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Empower Yourself, Empower Someone Else

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 (, 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

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

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

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

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

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.