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.

The Arc Awarded Grant from Amerigroup Foundation for Health and Fitness for All Project

Washington, DC – The Arc is pleased to announce that it has been awarded a $90,000 grant from the Amerigroup Foundation to conduct its Health and Fitness for All project at three chapters of The Arc in Texas and Tennessee. The Health and Fitness for All project utilizes the HealthMatters™ program, which is a training developed by the University of Illinois at Chicago that provides structured information on how to organize and start a tailored physical activity and health education program for people with intellectual and developmental disabilities (I/DD).

With Amerigroup Foundation’s support, three of The Arc’s chapters that are certified in the HealthMatters program, The Arc San Antonio, The Arc Greater Houston, and The Arc Tennessee, will implement the 12-week program to help increase participant’s knowledge about the importance of healthy eating and staying active.

“We are thrilled to be expanding this program with chapters of The Arc that have already demonstrated a commitment to the health and wellness of people with I/DD in their communities. The Amerigroup Foundation’s support will go a long way in supporting people with I/DD to make healthier decisions in their day to day lives,” said Peter Berns, CEO of The Arc.

According to the Centers for Disease Control, adults with disabilities have a 58% higher rate of obesity than adults without disabilities. Since The Arc started using the HealthMatters curriculum in 2012, the program has reached almost 500 participants to help them learn about healthy eating and the importance of staying active. The chapter activities being supported by Anthem, known as Amerigroup in those states, will reach a total of 150 participants.

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 665 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.

The Arc Reacts to Newly Released CDC Autism Report Showing No Increase in Prevalence in Two Years

Washington, DC – Today, the Centers for Disease Control and Prevention (CDC) released new data showing the prevalence of Autism Spectrum Disorder (ASD) remains unchanged;   1 in 68 children have been identified as having a diagnosis on the autism spectrum between 2010 and 2012.  

“While the data does not indicate an increase in autism prevalence, this does not mean that the numbers have stabilized. Previously, we have seen periods in which prevalence has remained unchanged. Between 2000 and 2002, the prevalence rate of 1 in 150 held steady, but was then followed by a dramatic rise that continued for a decade. 

“The most important thing to take away from this report is the need for early diagnosis and intervention. It is concerning that minorities, specifically black and Hispanic populations, continue to be more likely to receive a diagnosis years after their white peers. The earlier a developmental evaluation takes place, the sooner individuals and their families can begin receiving early intervention supports. Another area for improvement is access to high-quality, affordable developmental services in the community. The Arc strongly believes that all children who have been identified with autism or other disabilities deserve this access to appropriate services.

“The numbers may not have changed, but this report gives us much to think about and data to strengthen our calls to action for more resources and earlier intervention,” said Peter V. Berns, CEO of The Arc.

ASDs are a group of developmental disabilities that are often diagnosed in early childhood and can cause significant social, communication, and behavioral challenges over a lifetime.  Chapters of The Arc across the country provide services and supports for people with autism and their families.

The Arc’s national office has several programs for persons with ASD: Autism Now: The National Autism Resource and Information Center; Wings for Autism, a national airport rehearsal program for people with autism or other developmental disabilities, and their families; and The Arc@Work, a program that develops innovative workforce solutions for the government and private sector by connecting employers with talented employees with autism or other disabilities and supporting the recruitment, on-boarding, and retention process.

 

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase. 

The Arc Awarded Contribution for New Center for Special Education Advocacy

Washington, DC – The Arc is pleased to announce that it has been awarded a contribution from AT&T to create a new Center for Special Education Advocacy called TheArc@School. The center will support students with intellectual and developmental disabilities (I/DD) to graduate from high school and pursue post-secondary education and employment by improving the quality and availability of trained lay advocates to support the development and implementation of Individualized Education Programs (IEPs).

All students who qualify for special education services are legally required to have an IEP to ensure they are receiving the support and guidance necessary to successfully pursue their educational goals. The IEP process requires an annual meeting between teachers, administrators, parents and students. In the meeting, attendees discuss everything from students’ present levels of academic achievement to their future goals and any accommodations or modifications they need in the classroom.

“These discussions can be overwhelming and intimidating for parents – many parents in The Arc’s network have shared that they are hesitant to express their opinions, they feel they do not have the expertise to participate, or that they are not encouraged to participate. As a result, plans often set low expectations or lack personalization, making it difficult for students to stay on track to achieve their full potential. TheArc@School aims to improve the process,”
said Peter Berns, CEO of The Arc.

Currently, in order to make the process more manageable, some families choose to work with professional advocates. These advocates can be incredibly knowledgeable and can act as an excellent resource for parents and students, but many receive no formal training; they often become experts through their own personal experience navigating the special education system, usually as parents or teachers.

This contribution will allow The Arc to start by collecting data about current methods and practices, as little information about effective practices exists at this time. After analyzing this data to identify best practices, The Arc will disseminate this information through a comprehensive online resource center, making it easily available to parents, students, advocates, chapters of The Arc, and school administrators. The Arc will use this data on effective practices to inform planning to develop a comprehensive training effort aimed at lay advocates.

“AT&T is thrilled to collaborate with The Arc to provide a more comprehensive support system for students along with the resources they need for success,” said Nicole Anderson, executive director of philanthropy at AT&T. “The Center for Special Education Advocacy will be a key voice in making education accessible to more students.”

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 665 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.

 

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

About Philanthropy and Social Innovation at AT&T

AT&T Inc. is committed to advancing education, strengthening communities and improving lives. Through its community initiatives, AT&T has a long history of investing in projects that create learning opportunities; promote academic and economic achievement; or address community needs. AT&T Aspire is AT&T’s signature philanthropic initiative that drives innovation in education by bringing diverse resources to bear on the issue including funding, technology, employee volunteerism, and mentoring. Through Aspire, we’ve passed the $250 million mark on our plan to invest $350 million in education from 2008-2017.

The Arc Awarded National Grant to Engage in Martin Luther King Jr. National Service Day Activities

WASHINGTON, DC – The federal agency that leads national Martin Luther King, Jr. Day of Service, the Corporation for National and Community Service (CNCS), has selected The Arc and five other organizations as grantees to plan and execute volunteer projects that will unite Americans in service. The 2016 MLK Day of Service will take place on Monday, January 18, and The Arc, through select chapters, will be involved in service events throughout January where people with intellectual and developmental disabilities (I/DD) will volunteer alongside people without disabilities in an activity related to access to healthy food.

“People with intellectual and developmental disabilities have so much to offer their communities, and this day of service opportunity provides them the chance to give back.  Many perceive people with disabilities as the ones in need of service – but in reality, they are often a part of civic engagement at the state, local, and national level.  Being a part of this national community service day will shine a spotlight on what people with disabilities offer in their community,” said Peter Berns, CEO of The Arc.

Each year, hundreds of thousands of Americans participate in the annual Dr. Martin Luther King Jr. National Day of Service, the nation’s largest day of civic engagement. In 1994, Congress designated MLK Day as the first and only federal holiday observed as a national day of service, and charged CNCS with leading this effort.

Each project will serve a community that has seen an increase in unemployment and the number of children living in poverty over the past 5 years. Food security, especially healthy food for children, is a concern for these communities. Each chapter of The Arc will partner with a local service club to carry out activities.

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 665 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The Arc Announces $1.4 Million Google.org Investment in Tech Toolbox

Washington, DC – The Arc is thrilled to announce that it is a recipient of a $1.4 million grant from Google.org. Made through the Google Impact Challenge: Disabilities, the grant will support an online search, recommendation and coaching platform that will help people with cognitive disabilities find and adopt technology to live fuller lives.

With Google.org’s support, The Arc will expand the features and services around its Tech Toolbox, a place to find, share, rate and review technology for people with intellectual or developmental disabilities (I/DD).  More than 20 million people in the United States have a cognitive disability. The number of apps and assistive technologies available to support this population is growing rapidly, but the outcomes they promise are rarely backed by evidence, and it is difficult to match the right tool to the unique and evolving needs of the individual.

“At Google, we know that good things happen when you help people find the right information. We’re thrilled to support The Arc’s efforts to make it as easy as possible for people with disabilities and their families to find the right technology to meet their needs. In the long run, we see the Tech Toolbox becoming a go-to resource for information about the ways that technology can change the lives of people with intellectual and developmental disabilities by sharing information about solutions that really work,” said Jacquelline Fuller, Director, Google.org.

The Arc will build a web platform that uses profile data and expert reviews to help people with cognitive disabilities and their caregivers easily identify the technologies that are most likely to produce positive outcomes based on evidence from people with similar profiles.

“People with disabilities, their family members, providers, and friends are seeking out technology to help them lead more independent and fulfilling lives.  Even though many of The Arc’s chapters have already started to address this demand, with great success, not enough is known about how this constantly evolving marketplace is meeting their needs, and how information from their experiences can be harnessed to make greater strides in the field.  We are excited to be working with Google, a company synonymous with innovation, to connect our network and individuals to their know-how in the technology space.  It’s going to be an exciting journey as we partner with them to build this capability,” said Peter Berns, CEO of The Arc.

The Arc will use its national service provider network to deliver more than 100,000 targeted and personalized technology recommendations over the next two and a half years. The platform will be open to the public and, at scale, will reach millions of individuals and their families.

In 2014, The Arc started building the Tech Toolbox because of the need for a service that helps people with I/DD access technology.  Through a national partnership with the Comcast Foundation, The Arc was able to launch a beta version of the platform in 2015. Staff from across The Arc’s chapter network came together to design a one-stop-shop, peer- reviewed directory of technology products that are effective for people with I/DD. Through this directory, chapter staff, people with I/DD, and the general public can find, review, and post examples of technology tools that work well for them. The Tech Toolbox currently contains nearly 500 apps and devices.

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 665 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.

 

 

Editor’s Notes

The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Cognitive disability includes intellectual disability, including those caused by congenital conditions such as Down syndrome, autism, and Fetal Alcohol Syndrome as well as age-related conditions such as Dementia. The diagnosis may also include less severe conditions such as Dyslexia, Attention Deficit Disorder, and other learning disabilities.

The Arc’s Heart Breaks for Victims in San Bernardino

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD) and their families, released the following statement on the tragic shooting at the Inland Regional Center in San Bernardino, California:

“Our deepest condolences go out to the families and friends of those who lost their lives in this tragedy, the people suffering injuries, and the families impacted by this senseless act. The Arc’s collective heart is broken.

“The Inland Regional Center is one of thousands of service systems across the country for people with I/DD and their families. It’s a place where people with disabilities, their families, caregivers, and dedicated staff gather to access services, learn how to navigate the service delivery system, and enjoy functions like the holiday party that took place the day before the shooting. It’s not a place you would ever expect such violence.

“Today, and every day after, people with disabilities, parents, siblings, caregivers, and staff will walk into the Inland Regional Center. When will they feel safe again? They will live with this trauma, feel the pain like anyone else, and they must have access to services to support them to overcome it. Far too often in our society, the abilities of people with I/DD are underestimated. Appropriate supports must be available to them to process and heal after this tragedy, otherwise it will be an open wound. We owe all of those touched by this tragedy the dignity of healing,” said Peter Berns, CEO of The Arc.

Read The Arc of California’s statement.

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 665 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.

The Arc Reacts to House Passage of the Two Year Federal Budget Deal

Washington, DC – Following House passage of a bipartisan two year budget deal that raises the debt ceiling, increases discretionary spending that benefits people with disabilities (I/DD), and avoids a cut to Social Security Disability Insurance (SSDI) benefits, The Arc released the following statement:

“We commend the House for passage of the compromise Bipartisan Budget Act to keep the government open, prevent default, provide sequester relief for many programs that help people with disabilities and their families, and avoid the imminent, harmful cut to Social Security Disability Insurance (SSDI) benefits.  With so much at stake, our nation cannot afford more stalling on these critical issues.

“Remedying the uncertainty caused by inaction on federal funding and the impending debt limit crisis is good for all Americans, including people with disabilities.  While recognizing that the bill is a result of numerous compromises to reach agreement, we are deeply disappointed that the solvency of the SSDI program, a lifeline for people with disabilities, is not extended to 2034. However, we encourage the Senate to move forward with this overall package,” said Marty Ford, Senior Executive Officer for Public Policy, The Arc.

 

Who Should Be the Trustee of a Special Needs Trust?

By Rebecca A. Hajosy, J.D., Special Needs Alliance

SNA LOGO trademarkedProviding long- term financial support or supplementation to a loved one with disabilities requires careful planning. One commonly used tool is the special needs trust (SNT), created to protect assets, while maintaining eligibility for means-tested government benefits. A critically important part of the trust process is selection of a trustee, who will make decisions regarding the investments, distributions and all other aspects of managing the trust for the benefit of an individual with disabilities.

Of course, the selected trustee should be honest, dependable and organized, but typically, someone is needed to play more than a purely administrative role. Parents should write a separate “letter of intent” to help guide the trustee in understanding how the SNT should enhance their son’s or daughter’s quality of life. It should describe the beneficiary’s goals, needs, routines, and preferences for current and future support. It should also include advice about interacting with, and advocating for, the individual. It’s usually a good idea to choose someone located nearby to facilitate the trustee’s active involvement.

Family members are often chosen for the trustee role, but before making a selection, the following should be factored in:

  • This is a long-term commitment, and the trustee should be willing and able to serve for years to come. If an older relative is being considered, it would be wise to also appoint a younger “successor” trustee so that the trust can be administered without interruption.
  • Government entitlement programs, such as Supplemental Security Income (SSI), Medicaid and HUD Housing, have detailed requirements regarding SNT distributions. The trustee must be familiar with the rules pertaining to the programs in which the beneficiary participates. A wrong move can disqualify them for benefits, result in overpayments or even expose the trustee to legal liability. In order to advocate for the benefits to which the beneficiary is entitled, the trustee must be knowledgeable concerning a wide range of often-changing laws and regulations.
  • The trustee has a fiduciary responsibility to manage the trust’s assets in the best interests of beneficiaries. The trustee should either have investing experience or hire someone who does, since improper handling could, again, lead to legal liability.
  • In some situations, having a family member serve as trustee could change─ and even damage –the individual’s relationship with the beneficiary.
  • Even when a family member serves as trustee, it’s common for them to be paid a fee, given the amount of work involved. Family members usually charge less, though, than corporate trustees, banks, accountants and lawyers.

Due to the complexity of administering an SNT, family members may prefer to act as co-trustees, alongside professionals. While appointing co-trustees has advantages, in most cases, they must agree on all actions to be undertaken, including the signing of checks. This can become burdensome, and even result in gridlock. If a family member acts as sole trustee, they may choose to regularly consult a special needs attorney or financial advisor to supplement their own skills.

Another way to involve family members is to name one or more of them as “trust protector.” In that capacity, while not managing the trust, they can require accountings and investigate actions. They also usually have the authority to remove and appoint trustees.

There’s a lot to consider when managing an SNT, and the degree to which it contributes to an individual’s well-being rests largely with the trustee. Choose carefully.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

SSDI: Sustaining Our Lifeline for Decades to Come!

As The Arc celebrates Social Security’s 80th anniversary this August, we kick off the month by marking the 59th anniversary of Social Security Disability Insurance (SSDI). Signed into law on August 1, 1956 by President Dwight D. Eisenhower, SSDI insures nearly all American workers and their families in the event of life-changing disabilities. Without SSDI, many families with members with significant disabilities – including people with intellectual and developmental disabilities (I/DD) – would face financial dire straits and often unthinkable choices.

Our Social Security system has withstood the test of time. But this bedrock of our nation’s economy requires periodic maintenance to remain strong.

Today, our SSDI lifeline stands at great risk. Here are three facts that people with I/DD, their families, and friends need to know about SSDI and the action that Congress must take:

  1. Congress must act by the end of 2016 to prevent a 20% across-the-board cut in SSDI benefits.

Congress from time to time needs to adjust Social Security’s finances to account for population and economic shifts. The need to replenish the Social Security’s Disability Insurance (DI) fund in 2016 to account for long-term trends, such as an older workforce now in its disability-prone years, has been expected for several decades. Without Congressional action, at the end of 2016 the DI fund’s reserves will be depleted, leaving only incoming payroll contributions to pay for benefits. As a result, unless Congress acts, SSDI beneficiaries will face benefit cuts of 20% at the end of 2016.

  1. Two ready, sensible solutions can prevent SSDI benefit cuts: merging Social Security’s trust funds, or ‘reallocation”.

Over the last 5 decades, Congress has repeatedly, on a bipartisan basis, used a simple, commonsense solution to address shortfalls in either of Social Security’s two funds (the Old-Age and Survivors Insurance or OASI fund, and the DI fund). A temporary shift to direct more Social Security revenues to the DI fund – called “reallocation” — will extend the solvency of the DI fund for almost two decades, through 2034. Congress has made similar shifts 11 times in the past, about equally increasing the percentage going into one fund or the other. Reallocation does not require any new taxes. Additionally, the solvency of the overall Social Security system stays the same, with the combined funds remaining fully solvent through 2034.

Another approach – proposed in the One Social Security Act (H.R. 3150) – would merge Social Security’s OASI and DI funds into a single Social Security Trust Fund. This would align Social Security’s finances with the program’s reality: an integrated system of retirement, life, and disability insurance paid for by a single payroll tax. It will eliminate needless crisis points, such as the pending 2016 depletion of the DI fund. And it will better enable Congress to consider the system as a whole to develop responsible ways to strengthen benefits and finances over the long-term, to ensure that Social Security will be there for generations to come.

  1. Congress can secure SSDI’s finances while rejecting harmful approaches.

Unsurprisingly, Americans overwhelmingly support preserving and strengthening Social Security, and oppose benefit cuts. Fortunately, Congress can secure SSDI’s finances while rejecting approaches that would harm people with disabilities and their families.

  • Congress needs to reaffirm the Security in Social Security, and reject short term solutions to the shortfall. Artificial crisis points, such as the one currently faced by the DI fund, cause great alarm for beneficiaries and their families who are forced to live for years with the fear of major cuts to benefits that often mean the difference between financial security and extreme hardship. Short-term patches to the DI fund would force SSDI beneficiaries and their families to live in a perpetual state of fear and uncertainty.
  • Congress should reject any proposals that cut eligibility, benefits, or coverage. SSDI benefits average only about $40 per day, making up the majority of income for most beneficiaries and the only source of income for one in three beneficiaries. It’s hard to imagine how anyone could get by if these extremely modest benefits were cut.

As the end of 2016 grows near, Congress must hear from people with I/DD, their families, and friends that we want Congress to sustain our SSDI lifeline for decades to come.

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