Breast Cancer Doesn’t Discriminate!

Breast cancer is second leading cause of cancer deaths among women.  However, if found early breast cancer is also one of the most treatable cancers.  These statics relate to ALL women, whether you have a disability or not, which is why it is so disconcerting that studies have shown that women with disabilities are much less likely to receive regular mammograms.  Receiving routine check-ups and screenings are essential to finding these types of cancers early on when they are treatable.  It is recommended that women over the age of 40 receive a mammogram every year.  If you are a woman below the age of 40, but have a history of breast cancer in your family it is also advised that you start getting screened earlier.

There are no proven reasons as to why women with disabilities have less frequent screenings, but many times we are so focused on “treating the disability” that annual check-ups and appointments to screen for common diseases and conditions can get pushed to the side as less of a priority. Also, sometimes medical facilities and the equipment used for screenings such as mammaograms are not always as accessible as they need to be.

Educating women with IDD, families and physicians is essential to help raise awareness of the importance of early detection.  To lower your risk of getting breast cancer it is important to control your weight and exercise, limit the amount of alcohol you drink and know your family medical history.  If you provide services to people with disabilities, teaching those you care for to perform an at home self breast exam can improve the changes of discovering  lumps orchanges, such as tenderness, skin texture and color or enlargement of pores, that can indicate a problem.

HealthMeetPrograms, such as The Arc’s HealthMeet project and the Women Be Healthy program, offer information and resources for women with disabilities and their caregivers to learn more about the facts behind the need to receive these screenings.  Visit The Arc’s HealthMeet Webinar page to view our past webinar detailing results from the Women Be Healthy study.  Remember to advocate for the women in your life by supporting them to understand and receive these preventative screenings.

A New Affordable Care Act Resource

The Arc is excited to be part of the National Disability Navigator Resource Collaborative (NDNRC) a new resource for people helping the uninsured to gain coverage through the health insurance marketplaces.  The collaborative is led by the American Association on Health and Disability (AAHD) and is supported by a one-year grant from the Robert Wood Johnson Foundation.

The Collaborative intends to develop training and technical assistance materials to respond to the need for cross disability training for people who are helping with the enrollment process.  The Collaborative will address issues particularly important to people with disabilities such as the interplay between the private marketplaces, Medicaid and Medicaid alternative benefit plans, the need to carefully compare plans especially in the rehabilitation and habilitation benefits, the pharmacy benefits and mental health and substance abuse parity.

The funding for this project is scheduled to begin this week and the first meeting of the advisory organizations will take place in late October.  The Arc recognizes the critical need for this work and looks forward to being a part of the effort.

Myths and Facts: The Convention on the Rights of Persons with Disabilities (CRPD)

#CRPDFor the last two years, The Arc has been working with numerous disability advocacy groups to garner support for the Convention on the Rights of Persons with Disabilities (CRPD), which will promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by persons with disabilities across the globe. There are many misconceptions about the CRPD, and we would like to clarify some of the most common myths and facts.

Myths and Facts About the CRPD:

Myth #1:  Sovereignty will be lost if the treaty is ratified
FACTS: Sovereignty means that the U.S. is protected as an independent governing body and no outside organization (like the UN) or another country can compel the U.S. to do anything. The same RUD (RUD = legal binding condition added to treaties) is attached to the Disability Treaty that is attached to all human rights treaties passed by the U.S. Senate in order to protect U.S. sovereignty ensuring that in no way can the treaty compel the U.S. to do anything and that any changes in law would have to go through our own traditional legislative procedures.

Myth #2: The treaty will require funding and support for abortion
FACTS: Abortion is not mentioned in the treaty but opponents of the treaty  lead folks to think it is.  There is nothing in this treaty that changes abortion rights in the U.S. It simply states that people with disabilities should have the same access to health care as people without disabilities. It is a statement of non-discrimination NOT a change in U.S. law or policy.

Myth #3: The treaty will take away homeschooling/parental rights
FACTS: The CRPD is a non-discrimination treaty that does NOT change our law but confirms our commitment to disability rights and allows us to impact disability rights globally. That means NO changes to U.S. laws covering parental rights laws or homeschooling. Read this news article to learn more.

The Agreement to Re-Open the Federal Government and Raise the Nation’s Debt Ceiling – What Does it Mean to The Arc?

The Arc is relieved that Congress reached a last minute agreement to reopen the federal government and avoid defaulting on our debts.  The government shutdown had already put in jeopardy services and supports that people with intellectual and developmental disabilities (I/DD) rely on, and the narrowly averted default would have resulted in an economic crisis in our country and around the world that would have affected all citizens.   However, despite this temporary victory, we recognize the very difficult challenges that lie ahead for the disability community in the next few months.

What is in the Agreement?  The measure, which passed by comfortable margins in both chambers and was signed shortly afterwards by President Obama, has five key provisions:

  1. reopening of the federal government through January 15 at sequestration levels (the approximately 5% automatic, across-the-board spending cuts for discretionary program);
  2. an extension of the debt limit until February 7 and a provision that requires a proactive vote to disapprove extending the debt limit, as opposed to having regular votes to raise it;
  3. establishment of a House-Senate budget conference committee to come up with long-term spending plans by December 13;
  4. a requirement for income verification for recipients of subsidies under the Affordable Care Act’s newly-established health insurance exchanges; and
  5. back pay for furloughed federal workers.

How does this impact The Arc?  The budget conference committee is a return to a more normal way of doing business in the Congress.  However, it does mean that everything is on the table for consideration, including  proposals harmful to people with I/DD that have surfaced in previous budget proposals.  Some of these have included cuts to entitlement programs that people with disabilities rely on for their health and economic security, such as block granting Medicaid and dramatically cutting spending for the program, turning Medicare into a voucher program and cutting payments to doctors, and reducing the costs of living adjustments for Social Security and other programs through the adoption of the “chained” consumer price index (CPI).  Discretionary programs (which include disability-related programs such as housing, education, and employment) also have been targeted for further cuts.   On the other hand, the budget conference committee leadership already met, with some leaders stressing that they must find common ground.  Learn more about the budget conference at Politico.com.

What Can The Arc Do?  The Arc and our network of advocates must be prepared to respond if the budget conference committee begins to seriously consider “entitlement reform,” which mostly consists of cuts and harmful changes to Medicaid, Social Security and its disability programs, and Medicare, as well as threats to funding for critical discretionary programs.  The Arc will monitor this closely.  Learn more about how to get involved by signing up for our Action E-List.

The Arc in Nevada and People First of Nevada Announce a New Joint Venture

Reno, NV – The Arc in Nevada and People First of Nevada are proud to announce a new joint venture funded by the Nevada Governor’s Council on Developmental Disabilities (DD).  This exciting project aims to provide people with developmental disabilities living in the state of Nevada with information and skills necessary to participate in advocacy and policy making decisions through expanding an effective statewide self-advocacy organization – People First of Nevada – that is led by people with developmental disabilities.

The Arc has years of experience creating movements of social change, and training people with DD in ways that supports their lives. In 2011, The Arc created the National Council of Self Advocates in response to the need to fully include people with DD to guide The Arc’s direction and to provide self-advocacy training, leadership development, and opportunities to be part of a national self-advocacy movement that is grounded in local and state grassroots efforts.  This effort in Nevada is a natural extension of those efforts.

“People First is excited to join forces with The Arc in Nevada and to start new ventures together,” said Santa Perez, Self-Advocacy Coordinator for The Arc in Nevada.

People First of Nevada is a self-advocacy group run by and for individuals with developmental differences throughout Nevada. People First works to support the reality that people with developmental disabilities have the right to make their own decisions and to live self-determined lives.

This joint project will include efforts to recruit and engage new people with DD to the Nevada self-advocacy movement. Participants will be provided with leadership training and have opportunities to develop new self-advocacy skills and be among the upcoming generation of new leaders. This training will provide information on how to grow an organization in financial terms, and also in terms of solid leadership and governance strategies.

For more information about this project, visit either The Arc in Nevada’s website at www.thearcnevada.org, or People First of Nevada’s website at www.peoplefirstofnv.org.

The Arc in Nevada is funded by the Nevada Governor’s Council on Developmental Disabilities to support expanding the capacity of People First of Nevada as a strong, sustainable organization able to expand the leadership and impact of self-advocates (people with developmental disabilities) in their communities across Nevada.

The Arc Responds to Warren Hill’s Appeal Denial by the Supreme Court

The Arc released the following statement following news that the United States Supreme Court declined to consider Warren Hill’s appeal to halt his execution because he has intellectual disability (ID). Hill’s lawyers filed the petition directly to the Supreme Court, stating that they had evidence proving Hill has ID. In 2002, the Supreme Court ruled in the Atkins v. Virginia case that executing inmates with ID is unconstitutional. However, in Georgia (where Hill is on trial), ID must be proven by the defendant “beyond a reasonable doubt,” the strictest standard in the country.

“We are extremely disappointed that the Supreme Court has chosen not to accept Warren Hill’s appeal. The high court was the last chance for a man unjustly sentenced to death, and their inaction will cost Mr. Hill his life.  They failed to order a halt to the execution despite their prior ruling in Atkins v. Virginia that established that it is unconstitutional to execute an inmate with intellectual disability,” said Peter V. Berns, CEO of The Arc.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD), has been involved in this case through filing an amicus brief before the Supreme Court in earlier proceedings, and supporting Hill’s defense team through letters to the Georgia Board of Pardons and Paroles and the District Attorney urging his sentence be commuted to life without parole.

 

Another Media Hit on Social Security Disability Programs – Get the Facts

60_Minutes_logoSunday night, CBS’ 60 Minutes aired a piece they dubbed “Disability, USA” in which they portrayed the Social Security disability programs as exploding over the last few years and in danger of running out of funds. We’re deeply concerned that to press the panic button on the funding stream for Social Security Disability Insurance (SSDI) is irresponsible, and we’re saddened to see 60 Minutes join other national media in perpetrating myths and inaccuracies.

Members of The Arc and the individuals and families we serve know Social Security is an essential lifeline that keeps millions of Americans with significant disabilities from homelessness and deep poverty.  About 1 in 5 Americans live with a disability, and this report failed to show the importance these programs play in many of their lives.

It’s disappointing to see reporting that puts people who rely on these programs to survive on edge, when the truth is much less sensational but also much more interesting.  Here are three important facts to keep in mind:

1. It’s incredibly difficult to qualify for Social Security disability benefits.  The Social Security Act’s disability standard is one of the strictest in the developed world.  Fewer than four in ten applicants are approved, even after all stages of appeal.  Many are terminally ill: 1 in 5 male SSDI beneficiaries and nearly 1 in 6 female SSDI beneficiaries die within 5 years of receiving benefits.  Due to the complexity of the process, many people who appeal seek help from an attorney or representative who is paid by the claimant out of past-due benefits – not out of the Disability Insurance Trust Fund, as suggested by 60 Minutes. As noted by the Consortium for Citizens with Disabilities, the fee process for Social Security claims is highly regulated and the average fee in most cases is less than $3,000.

2. For those of us paying attention, the growth in Social Security Disability Insurance (SSDI) is not surprising – in fact, it has been projected since 1994.  According to Social Security’s Chief Actuary, the growth in SSDI (from 1980 to 2010) is mostly the result of several factors: substantial growth in the U.S. population; the baby boomers aging into their high-disability years; and women entering the workforce in large numbers in the 1970s and 1980s so that more are now “insured” for SSDI based on their own prior contributions.

3.  The DI trust fund will need to be replenished in 2016 – but this is not a new development, or an unprecedented one.  Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the OASI (retirement) and DI (disability) trust funds – about equally in both directions – some 11 times to account for demographic shifts. In 1994, the last time such reallocation occurred, SSA actuaries accurately projected that similar action would next be required in 2016.

The 60 Minutes program also reported on fraud in the system that occurred in West Virginia and Kentucky.  The Social Security Administration – and advocacy organizations like The Arc – takes fraud very seriously because it harms the millions of honest people who rely on the program as a lifeline to basic necessities, and it hurts the integrity of the program.  Anytime you suspect fraud is occurring, you can contact the SSA hotline at 1-800-269-0271 or report it online.  We all want to root out the bad actors and focus the program on those that need it most – people with disabilities who without the SSA, would be homeless, hungry, and cut off from access to life saving medicines and services.  But it’s also important to keep in mind that most experts agree that fraud is very rare. Former SSA Commissioner Michael J. Astrue, appointed by President George W. Bush, estimates that fraud constitutes less than 1 percent of all applicants.

Finally, we believe that resources are vital to ensuring that SSA can properly administer its disability programs. The continued impact of underfunding has had serious implications, including limiting the agency’s ability to perform vital watchdog functions. And the current government shutdown is having even more dramatic effects.

Here are some additional resources for learning more about the facts on the Social Security disability programs:

Reject Piecemeal End to the Government Shutdown and Protect People with Disabilities

Washington, DC – The Arc calls on Congress to reject the piecemeal approach to ending the government shutdown and urges lawmakers to put an end to the Federal Government shutdown immediately for all Americans.

“People with intellectual and developmental disabilities rely on numerous federal government programs to live, learn, and work in their communities.   We cannot allow Congress to cherry pick which federal programs continue operations based on arbitrary criteria.  We are all in this together,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.  “Congress must adopt appropriations legislation now that does not lock in the harmful, low spending levels from the sequester or defund or delay the Affordable Care Act.”

The Declaration: Just Do One Thing

For the last few days, I’ve been at the Coleman Institute Conference on Technology for People with Cognitive Disabilities near Boulder, Colorado . I’m proud that The Arc helped to launch the Declaration of Rights for People with Cognitive Disabilities to Technology and Information Access, a stunning Jeffersonian document written by a small group of dedicated thought leaders in technology and cognitive disabilities.  This document, which is available in several versions to ensure equal access to diverse readers at http://www.colemaninstitute.org/declaration, firmly reminds the United States and the world that communications platforms are public domains and therefore need to be accessible for all.

Why is this so important?  Imagine, if you will, being unable to use your cellphone, computer and internet, ATMs and electronic banking, online job application forms, online insurance, health information, emergency information, weather, local community information… and anything else you access through electronic or wireless means.  Imagine that while you might have the equipment, the languages and instructions that are used in all of these platforms are written in a confusing language that you don’t understand, maybe in words that are too small or which you can’t see clearly and which demand speed in processing that are too fast for you to react to. Now imagine (this is the easy part) that these platforms are how the world around you communicates with and operates upon. But because the platforms upon which the communications are built are not written into your language and communication needs, there is no way for you to move in this social space.  You are, as a result, wholly dependent on someone else to help you translate the information you need to know.  This is largely the current reality for people with cognitive disabilities in terms of technology and information.

People with cognitive disabilities include those with intellectual disabilities, Alzheimer’s, traumatic brain injury, some psychiatric disorders.  While these impairments are the reality for this population, it does not mean that they should by virtue of their impairment be forever excluded from the public communications domain or marginalized as full citizens of this world.  They deserve equal access to technology and information that support public communication and which have become a mainstay of social interaction.  The Declaration states without apology that technology and information must be accessible to all, not just to those who can read or process or be physically adept in seeing, hearing, and typing to interact with this system. There is a sense of urgency to this because cloud-based communication platforms are solidifying rapidly, and if we don’t take action now, people with diverse communication needs risk being forever excluded.

And we can’t let that happen.

The Arc has been working on this Declaration with other thought leaders in cognitive disabilities and technology to ensure that the needs of people with intellectual and developmental disabilities are included in this new social movement.  The Arc and now 57 organizations and even more individuals have formally endorsed the Declaration.  I urge each of you to go online and read it yourself. The more people sign on, the more visibility, awareness, and power this movement will gain to advance accessibility in the new cloud based communications and information field.  Here’s one more thing: Earlier this week, our small group of thought leaders went around the room and promised to do at least one thing to advance this social movement.  As you read this, I ask you to do one thing as well to help us advance this important cause.  Perhaps you will review the Declaration and endorse it, or perhaps to send this to your personal networks.  Or maybe you can print it off and hang it in your office or send it to your child’s teacher or bring it to your local wireless communications provider.  Maybe you’ll write your own blog, post it on Facebook, tweet it out, talk about it in a staff meeting, or simply think about ways to help while you tend your late summer garden… the list of possibilities of what you can do is endless, just as the possibilities of how this modest document might change the world for people with cognitive disabilities.

Do one thing.

Help us change the world.

We are The Arc.

The Arc Endorses the Declaration on the Rights of People with Cognitive Disabilities to Technology and Information Access

People with cognitive disabilities have an equal right to technology and information access. A formal declaration on this right was officially unveiled at the Thirteenth Annual Coleman Institute National Conference on Cognitive Disability and Technology, held October 2, 2013, in Broomfield, Colorado. The Rights of People with Cognitive Disabilities to Technology and Information Access is a statement of principles: the rights of ALL people to inclusion and choice in relation to technology and information access.

“Cognitive disabilities” include intellectual disability, autism spectrum disorders, severe and persistent mental illness, brain injury, stroke, Alzheimer’s disease and other dementias. People with cognitive disabilities are estimated to comprise over 60% of the world’s total population of people with disabilities. The vast majority of people with cognitive disabilities have limited or no access to comprehensible information and usable communications technologies.

“The formal declaration is being presented at a time when the pace of the digital age is accelerating rapidly. Access to technology and information access is essential for community and social participation, employment, education, health, and general communication. Advocates for people with cognitive disabilities may use this declaration to stimulate greater attention nationally and worldwide to the possibilities now at hand for people with cognitive disabilities through technology while promoting their rights as citizens to access to it,” said David Braddock, Professor of Psychiatry and Executive Director of The Coleman Institute on Cognitive Disabilities at the University of Colorado.

“Technology can expose individuals with intellectual and developmental disabilities as well as those with cognitive disabilities to a new world. The advantages of technology are something that every individual deserves to have equal access to, which is why The Arc supports the Declaration on the Rights of People with Cognitive Disabilities to Technology and Information Access. Technology can be particularly beneficial to individuals with disabilities as it can serve as a communication device, assist in education, and overall promote independence,” said Peter Berns, CEO of The Arc.

To read the complete declaration, and to personally endorse it, visit the Coleman Institute website, at: http://www.colemaninstitute.org/declaration