URGENT- 3 Day Medicaid STILL Matters Campaign-Get Your Story on the Record

The Senate is set to vote next week on the Graham-Cassidy bill, this is the most dangerous of the health care proposals that have been before Congress and it is on the fast track. Like previous proposals, this bill includes the per capita caps on the Medicaid program that would end Medicaid as we know it with a trillion dollar cut over two decades, and allows states to weaken consumer insurance protections such as the ban on pre-existing condition exclusion and the essential health benefit requirement.

The latest revisions to the bill INCLUDES the devastating cuts to the Medicaid programs that over 10 million people with disabilities rely on to live and work in their communities. The process that the Senate has been using since January to repeal and replace the Affordable Care Act has been out of regular order, with no committee meetings, public input or hearings. In a pathetic attempt to make an effort, the Senate Finance Committee has scheduled ONE hearing on Monday, September 25, 2017, details are here.

HERE IS WHAT YOU CAN DO:

Because not everyone will be able to attend the hearing to make their voices heard, The Arc of the United States will be collecting your stories to submit on Monday. The time is now to take action and tell your Senators what these devastating cuts will mean to you and your family and why MEDICAID MATTERS. Take a few moments before 9 AM SUNDAY EST to tell your Medicaid story HERE. We will hand deliver all the printed messages to the Senate Finance Committee on Monday, and send them directly to your Senators. So please act NOW, e-mails must be received by 9 AM EST on Sunday to be printed.

We want to show strong support for Medicaid from all over the nation, and get your story on the record. After you submit your story be sure to take action and contact your Senators to tell them to vote no on the Graham-Cassidy bill. If you have any questions please contact Nicole Jorwic at The Arc of United States: jorwic@thearc.org

The Arc Responds to Graham-Cassidy-Heller-Johnson Health Care Proposal

Architects of this bill are still ignoring the pleas of their constituents with disabilities

Today, U.S. Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), Ron Johnson (R-WI) and former US Senator Rick Santorum (R-PA) unveiled the latest attempt to repeal the Affordable Care Act. The Arc released the following statement in response:

“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.

“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased.  The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

Disability in America – Second Article in Series Continues Biased, Flawed Reporting

by T.J. Sutcliffe, Director, Income & Housing Policy

In March, The Washington Post launched a new series, “Disabled, America,” to look at how disability “…is shaping the culture, economy and politics…” of rural communities. The first article in the series met with widespread criticism for multiple errors in its data and facts, and for leaving the public with negative, false impressions about Social Security’s disability programs and rural beneficiaries.

Unfortunately, the second article in the Post’s series only went further down the path of reporting by stereotype and anecdote. The article profiles a family in Pemiscot County, Missouri with several members who have disabilities, including a mother and her adult daughter who receive Social Security disability benefits.

Media Matters summed up the outrage at the article’s portrayal of the family as “…a ‘mean-spirited’ and ‘cartoonish’ illustration of the struggles of those living with poverty in rural America.” In Poynter, S.I. Rosenbaum noted that the article failed to provide even basic facts about Social Security’s disability programs, writing that “…without them, in my opinion, the story is incomplete and even misleading.” The Urban Institute pointed out many of those missing facts.

Notably, the second article failed to provide important context, such as the fact that Missouri has a relatively high statewide rate of residents with disabilities, particularly in many rural Missouri counties. In addition, record numbers of Americans today live in multigenerational households, and disability often runs in families for reasons that include genetics, common exposure to environmental hazards, and similar past and ongoing access to (or lack of) health care.

With President Trump having recently proposed over $72 billion in cuts over 10 years to Social Security and Supplemental Security Income disability benefits, reporting that focuses on anecdote, with little to no context, runs the risk of leading policymakers down a dangerous and harmful path. In letters responding the Post’s first article and second article, over 50 national organizations urged Congress to “…ensure that any discussions about how to strengthen the nation’s Social Security system are informed by facts—not well-debunked myths and offensive stereotypes.”

Here’s a round-up of analyses and responses to the second Post article – and if you missed it, be sure to read our round-up of responses to the first Post article, as well.

It’s Budget Season in Washington – So Far These are the 5 Worst Things for People with Disabilities

By Annie Acosta, Director of Fiscal and Family Support Policy

The President’s proposed Fiscal Year 2018 budget released last month would make unprecedented cuts to public education, health, transportation, housing, and countless other effective federal programs. These massive cuts would affect most Americans in one form or another, and would be particularly devastating to people with disabilities and their families. The budget is titled “The New Foundation for American Greatness” – but the reality couldn’t be more different. Here are five reasons the President’s proposed budget is anything but great for people with disabilities.

  1. More Cuts to Medicaid
    Under the President’s proposed budget, Medicaid, the primary health insurance and long term services and supports program for people with disabilities, would lose $610 billion over 10 years (on top of the over $830 billion in cuts in the American Health Care Act passed by the House of Representatives in March). The combined cuts roughly halve the program’s federal budget by 2027. Medicaid’s “optional” services, expected to take the brunt of such a drastic cut, include prescription drugs, physical therapy, and all home and community based services under state plan and “waiver” programs. Medicaid, including home and community based services, makes it possible for millions of people with disabilities to survive and to live and work in the community.
     
  2. Breaks the Promise on Social Security
    Despite President Trump’s promises to not cut Social Security, the budget also calls for over $72 billion in cuts to Social Security’s disability programs over the next 10 years, including cuts to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Social Security and SSI benefits are modest, but absolutely essential for people with disabilities to put a roof over their head, food on the table, and to pay for their out-of-pocket medical expenses and disability related costs.
     
  3. Slashes Community Living Supports
    President Trump’s proposed budget would sharply reduce – or even eliminate – a wide variety of effective federal programs that help to make a life in the community possible for millions of people with disabilities. These include:

    • Supplemental Nutrition Assistance Program (SNAP), which provides essential nutrition assistance for millions of people with disabilities, would face a 29 percent cut over 10 years. By 2027, over 5 million households that include a person with a disability could lose their SNAP benefit under this cut.
    • Affordable housing programs at the Department of Housing and Urban Development would face a nearly 15 percent cut in 2018. The President’s budget targets the Section 811 Supportive Housing for Persons with Disabilities program for a proposed $25 million cut in 2018. This would leave the Section 811 program with insufficient funds to renew all existing project-based rental assistance contracts thereby placing current lease compliant tenants in 811 properties at imminent risk of homelessness.
    • Councils on Developmental Disabilities, independent living services, and traumatic brain injury services would see their funding to states eliminated and replaced with a new “innovation” program with less than half of the funding for the three programs.
       
  4. Click here to see a listing of discretionary programs and their proposed percentage cuts.

  5. Inadequate, Unworkable Paid Leave
    The President’s budget proposes a new paid leave program that would provide up to 6 weeks of paid leave for mothers and fathers to care for a newborn or newly adopted child. According to the Associated Press, “states would be required to provide leave payments through existing unemployment insurance programs and would have to identify cuts or tax hikes, as needed, to cover the costs.”The proposal has been widely criticized as both unworkable – creating an unfunded mandate to states that would burden and undermine already-fragile unemployment systemsand inadequate. It leaves out the 75% of people who take leave in the U.S. for family caregiving and medical reasons – including people with disabilities who need leave to address their own health, and people who need leave to care for a family member with a disability or illness. In addition, 6 weeks often simply isn’t enough – particularly if you have a disability, are caring for a family member, or have a newborn in intensive care. In comparison, the Family and Medical Leave Act provides 12 weeks of unpaid leave. Finally, benefits would likely be insufficient: on average, state unemployment insurance programs presently only cover one third of a worker’s wages.
     
  6. Uses Bad Math and Benefits the Most Prosperous
    President Trump’s proposed budget purports to cut $3.6 trillion in spending to balance the budget in 10 years, while also offering more than $5.5 trillion in tax reductions. The outsized tax cuts come primarily from reducing or eliminating taxes that are paid predominantly by wealthy households. These include the estate tax, the alternative minimum tax, and individual income tax on income earned through “pass-through” entities. The end result is that the budget would overwhelmingly benefit profitable corporations and wealthy individuals.In addition, the entire budget is based on bad math that virtually all independent economic analysts have dismissed.

    • It assumes massive amounts of new revenue from a 50% increase in economic growth resulting from tax cuts, renegotiated trade deals, and deregulation.
       
    • It claims there will be no deficit after 10 years as dramatic economic growth will allow the government to collect about $2 trillion more in tax revenue. However, the budget doesn’t include the cost of the proposed tax cuts, therefore relying on its tax cuts to both pay for themselves and add $2 trillion in additional tax revenue.

Next Steps in the House and Senate

Federal budgets are statement of our nation’s values – and it’s clear to The Arc that this budget simply doesn’t reflect what most Americans value. Fortunately, the President’s budget merely conveys the Administration’s priorities and is non-binding. The House and Senate must each develop their own budgets and reconcile any differences to implement their budget plans.

The House is presently developing its budget and may release it after the July 4 recess and the Senate could take the House’s budget shortly afterwards. The House budget may include many of the harmful provisions in the President’s Budget outlined above.

The Arc and numerous organizations representing civil rights, human services, and other communities are deeply committed to preventing the passage of harmful budgets. We’re working together to put a face on these proposed cuts and to urge Congress to reject the President’s proposed budget.

What Do Moms Need?

Last week, The Arc was excited to join nearly 50 national organizations that co-sponsored the #MomsDontNeed / #LasMamásNoNecesitan Tweet storm. On Twitter, we called attention to recent actions and policies that threaten mothers and families, and highlighted the kind of supports they and all people truly need to protect and advance their economic security, health, and more.

Moms with disabilities, and moms of children with disabilities, do so much. And across the nation, moms are working harder than ever. With Congress considering legislation to devastate our health care system, and with new reports of major cuts in the works to Medicaid, Social Security disability benefits, and other effective federal programs, so much is at stake – for moms, and for all of us. As The Arc celebrates Mother’s Day, here are three things that we know are vital to supporting mothers and their many contributions.

1. Access to Health Care and Long-Term Supports and Services. Health insurance under the Affordable Care Act can make all the difference in the world. Just listen to Lindsay, mother of toddler Calvin, if you’re not sure why. In addition, for many people with intellectual and developmental disabilities, Medicaid provides a range of essential medical and long-term supports and services that make community living a reality and for many, can be the difference between life and death. Unfortunately, the American Health Care Act (AHCA) – passed recently by the House of Representatives and now before the Senate – shows callous and dangerous disregard for the wellbeing of people with disabilities and their families. Among the bill’s many harmful provisions, the AHCA would decimate Medicaid, erase health insurance cost protections for people with pre-existing conditions, and cause people to lose essential health benefits under state waivers. The AHCA is one bill that #MomsDontNeed.

2. Economic Security. For most moms and families of children and adults with intellectual and developmental disabilities, every penny counts. For example, raising a child with disabilities can be tremendously expensive due to major out of pocket medical and related costs, like adaptive equipment and therapies. For many families, earnings from work aren’t enough to maintain a basic standard of living and cover these often-extraordinary disability-related costs. It’s only possible because of income from Social Security’s disability programs, including Supplemental Security Income (SSI). Unfortunately, recent news reports suggest that President Trump’s 2018 budget will propose major cuts to Social Security disability benefits, as well as Medicaid and a host of other programs – totaling $800 billion in cuts. That’s another devastating idea that #MomsDontNeed.

3. Paid Family and Medical Leave. Moms with disabilities, and moms of children with disabilities, know better than most that time is a precious resource. At The Arc, we hear often from moms and dads struggling to get enough paid time off work: to be with a new baby in the Neonatal Intensive Care Unit; to care for a new baby with disabilities when they first come home; to take their son or daughter to medical appointments, therapies, and after school programs; to attend IEP meetings and other school appointments – and so much more. And while we all love Wonder Woman, let’s face it, moms get sick, too. Moms shouldn’t have to choose between a pay check and a child’s health, or a pay check and their own health. Not moms, not anyone. That’s why The Arc is joining the call for a robust federal paid family and medical leave program. We hope you’ll #JoinOurFight!

The Passage of the AHCA: The Real Life Consequences for People with Disabilities

By: Julie Ward, Director of Health Policy and Nicole Jorwic, Director of Rights Policy

They say that if you want to know about a person, look at how they spend their money; to know the values of a nation, the same is true. The current Affordable Care Act and Medicaid fight is showing a side of the political system that is disheartening and shameful. The American Health Care Act, passed by the U. S. House of Representatives, lowers taxes on wealthy individuals and corporations and pays for it by taking over $800 billion from the Medicaid program which serves low income children, seniors, people with disabilities, parents, and other adults.

The fundamental injustice of transferring wealth from low income people to businesses and wealthy people is compounded by the fact that these deep cuts in Medicaid will not make private health insurance more affordable or available, the stated goals of supporters of the AHCA. Instead the AHCA dismantles the main source of funding for long term supports and services (LTSS) for seniors and people with disabilities. The demand for these services, such as help to stay in a person’s own home, will grow as the population ages. Instead of addressing the need for an LTSS policy in a positive way, it makes devastating cuts and places a per capita cap on the Medicaid program.

An estimated 24 million people will lose their insurance coverage and millions are at risk of losing the supports and services that help them live in the community. Every one of those numbers represents a person. A person who will no longer be able to feel the peace of mind of health coverage, a person who now will worry that their guarantee to services under Medicaid is irreparably changed, a person whose supports to assist them to work are at risk, and a person who now has to fear that their son or daughter will end up in an institution, when they have fought their whole lives to keep him/her in the community.

Medicaid is the main source of funding for over 77% of the supports and services that individuals with intellectual and/or developmental disabilities (I/DD) use to live in the community and has been able to grow because of the widespread bipartisan support. They have had bipartisan support because disability knows no political, or geographical, ethnic, or socioeconomic boundaries. These supports and services provide dignity to people with I/DD by providing help with meals, bathing and dressing, toileting, in-home skilled nursing, and communication support, to name but a few. These supports are critical to people with disabilities to be able to live their lives in the community. In many cases, they can be the difference between life and death.

We fear that because home and community based services are not mandatory services, they will be cut first. States will return to outdated modes of serving people with disabilities, congregating large numbers of individuals in facilities with inadequate staffing and no real-life opportunities. The per capita cap proposal will pave a path backwards to institutional care and segregated services.

The AHCA has many other troubling provisions and The Arc has developed a summary of how the bill impacts people with disabilities.

As the Senate develops its health care reform proposals, we must be constant reminders that the services and supports to people with disabilities and their families CANNOT be what pays for health care reform and tax cuts. Lives depend on it.

The Arc Responds to House Passage of The American Health Care Act: “Shows callous and dangerous disregard for the wellbeing of people with disabilities”

Washington, DC – The Arc released the following statement following the House of Representatives passage of the American Health Care Act (AHCA), with the addition of amendments that take the bill from bad to worse for people with intellectual and developmental disabilities (I/DD) and their families:

“Members of the House of Representatives who supported the American Health Care Act voted against their constituents with intellectual and developmental disabilities. We won’t soon forget those who so willingly ignored the pleas of their constituents who rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. We must call this what it is – an attack on the rights and lives of people with disabilities.

“The federal government will be walking away from a more than 50 year partnership with states when it comes to Medicaid. Deep cuts and radical restructuring will decimate the Medicaid program. With an over $800 billion cut to Medicaid, states will face difficult choices about what people to cut from the program or what services to roll back. Optional services like home and community based services are likely to be cut. Lives will be lost when people are unable to access the health care and community supports they need.

“The plan that passed the House today is insufficient to keep people with disabilities insured or to support anyone with complex medical needs. If signed into law as currently written, this bill will result in people with disabilities and their family members losing health coverage in the private insurance market and in Medicaid. Coverage also becomes unaffordable as people with pre-existing conditions lose protections against higher premiums.   Those lucky enough to retain their coverage will find that some of the services they need – Essential Health Benefits – are no longer available.  And Medicaid funded long term supports and services, which help people live independently and be included in their communities, will be even scarcer as waiting lists for services will grow all across the country.  Some may end up living in nursing homes and institutions because community services are no longer available.

“The American Health Care Act shows callous and dangerous disregard for the wellbeing of people with disabilities and their families and erases decades of progress.  Now we turn to the Senate, our last line of defense. We intend to work with Senators on both sides of the aisle to oppose this harmful legislation. We continue to encourage disability advocates across the country to reach out to their Senators to voice their concern about this bill,” said Peter Berns, CEO, The Arc.

This week, The Arc released another video illustrating how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

This video is the second in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the ACA and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration.

School Privatization – What is Happening, and Should We be Concerned?

By Annie Acosta, Director of Fiscal and Family Support Policy

Social media is abuzz over a bill that would largely wipe out federal support for our current public elementary and secondary education system and replace it with vouchers for private schools or home schooling. This legislation, the Choices in Education Act of 2017 (H.R. 610), has two cosponsors (neither of whom are in the committee of jurisdiction) and has not advanced since its introduction in January.

Disability advocates might better target their energy for the President’s full Fiscal Year 2018 Budget Request expected in mid-May that is expected to include significant privatization efforts. In March, the President released a “skinny’ budget” that included brief plans to create a $250 million school voucher program and a $1 billion Elementary and Secondary Education Act Title I “portability” proposal. Title I currently provides about $15 billion per year to school districts with high numbers or high percentages of children from low-income families. The President’s portability proposal would allow for these public school dollars to follow students to the public schools of their choice, an option that many reasonably fear is a first step toward privatization. The Administration’s March proposal would ramp up portability to $20 billion over time – about a third of existing federal aid for education.

The bulk of this amount would go to “encouraging districts to adopt a system of student-based budgeting and open enrollment that enables Federal, State, and local funding to follow the student to the public school of his or her choice.” Unlike the current system where Districts create school budgets based largely on how much it costs to pay the salaries of school staff and maintain the facility, the proposed funding model would follow each student, no matter where they enroll. This could leave districts to choose among the following private school choice schemes that are already in existence, even if only on a small scale, across states:

School Vouchers or Scholarships. School district funds are allocated to families in the form a voucher to pay partial or full tuition. Twenty five states have such programs.
Tax Credit Scholarships – Taxpayers (individuals and businesses) receive full or partial tax credits for donating to nonprofits that provide private school scholarships. Twenty one states provide tax credit scholarships.
Education Savings Accounts – Parents receive a deposit of public funds into government-authorized savings accounts (often via debit card). The funds can cover private school tuition and fees, online learning programs, tutoring, etc. Five states operate education savings accounts.
Individual Tax Credits and Deductions – Parents receive income tax relief for approved educational expenses (such as tuition, books, tutoring, and transportation). Nine states provide individual tax credits and deductions for education expenses.

Aside from logistical concerns about how the President’s education plan would work, many education advocates are voicing concerns over draining public schools of students and funding. This may be of particular concern to special education students who typically benefit from economies of scale in public schools by sharing resources such as aides, therapists, and counselors. In addition, for special education students who are interested in taking advantage of the private school options in their state, it is important to note that most states do not require that students participating in these programs retain their full rights under the Individuals with Disabilities Education Act (IDEA). In fact, a number of states explicitly require that families relinquish their IDEA rights. These and other considerations are critical for families of students with disabilities to consider in deciding whether to support and/or take advantage of these programs that have increased significantly in recent years. Click here for a direct download of The Arc’s School Voucher Parent Decision Checklist.

The Arc on the Reintroduction of ABLE Act Improvement Bills

By: Mike Nagel, Program Associate

Eight members of Congress have re-introduced three bipartisan bills to make improvements to the Stephen J. Beck, Jr. Achieving a Better Life Experience (ABLE) Act. These bills, listed below, are similar to three bills introduced last year:

  • The ABLE Age Adjustment Act (R.1874/S.817) is sponsored by Representative Tony Cardenas (D-CA) in the House, with Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), Christopher Smith (R-NJ), and James Langevin (D-RI) as original co-sponsors; and by Senator Robert Casey (D-PA) in the Senate, with Senators Richard Burr (R-NC) and Chris Van Hollen (D-MD) as original co-sponsors. This bill raises the age of onset of disability for eligibility in the program from before age 26 to before age 46.
  • The ABLE Financial Planning Act (R.1897/S.816) is sponsored by Representative McMorris Rodgers in the House, with Representatives Sessions, Cardenas, Smith, and Langevin as original co-sponsors; and by Senator Casey in the Senate, with Senators Burr and Van Hollen in the Senate. This bill would allow a transfer of funds from a Section 529 College Savings Plan account to an ABLE account. However, funds transferred to the ABLE account would still count toward the annual contribution limit (currently $14,000).
  • The ABLE to Work Act (R.1896/S.818) is sponsored by Representative McMorris Rodgers in the House, with Representatives Sessions, Cardenas, Smith, and Langevin as original co-sponsors; and by Senator Burr, with Senators Casey and Van Hollen as original co-sponsors. This bill would increase the annual contribution limit for individuals who work by the amount they earn, up to the federal poverty level (currently $11,770). When combined with the current annual contribution limit, this bill would allow annual contributions to an ABLE account of up to a total of $25,770 for people who work. Furthermore, it makes contributions to one’s own ABLE account eligible for a Saver’s Tax Credit. However, income earned will still count toward substantial gainful activity for SSI and Medicaid eligibility.

Last year, the Senate Finance Committee approved the ABLE Financial Planning Act and the ABLE to Work Act as amendments to a larger bill, the Retirement Enhancement and Savings Act of 2016 (S.3471). However, the bill did not reach the Senate floor, and no further action was taken. With the start of the 115th Congress in January, the bills must begin the legislative process again in both the House and Senate.

The Arc supports all three bills and believes they offer meaningful improvements to the ABLE
Act. However, on the basis of fairness and equity, The Arc opposes the movement of the ABLE to Work Act or ABLE Financial Planning Act before movement of the ABLE Age Adjustment Act. The ABLE Age Adjustment Act makes more individuals eligible for the program while the other two bills improve the program only for people who are currently eligible. When the ABLE Act was passed in 2014, there was no philosophical basis for limiting the program to those disabled before the age of 26. The bill had been amended to add the age restriction in order to minimize the fiscal impact; in response to disability community concerns, House leadership made commitments to begin restoring the eligibility age as soon as possible. Many people with disabilities who advocated for the law were made ineligible by the age limitation; fairness and equity demand that efforts go to expand eligibility before making the law better for those already eligible.

Many of The Arc’s constituents are among those excluded due to the age of onset requirement. Intellectual disability and developmental disabilities begin before age 26 by definition. However, not all people with I/DD are considered to have the level of severity which allows eligibility for Supplemental Security Income (SSI) or Social Security disability programs—the standard used for ABLE accounts. However, they may reach the necessary severity level, and possible eligibility for the ABLE program, as they age and acquire additional limitations, depending on whether the ABLE program age of onset is increased.

The Arc will continue to support all three bills, but we emphasize that the ABLE Age Adjustment Act should be passed before or together with the other bills.

RE: Clemency for Ledell Lee

Dear Governor Hutchinson:

I write on behalf of The Arc of the United States (The Arc) to urge you to commute the death sentence of Ledell Lee pending a full clinical evaluation to determine whether Mr. Lee has an intellectual disability (ID). The Arc is a national non-profit organization which, for over 65 years, has sought to promote and protect the civil and human rights of individuals with intellectual and developmental disabilities through the work of its national office and over 650 state and local chapters throughout the country. Through its National Center on Criminal Justice and Disability®, The Arc seeks justice for those with ID who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability.

The Arc has deep sympathy for the family and friends of the victims in this case, and we support appropriate punishment of all responsible parties. However, Mr. Lee’s history is replete with evidence indicating a potential ID diagnosis, which would bring him under the protection of the United States Supreme Court’s decisions in Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and the more recent decision in Moore v. Texas, No. 15–797, slip op. (U.S. Mar. 28, 2017).

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID (formerly termed “mental retardation”) and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment, noting that individuals with ID “do not act with the level of moral culpability that characterizes the most serious adult criminal conduct” and that “[n]o legitimate penological purpose is served by executing a person with intellectual disability…to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.” In its 2014 Hall decision, the U.S. Supreme Court further clarified its decision that people with ID not be executed in violation of the Constitution, requiring that adaptive behavior evidence, beyond IQ test scores alone, be taken into account when determining whether an individual has ID. The more recent Moore case further confirms adaptive behavior criteria as necessary in determining whether someone meets diagnostic criteria for ID, and that such criteria must comport with modern clinical and scientific understanding of ID.

The evidence presented by the neuropsychological expert in this case, Dr. Dale Watson, supports the conclusion that if Mr. Lee undergoes a full evaluation, he will likely meet the three prongs of an ID diagnosis: (1) significantly impaired intellectual functioning; (2) adaptive behavior deficits in conceptual, social, and practical adaptive skills; and (3) origination of the disability before the age of 18. In order to complete his analysis, Mr. Lee’s adaptive deficits and history during the developmental period (before age 18) need to be fully assessed. Individuals with ID—like everyone else—differ substantially from one another. For each person with ID there will be things he or she cannot do but also many things he or she can do. Because the mixture of skill strengths and skill deficits varies widely among persons with ID, there is no clinically accepted list of common, ordinary strengths or abilities that would preclude a diagnosis of ID. Thus, the focus in assessing an individual’s adaptive behavior must be on deficits. As recently confirmed in Moore, adaptive strengths are irrelevant to this analysis and IQ alone cannot paint a full picture of whether a person has an ID. Thus, we urge that Mr. Lee receive a full evaluation for ID to determine whether he may be eligible for the Atkins constitutional protection from the death penalty.

Given the high likelihood of ID in this case, it is troubling that the lawyers who represented Mr. Lee throughout his trial failed to properly investigate evidence of Mr. Lee’s potential ID. As a result, no evidence of Mr. Lee’s potential disability was presented to the jury during the sentencing phase of his trial. If a full evaluation confirms Mr. Lee’s suspected diagnosis of ID, then Mr. Lee’s death sentence violates current prohibitions against cruel and unusual punishment as set forth in the U.S. Supreme Court decisions in Atkins, Hall, and Moore.

The Arc does not seek to eliminate punishment of Mr. Lee or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country. I humbly ask that you consider commutation to address the possibility of an unconstitutional miscarriage of justice in the case of Ledell Lee.

Most respectfully,

Peter V. Berns
Chief Executive Officer
The Arc of the United States