Deadline Looming to File Discrimination Claims

The Arc would like to alert you to an important deadline if you have experienced discrimination based on your disability by the Greyhound bus company.  Below is the information from the U.S. Department of Justice.

“November 10, 2016, is the deadline for individuals with disabilities who experienced discrimination while they traveled or attempted travel on Greyhound Lines, Inc., to submit claims for compensation from Greyhound. This claims process was established in settlement of a lawsuit that the Department of Justice filed against Greyhound earlier this year. Pursuant to that settlement, Greyhound has hired a Claims Administrator to distribute an uncapped amount of compensation to people who:

  • have a disability;
  • traveled or attempted to travel on Greyhound between February 8, 2013, and February 8, 2016;
  • experienced a disability-related incident during the travel or attempted travel (for example, lack of accessible transportation or transportation-related services, Greyhound’s failure to make disability-related accommodations, etc.); and
  • submit a Claim Form by mail, email, or online to the Claims Administrator by no later than November 10, 2016.

Help is available from the Claims Administrator for those who are unable to complete the Claim Form due to a disability. Instructions regarding the claims process are available at the Claims Administrator’s website, The Claims Administrator can also be reached by email at, toll-free at 1-844-502-5953 or 1-800-659-2656 (TTY), or by mail at U.S. v. Greyhound Claims Administrator, c/o Class Action Administration LLC, PO Box 6878, Broomfield, CO 80021.

For more information or for a copy of the consent decree, please visit our ADA website at Those interested in finding out more about the ADA may also call the Justice Department’s toll-free ADA Information Line at 800-514-0301 or 800-514-0383 (TDD).”

What is Disability? The Department of Justice Releases Revised Regulations to Implement the Requirements of the ADA Amendments Act of 2008

On August 10, 2016, the Department of Justice (DOJ) released the much anticipated final rule revising the Department’s Americans with Disabilities Act (ADA) Title II (public services) and Title III (public accommodation) regulations to implement the requirements of the ADA Amendments Act of 20009 (ADAAA). The final rule will take effect on October 11, 2016.

The new DOJ regulations provide significant clarification for who is covered under the ADA. The final rule clarifies that those with disabilities from cancer, attention deficit hyperactivity disorder, learning disabilities, and other conditions should be protected under the ADA.

In addition to clarifying the term disability, the final rule provides a non-exhaustive list in defining major life activities, and adds rules of construction to be applied when determining whether an impairment substantially limits a major life activity.  DOJ states that the goal is to ensure the ADA is construed broadly in favor of expansive coverage, thereby meeting the original Congressional intent.

Although the ADAA is already in effect and applies to all entities covered under Title II and Title III (employment) of the ADA, DOJ’s changes to the regulations will assist in the interpretation and application of the ADAAA. The ADAAA’s provisions regarding the definition of disability will also apply to Title I of the ADA.

The final rule includes clear language that individuals with intellectual disabilities are covered under the ADA and the ADAAA. The analysis in the rule makes it clear the intent of Congress was to protect individuals with I/DD even where a mitigating measure, medication, etc., might lessen the impact of an individual’s disability.

A National Call to Action on Toxic Environmental Chemicals

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions.  Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack.  It’s time to change how we do business in prevention.  We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement.  For more information about Project TENDR, see

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now.  Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.

Everyone’s Right to Reach your Unimaginable Heights

By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States, and oldest of four.

There is a saying that goes, “the two greatest gifts that a parent can give a child are roots and wings.” These are gifts that I have been lucky enough to receive, along with my siblings, including my brother Chris who has autism. My brother Chris is nonverbal, and it wasn’t until he was in his late teens that we appreciated his true intellectual capacity. Before that he was “locked away,” his words, “by autism.” My parents, even before we knew Chris’ true level of intelligence, presumed his competence and pushed his teachers, therapists and service providers to think beyond his disability.  It is with that perspective that I read the recent New York Times Magazine Article “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?”

The article highlights the incidents of parents of children with severe physical and cognitive disabilities unnaturally stunting the growth of their children, in order to make it easier to care for them at home throughout their lifetime. This decision, I can imagine, is not come to without a great deal of deliberation and trepidation. However, it should not be the parent’s choice to make. The Arc’s Health Position Statement is clear:

“Treatments for persons with I/DD that are proposed primarily for the convenience of the caregiver (such as medical procedures that interfere with typical growth and development) must be denied.”

The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of that child with a disability.

The parents are also making the decision based on information that they have received from doctors about their child’s developmental age and potential. This is science that is imperfect at best. As noted in the article, there is “a significant body of research shows that the intellects of people with severe motor impairments can be grossly underestimated.”

With this incomplete information decisions are made, despite the reality that many individuals, including my brother’s, intellectual capacities are not known or can evolve over their lifetimes, especially when they find a means to communicate. This is proven true with the child who is featured in the story. Ricky has “shown signs of purposeful movement, an important developmental milestone, by using a head-motion-activated assistive-communication device to stop and start videos at his school for the visually impaired.” This development is, I am sure, treasured by the family, but it also shows that Ricky’s right to self determination was eliminated by the decision to stunt his growth. As is clearly stated in The Arc’s Rights Position Statement regarding self determination:

“People with intellectual and/or developmental disabilities have the same right to self-determina­tion as all people. They must have opportunities and experiences that enable them to exert con­trol in their lives and to advocate on their own behalf.”

The ability to assert control in their lives was violated by the decision to stunt their growth, and the rights of these children were breached. There is a dignity of risk for all of us, including individuals with intellectual and/or developmental disabilities. That includes the right to grow, make mistakes, and to thrive. Perhaps what these families should be advocating for is not the ability to stop their child’s growth, but, what should be advocated for is better technology to help the children communicate their wants and needs, as well as technology and better supports that will make it easier for their children, as they grow into adults, to stay at home. That growth will come from roots, planted in the belief that every person has a right to reach their full physical stature and their full potential. All of us grow in ways we couldn’t have imagined as children, and all people with disabilities must be afforded the right to achieve those “unimaginable” heights.


“Vote as if your life depends on it,” Justin Dart, Jr., the disability rights pioneer often known as the father of the Americans with Disabilities Act, implored us, “Because it does.”

Our core values call us to focus on voting during Developmental Disabilities Awareness Month in this critical election year.  The Arc’s core value of community underscores that “people with intellectual and developmental disabilities . . . have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society.” Our core value of self-determination provides, “People with intellectual and developmental disabilities, with appropriate resources and supports, can make decisions about their own lives and must be heard on issues that affect their well-being.”

Voting is the most fundamental civil right.  By exercising the right to vote, people have a say in how our democracy moves forward.  As we advocate together for the full inclusion of people with disabilities in our communities, people with disabilities must have an equal say in how our society operates.  Through voting, people with intellectual and developmental disabilities (I/DD) exercise that voice equally with all members of their communities.

By advocating on the issues they care about and supporting candidates who will fight for their agendas, people with I/DD exercise their right to self-determination.  The disability community gains power by showing candidates that it will support those who advocate with us.

Unfortunately, some – but not all – states automatically deprive people with disabilities who are under guardianship of the right to vote. In other states, people with I/DD with guardians retain the right to vote unless a court specifically finds the person ineligible to vote. Self-Advocates Becoming Empowered (SABE) provides guidance on knowing your right to vote if you have a guardian: Voting is a core civil right, and people with disabilities should not automatically lose that right if they are under guardianship.  We must fight to change these laws.

The implications of guardianship are far reaching.  It has long been The Arc’s position that most people with I/DD can manage their own affairs with assistance and guidance from others, and that if guardianship is necessary it should be limited and tailored.  Before considering guardianship, people with I/DD and their families should explore the many less restrictive ways that people with I/DD can receive support to make decisions.  The individual and his or her family should understand all of the implications of limiting the person’s autonomy and transferring his or her rights to a guardian, including the possibility that the person will be deprived of the right to vote. For more information on informal and formal ways to support people with I/DD to make their own decisions, visit The Arc’s Center for Future Planning:

Even if a person has been deprived of the right to vote, he or she can still actively participate during this election season by supporting candidates and advocating on issues.  Let’s make sure the voices of people with I/DD are heard and that the candidates understand our messages.  And, let’s fight to change laws that deprive people with I/DD of their civil rights.

ESEA Rewrite Enacted, Giving States and Districts More Say

By Annie Acosta, Director of Fiscal and Family Support Policy, The Arc

On December 10, President Obama enacted the Every Student Succeeds Act (ESSA).  This law replaces the unpopular No Child Left Behind (NCLB) Act of 2001 that reauthorized the Elementary and Secondary Education Act (ESEA).  NCLB was perhaps most disliked for its unrealistic goals and punitive approaches towards schools that failed to reach them.  This resulted in 45 states seeking flexibility (“waivers”) from the laws various requirements in exchange for state developed plans.  Despite its many problems, however, NCLB did include major advances for student with disabilities, and preserving them was The Arc’s top priority in the legislative process.

NCLB reinforced that students with disabilities are general education students first and should be held to the same high expectations as all other students.  To do so, the law required, among other things, that students with disabilities participate in state and district-wide assessments and to have their progress measured and reported. This increased accountability for students with disabilities has resulted in dramatic increases in graduation rates, from 48% in 2001 to 64% in 2013.

What Does The Arc Think About the ESSA?

This new law is very important to us since it governs the general education classroom where most students with disabilities spend most of their instructional time.  While The Arc had advocated for a stronger federal role in the accountability system, we ultimately lent the bill our support as we believe it is stronger than NCLB and the waivers that are in effect today.

ESSA includes our main priority that students with disabilities continue to be included in state accountability systems and have access to the general education curriculum and challenging academic content standards.  Fortunately, it also added a number of key provisions for students with disabilities, such as limiting the number of students who take alternate assessments, requiring that parents be informed of potential consequences of taking such exams, intervening in schools were students with disabilities consistently underperform, and requiring states to explain how they will improve conditions for learning, such as reducing bullying and aversive behavioral interventions.

What Next?

Federal and state regulations will be developed to implement the new law.  It is critical that the I/DD community participate actively throughout this process.  The Arc’s chapter network can be instrumental in ensuring that states act in the best interests of students with I/DD.  The bottom line is there is much work ahead – we must be at the table discussing critical questions such as the design of tests, the number of tests, and what their academic standards ought to be.  By working together, we can help to fulfill the law’s purpose to “provide all children significant opportunity to receive fair, equitable, and high quality education and to close achievement gaps.”


by: Theresa M. Varnet M.S.W., J.D. (Spain, Spain & Varnet, P.C., Chicago, IL and Fletcher Tilton, P.C., Worcester, MA)

On December 15, 2014, Congress passed the Disabled Military Child Protection Act which allows military families to protect their Survivor Benefit Plans (SBP) by allowing the benefits to be directed to a qualified special needs trust. If there are any funds left in the trust when the disabled beneficiary dies, the funds are paid back to Medicaid for the cost of Medicaid funded services provided to the individual over his/her lifetime.

The Military allows military members who have children with disabilities to participate in the SBP. SBP permits monthly benefit stipends of up to 55% of the military member’s pension to be paid for the benefit of a disabled adult child. Prior to the passage of this Act, benefits had to be paid directly to the adult child. The Disabled Military Child Protection Act will allow the survivor benefit to be paid directly to a “payback special needs trust” for the benefit of a child with a disability. If the benefits are distributed directly to the trust, the beneficiary will remain eligible for needs-based benefits such as SSI and Medicaid.

Beneficiaries of a parent’s SBP can now retain eligibility for Medicaid by assigning the military pension to the qualified special needs trust. A qualified special needs trust is sometimes called a ‘payback’ trust, first party trust, self-settled trust, d4(a), d4(c) trust, or an OBRA’93 trust. It is not the typical 3rd party special needs trust that parents provide in their wills and living trusts. By assigning benefits to a qualified special needs trust, these individuals will now be able to remain eligible for Medicaid which is the primary payer of long term supports and services available to persons with disabilities. Up until now, individuals who received SBP were often locked out of Medicaid funded support programs because their income was deemed too high. If the pension benefits caused him to be over income for Medicaid but did not provide sufficient income for private care, the beneficiary of a SBP was often in a worse off position because of the receipt of this pension. S/he had too much income to qualify for Medicaid but not enough income to meet one’s medical and personal care needs.

It is anticipated that military regulations will be written by the end of this year or by early 2016. Early indications are that the designation to a trust can be made by the military member anytime during his lifetime, but also assignable by the benefit recipient if or when the benefit is being received. Retirees cannot make the assignment now, but hopefully will be able to do so by early next year. We were initially told that there was going to be a narrow window of opportunity to change the beneficiary designation from the disabled child to a trust. We are now told that there will not be a restriction as to when the designation to a trust can be made. Of course, until the regulations are written, we will not know for certain what will be allowed. If you know anyone who may be receiving SBP benefits or could be eligible in the future, it is important to get this information out to them so they are ready to make the change in beneficiary as soon as possible. It is important to meet with an attorney knowledgeable in drafting a ‘payback’ trust. It is critical that the correct type of trust be designated as a beneficiary. If a typical 3rd party special needs trust is used that does not contain the restrictive language required in a payback trust, the assignment will not qualify the beneficiary of the trust for Medicaid and SSI. Parents can find the name of an attorney familiar with drafting qualified payback special needs trusts through the websites for the Academy for Special Needs Planners (ASNP) or the Special Needs Alliance (SNA). ASNP AND SNA are two professional organizations for attorneys who concentrate in this very unique and dynamic area of law.

October is National Disability Employment Month

Nicole Jorwic, J.D. – Director of Rights Policy for The Arc

October is National Disability Employment Awareness Month, a time to reflect on the advancements in making employment for individuals with disabilities a reality, and also, on how much work is left to be done. As the Employment First movement has been sweeping across the country, it is important to remember why a job is so important to an individual with a disability. My brother is 26 and has autism, I asked him why getting a job is important to him, this was his response:

“I think that a job is essential to a person with a disability because it gives us purpose, and common ground to build on with the rest of the world. All my siblings get so much of their identities from their jobs, I should have the same chance. All my brothers and sisters in disability deserve the opportunities to work in our communities, for fair pay, so that we can fulfill our destinies.”

As we work in Washington DC and on the state-level to ensure that policies and practices converge to make the road to employment smoother for individuals with disabilities, we must remember that a job is an essential part of what gives someone standing in their community. Individuals with disabilities are succeeding in meaningful careers in a wide range of private businesses, government agencies and nonprofit organizations, while others are becoming entrepreneurs with their own micro-businesses.

We moved from a time when the thought of individuals with disabilities having a job was a dream, through a time when the only options were sheltered workshops, into a new era where there is meaningful and competitive work for individuals with disabilities. The value in having a response to “what do you do?” is immeasurable for individuals with disabilities across the country, including my brother Chris.

The Arc Reacts to Announcement of No Social Security Increase for 2016

Yesterday, the Social Security Administration announced that inflation as calculated under the Social Security Act did not increase last year, and that as a result, monthly Social Security and Supplemental Security Income benefits will not increase in 2016.

“Nearly 65 million Americans, including over 14 million people with disabilities and their families, will see no cost-of-living adjustment in their Social Security and Supplemental Security Income benefits in 2016,” said Marty Ford, Senior Executive Officer, Public Policy.

“While the official measure of inflation did not change in 2015, at The Arc we know that many beneficiaries, including people with intellectual and developmental disabilities, are struggling to make ends meet. Their Social Security and Supplemental Security Income benefits won’t increase in 2016, but their rent, out-of-pocket medical expenses, and other daily living costs may.

“What’s hard to imagine is that some in Congress think that no cost-of-living adjustment is too much, and want to cut our Social Security lifeline. Shockingly, there’s still talk in Congress of adopting an even lower inflation formula in the Social Security Act, so there would be smaller, and fewer, annual benefit increases. And some in Congress are holding hostage 11 million Social Security Disability Insurance beneficiaries who will face a 20 percent benefit cut at the end of 2016 if Congress fails to act. The Arc calls on Congress to strengthen our Social Security and Supplemental Security Income systems, and to reject any cuts to this lifeline for people with intellectual and developmental disabilities,” said Ford. 

Happy 80th Birthday Social Security!

This week, The Arc celebrates the 80th anniversary of our nation’s Social Security system.

Signed into law by President Franklin Delano Roosevelt on August 14, 1935, Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities – when a worker retires, dies, or acquires a significant, qualifying disability. It helps people with disabilities who work to enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the health care they need.

Social Security insures nearly all Americans, or an estimated 165 million workers. Its protections are hard to come by anywhere else: roughly 7 in 10 civilian workers have no long-term disability insurance, half have no private pension, and one in three has no savings set aside for retirement.

It’s hard to imagine what life would be like without Social Security. Benefits average just over $40 per day, but lift about 22 million Americans out of poverty. For most beneficiaries, that $40 per day is most or all of what they have to get by. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

Social Security has never missed a payment since 1935. Workers pay for Social Security, and count on it being there when they and their families need it. The Arc knows how important it is to sustain Social Security’s record of success, and keep our nation’s promise to today’s workers and beneficiaries, and for generations to come.

Over the last year, The Arc has been on the front lines, defending our Social Security lifeline against shocking attacks and speaking out against harmful benefit cuts. We’re fighting to prevent a devastating 20% across-the-board cut in Social Security disability benefits at the end of 2016. And we offer many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital system is there for people with I/DD and their families!