The ALS Awareness Ribbon and Lapel Pin was inspired by The Navy Pinstripe uniform worn by Yankee Lou Gehrig who died of ALS in 1941. |
NCAHB is a bipartisan coalition of approximately 14,000 individuals and 47 organizations founded by David Jayne working to amend a Medicare policy that requires beneficiaries with significant illness to remain homebound or lose vital medical homecare benefits. David Jayne's internet petition published on the internet January 25, 2001, summarizes NCAHB's Mission Statement. Senator Robert J. Dole, Honorary Chairman CNN Interview All are welcome -- please help us grow! NCAHB Endorsements from Organizations Subscribe to Ncahb1-subscribe@yahoogroups.com Get our updates on key legislation. (Archived NCAHB Headlines) Check the status legislation via Library of Congress. |
Contacting Your Congressional Rep. Media Coverage & Correspondance: Read the Article "Imprisoned by Medicare" by Senator Robert Dole in the Washington Post More Stories: |
NEWS Dear friends of NCAHB, Included in the Medicare prescription drug bill that was passed this morning was the homebound demonstration project. NCAHB will provide the specifics of the demonstration as they become available. It is a hope filled day for the severely disabled imprisoned by the Medicare homebound restriction. Below is the demonstration language from the legislation. Thank you very much for your support. SEC. 702. DEMONSTRATION PROJECT TO CLARIFY THE DEFINITION OF HOMEBOUND. (a) DEMONSTRATION PROJECT.Not later than 180 days after the date of the enactment of this Act, the Secretary shall conduct a 2-year demonstration project under part B of title XVIII of the Social Security Act under which medicare beneficiaries with chronic conditions described in subsection (b) are deemed to be homebound for purposes of receiving home health services under the medicare program. (b) MEDICARE BENEFICIARY DESCRIBED.For purposes of subsection (a), a medicare beneficiary is eligible to be deemed to be homebound, without regard to the purpose, frequency, or duration of absences from the home, if (1) the beneficiary has been certified by one physician as an individual who has a permanent and severe, disabling condition that is not expected to improve; (2) the beneficiary is dependent upon assistance from another individual with at least 3 out of the 5 activities of daily living for the rest of the beneficiary's life; (3) the beneficiary requires skilled nursing services for the rest of the beneficiary's life and the skilled nursing is more than medication management; (4) an attendant is required to visit the beneficiary on a daily basis to monitor and treat the beneficiary's medical condition or to assist the eneficiary with activities of daily living; (5) the beneficiary requires technological assistance or the assistance of another person to leave the home; and (6) the eneficiary does not regularly work in a paid position full-time or part-time outside the home. (c) DEMONSTRATION PROJECT SITES.The demonstration project established under this section shall be conducted in 3 States selected by the Secretary to represent the Northeast, Midwest, and Western regions of the United States. (d) LIMITATION ON NUMBER OF PARTICIPANTS.The aggregate number of such beneficiaries that may participate in the project may not exceed 15,000. (e) DATA.The Secretary shall collect such data on the demonstration project with respect to the provision of home health services to medicare beneficiaries that relates to quality of care, patient outcomes, and additional costs, if any, to the medicare program. (f) REPORT TO CONGRESS.Not later than 1 year after the date of the completion of the demonstration project under this section, the Secretary shall submit to Congress a report on the project using the data collected under subsection (e). The report shall include the following: (1) An examination of whether the provision of home health services to medicare beneficiaries under the project has had any of the following effects: (A) Has adversely affected the provision of home health services under the medicare program. (B) Has directly caused an increase of expenditures under the medicare program for the provision of such services that is directly attributable to such clarification. (2) The specific data evidencing the amount of any increase in expenditures that is directly attributable to the demonstration project (expressed both in absolute dollar terms and as a percentage) above expenditures that would otherwise have been incurred for home health services under the medicare program. (3) Specific recommendations to exempt permanently and severely disabled homebound beneficiaries from restric- tions on the length, frequency, and purpose of their absences from the home to qualify for home health services without incurring additional costs to the medicare program. (g) WAIVER AUTHORITY.The Secretary shall waive compliance with the requirements of title XVIII of the Social Security Act (42 U.S.C. 1395 et seq.) to such extent and for such period as the Secretary determines is necessary to conduct demonstration projects. (h) CONSTRUCTION.Nothing in this section shall be construed as waiving any applicable civil monetary penalty, criminal penalty, or other remedy available to the Secretary under title XI or title XVIII of the Social Security Act for acts prohibited under such titles, including penalties for false certifications for purposes of receipt of items or services under the medicare program. (i) AUTHORIZATION OF APPROPRIATIONS.Payments for the costs of carrying out the demonstration project under this section shall be made from the Federal Supplementary Medical Insurance Trust Fund under section 1841 of such Act (42 31 U.S.C. 1395t). (j) DEFINITIONS.In this section: (1) MEDICARE BENEFICIARY.The term ''medicare beneficiary'' means an individual who is enrolled under part B of title XVIII of the Social Security Act. (2) HOME HEALTH SERVICES.The term ''home health services'' has the meaning given such term in section 1861(m) of the Social Security Act (42 U.S.C. 1395x(m)). (3) ACTIVITIES OF DAILY LIVING DEFINED.The term ''activities of daily living'' means eating, toileting, transferring, bathing, and dressing. Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 DavidJayne@ncahb.org Friday, June27, 2003 Dear friends of NCAHB, A three year journey is drawing to a successful close. Late last night the homebound demonstration amendment was included in the Senate Medicare prescription drug bill S.1. Tremendous appreciation goes to Senator Susan Collins and Senator Bob Dole, NCAHB's honorary chairman. Solving impossible problems all day they truly put forth a heroic effort. Both bills will go to the Conference committee now. Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 DavidJayne@ncahb.org Wednesday, June 25, 2003 Dear friends of NCAHB, I am incredibly pleased to inform you that the homebound demonstration amendment was included in the final House Medicare prescription drug bill with two minor changes. The bill will be voted on by the full House tomorrow. Tomorrow Senator Susan Collins plans to offer the homebound demonstration amendment to their prescription drug bill on the floor of the Senate for a vote. I want to express my tremendous appreciation to Senator Bob Dole, NCAHB's honorary chairman, really worked the issue hard and also Chairman Billy Tauzin of the Energy & Commerce committee who went to bat for the amendment when debated in the Rules committee. When I lost my benefits and my story went public, I received an email from a severely disabled lady that did not attend her child's funeral because she was told she would be discharged. This success is for you. Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 DavidJayne@ncahb.org ++++++++++++++++++++++++++++++++++++++++++ June 23, 2003 Dear Friends of NCAHB, The House Rules Committee is the target now and they may finish producing a final House Medicare prescription drug bill by tomorrow. Here are the members on the committee. If anyone lives in these members' districts please call your Representative. The phone calls need to be made today (202-225-3121 - Capitol Hill Operator). The message is: accept section 704 (Demonstration Project to Clarify the Definition of Homebound), which was included in the House Energy and Commerce Committee's version of H.R. 2473. Rep. David Dreier (R-CA) - Chairman Rep. Porter Goss (R-FL) Rep. John Linder (R-GA) Rep. Deborah Pryce (R-OH) Rep. Lincoln Diaz-Balart (R-FL) Rep. Doc Hastings (R-WA) Rep. Sue Myrick (R-NC) Rep. Pete Sessions (R-TX) Rep. Thomas M. Reynolds (R-NY) Rep. Martin Frost (D-TX) - Ranking Member Rep. Louise Slaughter (R-NY) Rep. James McGovern (D-MA) Many thanks in advance. Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 DavidJayne@ncahb.org ------------------------------------------------------------ -------------------- FROM: djayne23@aol.com DATE: Mon, 23 Jun 2003 17:15:31 EDT SUBJECT: NCAHB update immediate action needed Dear friends of NCAHB, The House Rules Committee is the target now and they may finish producing a final House Medicare prescription drug bill by tomorrow. Here are the members on the committee. If anyone lives in these members' districts please call your Representative. The phone calls need to be made today (202-225-3121 - Capitol Hill Operator). The message is: accept section 704 -------------------------------------------------- June 20th, 2003 Dear friends of NCAHB, I'm happy to report that the Energy and Commerce Committee, after a flurry of negotiations back and forth with Congressman Markey's office last night, decided to accept the homebound demo amendment. The demo will run for 2 years, starting 6 months after the date the Medicare bill is enacted. During the 2 years, up to 15,000 individuals in three particular states will be eligible to apply for exemption from restrictions on the length, frequency and purpose of their departures from the home. The criteria that these individuals must meet are the same 4 specified in HR 1874. The HHS Secretary has the discretion to choose the states, but they must be geographically representative: one from the Northeast region, one from the Midwest region, one from the West region. At the end of 2 years, the Secretary will have one year to develop a report to Congress that: explains whether the demo directly increased costs or adversely affected Medicare patients; if costs went up, by how much and how can the language be refined to ensure that such an exception will not in the future increase costs. The committee refused to accept the automatic trigger that would have made the exemption permanent unless the HHS Secretary made the requisite certifications. Nevertheless, CMS finally will have to study AND produce the data about increasing freedoms for the permanently and severely disabled homebound beneficiaries. The battle is now just heating up. We have to ensure that the provision survives the Ways and Means committee and is included in the final reconciled version. On to the Senate!!! I want to express my tremendous appreciation to Representatives Ed Markey and Chris Smith and their staff especially Mark Bayer, also Senator Bob Dole NCAHB's honorary chairman a true American hero and his staff including Jennifer Butler, Kathy Thompson and Bob Wardwell with VNAA, Bob Williams and Henry Claypool with AIMMM, Eric Sokol with NAHC, all of the endorsing organizations, members of NCAHB Julie Scurich and Dave Whalen, all the others that have assisted. Last but certainly not least YOU! Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 DavidJayne@ncahb.org To unsubscribe from this group, send an email to: Ncahb1-unsubscribe@yahoogroups.com READ S 598 IN ITS ENTIRETY Dear Friends of NCAHB, Congressmen Ed Markey and Chris Smith introduced H.R. 1874 last week, which is a compromise homebound bill that attempts to address CBO's cost concerns by piloting a change in the homebound rule, which would give people with permanent and severe chronic disabilities an exception to the homebound restriction. This is like Senator Collins' bill (S. 598), only that H.R. 1874 would pilot the change rather than amending the existing Medicare home health statute (as would S. 598). If after three years, costs have not unreasonably increased due to the pilot, then the change to the homebound restriction would become a permanent statutory change. Calls your U.S. Representatives' health legislative assistants and ask them to help ensure that H.R. 1874 (the "David Jayne Homebound Reform Act") gets included in the House Ways and Means Medicare bill and the House Energy and Commerce Medicare bill. The votes will happen next week (as early as May 13) so it's important that you call right away! You can reach your Representatives' Washington, D.C., offices by calling the Capitol Hill Operator (202-225-3121) and ask to be transferred to your Representative's office. To email http://www.house.gov/ If your Representatives' health legislative assistants have any questions about this bill, please have them call Henry Claypool with AIMMM (202-429-6810) or Kathy Thompson with VNAA (202-737-3707). Please imagine yourself permanently and severely disabled, dealing with tremendous challenges just to get through the day and faced with a lifetime of home imprisonment to receive life sustaining home health services. This homebound legislation has a real chance of being included in the Medicare reform bill ONLY with your help. Please call and or email your Representative this week. Also, please forward this to at least five friends and to subscribe to the NCAHB listserver NCAHB1-subscribe@yahoogroups.com You will not receive good luck or good fortune, but you can feel good knowing you are righting a terrible wrong. Many thanks in advance. Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 DavidJayne@ncahb.org More Background The "homebound rule" was put in effect in the 1960s when home health care was viewed primarily as a post-acute care Medicare benefit. For example, a person discharged from the hospital for hip surgery is considered to be "confined to the home" because the trauma to the hip and post-surgery healing make leaving the home physically difficult and often medically contraindicated. Therefore, the person's physician prescribes home health care for post-surgery healing and/or rehabilitation until the person is able to access medical care outside the home. From 1965 through today, "confinement to the home" has been the proxy for determining the severity of a person's clinical and functional condition. When a person is considered "homebound" by a physician, Medicare will cover home health care until the person is no longer considered to be "homebound." During the past 37 years, access to home health care for individuals with long-term chronic illnesses and disabilities has increased and, accordingly, the Medicare home health benefit has evolved to serve beneficiaries with both post-acute and long-term care needs. As long as a person meets all of the following home health eligibility criteria: 1) the individual has a skilled care need (i.e. skilled nursing, physical therapy and/or speech therapy); 2) the individual is under a physician's plan of care, and 3) the individual is considered by the physician to be "confined to the home;" then home health care is covered by Medicare. However, while the Medicare home health benefit has evolved over 37 years to become a cost-effective alternative to institutional care, the "confined to the home" eligibility criterion has not kept pace with our times and is now punishing those who receive home health care over a long period of time. Individuals with severe long-term illnesses and disabilities who otherwise would be "confined to the home" if it were not for advanced technology (e.g., portable ventilators and intravenous feeding equipment) that allows them to survive outside the home, have become prisoners in their homes. Americans all across the nation, who paid into Medicare and now rely on it for their very lives, are serving life sentences in their homes. Like David Jayne who is dying of ALS - Lou Gehrig's disease, they know if they leave their home at almost anytime, they can lose their eligibility for Medicare home health services - their lifeline. S. 2848 is targeted to those individuals who inarguably by the severeness of their conditions would be "confined to their homes" for the rest of their lives if were not for technological and personal assistance and the provision of home health care that make it possible for them to leave their homes. For more information, please call Kathy Thompson at the Visiting Nurse Associations of America at 202-737-3707, ext. 114. ============================ RECENT PBS Newshour Coverage of NCAHB'S David Jayne FREEING THE HOMEBOUND by Susan Dentzer President Bush on Medicare's Homebound Policy: ''PRESIDENT GEORGE W. BUSH: Today Medicare recipients who are considered homebound may lose coverage if they go to a baseball game-- which, of course, I encourage them to do-- or meet with a friend or go to a family reunion. So today I announce we're clarifying Medicare policy. So people who are considered homebound can occasionally take part in their communities without fear of losing their benefits.'' from the PBS Newshour Coverage Update from David Jayne -- July, 26, 2002 Dear friends of NCAHB, I am very pleased to inform you that President Bush announced today during the ADA anniversary ceremony, a clarification of Medicare policy to ensure that people with severe disabilities considered "homebound" under Medicare home health requirements are able to leave their homes occasionally without the risk of losing their Medicare coverage. This is a good start, but we still need a legislative remedy. While in Washington I met with Tom Scully, the Administrator of the Center on Medicare and Medicaid Services, which is the federal agency responsible for overseeing the Medicare home health benefit. Mr. Scully said that he is extremely concerned that some Medicare beneficiaries are unjustly and wrongfully thrown off the home health benefit for so called "homebound violations." He said he has personally restored home health services to those who lost theirs due to an overly restrictive interpretation of the homebound rule. The CMS Administrator also asked for NCAHB's help in identifying Medicare beneficiaries who have had their home health services cut off because of an extremely harsh interpretation of the homebound restriction. If you or someone you know have been cut off home health for what you believe to have been a wrongful interpretation of the homebound rule, I urge you to contact me djayne23@aol.com Describe the circumstances surrounding why home health services were discontinued because of an alleged "homebound violation". Explain your disability or chronic illness and why you need to continue to get Medicare home health services. Include contact information (e mail, phone and mailing address) for yourself and the home health agency so that Mr. Scully's staff can follow up. Below is a press release from CMS on today's events. FOR IMMEDIATE RELEASE Contact: CMS Public Affairs Friday, July 26, 2002 (202) 690-6145 --------------------------------------------------------- MEDICARE ACTS TO PROTECT COVERAGE FOR HOMEBOUND BENEFICIARIES The Medicare program today took action that will provide reassurance to chronically disabled homebound Medicare beneficiaries that they can continue to receive home health care even if they leave their homes for special non-medical purposes. In new instructions, HHS' Centers for Medicare & Medicaid Services (CMS) directed home health agencies and the contractors that pay home health claims to be more flexible in determining if a severely disabled individual is qualified as homebound. The instructions make clear that chronically disabled individuals who otherwise qualify as homebound should not lose home health services because they leave their homes infrequently for short periods of time for special occasions, such as family reunions, graduations or funerals. In some instances, home health agencies and Medicare payment contractors have terminated home health benefits after a beneficiary attended a special event, even though the beneficiary otherwise continued to qualify as homebound. "We want to make sure that every person who is covered by Medicare is treated fairly and sensibly," HHS Secretary Tommy G. Thompson said. "These new instructions will help guarantee that chronically disabled Americans who need Medicare's home health benefits will not lose their coverage if they leave their homes for special family occasions." The new language in the program manual for home health agencies: Expands the list of examples used to illustrate occasional absences from the home and notes that the list is still not all inclusive; Adds the late stages of amyotrophic lateral sclerosis (ALS or Lou Gerhig's disease) or other neurodegenerative disabilities to the list of examples of conditions that may indicate that the patient cannot leave his or her home; and Makes it clear that the determination as to whether a person is homebound is one that must be made over a period of time, not on a daily or weekly basis, so a few special trips outside the home would not be used to disqualify a patient who has a normal inability to leave the home."While Congress weighs the homebound definition in current law, we have the responsibility to make sure that chronically disabled people who are considered to be homebound can live a full life," CMS Administrator Tom Scully said. "By adding these examples, we make it clear that disabled Medicare beneficiaries can take advantage of an opportunity to go to their child's wedding or other special family occasion without the fear of losing vital benefits." Under current law, to qualify as homebound, a Medicare beneficiary does not need to be bedridden, but must generally be confined to his or her home. If the patient does leave the home for non-medical purposes, these absences must be for short periods of time or infrequently. In 2000, Congress expanded the homebound definition to allow patients to attend adult day care programs or religious services. Medicare's $13 billion home health benefit provides short-term health and personal care services to beneficiaries who have a need for home health services and qualify as homebound. An estimated 2.5 million Medicare beneficiaries will receive home health services this year. Note: All HHS press releases, fact sheets and other press materials are available at www.hhs.gov/news. Honoring the Anniversary of the Americans with Disabilities Act Today's Presidential Action: In an East Room ceremony marking the 12th anniversary of the enactment of the Americans with Disabilities Act, President George W. Bush: Announced a clarification of Medicare policy to ensure that people with severe disabilities considered "homebound" under Medicare home health requirements are able to leave their homes occasionally without the risk of losing their Medicare coverage; and Called on Congress to fund his New Freedom Initiative budget requests, including $145 million for: (1) competitive grants to provide additional transportation services for Americans with disabilities, increasing their access to the job market; and (2) a pilot program to demonstrate innovative solutions for transportation problems that prevent many people with disabilities from living more independently. President Bush also praised the work of the Commission on Excellence in Special Education, which recently recommended improvements in the education of students with disabilities to Congress and the President. These recommendations will help Congress as it considers the reauthorization of the Individuals with Disabilities Education Act (IDEA). President Bush has made funding for special education a high priority. In each of the President's two budget requests, he has asked Congress for an additional $1 billion in IDEA Part B State Grants funding, the largest increases ever requested in history by any president. Background on Today's Presidential Action: On February 1, 2001, President Bush announced the New Freedom Initiative - a comprehensive program to promote the full participation of people with disabilities in all areas of society by increasing access to assistive and universally designed technologies, expanding educational and employment opportunities, and promoting increased access into daily community life. The Administration is committed to the full enforcement of the Americans with Disabilities Act. The ADA prohibits discrimination on the basis of disability in: Places of public accommodation, including all hotels, restaurants, retail stores, theaters, health care facilities, convention centers, parks, and places of recreation; Activities of state and local governments, including public transportation and employment; and Employment practices of private employers with 15 or more employees. The New Freedom Initiative also increases technical assistance to help small businesses comply with the ADA. The President believes that the most efficient way to promote compliance with the Act is to give businesses and local governments the information they need to better understand their obligations. Examples of the Administration's innovative efforts to promote compliance with the ADA include the Department of Justice's "ADA Business Connection," which is increasing compliance by fostering an ADA dialogue within the business community and increasing the flow of ADA information to business decision makers. Additionally, the Equal Employment Opportunity Commission is providing ADA training to small businesses throughout the country. For a full progress report on the implementation of the New Freedom Initiative, please visit http://www.whitehouse.gov/infocus/newfreedom/ For more information on the President's initiatives, please visit www.whitehouse.gov #### Best regards, David Jayne NCAHB Founder http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 djayne23@aol.com 06/27/02 Senator Dole Speaks Out in the Washington Post to Help David Jayne and other severely disabled homebound Americans Read the Article "Imprisoned by Medicare" in today's Washington Post Would you like to change your e-mail subscription to NCAHB? 06/26/02 We have received several thousand e-mails and have upgraded our e-mailing list to Ncahb1-subscribe@yahoogroups.com . To subscribe, please send an e-mail to this address! Existing subscribers do not need to re-subscribe. Thank you! Several new developments to be reported soon! VNA OF AMERICA ENDORSES NCAHB 46TH NATIONAL ORGANIZATION TO JOIN COALITION "Please add Visiting Nurse Associations of America as a supporting organization on the website. " Dear NCAHB Supporters: Last week I traveled to Washington DC to lobby for the passage of homebound legislation with other members of the National Coalition to Amend the Homebound Restriction. The week was very productive. We concentrated on the Senate side most of the week. We found champions in Senators Harkin and Kerry for the homebound effort. Senator Harkin is writing Secretary Thompson to secure accurate data in an attempt to get a reasonable CBO scoring. Senator Kerry as a member of the finance committee, said he will try to move the bill in committee. We worked with four lobbyist organizations. All four organizations felt the homebound legislation would be included in the Medicare bill later this year. Now more than ever, we need you to write your Senators in support of 2085 and your Representative in support of HR1490. For more information please visit the site below. Many thanks in advance. Best regards, David Jayne NCAHB Founder amendhomeboundpolicy http://www.amendhomeboundpolicy.homestead.com djayne23@aol.com ====================================================== David Jayne's Press Conference Speech in Washington DC May 16, 2002 Good afternoon. Thank you very much Senators, Representatives, staff, and distinguished guests for taking the time to be here today. I am extremely honored to have this opportunity to share my story. Before I begin, I need to express my tremendous gratitude to several individuals. Congressman Markey and Congressman Smith thank you for having the courage, to right a wrong in the Medicare system by introducing the home bound clarification act of 2001, HR 1490. I want to thank Senator Collins and Senator Cleland for introducing the Home Health Modernization act of 2002, Senate Bill 2085. I want to recognize the members of NCAHB. Without their enormous help, I would not be speaking with you today. Julie Scurich, David Whalen, Doctor David Hormick, also Bob Williams, Henry Claypool, and John Kemp of AIMMM I want to thank you for all of your time, and effort. Last, but certainly not least, Angelique, thank you very much, for all you have done. Also, I want to introduce to you, what gives me the burning desire, to live every day to the fullest and gives me the unstoppable determination to see the home bound restriction become a thing of the past. It is my precious children, Hannah and Hunter. 14 years ago, I was 27 years old, newly married, with a promising career ahead of me when I noticed a persistent twitch in my left arm. Several months later seated in a small examination room I heard the doctor say in a matter of fact way, "It is ALS, or you might know it as Lou Gehrig's disease." In total disbelief I asked, "How long?" Without hesitation the doctor said, "Three to five years. That was the beginning of an on going journey of many changes and challenges. As the years passed, and my body was consumed by ALS, I lost the ability to walk and this wheelchair replaced my legs. I lost the ability to eat and a feeding tube was placed in my stomach to provide nutrition. I lost the ability to speak and this computer replaced my voice. Finally, I lost the ability to take a life giving breath, so now this ventilator sustains life. This hideous disease, has progressed to the point that I can only move two fingers, and they are failing, turn my head, and slightly move my left knee. It requires two people, two hours to get me out of bed, showered, and dressed for the day. Because I require skilled nursing care to change my trach and feeding tube, Medicare has paid for a nurse to come to my home twice a month since 1997. Only because I need skilled nursing care do I qualify for a home health aide to assist with my morning routine. I don't think anyone can prepare for the devastating physical losses I have experienced, but I was completely blind sided by what I am about to recount. The fall of 2000, the Atlanta Journal and Constitution ran an article about my life and activities. Included in my activities, were accounts of my involvement in ALS fundraisers and giving speeches. Also, the article mentioned me going out of town with a college buddy to watch my beloved Georgia Bulldogs play the University of Florida. This was the first time in over three years I had left my home over night except hospital stays. The trip was difficult, but wonderful. I had not felt that alive in years. Everything went according to plan, except my Dogs, played like dogs. Three days after the running of the article which described my physical condition and the fact that it takes two people and two hours to begin my day, I was discharged by my home health company for homebound violations. Congressman Mac Collins came to my aid and services were restored pending an appeal. Yes, my services were restored but at the cost of being under house arrest again. For my trip to Washington, I have contacted the CEO of my home health company and informed him I was going to DC. I do not know my fate when I return. I was extremely fortunate that my situation played out on the front page of the newspaper. Since my story has gone public, I have received thousands of emails. Many of the individuals that contacted me shared similar experiences with Medicare's homebound restriction. Soon thereafter, I founded The National Coalition to amend the Medicare Homebound Restriction, and began a petition drive. We have collected over 17,000 hand written and online signatures from across the country. Last year, I had the wonderful pleasure of meeting Senator Dole. He is now our honorary chairman. We have documented many more cases of individuals that have experienced the severity of the homebound restriction. The stories are heart breaking. Two stories that left an indelible impression on me were of two different severely disabled women. Both had the terrible experience of having to bury a child. One lady chose to attend her child's funeral service and the other lady stayed home because she was informed she would be discharged. Sadly, the woman that attended her child's funeral, was discharged and lost her appeal. The other lady must live with the pain of not telling her loved one goodbye. I hardly think the intent of the homebound restriction was to be this cruel and vicious, but reality tells a much different tale. I would like to tell you my effort to amend the homebound restriction was a selfless effort, but it is not. I introduced to you to the two precious reasons why my effort is extremely personal. The Medicare homebound restriction is robbing me of the opportunity to be involved in Hannah and Hunter's childhood. I dearly want their memories to be of vacations and fun and not of their father confined to home. Before I required skilled nursing care, and subject to the homebound restriction, I would vacation with my family and take part in family outings. Since then my son always asks, "Is Dad going?" It pains me beyond imagination to look into his wanting eyes and tell him no. The homebound restriction is far more reaching than just the elderly community. And please do not think my situation is unique, it is not. Most battling chronic and terminal illness are overwhelmed by their daily effort to live much less have the energy to advocate change in the Medicare system. I am fortunate to be hard headed and stubborn enough to make my voice heard. I had no idea those character flaws would ever be positive attributes. I am not advocating the expansion of the Medicare system, and the language in HR 1490 and Senate Bill 2085, is not either. I am only asking the homebound restriction follow in the spirit of the ADA, the Olmstead Decision, Ticket to Work, and President Bush's, New Freedom Initiative Thirty two years ago when the homebound restriction went into effect, the technology for me to be in this room and speaking with you today did not exist. HR 1490, and Senate Bill 2085, will not convert the Medicare home health benefit from a short term, acute care benefit into a long term,chronic care benefit. The home health benefit will remain a short term benefit, because home health agencies will still have to show a finite end point for the care, and or improvement under the OASIS assessments. You might ask, if we eliminate the part of the homebound definition that refers to absences for short duration does that leave a definition that can be administered? The homebound restriction still would retain the requirement that leaving the home requires a considerable and taxing effort. The proposed modification would simply prevent patients with severedisabilities from facing the choice of being imprisoned in their homes or losing their Medicare coverage. "Beaking the Rules to Fix the Rules," by Bill Torpy THURSDAY - HOUSE-SENATE PRESS CONFERENCE MAY 16TH - JOIN US You are invited to Join David Jayne and the National Coalition to Amend the Medicare Homebound Restriction (NCAHB) at the U.S. Capitol for a joint House/Senate press conference on Thursday, May 16th @ 2 p.m. in Longworth Room 1539. "My ALS marches on and my three remaining functioning fingers that allow me to drive my chair and communicate are beginning to fail. I am months away from being entombed in a useless body by this disease. I will still be restricted by the homebound guidelines, a perfect example of the absurdity and punitive nature of this restriction." NCAHB Founder David Jayne, April 26, 2002 "The time is right for the media to grasp the meaning of these terribly restrictive policies." John Kemp, HalfthePlanet Foundation, April 27, 2002 Activities Planned During the Week of May 14 - 19: 1. Several new speakers to attend joint House-Senate Press Conference May 16th @ 2 p.m. Longworth Room 1539. Ms. Angelique Skoulas of Representative Markey's office has organized the House/Senate press conference to discuss House Bill H.R. 1490 and Senate Bill 2085. Sen. Collins sponsored S. 2085, a bill to improve the restrictions under SSA's homebound rule. Sen. Christopher S. Bond, Sen. Max Cleland, and Sen. Tim Hutchinson are co-sponsors. Senator Dole, NCAHB's Honorary Chairman has agreed to participate if he is available. 2. More Co-Sponsors Are Needed For Both Bills! 3. We hope Sen. Baucus, Sen. Grassley, Sen. Breaux, Sen. Cleland and Rep. Johnson will meet David Jayne to discuss how Medicare provides on-going services to its beneficiaries. 4. We are also trying to set up meetings with Secretary Thompson and Administrator Scully for meetings at HHS. 5. If you have any further ideas or would like to support us in any way especially during the DC trip, please drop us an email at NCAHB1@aol.com. Please join us! All are welcome! NCAHB Contacts: David Jayne NCAHB Founder amendhomeboundpolicy http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 djayne23@aol.com Julie Scurich, NCAHB Advocacy Coordinator NCAHB1@aol.com (831) 728-7764 04/12/02 Dear NCAHB Members: As you know, Senator Susan Collins sponsored S. 2085, a bill to improve the restrictions under SSA's homebound rule. Sen. Christopher S. Bond, Sen. Max Cleland, and Sen. Tim Hutchinson are co-sponsors.On 4/10/2002 it was read twice and referred to the Committee on Finance. Please help us gain more support for this bill. Please send your letters of support today. We appreciate every one's efforts! Please also read an excerpt from the Congressional Record below. David Jayne Founder, NCAHB RECENT CONGRESSIONAL RECORD SENATE TESTIMONY By Ms. COLLINS (for herself, Mr. CLELAND, Mr. BOND, and Mr. HUTCHINSON): S. 2085. A bill to amend title XVIII of the Social Security Act to clarify the definition of homebound with respect to home health services under the medicare program; to the Committee on Finance. Ms. COLLINS. Mr. President, I am pleased to introduce today legislation that is cosponsored by Senators CLELAND, BOND, and HUTCHINSON, that would modernize the current outdated homebound requirement that has im-peded access to needed home health care services for far too many of our Nation's frail, elderly, and disabled Medicare beneficiaries. I thank former Senator Bob Dole, one of our Nation's leading advocates, on behalf of individ-uals with disabilities, for bringing this issue to my attention. The highly skilled and often tech-nically complex care that our home health care agencies provide has en-abled millions of our most vulnerable older and disabled citizens to receive health care just where they want to be: in the security, comfort, and privacy of their own homes. Under current law, a Medicare pa-tient must be considered homebound to be eligible for home health services. While an individual is not actually re-quired to be bedridden in order to qual-ify, his or her condition must be such that ''there exists a normal inability to leave home.'' Moreover, leaving home must require ''a considerable and tax-ing effort by the individual.'' The law does allow for absences from the home of ''infrequent'' or ''relatively short du-ration. '' Unfortunately, the law does not de-fine precisely what this means. It leaves it to the fiscal intermediaries to interpret just how many absences qual-ify as ''frequent'' and just how short these absences must be. The result is that interpretations of the law vary widely from region to region. As a con-sequence, there have been far too many instances where an overzealous or arbi-trary interpretation of the definition has turned elderly or disabled Medicare beneficiaries who are dependent on Medicare home health services and medical equipment into virtual pris-oners in their own homes. We have heard disturbing accounts of individ-uals on Medicare who have had their home health care benefits terminated for leaving their homes briefly to visit a hospitalized spouse or to attend a major family gathering, including in one case, to attend the funeral of their own child. Another mother did not attend the funeral of her own child out of fear that by doing so, she would jeopardize her home health benefits. This does not make sense, and it is just cruel. The current homebound requirement is particularly hard on younger, dis-abled Medicare patients. For example, People magazine reported a story last year about a Georgia resident, David Jayne, a 40-year-old man with Lou Gehrig's disease, who was confined to a wheelchair and could not swallow, speak, or even breathe on his own. Ob-viously, he needed skilled nursing vis-its several times per week in order for him to remain at home and not at an inpatient facility. Despite his disability, however, Mr. Jayne meets frequently with youth and church groups. He is an inspirational person. He speaks using a computerized voice synthesizer and gives inspira-tional talks about how the human spir-it can endure and even overcome great hardship. The Atlantic Journal Constitution ran a feature article on Mr. Jayne and his activities, including a report about how he had, with great effort and help from his family and friends, attended a football game to root for the Univer-sity of Georgia Bulldogs. A few days later, unbelievably, at the direction of the fiscal intermediary, his home health agencywhich had been sending a home health nurse to his home for 2 hours, 4 mornings a week notified him that he was no longer con-sidered homebound and terminated his benefits. His benefits were subse-quently reinstated due to the enormous amount of media attention to this case, but this experience motivated him to launch a crusade to modernize the homebound definition and led him to found the National Coalition to Amend the Medicare Homebound Re-striction.... 03/18/02 Spinal Cord Injury Network Endorses NCAHB 45th Organizational Endorsement! ----- Original Message ----- From: Lennice Ambrose To: NCAHB1@aol.com Sent: Monday, March 18, 2002 8:52 PM Subject: Joining Spinal Cord Injury Network International Please add the Spinal Cord Injury Network Intl as a national supporter to amend the Medicare homebound restrictions. Lennice Ambrose, Founder/Director 800/548-2673 (Telephone) 707/577-0605 (FAX) spinal@sonic.net Thank you for ALL the hours you have worked. Gratefully, Lennice 03/07/02 Dear NCAHB Supporters, Your help is needed urgently. We need all individuals who are subject to the homebound restriction to share their stories with us at NCAHB ASAP. People in Maine area are especially needed to help us support U.S. Sen Collins legislative efforts. We're gearing up our efforts, bringing our NCAHB campaign to Washington, DC in the Spring - if you're in the DC area and have a homebound story to share we need to hear from you. Please help us make progress. We need your support. Send us your stories. Join NCAHB today. Sincerely, David Jayne NCAHB Founder (end of message) 02/22/02 Dear friends of NCAHB, Great news, Senator Susan Collins of Maine, has gladly agreed to introduce a companion bill to HR1490, The Homebound Clarification Act. We will keep you posted when the bill is introduced. We are working to arrange a news conference and possibly a Senate briefing and another House briefing. We need your immediate action to eliminate the additional cut in the Medicare home health benefit currently scheduled for October 1 of this year. This cut has no adjustment for more costly or more vulnerable patients and therefore will fall heaviest on the most costly patients (those who suffer from chronic illness more serious illness as well as those in rural areas). We urge you to coordinate within the disability community a phone, letter and email campaign to put political pressure on the White House to eliminate this cut. It must be done soon because the White House is preparing a letter now to Chairmen Thomas and Johnson listing the Medicare relief they believe should be provided this year. Please contact your representatives and senators and ask them to do the same. While broader coverage under the homebound definition is extremely important, it could be rendered meaningless if the covered services are not funded. This is what Congress did in the balanced budget amendment '97. That has resulted in 900,000 beneficiaries being eliminated from the home health benefit with the greatest drop being among the highest utilizers (the most chronically and seriously ill) and rural patients. Thank you for your continued efforts and support. Best regards, David Jayne NCAHB Founder amendhomeboundpolicy http://www.amendhomeboundpolicy.homestead.com 115 Hayes Circle Rex, Georgia 30273 770-474-1105 djayne23@aol.com 7/18 "Hostages of Home Care: Medicare Rule Confines Disabled" (by Barry Corbet, Denver Post, Sunday, July 15, 2001) Special thanks to Barry Corbet for his wonderful article! "HR 1490 will help many, injure no one, and deserves the support of all Americans. Please sign the petition on David Jayne's website and urge your congressional delegation to support the bill. If HR 1490 passes, it will end Medicare's outworn dictum that people who need home care to be mobile must be barred from an active life. " Barry Corbet is the former editor of New Mobility (www.newmobility.com) -- New Mobility has endorsed NCAHB!! For earlier NCAHB Headlines Click Here. ================================== A special heartfelt thank you to all the people from across America and other countries who took the time to sign my petition and support me! David Jayne, NCAHB Founder NOTICE & DISCLAIMER Organizational and individual endorsements of the NCAHB petition are limited to the contents and views set forth in the petition to President Bush as expressly stated therein. Viewpoints and comments expressed outside the scope of the petition should be attributed to the individual author or their respective organization and are provided for informational purposes. |
Contacting Your Congressional Rep. Media Coverage & Correspondance: Read the Article "Imprisoned by Medicare" by Senator Robert Dole in the Washington Post More Stories: |
The National Coalition to Amend the Medicare Homebound Restriction for Americans with Significant Illness (NCAHB) |
NCAHB is a bipartisan coalition of approximately 14,000 individuals and 47 organizations founded by David Jayne working to amend a Medicare policy that requires beneficiaries with significant illness to remain homebound or lose vital medical homecare benefits. David Jayne's internet petition published on the internet January 25, 2001, summarizes NCAHB's Mission Statement. Senator Robert J. Dole, Honorary Chairman CNN Interview All are welcome -- please help us grow! NCAHB Endorsements from Organizations Subscribe to Ncahb1-subscribe@yahoogroups.com Get our updates on key legislation. (Archived NCAHB Headlines) Check the status legislation via Library of Congress. |
The ALS Awareness Ribbon and Lapel Pin was inspired by The Navy Pinstripe uniform worn by Yankee Lou Gehrig who died of ALS in 1941. |
David Jayne and Family |
Key Sponsor - Rep. Markey. |
David's Rep. Mac Collins Speaking in Support of David and Key Legislation |
David asking Vermont Senator James Jeffords for support |
