You’re invited to enjoy the classic Southern city of New Orleans with The Arc as we network, learn and lead the movement for people with intellectual and developmental disabilities into the future!
The Arc’s annual National Convention is set for September 30 – October 2 in New Orleans, LA with more than 600 people who share your passion for disability issues. Absorb the energy of committed volunteer leaders, chapter professionals, family members and advocates. And keep your skills fresh by learning from the best in the field and sharing experiences with colleagues from across the country. Add your voice to those who are shaping the future of The Arc. Then take that energy and enthusiasm back to your community and lead the way to change.
For professionals: Sessions dedicated to your professional and volunteer leadership development. New ideas, inspiration and networking opportunities, plus National Conference of Executives (NCE) training and activities!
For the grassroots: Sessions dedicated to advocacy and strengthening The Arc’s grassroots network, plus the hottest topics in the I/DD movement.
For people with I/DD: A symposium planned by and for self-advocates plus educational sessions with opportunities to learn, grow and connect with each other.
For everyone: Fun events and networking opportunities, a celebration with our local host, The Arc of Louisiana, plus shopping at microbusiness enterprises run by people with I/DD.
May is Williams Syndrome Awareness Month. Below is a guest post from Mike McFall of the Williams Syndrome Association with more information on this rare disorder and the association serving them.
Williams syndrome (WS) is a rare genetic disorder caused by the deletion of 28 genes on one copy of an individual’s chromosome #7. Research is ongoing to determine the function of the genes in the deletion, and utilize that knowledge to help in the development of treatments for the various aspects of WS, but progress is slow. Eventually, it is hoped that research on the WS deletion will lead to treatments to help, not only those with WS, but others with Autism, diabetes, high blood pressure and anxiety disorders.
Williams syndrome affects 20,000 to 30,000 people in the United States. Families of affected individuals encounter major struggles. Individuals born with WS, share many common facial features as well as a constellation of medical, neurological and behavioral characteristics. Medical characteristics must be followed closely by physicians to prevent serious problems. Neurological and behavioral characteristics require therapeutic interventions and special educational strategies to provide the individual with the best chance for a happy and productive life. Most individuals with Williams syndrome have mild to severe cardiovascular disorders, often requiring surgery, and many suffer from kidney, bladder and gastrointestinal difficulties as well. Children with Williams syndrome can experience hyper – sensitive hearing, feeding problems as infants, developmental delays, poor motor skills, and mild to severe learning disabilities. As they grow, individuals with WS struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential, and few are able to earn a large enough salary to be self-sustaining.
Added to the challenges, though, are the extraordinary gifts of Williams syndrome. Unlike many disorders that can make connecting with your child difficult, individuals with WS tend to be social, friendly and endearing. Parents often say that the joy and perspective a child with WS brings into their lives had been unimaginable, and that their special personalities and perseverance help make dreams come true. Individuals with WS often know many more people in their communities than their parents. Adults with WS contribute to their communities as both paid employees and volunteers, working in restaurants, at senior centers and assisted living facilities, in libraries or as store greeters or veterinary aides. No matter what they are doing, individuals with WS make a special impact, and have a unique ability to quite naturally brighten the days of those around them. Individuals with WS also have a very special relationship with music. For most, there is a passion for music that in itself can help enrich their lives. For some, the passion blooms into a musicality and musical skills that far exceed their abilities in other areas.
The Williams Syndrome Association (WSA), Inc. was formed in San Diego, CA in 1983 by a handful of families of children with Williams syndrome. The mission of the WSA is “to help all individuals with Williams syndrome and similar characteristics reach their full potential.” The Association accomplishes its mission by providing a wide range of services – from programs and scholarships to resources and research support. The WSA is the most comprehensive resource for families living with Williams syndrome as well as doctors, researchers and educators. Since its inception, the WSA has touched the lives of more than 5000 individuals with Williams syndrome, from all 50 States and around the world, and lists an additional 8000 professionals, relatives and friends in its database. The WSA provides life-changing enrichment opportunities such as camp programs for youth and young adults to ages 6 – 21, and an annual reunion week for “Adventure Seekers”, adults with WS ages 21 through 35. Every two years, the WSA hosts an international research symposium, and a 5 day educational conference for families, and each year more than 150 social, educational and fundraising events provide opportunities for families throughout the U.S. to gather in celebration of their special children with WS. The Association also provides scholarships for all of its own programs (camps, conferences, and conventions) as well as other specialized enrichment and postsecondary/transition programs, and there is funding available for the non-insured expenses associated with the essential medical treatments required by many individuals with Williams syndrome. Special initiatives help to bring new information and valuable resources to families. Current initiatives are helping to bring assistive technology to students with WS, and housing models and program funding options to parents of adults.
The Williams Syndrome Association is volunteer-driven. It relies on the regular assistance of more than 100 volunteers in 18 geographic regions around the country. Above all, the Association is about family – it understands that families comprise the foundation and supports that we all need to navigate the frustrations and hurtles that life puts in our path as well as celebrate the special joys that come our way. The Williams Syndrome Association works hard to create a 2nd, more specialized family for its members to rely on – sharing in the joys that our children with Williams syndrome bring to us and to those in our communities, and offering supports, advice and resources when they are needed to overcome the medical, neurological, developmental and social challenges that come with the diagnosis of Williams syndrome.
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.
The 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.
NDSS 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.
Are 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.
And, 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.
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.
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!
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.
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.
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.
“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.
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.
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.”
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.
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 firstname.lastname@example.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.
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 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:
reopening of the federal government through January 15 at sequestration levels (the approximately 5% automatic, across-the-board spending cuts for discretionary program);
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;
establishment of a House-Senate budget conference committee to come up with long-term spending plans by December 13;
a requirement for income verification for recipients of subsidies under the Affordable Care Act’s newly-established health insurance exchanges; and
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.