respite. With this beginning, we will continue our work of creating more capacity and finding more efficient ways to partner with our community thereby increasing respite options" - Lynn Robinson, President & CEO, Easter Seals Colorado.

For more information, email Ayesha Sharma at Easter Seals Colorado.

Still Time: Lifespan Respite Program Announcements from Administration on Aging (AoA)

• Grants to New States for Lifespan Respite Programs for eligible state agencies which did not receive funding under this program previously. Grants are for planning, establishing and expanding/enhancing Lifespan Respite Care systems in the states, including new and planned emergency respite services, training and recruiting respite workers and volunteers and assisting caregivers with gaining access to needed services. Funding Opportunity Number HHS-2012-AoA-LR-1203


• Building Integrated & Sustainable Lifespan Respite Care Programs for current Lifespan Respite Grantees who are one of 12 eligible state agencies which received funding in FY 2009. Grants are for bringing to scale and more fully integrating respite services across the lifespan with continued and measurable progress towards the realization of sustainable Lifespan Respite systems. Funding Opportunity Number HHS-2012-AoA-LI-1205.


• Expansion Grants for current state agencies which received Lifespan Respite Grants in FY 2010 or FY 2011. The primary focus of these one-year Competitive Expansion Supplement grants is the provision of respite services to eligible populations. In addition to using the funds to provide respite services, successful applicants may also use funds to further enhance activities begun during years one and/or two of their existing grants. Federal Opportunity Number HHS-2012-AoA-LR-1206

All questions regarding the content of these applications should be directed to:

Greg Link
Office of Home and Community-Based Services
Washington, D.C. 20201
Phone Number: 202-357-3545
E-mail: greg.link@aoa.hhs.gov