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The Arc in Nevada’s Self-Advocacy Coordinator Honored for Impact on Disability Movement

/in /by The Arc

Yesterday, The Arc in Nevada’s Santa Perez was presented with The National Association of Councils on Developmental Disabilities’ (NACDD) Champions of Equal Opportunity (CEO) Award for 2013. Delaware Governor Jack Markell is NACDD’s other CEO Award recipient this year for his work as the Chair of the National Governors Association where he is promoting employment for people with disabilities nationwide.

Perez joined The Arc in Nevada as Self-Advocacy Coordinator in 2012. In her role, she focuses on ensuring self-advocates, or people with disabilities who advocate on their own behalf for their rights, in Nevada have the information and access they need to become engaged in advocacy activities through The Arc in Nevada’s “Growing a Grassroots Movement” project.

Originally from Southern California, Perez earned her Bachelor of Arts degree in Psychology at California State University, Northridge. She owns her own home and lives with her son Noah and companion Timothy Brown in Las Vegas, Nevada. A true champion of rights for Nevada’s citizens with intellectual and developmental disabilities (I/DD), she leads various trainings and workshops and serves as a client advocate. In addition to her position with The Arc in Nevada, Perez currently serves as the Statewide President of People First of Nevada.

“I am so honored to be receiving this award along with Governor Jack Markell. I don’t do what I do for recognition like this – I do it because I love to empower self-advocates. This award inspires me to work harder than ever to help others ensure that their voices are heard in Nevada and across the country,” said Perez.

The Arc in Nevada’s “Growing a Grassroots Advocacy Movement” program is funded by the Nevada Governor’s Council on Developmental Disabilities. Through this program, The Arc of the United States is working to develop long-term capacity for advocates to have input and impact on issues of importance to people with I/DD and their families. This project started in 2011, and marks the first time The Arc has had a statewide presence in Nevada since the mid-nineties.

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Brazilian Educators Visit The Arc Baton Rouge Children’s Services

/in /by The Arc

By Barry Meyer, Executive Director of The Arc Baton Rouge

Earlier this month, we were thrilled to welcome five visiting educators from Brazil to The Arc Baton Rouge Children’s Services. The visitors came to Louisiana through a program of the U.S. Department of State. The guests joined us from five states across Brazil and included four Secretaries of their state’s Department of Education and one Deputy Secretary.

We were selected because our programs help create inclusive preschool, child care and educational opportunities for children with disabilities. One of the State Department’s specific objectives was to “Expose participants to the ways in which private sector entities are engaging with public sector partners in support of educational programs.”

Between Heidi Shapiro, Children’s Services Social Worker, two interpreters, and me, we presented four programs of The Arc Baton Rouge Children’s Services:

  • Early Childhood Inclusive Program
  • The Preschool and Child Care Training and Technical Assistance Project
  • Parent Supports and
  • School Age Supports

Using a multi-platform approach including PowerPoint presentations, multilingual handouts, informal discussion, and a Q and A session, the guests learned how The Arc Children’s Services staff works with public school administrators, principals, and teachers to help them restructure programs. Additionally, they learned how our staff serves as mentors and coaches to support teachers to include children with disabilities in regular classes. They also saw how a similar training and on-going mentor/coaching approach worked in preschool and child care settings.

In the end, the participants understood that training parents and care givers to be their child’s strongest advocate was critical to ensuring success in transitioning to public school systems. They also left with the knowledge that an organization that is not a direct stakeholder, such as The Arc, can provide that training to individual parents, combine it with mentor/coaching of teachers and create opportunities for individual children as well as real systems change.

I feel that The Arc Baton Rouge was very fortunate to have this opportunity to demonstrate to our Brazilian guests how we at the grass roots advocacy and service level incorporate our core values in a very real world way!

The five education officials concluded their visit with a brief tour and overview of The Arc Early Head Start program. The visiting Brazilian educators were:

Ms. Hortencia Maria Pereira ARAUJO, Deputy State Secretary of Education, State of Sergipe

Ms. Maria Izolda Cela De Arruda COELHO, Secretary of Education, State of Ceará

Ms. Maria Nilene Badeca Da COSTA, Secretary of Education, State of Mato Grosso do Sul

Mr. Claudio Cavalcanti RIBEIRO, Secretary of Education, State of Pará

Dr. Herman Jacobus Cornelis VOORWALD, Secretary of Education, São Paulo State

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July Is National Park and Recreation Month, a Great Time to Start Exercising

/in /by The Arc

One great way to improve your health is to go outside and get moving. During the month of July, parks all across the United States will be celebrating Park and Recreation Month by holding fun events open to everyone. By taking part in these events, you will not only have a good time but you can also improve your health by exercising.

Exercising can help you stay in shape and keep a healthy weight. But, it also has other benefits. Activities like horseback riding can help improve coordination and physical fitness. Also, exercise can also help prevent heart disease, reduce risk of certain types of cancer, and improve mental health. Whether you enjoy playing basketball, practicing yoga, biking, swimming, or any other physical activity, staying active helps improve your health.

But, how much should you exercise per day? All adults – those with and without disabilities – should exercise at least 5 days a week for 30 minutes to stay healthy. Children should exercise at least 5 days a week for 60 minutes a day. While people with and without disabilities can do many physical activities, everyone should make sure to exercise at a safe level so they do not strain or hurt themselves. There are also resources specifically for people with disabilities that you can use to get ideas of how to stay active and healthy. The Arc’s HealthMeet program also promotes good health among people with intellectual and developmental disabilities with local health assessments, webinars on health topics, and other information available online.

With so many different fun events and healthy activities available, July is the perfect month to visit your local park or recreation center. For more information about how to get to a park or how to get around a park, contact your local park or find information online about accessibility for people with disabilities.

With this information in mind, we hope you can make the most of your summer and get outside!

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Mental Health and How You Can Help

/in /by The Arc

On June 3, President Obama held a conference at the White House about mental health. Mental health issues are a national policy concern, but it is important to also think about mental health in your life too. By seeking support and fighting the stigma, or embarrassment, about psychiatric disabilities, you can create a healthier world for yourself and others.

Anyone can have mental illness and around 25% of adults in the United States have a mental health disorder. Mental health is also a big concern for people with intellectual and developmental disabilities (I/DD). Some professionals may be unable to correctly diagnose psychiatric disabilities with people who have I/DD so these individuals may not receive the care they need. Untreated mental illness alone makes you less healthy and it is also associated with other health issues like diabetes, cancer, and heart disease. The Arc’s HealthMeet project works to improve physical health for people with I/DD, but you can contribute too by creating a healthier conversation about mental health.

One of the bravest steps to improve health is getting help for living with mental illness. There are many mental health resources available for you or someone you know. If you are thinking about hurting yourself or committing suicide, call the National Suicide Prevention Hotline at 1-800-273-TALK. If you are worried about someone you know, stay with them and urge them to seek help, either at a hospital or from a mental health professional. For other support, like finding mental health services, the National Institute of Mental Health website has many resources listed under “Finding Health.”

In addition to encouraging others to get help, you can also help change how we talk about mental health. Mental illness can affect anyone, but it is often seen as something shameful. This makes it harder for many people to get help. By talking in an open and non-judgmental way about mental health, we can all work to create the healthier world envisioned by HealthMeet and The Arc.

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Where Have You Been, Barbara Walters?

/in /by The Arc

By Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and dad to Brian, a young man with Down syndrome

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

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Top Technology Companies Coming to Convention

/in /by The Arc

Verizon and Microsoft will be joining The Arc at our National Convention August 3-5 in Bellevue, Washington for a program focused on technology, innovation and Achieving Momentum in the movement for people with intellectual and developmental disabilities.

Convention attendees will hear from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. who will kick off a technology-focused plenary session with thoughts on the new role of corporate social responsibility as a technology company. And, Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group will speak about the newest assistive technology for individuals with disabilities. Known as the Technical Evangelist for the Accessibility Business Unit at Microsoft, Dan is sure to infect all with his enthusiasm for innovation when it comes to making life better for people with I/DD. Both men will participate in a panel discussion giving you an opportunity to ask your most pressing technology questions and capping off a Convention full of information and inspiration.

In addition to these noted speakers, this year’s Convention features demonstrations of cutting-edge assistive technology, breakout sessions on cloud computing, tablets and applications, visual story-telling, transitioning to a paperless office and more technology topics. This year’s Convention is shaping up to be a don’t-miss event with the addition of Verizon and Microsoft to an already stimulating program featuring acclaimed author Buzz Bissinger and sessions on innovations in family support, cultural diversity, building our grassroots movement and more.

Check out the full schedule and register now! Be sure to book your room at the Hyatt Regency Bellevue before July 2 and take advantage of early registration discounts before July 5.

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HealthMeet® in Action in 5 States, Changing Lives

/in /by The Arc

By Ann Cameron Williams, PhD, Senior Executive Officer, Research and Innovations, and Karen Wolf-Branigin, Senior Executive Officer, National Initiatives

Many of us at The Arc at local, state, and national levels get up and go to work every morning to make a positive difference for people with intellectual and developmental disabilities (I/DD). It’s not only what we do, it’s who we are.

When I have the opportunity to go visit local and state Chapters, I am usually stunned by the creativity and sheer genius that is activated on behalf of people that are in need of a better solution. This past month, The Arc US invited five Chapters from the five states that are engaged in our HealthMeet®: Promoting Health for People with Intellectual Disabilities that is funded by the CDC, to share with us their approaches to improving health in their communities. As we listened, once again, I found myself marveling at the depth of understanding and quality of response that our Chapters deliver.

For example, in Massachusetts, The Arc of Massachusetts is working in collaboration with the health providers from the Boston Medical Center, the Developmental Disabilities Nurses Association and Simmons College to conduct health assessments. They translated the HealthMeet flyer and engaged in specific outreach efforts in Boston’s Portuguese community. In addition, The Arc of Massachusetts is coordinating a four-week Health and Nutrition program for people with intellectual/developmental disabilities

In Pennsylvania, ACHIEVA, The Arc of Greater Pittsburgh, recruited physicians, medical residents and students, nurses, retired nurses, nursing students, paramedics, physical therapists and speech/language pathologists to conduct health assessments at ACHIEVA programs, community recreation programs and community health fairs. ACHIEVA created and produces an e-newsletter, Your Health Matters, with articles on policy, applied research, services and training events related to HealthMeet events and health and intellectual/developmental disabilities.

In North Carolina, The Arc of North Carolina is building the HealthMeet program within their local chapters with 8 sites across the state. Their goals are to work in rural and urban areas, serve as a catalyst to build and strengthen partnerships, bring value to the membership and let chapters shine. They have created an infrastructure with a list serve, real-time contact lists, and shared group workspace to share tools and processes. Significant community involvement from a plethora of stakeholders is an important part of the North Carolina model.

The Arc of New Jersey is working with The Arc of Atlantic County, The Arc of Camden County, The Arc of Essex County, The Arc Gloucester, and The Arc of Monmouth to implement HealthMeet events. The chapters complete assessments as part of their day program services and at ambulatory care centers. Publicity efforts have included print and broadcast media, including guest appearance on a local radio show, podcasts and interviews with local television stations.

And in San Francisco, The Arc San Francisco hosts Wellness Wednesdays, an organized drop in health assessment for the people they serve. The program is held on site so it’s easily accessible to individuals, allows for private screenings, and is easy to quickly set-up/breakdown. The Arc San Francisco developed their own registration system and uses Nurses and volunteers to conduct the assessment. In addition, they are developing processes to identify potential health issues on an ongoing basis by training Direct Support Professionals to be aware of hidden health issues.

In each state, Chapters are facilitating life-changing events that are helping people with I/DD identify health concerns and training medical health professionals and students to become more familiar with interacting with people with disabilities. Each Chapter has developed a customized approach, which is one of the hallmarks of our responsive network. The Arc of the United States is also helping with systems level changes through innovative and timely training via our HealthMeet webinars, partnering with the University of Minnesota to advance self-advocacy training in health promotion and other essential life areas at www.selfadvocacyonline, and advancing in-community health promotion program training.

This effort is bringing into clear relief the chronic and often unattended health care needs of the people we serve. Who is looking? The CDC is, for one. The health systems of the five states in which HealthMeet runs are, for another. And the thousands of medical health professionals that are contributing their time and interests into this effort are, as well. We are changing the world.

This thing is, health is – and should be considered – a civil right. Chapters of The Arc are helping to get this word across to many who may be hearing this message for the first time. Simply stated, with gratitude: thank you.

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Highlighting the Talent of Self-Advocates in Evansville, Indiana

/in /by The Arc

By Denise Seibert, Director of Development, Evansville Arc

Last month, Evansville Arc was proud to partner with The Arts Council of Southwestern Indiana to host our first ever art show in The Arts Council’s Bower-Suhrheinrich Foundation Gallery located in downtown Evansville, Indiana. The show opened on May 10 and runs through June 12. The show features fabric mosaics that have been completed by individuals served by our chapter, along with volunteers and staff of Evansville Arc.

The project began in 2009 as a one-time project to engage community volunteers with the clients served in our Adult Day Services program. However, the project was such a success that we have continued work on the mosaics thanks to the help of local vendors, such as fabric stores and interior design professionals, who generously donate wall paper samples, fabric samples, scrap materials and other items.

I believe our President, Deidra R. Conner, described the project best when she said “This project truly demonstrates that the love of art is universal and that everyone – regardless of physical or cognitive abilities – has talents or gifts that should be shared with others.”

Description of pieces

“Freedom of Religion.”

This mosaic represents the right for all people to practice their religion or beliefs. Seclusion of individuals with disabilities in the past and societal attitudes impeded their ability to express and practice their religion or beliefs. Many individuals with intellectual and/or developmental disabilities indicate that being able to participate in worship services of their choosing greatly enhances their lives.

Beverly attended church with her sister before her sister passed away. With supports, Beverly is now able to attend religious services. ““I’m happy to go to church. I haven’t been since my sister died. I really miss the music & want to sing.” – Beverly W.

“Freedom of Expression.”

This mosaic represents the right to speak openly and fully without fear of undue criticism or punishment. Too often, persons with disabilities have not been given the opportunity to speak for themselves. Due to social and cultural attitudes, their opinions were not always given the same value as those without disabilities and their efforts to speak up were stifled. Individuals with disabilities have much to say and are encouraged to speak up about issues that impact their lives and their community.

“I am able to speak my mind and follow what’s in my heart”- Matt B

“Right to Access”

This mosaic represents the right of freedom of movement in the community. Freedom of movement is two-fold: being allowed to be a part of one’s community and being able to access it. In the past, persons with intellectual and/or developmental disabilities were encouraged to be placed in institutions and hidden from the rest of society. They were not able to attend public schools and take part in the daily activities such as employment, shopping, using recreational facilities, etc. Prior to the Americans with Disabilities Act (ADA) even if they were allowed to participate, many individuals with disabilities were limited due to physical or other barriers. Today we are seeing more and more individuals with disabilities contributing to their communities as employees, volunteers and taxpayers as they are given opportunities and reasonable accommodations.

“The best thing about getting my job is that I’m earning my own money and I now have responsibilities. Having responsibilities is the important thing, like showing up for work and being on time.” – Nathan B.

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National Convention Pre-Conference Dedicated to Self-Advocacy

/in /by The Arc

The Arc’s annual National Convention kicks off August 3 with a pre-conference dedicated to fostering self-advocacy among people with intellectual and developmental disabilities. Join us on Seattle’s East Side for “Oh, the Possibilities: Self-Advocates as Leaders in Your Community” hosted by The National Council of Self-Advocates of The Arc.

We will explore the all of the possibilities for self-advocate leaders in the community with training on effective communication, networking, building leadership skills, developing funding for self-advocacy group startups, and a demonstration of Self-Advocacy Online, a website dedicated to the self-advocacy movement. Don’t miss a special presentation of the history of the disability movement and civil rights and an art activity to get the crowd going as well.

Register now! A separate pre-conference registration is required in addition to your Convention registration but is only $15 for self-advocates! And, take advantage of early bird discounts on Convention registration when you sign up before July 5! Visit the Convention website to see the full schedule and check out the other special events we have planned.

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Equal Access to Relationships and Sex for People With Intellectual and Developmental Disabilities…It’s About Time

/in /by Leigh Ann Davis

A recent story in The Journal (Martinsburg, WV) about the debate over whether people with disabilities should legally be able to use sex surrogates touches on a very real yet often ignored issue within the disability community: rights regarding sexuality. People with disabilities are often seen as asexual and not supported to fully enjoy and express their sexuality at the same level as those without disabilities.

Here in the U.S., we struggle with fully understanding and accepting sexuality, especially if we are talking about our own children. And this is true whether or not our children have disabilities, but can complicate the situation much more for parents of children (including adult children) with disabilities. This international debate draws attention to a very real problem – sexuality typically is not considered a valid need that demands focused attention. And yet, who can measure the actual effects this inattention has on the disability community at large? For example, who knows what “behavioral issues” and other problems could be averted if sexual needs of people with disabilities were, at the very least, being acknowledged? What if their God-given relational and sexual needs were actually supported and even celebrated?

All moral arguments aside, have we considered every possible option to this dilemma and actively supported people with disabilities to pursue their own sexual fulfillment? Consider this: How likely is it that people with disabilities, especially intellectual disabilities, have access to consistent, effective education on ways to understand their own sexual feelings and act on those in safe and healthy ways? Are they being taught how to build safe and healthy relationships and then given opportunities to do so? Do they have enough opportunities to meet that special someone who could become a future spouse, boyfriend or girlfriend? Another consideration is the disproportionate amount of sexual trauma that people with disabilities face on any given day. The rate of sexual violence is twice that experienced by people without disabilities, and those with cognitive disabilities face the greatest risk of all. Is adequate counseling provided to victims so they are able to move forward confidently and securely in their own sexuality? What is the true effect of so much sexual violence within the minds, hearts and bodies of people with I/DDs?

Whether parent or professional, we all have an important role to play in supporting people with intellectual and developmental disabilities to achieve their own relationship bliss (or at least try to as this can be elusive for many of us with or without disabilities), and that may or may not include sexual activity. By providing equal access to this basic human right, and refusing to treat people with fully functioning hearts and sex drives as if they were still children, or in some way asexual, a door is open to explore the full range of what it means to be human, including within the realm of sexuality.

For ideas and resources on how to support this cause, visit the Autism NOW’s website.