Hopes and Dreams

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 (I/DD) 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 I/DD 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 I/DD 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 I/DD)…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 I/DD 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.

Parent, Advocate for The Arc Lunches With Vice President Biden to Discuss Fiscal Cliff’s Impact on His Family

Washington, DC – Today, Bob Hage of Pennington, New Jersey, a parent of twin daughters with significant disabilities and tireless advocate for The Arc, met with Vice President Joe Biden for lunch along with six other individuals at the Metro 29 Diner in Arlington, Virginia to share his story about how a $2,000 or more middle class tax increase as a result of going over the “fiscal cliff” will impact his family’s ability to pay for disability-related expenses in 2013.

Bob Hage and his wife Odette Adrian are a middle class family struggling to make ends meet. They have a 13-year old son Vann, and twin 9-year old daughters Annika and Maya, who have severe developmental disabilities and are non-verbal and medically fragile. As a family with children with special needs, they experience the same expenses and stresses other families encounter. However, they also face the additional financial, emotional, and physical challenges of providing very expensive care for two of their children.

“This was a critical opportunity to impress upon the Vice President the importance of protecting Annika, Maya, and millions of families like ours from a tax increase that will have devastating consequences. My daughters can’t afford to lose the ground they have gained through therapies that will allow them to reach their full potential. Not only did Vice President Biden listen, he clearly understands the challenges families like mine face, and I walked away trusting that the Vice President will do everything he can to protect my daughters’ future,” said Bob Hage.

Bob Hage and his wife Odette Adrian want Annika and Maya to have happy and fulfilling lives just as other parents want for their children. In order for them to help Annika and Maya achieve these goals, they need to pay for critical services. If the country goes over the “fiscal cliff” and their taxes go up $2000 or more, they will be forced to eliminate some of their daughters’ therapies and activities, which have proven to be crucial to their development.

Annika and Maya go to speech therapy, which has been instrumental in moving them from being totally dependent on liquid tube feedings to eating all their nutrition from pureed foods. Currently, speech therapy’s primary goal is to help Annika and Maya learn to chew so they can eat solid food.

Annika and Maya have significant dental issues and anything other than regular checkups, such as fillings and beyond, requires hospitalization and anesthesia. These other routine procedures are not covered by their medical insurance and will be cost prohibitive.

Both girls participate in weekly music and gymnastics classes for children with special needs. While music and gymnastics is recreational for most children, it is vitally important to Annika and Maya’s development. The music class focuses on building finger strength and coordination through piano and helps the girls to vocalize through singing. The gymnastics class concentrates on building muscular strength and endurance which is especially important for children with low muscular tone.

An increase of $2,000 or more in taxes would have a major impact on the Adrian-Hages’ ability to provide the services and supports their children with severe disabilities need.

“Annika and Maya shouldn’t face the consequences of gridlock in Washington over taxes. My girls need these services to learn and keep basic life skills, like chewing food, and to gain some strength so that they can be as independent as possible. But my wife and I may be forced to make some unimaginable choices if our taxes go up by $2,000 at the beginning of the year,” said Bob Hage.

The Arc’s Public Policy Director to Be Honored by Social Security Administration

Washington, DC – Today, The Arc’s Marty Ford, will be honored by the Social Security Administration (SSA) for her years of leadership and commitment to SSA’s disability programs. Ford serves as the Director of The Arc’s Public Policy office, driving the organization’s public policy agenda.

In her current role, she leads the five person team representing The Arc on Capitol Hill and before federal agencies. With nearly 30 years of experience, Ford is a recognized leader in federal public policy affecting people with disabilities, particularly the Social Security disability system, long term services and supports, and Medicaid, and has testified numerous times before Congress. She served three years as Chairperson of the Consortium for Citizens with Disabilities (CCD), a coalition of over 110 national organizations, and continues as its Immediate Past Chairperson. She also serves on the Boards of Directors of the National Academy of Social Insurance and Advance CLASS.

The award will be presented by Michael J. Astrue, Commissioner of Social Security, on Capitol Hill on Thursday, December 6. During the event, Commissioner Astrue will also announce the expansion of the list of conditions that qualify under SSA’s Compassionate Allowances program. The Compassionate Allowances program is designed to quickly identify diseases and other medical conditions that, by definition, meet Social Security’s strict standards for disability benefits. Since its inception, the initiative has helped ensure that Americans with the most severe disabilities receive their benefit decision within days instead of months or years.

“I’m honored to be receiving this award, and I want to thank Commissioner Astrue for his years of service at the Social Security Administration and his efforts to improve the agency’s services to people with disabilities, including people with intellectual and developmental disabilities. As he wraps up his term, the expansion of the Compassionate Allowances program will be an important part of his legacy,” said Ford.

The Arc Reacts to the U.S. Senate’s Defeat of the Convention on the Rights of Persons With Disabilities

Washington, DC – The Arc released the following statement in response to the U.S. Senate’s defeat of the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

“This is a sad day for individuals with disabilities across the globe. The simple truth is that the Convention on the Rights of Persons with Disabilities would help individuals with disabilities around the world obtain the rights and protections we have here in the United States. The ratification of this treaty would have unified us with millions of disability advocates, family members, and self-advocates of all nations. This isn’t the end of this fight – advocates across our country will continue to work to make sure that our friends and colleagues abroad know that we stand with them and share their goals,” said Peter Berns, CEO of The Arc.

The Arc has been working with numerous other disability advocacy groups and U.S. Senators to garner support for the ratification of this treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. For months, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification. And in October 2012, The Arc hosted its annual convention in Washington, DC with Inclusion International, a global federation of family-based organizations advocating for the human rights of people with intellectual disabilities worldwide. A major focus of the conference was the vital importance of the CRPD and the release of Inclusion International’s Global Report on the Right to Live and Be Included in the Community.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations. As of June 2012, the Convention had 113 ratifications and 153 signatures. On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification. Over 165 disability rights organizations and 21 veterans’ service organizations support ratification of the treaty. Senator Bob Dole, who was a champion of the Americans with Disabilities Act, was present for the vote and urged his fellow Republicans to vote in favor of the treaty. Unfortunately, his plea along with strong Congressional and disability community support was not enough to overcome the unfounded fears raised by the opposition.

The Arc Responds to ABC News Report on Restraint and Seclusion

Washington, DC – After reviewing the ABC News piece on restraint and seclusion in America’s schools, The Arc issued the following statement.

“No child should ever be exposed to these kinds of harmful practices. Children with disabilities are especially at risk and these practices are used on them at disproportionate rates. The Arc applauds ABC News’ work to shed light on restraint and seclusion in America’s schools, and we hope it sparks action in Congress to pass legislation to put in place national standards that keep our classrooms safe and require all school personnel to receive training in effective positive behavioral interventions,” said Peter Berns, CEO of The Arc.

Background

Reports from the Government Accountability Office and the National Disability Rights Network have documented that children are injured, traumatized and even killed as a result of restraint and seclusion in schools and that the use of these dangerous techniques is widespread. The Arc believes that the harm suffered by students through the use of dangerous restraint and seclusion practices in our nation’s schools is unacceptable. Numerous alternatives to restraint and seclusion exist, including positive behavioral interventions and supports and other methods for preventing and stopping problem behaviors.

In March of 2012, The Office for Civil Rights in the U.S. Department of Education released data from the 2009-10 school year that shows that tens of thousands of school-aged children were secluded or restrained. The Department’s data are from 72,000 schools that educate 85 percent of the nation’s students. It shows that 70 percent of students subjected to the techniques have disabilities. There are no current federal standards on the use of the techniques in schools.

The Arc supports the Keeping All Students Safe Act, introduced by U.S. Senator Tom Harkin of Iowa and U.S. Representative George Miller of California, to allow the use of physical restraint only when someone is in danger of being harmed, while ensuring that personnel receive proper training, that parents are aware of any restraint or seclusion used with their children and that the most dangerous types of restraint and seclusion are eliminated.

Do You Want to Be a Presenter at Next Year’s Convention?

Did you have a great time at convention this year but leave wishing you could have participated in a bigger way? Well you are in luck because we are currently seeking proposals for innovative, motivating, and interactive presentations for our 2013 National Convention in Bellevue, Washington. Next year’s theme “Achieving Momentum” reflects The Arc’s continuing progress and forward movement. Each year, we are growing not only as an organization but as a grassroots movement working in communities across the country to promote our mission. Utilizing new technologies and innovative programs, we are extending our reach and more importantly making more of an impact.

Please keep in mind that concurrent sessions will be held between August 2-4, 2013. As a presenter, you must be available on these dates. We encourage self-advocate participation in all sessions as participants and presenters. Submit your application using this form.

The deadline for submission of presentation ideas is February 1, 2013. Selection of presentations will take place on or about March 29, 2013.