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

The Arc Applauds Supreme Court’s Decisive Rejection of Texas’ “Wholly Nonclinical,” “Outlier” Standards in Determining Intellectual Disability

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel
       Ariel Simms, Criminal Justice Attorney Fellow

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

On Tuesday, in the third decision in favor of people with disabilities in the Supreme Court this term, the Court issued a 5-3 decision authored by Justice Ruth Bader Ginsburg in the death penalty case Moore v. Texas. The opinion rejects Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.” This is a major victory in protecting the rights of individuals with intellectual disability in the criminal justice system and in fulfilling the promise of two Supreme Court cases setting the standard that execution of people with intellectual disability is unconstitutional (Hall v. Florida (2014) and Atkins v. Virginia (2002)).

In Atkins, the Court held that executing defendants with intellectual disability violated the Eighth Amendment’s ban on cruel and unusual punishment. Subsequently, in Hall, the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, some states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in a miscarriage of justice for many defendants.

In this case, Bobby Moore, was convicted of killing a store clerk at the age of 20 in a botched robbery along with two accomplices. He was sentenced to death and challenged that sentence on the grounds of intellectual disability. In 2014, a state habeas court ruled that Moore did meet the criteria for intellectual disability and recommended that the Texas Court of Criminal Appeals (CCA) reduce Moore’s sentence to life in prison or grant him a new trial on the intellectual disability claim. On appeal, however, the CCA ruled that Moore did not meet the criteria for intellectual disability, finding that the lower court had failed to apply the seven-factor test laid out in an earlier Texas opinion, Ex Parte Briseno. The “Briseno factors” rely on stereotypes—rather than clinical definitions—through “the consensus of Texas citizens” in defining intellectual disability and are partly based on the character of Lennie in John Steinbeck’s Of Mice and Men. Using these factors, the CCA found that, among other things, Moore’s ability to live on the streets, mow lawns, and play pool for money precluded a finding of intellectual disability and disregarded several IQ tests Moore had taken with scores in the intellectual disability range.

Decisively rejecting this ruling and referring to the Briseno factors as “wholly nonclinical” and an “invention of the CCA untied to any acknowledged source,” the Supreme Court held unanimously that such factors are impermissible to use in defining intellectual disability in death penalty cases. The Court noted that the Briseno factors were an “outlier” and that Texas did not employ this unscientific approach in determining intellectual disability in any legal issues other than the death penalty: “Texas cannot satisfactorily explain why it applies current medical standards for diagnosing intellectual disability in other contexts, yet clings to superseded standards when an individual’s life is at stake.”

Even Justices who disagreed with other aspects of the ruling (Chief Justice John Roberts, Justice Samuel Alito, and Justice Clarence Thomas) agreed that the Briseno factors “are an unacceptable method of enforcing the guarantee of Atkins.” They disagreed that the CCA had erred in its determination of Moore’s intellectual functioning. The dissent criticized the majority opinion for its reliance on clinical standards as opposed to legal interpretation and precedent, noting: “clinicians, not judges, should determine clinical standards; and judges, not clinicians, should determine the content of the Eighth Amendment. Today’s opinion confuses those roles.”

With the American Association on Intellectual and Developmental Disabilities, The Arc filed an amicus brief in August 2016 in support of Moore and The Arc’s attorneys attended oral arguments at the Court in November 2016. The brief, cited in the Court’s opinion, argued that the state of Texas had distorted the clinical definition of intellectual disability by devising a formula of exclusionary factors that rested heavily on stereotypes and the mistaken notion that an ability to do things like engage in relationships, work, and live in the community precluded a finding of intellectual disability based on simultaneous limitations or challenges. Specifically, the brief noted that the “basic framework of the clinical definition is the constitutionally required standard for determining whether a defendant has intellectual disability.” Jim Ellis, a Distinguished Professor at the University of New Mexico School of Law who represented The Arc in this case said: “The Arc of the United States and its state chapters have played a vital role in protecting the rights of people with intellectual disability” in death penalty cases.

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

The Arc has deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. The Arc does not seek to eliminate punishment of Mr. Moore 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 intellectual disability and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

The Arc Applauds U.S. Supreme Court Decision in Special Education Case: “The IDEA Demands More”

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel

On Wednesday, in the second major win for students with disabilities and their families before the U.S. Supreme Court this term, the Court issued a unanimous decision in the special education case Endrew F. v. Douglas County School District RE-1. In an opinion authored by Chief Justice John Roberts, the Court clarified the test for determining whether school districts have met their obligation to provide a free appropriate public education (FAPE) to students with disabilities, definitively rejecting the incredibly low standard utilized by the Tenth Circuit in this case. Specifically, the Court held that:

To meet its substantive obligation under the IDEA, a school must offer an IEP reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances…After all, the essential function of an IEP is to set out a plan for pursuing academic and functional advancement…A substantive standard not focused on student progress would do little to remedy the pervasive and tragic academic stagnation that prompted Congress to act.

Significantly, this is the first time the Court has articulated a specific standard of review for educational benefit required for schools to meet their FAPE obligations under the IDEA. In 1982, the Court held in Board of Education of Hendrick Hudson Central School District v. Rowley that the IDEA establishes a substantive right to FAPE for children with disabilities but declined to establish a specific standard for determining when children with disabilities are receiving sufficient educational benefits to satisfy the IDEA. Lower courts have thus interpreted this substantive right in a variety of ways, some applying an incredibly low standard of review as the Tenth Circuit did in this case, while others have established a higher bar and called for a “meaningful benefit” standard.

Here, Drew, a child with autism, was removed from public school in fourth grade by his parents when his behavior began deteriorating and he ceased making academic progress. His IEP repeated the same basic goals from year to year, indicating a lack of progress toward the IEP goals. His parents believed a dramatic change to the IEP was necessary, but the school district continued to present the same IEP without any meaningful changes. Accordingly, Drew’s parents put him in a private school that specialized in educating students with autism and developed a behavioral intervention plan as well as more meaningful and robust academic goals. As a result, Drew began making dramatic progress. Drew’s parents then met again with the school district who presented them with a new IEP that did not incorporate any goals or approaches that would match the level of services he was receiving at the private school.

His parents filed a complaint with the Colorado Department of Education seeking tuition reimbursement for Drew’s private school due to the school district’s failure to provide him with a FAPE since his final IEP was not “reasonably calculated to enable him to receive educational benefits.” The Administrative Law Judge disagreed and the district court and Tenth Circuit affirmed. Citing Rowley and prior Tenth Circuit precedent, the panel noted that it had long interpreted Rowley’s “some educational benefit” requirement to mean that an IEP was adequate as long as it was calculated to confer an educational benefit that is “merely more than de minimis.” “De minimis” is a Latin phrase meaning “so minor as to merit disregard.”

As noted above, the Supreme Court unequivocally rejected this bare bones approach to evaluating educational benefit and articulated a new, higher standard. The Court explained that when a child with a disability is integrated into the regular classroom, the IDEA typically requires providing a level of instruction that is reasonably calculated to permit advancement through the general curriculum. Where that is not a reasonable expectation, this does not mean that the IEP should be stripped of substantive and meaningful standards. Rather, the IEP:

must be appropriately ambitious in light of [the student’s] circumstances, just as advancement from grade to grade is appropriately ambitious for most children in the regular classroom. The goals may differ, but every child should have the chance to meet challenging objectives. (Emphasis added.)

It is important to note that this decision overturns a standard utilized by Judge Neil Gorsuch who just completed his confirmation hearing before the Senate Judiciary Committee following his nomination to the Supreme Court. Last week, The Arc published a review of Judge Gorsuch’s record on disability rights and highlighted his decision in Thompson R2-JSchool District v. Luke P. in which he employed the merely more than de minimis standard that was later used by the Tenth Circuit in the present case. Dr. Jeffrey Perkins, Luke’s father, testified before the Judiciary Committee on Thursday, noting that Judge Gorsuch’s articulated standard for an educational benefit that is “just above meaningless” was “devastating” to the family and “threatened” Luke’s “access to an appropriate education and thus to a meaningful and dignified life.” As Dr. Perkins explained:

Luke will always need support in a world that still seems perplexing and threatening to him. But his quality of life after 13 years of appropriate education is vastly better than it would have been otherwise. He cooks and does household chores. He is able to shop, work, eat and play in the community…His present life would not have been achievable without an appropriate education.

In his 10th Circuit ruling, Judge Gorsuch eviscerated the educational standard guaranteed by the IDEA…Legal philosophy and case law aside, such an interpretation clearly fails the common sense test. Why would Congress pass a law with such a trivial intent?

The Arc, as part of a large coalition of disability advocacy groups, participated in an amicus brief in support of Drew in November and attended oral arguments before the Court in January. While the standard articulated by the Court is not a detailed formula that specifically defines what appropriate progress will look like from case to case, it is unquestionably more demanding than the standard laid out by Judge Gorsuch and various other circuit court judges. In a time when the ability of people with disabilities to live in the community is under threat, the Court’s unequivocal statement that the “IDEA demands more” is a major victory for students with disabilities and their families that should be celebrated.

What’s at Stake at the Supreme Court for People with Disabilities? The Arc Reviews Judge Gorsuch’s Record on Disability Rights

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel

On January 31, 2017, President Donald Trump nominated Judge Neil Gorsuch of the Tenth Circuit Court of Appeals for a seat on the U.S. Supreme Court. Judge Gorsuch’s confirmation hearing before the Senate Judiciary Committee is set for March 20. A close review of Judge Gorsuch’s opinions pertaining to people with disabilities reveals a jurist with an exceptionally narrow view of the protections offered by federal disability rights laws—an approach that has led to deeply troubling results for members of The Arc in the Tenth Circuit’s jurisdiction. While Judge Gorsuch is a staunch proponent of the inherent dignity of all human beings, including those with disabilities, during his tenure on the Tenth Circuit he has not been a champion for robust enforcement of disability rights laws that are so crucial to enabling individuals with disabilities to lead dignified lives in the community, free from discrimination.

In cases involving the Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the Fair Housing Act in which Judge Gorsuch authored the majority or concurring opinion, he almost always ruled against the plaintiff with a disability. Perhaps the most common thread uniting these opinions is Judge Gorsuch’s strictly textualist approach to interpreting laws. This approach leads him to frequently disregard legislative history and Congressional intent in favor of deciphering the “objective” meaning of the law’s text in a vacuum, ultimately resulting in very narrow interpretations of the protections guaranteed by federal disability rights laws.

For example, in Hwang v. Kansas State University (2014), the plaintiff, a professor who had been employed by the university for 15 years, requested to extend her 6-month medical leave for a finite period. Due to a cancer diagnosis and weakened immune system, she sought to avoid a flu epidemic that arose on campus. When her employer refused to make an exception to its 6-month leave policy, the plaintiff sued, alleging disability discrimination under the Rehabilitation Act. Judge Gorsuch found for the defendant employer on the grounds that, as a matter of law, a leave of more than 6 months was not a reasonable accommodation. In this opinion, Judge Gorsuch demonstrated a troubling view of disability accommodations in the workplace, implying that the plaintiff employee was seeking not to work and should therefore be funneled into the public benefits system rather than the workplace:

Ms. Hwang’s is a…problem other forms of social security aim to address. The Rehabilitation Act seeks to prevent employers from callously denying reasonable accommodations that permit otherwise qualified disabled persons to work—not to turn employers into safety net providers for those who cannot work.

Remarkably, Judge Gorsuch affirmed dismissal of the case prior to fact discovery, thereby precluding the plaintiff from the ability to present evidence. He also failed to engage in the individualized inquiry required in such cases, in conflict with U.S. Supreme Court precedent, guidance from the Equal Employment Opportunity Commission, and four other circuit courts (in addition to a prior conflicting decision within the Tenth Circuit). An amicus brief on behalf of several disability rights advocacy groups requesting a rehearing referred to the decision as “unprecedented.”

Another standout case is Thompson R2-JSchool District v. Luke P. (2008), in which Judge Gorsuch articulated an extraordinarily low standard for educational benefit that is now under review before the U.S. Supreme Court in another case arising from the Tenth Circuit, Endrew F. v. Douglas Cty. Sch. Dist. Re-1. In Luke P., the hearing officer, administrative law judge, and the district court found for the student, noting that the district had failed to provide a free appropriate public education as demonstrated by the student’s inability to generalize the skills he learned at school to settings outside of school. These decisions were based on the notion that this level of minimal progress towards IEP goals was not enough to constitute a meaningful educational benefit under the IDEA. Judge Gorsuch disagreed:

[A] school district is not required to provide every service that would benefit a student if it has found a formula that can reasonably be expected to generate some progress on that student’s IEP goals…Rather, [the IDEA] much more modestly calls for the creation of individualized programs reasonably calculated to enable the student to make some progress towards the goals within that program.

In finding for the school district, Judge Gorsuch rejected the plaintiff’s argument that the purpose of the IDEA, as stated clearly by Congress, was to help students with disabilities achieve more meaningful progress that led to a greater possibility of independent living. Despite legislative history to the contrary, Judge Gorsuch noted that independence was not an outcome-oriented guarantee of the law. In November, along with a large coalition of disability advocates, The Arc submitted an amicus brief before the U.S. Supreme Court challenging this same low standard employed by the Tenth Circuit in the Endrew F. case. In another IDEA case, A.F. v. Espanola Public Schools (2015), where Judge Gorsuch found for the school district, the dissenting judge noted that the outcome “was clearly not the intent of Congress and…harms the interest of the children that IDEA was intended to protect.”

Judge Gorsuch has also demonstrated a narrow view of class actions, a crucial tool for individuals with disabilities to enforce their rights in court. For example, in Shook v. Board of County Commissioners of County of El Pas(2008), Judge Gorsuch affirmed the denial of class certification to a group of plaintiffs alleging that jail conditions for prisoners with psychiatric disabilities violated the Eighth Amendment’s ban against cruel and unusual treatment. In so finding, Judge Gorsuch reasoned that it would be too difficult to craft appropriate systemic relief for the class as a whole given the variety of psychiatric disabilities represented in the class.

These decisions are more than just abstract discussions of legal theories – they have real-life consequences for The Arc’s constituents. In particular, Judge Gorsuch’s effectively pro-school district stance has been devastating for students with disabilities and special education advocates in the Tenth Circuit. Advocates from AdvocacyDenver (a chapter of The Arc), noted that the Luke P. decision was “seismic” for students with disabilities in Colorado, leading school districts to believe that they had a champion in the Tenth Circuit. This dramatically changed their approach to IEP disputes and empowered them to act to the detriment of students with disabilities under the belief that they would almost always prevail in court. Overall, advocates from the chapter noted that the Tenth Circuit offers some of the weakest protections for students with disabilities and their families in the country and that Judge Gorsuch’s decisions on the IDEA have had deeply problematic results for special education advocates and students with disabilities in Colorado.

On the other hand, Judge Gorsuch, like The Arc, is a staunch opponent of physician-assisted suicide. While he has not yet addressed this issue in court, Judge Gorsuch authored a 2006 book, The Future of Assisted Suicide and Euthanasia, in which he notes that: “[a]ll human beings are intrinsically valuable…any line we might draw between human beings for purposes of determining who must live and who may die ultimately seems to devolve into an arbitrary exercise of picking out which particular instrumental capacities one especially likes.” Among other reasons for his opposition, Judge Gorsuch links the practice to the history of societal devaluation of people with disabilities embodied by the eugenics movement, flagging the inherent risk for abuse the system poses for people with disabilities.

Judge Gorsuch’s views on this subject and his recognition of the inherent dignity of people with disabilities reflect an important area of common ground. The question is whether his jurisprudence will ever link this belief in inherent dignity with a robust protection of rights that is so crucial to the ability of people with disabilities to learn, work, and lead dignified lives in the community among their peers. During his tenure on the Tenth Circuit, the answer to this question has largely been no.

More information about Judge Gorsuch’s majority and concurring opinions relating to disability rights can be found here.

The Arc On CBO Score of American Health Care Act “The numbers are in, and they are devastating for people with intellectual and developmental disabilities”

Washington, DC – The Arc released the following statement in response to the Congressional Budget Office’s report on the American Health Care Act, the plan to repeal the Affordable Care Act:

“The numbers are in, and they are devastating for people with intellectual and developmental disabilities. The Congressional Budget Office’s (CBO) score of the American Health Care Act confirms what we already knew – this bill is dangerous and the price we will pay is the health of millions of Americans including those with disabilities. We were promised a replacement for the Affordable Care Act, yet the plan laid out by this bill is insufficient to keep people with disabilities insured or support anyone with complex medical needs. The numbers underscore how dire the situation is, estimating that by next year 14 million more Americans would be uninsured and by 2026, 24 million will be without insurance.

“This bill is paid for by permanently altering the federal/state partnership of Medicaid, the primary health insurance program for people with disabilities. Thanks to the Medicaid expansion under the Affordable Care Act, millions of people, including people with disabilities, their family members, and their support professionals, have gained access to health coverage. Medicaid also is the single largest source of funding for the long term supports and services people with disabilities depend on to live and work in the community, and to avoid even more costly institutional care.

“The American Health Care Act will undo all of that by cutting $880 billion from Medicaid in the next decade, leading to 14 million fewer individuals being covered by Medicaid by 2026. Lives have been saved because people have had access to affordable, comprehensive health coverage, including long term supports and services. It isn’t hard to imagine what the outcome

will be as this program is cut and restructured. CBO anticipated that, in response to changes made by the bill, states could ‘cut payments to health care providers and health plans, eliminate optional services, restrict eligibility for enrollment, or (to the extent feasible) change the way services are delivered to save costs.’ Supporters of this bill are putting the health, wellbeing, and freedom of their constituents with disabilities at risk.

“This bill shows complete disregard for the health of people with disabilities. Claims that this bill makes health insurance more affordable are simply untrue. Look at the numbers, they show the reality of what this legislation will do,” said Peter Berns, CEO of The Arc.

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 over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Applauds U.S. Supreme Court Decision Allowing Independent Disability Discrimination Claims Against School Districts

By: Shira Wakschlag, Director, Legal Advocacy & Associate General Counsel

The Arc applauds this decision which removes important barriers for students with disabilities seeking redress under the ADA and Section 504. The Arc has long advocated for the rights of students and others with intellectual and developmental disabilities to live their lives free from discrimination and with necessary accommodations, to which they are entitled under federal law. This decision is an important step in ensuring robust enforcement and protection of those rights.

In a major win for students with disabilities and their families, the U.S. Supreme Court issued a unanimous decision authored by Justice Elena Kagan on Wednesday in Fry v. Napoleon Community Schools that allows students to bring lawsuits directly under the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 (Section 504) without requesting an administrative hearing under the Individuals with Disabilities Education Act (IDEA) when their claim is not related to the adequacy of their education. The IDEA requires schools to provide specialized instruction and related services to eligible students to help them make progress on their educational goals. In contrast, the ADA and Section 504 prohibit discrimination of people with disabilities of all ages, both in and out of schools, in any public facility or federally funded program. This decision eliminates certain roadblocks that have prevented students from seeking relief directly in federal court when their claims involve disability discrimination under the ADA or Section 504, rather than their educational services and supports under the IDEA. Attorneys from The Arc attended oral arguments in this case before the U.S. Supreme Court last October.

Ehlena Fry, the plaintiff in the case, has cerebral palsy and uses a service dog, Wonder, to assist her with daily activities, such as “retrieving dropped items, helping her balance when she uses her walker, opening and closing doors, turning on and off lights, helping her take off her coat, [and] helping her transfer to and from the toilet.” When her parents asked the school to allow Ehlena to use Wonder in her kindergarten classroom, the school refused. Ehlena’s individualized education program (IEP) under the IDEA included use of a human aide, and the school argued that the aide met all of Ehlena’s “physical and academic needs,” rendering Wonder unnecessary. As a result, Ehlena’s parents removed her from the school and filed a disability discrimination complaint under the ADA and Section 504 with the U.S. Department of Education’s Office for Civil Rights (OCR).

OCR investigated and concluded that the school had discriminated against Ehlena by denying her use of her service dog, just as it would be discrimination to require a student who uses a wheelchair or a blind student to be carried or led around by a teacher or aide rather than permitting the student to use a guide dog or a cane. Following OCR’s investigation and findings, the school agreed to allow Ehlena to attend school with Wonder, but the family chose to enroll her in another school for fear of retaliation. The family also filed a lawsuit in federal court against the school system alleging disability discrimination and seeking monetary damages under the ADA and Section 504 for the school’s previous refusal to reasonably accommodate Ehlena’s use of her service animal. The lawsuit was dismissed by both the federal district court and the Sixth Circuit Court of Appeals who concluded that any claims that were educational in nature had to undergo the administrative hearing process in the IDEA before they could be filed in federal court.

In finding in favor of Ehlena and her family, the U.S. Supreme Court stated that students do not have to exhaust the administrative proceedings required in the IDEA when the essence of their claim is not about the IDEA’s free and appropriate public education (FAPE) requirement, as was the case here. The Court’s opinion offered some general guidance on how to identify whether the IDEA’s FAPE requirement is the essence of a lawsuit against a school, distinguishing between a student who uses a wheelchair suing a school for not having an accessible ramp (which is not about FAPE) and a student with a learning disability suing the school for not providing math tutoring (which is about FAPE). A concurring opinion from Justice Samuel Alito, joined by Justice Clarence Thomas, criticized this part of the Court’s guidance as creating confusion for the lower courts. In addition, because the Frys were not claiming that Ehlena was denied a FAPE under the IDEA, the Court explicitly chose not to address the question of whether students must exhaust the IDEA’s administrative hearing process when the complaint does allege a denial of FAPE but the specific remedy being requested is not available under the IDEA, such as monetary damages.

Though the decision in Fry leaves some questions unanswered, it does eliminate certain roadblocks that have prevented students from seeking relief directly in federal court when their claims involve disability discrimination under the ADA or Section 504, rather than their educational services and supports under the IDEA.

Celebrating 24 Years of the Family and Medical Leave Act

This week, The Arc celebrates the 24th anniversary of the Family and Medical Leave Act (FMLA). This landmark law ensures that millions of workers don’t have to choose between their job and their own health or the health of a family member. Here are three things that people with intellectual and developmental disabilities and their families need to know about the FMLA:

  1. The FMLA offers much-needed leave for workers (including workers with disabilities) and family caregivers. Qualified workers at companies with 50 or more employees can take up to 12 weeks of unpaid family or medical leave each year. The FMLA specifies allowable uses, notably for a worker to address their own serious health condition, to care for a new baby, and to care for a spouse, child, or parent with a serious health condition.
  2. The FMLA protects against job loss. When a worker returns from FMLA leave, the employer must restore the worker to his or her previous job, or an equivalent job with the same pay and benefits.
  3. The FMLA ensures continued access to health insurance. If a worker has employer-sponsored group health insurance, the employer must continue to cover the worker under the same terms and conditions as if the worker had not taken FMLA leave. If the worker’s health insurance covers a family member, that coverage must also continue.

Family and medical leave has always enjoyed widespread public support – but the FMLA was a hard-won victory. Congress considered bills every year for 8 years before finally approving the FMLA on a bipartisan basis. Getting the FMLA across the finish line was testimony to the power of coalition. Organizations representing women, families, workers, seniors, people of faith, businesses, health professionals, and people with disabilities worked closely together to secure the FMLA.

The voices and views of people with disabilities and their families have always been a core part of that advocacy. In the 1980s and 1990s, groups like The Arc were deeply engaged in coalitions working to enact the FMLA, and people with disabilities and family caregivers shared many compelling stories in Congressional hearings and in the media. More recently, thanks to disability community advocacy, in 2015 the Department of Labor clarified that workers can use FMLA leave to care for a sibling with a serious health condition.

The FMLA was an important first step. But more work remains.

Today, about 40 percent of American workers aren’t covered under the FMLA, and many can’t afford to take unpaid leave. Only 14% of workers have paid family leave to care for a new child or seriously ill loved one. And gaps still exist in how you can use FMLA leave, such as being able to use leave to attend a child’s IEP meeting.

That’s why, as The Arc’s Robin Shaffert recently highlighted, we are joining the call for a robust federal paid family and medical leave program that adheres to a core set of principles. All employees must be able to access paid leave of meaningful length and for the full range of needs established in the FMLA. Families come in many shapes and sizes, so “family” must be inclusively defined. Paid leave must be affordable and cost-effective for workers, employers, and the government. And we must ensure that people who take paid leave do not experience adverse employment consequences as a result.

As President Clinton stated when he signed the FMLA into law on February 5, 1993, “Family and medical leave is a matter of pure common sense and a matter of common decency.” We couldn’t agree more. On the FMLA’s 24th anniversary, we celebrate its success and renew our commitment to a robust and inclusive federal paid family and medical leave program.

The Arc On Leaked Draft Executive Order That Would Impact People with Disabilities Legally Residing in the US and Seeking to Legally Immigrate

Washington, DC – In light of a recently leaked draft  Executive Order that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the latest draft Executive Order being circulated in the White House. The Executive Order, if finalized and signed by the President, would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country.  To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before.  But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.  

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We urge President Trump to reject this Executive Order.  We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.

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 over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Navigating School – The Arc@School Launches Website to Help Students with Disabilities and Their Parents with Special Education Advocacy

“The secret in education lies in respecting the student.” – Ralph Waldo Emerson

Opportunities for students with intellectual and developmental disabilities (I/DD) have come a long way since children were warehoused in institutions with no future or a real education. One giant leap forward was the enactment of the Individuals with Disabilities Education Act (IDEA) in 1975, which for the first time required schools to educate all students with disabilities—including students with I/DD.

The IDEA lays out a process that schools must follow to identify which children with disabilities require additional services to learn, and which supports and services a child needs. That process often leads to the development and implementation of an individualized education program (IEP). The IEP is the roadmap for that child to succeed. The IDEA has led to a generation of people with I/DD whose education opened doors to employment and meaningful lives in the community. However, far too many families and students do not experience an IEP process where their role and their rights are clear and respected. Instead, they feel left out of the process, which is often overwhelming and confusing.

So in 2016, The Arc launched a new initiative, The Arc@School, to build the capacity of The Arc’s nationwide network of chapters to support students with I/DD and their families in developing and implementing IEPs that will help students with I/DD graduate from high school and pursue post-secondary education and employment.

Many students and their families seek advocates to help them understand the IEP process and their rights, and many chapters of The Arc provide lay special education advocacy services for students with I/DD and their families. The Arc@School’s newly-launched website aims to be an online resource for students with disabilities, their parents, and advocates that includes information, best practices, and a resource directory, where you can find links and contact information for chapters of The Arc, protection and advocacy programs, parent centers, and state education agencies in your state.

A successful IEP is the foundation for a future in the community, leading a life of one’s own choosing. If we are to improve outcomes for students with I/DD, we must follow Emerson’s guidance and focus on an IEP approach that respects the student’s goals to achieve his or her dreams.

New Project Announcement: The Arc’s National Center on Criminal Justice and Disabilities® (NCCJD) and The Board Resource Center (BRC)

Building Capacity of Primary Care Providers to Discuss Sexual Violence with Women with Intellectual/Developmental Disabilities

Introduction

In September of this year, The Arc’s National Center on Criminal Justice and Disability® (NCCJD) was awarded a one-year grant from The Special Hope Foundation. Working with The Board Resource Center, a California-based consulting firm, this funding will be used to teach health care professionals about how to address and help prevent sexual violence against women with intellectual/ developmental disabilities (I/DD).

Background

This project will address the alarmingly high rate of sexual violence experienced by women with I/DD. About 20% of all women are sexually abused each year. However, women and girls with developmental disabilities are four to ten times more likely to face sexual abuse. Up to 68% of women with developmental disabilities will be abused before they are 18, and up to 90% will experience abuse during their lives (Valenti-Hein, D. & Schwartz, L. 1995).

Health care providers are in a unique position to have open dialogue about sexual violence prevention with their female patients. However, many times they do not have experience talking about victimization with women with I/DD in a manner that is accessible and culturally competent for all. In order for providers to have meaningful conversations about the high risk of violence people with I/DD face, they need training on effective ways to provide patients with safe environments to share their experiences, often for the first time.

By learning how to use effective plain language communication strategies, they can provide a safe place for women to share openly. These strategies can improve communication with all patients, since plain language strategies apply to a number of different populations who struggle with comprehension of information. Ultimately, this project will improve health care delivery by giving providers effective tools to support women with I/DD to discuss or disclose sexual violence.

Project Objectives

This project, funded by The Special Hope Foundation, builds the capacity of primary care providers to discuss the high risk of sexual violence women with I/DD face. It will equip providers with training and tools to create safe, open, and accessible conversations about what sexual violence is and what women can do to report it or stop it from happening. Together, and under the guidance of an advisory committee, we will achieve the following objectives to decrease the incidence of sexual violence: 1) Develop two training videos and materials on discussing sexual violence with female patients. 2) Disseminate tools to health care organizations, regional centers, advocacy groups, and people with I/DD and their families, ultimately reaching 500,000 individuals. 

Both The Arc and The Board Resource Center have a shared vision that emphasizes accessibility, education, and empowerment for people with I/DD.
 

References

Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse interview for those with developmental disabilities. James Stanfield Company. Santa Barbara: California.