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.

Sign up for The Arc’s Action Alerts and Capitol Insider newsletter to stay up to date and take action. Your voice can make a difference!

Social Security – One Social Security Act Introduced

Last week, Representative Xavier Becerra (D-CA) and 22 original cosponsors introduced the One Social Security Act (H.R. 3150). The bill would avert a 19% across-the-board cut to Social Security Disability Insurance (SSDI) benefits at the end of 2016 by merging the Social Security Old-Age and Survivors Insurance (OASI) and Disability Insurance (DI) Trust Funds into a single Trust Fund. This new financial structure would better reflect Social Security’s already unified nature: a single payroll tax currently pays for an interrelated system of Social Security retirement, survivors, and disability benefits, and changes to one part of this system often impact all parts of the system. The Arc supports the One Social Security Act. More information about the bill is available online.

The Arc Urges Congress to Protect our Social Security Lifeline

Washington, DC – The Arc released the following statement from Marty Ford, Senior Executive Officer, Public Policy, in response to several important developments in Washington affecting Social Security, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI):

“The Arc applauds the Senate, which yesterday listened to the voices of people with disabilities and seniors, and removed a harmful proposal from legislation to reauthorize our nation’s highways, bridges, and public transportation system. The proposal would have partially funded the bill with cuts to Social Security, SSDI, and SSI. Social Security must not become a piggybank to pay for unrelated programs, no matter how important, and beneficiaries cannot afford any cuts to these modest but vital benefits. The Arc will remain vigilant and ready to fight back if any similar proposals arise as Congress continues to debate reauthorization of surface transportation legislation.

“Earlier this week, the Social Security Trustees released their 2015 report on the current and projected financial status of our nation’s Social Security system. The Trustees continue to find that Social Security’s overall health is strong, but that if Congress fails to act before the end of 2016, nearly 11 million Americans who rely on SSDI will face a 20 percent across the board cut in benefits.

“The Arc calls on Congress to act promptly to prevent this catastrophic cut to our SSDI lifeline. A minor, commonsense financial adjustment can ensure that both of Social Security’s Trust Funds will be able to pay full scheduled benefits through 2034, without any cuts to Social Security disability, retirement, or survivors benefits. We applaud legislation introduced yesterday to do precisely that, by paying all Social Security benefits out of a single Social Security Trust Fund: the One Social Security Act of 2015, sponsored by Rep. Xavier Beccera (D-TX) with 22 original cosponsors.

“The Arc urges Congress to ensure that Social Security will be there for all Americans — including people with disabilities and their families — for generations to come, and to reject any cuts to our Social Security lifeline,” said Ford.

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 Applauds Supreme Court Ruling Upholding Subsidies to Purchase Health Insurance under the Affordable Care Act

Washington, DC – In its 6-3 King v. Burwell decision, issued today, the U.S. Supreme Court held that federal tax subsidies are being provided lawfully in those states that have decided not to run the marketplace exchanges for insurance coverage. This is a huge win for the Affordable Care Act (ACA) and people with disabilities throughout the country.

The case was brought by Virginia plaintiffs alleging that the ACA forbids the federal government from providing subsidies in states that do not have their own exchanges. These exchanges allow individuals without insurance to shop for individual health plans. Some states created their own exchanges, but others allowed the federal government to run them. Approximately 85% of individuals using the exchanges qualify for subsidies to help pay for coverage based on their income.

“Today’s Supreme Court ruling upholding the subsidies to purchase health insurance in the federal exchanges is good news for many Americans, including people with intellectual and developmental disabilities. This challenge could have weakened the law overall, threatening all the protections that people with disabilities gained in the landmark law. This ruling should end the effort to dismantle this law, and instead the focus should be entirely on effective implementation,” said Peter Berns, CEO of The Arc.

The ACA is important to people with disabilities. It expanded coverage and reformed insurance to end discrimination against people with disabilities and enhance access to health care. The private health insurance marketplaces allow individuals or small businesses to shop for coverage and potentially receive subsidies to help offset the cost of insurance. The subsidies are key to ensuring affordable coverage. The health insurance reforms, the protections from high premium increases or out-of-pocket costs, and the coverage of “essential health benefits”, including mental health care and rehabilitative/habilitative services and devices, help assure that people with disabilities have affordable health care that meets their needs.

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.

Relias Learning and The Arc Announce New Partnership to Benefit State and Local Chapters Nationwide

Washington, DCRelias Learning, the leader in online training and compliance solutions for the healthcare market, announced today that it is partnering with The Arc, the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families.

Relias Learning will offer Chapters of The Arc specialized rates on its Intellectual and Developmental Disability Training Library, which contains over 200 courses designed to improve competency and performance in community-based support, positive behavior support, autism support, customized employment, health and safety, and more. Relias Learning’s Applied Behavior Analysis (ABA) and Autism Library provides courses approved by the Behavior Analyst Certification Board (BACB) for continuing education needs for Board Certified Behavior Analysts (BCBAs) and to meet training requirements for the RBT certification.

“We are honored to announce our partnership with The Arc,” said Jim Triandiflou, CEO of Relias Learning. “Relias Learning is dedicated to providing tools necessary to build competencies and confidence in the Direct Support Workforce supporting those with intellectual and developmental disabilities. Delivering quality care begins with a skilled and trained workforce. Partnering with The Arc will put training in the hands of more people nationwide and help us to continue developing and delivering the best programs available.”

“Relias Learning has been a longtime friend to The Arc and we are thrilled to be entering into this partnership. This agreement will enable more members of The Arc’s network to utilize all of the high quality materials that Relias Learning has to offer. Continuing education courses, like the ones available, are essential to making sure employees are on the cutting edge of their respective fields. Working together The Arc and Relias Learning will be able to better serve individuals with intellectual and developmental disabilities and improve outcomes for them and their families,” said Peter Berns, CEO of The Arc.

In addition to online training libraries, courses are offered through an individual course-by course purchase option via

Through the new partnership, The Arc member chapters are eligible for exclusive discounts on learning management library subscriptions and Relias Academy courses.

The Arc Applauds Introduction of SSI Restoration Act

Washington, DC – The Arc applauds today’s introduction of the Supplemental Security Income Restoration Act (SSI Restoration Act) by Representative Raul Grijalva (D-AZ), Senator Sherrod Brown (D-OH), Senator Bernie Sanders (D-VT), and Senator Elizabeth Warren (D-MA).

“The SSI Restoration Act will bring welcome relief to the millions of Americans with disabilities and seniors who look to SSI as a lifeline that protects against extreme poverty. Unfortunately, key standards that affect important areas such as how much a SSI beneficiary can save or earn have not changed in decades. The SSI Restoration Act will bring these standards up to date to better reflect the program’s original intent and strengthen SSI for extremely low income people with disabilities and seniors,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.

The SSI Restoration Act would update the SSI resource limits, to $10,000 for an individual or $15,000 for a couple – the amount they would be today if adjusted for inflation since 1989, the last time the resource limits were updated. The bill would also update the general income disregard (to $112 per month) and the earned income disregard (to $364 per month) to the amounts they would be today if adjusted for inflation since 1972, the last time they were updated. Finally, the bill would repeal the in-kind support and maintenance provision and repeal the SSI transfer penalty.

For more information, read the Supplemental Security Income Restoration Act of 2015 Policy Brief and SSI FAQs.

The Arc Launches TalentScout – Guide for Employers on How to Successfully Employ People with Autism

TalentScoutWashington, DC – One in 68 children today are being diagnosed with autism spectrum disorders (ASDs).  The unemployment rate of adults with intellectual and developmental disabilities (I/DD), including ASDs, is 85 percent.  This appalling statistic coupled with the increase in prevalence of kids being diagnosed demands action from all sectors of our economy to ensure that people with ASDs are finding appropriate employment at a fair wage, and retaining that job with the proper supports to be successful and have a career of their choosing, just like people without disabilities.
With nearly 65 years of experience working with and serving people with I/DD, including autism, The Arc is launching an exciting new resource called TalentScout for employers to unlock the talents of people with autism in the workplace.  TalentScout is a first of its kind resource toolkit that gives employers essential insight and tools that harnesses their employees with autism fullest potential and leads to higher levels of productivity in the workplace.

“People with autism have a lot to contribute in all aspects of our society.  In the workplace, their individual unique talents need to be maximized to benefit both the goals of their employer, and their personal desire to have and keep a job that adds meaning to their life.  Far too many people with autism are left on the sidelines of our workforce, and entities that have recognized the benefits of hiring someone with autism are reaping the rewards.  Whether it’s the loyalty that someone with a disability may bring to their employer, or their unique skill set that gets the job done, people with autism are ready for hire,” said Peter Berns, CEO of The Arc.

TalentScout is a valuable resource for government agencies that are working to implement President Obama’s initiative (EO 13548) to hire 100,000 people with disabilities into the federal government workforce, and for federal government contractors who need to bring their companies in compliance with the new 503 regulations on employment of people with disabilities.  These new regulations require federal contractors to conduct targeted outreach to the disability community, establish a 7% workforce utilization goal; implement data collection mechanisms to measure effectiveness of affirmative action, provide invitation to applicants and existing employees to voluntarily self-identify, and to perform an annual evaluation to measure outcomes.

The Arc is providing a unique resource for employers in that TalentScout’s content has been vetted by people with autism, and it includes their first-hand accounts and insights as job applicants and employees. It is backed by the years of nationwide experience of The Arc’s vast chapter network, and by Autism Now: National Autism Resource and Information Center.

“TalentScout is an extremely valuable guide. This sets the bar high for employers,” Jose Velasco, SAP, Head, Autism at Work Program.

“The personal stories and insights took this document to another level,” Kristie King, Comcast/NBC Universal, Manager, Diversity Recruitment.

TalentScout is one component of TheArc@Work, which is leading the way in developing innovative workforce solutions for the government and private sector by connecting employers with talented employees with I/DD and supporting the recruitment, on-boarding, and retention process.

The Arc Celebrates Release of Richard Lapointe on Bond, Urges Prosecutors to Drop Case

Washington, DC – The Arc is thrilled to see the release today of Richard Lapointe, who has been in prison since 1987 for a rape and murder he did not commit. After a lengthy, coercive interview with the police, Lapointe falsely confessed to the crime, which was committed against his then-wife’s grandmother. Since then, his legal team and advocates have been fighting for his case to be reconsidered, because of his intellectual disability.

Last week, the Connecticut state Supreme Court raised concerns about the circumstances of the interrogation and the truthfulness of the alleged confessions, and ordered that he be released or given a new trial. Then this week, prosecutors agreed not to pursue the means to keep him in prison while they decide whether to challenge the state Supreme Court decision.

“This nightmare has gone on far too long for Richard. Finally, the state Supreme Court has recognized how the police treated Richard, and for the first time in more than 27 years, he will step outside of prison a free man. The prosecutors should now take the next and final step to end this and dismiss the charges, once and for all,” said Peter Berns, CEO of The Arc, who attended the oral argument of the case when it was heard by the Connecticut Supreme Court.

The Arc runs the National Center on Criminal Justice and Disability (NCCJD), the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (I/DD) under one roof. NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for criminal justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.

“Far too many Richards are living in prisons, without the level of support Richard had from advocates and his attorneys – and it took more than 27 years for this injustice to be uncovered. How many more Richards are out there? False imprisonment of anyone, including people with I/DD, is an ugly mark on our nation’s conscience. The National Center on Criminal Justice and Disability is working every day to ensure justice for people with intellectual and developmental disabilities,” said Berns.

Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Since 1983, over 60 people with intellectual disabilities have been executed based on false confessions. Robert Perske, respected author, advocate and long-time supporter of The Arc, compiled a list of people with intellectual disabilities who gave false confessions to begin documenting these otherwise hidden-away cases. Lapointe is on Perske’s list.

“It’s been a tough road – all the things Richard had to go through to get to this point are unfathomable. I’m feeling very good about all the troops that have stood by Richard all these years. Richard’s situation needs to teach everyone in the system,” said Perske.

“This is an extraordinary day. Richard never gave up hope and neither did his supporters. The truest form of justice is being served today!” Leslie Simoes, Executive Director, The Arc of Connecticut.