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The Arc of Connecticut Applauds Senator Murphy’s Quick Action on Abuse and Neglect of Individuals With IDD, Urges Broad Investigation

/in /by The Arc

Hartford, CT – The Hartford Courant’s series on deaths, abuse, and neglect of people with intellectual and developmental disabilities (IDD) sheds light on the need for more oversight and resources for the state’s system. Incidents occurred throughout the sector, from the last remaining institution in Southbury, to state and private run homes, to family settings. On the heels of the paper’s reporting, U.S. Senator Chris Murphy has called for a federal investigation into deaths at federally financed facilities. The Arc supports an investigation, but one that looks at all settings of care because unfortunately, deaths due to abuse and neglect occur across the system, not just in private care settings.

“We applaud Senator Murphy’s swift call for an investigation into these incidents across our system of care for people with IDD, and we look forward to working with him to improve the quality of life for people with disabilities in Connecticut. Any investigation has to go further than just looking at privately run settings – the data show that in Connecticut, these cases occurred in all settings that people with IDD live in, from our institution to state run facilities to privately run homes to family settings. In order to make real progress in preventing deaths caused by abuse and neglect, we must have a broad conversation that looks at all of these settings, and takes a hard look at what we are investing in our fellow Connecticut residents.

“Budget cuts aren’t just about dollars, cents, and deficit projections – the lives of people are at stake. When we have a system that provides wages that don’t reflect the importance of the work carried out, and training that doesn’t prepare people for the situations they will face, we are putting lives at risk. There are many facets to this problem, and The Arc will continue to work with families, other organizations serving people with disabilities, Senator Murphy, and other stakeholders to end horrific mistreatment of people with IDD,” said Leslie Simoes, Executive Director of The Arc of Connecticut.

The Arc is eager to take a leadership role in making the system better for everyone we support including placing the investigations in the hands of an independent entity with power to require meaningful remedial relief and making the results of investigations public so that there is transparency in what is going on and how government is responding. Another systemic change would include providing families with copies of abuse investigations and the remedial recommendations; this is a huge longstanding deficiency in the investigations conducted by Office of Protection and Advocacy and The Department of Developmental Services (DDS) that has gone unchanged for far too long.

Contact: Leslie Simoes, Executive Director, The Arc Connecticut, lsimoes@arcofct.org, (860) 246-6400 x101

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The Arc Joins Million Hearts™ to Help Save Lives From Heart Attacks and Strokes

/in /by The Arc

Heart attacks and strokes are the 1st and 4th leading causes of death in the United States each year. Everyday 2,200 people die from cardiovascular disease in America. In addition heart disease and stroke are also among the leading causes of disability in our country, with more than 3 million people reporting serious illness or a decrease in the quality of life afterwards.

Many people may not even be aware that they are at a high risk for a heart attack or stroke. The Arc has taken the pledge to help increase awareness of cardiovascular disease by partnering up with Million Hearts. Million Hearts was created in attempt to prevent 1 million heart attacks and strokes over the next five years. The Centers for Disease Control and Prevention (CDC) and Centers for Medicare and Medicaid Services are co-leading this initiative, which hopes to raise awareness by educating people on the associated risks of heart attacks and strokes, encouraging exercise, and maintaining a healthy diet to reduce cholesterol and sodium intake. By learning the “ABCs” of preventing heart disease and stroke (Aspirin Therapy, Blood pressure control, Cholesterol management and Smoking cessation) we can empower individuals to make healthier choices to reduce these occurrences. Million Hearts is bringing together a variety of public and private sectors to help spread their educational campaign across the country and find innovative ways to use technology and information sharing to promote these efforts.

Individuals with an intellectual or developmental disability are at an even higher risk than the rest of the population for heart attacks and stroke. It is shown that individuals with IDD are less likely to maintain routine check-ups, receive the medical attention or medicines they need to sustain their health or have enough health knowledge to be aware of their own health disparities to make healthier choices. The Arc’s HealthMeet project is helping to educate and promote healthy behaviors, by providing free health assessments, educational webinars, trainings, and activities to increase fitness in hopes to create a change in individual’s lifestyles leading to fewer instances of heart attacks and strokes. Log on to The Arc’s HealthMeet page on our website to learn more about the project and access health resources that can help you put your heart’s health into your own hands.

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Helping Dreams Come True While Helping the Environment

/in /by The Arc

By Caleb Wilson, Vocational Director, The Arc of Clarion and Venango Counties Inc.

A valuable lesson we have learned through our efforts of connecting individuals with intellectual and developmental disabilities to community-based employment opportunities is that the idea of creating a business around someone’s interests and abilities is not commonplace. Some individuals have always dreamed of being their own boss and owning their own business. Keeping that in mind, The Arc of Clarion and Venango Counties started assisting individuals in creating their “Dream Job” of owning their own business.

The Arc and Walmart Foundation’s eXplore eRecycling Initiative has made it possible for us to assist a small group of individuals experiencing disabilities with starting a business that helps residents and community businesses/organizations recycle their old electronics in an environmentally sound way. From the development of the business plan and policies, The Arc eRecycling of Clarion and Venango Counties has truly been an effort led by these employees.

To comply with Pennsylvania’s Covered Device Act, we have held two free e-waste drop off days in both Clarion and Venango Counties. These events brought in over 4,000 pounds of old electronics that do not work or that people simply do not wish to own anymore.   Additionally, several local city offices have started referring their residents to The Arc eRecycling for their needs and this has given us the opportunity to recycle hundreds of computer monitors and televisions. With a motto of “We take anything with a plug” each day customers have the ability to drop off any electronic. In order to meet the interests of some employees, The Arc eRecycling of Clarion and Venango Counties started creating catalogs to resell old electronics that are still in working condition. This not only allows the business to help the environment but to help individuals find reasonable priced electronics.

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Empower Yourself, Empower Someone Else

/in /by The Arc

Twenty-six years ago we successfully advocated for March to be declared National Developmental Disabilities Awareness Month. And, there is no doubt that we have made tremendous strides to promote and protect the rights of people with IDD to live, learn, work and play as valued and contributing members of their communities, the real strength of our message comes straight from the individuals we serve. No matter how effective our organization’s advocacy efforts may be, no one is as powerful an advocate for people with IDD as a person with IDD.

So, this year during March, The Arc would like to empower all individuals with IDD to appoint themselves as their own advocates. As a self-advocate, you can help take the movement for people with IDD to others in your community. It can start with a simple question. This March, ask everyone you meet: “Did you know that March is Developmental Disabilities Awareness Month?” That may spark a conversation – a teachable moment – when you can share your experience living with a disability with someone else.

All month, we’ll be working to raise awareness about the issues important to people with IDD. As a self-advocate, you can help us “turn up the volume.” Take this opportunity to empower yourself and empower someone else with some of these simple suggestions:

Follow the conversation on Facebook (facebook.com/thearcus), Twitter (@thearcus) and here on our blog and be sure to chime in when you have something to say using the hashtag #DDAware.

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The Arc Responds to Death of Maryland Man With Down Syndrome

/in /by The Arc

Washington, DC – The Arc is deeply saddened and shocked by the death of Robert Ethan Saylor, a young man with Down syndrome whose death last month was ruled a homicide by a Maryland court late last week. Reports state that when Saylor refused to leave a movie theater, he was pinned face-down on the ground by three off-duty Frederick County sheriff’s deputies who were working security jobs nearby. Shortly after this incident, Saylor was pronounced dead at a local hospital.

The Arc believes that all law enforcement professionals should receive crisis intervention training to help them work with individuals with disabilities who find themselves in highly charged emotional situations like Robert did. There are many ways to help a person with a disability who is upset, scared, anxious, and feeling threatened. Examples include: learning to recognize the signs that the person with the disability is becoming upset; learning how to evaluate the situation and understand what is provoking the person; learning to communicate in a non-threatening way and to talk the person down or “de-escalate” the situation, and learning how to approach a person with a disability in a way that does not further antagonize them. Finally, The Arc believes that all law enforcement personnel must learn that prone restraint, or taking a person to the ground and immobilizing them face down, is a very dangerous technique that can lead to tragic outcomes.

“Sadly, this tragedy could have been prevented. Sometimes there are circumstances that present unique challenges when it comes to dealing with individuals with intellectual and developmental disabilities, especially in high stress situations. With proper training these officers would have realized there was a better way to work with Robert, as opposed to simply using force – an extreme and unnecessary reaction. This is a moment for us not only to mourn, but we must also learn from this tragedy and encourage proper training in our police departments,” said Kate Fialkowski, Executive Director, The Arc of Maryland.

“We would like to extend our deep sympathy to Robert Saylor’s family. No one should ever die under such circumstances. This is particularly true for someone at the start of adulthood, so full of life, and with so much more time ahead of him to experience all the joys of having a full adult life,” said Joanna Pierson, Executive Director, The Arc of Frederick County.

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Progress in Affordable Housing for People With Disabilities: The Arc Applauds New Grants in 13 States

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the U.S. Department of Housing and Urban Development’s (HUD) announcement of the FY 2012 awards for the new Section 811 Supportive Housing for Persons with Disabilities Project Rental Assistance (PRA) Demonstration. The new Section 811 PRA Demonstration is designed to assist state housing agencies to expand integrated supportive housing opportunities for people with the most significant and long term disabilities, and was the centerpiece of the Frank Melville Supportive Housing Investment Act of 2010. A total of 13 states will receive $98 million to produce 3,530 units of community-based supportive housing for people with disabilities.

“Like all Americans, individuals with intellectual and developmental disabilities deserve the opportunity to live independently in the community with their peers. Unfortunately, low-income people with disabilities face a severe shortage of accessible and affordable housing. The money being awarded by HUD will allow thousands of individuals to live in the community, where they belong. For many, this announcement is the difference between life in an institution and inclusion in their communities,” said Peter V. Berns, CEO of The Arc.

Section 811 is the only HUD program dedicated to producing affordable, accessible housing for non-elderly, very low-income people with significant disabilities. The Frank Melville Supportive Housing Investment Act of 2010 modernized Section 811 to make the program more efficient and effective. Today’s awards are the first ever under the new Section 811 PRA Demonstration model, which will create integrated housing linked with community-based services for low-income adults with significant disabilities. States receiving awards are: California, Delaware, Georgia, Illinois, Louisiana, Maryland, Massachusetts, Minnesota, Montana, North Carolina, Pennsylvania, Texas, and Washington.

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Love Is in the Air: Media Profiles People With Disabilities in Marriage and Parenting

/in /by The Arc

Washington, DC – As we approach Valentine’s Day, today two major media outlets released heartwarming profiles of people with intellectual and developmental disabilities (IDD) achieving their dreams – falling in love, getting married, and being a parent.

Today, the Washington Post released a lengthy profile of Bill Ott and Shelley Belgard, a couple from Maryland who were married in September after a long courtship. Bill and Shelley met as teenagers, dated, and re-connected later in life. Bill has Down syndrome and Shelley has hydrocephalus. But no disability could keep them apart, and today, Bill and Shelley are married, living independently with supports, working in the community, and enjoying their lives together.

“Bill’s and Shelley’s path to marriage is not unlike many others who fall in love, lose touch as life takes its turns, and reconnect later in life when the time is right. They have a love that is as true as anyone else’s, and with support from family and the community, they are living their dream. The reality is not everyone has access to all the support and resources that Shelley and Bill have had, but when people with disabilities are given the tools they need to succeed, look at what is possible – a life like yours and mine,” said Peter Berns, CEO of The Arc.

NPR also ran an interview this morning with Bonnie and Myra Brown, a mother and daughter from Lansdowne, Pennsylvania. Bonnie is a single mother raising 15 year old Myra, and Bonnie has an intellectual disability. Myra is grateful for her mother’s love and guidance, and the interview with them is so moving that the radio host is heard choking up.

“Raising a child is a wonderful experience that comes with challenges for any parent. Bonnie and Myra’s touching story is proof that people with intellectual and developmental disabilities can be successful parents when provided proper supports, and they should have the same right to parent as others do,” said Berns.

Unfortunately, there is a dark history of discrimination toward individuals with IDD in our nation and around the world. This includes the denial of rights and opportunities to have relationships, get married and have their own children. Earlier this year, The National Council on Disability released a very telling report on the rights of parents who have disabilities. Four million parents—6 percent of American mothers and fathers—have a disability. The rate at which children are taken from parents who have intellectual and developmental disabilities is between 40% and 80%. This report uncovers the heartbreaking reality for too many families across the country – parents with disabilities are treated unjustly when it comes to their rights as parents, and far too many families are broken apart by outdated and discriminatory practices.

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The Arc of Maryland Responds to Abuse Case Involving a Man With an Intellectual Disability

/in /by The Arc

Annapolis, MD – The Arc of Maryland released the following statement in response to an abuse case involving a man with intellectual disabilities (ID) in Columbia, Maryland. Earlier this week, a house manager at a group home for individuals with ID was charged with multiple counts of assault and reckless endangerment for physically abusing a resident in the house where she worked. The abuse of the resident was caught on film and has since been posted online on a number of websites.

“For over 60 years, The Arc of Maryland has advocated for human and civil rights for individuals with intellectual and developmental disabilities and their families. With this lens we must comment on the recent release of a video which depicts a staff member at a privately-operated group home in Maryland physically abusing residents. We are profoundly disturbed by the event and the video. This is obviously heinous and unacceptable behavior. Our primary thoughts and concerns are for the individuals and families victimized in this situation. We commend the Howard County police department for their rapid response upon learning of the situation,” said Carol Fried, President, The Arc of Maryland and Kate Fialkowski, Executive Director, The Arc of Maryland.

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Get the Facts on Women With IDD and Cervical and Breast Cancer Screening

/in /by The Arc

Caregivers Report Many Barriers to Life Saving Screenings

A recent study in the journal Intellectual and Developmental Disabilities titled, Family Caregivers’ Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disability found that family caregivers often did not realize the importance of regular cervical and breast cancer screenings for women with IDD. These lifesaving screenings are important for ALL women, and this study clearly shows that we need to do more to increase awareness and reduce barriers to breast and cervical cancer screening for women with disabilities.

Through the Arc’s HealthMeet® project, we will survey women with IDD about their frequency of breast and cervical screening as part of the larger health assessments that will be conducted in 2013 in 5 states across the country. The data collected during the health assessments will further inform the disability and health care field about women’s access to the these critical screenings. We must do better to protect the health and lives of women with IDD.

For more information about breast and cervical cancer in women with disabilities, visit the CDC’s National Center on Birth Defects and Developmental Disabilities page for women with disabilities.

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My Sister Was Bullied by a Radio DJ

/in /by The Arc

Update: Since this blog post was written, the DJ made an on-air apology and announced that his station will be working with local developmental disabilities organizations on an awareness campaign.

By Alex Standiford

Hello, my name is Alex, and I have an older sister, named Kellie. Kellie is 30 years old, and can easily be described as the most loving, caring, and wonderful person I have ever met. She sees the world very differently than most of us– without cynicism and with complete and utter hope. To Kellie, each and every person is good, unless proven otherwise. Anyone who visits her, no matter how frequently, is always greeted with a “Hi!,” an endless, gut wrenching hug, and a sincere declaration of love. My sister is truly a beautiful person in both body and spirit whose outlook on life I can only hope to someday attain. In many ways, I look up to her. My sister passionately loves music and dancing and growing up I remember countless times that I would open her bedroom door to find her dancing and singing at the top of her lungs in front of the mirror.

You may wonder what makes Kellie so special, what makes her story different from any other big sister you or someone you know may have? Well, Kellie happens to have Down syndrome. If you know anything about Down syndrome you know that it is something that unique people, like my sister Kellie, are born with and will live with for their entire lives. Kellie, despite some hardships and challenges she has faced, has always persevered and been positive, friendly, and happy just being who she is.

On Monday, January 21st, my sister was faced with yet another instance of feeling like she was different, or that the fact that she had Down syndrome made her somehow less than other people. On the 21st she accidentally phoned in to Mo’s Radio Show on the Q92 Radio Station based out of Alliance, Ohio, where her manner of speaking was rudely scrutinized and unapologetically berated by both Mo and countless individuals who were “tuned in” at the time. Mo opportunistically exploited my sister’s imperfect speech through his radio show and made her an object of amusement for all of his listeners– including people that knew Kellie.

“No, say it real slowly. I want to try to figure this out. It’s a little game.”

Anyone would have been embarrassed to be both accidentally aired on the radio and ridiculed for something which one has no control over. What Mo and countless listeners did not consider is what this experience felt like for Kellie. Kellie is self-conscious about her Down syndrome and has expressed her insecurity throughout her life. Sometimes, she will ask, “Why do I look different?,” and other times, “Why do I talk funny?” When it comes with dealing with tough social situations, such as speaking with an unknown person when she accidentally dials the wrong number, she will fumble over her words out of general embarrassment that all people feel in such instances. Most of the time, people will understand, at least to some small degree, and will deal with the situation with as much compassion and tact as possible.

When it comes to dealing with difficult emotional situations, Kellie processes her feelings very outwardly. Everyone has an emotional range, and Kellie has the capacity to become so hurt that she will cry for days. Being the epitome of an optimist Kellie trusts and assumes that everyone is trustworthy and kind. When someone breaks that trust, it hurts her in a way that is far deeper and more powerful than I could ever understand. I imagine it feels like the most intense betrayal or the greatest heart break I could ever experience. It is earth-shattering.

Knowing this, now considering the reality of what happened that January afternoon, try to understand the emotional pain, heartbreak, and confusion that my sister had to feel for the sake of public entertainment. Undoubtedly Mo and the radio studio will continue to hold on to the argument that “the ‘host’ wouldn’t have aired the call had he known the situation in advance,“ that Mo “would NEVER do this with any sense of malice,” but what other sense could there have been in this situation? Mo himself stated, “You don’t know who Mo is? Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.” It was quite clear that Mo knew what he was saying and doing was offensive and inappropriate, but that did not stop him.

“You don’t know who Mo is?”

“No.”

“Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.”

Whether or not the call was made from an individual with Down Syndrome, an individual with a speech impediment, or some foolish prankster looking for attention, the direction and focus of the aired conversations were centered on something that is hurtful and demeaning to numerous people. Essentially, it was entirely ignorant to air the call into live radio at all. The situation would have never escalated had the “host” simply said to Kellie, “I’m sorry, I can’t understand what you’re saying,” or “This is Q92, I think you have the wrong number.” Whether intentional or not, this experience was real and it caused a great deal of hurt to many people, not the least of all to Kellie and it should have never turned out this way.

Luckily for Kellie, she has a strong, supportive family to help her through this time. What I don’t want to see happen is Mo or another jockey like him believe it is appropriate when “somebody calls my show with a little speech impediment– I have a little fun.” The next child or adult to become the focus of this cruel bullying may not be as lucky as Kellie. It could easily be someone who is defenseless to the act, someone who has no one to stand up for them—a child aired mistakenly on the radio who becomes an object of mockery and bullying at school or an adult with a developmental disability who lives alone in a group home. It is never appropriate to make someone who is different from you a bull’s eye on the target of your “humor”. We try to teach our children tolerance and love, but then what hope can we have for them to adopt this mentality when they can hear and see the adults around them blatantly ignoring the lessons they teach.

View the complete radio transcript or view Kelie’s Story on Facebook.