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Hopes and Dreams

/in /by The Arc

This time of year many people are making plans for the future, figuring out what needs to be done in the next year to accomplish their goals and work toward their dreams. The Arc and www.selfadvocacyonline.org, a project of the Research and Training Center on Community Living at The University of Minnesota, had the opportunity to ask several individuals with intellectual and developmental disabilities (IDD) to share their hopes and dreams for the future with us.

It is The Arc’s goal to help these individuals achieve their goals. We do that directly through the services provided by our national network of chapters and through projects such as HealthMeet™ and Autism NOW. And we work indirectly, advocating for the full inclusion of people with IDD in society and making sure the appropriate supports are in place to allow that. But we can’t do any of those things without you. Find out how you can help real people with IDD like Quincy, Adonis, Wendy, Joe, Amy, Jill, Ciara, David, Miki, and Sarah turn their dreams into reality through a donation to The Arc. Achieve with us!

Quincy: To settle down and have a wife and children

Adonis: “I’m working on completing my MBA. When you have a disability it doesn’t mean you can’t do the same things other people can, but you have limitations….you may have to work a little slower, you may have to do things a little different. My focus is to make sure that the person who is seeking an independent lifestyle has everything that they need, not only on a personal level but on a social level as well. People don’t want to come out of institutions and just turn around and go into a little apartment that becomes their whole life. No, they want a fully inclusive life, and that’s what I’m preaching. You can’t judge a book by its cover. Just looking at a person from the viewpoint of their disability does not tell you what that person is capable of achieving.”

Wendy: “Honestly, what I’d really love to do right now is to be a full time self-advocate and work on these issues (related to IDD)…organize other self-advocates. I love politics. To do stuff with grassroots organizing, I think that would be the most fun job in the world.

Joe: One of my biggest dreams to date is to get healthy again (after a stroke) and try to take care of myself and when I go out into my community, practice what I preach. We learn from each other how to be better people.

Amy: “So far I’ve met my dreams of getting a job and being self-sufficient and independent. My next one is to own my own home. I should be able to do that in the next year or so. I have always had that dream of the white picket fence and a little house and a garden and I’d like to make that come true. I don’t need anything huge, just enough for one or two people. And something so you can feel like you’re independent and feel like everybody else.”

Jill: “My dreams are to think big and to say that people with IDD have a lot to offer.”

Ciara: “One of my dreams is coming true – I’m getting married next year. One of my goals in the next few years will be thinking about having a family. So, I’ve got quite a few.”

David: My dreams and goals are to go as far as I can. My goal is to be around, maybe not always be a leader, but ensure that things happen for people with intellectual disabilities. I suppose ensuring that people with intellectual disabilities are treated the same as other people. Ideally I’d love to see them have more power.”

Miki: “My dream is to get married and to have children.”

Sarah: I have so many hopes and dreams. If I had to pick one, probably it would be to go back to college. I have taken classes one at a time. So far I have 15 credits. It’s hard for people with disabilities to go to college, it’s another reason why I advocate. If I get a degree, it would probably be in media or in – something I have learned recently – advocacy.

NOTE: The Research and Training Center on Community Living at The University of Minnesota | SAO is developed in part through past support by the Nec Foundation and by The MacArthur Foundation. The Research and Training Center on Community Living (RTC) operates with primary funding from the National Institute on Disability and Rehabilitation Research (NIDRR). It also receives funding from the Administration on Developmental Disabilities (ADD) and other federal agencies. The RTC is part of the Institute on Community Integration (ICI), in the College of Education and Human Development at the University of Minnesota.

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Justice for All, Even for Victims With Intellectual Disabilities

/in /by The Arc

Victims of crime who have intellectual and developmental disabilities face significant barriers when accessing the justice system. This became starkly evident in a recent case from Connecticut. Richard Fourtin was convicted of sexually assaulting a twenty-five year old woman with significant intellectual and physical disabilities including cerebral palsy and hydrocephalus. In the case of Fourtin v. Connecticut, the Connecticut Supreme Court overturned the conviction earlier this month, finding that the woman could have used “gestures, biting, kicking and screaming” to indicate her lack of consent to sexual intercourse. In response, The Arc of Connecticut signed onto an amicus curiae brief with other disability agencies and they are working toward revising state laws regarding victims with disabilities.

This case ignited fury among disability and victim advocates alike because the prosecution seemed to place blame on the victim for not doing what she either was incapable of doing (many victims freeze when they are being assaulted and are not sure how to respond or wonder if doing so could result in personal injury) or perhaps didn’t realize she had a choice to do. She may not have realized the actions against her were criminal. People with disabilities often don’t understand or appreciate what is happening to them when a sexual assault occurs, especially when they haven’t been taught what acts are considered a crime. Most people with disabilities experience violence more than once throughout their lives, and if they are living in a pattern of abuse, it is especially hard for them to recognize the criminal nature of an offender’s behavior.

Ongoing education to prevent sexual violence must be a priority in our advocacy communities due to the sheer number of people this problem affects, and the resulting untold, devastating consequences it has on so many lives. We must also concentrate on educating lawmakers, law enforcement and the courts about issues of victimization of people with IDD. Consider this data from the National Crime Victim Survey (revised):

  • In 2010, the victimization rate for people with disabilities was almost twice the rate among people without disabilities.
  • Serious violence (including rape and sexual assault) accounted for about 50% of violent acts against people with disabilities.
  • People with cognitive disabilities (which includes intellectual and developmental disabilities) experienced the highest rate of violent victimization.

October is National Crime Prevention Month, it’s a great time for chapters of The Arc and other advocates to support crime victims with intellectual disabilities.. Reaching out to local victim assistance agencies and offering education and support in their effort to help crime victims with disabilities is a great first step. Consider partnering together in a media campaign about preventing the victimization of people with disabilities. Support self-advocates who are beginning to speak up for themselves against violence in their lives by helping them develop brief presentations about this topic that they can take to the community (schools, police departments, rape crisis centers). And, let’s band together to be sure our support of people with IDD extends to making sure crime victims are not victimized again by the criminal justice system.

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Do You Know What’s at Stake in the Upcoming Election?

/in /by The Arc

Now that you are registered to vote, do you know what’s at stake on November 6th? So many issues facing people with intellectual and developmental disabilities (IDD) are being debated at the local, state and federal level – you just need to tune in to learn.

Take the Presidential race – did you watch last week’s debate in Denver, Colorado on television? Both candidates talked about their views on Medicaid – the lifeline for people with IDD. And the Affordable Care Act, the new health care law that will bring about comprehensive reforms that will benefit Americans with disabilities by prohibiting discrimination based on health status and improving access to care, was hotly debated. If you missed it, you have two more chances to hear from President Obama and Governor Romney (and their running mates have a debate scheduled too).

In late September, the campaigns sent representatives to speak on their behalf at the National Forum on Disability Issues in Columbus, Ohio. This was the only chance both campaigns had to talk about disability-specific issues in the context of what they would do as President. If you missed watching it live online, you can go to the Forum’s website to watch it and find other materials.

You can also educate yourself by going to the candidate’s websites:

Now is your last chance to get educated before you cast your ballot in this election – get the facts!

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The Affordable Care Act: What Disability Advocates Need to Know

/in /by The Arc

Now that the U.S. Supreme Court has affirmed the constitutionality of the Affordable Care Act (ACA), the disability community must work to better understand the law and the many benefits it can provide to people with disabilities. This will be critical to the community’s role in helping to move states forward with implementation.

Numerous ACA provisions related to both acute care and long term services and supports hold great promise for improving the health and wellbeing of people with disabilities. The Arc’s national public policy team has put together this analysis to provide information about the major provisions and the status of their implementation.

This analysis was previously shared with those who are signed up for our Action List. Want to get involved with The Arc’s legislative advocacy?

If you require a Word version of this document, please contact Kristen McKiernan, McKiernan@thearc.org.

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Your Help Is Needed to Make the National Forum on Disability a Success
/in /by The Arc

Find out more about how you can help make the National Forum on Disability Issues a success this election year. Read more about it in our Action Center.

The National Forum on Disability Issues is scheduled to take place on September 28, 2012 in Columbus, Ohio. Even if you do not live in Ohio, your support for this momentous event is important! Help us by reaching out to both candidates to request that they make disability related issues a priority and take part in this important Forum.

The Arc has joined more than 40 other national organizations in pledging our support as a co-sponsor of this event. Now we need you to help by reaching out to the candidates today.

Read more about it in our Action Center.

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Finding Your Perfect Summer Job

/in /by The Arc

With summer’s arrival, thousands of teens across the country are looking for their perfect summer job. Individuals with intellectual and developmental disabilities (IDD) have a lot to consider as they start applying for summer jobs, and we hope the following resources will be useful as they begin the process not only for summer employment, but for a meaningful long-term career.

For a comprehensive list of terms that will help you or your loved one as they begin to look for a job, visit the Autism NOW Center’s employment glossary. This compilation will explain some terms that may otherwise be confusing and answer questions about different work environments.

Planning is key. If you break your job search down into a series of small, workable tasks, the process will be more manageable. One way to keep tasks in order is to create a 30-Day Placement Plan. The following brief provides a placement plan form, along with instructions about how to use it: The 30-Day Placement Plan: A Road Map to Employment.

The Arc’s Resource Center has a number of links to help you learn about additional programs, and how to utilize the transition services that you already have in place to find employment.

There are also a number of resources available in your community:

  • Contact your state or local IDD agency or State Vocational Rehabilitation Agency for information about employment services for people with disabilities in your area.
  • If you are a student age 16 or older who receives special education services, your Individualized Education Program, or IEP, should include a transition plan with goals for your transition to adult life, including employment. While you are still in school, you should be learning how to find a job or continue your education after you graduate.
  • Contact your local chapter of The Arc. They can assist you in finding out what you need to do and who to contact in your area. Find your local chapter’s contact information.
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Important Survey From the Disability and Abuse Project of Spectrum Institute

/in /by The Arc

Your Participation Is Appreciated!

A startling fact that many not be aware of is that individuals with intellectual and developmental disabilities are not only more likely to be victims of abuse, but they are more likely to be victimized repeatedly.

Struck by the number of abuse cases against individuals with disabilities appearing in the media, the Disability and Abuse Project of Spectrum Institute created a survey on the attitudes, beliefs and experiences of many demographic groups (including individuals with disabilities) that have encountered abuse as victims and through their profession. The survey was created to help advocates and professionals better understand what victims are saying about their abuse experiences and how professionals view their experiences with abuse/crime victims.

This survey will provide professionals in the disability field useful information that can help better serve our community. The survey takes about 8 minutes, is completely anonymous, and all results will be published online.

Whether you are a person with a disability, a family member of someone with a disability or a professional in the disability field, you are welcome to take this survey. Over 2,300 have already let their voices be heard. Make sure yours is one of them!

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Nonprofits Lifting Our Voices – Vote November 6!

/in /by The Arc

This November, voters will elect the president, 33 U.S. senators, every member of the House of Representatives, and countless others in state and local races. 220 million Americans are eligible to vote, including over 25 million young people and new citizens eligible for the first time. But who will turnout?

Voter turnout will be the key, not just to who wins, but to what voters and which communities are heard after Election Day. In 2010, 6 of 10 eligible voters didn’t turnout, and a disproportionate number were younger and lower income.

Many don’t vote because they are not asked to or reminded by a friend or organization close to them. Small things, like forgetting to request a mail ballot or missing a registration deadline, can get in the way.

Our nonprofits can change that. We are a powerful civic force whose status as trusted messengers and personal relationships with the people we serve every day has the potential to reach and engage large underrepresented populations. Whether your agency helps 10 families, houses 200 residents, or serves 5,000 people, you can improve the lives of your clients and constituents by encouraging them to be active in the democratic process.

Nonprofit VOTE makes it easy with clear and concise resources and materials to help you learn how to encourage voter participation. Nonprofit voter engagement can take a variety of forms: you can register voters, educate your clients and constituents about the voting process, engage candidates, or take a stand on a ballot measure. Browse our resources and get started today!

Together, we can raise our voices and encourage everyone to become a voter in 2012. As Susan Dreyfus, the president of the Alliance for Children and Families asked, “Who better than the nonprofit human services sector to embrace participation in the democratic process as a part of how we achieve our missions?”

George Pillsbury is the founder and Director of Nonprofit VOTE, as well as the author of “Nonprofits, Voting, and Elections: A Guide to Nonpartisan Voter Engagement for 501(c)(3) Nonprofit Organizations”. He also founded and directed MassVOTE and started several foundations dedicated to community uplift. His work in the fields of philanthropy, social investing, and voter and civic participation spans three decades. 

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The New Autism Numbers: Why They Matter

/in /by Ann Cameron Williams

This past week, the Centers for Disease Control released their new data on the prevalence of autism. The numbers are staggering: an estimated 1 in 88 children will have autism. The number for boys is even higher: 1 in 54.

The implications of these numbers that seem on an unobstructed downhill slide stopped me in my tracks.

Think ahead ten years from now. Think about your family. A classroom. A school bus. Your church or synagogue, a train car, where you work and where you live. Think about your local Chapter and its capacity to respond to this population and their families, including funding resources. Think about the number of 1 in 88 and how that plays out in a human scale.

Are we ready?

The Arc stands firmly embedded in more than 700 communities and it collectively serves more people with autism than any other organization. In this role, we must involve, engage, understand, and embrace the rising cohort of families connected to children with autism and provide them access to what we have learned, what we know.

An observation: It seems that many families connected to autism are indeed focused on the “cure” for the phenomenon that they feel has suddenly obscured the personality, communications, and functioning of their child. This focus has created a rupture at times between those who would and would not cure disabilities, sometimes creating robust debates within disability identity and disability pride and civil rights frameworks. Face it – many of us have worked hard to have society accept a “disability is a natural part of the human experience” attitude to advance full inclusion and quality life opportunities for people with disabilities. Going back to a “cure” stance and invoking medical model thinking for disability issues is perceived as a threat by many in the disability world.

“The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community.”

Understanding this is a loaded and sensitive topic. I think we can all agree that encountering autism is a much different experience than when a family encounters the genetically or physically explainable intellectual or developmental disability at birth. In my journey, I have listened, as perhaps you have, to heartfelt stories of how a child was one day, and then was someone else over a very short amount of time due to something called “autism.” There are no answers. No reasons or even proof – except for the altered behavior. From listening – without trying to alter their perspectives (an important element in the listening) – I now have a better understanding and empathy for why families seek the “cure” for autism. It’s not because they hate disability or value people with disabilities less than those who don’t have a disability; in fact, many autism-related families do not identify as being part of the disability community and have never been taught our principles. Families connected to autism may see the autism event as a preventable and perhaps reversible medical phenomenon that had monumental detrimental effects on their loved ones. And even as some do not accept autism as the obscuring agent, many surge into full acceptance of the child that now exists, as a whole person. Loved, celebrated, accepted, supported. Seeing them in action is not much different than watching our own families in action within The Arc.

And there lie the differences and the commonality, which are not, I would argue, mutually exclusive of the other. All we need is a bridge.

Building the Bridge

The Arc supports families connected to people intellectual and developmental disabilities across the lifespan, including those with autism. With families that are learning about us for the first time, we cannot be so ferocious in our demand for immediate alliance with our learned perspectives that we forget that we, too, started at some point on the road to understanding that disability is okay, it can be celebrated. At some point we learned for the first time what self determination, self advocacy, and disability pride are and how to infuse these principles into our daily lives. It is a journey. I do not believe that seeking answers and resolution to the question of autism are in conflict with our (The Arc’s) core values, mission, or principles. Whether autism is considered an epidemic or a public health emergency or not, The Arc serves and supports people no matter what definitions are given to a specific diagnosis by the medical community. I do believe that The Arc and others in the disability nation have a responsibility to understand these perspectives, to accept families for who they are and where they are in their journey. I believe that The Arc should offer them what we do know in terms of what inclusion means and how it can be achieved in the community with the right supports; about advocacy and self-advocacy, self-determination, disability pride; and provide culturally proficient services (autism as culture) to meet their needs. Along with that should come more thoughtful listening, a lowering of the aim against those who seek solutions, and the raising of a bridge to go with it.

In many ways, The Arc itself is a spectrum. A bridge, if you will. We serve and support many with an incredibly diverse array of needs, perspectives, diagnoses, and goals. Our mission: to promote and protect the human rights of people with intellectual and developmental disabilities and actively support their full inclusion and participation in the community throughout their lifetimes. There’s room in The Arc for many more.

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Developmental Disabilities Awareness Month Q&A With T.J. Sutcliffe

/in /by The Arc

This month, The Arc’s blog will feature a Q & A with members of The Arc’s national office staff to help raise awareness of issues important to the IDD community during Developmental Disabilities Awareness Month. T.J. Sutcliffe is a policy advocate for The Arc working to promote and protect the rights of individuals with IDD through positive public policy.

Q. T.J., you work on the front lines in Washington, DC helping to shape public policy to meet the needs of people with IDD. Why is it important to take advantage of Developmental Disabilities Awareness Month in March to get involved in public policy?

“When a Member of Congress hears directly from a constituent with a disability … it can make the issue real in a way that statistics just can’t.”

A. Developmental Disabilities Awareness Month is the perfect time for people with IDD, their families, and friends to get involved in public policy. Right now, the U.S. Congress is starting to look at Federal funding for next year, and we know that funding is going to be very tight. It’s a great time to speak up early in the process, and let Congress know that programs like Medicaid are a lifeline for people with IDD and their families, and must be sustained. Also, a huge part of awareness is telling our stories – and the stories of people with IDD and their families are incredibly powerful. When a Member of Congress hears directly from a constituent with a disability, a parent, a sibling, a friend, or a neighbor it can make the issue real in a way that statistics just can’t. So don’t wait. Check out The Arc’s “Don’t Cut Our Lifeline” Medicaid toolkit and visit The Arc’s Action Center to find out how you can get involved.