Celebrating World Down Syndrome Day While Seeking Justice for Individuals with Down Syndrome in Today’s Society

On March 21st, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

Spots Available for Self-Advocate Businesses at The Arc’s Convention

The MarketAre you an individual with an intellectual or developmental disability who has a small business enterprise? Or, do you know someone who might fit this description? The Arc is looking for self-advocate entrepreneurs to promote their business enterprises at our National Convention in New Orleans September 30-October 2, 2014.

Spots are available for you to have a table in Entrepreneur Alley, a part of The Marketplace exhibition space at the Convention. You can showcase your business to the more than 600 people we are expecting to attend. The Arc offers a highly reduced rate of only $100 per exhibit for those who sign up before June 1.

JennyLu JewelryAnd, for those who can’t travel to New Orleans, we also offer “The Market” – an opportunity for you to let us sell or promote items for you for only $50 plus 10% of gross sales.

Get more details here. Contact Sarah Kennedy via email or at 202-534-3720 for additional information or to sign up today. Remember the deadline for special rates is June 1. After June 1 rates will increase.

Statement of Consortium for Citizens with Disabilities Social Security Task Force Regarding Recent New York City Disability Fraud Allegations

Approximately 100 former police officers, firefighters and others were indicted this week in New York City for allegedly fraudulently obtaining Social Security Disability Insurance Benefits. The allegations are extremely troubling, and if true, these individuals’ actions are nothing short of deplorable.

The Consortium for Citizens with Disabilities Social Security Task Force condemns any misuse of the Social Security disability programs. Any individual who seeks to abuse vital programs like Social Security does so at the expense of the millions of disabled workers for whom benefits provide essential economic security — and must be brought to justice.

At the same time, we must take care not to paint Social Security’s disability programs with the brush of the few who aim to defraud it, without putting them in the context of the millions of individuals who receive benefits appropriately and for whom Social Security is a vital lifeline.

Social Security’s disability programs are a core component of our nation’s Social Security system, which keeps millions of hardworking Americans and their families out of poverty. Extremely strict eligibility requirements mean that fewer than four in ten applicants are approved for disability benefits, even after all stages of appeal. Demonstrating eligibility requires extensive medical evidence, and many individuals are denied benefits despite significant disabilities and chronic illnesses. Benefits are modest but vital – averaging just over $500 per month for Supplemental Security Income and approximately $1,130 per month for Social Security Disability Insurance. For many, disability benefits make it possible to secure stable housing and purchase food, life-sustaining medications, and other basic necessities. Disability benefits can be the difference between life and death for many Americans.

The Social Security Administration works hard to ensure program integrity, but it requires adequate resources to do so. It has been deprived of adequate administrative resources to conduct necessary program integrity work for several years. Congress holds the purse strings to enable the Social Security Administration to ensure that benefits are paid to the right person, in the right amount, and at the right time— and to implement the array of critical safeguards that exist in current law.

We encourage anyone who suspects abuse of the Social Security disability programs to report it via Social Security’s hotline 1-800-269-0271 or online at www.oig.ssa.gov.

Our Top 10 Stories from 2013

With 2013 quickly drawing to a close, we thought we’d take a minute to reflect on some of the top stories we shared with you in the last year (in no particular order):

1) One Arizona high school’s viral video cover of Katy Perry’s song, “Roar”

This viral video featuring Megan Squire, a high school senior with Down syndrome, was a finalist in a  Good Morning America contest (which challenged teens from across the country to make their own music video set to Katy Perry’s song “Roar.”) Produced by students at Verrado High School in Buckeye, AZ, the video depicts Megan’s quest to become a cheerleader. Although the video did not win, Perry loved the video so much that she invited Megan to attend the American Music Awards as her date!

 

2) Wegman’s employee with Asperger’s lifted by community support

In November, a customer yelled at Chris Tuttle– a Wegman’s employee who has Asperger’s syndrome– for working too slowly. Afterward his sister posted about the incident online, and it quickly went viral: As of now, the post now has over 150,000 likes, and the community has rallied to support Chris.

 

3) “Because Who is Perfect?”

An organization created a series of mannequins based on real people with disabilities– The beautiful process was documented in this video, and the mannequins were placed in store windows on Zurich’s main downtown street.

 

4) First Runner with Down Syndrome finishes NYC marathon

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He crossed the finish line hours after the winners, but Jimmy Jenson still set a record at the ING New York City Marathon: He’s the first person with Down syndrome to complete the race.

Jenson, who is 48 and from Los Angeles, ran all 26.2 miles with his friend Jennifer Davis at his side. The pair met 12 years ago through the program Best Buddies, a group that aims to connect people who have intellectual disabilities with people who do not. When they met, neither of them were runners. But that changed when Jenson suggested they run a 5K together. Since that first race, the pair have run a number of races together, including the Los Angeles marathon this spring.

 

5) One mom’s beautiful response to a shocking, hateful letter about her son

Max and Karla Begley

Max and his mom, Karla. Via lovethatmax.com

Karla Begley, is the mother of a 13-year-old boy with autism, Max, who was the subject of an anonymous hate-filled letter that made headlines around the world. The blog Love That Max posted her response.

 

6) Breakfast, Lunch & Hugs at Tim’s Place

“A lot of people told my parents that they were very, very sorry. I guess they didn’t know then just how totally awesome I would turn out to be.” Tim is a business owner, running the world’s friendliest restaurant, located in Albuquerque, New Mexico.

 

7) Fashion Photographer reframes beauty with ‘Positive Exposure’ project

Grace

One of the participants in the project, Grace. Via photoblog.nbcnews.com

Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism, to promote a more inclusive, compassionate world where differences are celebrated. “It’s about reinterpreting beauty. It’s about having an opportunity to see beyond what you’re told and what we’re forced to believe that that’s beauty.” – Photographer, Rick Guidotti, founder of the project.

 

8) ‘Born with Down syndrome, Newark man wins respect powerlifting’

We loved this great story about talented powerlifter Jon Stoklosa– “When asked why he likes lifting such heavy weights, Jon gets right to the point. “It’s fun,” he says, a slight smile creeping across his face.”

 

9) When Bill Met Shelley: No Disability Could Keep Them Apart

Bill & Shelley

The couple relaxes at home after work. Photo via Washington Post.

“You know that scene in ‘Dirty Dancing’ where Baby meets Johnny for the first time? It was kind of like that.” One couple’s love story.

 

10) A Life Defined Not By Disability, But Love

Bonnie and Myra Brown

Bonnie & Myra Brown. Photo via NPR.

Bonnie Brown, who has an intellectual disability, has raised her daughter Myra as a single mom. They gave us a window into their mother-daughter relationship last February on NPR’s Morning Edition.

 

Being Thankful for You!

Thanksgiving is right around the corner. 2013 seems to have flown by, and everyone at The Arc is reflecting about all the things for which we are thankful.

First and foremost, the board and staff of the National Office are most appreciative of YOU and your ongoing support of our cause nationally, as well as with local community and state chapters of The Arc.

We could not be more thankful that you and all of our generous supporters are dedicated to our mission, helping us continue to ensure that those with intellectual and developmental disabilities live a fully inclusive life.

What are we asking for? Only that this holiday season you will please accept a big THANK YOU for your commitment, support, and generosity to The Arc throughout the year. We could not have made the progress we have this year without you!

Whether you stay home or travel, have a safe and happy Thanksgiving from all of us here at The Arc.

 

Are you a caregiver? Then we want to hear from you!

Each November we celebrate National Family Caregivers Month, and we all know a caregiver who we respect and admire.  Caregivers truly deserve year-round recognition, because they do what they do out of love and a desire to help someone live the fullest life they can despite the challenges they might face. Being a caregiver for a person with intellectual and developmental disabilities (I/DD) can be as difficult as it is fulfilling at times. Dedicating your time to help another person with everything from their personal care and financial planning, to advocating for them and ensuring their life is enjoyable is no small task. The shared relationship, emotions, experiences, and memories between you and the person you care for can cause physical, emotional, and psychological strain on both the caregiver and the person with I/DD receiving care. According to The Arc’s FINDS survey, 88% of caregivers feel physical fatigue, and 81% feel emotional stress or experience upset or guilt as a result of their caregiving activities.

As part of The Arc’s HealthMeet health assessment and education initiative, we seek to find out more about how caregivers of all ages and types – parents, siblings, paid staff, and others – view the health status of the person with I/DD they take care of as well as their own health. Because of the additional reported physical and emotional stress on both the caregiver and the person receiving care, we also look to find out more about what plans are in place to support the person with I/DD you take care of if something were to happen to you.

To help us find out more about these issues, please complete this survey or send it to a caregiver you know. This survey not only helps The Arc find out more about health issues experienced by people with I/DD and their caregivers but can also be used to help caregivers think about “red flag” health concerns that they may have about the person they provide care for.

The information provided in this survey is confidential and will never be used to identify someone specifically. Individuals filling out the survey will have the opportunity to provide contact information if they choose to do so. This information will only be used to send information about The Arc and its health promotion programs.

If you have any questions about this survey, please contact Jennifer Sladen at sladen@thearc.org.

This survey is a modified version of the HealthMatters Caregiver Assessment Survey created by the University of Illinois at Chicago, Department of Disability and Human Development. HealthMeet® is a project of The Arc funded by a $938,745 cooperative agreement with the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities Grant #5U59DD000993-02.

A New Affordable Care Act Resource

The Arc is excited to be part of the National Disability Navigator Resource Collaborative (NDNRC) a new resource for people helping the uninsured to gain coverage through the health insurance marketplaces.  The collaborative is led by the American Association on Health and Disability (AAHD) and is supported by a one-year grant from the Robert Wood Johnson Foundation.

The Collaborative intends to develop training and technical assistance materials to respond to the need for cross disability training for people who are helping with the enrollment process.  The Collaborative will address issues particularly important to people with disabilities such as the interplay between the private marketplaces, Medicaid and Medicaid alternative benefit plans, the need to carefully compare plans especially in the rehabilitation and habilitation benefits, the pharmacy benefits and mental health and substance abuse parity.

The funding for this project is scheduled to begin this week and the first meeting of the advisory organizations will take place in late October.  The Arc recognizes the critical need for this work and looks forward to being a part of the effort.

The Agreement to Re-Open the Federal Government and Raise the Nation’s Debt Ceiling – What Does it Mean to The Arc?

The Arc is relieved that Congress reached a last minute agreement to reopen the federal government and avoid defaulting on our debts.  The government shutdown had already put in jeopardy services and supports that people with intellectual and developmental disabilities (I/DD) rely on, and the narrowly averted default would have resulted in an economic crisis in our country and around the world that would have affected all citizens.   However, despite this temporary victory, we recognize the very difficult challenges that lie ahead for the disability community in the next few months.

What is in the Agreement?  The measure, which passed by comfortable margins in both chambers and was signed shortly afterwards by President Obama, has five key provisions:

  1. reopening of the federal government through January 15 at sequestration levels (the approximately 5% automatic, across-the-board spending cuts for discretionary program);
  2. an extension of the debt limit until February 7 and a provision that requires a proactive vote to disapprove extending the debt limit, as opposed to having regular votes to raise it;
  3. establishment of a House-Senate budget conference committee to come up with long-term spending plans by December 13;
  4. a requirement for income verification for recipients of subsidies under the Affordable Care Act’s newly-established health insurance exchanges; and
  5. back pay for furloughed federal workers.

How does this impact The Arc?  The budget conference committee is a return to a more normal way of doing business in the Congress.  However, it does mean that everything is on the table for consideration, including  proposals harmful to people with I/DD that have surfaced in previous budget proposals.  Some of these have included cuts to entitlement programs that people with disabilities rely on for their health and economic security, such as block granting Medicaid and dramatically cutting spending for the program, turning Medicare into a voucher program and cutting payments to doctors, and reducing the costs of living adjustments for Social Security and other programs through the adoption of the “chained” consumer price index (CPI).  Discretionary programs (which include disability-related programs such as housing, education, and employment) also have been targeted for further cuts.   On the other hand, the budget conference committee leadership already met, with some leaders stressing that they must find common ground.  Learn more about the budget conference at Politico.com.

What Can The Arc Do?  The Arc and our network of advocates must be prepared to respond if the budget conference committee begins to seriously consider “entitlement reform,” which mostly consists of cuts and harmful changes to Medicaid, Social Security and its disability programs, and Medicare, as well as threats to funding for critical discretionary programs.  The Arc will monitor this closely.  Learn more about how to get involved by signing up for our Action E-List.

Another Media Hit on Social Security Disability Programs – Get the Facts

60_Minutes_logoSunday night, CBS’ 60 Minutes aired a piece they dubbed “Disability, USA” in which they portrayed the Social Security disability programs as exploding over the last few years and in danger of running out of funds. We’re deeply concerned that to press the panic button on the funding stream for Social Security Disability Insurance (SSDI) is irresponsible, and we’re saddened to see 60 Minutes join other national media in perpetrating myths and inaccuracies.

Members of The Arc and the individuals and families we serve know Social Security is an essential lifeline that keeps millions of Americans with significant disabilities from homelessness and deep poverty.  About 1 in 5 Americans live with a disability, and this report failed to show the importance these programs play in many of their lives.

It’s disappointing to see reporting that puts people who rely on these programs to survive on edge, when the truth is much less sensational but also much more interesting.  Here are three important facts to keep in mind:

1. It’s incredibly difficult to qualify for Social Security disability benefits.  The Social Security Act’s disability standard is one of the strictest in the developed world.  Fewer than four in ten applicants are approved, even after all stages of appeal.  Many are terminally ill: 1 in 5 male SSDI beneficiaries and nearly 1 in 6 female SSDI beneficiaries die within 5 years of receiving benefits.  Due to the complexity of the process, many people who appeal seek help from an attorney or representative who is paid by the claimant out of past-due benefits – not out of the Disability Insurance Trust Fund, as suggested by 60 Minutes. As noted by the Consortium for Citizens with Disabilities, the fee process for Social Security claims is highly regulated and the average fee in most cases is less than $3,000.

2. For those of us paying attention, the growth in Social Security Disability Insurance (SSDI) is not surprising – in fact, it has been projected since 1994.  According to Social Security’s Chief Actuary, the growth in SSDI (from 1980 to 2010) is mostly the result of several factors: substantial growth in the U.S. population; the baby boomers aging into their high-disability years; and women entering the workforce in large numbers in the 1970s and 1980s so that more are now “insured” for SSDI based on their own prior contributions.

3.  The DI trust fund will need to be replenished in 2016 – but this is not a new development, or an unprecedented one.  Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the OASI (retirement) and DI (disability) trust funds – about equally in both directions – some 11 times to account for demographic shifts. In 1994, the last time such reallocation occurred, SSA actuaries accurately projected that similar action would next be required in 2016.

The 60 Minutes program also reported on fraud in the system that occurred in West Virginia and Kentucky.  The Social Security Administration – and advocacy organizations like The Arc – takes fraud very seriously because it harms the millions of honest people who rely on the program as a lifeline to basic necessities, and it hurts the integrity of the program.  Anytime you suspect fraud is occurring, you can contact the SSA hotline at 1-800-269-0271 or report it online.  We all want to root out the bad actors and focus the program on those that need it most – people with disabilities who without the SSA, would be homeless, hungry, and cut off from access to life saving medicines and services.  But it’s also important to keep in mind that most experts agree that fraud is very rare. Former SSA Commissioner Michael J. Astrue, appointed by President George W. Bush, estimates that fraud constitutes less than 1 percent of all applicants.

Finally, we believe that resources are vital to ensuring that SSA can properly administer its disability programs. The continued impact of underfunding has had serious implications, including limiting the agency’s ability to perform vital watchdog functions. And the current government shutdown is having even more dramatic effects.

Here are some additional resources for learning more about the facts on the Social Security disability programs:

Happy 40th Birthday Section 504!

San Francisco Sit-InIn 1973, Congress passed the very first civil rights protection for people with disabilities. Section 504 of the Rehabilitation Act prohibits discrimination based on disability by any entity that receives federal funds. Senator Hubert Humphrey was a champion of civil rights for people with disabilities. He said, “[T]he time has come to firmly establish the right of disabled Americans to dignity and self-respect as equal and contributing members of society and to end the virtual isolation of millions of children and adults.”

As with any law, regulations needed to be written to define who a person with a disability was and what constituted discrimination. There was much controversy surrounding Section 504 and getting the regulations published was a battle that lasted for several years. Disability advocates had to file a lawsuit to get the government to finalize the regulations. Unfortunately, the court did not set a date by which the regulations had to be published. The disability community grew more frustrated. A coalition was formed to lead an effort to get regulations out. The coalition was called the American Coalition of Citizens with Disabilities.

The federal government set up a task force to study the regulations, but failed to include any individuals with disabilities among its members. The disability community feared that the rules were being watered down significantly. Rather than wait for weak regulations to come out and then submit comments, the community borrowed from the African American Civil Rights movement and organized a sit-in at the San Francisco office of what was then the Department of Health, Education and Welfare (HEW). The San Francisco sit-in lasted for 28 days! A refrain from those days was, “We can’t even get on the back of the bus.”

A Congressional hearing was held at the San Francisco HEW office where leaders of the disability rights movement (including Judy Heumann and Ed Roberts) gave compelling testimony about the discrimination each of them faced on a daily basis. A smaller group of disability rights advocates traveled to Washington and demonstrated in front of the HEW Secretary’s home and the church where the President was worshiping. Finally, on April 28, 1977 the Secretary of HEW signed the regulations.

Today, every federal agency has Section 504 regulations concerning the programs that receive funds from that particular agency. And today, discrimination is prohibited on the basis of disability in education, employment, state programs, health care facilities, airports, public libraries, public parks, local government buildings and programs; the list goes on and on.