1) What’s Happening in the Nation’s Capital?
Senate Votes to Debate Healthcare, NCIL Priorities Hang Tight
2) National News
Mikulski Introduces Rosa's Law: “What You Call People is How You Treat Them.”
Flowers for Algernon: Parents Wary of “Cure” for People with Down Syndrome; Scientists Persist
Google and YouTube Announce Automatic Captions!
Action Alert: Support the Campaign to Fund the National Housing Trust Fund
3) State News
Investigation Begins on Death at Infamous Pennsylvania Facility
4) Announcements and Additional Resources
Senate HELP Committee Holds Hearing on EEOC Commissioner
CMS Withdraws Medicaid Rehabilitative Services Proposed Rule
CMS Releases State Medicaid Director Letter on Medicaid Self-Directed Personal Assistance Services
Senate Votes to Debate Healthcare, NCIL Priorities Hang Tight
Last week, the Senate released its version of healthcare reform legislation, the Patient Protection and Affordable Care Act (HR 3590), after much anticipation. Senate Majority Leader Harry Reid (D-NV) released the bill after the Congressional Budget Office announced its cost to be $848 Billion dollars over ten years. Important updates include:
- The CLASS Act, an initiative to create a national voluntary long-term care insurance program and one of NCIL’s top priorities, was included in the bill. NCIL is pleased with this and other provisions that benefit people with disabilities, but some Senators are working to strip the CLASS Act from the bill because of pressure from the long-term care and life insurance industry. The only way it can become law is if we keep the pressure on!
- The CFC Option was not only included in the Senate legislation, but significantly strengthened! Originally, it contained a five-year sunset provision, meaning it would automatically end after 5 years unless Congress voted to extend it. The sunset provision has been removed. In Committee, the CFC Option start date was proposed to be 2014, a nearly 5-year wait for any state to begin to allow people in Medicaid the opportunity to choose home and community based services. The proposed start date has been changed to 2010!
Reid felt compromises in the bill would garner enough support to move the bill through the Senate, where there are procedures that can make the legislative process lengthy and difficult. Reid needed 60 Senators to vote just to begin debate! The Majority Leader allowed a full day of debate, and afterwards the vote to begin debate passed 60-39. Debate will begin the week after Thanksgiving, and is expected to be full of contention and drama as some Democrats look to offer amendments to change the bill, and Republicans attempt to kill the bill.
Debate is expected to last for weeks, and it is uncertain if a bill will pass the Senate by the end of the year. The Majority Leader needs support from 60 Senators to bring the bill to a final vote. That means changes will be made to appease Senators who have stated that they will not allow the bill to be voted on.
NCIL is analyzing the bill now and will soon provide a synopsis to our membership.
Mikulski Introduces Rosa's Law: “What You Call People is How You Treat Them.”
Source: www.allamericanatriots.com
Senator Barbara A. Mikulski today introduced Rosa’s Law, a bill that will eliminate the terms “mental retardation” and “mentally retarded” from the federal law books. U.S. Senator Michael B. Enzi (R-Wyo.), Ranking Member of the Health, Education, Labor and Pensions Committee, is the Republican sponsor of the bill. Senator Mikulski’s statement as delivered on the Senate floor follows:
“Today I rise to introduce legislation that I’m calling Rosa’s Law. This bill began by listening to the people in my own state. It began when a mother told me a compelling story about her own daughter, her family’s efforts to give her daughter an opportunity for an education and to be treated with respect and with dignity. And at the same time, it began with the advocacy of not only she and her husband, but of her entire family, including her 14 year old son Nick who testified at the Maryland General Assembly.
“As a result of their effort, I’m introducing Rosa’s Law. Before I say more about the bill, I want to tell you about the family. I want to tell you about the Marcellinos, Joseph and Nina who are parents to four children – Nick, Madeleine, Gigi and Rosa. They’re in the gallery now watching this and I wish you could have been with me in my office as I met with the parents and talked with the family.
“Last year, at a roundtable on special education, I met Nina Marcellino for the first time. She told me about her daughter Rosa who was labeled at her school some years ago as mentally retarded. She told me about the stigma, the pain, and the anguish it caused both Nina and her husband, Rosa’s brother and sisters as well as the Rosa herself.
Nina and Joseph reached out to their local disability advocacy organization, The Arc, to see what could be done to change the law. They then reached out to a member of the Maryland General Assembly, a wonderful Representative named Ted Sophocleus. He introduced legislation in the General Assembly that would change the word ‘mentally retarded’ and substitute it with the phrase ‘an individual with an intellectual disability.’
“That’s why I stand on the Senate floor today to introduce, at the request of the family, a law on behalf of this little girl and on behalf of all of the children of the United States of America who are labeled, stigmatized and bear a burden the rest of their lives because of the language we use in the law books.
“My law changes the phrase ‘mentally retarded’ to ‘an individual with an intellectual disability’ We did this in health, education and labor policy without in any way negatively impinging upon either the educational or other benefits that these children are entitled to. Read More.
Flowers for Algernon: Parents Wary of “Cure” for People with Down Syndrome; Scientists Persist
Source: LA Times, by Karen Kaplan
Is a wonder pill necessarily wonderful for people with Down syndrome? Scientists are hard at work developing a cure for the genetic disorder Down syndrome. But even if they succeed, nearly 60% of parents whose children have Down syndrome might take a pass.
In a survey conducted by researchers from the psychiatry department at the University of British Columbia in Vancouver, 27% of parents said they would not cure their children, and another 32% said they were unsure. Many parents expressed concern that a cure would change their child’s personality, said Angela Inglis, a genetic counselor who worked on the survey. “Yes, it is a challenge, but your life will change in so many ways for the good, [but] you can’t imagine not having him,” said one parent who would decline a cure.
That feeling was not universal. Forty-one percent of parents said they would definitely treat their children for Down syndrome. Those parents said they were motivated by a desire to make their kids more independent and to give them more opportunities in life, Inglis said. She added that parents who had the hardest time caring for their children were the most inclined to seek a cure.
…The question about a cure might become less theoretical in the not-too-distant future. In patients with Down syndrome, the brain loses its ability to make an important neurotransmitter called norepinephrine. But researchers from Stanford University and UC San Diego found that in genetically engineered mice that have a rodent version of the disease, injections of a drug called xamoterol returned the animals to normal function.
Once inside the mouse brains, xamoterol converted into norepinephrine and allowed the mice to build nests and complete cognitive tests just like regular animals, according to a study being published in Thursday’s edition of Science Translational Medicine. The drug kicked in within just a few hours, but its effects wore off quickly. Read More.
Google and YouTube Announce Automatic Captions!
Source: Google Public Policy Blog
Last week NCIL staff attended an event hosted by Google and YouTube called “Announcement on Accessibility and Innovation”. They announced new initiatives to increase accessibility in their products, including the preliminary roll-out of automatic captioning in YouTube, an innovation that takes advantage of their speech recognition technology to turn the spoken word into text captions. They also announced that if you have a transcript of your video, you can upload it to YouTube and it will time the captions for you.
This is useful for anyone who is deaf or hearing impaired, but it will have broader effects as well. For example, YouTube captions can be automatically translated, making video more accessible across languages. And while we've had the ability to manually caption videos for a while, automatic captions and automatically timed transcripts lower the barriers and, they hope, helps open YouTube to everyone.
Indeed, with 20 hours of video uploaded to YouTube every minute, captioning YouTube through purely manual means would be very difficult. That's why they're excited about today's announcement. Please note that only 13 YouTube channels will feature automatic captions at this time so that we can gather feedback, but all video owners will be able to upload transcripts and automatically time them. Ken Harrenstien, the software engineer who led this project, describes today's announcements in more detail on the Official Google Blog. Read the rest of this article from their public policy blog.
Action Alert: Support the Campaign to Fund the National Housing Trust Fund
The National Low-Income Housing Coalition (NLIHC) is planning an advocacy campaign to take place on December 1 and 2 to urge funding for the National Housing Trust Fund (NHTF). NCIL supported the creation of the NHTF and was pleased to see its passage last year.
Unfortunately, the funding that was to come through Fannie Mae and Freddy Mac is not available at this time. NLIHC is urging Congress to capitalize the NHTF with at least $1 billion before the end of the year. The NCIL Housing Subcommittee is supporting this effort and urges members to contact their Senators and Representative. Members can contact the Capitol switchboard at 877-210-5351 and ask to be connected to the Senators’ and Representative’s offices. Get more information.
Investigation Begins on Death at Infamous Pennsylvania Facility
Source: philly.com
It was after midnight in mid-April, and Greg Harlen would not stop screaming in his room at the Cardinal Krol Center. Harlen, 52, a resident of the Philadelphia Archdiocese-run home for [men with mental illness], was lying in his bed, writhing in pain. Both of his hips had been shattered.
Later that morning, staffers decided to call 9-1-1. Harlen, who had Down syndrome, was taken to Springfield Hospital - nearly 20 hours after he is believed to have suffered a mysterious trauma that broke his hips. He died in the hospital about a month later of complications from his injuries. "I can't imagine the pain he was in," said Harlen's sister, Sheila Phelan. "I don't understand why they didn't send him to the hospital long before they did."
Harlen's death has renewed scrutiny of the center's operations, five years after the state Health Department released a scathing report that said the 131-bed home in Delaware County had failed to protect its residents from sexual abuse by another resident - and other serious violations. "What's happening out there?" Phelan asked. "Is this normal, that people scream?"
Archdiocese spokeswoman Donna Farrell said she couldn't comment on Harlen's case because the investigation was ongoing. "Greg's death was a real loss and hit everyone here very hard," she said.
It remains unclear how Harlen was injured, whether he was beaten by another person or fell. He was unable to speak afterward. Harlen's family believes that he was assaulted by a caregiver there, but police are awaiting the neuropathology results from his autopsy before deciding whether to proceed with a criminal investigation.
Philadelphia's Department of Behavioral Health and Mental Retardation Services determined last month that Harlen, formerly of Northeast Philadelphia, should have been taken to the hospital sooner. The department found that, "given the intensity and duration" of Harlen's crying on April 16 and 17 and other indications that he was in pain, "more timely action should have been taken by the agency to assess Mr. Harlen for injuries and necessary medical treatment."
Records show that the center, in Marple Township across from Ss. Peter and Paul Cemetery, has repeatedly been cited by the state in recent years for a range of violations, some of which are recurring. Read More.
Senate HELP Committee Holds Hearing on EEOC Commissioner
On Thursday, November 19th, the Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing on the nomination of Chai Feldblum for the position of Commissioner of the Equal Employment Opportunity Commission (EEOC). Chai Feldblum, a strong advocate for the ADA Amendments Act, was greeted by a packed room of disability advocates who eagerly support her confirmation. The nominee was introduced by House Majority Leader Steny Hoyer. She demonstrated her command of the issues as she answered numerous questions about disability rights and the ADA Amendments Act, which was became law last year. The EEOC is currently working on the rule making process for the ADAAA.
The hearing was festive as those in attendance honored HELP Chairman Tom Harkin (D-IA) on his 70th birthday. The entire room sang “Happy Birthday” to Senator Harkin, and NCIL extends birthday wishes to the Senator as well!
Advocates felt the hearing went well, and the nominee left no doubts that she was exceptionally qualified for the position. NCIL strongly supports the confirmation of Chai Feldblum and looks forward to a vote by the Committee, which is expected in a few weeks.
CMS Withdraws Medicaid Rehabilitative Services Proposed Rule
Source: CMS
The Centers for Medicare & Medicaid Services (CMS) is withdrawing the proposed rule, “Medicaid Program; Coverage for Rehabilitative Services” (72 FR 45201). Originally published in the Federal Register on August 13, 2007, the rule proposed to clarify the definition of Medicaid “rehabilitative services” and establish new documentation and other requirements.
This rule had been subject to a congressional moratorium put in place by two laws, the Medicare, Medicaid, and SCHIP Extension Act of 2007 (Pub. L. 110-173) and the Supplemental Appropriations Act, 2008 (Pub. L. 110-252), that prohibited the Secretary from taking any action, including publication of a final rule that was more restrictive with respect to coverage or payment for rehabilitative services than the requirements in place as of July 1, 2007. Before the expiration of the congressional moratorium, section 5003(d) of the American Recovery and Reinvestment Act of 2009 (Pub. L. 111-5), enacted on February 17, 2009, included a “Sense of Congress” that the Secretary should not promulgate as a final regulation the August 13, 2007 proposed regulation. In light of clear congressional concern as well as the complexity of the underlying issues and of the public comments received, CMS decided to withdraw the August 2007 proposed rule in order to assure agency flexibility in re-examining the issues and exploring options and alternatives with Congress and stakeholders.
A notice will be published in the Federal Register on Monday, November 23, 2009. If you have any questions about this withdrawal notice, please contact the CMS Office of Legislation.
CMS Releases State Medicaid Director Letter on Medicaid Self-Directed Personal Assistance Services
Source: CMS
Today, the Centers for Medicare & Medicaid Services (CMS) released a State Medicaid Director letter providing guidance on the implementation of section 6087 of the Deficit Reduction Act of 2005 (DRA), (Pub. L. 109-171), which amended section 1915 of the Social Security Act (the Act) to allow States to provide individuals with the option to self-direct personal assistance services. The purpose of this letter is to provide additional clarification and guidance for section 1915(j)(4)(B)(ii) of the Act, which permits States to allow participants to use their individual budget for “permissible purchases” (i.e., to acquire items that increase independence or substitute for human assistance) to the extent that expenditures would otherwise be made for the human assistance, and section 1915(c) Home and Community-Based Services (HCBS) waiver programs, in which States may offer self-direction and permit participants to purchase “individual directed goods and services.”
Under the Medicaid self-direction option, participants are able to save or accumulate funds from their budgets for the purchase of goods, services, supports, equipment, supplies, or items that will increase independence or substitute for human assistance. In determining whether coverage is permissible, such goods, services, supports, equipment, supplies, or items must 1) be related to a need or goal identified in the State-approved person-centered service plan; 2) be used for the purpose of increasing independence or substituting for human assistance, to the extent the expenditures would otherwise be made for that human assistance; 3) promote opportunities for community living and inclusion; 4) be accommodated within the participant’s budget without compromising the participant’s health or safety; and 5) be provided to, or directed exclusively toward, the benefit of the participant.
The State Medicaid Director letter will also be posted on the CMS website. If you have questions about this announcement, please contact the CMS Office of Legislation.
|
November 23, 2009