Zika – We All Have Skin in This Game

Some public health crises capture our attention more than others.  A few years back, the phones were ringing off the hook on Capitol Hill about Ebola.  But not so for the Zika virus, we are hearing from Congressional offices.  Is this because we think that Zika will only affect women who are pregnant?  Or just those who live in southern states?  Are we not understanding that this virus could potentially quickly spread in local communities or that people in the south who are at greatest risk right now travel to other parts of the country?

Such a false sense of immunity could cost us dearly.  Studies are rolling in and, taken together, are painting an alarming picture.  According to a study released last week, two million pregnant women in the U.S. could contract the virus by November while another study finds that 29% of Zika-infected women gave birth to babies with adverse outcomes, including stillbirth, microcephaly, and other serious health problems.  Another found that microcephaly alone occurs in up to 13% of babies born to their mothers who became infected during their first trimester.  And this is only what we do know.  Still unknown are, among other things, the long-term effects of Zika on adults and children who contract the virus after birth.  “We still don’t know yet the full rainbow of complications that this virus may produce,” according to the director of communicable diseases for the Pan-American Health Organization.

If we don’t act now, the implications could be dramatic in both the short and long term.  For instance, the travel industry could be decimated in the southern coastal states this summer as infection rates and corresponding fear rise.   Further down the road, state Medicaid programs could see a surge in demand for services for not just people with microcephaly, but those with the still unknown other disabilities that may be significant and lifelong.

Congress left for its Memorial Day recess before having finalized an emergency spending bill for Zika prevention.  When it reconvenes this week, it is imperative that Members hear from their constituents who understand that that Zika prevention is truly a national and urgent priority. Stay up to date on this issue and many others impacting people with disabilities by signing up for our Disability Advocacy Network – be in-the-know and take action when needed!

Blaze a Trail to Future Planning

In the spirit of this year’s Older Americans Month theme, “Blaze a Trail,” The Arc recognizes the many parents of adults with intellectual and developmental disabilities (I/DD) who fought for decades to raise their children at home, to realize their rights to free and appropriate public education, and for recognition as valued contributors to the community. The Arc is committed to supporting these aging caregivers and their adult sons and daughters with I/DD to develop a roadmap for the future.

Future planning is important for all families, but it can be especially challenging for the almost 1 million families in which adults with I/DD are living with aging caregivers.  In two-thirds of these families, there is no plan in place for the future. Many of these families have no connection to the disability community or the disability service system. It is our role to support them to overcome the fear of planning and provide them the information and resources they need to create future plans.

To support these trailblazing families, The Arc of the United States launched the Center for Future Planning™ in 2014. Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by aging caregivers, their adult sons and daughters, and other family members and supporters.

The Center’s website provides reliable information and assistance to individuals with I/DD, their family members and friends, staff at chapters of The Arc, and other disability professionals on:

  • person-centered planning
  • supported decision-making and guardianship
  • housing options
  • financial planning (including public benefits, special needs trusts, and ABLE accounts)
  • employment and daily activities
  • making social connections
  • providing information if an urgent need arises

During Older Americans Month, here are some ways you can access more help:

  • Read more information about future planning and see how other families have planned.
  • View The Arc’s webinar on supports and services for aging caregivers.
  • Visit The Arc’s new Build Your Plan™ online tool that enables families to create accounts and begin to build their plans within the Center for Future Planning™. Check out the demonstration webinar to learn more about how to navigate Build Your Plan and encourage families to begin creating plans.
  • Encourage families you know to start the process and to get support in their communities. Chapters of The Arc around the country can provide guidance and information about local resources.  Families can also identify professionals in their communities to help them create and implement future plans through The Arc’s Professional Services Directory.
  • In addition, Area Agencies on Aging (AAA) can help with accessing services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit ncoa.org for more information about additional benefits available to seniors.

Supporting aging caregivers and adults with I/DD is an ongoing process and is possible with the help of other family members, friends, the community and professionals. It’s important to work together to develop a plan that will ease the stress of future transitions. You can contact The Arc’s national office at (202) 202-617-3268 or futureplanning@thearc.org for more help.

The Arc’s Letter to Gary Owen on his Comments Offensive to People with Disabilities

May 12, 2016
Dear Mr. Owen,

I am writing in regard to your Showtime Special “Agree with Myself”
and its flagrant mockery of people with intellectual and developmental
disabilities (I/DD). As the nation’s largest organization serving and advocating
with and for people with I/DD, with a network of more than 650 chapters across
the country, we’ve received many complaints about the content of this
program from people who are truly outraged. Having watched the offensive clip
myself, I felt compelled to contact you to voice our concerns.

The segment I am referring to includes you using the word ”retarded” to
describe your cousin with intellectual disabilities. People with I/DD have made
clear for decades that they consider the ”r-word” to be demeaning and don’t
accept it being used to describe them. They view it as analogous to the use of
the ”n-word” to describe a person who is black. For them it is a slap in the face
that reminds them of all the verbal and physical abuse and discrimination they
have experienced on a daily basis. What they want is respect.

In addition to the use of this slur, the content of your act, your antics
and the tone you took are equally unacceptable. Your sketch about your cousin,
her lover and her friends is demoralizing and attacks individuals with I/DD on
multiple levels, from their speech to their sexuality. You dehumanize them for
laughs, not taking into account the dark history individuals with disabilities have
faced in our nation. Individuals with disabilities have suffered through decades
of discrimination and humiliation including forced sterilization, abuse, and
institutionalization.

The fact of the matter is that your special contains callous verbal
violence against a minority group. I hope you can see that this goes beyond an
issue of an artist’s freedom of speech – this is hate speech. The Arc, Special
Olympics, dozens of other disability organizations, and thousands of advocates
across the country are united in our outrage that you and Showtime have failed
to pull this program from On Demand or edit out the offensive segment. We
hope you have dropped it from your live performances.

IVlr. Owen, perhaps you don’t understand that 85 percent of people
with I/DD are not employed, when they could be working but no one will hire
them. Or maybe you are unaware that people with disabilities are three times
more likely to be the victim of violent crimes and four times more likely to be
victims of sexual violence. Fifty-two percent of students with I/DD leave high
school without a regular diploma which greatly limits their prospects for
employment and post-secondary education. Public attitudes and lack of
understanding of people with I/DD, and lack of appreciation for their humanity,
is perhaps the single biggest reason for the challenges people with I/DD face in
being fully included, participating and being treated fairly in their communities.

You could have been part of the solution, as has your fellow comedian
Amy Schumer, but instead you contribute to the problem. Recently, 50 Cent
knew when to apologize after stepping over the line, why not you?

I welcome the opportunity to discuss this matter with you and to
introduce you to people with I/DD who are quite different from the caricature
you provided. As you tour the country in the coming months, we would be
happy to connect you with local chapters of The Arc that will arrange for you to
meet people with I/DD who are leading full lives in and are contributing to their
communities.

Sincerely,
Peter V. Berns
CEO, The Arc

Proposed Ban of Electrical Stimulation Devices An Overdue Step Forward for Dignity and Respect for People with Disabilities

By: Nicole Jorwic, Director of Rights Policy

Every behavior is a form of communication. This is a truth that must be remembered, as we advocate for the civil rights for individuals with intellectual and developmental disabilities (I/DD). Even self-injurious or aggressive behaviors are an attempt by an individual to demonstrate something. Supports should be in place to draw out that communication, not shock it or punish it away. This is why the recent proposed rule from the Food and Drug Administration (FDA) banning the use of electrical stimulation devices (ESD) to treat these forms of behavior is so important.

Per the FDA’s proposed rule, the use of electrical stimulation devices pose the risks of depression, fear, anxiety, panic, learned helplessness, and are associated with the additional risks of nightmares, flashbacks, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and withdrawal from usual activity. The science verifying those risks is clear, while there is no scientific proof that the use of electric shock has benefits in the short or long term.

The science has been clear for years and for decades The Arc has provided testimony at hearings on this issue, submitted comments, and filed amicus briefs encouraging the ban of these devices. Instead of using harmful and demoralizing ESDs, the focus of treatment for all individuals with I/DD who cannot use their voices or other forms of communication to express their wants and needs, must be on changing environmental factors. This will allow the roots of challenging behaviors to be found and allow the individual to discover alternative behaviors that can be used to meet their needs.

The Arc has adopted position statements opposing the use of aversive procedures since at least 1984. Our current position statement on Behavioral Supports developed jointly with the American Association on Intellectual and Developmental Disabilities (AAIDD) and adopted by both organizations in 2010, states in part:

Research indicates that aversive procedures such as deprivation, physical restraint and seclusion do not reduce challenging behaviors, and in fact can inhibit the development of appropriate skills and behaviors. These practices are dangerous, dehumanizing, result in a loss of dignity, and are unacceptable in a civilized society.

The Arc and AAIDD are opposed to all aversive procedures, such as electric shock, deprivation, seclusion and isolation. Interventions must not withhold essential food and drink, cause physical and/or psychological pain or result in humiliation or discomfort.

Our position statement on Education, which was adopted by the Congress of Delegates in 2011, states in part:

In order to provide a free, appropriate public education for students with I/DD, all those involved in the education of students with I/DD must:

  • Ensure that students with disabilities are not subjected to unwarranted restraint or isolation or to aversives.

The Arc is strong in its belief that it is the responsibility of government to protect individuals with disabilities from mistreatment. Using aversive procedures to change behaviors of individuals with intellectual and developmental disabilities is dangerous, dehumanizing, a violation of civil rights, results in a loss of dignity, and is unacceptable in a civilized society.

The Arc applauds the FDA in its effort to ban the use of devices that emit electric shock as a means of modifying the behavior of individuals with intellectual and developmental disabilities.

 

Senate Acts on Zika Funding; The Arc Urges House to Step Up

Washington, DC – With a new public health threat on the horizon for our country, yesterday the U.S. Senate finally acted to provide some of the funding necessary to address the Zika virus. With repurposed funding running out and summer quickly approaching, The Arc and our national network of advocates are urging the House to step up and pass a bill that provides funding to address this issue.

“The clock is ticking, and with every passing day, we are less and less prepared to face this impending public health crisis. We have the ability to mitigate the impact of this mosquito- carried virus, with an investment in mosquito reduction, accelerated vaccine development, and better testing. But Congress has been wasting time, playing politics with public health. Thankfully, the Senate’s action yesterday to approve a down payment on addressing this issue is a step in the right direction. We urge the House to follow suit quickly,” said Peter Berns, CEO of The Arc.

In February, the White House asked for $1.9 billion for Zika vaccine development, better testing, and mosquito reduction. With no action taken by Congress, in April the White House transferred $589 million from money set aside to fight Ebola and other problems to work on Zika prevention efforts. But that’s far short of the amount health officials say they need to be effective and that funding will run out at the end of June. Yesterday, the Senate approved $1.1 billion to combat Zika this year and next year.

While Zika is usually harmless to adults, some women infected with Zika while pregnant give birth to babies with severely disabling brain injury, including microcephaly. Many of The Arc’s more than 650 chapters provide supports and services to families and people with a range of disabilities, including severe disabilities.

The Arc has long held a position on the prevention of intellectual and developmental disabilities (I/DD), supporting our national efforts to continue to investigate the causes, reduce the incidence and limit the consequences of I/DD through education, clinical and applied research, advocacy, and appropriate supports. We firmly believe that prevention activities do not diminish the value of any individual, but rather strive to maximize independence and enhance quality of life for people with I/DD.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

DOL Releases New Overtime Final Rule-Including Non-Enforcement for Some Medicaid Providers

By: Nicole Jorwic, Director of Rights Policy

The Department of Labor released the much anticipated final Overtime rule today, with the an effective date of December 1, 2016. Along with the rule, DOL announced a non-enforcement policy for providers of Medicaid-funded services for individuals with intellectual or developmental disabilities in residential homes and facilities with 15 or fewer beds. The full policy will be published in the Federal Register next week. The non-enforcement policy will be in effect from December 1, 2016 (when the final rule goes into effect,) until March, 2019. In a call between The Arc staff and DOL and it’s Wage and Hour division, it was highlighted, that this non-enforcement timeframe aligns with the implementation timeline of the Home and Community Services final rule. This will allow HCBS Medicaid providers, who qualify, to prepare for the implementation.

From the DOL Website: Key Provisions of the Final Rule

The Final Rule focuses primarily on updating the salary and compensation levels needed for Executive, Administrative and Professional workers to be exempt. Specifically, the Final Rule:

  1. Sets the standard salary level at the 40th percentile of earnings of full-time salaried workers in the lowest-wage Census Region, currently the South ($913 per week; $47,476 annually for a full-year worker);
  2. Sets the total annual compensation requirement for highly compensated employees (HCE) subject to a minimal duties test to the annual equivalent of the 90th percentile of full-time salaried workers nationally ($134,004); and
  3. Establishes a mechanism for automatically updating the salary and compensation levels every three years to maintain the levels at the above percentiles and to ensure that they continue to provide useful and effective tests for exemption.

Additionally, the Final Rule amends the salary basis test to allow employers to use nondiscretionary bonuses and incentive payments (including commissions) to satisfy up to 10 percent of the new standard salary level.

DOL has released several documents for non-profits including guidance and a shorter fact sheet. Additional resources can be found on DOL’s website. DOL will also be hosting several webinars to provide additional information: register here.

Remembering Adonis Reddick

WhonPhoto_Oct5Cam1_309It is with heavy hearts we share the news that Adonis Reddick passed away last week. Adonis was an amazing and powerful advocate and we will remember him as a dear friend to The Arc.

Adonis was a powerhouse when it came to advocating for people with disabilities in St. Louis, and his work inspired change statewide. The vision of a better world for individuals with disabilities was what drove him and that was reflected in everything he did.

Adonis never sat on the sidelines, he was constantly working.  He served as a member of St. Louis Arc’s Human Rights Committee, the St. Louis Self Determination Collaborative, The Coalition on Truth in Independence, and was active Partners in Policymaking at the state level. In addition to his work with these groups he co-founded of the Association of Spanish Lake Advocates (ASLA), a group committed to an accessible world based in full inclusion. Hard to imagine that in addition to all of this he also actively pursued opportunities to speak to local governments, agencies, businesses, and community leaders to ensure that the voices of those living with a disability were heard.

His unwavering commitment and passion for his work was as infectious as his smile.  Where others saw barriers, he saw the opportunity for collaboration and change – one of the many reasons he was able to make such an impact.

Many know Adonis as the inaugural winner of The Arc’s Catalyst Award for Self-Advocate of the Year. These awards were created to recognize those who were trailblazing to make the future more inclusive.  We seek out the best of the best people and organizations making an impact of national significance.

At the awards luncheon, you could have heard a pin drop when Adonis was at the podium. He captivated us with his energy. His energy became the room’s energy when he said:

“Whatever you want in this world you can put in or take out. Together we can make change happen.”

He put everything in, and we thank him for making many great things happen.

The Arc’s Letter to Showtime on Offensive Comedy Special

May 6, 2016

Mr. David Nevins
President and Chief Executive Officer
Showtime Networks Inc.

Dear Mr. Nevins,

I am writing in regard to Gary Owen’s Showtime Special “I Agree with Myself” and its flagrant mockery of people with intellectual and developmental disabilities (I/DD). As the nation’s largest organization serving and advocating on behalf of people with I/DD, with a network of more than 650 chapters across the country, we’ve received many outraged complaints about the content of this program. Having watched the offensive clip myself, I felt compelled to contact you to voice our concerns.

The segment I am referring to includes Gary Owen using the word “retarded” to describe his cousin with intellectual disabilities. This term is outdated, hurtful, and people with I/DD have soundly rejected it and, for decades, have been advocating for people to respect them as fellow human beings and cease using that term to describe them.

In addition to the use of this slur, the content of his act and tone he took are even more upsetting. His bit is demoralizing and attacks individuals with I/DD on multiple levels, from their speech to their sexuality. He dehumanizes them for laughs, not taking into account the dark history individuals with disabilities have faced in our nation. Individuals with disabilities have suffered through decades of discrimination and humiliation including forced sterilization, abuse, and institutionalization. The use of the r-word has been rejected by the disability community because it is a reminder of the discrimination our community has endured.

It seems that the media is more frequently picking and choosing when to invoke the First Amendment. I hope you can see that this goes beyond an issue of an artist’s freedom of speech – this is hate speech. The fact of the matter is that Owen’s special contains callous verbal violence against a minority group. I can’t help but wonder if Owen targeted a specific race or gender, would swifter action be taken?

I know that earlier this week you spoke with Tim Shriver, Chairman of Special Olympics International, about this matter. The Arc stands with Special Olympics, as well as dozens of other disability organizations, and thousands of other advocates across the country who are united in our outrage that Gary Owen and Showtime have failed to pull this program from On Demand or edit out the offensive segment.

I welcome the opportunity to discuss this matter with you or Mr. Owen. On behalf of millions of people with I/DD and their families, I urge Showtime to take appropriate action.

Sincerely,

Peter V. Berns

CEO, The Arc

Pathways to Justice™ Grants Awarded for 2016-2017

The Arc of Spokane Disability Response Team

Darci Ladwig, Stacy Ceder, Megan Williams, and Brian Holloway work collaboratively to lend support to The Arc of Spokane’s Disability Response Team.

This month, six chapters of The Arc each received a $2,000 Pathways to Justice™ grant from The Arc of the U.S.  Funded by DOJ’s Bureau of Justice Assistance, The Pathways to Justice program was initiated in 2013 by The Arc’s National Center on Criminal Justice and Disability® (NCCJD) with the goal of developing strong and lasting relationships between criminal justice professionals and the disability community.  These partnerships then work together to close gaps in services experienced by people with disabilities and their families at all stages in the criminal justice system. This year’s recipients are The Arc of New Mexico; The Arc of Texas; Berkshire County Arc (MA); The Arc of Loudoun County (VA); The Arc of Ventura County (CA); and The Arc of Winnebago, Boone and Ogle Counties (IL).

The Pathways to Justice training focuses on three target audiences: law enforcement, victim service providers, and attorneys. Using evidenced-based models and promising practices from the mental illness and victim advocacy fields (such as establishing a Disability Response Team), the program raises participant awareness of intellectual and developmental disabilities (I/DD) and urges communities to find solutions together.  Upon completion of the one-day training, criminal justice and disability professionals, people with disabilities and others work together to begin creating site-specific, holistic solutions to challenges their community faces when their citizens with disabilities enter the criminal justice system as either victims or defendants/suspects/offenders.

Piloted at five chapters of The Arc between 2013-2014, NCCJD incorporated rich feedback to create an effective tool. Chapters commented on how important it was to be able to bring the different criminal justice professionals together in one room to discuss the topic. In some localities, this had never happened before. The Arc of Spokane’s staff commented, “NCCJD and Pathways to Justice provided the format to make connections and create working relationships with criminal justice professionals and disability advocates. Building our Disability Response Team out of these connections has allowed us to begin identifying and filling the gaps in our criminal justice system for people with intellectual and developmental disabilities.”

Leigh Ann Davis, The Arc’s Program Manager for Justice Initiatives, commented, “NCCJD is excited to award our 2016-2017 Pathways to Justice grantees.  Some chapters are already addressing this issue in creative ways, but this funding will deepen our capacity to advocate for a population of people who often have literally nowhere else to turn for help.  These trainings not only teach the tools criminal justice professionals need, but also inspires police, attorneys and victim advocates to support people with disabilities, enabling them to access critical supports and services at a time when they need them the most.”

Congratulations to all the recipients!  With your help, we will continue to strengthen our criminal justice system to serve and protect people with I/DD.

 

 

 

Financial Capability Creates Independence

By Robin Shaffert, Senior Executive Officer, Individual & Family Support, The Arc

One of the four goals of the Americans with Disabilities Act is economic self-sufficiency. Yet, far too many people with disabilities continue to live in poverty. In 2015, the poverty rate for working aged individuals (16 – 64) with disabilities was 28.5%, compared to a poverty rate of people without disabilities of 12.4%; the poverty rates for children with disabilities are also disproportionately high.

There is no single reason for this high rate of poverty. Similarly, there is no single change that will end poverty for people with disabilities.  Employment rates are far too low, and often many people with disabilities who are employed are under-employed in low paying jobs.  Many people with disabilities rely on means-tested benefits to finance their supports and services. In fact, the very income and asset eligibility requirement of these benefit programs limit beneficiaries’ ability to earn income and build assets. The passage last year of the Stephen Beck, Jr., Achieving a Better Life Experience (ABLE) Act provides the first opportunity for people with disabilities to build assets without jeopardizing their benefits from means-tested programs.

Disability-related expenses often create an additional financial burden.  In families that have a child with disabilities, parents often reduce their work hours or leave the workforce altogether to care for their child with a disability, resulting in lower family income. More states and localities are enacting paid sick days and paid family leave laws, and more employers are incorporating policies that enable increased workplace flexibility.  Each of these efforts should contribute to lowering the poverty rate for people with disabilities and their families.

Proclaiming April 2016 as National Financial Capability Month, President Obama reminded us, “When every American has the tools they need to get ahead and contribute to our country’s success, we are all better off. . . . Ensuring people have the resources to make informed decisions about their finances is critical in this effort, and during National Financial Capability Month, we recommit to equipping individuals with the knowledge and protections necessary to secure a stable financial future for themselves and their families.”

Financial literacy is a critical tool in this fight to reduce poverty in the disability community.  Developing financial capability skills should be a goal for young people with disabilities throughout their school years.  In the early years, all children should be taught basic concepts related to math and money and should begin to develop decision-making skills.  As they grow, the lessons should become more complex to move them towards financial independence. An important way we can support families is to not only guide parents of children with disabilities through the public benefit system but to also help them build skills to stabilize the family’s financial situation.

The Arc and our partners in the disability community are working tirelessly to increase employment and income of people with disabilities.  For adults with disabilities, increasing financial capability is an important part of planning for a good and independent life in the community.  For more information about creating a plan to Finance the Future, visit The Arc’s Center for Future Planning.