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Disability Advocates and Professionals in New Orleans for The Arc’s National Convention

/in /by The Arc

2014 Convention ArtworkNew Orleans, LA – Next week, The Arc’s National Convention will kick off in New Orleans, Louisiana with more than 800 disability advocates, professionals, and people with intellectual and developmental disabilities (IDD) coming together to learn, forge connections, and energize the disability movement. This year’s theme focuses on three key goals– To Network, To Improve, and To Lead, three simple ideas that embody what The Arc stands for. This year’s event will have a strong focus on criminal justice issues and the IDD population.

“The Arc’s convention is a once a year chance to bring our network of nearly 700 chapters, their members and professionals, and people with disabilities together for a unique experience. This year, in addition to our usual activities, we are turning a national spotlight to criminal justice and disability. The Arc has a long history of standing up for the rights of people with disabilities who find themselves involved in our legal system as victims, suspects, or offenders.

“We are thrilled to be honoring James Ellis, one of the leading lawyers in the disability community. Additionally, we are excited to have two award winning documentary film makers who will be exposing the difficulties facing children with intellectual disabilities involved in our criminal justice system,” said Peter Berns, CEO of The Arc.

This three day event, which will take place at the New Orleans Marriott from September 30 – October 2, will include:

  • a keynote address by award-winning author Ron Suskind, whose latest book, Life Animated, A Story of Sidekicks, Heroes and Autism shares his family’s 20 year journey with their youngest son Owen’s autism;
  • an exciting and inspirational presentation from Fred Maahs, Director of National Partnerships for Comcast Corporation and Vice President of Comcast Foundation, that touches on his personal story, his commitment to community service, and the benefits of corporate/nonprofit partnerships;
  • honoring Dr. David Braddock with The Arc’s President’s Award for his lifetime of work for individuals with disabilities including his invaluable research regarding long-term care, health promotion and disease prevention, and public policy toward disability;
  • a panel discussion with documentary film makers Karen Grau and Chip Warren of Calamari Productions, and a sneak peek at their latest film, Children of the Dumping Ground;
  • honoring James Ellis, one of the greatest legal minds in the disability community; and
  • an exciting event hosted by The Arc of Louisiana and The Arc Baton Rouge, which includes a second line parade down the Chartres Street to the Presbytere, and a scheduled guest appearance by Lt. Governor Jay Dardenne.

“We are excited to serve as the local host committee for The Arc’s national convention. With so many changes at the federal and state level including managed care, the CMS home and community based setting rule, and wage and hour issues; I think the timing of this event in New Orleans is ideal. My hope is with hundreds of advocates and the leading experts in the disability community in our backyard, we will push forward with the necessary conversations to continue to move our state in the right direction,” said Kelly Serrett, Executive Director of The Arc Louisiana.

“The Arc’s national convention is the premier event for disability advocates in our network, and we are thrilled to have everyone in New Orleans this year. Our program covers a number of key issues facing communities in Louisiana as well as nationally, from public policy to early intervention services for families with a loved one who has a disability. We are so pleased with the line-up of speakers that will be joining us, and look forward to showing our colleagues from across the country what our great state and the city of New Orleans has to offer,” said Barry Meyer, Executive Director of The Arc Baton Rouge.

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Yoga Benefits Everyone

/in /by The Arc

Exercising is a vital part of staying healthy. With so many different fitness fads and activities out there it’s hard to tell which ones actually produce real benefits and which ones aren’t worth your time.

While yoga has been around for quite a while now its popularity has grown significantly in past years. The general population seems to have decided that its results are worthwhile, but what kind of benefits does it have for individuals with disabilities?

Yoga is a combination of body and mind. It focuses on not only working your physical state, but your mental state as well by incorporating calming breathing and focusing techniques that most don’t even realize they are reaping the benefits from at the time. One of the best parts of yoga is that it is so easily adaptable to all different fitness levels, so individuals of all capabilities are able to participate at the same time (including individuals that use a wheelchair).

Holding the different poses, such as downward dog, cat, tree, etc., engage many different muscles at the same time to strengthen and stretch muscles all over giving you a total body workout. These strengthening activities, which help build muscle control and stability, are great for individuals with disabilities that can make them more prone to muscle weakness. The gradual building of muscle and flexibility overtime using your own body weight aids in reducing the risk of injuries associated with other activities involving heavy weights or machines. These moves and poses rotate joints through their full range of motion helping individuals with disabilities learn to concentrate on specific body parts to improve fine and gross motor skills. It also gets blood flowing throughout the entire body to improve circulation as well. This increased knowledge of balance and control will help with mobility, reducing falls, and hand/eye coordination. Being more aware and in tune with their bodies can help individuals feel more comfortable and confident in their own their own skin.

In addition, there are also many psychological improvements from yoga too. While yoga is an activity that is done individually going to yoga classes lets individuals be a part of a group of their peers without having the stress from other team sports where their individual performance is going to affect the teams’ outcome. Learning and mastering the different poses leads to a feeling of accomplishment and pride, thus increasing self-esteem levels. Yoga has also been shown to increase focus, concentration and decrease feelings of anxiety. The calming effects that yoga introduces on the body can even be used outside of the yoga classroom in everyday life to reduce negative behaviors. For example, the breathing techniques can be brought into play when individuals start getting angry, aggressive, or stressed to bring them back to a relaxed state.

Another great thing about yoga is that it doesn’t have to be done in a class. Yoga requires very little equipment and can be done almost anywhere – inside or outside, in the grass or beach, or in a yoga studio or your house. Videos that are adapted for individuals with disabilities can be found on NCHPAD’s website. Other resources and books can also be found online too for extra help and information. Yoga terms can be difficult to pronounce, so change the names of the different yoga poses around to make them easier to remember and support with sounds, phrases, etc. While yoga might not be the exercise of choice for everyone, there are many aspects of yoga that can have positive effects, both physically and mentally, for many individuals with disabilities.

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The Arc Weighs In on Dr. Phil Shows on the Case of Kelly Stapleton

/in , /by The Arc

Washington, DC – Last week, Dr. Phil aired two shows about the case of Kelly Stapleton, a mother from Michigan who attempted to take the life of her daughter, Issy, who has autism, and herself last year. The Arc released the following statement in response to the reporting done by the Dr. Phil Show.

“Kelly Stapleton’s failed attempt to take the life of her daughter, Issy, must be understood for exactly what it is – a crime of the worst magnitude – and her attempt to take her own life illustrates that likely she was experiencing a significant crisis in her own mental health. The act of a parent to kill or attempt to kill her own child is not a rational act, regardless of whether the child has a disability or how challenging the circumstances, and is never acceptable and offends our deepest values and sensibilities.

“There are, though, other lessons to be learned here. Unfortunately, the horrific story of the Stapletons shows what too many families across the country are facing – a failing system of supports and services for people with intellectual and developmental disabilities. The Stapletons were in a challenging situation and seeking help for their daughter so that she could continue to be with her family, attend school, and be a part of her community. If the system – in the end, the school district that rejected Issy’s inclusion for the school year – had not failed them, this family’s reality could have turned out very differently.

“Kelly’s actions are indefensible, and sensationalizing this family’s tragic story only hurts the public’s perception of autism. Issy’s voice, or the voice of a peer on the autism spectrum, should have been heard by the millions who tune in to Dr. Phil. His audience should have had the opportunity to learn from an individual with autism what it’s like to live with autism, and how services and supports can make a huge difference in their daily life. America needs to be woken up to this national crisis – the lack of access to services and supports for people with disabilities is an unacceptable reality and Issy and millions like her deserve much, much better,” said Peter Berns, CEO of The Arc.

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The Arc Commends Senator Tom Harkin’s 40 Years of Service

/in /by The Arc

Washington, DC – The Arc released the following statement after Senator Tom Harkin’s (D-IA) final Senate Committee Hearing on disability issues entitled “Fulfilling the Promise: Overcoming Persistent Barriers to Economic Self-Sufficiency for People with Disabilities”. Senator Harkin has been a powerful advocate for individuals with intellectual and developmental disabilities for almost four decades, serving in both the House of Representatives and the Senate.

“Today a legend in the disability community held what is likely his final Senate Committee hearing on disability issues, advocating for individuals with disabilities until the very end of his final term in Congress. Senator Harkin has been a longtime advocate for individuals with disabilities, supporting or spearheading all major disability legislation in the last 40 years. His final hearing focused on poverty, a huge problem facing many individuals with disabilities. This hearing, like so many before, highlighted one of the key issues facing people with disabilities, and challenged legislators to look for solutions.

“Senator Harkin is a hero to The Arc and our advocates across the country, and his legacy will live on. We thank him for his years of service, and friendship to our community,” said Marty Ford, Senior Executive Officer of Public Policy for The Arc.

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The Arc Calls on Cuyahoga County Prosecutor to Pursue Ice Bucket Challenge Assault Perpetrators to Fullest Extent of the Law

/in , /by The Arc

Washington, DC – As the nation has reacted with outrage to the incident in Bay Village, Ohio where a teenager with autism was doused with urine instead of ice water in a fake Ice Bucket Challenge, The Arc is calling on the Cuyahoga County prosecutor’s office to charge the five teenagers identified in the case to the fullest extent of the law.

“The perpetrators of this horrific act, who reportedly were neighborhood friends of the victim, need to be held accountable for their behavior. While some seek to characterize what was done to this teen as an innocent prank, it is anything but. Call it what it is – it was an assault and abuse. These kinds of acts are an outright attack on the humanity of people with autism and other intellectual or developmental disabilities in Ohio and nationwide. There is no possible excuse for this type of assault and the perpetrators should be prosecuted,” said Peter Berns, CEO of The Arc.

“Unfortunately, people with disabilities experience violence and abuse at high rates, often at the hands of abusers who are known to them. Many have a strong need to feel accepted and fit in which can, at times, lead them into places and situations with people who they think are their friends, but who are anything but. When abuse or other violent acts are committed, whether by friends or complete strangers, our legal system must respond. In this case, the Cuyahoga County prosecutor’s office must send a message that will stop future perpetrators in their tracks – it is not okay to attack a person with a disability,” Berns added.

The Arc has a long history of standing up for the rights of people with intellectual and developmental disabilities (IDD), and supporting them to do the same, when they find themselves in dangerous situations and in our legal system. Most recently, last year, The Arc was awarded a two-year grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance (BJA) to develop the National Center on Criminal Justice and Disability (NCCJD). This is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with IDD under one roof. NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with IDD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system. Currently, NCCJD is developing training and technical assistance for law enforcement agencies that will support police departments like Bay Village’s force, as well as prosecutor’s offices, such as the office in Cuyahoga County, to administer justice for people with disabilities. And The Arc supports people with IDD to be prepared for situations like these, connect them with other survivors of abuse and bullying, and find a collective voice to stand up against it.

The Arc also runs the Autism NOW Center, an online resource center that helps people weed through the volumes of information found online about autism spectrum disorders and provide high-quality, vetted resources and information to people with autism and other developmental disabilities, their family, friends, colleagues, teachers, employers and others.

“Never should a human have to endure such needless acts of abuse. It is never justified and it is never the victim’s fault for they may not even know why they were treated the way they were, but there are people who do. The ones who do know why this kind of abuse is so wrong are the ones who stand together, like The Arc and our chapters, which stand united to push for these random acts of abuse to be punished by law. Random acts of kindness make a better person. Be good to those in need and one day the favor will be returned twofold,” Amy Goodman, Co-Director of the Autism NOW Center.

“We cannot stand by and accept this horrific act- the prosecutors know what they must do and they must do it swiftly to send the message that attacks on people with disabilities will not be tolerated and will be punished,” Cindy Norwood, Executive Director, The Arc of Greater Cleveland.

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How to Make the Most of This Year’s National Convention

/in /by Guest Blogger

My name is Jill Egle, and as a self-advocate ambassador of The Arc, I enjoy welcoming new attendees to the annual convention. This year is extra special because it is being hosted in my very own hometown of New Orleans, Louisiana. The Big Easy, as they like to call it!

As someone who has attended The Arc’s National Convention in the past, I like to offer new attendees some tips on how to make the most of the convention. Some of my favorite things to do at the convention are to check out Entrepreneur Alley and The Arc Store. Entrepreneur Alley is where other self-advocates showcase their businesses and products. And The Arc Store is a great place to pick up new gear and gadgets. I also recommend you come to my session, on September 30th, from 2-3 pm, as well as the Self-Advocate Symposium that’s being held on Wednesday, October 1st, from 9:00 am until 12:00 pm.

There is a lot of information to take in and a lot of events and programs to sign up for. Some general tips for attending the national convention are:

  • Stay safe and be aware of your surroundings
  • Let others know where you are going
  • Keep your cell phone handy at all times
  • Always keep your bag or backpack close and closed. Keep your wallet or purse zipped up

With this year’s convention being held in New Orleans, you’re definitely going to want to go sightseeing, check out cool places to eat, and do some shopping. One of my favorite things to do is just walk around New Orleans. You could view the old mansions on St. Charles Ave or hop on a street car and go to Audubon Park and see the zoo. There are also several tours you can take part in:

  • City Sight Seeing New Orleans on-off bus tour
  • French Quarter walking tour
  • Night Time Voodoo tour

And when you’re looking for good food and a fun time, I suggest heading to Mulates! Besides providing tourists (and locals) the best of New Orleans, Mulates also employs members from a local chapter of The Arc! It’s easy to get caught up in the excitement of being in a new city and attending the convention, but it’s better to be smart about where you’re going and what you’re doing. As you’re out, enjoying the nightlife of NOLA, remember to pay attention to where you are and always be alert.

If you follow these few tips, you’ll have a great time in New Orleans and at the convention.

Take care and enjoy NOLA!

Jill Egle

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FASD Awareness Day

/in /by The Arc

Today is International Fetal Alcohol Spectrum Disorders (FASD) Awareness Day! We celebrate this awareness day every September 9 (the ninth day of the ninth month), symbolizing the nine months of pregnancy, during which a woman can prevent FASDs by not drinking alcohol. FASD is an umbrella term describing the range of effects that can affect a person whose mother drank alcohol while pregnant. FASDs are the most common condition associated with intellectual and developmental disabilities (IDD) that are 100% preventable.

The Arc is very active in both preventing FASDs from occurring and in serving people who have FASDs.

The Arc’s FASDs Prevention Project

The project, funded by a cooperative grant from the Health Resources and Services Administration, informs and educates health care professionals/providers about the risks alcohol can pose to an unborn child. Up to 25% of woman continue to drink during pregnancy. Research with health care professionals and women of child-bearing age indicates that many professionals/providers still advise women that light to moderate consumption of alcohol, especially later in pregnancy, is safe. The prevalence of FASD supports the need for more education, alcohol screening, and intervention with women at risk of alcohol-exposed pregnancy. To that end, The Arc has created an FASD prevention toolkit for health care professionals to reinforce the message that no amount of alcohol is safe during pregnancy.

In addition to FASD prevention efforts, The Arc partnered with various organizations, including the Center for Disease Control (CDC), to create and promote an informational toolkit to help spread FASD awareness to all women of child-bearing age. With nearly half of all US pregnancies being unplanned, the awareness of the effects of alcohol on the developing fetus is an imperative message to provide to women.

The Arc’s National Center for Criminal Justice & Disability (NCCJD)

NCCJD is a training and technical assistance center funded by the Bureau of Justice Assistance whose mission is to pursue and promote safety, fairness and justice for all people with intellectual and developmental disabilities as suspects, offenders, victims or witnesses. People with IDD are disproportionately represented in the criminal justice system. People with FASDs are more likely to be arrested and imprisoned, and are often repeat offenders—it is difficult for a person with an FASD to fully comprehend the rules and regulations of the court and probations systems, and they are often not adequately supported in navigating the criminal justice system. 50% of people with FASDs have a history of confinement in jail, prison, a residential drug facility or psychiatric hospital and the average age that children with FASDs begin to have trouble with the law is 12.8. These are statistics that NCCJD is working to change.

Self-Advocates With FASD in Action (SAFA)

SAFA is the nation’s first self-advocacy group created by and for people with FASDs in March 2011. Despite doubling in members, the group held their last face-to-face meeting in May 2012. SAFA is currently seeking support to continue their in-person meeting, and grow the network to include more local groups nationwide. With proper funding, they also hope to create a certificate program for members to take that will enable them to create presentations on FASDs to present to the community.

AnnaAnna is a founding member who is currently working in her home state of Alaska to help others with FASDs advocate and speak up for themselves. She worked at the Center for Human Development (the University Center for Excellence in Developmental Disabilities) and has been a member of the Governor’s Council on Disabilities and Special Education (The Council on Developmental Disabilities) for 10 years. Anna uses her voice and personal experience to help educate Alaska native people, women, and people who live in rural places about the effects of FASDs. Interested in learning more, or contributing to SAFA?

The Arc and the CDC, along with partners such as NOFAS, Better Endings New Beginnings, and SAMSHA FASD Center for Excellence, are dedicated to providing accurate information to the public, in order to help raise awareness to the 100% preventability of FASDs.

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Plan for the Future: Yours and Your Child’s

/in /by The Arc

Part One of a Three-Part Series

By Laurie Hanson, Esq., Special Needs Alliance

There are an estimated 600,000-700,000 adults with intellectual and developmental disabilities (IDD) in the United States who are living with aging family members and there is no plan in place for their future. Below, our colleagues from the Special Needs Alliance emphasize the importance of planning and trusts.

With the upcoming launch of the Center for Future Planning, The Arc is shining a spotlight on the need to encourage and support families to create person-centered future plans. The Center will provide practical assistance and resources on future planning items such as assisting the individual with daily and major life decision-making; housing and residential options and supports; financial planning; special needs trusts; and personal care and daily living supports.

The time to plan for your son’s or daughter’s future is now…and that means your future, as well. What a lot of people don’t know is that planning early, while seemingly expensive upfront, will save a lot of money and lead to better outcomes in the long run. Planning gives everyone peace of mind: you, your friends and family, and your son or daughter.

This is the first in a three-part series. This first installment is an overview of estate planning to protect your son or daughter with disabilities. The second will be an in-depth look at third party special needs trusts (SNTs) and third party pooled trusts. And the third will be an overview of first party SNTs and first party pooled trusts. You may want to read articles in The Voice, published by the Special Needs Alliance, which address these issues, as well. For instance, those articles discuss a 15-step approach to planning, guardianship, and letters of intent.

Estate Planning to Protect a Child With a Disability

The heart of a parent’s estate plan is ensuring that a son or daughter with disabilities lives in safe housing, has people supporting them, and maintains a good life after the parent is gone. The family must organize all of the son’s or daughter’s information, draft a letter of intent, and then ensure that all estate planning documents and nominations of any fiduciaries or agents are in place.

One of the most important goals of this planning is ensuring that the son’s or daughter’s public benefits are maintained after the parent dies and that there is money to provide for those things that the public benefits often do not cover (service animal expenses, therapies beyond the scope covered by the state’s health program, special foot care, assistive technology, communication devices, computers, someone to support your child, etc.).

The best way for a parent to achieve the financial goals is to establish a third party SNT or a third-party pooled trust sub-account for the son or daughter and direct all assets (retirement accounts, real property, investments, cash, etc.) to the third party special needs trust – either by beneficiary designation or in the parent’s will. If the trust is established correctly and the person or entity appointed to manage the trust or the pooled trust sub-account (called a trustee) manages the trust properly, the son or daughter will be able to maintain public benefits and still have services and supports that are not covered. Upon the son’s or daughter’s death, any money left in the third party special trust can go to other family members, a charity or wherever you want it to go.

You should also decide who will be the person who makes sure that your son or daughter still gets his or her Supplemental Security Income or Social Security Disability Insurance benefits (this is called the representative payee) and who will be the person who makes sure that your son or daughter still gets his or her Medicaid, SNAP, or housing benefits. This could be an authorized representative or, if necessary, a guardian. Different programs have different agents who can be appointed to carry this out. You should know who that person is, though!

What Happens If You Don’t Plan?

If a son or daughter who relies on public benefits to meet daily needs – income, housing, food, and medical care – inherits money outright, the person will, in most cases, lose those benefits. If the person does not have capacity to manage his or her own money, a guardianship or conservatorship would have to be established so that the money can be managed for him or her. To maintain Medicaid and cash benefits, a first party special needs trust would have to be established – but this can be done only if the person is under age 65. Also, any money left in the trust upon the son’s or daughter’s death must be paid back to the state, up to the amount the state paid for Medicaid benefits.

SNTs can be complicated and state requirements vary, so families should work with professionals who are experienced with the nuances of changing government regulations. But the effort pays dividends, and the alternative may mean gambling with a loved one’s future.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc. The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change.