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by Robert Pear The New York Times Nov. 22, 2006
WASHINGTON, DC - A federal advisory panel says that long-term care for agingbaby boomers threatens to bankrupt Medicaid, and it recommends sweepingchanges to rein in costs, including greater use of managed care for the sickest Medicaid recipients.
The proposals set up a likely clash between the new Democratic Congress and the Bush administration, which has sent strong signals that it will seek big savings in Medicaid next year.
Panel members adopted the recommendations last week, by a vote of
11 to 1, and are drafting a report to be submitted next month to Michael O. Leavitt, the secretary of health and human services.
Mr. Leavitt created the panel in May 2005 and is receptive to many of its proposals.
The panel, known as the Medicaid Commission, said states should have more freedom to alter benefits and eligibility for the program, which serves more than 50 million low-income people.
Moreover, it said states should be allowed to enroll some of the sickest Medicaid recipients, including nursing home residents and people with disabilities, in managed care plans.
The panel said such plans "would provide a medical home and better
coordinated care" for people entitled to both Medicaid and Medicare. Care is often fragmented now because Medicaid pays nursing homes while Medicare is the primary payer for doctors and hospitals, and in many cases "clinical data is not shared," the panel said.
People enrolled simultaneously in the two programs account for 13 percent of Medicaid recipients, but more than 40 percent of Medicaid costs. Medicaid, which is financed jointly by the federal government and the states, covers two-thirds of the nation's 1.6 million nursing home residents.
"The anticipated costs for long-term care services in this country threaten the future sustainability of the Medicaid program," the panel warned. It recommended that the federal government and the states provide new tax incentives for people to buy private insurance covering the costs of long-term care, so they would not rely so much on Medicaid.
"Public policy should promote individual responsibility and planning for long-term care needs," said the panel, led by former Gov. Don Sundquist of Tennessee, a Republican.
More generally, the panel said states should be free "to consolidate or redefine eligibility categories" and should be given "greater flexibility to design Medicaid benefit packages."
The proposals drew a swift negative response from Democrats who will be responsible for Medicaid in the new Congress.
Representative John D. Dingell of Michigan, who is in line to become
chairman of the Energy and Commerce Committee, dismissed the panel as "a hand-picked commission stacked against working families."
Senator Max Baucus of Montana, the Democrat in line to lead the Finance Committee, said many of the proposals would make it more difficult for "the most vulnerable Americans" to get comprehensive care.
John C. Rother, policy director of AARP, the lobby for older Americans,
said, "In some states, flexibility means cutting benefits."
But Christina Pearson, a spokeswoman for Secretary Leavitt, said, "He
definitely supports more flexibility for states to meet the needs of
different population groups."
Grace-Marie Turner, a commission member, said, "People who rely on both Medicaid and Medicare are the most vulnerable beneficiaries, but in most cases, nobody is coordinating their care." Even if a state wants to place them in managed care, it may take months or years to get federal approval, said Mrs. Turner, who is president of the Galen Institute, a research center focusing on health policy.
The commission said states should be able to place all types of Medicaid recipients in managed care without getting "a waiver or any other form of federal approval." But, it said, individuals should be able to "opt out" of managed care.
Gwendolyn G. Gillenwater, a commission member who is policy director of the American Association of People with Disabilities, an advocacy group, voted against the report.
"People with disabilities have not had good experience with managed care," Ms. Gillenwater said. "We need federal protections and safeguards. People with disabilities should at least have a choice of two managed care plans. And what are your choices if you opt out of managed care? The alternatives are getting more and more limited."
The panel said Congress should rewrite the Medicaid law to encourage the use of home care and community services, instead of nursing homes and other institutions.
In an interview, Angus King, the former Maine governor who is the panel's vice chairman, said: "We need to reverse Medicaid's institutional bias. Community care that's what people want. It's better for beneficiaries. And it's less expensive."
The panel urged the Bush administration to study a novel idea:
increasing federal subsidies for low-income groups added to the Medicaid rolls, while scaling back subsidies for higher-income people added to the program. The panel said this would help achieve "Medicaid's core purpose," serving low-income people.
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For more Medicaid Commission issues, see:
http://www.aapd.com/News/commission/indexmedcomm.shtml
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State settles with advocacy group on services for people with disabilities State officials to ask lawmakers for money to reduce waiting lists for programs that provide at-home services. By Corrie MacLaggan AMERICAN-STATESMAN STAFF Wednesday, October 25, 2006 As part of a lawsuit settlement, state officials will ask for more money to stop the growth of waiting lists for state services for people with mental retardation and other disabilities and reduce the number of people on the lists 5 percent to 10 percent a year. Advocates say the settlement could lead to as many as 60,000 more people getting care at home or in group homes, rather than in institutions: those now on waiting lists plus those who are added to the lists in the next few years. "This is a real issue of civil rights for individuals with disabilities," said Geoffrey Courtney, general counsel for the Arc of Texas, which is an advocate for people with mental retardation and developmental disabilities. "It enables them to live where they want to live." But state Rep. Elliott Naishtat, D-Austin, a member of the House Human Services Committee and a supporter of reducing the waiting lists, said the settlement might not mean the issue is resolved. "I'm hopeful that the leadership in the Legislature will do the right thing, but I'm not convinced that it will happen," he said. If it doesn't, Naishtat said, he expects advocates to file another lawsuit. Ted Hughes, a spokesman for the Texas Health and Human Services Commission, said his agency has "long been concerned about the (waiting) lists as is evidenced by our ongoing efforts to reduce, and eventually eliminate, them." The settlement involves a 2002 lawsuit by the Arc of Texas that said the state violated federal law granting options to people with mental retardation and other disabilities to remain at home or in group homes. The lawsuit involved two programs that provide home-based nursing care, physical therapy, respite care and other services for people with disabilities. There were about 15,000 people on the waiting lists for those programs when the lawsuit was filed in 2002. There are now about 45,000. "This is an issue that could potentially bring tremendous benefit to thousands of families across the state," said Mike Bright, executive director of the Arc of Texas. "Families can have hope that the state of Texas is going to be responding to a critical need as a result of this settlement." But the people won't get the services if the Legislature, which convenes in January, doesn't approve $254.7 million in state dollars, which will be requested by the Health and Human Services Commission. Among the plaintiffs in the lawsuit was Jamie Travis, whose daughter, Christy, 27, has severe physical and mental disabilities and requires around-the-clock supervision. Travis, who lives in West Columbia, near Houston, spent nine years on a waiting list for the state program that provides the services. Now, she has a chance to take a break from full-time caregiving and volunteer at her other children's school. "It's been pretty awesome," said Travis, whose daughter is one of 12,000 Texans moving off of state waiting lists as part of a plan approved by legislators in 2005 that is not directly related to the lawsuit. But 85,000 elderly Texans and those with disabilities are still on waiting lists for programs that allow them to live at home or in group homes. The lawsuit aimed to reduce the waiting lists for two of the programs, both of which involved people with disabilities. Meanwhile, Travis appreciates having a caregiver for her daughter, who uses a wheelchair and does not walk or talk. She said her daughter, who is developmentally like a 6-month-old, could have received state services years ago if she had sent her to live in a state home for people with disabilities. That wasn't an option Travis would consider. "If we give up our children, they get all the services they need, but if we want to keep them . . . we get no services," Travis said. "All our families want is for our loved ones to live in our homes or in the community, but we need a little bit of assistance."
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Special Ed. Official Leads Data Collection Push
EDUCATION WEEK By Christina A. Samuels January 10, 2007 Washington Beginning next month, states will have to report to the federal government more information for their students with disabilities than they were ever required to do under previous incarnations of the federal special education law. The data-collection effort is not only a challenge for state officials, however. It's also one of the first major activities to be entirely overseen by Alexa E. Posny, who last April took over as the first full-time director of the Department of Education's office of special education programs since March 2005. Ms. Posny, herself a former state education official in Kansas, has gotten generally good marks from those in the field since she assumed the reins at the federal office, known by its acronym, OSEP. Supporters point to her knowledge base and what they say is her ability to make complicated subjects easier to understand. The data collection will test her organizational and diplomatic skills as well. States have never been required by the federal government to collect so much information on students with disabilities, and in such detail. Many states have had to retool their computer programs and devote employees specifically to the task. ("States Face a December Deadline to Submit Special Education Data," Nov. 9, 2005.) By around June, the Education Department will inform states whether they are moving quickly enough toward the goals they set out for themselves, and what sanctions they may face if they are not. "The annual performance plans-that is just all-consuming for our state directors of special education," said Bill East, the executive director of the National Association of State Directors of Special Education, based in Alexandria, Va. The department, he added, "is going to use the data to rank states, and that's a very high-stakes thing. That's a major challenge that Alexa has, in keeping the states happy." Ms. Posny is the best person to be in charge of the special education office as it guides the states through the process, Mr. East said, noting that she "has been on both sides of this thing." "It's a tough job, but if there's anyone who can do it, she can," he said. Ms. Posny, 54, joined OSEP at a time when federal education officials were well into the process of writing the final regulations for the 2004 reauthorization of the Individuals with Disabilities Education Act. After the regulations were published in August of last year, she was part of the effort to talk about the new rules directly with the state and local educators who would be in charge of carrying them out. At the time, she said the community-based public meetings were a specific effort to reach people outside the orbit of the Education Department. The sessions, along with a department Web site on the regulations, have been popular in the field. In Kansas, Ms. Posny's last position was as a deputy commissioner for learning services, and she also served for two years as the state director of special education. She was a special education teacher for 4� years, but much of her career was spent in administrative positions, helping other educators decipher special education law and Title I, the federal program that provides funding to schools with large numbers of poor students. 'New Door' According to Ms. Posny, those jobs taught her the importance of converting the sometimes impenetrable language of laws and regulations into concepts easier to grasp. "I learned that having to present to the state board [of education]," Ms. Posny said in a recent interview. "It was made up of lay people. If I couldn't explain things to them so they could understand, then I've lost the game before it even started." The ability to be clear to people is even more important when it comes to programs or regulations that may be controversial, she said. "When I do provide explanations, they may not like the answer I have, but I need to help them understand why it came up the way it did," Ms. Posny said. Those who worked with Ms. Posny in Kansas offer positive comments about her work there. "She's very down to earth and very concrete in the things she puts together for families," said Connie Zienkewicz, the executive director of Families Together Inc., a federally funded center for parent training and information, based in Wichita. Former Kansas Commissioner of Education Andy Tompkins, now a professor at the University of Kansas school of education, said in an e-mail message that Ms. Posny "knows the [special education] law and its regulations as well as anyone." Ms. Posny was on the short list to become the education commissioner in Kansas after Mr. Tompkins retired in July 2005, but was passed over when what was then a conservative majority on the state board selected a conservative policy analyst with no prior experience in education. Ms. Posny said she barely had time to feel disappointed; soon after the board made its decision, the federal Education Department came calling. "What [the board decision] did was open up a whole new door for me," she said. Priority Areas After Ms. Posny was offered the federal job, she worked a full week in Kansas and started work in Washington the following Monday. Waiting for her guidance were the IDEA regulations, as well as the comments on the proposed regulations that would govern the so-called "2 percent" assessments. The assessments, when in place, would allow 2 percent of all students-about 20 percent of students with disabilities-to take modified tests and still be counted as proficient in calculating adequate yearly progress as mandated under the federal No Child Left Behind Act. Ms. Posny said she knows her time in Washington may be limited. Like her boss, John H. Hager, the assistant secretary for special education programs and rehabilitative services, she is a political appointee, and the Bush administration has just two years remaining. Whatever her tenure at OSEP, Ms. Posny hopes to focus on what she considers four priority areas: early-intervention services, transition for students with disabilities once they leave high school, parent involvement, and a closer tie between special education and general education law. "I really do look at this as an opportunity," she said of her job. "And, who could ever be bored?"
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The Abortion Debate No One Wants To HavePrenatal testing is making your right to abort a disabled child more like "your duty" to abort a disabled child.
By Patricia E. Bauer
Tuesday, October 18, 2005; Page A25
SANTA MONICA, Calif. -- If it's unacceptable for William Bennett to link abortion even conversationally with a whole class of people (and, of course, it is), why then do we as a society view abortion as justified and unremarkable in the case of another class of people: children with disabilities?
I have struggled with this question almost since our daughter Margaret was born, since she opened her big blue eyes and we got our first inkling that there was a full-fledged person behind them.
Whenever I am out with Margaret, I'm conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion. I don't know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent.
Imagine. As Margaret bounces through life, especially out here in the land of the perfect body, I see the way people look at her: curious, surprised, sometimes wary, occasionally disapproving or alarmed. I know that most women of childbearing age that we may encounter have judged her and her cohort, and have found their lives to be not worth living.
To them, Margaret falls into the category of avoidable human suffering. At best, a tragic mistake. At worst, a living embodiment of the pro-life movement. Less than human. A drain on society. That someone I love is regarded this way is unspeakably painful to me.
This view is probably particularly pronounced here in blue-state California, but I keep finding it everywhere, from academia on down. At a dinner party not long ago, I was seated next to the director of an Ivy League ethics program. In answer to another guest's question, he said he believes that prospective parents have a moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability, because it was immoral to subject a child to the kind of suffering he or she would have to endure. (When I started to pipe up about our family's experience, he smiled politely and turned to the lady on his left.)
Margaret does not view her life as unremitting human suffering (although she is angry that I haven't bought her an iPod). She's consumed with more important things, like the performance of the Boston Red Sox in the playoffs and the dance she's going to this weekend. Oh sure, she wishes she could learn faster and had better math skills. So do I. But it doesn't ruin our day, much less our lives. It's the negative social attitudes that cause us to suffer.
Many young women, upon meeting us, have asked whether I had "the test." I interpret the question as a get-home-free card. If I say no, they figure, that means I'm a victim of circumstance, and therefore not implicitly repudiating the decision they may make to abort if they think there are disabilities involved. If yes, then it means I'm a right-wing antiabortion nut whose choices aren't relevant to their lives.
Either way, they win.
In ancient Greece, babies with disabilities were left out in the elements to die. We in America rely on prenatal genetic testing to make our selections in private, but the effect on society is the same.
Margaret's old pediatrician tells me that years ago he used to have a steady stream of patients with Down syndrome. Not anymore. Where did they go, I wonder. On the west side of L.A., they aren't being born anymore, he says.
The irony is that we live in a time when medical advances are profoundly changing what it means to live with disabilities. Years ago, people with Down syndrome often were housed in institutions. Many were in poor health, had limited self-care and social skills, couldn't read, and died young. It was thought that all their problems were unavoidable, caused by their genetic anomaly.
Now it seems clear that these people were limited at least as much by institutionalization, low expectations, lack of education and poor health care as by their DNA. Today people with Down syndrome are living much longer and healthier lives than they did even 20 years ago. Buoyed by the educational reforms of the past quarter-century, they are increasingly finishing high school, living more independently and holding jobs.
That's the rational pitch; here's the emotional one. Margaret is a person and a member of our family. She has my husband's eyes, my hair and my mother-in-law's sense of humor. We love and admire her because of who she is -- feisty and zesty and full of life -- not in spite of it. She enriches our lives. If we might not have chosen to welcome her into our family, given the choice, then that is a statement more about our ignorance than about her inherent worth.
What I don't understand is how we as a society can tacitly write off a whole group of people as having no value. I'd like to think that it's time to put that particular piece of baggage on the table and talk about it, but I'm not optimistic. People want what they want: a perfect baby, a perfect life. To which I say: Good luck. Or maybe, dream on.
And here's one more piece of un-discussable baggage: This question is a small but nonetheless significant part of what's driving the abortion discussion in this country. I have to think that there are many pro-choicers who, while paying obeisance to the rights of people with disabilities, want at the same time to preserve their right to ensure that no one with disabilities will be born into their own families. The abortion debate is not just about a woman's right to choose whether to have a baby; it's also about a woman's right to choose which baby she wants to have.
The writer is a former Post reporter and bureau chief. Her daughter, Margaret, is a student in the post-secondary program at the Riverview School in East Sandwich, Mass., from which Margaret received her high school diploma in 2004. She also takes classes at Cape Cod Community College.
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After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:
FOR IMMEDIATE RELEASE
Contact: David Tolleson
770/604-9500 January 23, 2007
ATLANTA - The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.
The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.
Among the concerns cited by the medical doctors comprising NDSC's Professional Advisory Committee:
The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in "at risk" pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.
Based on ACOG's figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.
All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual's wishes and not overtly or covertly pressure patients to undergo undesired screenings.
Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG's recommendations do not address this situation, nor how it will be corrected.
Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.
Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.
NDSC Executive Director David Tolleson notes that "Down syndrome is a serious diagnosis; however we have seen families thrive." "We empathize with obstetricians who fear 'wrongful life' lawsuits," Tolleson adds, "but the cure for that problem is tort reform, not preventing the births of a whole class of people."
Jeff Mattson, a man with Down syndrome, agrees: "People with Down syndrome want to live life to the fullest."
According to Tolleson, "the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child."
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Contact: Jon Colman
NDSS
(212) 763-4371
jcolman@ndss.org
National Down Syndrome Society Responds to American College of Obstetricians and Gynecologists' New Recommendations for Prenatal Testing
NEW YORK, February 14, 2007 The National Down Syndrome Society (NDSS), a nonprofit organization with more than 200 affiliates nationwide representing the more than 350,000 Americans with Down syndrome and their families, issued a resolution today in response to the American College of Obstetricians and Gynecologists' (ACOG) recent recommendations that all pregnant women, regardless of their age, should be offered screening for Down syndrome.
The resolution includes two call-to-action points:
Challenging and strongly encouraging health care professionals and organizations like ACOG to partner with NDSS and other Down syndrome organizations to ensure the wide-spread proliferation of balanced, accurate and up-to-date information to expectant parents; and
Urging health care professionals, policymakers, and the Down syndrome community to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.
"At NDSS, we have always had strong, collaborative relationships with health care professionals, particularly through our advisory boards and our program Changing Lives: Down Syndrome and the Health Care Professional," said Pam van der Lee, Chair of the NDSS Board of Directors. "In cooperation with other Down syndrome organizations, we hope to expand and enhance these partnerships going forward, while continuing to be a voice and advocate for the Down syndrome community."
Other Down syndrome organizations in the U.S. and internationally have issued statements in recent weeks about the ACOG recommendations. NDSS is committed to working with these groups to express our collective concerns about the new guidelines and address these pressing issues facing the Down syndrome community.
Following is the full text of the NDSS resolution on the American College of Obstetricians and Gynecologists recommendations regarding prenatal testing for Down syndrome:
Whereas, The National Down Syndrome Society (NDSS) is the nation's largest organization devoted to helping people with Down syndrome and their families,
Whereas, NDSS strives to assist people with Down syndrome and their families through national leadership in education, research and advocacy,
Whereas, the NDSS and its members value the lives and contribution of people with Down syndrome, as well as all people with disabilities, and affirms a vision of a diverse and inclusive society in which human rights are respected and differences are celebrated,
Whereas, the American College of Obstetricians and Gynecologists has recently recommended that all pregnant women be offered prenatal screening for Down syndrome,
Whereas studies have shown that the information given pregnant women about Down syndrome is frequently incomplete, and often neglects to recognize the rich and fulfilling lives that are possible for people with disabilities,
Whereas the Board of the National Down Syndrome Society challenges and strongly encourages health care professionals and organizations like ACOG to partner with NDSS and other Down syndrome organizations to ensure the wide-spread proliferation of balanced, accurate and up-to-date information to expectant parents,
Whereas a prenatal diagnosis of Down syndrome does not mean that the fetus should be terminated,
Be it resolved, therefore, that the Board of the National Down Syndrome Society urges health care professionals, policymakers, and the Down syndrome community to work together to ensure that expectant parents are not unduly influenced to undergo prenatal testing or to terminate a pregnancy after receiving a prenatal diagnosis of Down syndrome.
About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 200 affiliates nationwide representing the more than 350,000 Americans who have this genetic condition. NDSS is committed to supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more about NDSS, visit http://join.buddywalk.org/site/Ri=bt8wFR9pKXVX3Wwspb8crw...
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