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National Council on Independent Living |
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Not Just Responding To Change, But Leading It! |
NCIL Urging All Disability Advocates to Act Immediately! The Time Is Now to Include Long-Term Care in Healthcare Reform Legislation! June 18, 2009 Call Your Senators This Week – our chance to make a difference is slipping away! For the last few months, NCIL has been working long hours to stay up on the events, questions and dialogue surrounding the healthcare reform debate. NCIL has been busy educating its members and members of Congress about the importance of including Long-Term Care Reforms in the Health Care Reform legislation. All of this effort has led us to this dramatic moment in the history of our Movement to free our brothers and sisters and bring equality and access to all people with disabilities! The Finance Committee and the Health Education, Labor and Pensions (HELP) Committees are the two Committees in the Senate who have jurisdiction and responsibility to draft and approve a piece of legislation that will overhaul our nation’s healthcare system. The House of Representatives has three Committees that hold the same responsibility, but for now we are focusing on the Senate. It is this opportunity that NCIL feels may be our only chance in the next several years to seriously address the institutional bias in Medicaid, create long-term care insurance that doesn’t require people to be or become impoverished, eliminate the unfair 2-year wait period for Medicare, and ensure access to medical and diagnostic equipment in medical offices along with the cultural competency of medical and dental professionals. NCIL strongly believes that the political and financial costs of overhauling our healthcare system will leave little or no ability for the Federal Government to take on our priorities after this process is complete. In addition to that belief, NCIL is adamant that reforming our healthcare system is not complete unless we address the problems and inequities that exist for people with disabilities in the current healthcare and long-term care systems. That is why we need all of you, throughout the nation, to get on the phone, send an e-mail or fax, and make our message loud and clear! What has been done so far? The Finance and HELP Committees have both released preliminary drafts of their legislation, but have not yet released final drafts. The Senate HELP Committee included the CLASS Act in their version, as well as language from the Promoting Wellness for People with Disabilities Act. This is a great start, but does not mean that the language will stay in the final draft, or end up in the final version sent to the floor of the Senate for debate and a vote! The Finance Committee released a draft at the end of May, and they included two proposals for completely eliminating the two-year wait for Medicare. NCIL was vocal in support of those proposals, but Senators need to hear from constituents. What was missing from the Senate Finance draft was language to end the institutional bias in Medicaid, which is found in the Community Choice Act (CCA). This is not acceptable, and we must all tell this to the Senate. We need to tell our Senators that our priorities need to be a part of the reform! What is the Message? This is very simple. We need every Senator, especially those Senators who serve on the Senate Finance and HELP committees to know the following: Any healthcare reform legislation must include the language of the Community Choice Act, the CLASS Act, the Promoting Wellness for People with Disabilities Act and language that will end the two-year wait for Medicare. Healthcare reform is not truly reform for millions of Americans if these priorities are not included! What do I do? Contact your Senator THIS WEEK. We are not kidding about this. Both Committees are drafting and marking up their own pieces of legislation right now. Once both Committees have final drafts, they will work on creating a compromised version to be sent to the entire Senate, where it will likely face amendments, and ultimately a vote. It is MUCH EASIER to get your priorities into the legislation at this point in the process, than fighting for an amendment or another method after the official bill has been introduced. Spread the Message: Contact the Media! We also strongly encourage you to reach out to as many people in your region as possible with our message – our time is now! If you’d like to reach the media with your thoughts, five sample letters to the editor are included below. Special thanks to the staff of the Center for Disability Rights in Rochester New York for creating these sample letters and for their incredible dedication to the Movement! I need more information!
If you have questions about healthcare reform, our message, or just not sure what’s happening here, please contact Jason Beloungy, NCIL Healthcare Policy Analyst, at 202-207-0334 (toll-free 1-877-525-3400), ext: 1008, or e-mail Jason at: jason@ncil.org.
**Sample Letter to the Editor 1**
[Date] Dear Editor: What do you do if you find yourself in need of long term care? Most people do not know about their options and others have no options at all. My [relative] was a picture of health and then at [age] she was diagnosed with [condition]. S/he was whisked into an ambulance and soon admitted into a nursing home. Her physician said it would be best for him/her to be in a nursing home in order to get his/her [diabetes or other condition] under control. I called my [relative] in the nursing facility to ask him/her why s/he didn’t attend training classes in her community on [diabetes or other condition] management so she could remain in her home. She told me that she did not know that she had that option. The Administration is focusing on health care reform and it is absolutely critical for reform to include options for long term care. The Community Choice Act (CCA) (HR 1670 / S 683) gives people choice in long term care options by reforming Medicaid to end the institutional bias. CCA allows individuals eligible for services in a facility the opportunity to choose instead community-based attendant services and supports. For my [relative], for you, for me—we need to pass the Community Choice Act now! Sincerely,
**Sample Letter to the Editor 2** [Date] Dear Editor: I’ve lived in [number] different states – [list states] – and no two are alike when it comes to long term care services. If you have an injury, condition or illness that makes you unable to do everyday things like bathe or dress or do laundry by yourself, then you might be able to get help at home or you might wind up in a nursing home. It all depends on state regulations, insurance and what your health care provider says and does. If you wind up in a nursing home against your will, and your stay is paid for by Medicaid (most nursing home residents are on Medicaid after a couple months), then that’s a violation of your civil rights. The U.S. Supreme Court said so on June 22, 1999 in the Olmstead decision. But I’ve seen older and disabled people unwillingly stuck in nursing homes and other institutions in all five of these states. As the tenth anniversary of the Olmstead ruling approaches, Congress and the White House could finally start the process of implementing the civil rights of seniors and people with disabilities by passing the Community Choice Act (HR 1670 / S 683) as part of health care reform. So far, few policy makers are listening, but two million Americans should not have to wait for the right to liberty any longer. Sincerely,
**Sample Letter to the Editor 3** [Date] Our nation’s leaders are making a crucial mistake in their efforts to reform health care in the United States – leaving out long term services and supports. Long term services and supports, including in-home services and nursing facilities and other institutions, are a large portion of our nation’s health expenditures, yet the White House and Congressional leaders are resisting pushes for reform. Nursing facilities are an expensive and outmoded means of providing needed assistance to seniors and younger people with disabilities. Not only do incredibly few people actually want to live in nursing facilities, but states could actually save money of they enabled people to have the supports needed to live at home. [INSERT story about a loved one that struggled to maintain in the community] The sad thing is that it doesn’t have to be like this. Advocates in the disability community have been pushing for options for years. In particular, legislation called the Community Choice Act (HR 1670 / S 683) would eliminate the current institutional bias that forces people into expensive facilities, rather than providing services at home. June 22, 2009, will mark the 10th anniversary of the US Supreme Court’s Olmstead decision. In this landmark ruling, the Supreme Court affirmed that people with disabilities have the right to live in the most integrated setting. States cannot opt to institutionalize people for convenience or for basic financial reasons. Services must be provided in the most integrated setting – basically, the person’s home and local community. It has been ten years since Olmstead, but not enough has changed. Health care reform is the perfect vehicle to end the institutional bias and pass the Community Choice Act, but the White House and leaders in the Senate and Congress are ignoring the pleas of hundreds of thousands of people who are in nursing facilities and don’t want to be. Bureaucrats in DC are indicating that they will work on this issue next time, but people cannot wait. In the words of Martin Luther King, Jr., “‘Wait’ has almost always meant ‘Never.’” Now is the time to let seniors and people with disabilities decide where and how they want to live. Now is the time to save tax money by ending our dependence on costly institutions. Now is the time to pass the Community Choice Act! Sincerely,
**Sample Letter to the Editor 4** [Date] Dear Editor: In [month, year], my [relative or friend], [first name], had [type of medical incident, condition, injury]. When he recovered, he was placed in a nursing home. For [how long], [first name] languished in conditions so filthy that [specify harm to person if applicable]. Then, s/he learned that with services and supports, s/he could return home. This occurred [before/after] a landmark Supreme Court decision was handed down in 1999. The Olmstead decision states that “unnecessary institutionalization is discrimination”. Unfortunately, as the tenth anniversary approaches, many states still have no real Olmstead plan to transition people with disabilities back into the community. [First name]’s placement was the result of the bias inherent in our long-term care system. By law, states must offer nursing home care, while home care is merely optional. During budgetary crises, optional services are among the first items cut. The Community Choice Act (H.R. 1670, S. 683) addresses this bias by mandating home care, thus providing real choice to people with disabilities and seniors. It must be included in the health reform bill being crafted, which has no provisions for long-term services and supports. [First name] would have agreed that health reform without this crucial element is not reform. [Where is person now, how long in facility], [his/her] life stolen due to biases in our long-term health care system. Sincerely, **Sample Letter to the Editor 5** [Date] Dear Editor: Many Deaf and Hard of hearing people, who are either born with no hearing or are late deafened, face barriers of communication in nursing homes. Staff do not know sign language. People prefer to stay at home where the environment is designed for them to enjoy, and in the community where other deaf people live. [May insert example of a deaf person you know who needs long term care services.] They also want senior service providers who know sign language, or their preferred communication, to help them get around and visit their friends and feel safe going back home. Not someone who basically sits with them and talks with their pagers, but someone to play games with them and tell them stories of their life in sign language. They want to know that the person understands them. The Community Choice Act (HR 1670 / S 683), now pending before Congress, would give deaf and hard of hearing people (and all seniors and disabled people) choices about the place they live and services to meet the needs in their life, and not be isolated in nursing homes. In their last years, do not let deaf people die feeling lonely, but rather knowing they had communication and love. Sincerely,
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