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Vote!

/in , /by The Arc

“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 (IDD) 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 IDD 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 IDD 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: https://www.sabeusa.org/voting-and-guardianship/. 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 IDD 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 IDD and their families should explore the many less restrictive ways that people with IDD 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 IDD to make their own decisions, visit The Arc’s Center for Future Planning: https://futureplanning.thearc.org/pages/learn/where-to-start/supporting-daily-and-major-life-decisions.

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 IDD are heard and that the candidates understand our messages. And, let’s fight to change laws that deprive people with IDD of their civil rights.

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ESEA Rewrite Enacted, Giving States and Districts More Say

/in /by The Arc

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 IDD 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 IDD. 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.”

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Congress Passed Legislation That Will Enable Military Members to Name Special Needs Trusts as Beneficiaries of Survivor Benefit Plan; Retiree Action Possible Soon

/in /by The Arc

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.

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October Is National Disability Employment Month

/in , /by The Arc

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.

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

/in /by The Arc

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.

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Happy 80th Birthday, Social Security!

/in /by The Arc

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 IDD and their families!

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Happy Birthday to Two Essential Lifelines!

/in /by The Arc

Millions of Americans with disabilities appreciate the vital contributions of the Medicaid and Medicare programs. They provide access to health care and vital home and community based supports (HCBS). Needless to say, they are essential lifelines for people with disabilities.

As we mark the 50th Anniversary of these important programs we have much to celebrate. Did you know that today for the first time in its history, home and community-based services (HCBS) accounts for a majority of Medicaid long-term services and supports (LTSS) spending? This anniversary gives us the opportunity to celebrate the fact that millions of Americans with disabilities have access health care thanks to Medicare and Medicaid. That’s right, MILLIONS of people. Approximately 9 million low-income seniors and younger people with disabilities are covered by both Medicare and Medicaid, including. These dually eligible beneficiaries have complex and often costly health care needs and rely heavily on these program. The harsh reality is without these lifeline programs, their medical needs would not be met – that alone is a cause to celebrate these essential programs.

For people with intellectual and/or developmental disabilities (IDD) Medicaid and Medicare are especially critical. Nationwide, state and federal Medicaid together provides over 77.7 percent of the funding for supports and services for people with IDD. This effective and cost efficient program is essential for people with IDD, enabling them to live and work in the community.

Medicaid has evolved over the years just as the needs of people with IDD. We urge Congress and the states to ensure that it can meet the future health and LTSS needs of people with IDD and other disabilities. Please join The Arc in wishing Medicare and Medicaid a Happy Birthday – cheers to another 50 years of essential supports for people with IDD across the nation!

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The Arc Celebrates the ADA’s 25th Anniversary

/in /by The Arc

On July 26, we will celebrate the 25th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

The Arc played a leadership role in the passage of the ADA. Our volunteer leadership, state chapters, local chapters, and public policy staff worked closely with others in the disability community to make the ADA a reality. The bottom line is that the passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates, like you! As we celebrate this monumental achievement and the 25 years of implementation of this law, we can’t help but reflect on what the ADA really means to individuals with intellectual and developmental disabilities and their loves ones.

To commemorate this special anniversary, we asked members of The Arc’s National Staff to share with us what the ADA means to them. You can read a few of the responses below.

We invite you to visit our social media channels, on Facebook (The Arc US) and Twitter (@TheArcUS) and share with us what the ADA means to you. We want you to be part of the larger conversation so be sure to use the hashtag #ADA25.

“I have been a participant in so many meaningful opportunities. I attended two very highly respected universities; I have travelled extensively, from Kauai to Istanbul to Moscow. And I interned and worked for a prestigious corporation on Wall Street. Each of these experiences has been the product of public policy, for I am an individual with a physical disability. It was through the National Business and Disability Council (NBDC) that I secured a summer internship in New York City. In light of these life events, is it any surprise that I am totally convinced of the power of ADA to transform lives?” – Taylor Woodard, Paul Marchand Intern, The Arc

“I have the ADA to thank for bringing me to The Arc, and introducing me to what has become a life-long commitment to advocating with and for people with disabilities. About 20 years ago, I was hired to direct an ADA project that created materials for criminal justice professionals about accommodations people with intellectual and developmental disabilities need in order to receive fair treatment in the system. This seed money from the Department of Justice eventually led to the creation of a national center in 2013 (see https://www.thearc.org/NCCJD). It’s frightening to think how the lives of people with disabilities would be different today without the passage of the ADA. It’s equally exciting to dream about what the next 25 years may hold!” – Leigh Ann Davis, Program Manager, The Arc’s National Center on Criminal Justice and Disability

“I’ve had the honor of supporting individuals with disabilities and their families since 1978. Back then professionals were taught that we knew best. The idea that a professional would ask a parent, let alone a person with a disability, what they wanted out of life was unheard of. Once the ADA was enacted many professionals were slow to support the paradigm shift from institutionalization to specialized services to full community membership. I’m grateful that my world opened. I count myself as a supporter, listener, and friend. I’m a follower and not a leader. I join in celebrating the fact that more and more people with intellectual disabilities are living full lives in their communities. However, we still have a very long way to go since so many remain ignored and unfilled. So as we celebrate, let’s not forget the 1980 battle cry from Senator Ted Kennedy, ‘For all those whose cares have been our concerns, the work goes on, the cause endures, the hope still lives and the dream shall never die.’” – Karen Wolf-Branigin, Senior Executive Officer, National Initiatives, The Arc

“Having two siblings with IDD and working as a disability rights attorney, I see the profound value of the ADA in both my personal and professional life. While there is still so much more work that needs to be done to make our systems work better for people with disabilities, much of the progress we have achieved and continue to work towards every day at The Arc and throughout the disability advocacy community would simply not be possible without the vital protections and enforcement mechanisms the ADA provides. I am eager to see what we will achieve over the next 25 years as we continue to use the ADA as a fundamental tool to protect and enforce the civil rights of individuals with disabilities!”- Shira T. Wakschlag, Staff Attorney, The Arc

“The ADA certainly transforms lives, as I can attest to. It has helped me to reach my goals and enabled me to be a trailblazer and set the way for individuals with autism and other developmental or intellectual disabilities. I have had numerous opportunities, one being able to participate in my DD council’s Partners in Policy Making program where I learned how to be a self-advocate and stand up for myself and others. It has also helped me to be employed at one of the most wonderful places to work, The Arc of the U.S.” – Amy Goodman, Director Autism Now, The Arc

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SSDI: Time for Action

/in /by The Arc

A lifeline of financial security for millions of Americans with disabilities, Social Security Disability Insurance (SSDI), is currently under attack. Congress must adjust SSDI’s finances by the end of 2016 to prevent a devastating one-fifth across-the-board cut in benefits. Writing in the Journal of Health and Social Work, The Arc’s T.J. Sutcliffe makes the case for how social workers and other professionals in the field can and should support necessary action to strengthen and preserve this vital support for people with disabilities and their families.

Sign up for The Arc’s Capitol Insider weekly updates and periodic Action Alerts to stay informed on the latest developments and take action to support the SSDI lifeline.

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The Arc on New Study That Highlights Housing Crisis for People With Disabilities on SSI

/in /by The Arc

This week, the Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force released a study, Priced Out in 2014. This publication is released every two years. The 2014 results show that the national average rent for a modestly priced one-bedroom apartment is greater than the entire average Supplemental Security Income (SSI) benefit for a person with a disability.

Priced Out in 2014 highlights an ongoing barrier to community living for people with disabilities – the lack of accessible, affordable housing. People with disabilities deserve the opportunity to live independently in the community, though as highlighted by Priced Out in 2014, many who rely on SSI face severe obstacles to that opportunity. While progress has been made over the last several years with a new, integrated housing model under the Department of Housing and Urban Development’s Section 811 program, our nation still has a long way to go. Having a place to call home is a basic human right. The Arc is advocating for Congress to adequately fund the Section 811 project rental assistance program to help address the housing crisis for people with disabilities.

SSI provides basic income to people with significant and long-term disabilities who have extremely low incomes and savings. According to Priced Out in 2014:

  • In 2014, the average annual income of a single, non-institutionalized adult with a disability receiving SSI was $8,995, about 23% below the federal poverty level for the year.
  • As a national average, a person receiving SSI needed to pay 104% of his or her monthly income in order to rent a modest one-bedroom unit. In four states and the District of Columbia, every single housing market area in the state had one-bedroom rents that exceeded 100% of SSI.
  • In 162 housing market areas across 33 states, one-bedroom rents exceeded 100% of monthly SSI. Rents for modest rental units in 15 of these areas exceeded 150% of SSI.
  • People with disabilities receiving SSI were also priced out of smaller studio/efficiency rental units, which on a national basis cost 90% of SSI. In eight states and in the District of Columbia, the average rent for a studio/efficiency unit exceeded 100% of the income of an SSI recipient.

The full results of the study can be viewed on the TAC website.

The Department of Housing and Urban Development (HUD) Section 811 Project Rental Assistance (PRA) program is an innovative new model that allows states to effectively target rental assistance to enable people with significant disabilities to live in the community. Section 811 is the only HUD program dedicated to creating inclusive housing for extremely low-income people with severe disabilities, including SSI recipients.