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.

 

The Arc’s Statement on New CDC Autism Data on Minneapolis Somali Population

This week, the Centers for Disease Control and Prevention (CDC) released new project findings  on the prevalence rate of 1 in 32 Somali children with autism spectrum disorder (ASD) in Minneapolis.  While the report says that Somali children with ASD are more likely to have cognitive disabilities and more significant disabilities than all other racial groups, the data say that the rate of autism in the Somali population is about the same as in the white population (1 in 32 vs. 1 in 36).  The report also states that children who have autism aren’t identified as early as they could be.

“This new data from the CDC indicate potentially higher rates of autism spectrum disorders in distinct populations than the national numbers, clearly show that more research is needed to better understand autism, and again makes the case that additional funds must be made available for services and supports for children with autism and their families.

“The CDC continues to do important work in this area, shining a bright light on what families associated with The Arc and our chapters experience everyday – autism spectrum disorders touch so many people, of all cultures and backgrounds, and we must do more to support them to achieve their goals and to foster an inclusive society.  The Arc is committed to families of all backgrounds in our efforts to serve and support people with disabilities, through our network of 700 chapters across the country,” said Peter Berns, CEO of The Arc.

“About a third of individuals and families using advocacy services from The Arc Greater Twin Cities are from multicultural families,” said Kim Keprios, The Arc Greater Twin Cities’ chief executive officer.  “We have been working hard to make connections in the Somali community because we know Somali children who have autism are not being diagnosed as early as they could be and therefore not getting critical services. Anyone who might benefit from The Arc’s assistance in getting a diagnosis, receiving help with special education issues and more, is encouraged to call us at 952-920-0855 or visit www.arcgreatertwincities.org.”

“These data provide further evidence of the need for organizations like The Arc to continue advocating for policies and funding to ensure the needs of children with ASD and their families are being met,” said Steve Larson, senior policy director for The Arc Minnesota, the state office of The Arc in Minnesota.  “We were pleased that state elected officials approved new funding in 2013 to help children with ASD improve their communication skills and increase their inclusion in their communities, and we strongly supported passage of legislation this year requiring health insurance plans to cover needed behavior therapies for these children.  We will continue to work to make further progress in serving all Minnesotans diagnosed with ASD.”

Amy Hewitt, director of the University of Minnesota Research and Training Center on Community Living and primary investigator on the project, is also a member of the board of directors of both The Arc Minnesota and The Arc Greater Twin Cities.

The Arc’s School-to-Community Transition Initiative Expands With the Help of The AT&T Foundation

Through funding from the AT&T Foundation, The Arc’s School-to-Community Transition Initiative will be supporting five additional chapters of The Arc with sub-grants for new transition projects through 2014. These projects will connect individuals with intellectual and developmental disabilities (I/DD) with paid employment opportunities and/or a degree/certificate-earning postsecondary education program.

“We are thrilled to be expanding our School-to-Community Transition Initiative, and are grateful to The AT&T Foundation for their generous support.  For individuals with intellectual and developmental disabilities and their families, the transition from high school can be a scary and stressful time. Since our School-to-Community Transition Initiative launched in 2009, we have been able to support more than 1300 individuals as they approached this exciting milestone. We look forward to arming more individuals with the skills and confidence they need to succeed whether their next step is post-secondary education or employment,” said Peter V. Berns, CEO of The Arc.

Since 2009, over 50 Chapters in The Arc have participated in this initiative to further enhance their work with youth with I/DD, ages 12-23, that receive special education services and are preparing to transition from school to adult life. Outcomes for these programs include development of comprehensive transition plans while students are still in high school and connecting transitioning individuals with employment and post-secondary education opportunities. Projects include elements of inter-agency collaboration, a focus on enhancing community connections, and self-determination to help them successfully meet these objectives.

Recipients of the five new sub-grants are:

The Arc Calls on Department of Justice to End Tactics and Thoroughly Investigate Allegations that People with Disabilities Were Exploited in Sting Operations

After reading news reports of the Bureau of Alcohol, Tobacco, and Firearms (ATF) agents engaging in entrapment and exploitation designed to prey on the intellectual disability of individuals whom ATF agents sought to engage in their stings, some of whom have been prosecuted for their participation, The Arc is calling on the U.S. Department of Justice to take action.

In a letter sent to U.S. Attorney General Eric Holder yesterday, The Arc outlined the following action items to take in the wake of the scandal:

  • Establish an immediate investigation into the ATF practices which led to the news reports;
  • Ensure an immediate halt to all practices which exploit people based on their intellectual and/or developmental disability (I/DD);
  • Require ATF to suspend any ongoing investigations that are targeting people known to have I/DD;
  • Develop and implement a training program for ATF agents nationwide that provides specific information on how to identify persons with I/DD, and establish protocols to ensure they are no longer targeted or sought out as informants due to having a disability;
  • Encourage the Inspector General to escalate the investigation to cover ATF more broadly and bring the investigation to conclusion sooner rather than later; and
  • Petition the courts for equitable redress where people with intellectual disabilities are serving time for crimes initiated or furthered by the actions of ATF agents.

“Without a firm repudiation of the reported behaviors by ATF agents, the public and the disability community, in particular, will lose faith in a department which it trusts to protect its rights, not to entice vulnerable people into legal trouble.  The Arc is committed to working closely with the appropriate federal agencies to inform protocol and training development for ATF agents, and be of assistance on this important matter as needed,” said Peter Berns, CEO of The Arc.

The Arc has worked extensively over the years with many staff and officials in the U.S. Department of Justice (DOJ) to ensure that the rights of people with I/DD are protected throughout mainstream community life and within the criminal justice system.  We have seen remarkable progress in implementation of the Americans with Disabilities Act and the U.S. Supreme Court’s Olmstead decision, particularly in recent years.  DOJ has continued its commitment to these issues, most recently awarding The Arc a grant to create a National Center on Criminal Justice and Disability to bridge the gap between the disability and law enforcement communities, creating access to justice and safer lives for people with I/DD.

Below is the entire letter to Attorney General Holder.

 

The Honorable Eric Holder

Attorney General of the United States

U.S. Department of Justice

950 Pennsylvania Avenue, NW

Washington, DC 20530-0001

 

December 12, 2013

 

Dear Mr. Attorney General:

The Arc of the United States has worked extensively over the years with many staff and officials in the U.S. Department of Justice to ensure that the rights of people with intellectual and developmental disabilities (I/DD) are protected throughout mainstream community life and within the criminal justice system.  We have known very competent, inspiring, and visionary DOJ employees working over many decades to ensure full participation for people who face significant barriers in everyday life.  We have seen remarkable progress in implementation of the Americans with Disabilities Act and the U.S. Supreme Court’s Olmstead decision, particularly in recent years.  We are now looking forward as we begin an exciting new chapter with DOJ start-up funding of a new National Center on Criminal Justice and Disability.

With DOJ’s commitment to the protection of rights of people with disabilities, we were appalled to read news reports of the Bureau of Alcohol, Tobacco, and Firearms (ATF) agents engaging in entrapment and exploitation designed to prey on the intellectual disability of individuals whom ATF agents sought to engage in their stings, some of whom have been prosecuted for their participation.  The targeting and use of people in this way, exploiting their disabilities, flies in the face of the excellent work of the Civil Rights division in pursuing full implementation of the Americans with Disabilities Act and the Olmstead decision.  This reported behavior, if true, by a federal department charged with protecting the rights of people with disabilities must not be allowed to continue.

While this information is appalling, unfortunately, it is not surprising to The Arc.  This type of injustice against people with I/DD occurs more often than the general public realizes. Individuals with I/DD are over represented in the criminal justice system and often used by other criminals without I/DD to carry out criminal activity. They typically have limited, if any, understanding about their involvement in a crime or consequences of being involved in a crime.  With few options for or opportunities to build safe relationships, their strong need to be accepted by peers in their own communities can create a unique vulnerability that people without I/DD do not experience.

If the media stories about the ATF are based in truth at all, we believe that the harm done to individuals by agencies of their government is so egregious that the following actions are needed immediately:

  • Establish an immediate investigation into the ATF practices which led to the news reports;
  • Ensure an immediate halt to all practices which exploit people based on their intellectual and/or developmental disability;
  • Require ATF to suspend any ongoing investigations that are targeting people known to have I/DD;
  • Develop and implement a training program for ATF agents nationwide that provides specific information on how to identify persons with I/DD, and establish protocols to ensure they are no longer targeted or sought out as informants due to having a disability;
  • Encourage the Inspector General to escalate the investigation to cover ATF more broadly and bring the investigation to conclusion sooner rather than later; and
  • Petition the courts for equitable redress where people with intellectual disabilities are serving time for crimes initiated or furthered by the actions of ATF agents.

Without a firm repudiation of the reported behaviors by ATF agents, the public and the disability community, in particular, will lose faith in a department which it trusts to protect its rights, not to entice vulnerable people into legal trouble.  The Arc is committed to working closely with the appropriate federal agencies to inform protocol and training development for ATF agents, and be of assistance on this important matter as needed. The goal of The Arc’s National Center on Criminal Justice and Disability is to bridge the gap between the disability and law enforcement communities, creating access to justice and safer lives for people with I/DD.  We stand ready to assist you in addressing these issues.

 

Sincerely,

 

Peter V. Berns

Chief Executive Officer, The Arc

 

cc: Cecilia Munoz, Assistant to the President and Director of the Domestic Policy Council

 

 

The Arc’s Statement on The Bipartisan Budget Act of 2013

The Arc released the following statement in response to Congressional leaders reaching a budget agreement negotiated by Senate Budget Chairman Patty Murray and House Budget Chairman Paul Ryan.  The Bipartisan Budget Act of 2013 would set discretionary spending for the current fiscal year at $1.012 trillion (about halfway between the Senate budget level of $1.058 trillion and the House budget level of $967 billion).

This agreement will help preserve programs that individuals with intellectual and developmental disabilities (I/DD) rely on, restore order to the federal budget and appropriations process, and reduce the deficit by between $20 and $23 billion. Additionally the agreement provides $63 billion in sequester relief over two years, that will be split equally between defense and non-defense programs, which will prevent further cuts to important programs.

“While The Arc is pleased that the budget agreement did not make major changes to our lifeline programs including Social Security, Medicaid, and Medicare, we are concerned about what appears to be the expansion of the state Medicaid agencies’ ability to recoup costs from settlements from Medicaid beneficiaries.  This could affect payments owed to individuals and families who have been harmed, received compensation, and depend on the compensation to pay for expenses beyond what Medicaid covers.  Allowing a state Medicaid agency to recover ‘any payments’ by a third party with legal liability (rather than just those payments for health care items and services, as under current law) would leave beneficiaries without coverage for other basic necessities,” said Peter V. Berns, CEO of The Arc.

Diagnosing Dementia in People with I/DD Difficult

HealthMeetStudies have shown that individuals with intellectual disabilities are living longer these days with many living well into their 50’s and 60’s and beyond.  This is most likely due to new medical advances and educational programs that help empower individuals to live healthier lifestyles.  While this is remarkable news, it is also directly correlated to the increased rate of dementia in individuals with I/DD.  While most of the general population develops Alzheimer’s after the age of 65, many individuals with I/DD (especially Down syndrome) are more likely to develop Alzheimer’s earlier on in life, which is called Early-Onset Alzheimer’s.  Some may even develop it as early as their forties.

Individuals with Down syndrome are at a higher risk than other individuals with disabilities for developing dementia.  As we know, individuals with Down syndrome have an extra copy of the chromosome 21.  This specific chromosome contains a gene that produces a protein that can cause brain cell damage.  Since these individuals have an extra copy of this gene they are producing more of this harmful protein in their bodies.  Studies have shown that almost all individuals with Down syndrome will develop the same changes in the brain that are associated with dementia; however not everyone will develop the symptoms of the disease.

Diagnosing dementia in an individual with I/DD can also be a difficult situation because many individuals may have trouble answering the testing questions that could be used to diagnose it. There are also few other assessment tools developed for individuals with I/DD.  In addition, some behavioral issues that individuals with I/DD can have may also be confused with signs for dementia when the issue is rooted in another problem. Starting to rule out all other possible options for the change in the individual’s behavior is a good start to determine what the real concern is.

We recently talked to The Arc’s Board President, Nancy Webster, who has had some personal connections with dementia in her family, too.  Nancy’s concern is that families don’t know where to turn to get information on dementia, what signs to look for, and how to get the appropriate testing.  As caregivers and family members with an individual with a disability, it is important to be aware of the individual’s whole situation to better advocate for their needs.  Nancy believes “this advocacy is not solely on The Arc and its members, and on families, but also on general practitioners too – as they are the first line of people who tend to see our population”.  Nancy’s hope is that through The Arc’s HealthMeet project, The Arc will become a resource for this topic to help families and caregivers find the information and supports that they need to better treat this disease, and once diagnosed learn how to cope and minimize the effects of dementia as best possible.

For more resources and webinars relating to dementia, check out the resources and archived webinar page on The Arc’s HealthMeet site.  Don’t forget to sign up for our upcoming webinar focusing on Understanding Behavioral Changes in Adults with IDD and Dementia.

Disability Case at the U.S. Supreme Court – What You Need to Know

Supreme Court of the United StatesEarlier this year, the U.S. Supreme Court agreed to hear Hall v. Florida, a death penalty case concerning the definition of “mental retardation” (or intellectual disability (ID) as it is now called) that states may use in deciding whether an individual with that disability is protected by the Court’s decision in Atkins v. Virginia. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional.

Numerous expert evaluations have documented Hall’s disability.  One psychologist’s examination found organic brain dysfunction and severe cognitive impairment, possibly due to repeated head trauma; neuropsychological testing showing severe brain impairment.  Another psychiatrist found that Hall is chronically psychotic; that he suffered violent child abuse; has organic brain damage and is paranoid. The lower court records include findings of severe and violent abuse of Hall during his childhood.

The Hall case is the first case the Supreme Court has taken on the issue of the death penalty for defendants with ID since the Atkins decision, which indicates that there could be a further clarification of states’ responsibilities under that decision.  Specifically, the Hall case centers on whether the state may establish a hardline ceiling on IQ, refusing to consider whether anyone with an IQ above that level may actually have ID (despite the fact that such a ceiling violates the nature of the tests involved and the professional judgment of the diagnostician, among other things).  In Hall, the Court has been asked to address Florida’s decision to draw the line at an IQ of 70.

The Arc strongly believes that every individual with ID should be protected from the death penalty and applauds the Court’s decision to hear this case.  In the past, The Arc has participated in a number of cases on this issue before the Supreme Court including Atkins v. Virginia.  Participating in an amicus (friend-of-the-court) brief in the Atkins decision, The Arc’s  brief was cited by the Justices in support of its ruling that the Constitution protects all defendants with ID.  Since 2002, The Arc’s advocates have been actively involved in the implementation of the Atkins decision in the Federal and State courts across the country.

The Hall v. Florida case is not the only case pertaining to this issue in the news right now. Earlier this year, Warren Hill’s appeal to the U.S. Supreme Court to halt his execution because he has ID was denied.  Hill’s lawyers filed a petition directly to the Supreme Court, stating that they had evidence proving Hill has ID.  However, in Georgia (where Hill was convicted), ID must be proven by the defendant “beyond a reasonable doubt,” the strictest standard in the country.

Many people in the disability community share The Arc’s belief that states should not be allowed to create a stricter or more limited definition of ID than the professionally accepted clinical definition of ID. To do otherwise allows the states to execute some people with ID while protecting others. This approach violates the intent of the Atkins decision.

The Arc will be closely following Hall v. Florida as it moves through the U.S. Supreme Court in 2014.

A Chapter of The Arc Promoting Health and Nutrition in Schenectady County, New York

Know Grow Eat participants A few years ago, Schenectady County Public Health Services and Schenectady Arc formed a unique partnership to address the high rates of chronic disease and obesity among people with I/DD in Schenectady County through the Strategic Alliance for Health. Schenectady Arc a  provider of residential, vocational, clinical, and adult day services in New York State’s Capital Region, recognized that among its 1,480 participants, nearly 10 percent were diagnosed with cardiovascular disease, obesity, or diabetes and wanted to do something to address the needs of those they served.

While nationally-based research showed individuals with I/DD were more prone to incidence of chronic disease, Schenectady Arc had confidence that they could help their participants by improving their diet and educating them about healthy eating habits. Further research found that children who participated in a “seed to table” nutrition education program tended to increase their consumption of fruits and vegetables. Through this program, children participated in a variety of regularly scheduled activities such as vegetable taste-testing, hands-on gardening, and recipe preparation. Based on these studies, Schenectady Arc created Know, Grow and Eat Your Vegetables, a garden-based nutrition education program for people with I/DD. The agency’s horticulture coordinator oversaw the new program which was located at Schenectady Arc’s commercial-sized greenhouse in Rotterdam, NY. The coordinator assessed awareness of and preference for 15 vegetable types and, worked alongside 70 participants to plant and cultivate seedlings.

Know Grow Eat participantsWhile the vegetables were being grown, nutrition educators from Cornell Cooperative Extension of Schenectady County (CCESC) conducted a six-week program adapted to the specific needs of individuals with I/DD. This training provided participants and staff with strategies regarding healthy meal preparation practices and how to incorporate vegetables into daily meals and snacks.

This remarkable program continues to flourish and provide nutrition and education for individuals with I/DD in Schenectady County. Since the program began, participants have harvested approximately 1,000 vegetables. Vegetable packets, along with recipes, were distributed for consumption in group home or family home settings. Last year, this program was named by The National Association of County and City Health Officials (NACCHO) as a model practice and an implementation guide can be found on the U.S. Centers for Disease Control and Prevention website! Also, during The Arc’s national convention, Schenectady Arc and NACCHO presented together, giving chapters of The Arc the opportunity to learn from the success of this program.

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.

 

Men, Get Proactive About Your Health

Women’s health issues are highly publicized. There are information, brochures and events relating to breast cancer awareness all over the country. However, you never hear as much information regarding men’s health issues. This is not to say that men’s issues are less important because they definitely are not.  Many studies have shown that men are less likely to go to doctor’s visits or follow up on concerns they are having in their bodies. More concerning is adding that to the fact that we have also learned that individuals with disabilities in general go to the doctor less than individuals without disabilities. Therefore, men with disabilities are at even more of a risk for not receiving the necessary preventative check-ups and screenings needed.

Statistics say that 1 in 6 men will be diagnosed with prostate cancer in their life. Prostate cancer is the 2nd leading cause of cancer death in men (behind lung cancer). However, it is also very curable. In fact, most men who are diagnosed with prostate cancer will not die from it if it is caught early on. The key is catching it early on. It takes about a minute to receive a prostate exam and doing this annually could be help detect abnormalities while they are still treatable.

Just like prostate cancer, testicular cancer is also very treatable if diagnosed early too. Information has been accumulating from recent studies that show an association between Down Syndrome and testicular germ cell tumors. As other malformations can occur in organs of individuals with Down Syndrome, the testicles can also develop abnormally, which can produce conditions that are conducive to creating germ cell tumor growth.

Educating self-advocates and their caregivers with information like this will help to increase awareness and raise rates of early detection for cancer in men. Help ensure the men that you care for receive the proper information and receive annual cancer screenings. A few minutes a year to get screened could make a huge difference. For more information relating to men’s health, check out the CDC’s Men’s Health page.