1) What’s Happening in the Nation’s Capital?
IL Funding Remains Level in 2012!
Mixed Messages on CLASS Leave Advocates Waiting for Answers
ESEA Mark Up Today: Contact Your Congressional Leaders!
2) National News
Florida House Bill 4063 to Repeal Statewide Ban on Dwarf Tossing: Sign the Petition Against It!
Change.org Petition: Pardon Neli Latson!
Concerns Linger As New Down Syndrome Test Hits Market
3) State News
Accessible Taxi Makes State Debut in Charleston
Inside Access Living: Manager of Community Development Gives A Tour of His Office
Philadelphia: 4 Adults with Disabilities Found Chained in 'Dungeon' in Apparent Social Security Fraud
4) Announcements and Additional Resources
The National Youth Leadership Network Is Proud To Announce: Disability Culture Zine!
New Resource: ESEA Flexibility Request: Tips for Protecting Students with Disabilities
Limits On Sunshine: What Parents Are Told About Alternative Assessments Under ESEA
IL Funding Remains Level in 2012!
Fellow IL advocates, our hard work has paid off! According to identical versions of House and Senate draft bills, federal funding for Centers for Independent Living will remain at current levels for FY 2012. Considering the present political climate in Washington, it is actually good news that Centers will remain funded at FY 2011 levels, as looming budget cuts continue to threaten every sector of government.
This means that Centers will continue to see approximately $80 million in funding next year. In addition, the House and Senate have rejected the President’s proposal to combine Parts B & C in the IL funding stream. NCIL has determined that the Administration’s plan would have seriously harmed America’s Independent Living Program, and is happy with the bills that are currently making their way through Congress. IL advocates should be proud of their efforts this year to preserve funding for Centers.
Mixed Messages on CLASS Leave Advocates Waiting for Answers
Source: The Hill, by Julian Pecquet
President Obama is against repealing the health law's long-term-care CLASS Act and might veto Republican efforts to do so, an administration official tells The Hill, despite the government's announcement Friday that the program was dead in the water.
"We do not support repeal," the official said Monday. "Repealing the CLASS Act isn't necessary or productive. What we should be doing is working together to address the long-term care challenges we face in this country."
Over the weekend, The Hill has learned, an administration official called advocates of the Community Living Assistance Services and Supports (CLASS) Act to reassure them that Obama is still committed to making the program work. That official also told advocates that widespread media reports on the program's demise were wrong, leaving advocates scratching their heads.
Health and Human Services Secretary Kathleen Sebelius announced Friday in a blog post on the liberal Huffington Post website that the administration did not see a way to make the program sustainable. Sebelius indicated her agency hadn't been able to figure out a way to ensure the program providing long-term care paid for itself as required by law.
Later in a call with reporters on Friday, an HHS official said work on the program was being suspended. "We won't be working further to implement the CLASS Act. … We don't see a path forward to be able to do that," Assistant Secretary for Aging Kathy Greenlee told reporters on Friday.
The nonpartisan Congressional Budget Office, meanwhile, said Monday that repealing the program would not add to the deficit, making Republican repeal efforts that much easier. The Obama administration sold the healthcare law with the argument that it would lower the nation's long-term health costs, and the CLASS Act was an important reason why. Read More.
ESEA Mark Up Today: Contact Your Congressional Leaders!
Today, the Senate Health, Education, Labor and Pension (HELP) Committee will hold a full committee hearing to review and “mark-up” the bipartisan reauthorization of the Elementary and Secondary Education Act (ESEA). The NCIL staff has been involved in many discussions and meetings and has been working on changes to language with the HELP staff and other disability advocacy coalitions.
We would first like to give our deepest appreciation to Senator Harkin, Chair of the HELP Committee, for his great leadership in this most important work. His leadership and outreach made this reauthorization a reality in the 112th Congress. But because this is a bipartisan bill, there are some ideas and opinions written into the bill that have caused serious concern. The NCIL staff, along with the Education and IDEA Subcommittee, has provided expert advice in solving many of these issues. Please see yesterday’s Action Alert on this topic and contact your leaders in reference to these concerns.
In brief, two areas are of great concern: the 5% rule and the alternative assessments. Below is an excerpt from the Consortium for Citizens with Disabilities (CCD) Education Task Force sign-on letter to the Senate HELP Committee. Go to the CCD website to read the entire letter.
“We do, however, want to express our serious concern about the bill’s requirements to only focus and require instructional intervention, support and accountability on the lowest performing public schools and schools with the largest achievement gaps and lowest graduation rates. We concur that concentration on these schools is certainly needed. At the same time, there is an on-going need for attention and instructional intervention for students with disabilities who are not clustered in these schools. One of the most positive aspects of the last ten years has been the attention States, school districts and schools have placed on the academic achievement and graduation rates of students with disabilities. We now have evidence that students with disabilities can achieve at academic levels on par with their non-disabled peers. We believe that all students with disabilities, not just those who are enrolled in the bottom 5 percent of schools, must continue to have access to the supports and instructional interventions outlined in the Elementary and Secondary Education Act.”
Background: It is expected that Senator Isakson (R-GA) will offer an amendment during HELP Committee consideration of the Elementary and Secondary Education Reauthorization Act of 2011 that would allow schools to discriminate by significantly lowering the academic expectations for students with disabilities. We urge you to join us in helping to defeat this amendment by contacting members of the HELP Committee.
- The Isakson amendment would remove the limits on how many students with disabilities can be counted as making adequate results or sufficient progress using less challenging systems of standards and assessments. This amendment would allow schools to take millions of students with disabilities off track for a regular high school diploma as early as 3rd grade when assessment decisions are made in schools, relegating them to lower career and college expectations—simply because they receive special education services.
- The Isakson amendment incorrectly promotes that most students with disabilities can’t learn or achieve when most students with disabilities are able to learn and achieve, just like all other students, when provided appropriate services and supports.
- The Isakson amendment promotes abuse and overuse of alternate assessments by allowing any student with a disability to be tested through these assessments.
- The Isakson amendment will turn back the clock on the advances made in educating students with disabilities over the past 10 years.
We will continue to work with the senate HELP staff to create the best reauthorization of ESEA possible. There is some indication that the House has been working on their version of a reauthorization. The NCIL staff will remain diligent with outreach to the House Education and the Workforce Committee, chaired by Rep. John Kline (R- MN). Please look for NCIL Action Alerts and reach out to your congressional leaders as much as possible. Contact Dara Baldwin, Policy Analyst at dara@ncil.org with any questions.
Florida House Bill 4063 to Repeal Statewide Ban on Dwarf Tossing: Sign the Petition Against It!
Source: Little People of America
Due to its strong implications to the dwarf community and to the individual, Little People of America strongly opposes Florida House Bill 4063, which repeals a statewide ban on dwarf tossing. The bill was introduced on Monday, October 3, 2011.
Dwarf tossing, banned in Florida in 1989, is undoubtedly unsafe and subjects the individual being tossed to serious medical harms. Even with padded gear on, dwarf tossing exposes the individual to permanent injuries to the spinal column or even death.
While dwarf tossing is an extreme risk to the individual, it also objectifies the entire dwarf community. “The individual who is tossed is like a shot put or a javelin thrown in a track and field event,” said Gary Arnold, President of Little People of America. “Far from participants, dwarf tossing treats people of short stature as a piece of equipment and encourages the general attitude that people with dwarfism are objects.”
Historically, members of the dwarf community, who were not involved in dwarf tossing, were put at risk because of the message of objectification sent by dwarf tossing. Members of the dwarfism community reported being fearful while alone in public due to the new risk of being picked up or threatened to be used as a piece of equipment. “In 1989, when Florida passed the ban on dwarf tossing, it responded to the outrage and concerns of the dwarf community and our allies,” said Leah Smith, Vice President of Public Relations for Little People of America. “Rather than limit the liberties of any citizen, the ban protects the health and welfare of the community.”
With more than 70 Chapters around the United States, including in Florida, Little People of America plans to organize against the repeal legislation. “In a day and age when society is confronting bullying,” continued Smith, “it is a shame that this bill takes us backwards. It enables bullying.” Sign the petition.
Change.org Petition: Pardon Neli Latson!
Reginald “Neli” Latson, is a 19 year-old autistic young man, who on the morning of May 24, 2010, sat in the grass outside the local library in Stafford, VA and waited for it to open. Police allege that it was reported that there was a suspicious black male who had a gun. Deputy Calverley then approached Latson and searched him for a gun. No gun was found. Calverly asked Latson for his name, and Latson refused and tried to walk away as he had committed no crime. Calverly then grabbed Latson and attempted to arrest him without reading him his Miranda RIghts or calling for backup.
After a 3-day trial, Latson was found guilty of assaulting a law enforcement officer, among other charges, and 10 1/2 years in prison was recommended. Latson’s defense centered around the fact that he has Asperger’s syndrome, part of the autism spectrum, a condition caused by an abnormality of the brain. This case has raised concerns about how law enforcement deals with the developmentally or mentally disabled. Latson had done nothing wrong and was completely within his rights to sit on the grass until the library opened, but was accosted by an officer who then proceeded to question, detain and arrest him, even after confirming he did not have a gun. Once it was established that he did not have a gun, Neli Latson should have been left alone. For the next 11 days Neli was held without bail and in isolation at the Rappahannock Regional Jail. Police allowed Neli's school counselor to visit, and she relayed messages and information to Lisa, Neli's mother, who was allowed only one visit. "He wasn't able to speak or communicate with me. He appeared to be in a catatonic state," Lisa says.
As Neli's time in isolation dragged on, police interrogators found him non-responsive and disturbed, and a judge ordered the young man transferred to a state mental institution for 30-days of treatment and evaluation. He was returned to jail for one year and spent 8 months of that year in tortuous isolation. Neli is no longer the same boy and is depressed and deteriorating, losing what functioning he had, and badly in need of a therapeutic facility, not another year of prison. Read more and sign the petition.
Concerns Linger As New Down Syndrome Test Hits Market
Source: DisabilityScoop, by Michelle Diament
In a move that’s been anticipated for years, a prenatal blood test to detect Down syndrome became available Monday in 20 major cities, the company behind the screening tool said. The test, developed by California-based Sequenom, accurately identified Trisomy 21 — the most common form of Down syndrome — in 98.6 percent of cases, according to a study published Monday in the journal Genetics in Medicine. The research indicates that there is a false-positive rate of 0.2 percent.
Officials with Sequenom say the new blood test is intended for the estimated 750,000 pregnant women each year who are at high risk for having a baby with Down syndrome. The test can be performed as early as 10 weeks into a pregnancy.
The ability to detect Down syndrome in the womb by analyzing the mother’s blood is considered a breakthrough. Previously available testing methods such as amniocentesis are far more invasive and present a risk of miscarriage. However, the availability of a noninvasive test has also been met with concern by many of those affected by Down syndrome. They are worried that easier screening could lead to fewer children with the chromosomal disorder and ultimately prompt reduced supports and services for the population.
Nonetheless, advocates at the National Down Syndrome Society were careful not to criticize the development Monday. “Our concern at NDSS is always for accurate information, from any test, for the pregnant woman and her family,” the organization said in a statement to Disability Scoop.
In anticipation of prenatal blood tests, Down syndrome advocates have worked for some time to promote awareness of what life is like with the developmental disability. A series of surveys released last month found that the overwhelming majority of people with Down syndrome are happy with their lives. Moreover, family members said that having a person with the disability around gave them a more positive outlook.
Accessible Taxi Makes State Debut in Charleston
The state's first Americans With Disabilities Act-certified wheelchair-accessible taxi service will begin operating in Charleston on Nov. 1, following a ceremony at the state Capitol Wednesday. C&H Taxi will operate the ramp-equipped Dodge Caravan van with a lowered floor on a 24-hour, 7-day-a-week basis.
The Wheelchair Assisted Vehicle, or WAVE, was purchased through a federal New Freedom grant, made available through a partnership of the West Virginia Division of Public Transit, the Federal Transit Administration, the Mountain State Centers for Independent Living and C&H Taxi. Government funding paid for 80 percent of the vehicle's $33,000 cost, while C&H paid for 20 percent.
"It works the same as any of our other taxis," said Jeb Corey, CEO of C&H Taxi. "You call 304-344-4902 and request the WAVE. The fares are the same for WAVE riders as they are for our other passengers."
"It's a service that's critically needed," said [NCIL’s own] Ann Watts McDaniel, director of the West Virginia Statewide Independent Living Council.
While many KRT buses are lift-equipped, wheelchair-assisted riders must live near a bus route and have a destination along the line to make use of them. Kanawha Alternative Transit vehicles are limited to pickup sites and destinations relatively close to an existing bus line, and operate only during hours KRT operates. Read More.
Inside Access Living: Manager of Community Development Gives A Tour of His Office
Source: Chicago Tribune, by Kristin Samuelson
As a community organizer, Beto Barrera's job is to motivate others. So the manager of community development at Access Living in Chicago surrounds himself with photos and posters that inspire him. "You've got to work in an atmosphere where people feel comfortable to kick ass," Barrera said.
Access Living, founded in 1980, is an advocacy group for the disabled. Barrera originally came to Access Living to lobby for the Americans with Disabilities Act in 1990 and amend the Fair Housing Act. Barrera planned to leave shortly after, but 22 years later, he's still helping lead grass-roots campaigns.
"Every organizer wants to learn," Barrera said. "I had never worked with people with disabilities, and then I just fell in love with these individuals." Before joining Access Living, Barrera spent 14 years organizing campaigns for the United Auto Workers Union and three years with the United Farm Workers Union of America. He said after witnessing firsthand "the willingness (people with disabilities had) to fight for what they believe," he was hooked.
"I've done the gay/lesbian movement; the feminist movement; the American Indian movement; the Chicano/Mexicano (Freedom) movement," Barrera said. "But when I saw these folks giving it all they had with that passion, I said, 'Wow,' and I got stuck here." Read More.
Philadelphia: 4 Adults with Disabilities Found Chained in 'Dungeon' in Apparent Social Security Fraud
Four adults “with the mental capacity of 10-year-olds” were found chained in a "dungeon" inside a house in Philadelphia, authorities said Saturday. A janitor discovered the captives - three men and one woman - shackled to a water heater, according to the Philadelphia Inquirer. They were found in a 15-by-15 room where they had been locked behind a steel door.
Authorities described them as malnourished and living in "deplorable" conditions. The room also had several buckets filled with urine and feces. The four were being held by at least three people who were stealing their disability checks, authorities said.
The unidentified suspects - one woman and two men - have been arrested but not formally charged. "We're going to find every crime possible in the crime code to put on these individuals," Philadelphia police spokesperson Lt. Ray Evers told the Inquirer.
Possible charges include kidnapping, conspiracy, and aggravated assault, he said. Read More.
The National Youth Leadership Network Is Proud To Announce: Disability Culture Zine!
Source: NYLN
The National Youth Leadership Network is a youth-led organization that works to build power and community among young people with disabilities. This summer, our Zine Leadership Team put out a call for submissions to create an online zine about disability culture.
We received over 40 submissions from young people with disabilities all over the United States. Some were students. Others were poets. Everyone had a lot to say about disability culture. Our Zine Leadership Team edited submissions and compiled all the work into a zine. We are excited to share our zine with you. We learned so much about media-making in the process: mostly that by participating in disability culture, we are creating it.
To read our zine, visit http://zine.nyln.org. If you enjoy what you read, please consider making a donation to support the production of our next zine. You can make a donation at www.nyln.org. This zine was made 100% for and by disabled youth!
New Resource: ESEA Flexibility Request: Tips for Protecting Students with Disabilities
The National Down Syndrome Society and The Advocacy Institute have created a document to help parents and advocates play an important role in the development of Flexibility Requests under the Department of Education’s new ESEA Flexibility plan.
Using the Flexibility Request as a guide, ESEA Flexibility Request: Tips for Protecting Students with Disabilities provides tips for reviewing a state request and resources that can help with that process.
According to Education Week, States that plan to apply for flexibility by Nov. 14: Colorado, Florida, Georgia, Indiana, Kentucky, Massachusetts, Michigan, Minnesota, Mississippi, New Jersey, New Mexico, North Carolina, North Dakota, Oklahoma, Tennessee, Vermont and Wisconsin.
States that plan to apply for flexibility in mid-February: Arkansas, the District of Columbia, Delaware, Hawaii, Idaho, Illinois, Iowa, Kansas, Maine, Maryland, Missouri, Nevada, New Hampshire, Ohio, Puerto Rico, Rhode Island, South Carolina, South Dakota, Virginia, and Washington.
States applying with no timeline: Connecticut and Oregon.
Limits On Sunshine: What Parents Are Told About Alternative Assessments Under ESEA
The IDEA National Survey Project is a collaboration of the National Center for Learning Disabilities, Autism National Committee, National Down Syndrome Society, and The Advocacy Institute. Over 3,900 parents of students with disabilities shared perceptions about their children’s education and whether their rights are protected.
The survey included three questions about the assessments required under the Elementary and Secondary Education Act (ESEA). At present, federal regulations permit states to administer two alternate assessments. The Alternate Assessment based on Alternate Achievement Standards (AA-AAS) may be given to students with the most significant cognitive disabilities. Federal Regulations have also allowed states to administer the Alternate Assessment based on Modified Achievement Standards (AA-MAS) to certain other students with disabilities. This amounts to 20% of students with disabilities. Problems and concerns with both alternate assessments have been documented elsewhere.
Assessments often are related to whether students receive a high school diploma. By December 2010, 28 states (covering 74% of public school students) required students to pass an exit examination to receive a high school diploma. While nearly 256,000 students with disabilities graduated with a high school diploma in 2009-10, nearly 60,000 received only a certificate of completion, attendance, or achievement. A diploma is a gateway to many jobs, certain college education programs, scholarship programs, and other opportunities. Unemployment rates are highest among Americans without high school diplomas. Read the Summary of Survey Responses (PDF).
|
October 19, 2011