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

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.

Stories make us stronger: Please share yours through the 2017 FINDS survey

By: Amie Lulinski, PhD, FAAIDD
Director, Research and Evaluation

Data comes in a variety of forms: charts, graphs, spreadsheets, reports, articles. No matter the shape it takes, data tells a story. Those stories play a powerful role in advocacy through demonstrating the great things people with intellectual and developmental disabilities (I/DD) are doing as well as showing where the gaps in supports and services remain. These gaps can become giant caverns in the life of individuals with I/DD and keep them from realizing their full potential.

Our advocacy for and with individuals with I/DD is at its best when we have concrete data to back it up. That’s why we need your input on our crucial FINDS Survey. In 2010, The Arc and the University of Minnesota’s Research and Training Center on Community Living conducted the Family and Individual Needs for Disability Supports (FINDS) Survey: a groundbreaking and needed examination of the supports that people with I/DD receive across the country. The research team received responses from parents, siblings, and other caregivers detailing their perspectives on the supports their clients and loved ones receive in education, employment, community living, and other life-span activities.

The results of this survey, highlighted in a summary report published by The Arc in 2011, revealed that many people with I/DD were failing to receive the supports needed to live independent and fulfilled lives. For example, the 2010 data told us that 60% of family caregivers provide 40 or more hours of support per week. This data is used to advocate at the federal and state policy levels for increased funding in in-home supports and respite services.

In an effort to remain informed and responsive to the challenges facing today’s disability community, The Arc and the University of Minnesota are conducting the 2017 FINDS survey. This survey comes at a critical time for many within our community, as current proposals will have an impact on the future of many of the funds and support services that people with I/DD currently benefit from. Please help us paint a modern and diverse picture of I/DD across America by participating in the 2017 FINDS survey.

The survey seeks caregivers (family or otherwise) living in the US and its Territories aged 18+ who provide frequent, primary support to share their experiences. The deadline to submit a completed survey is April 30. Please click on this link to fill out a survey online, download a copy in English or Spanish, or forward the link to a friend!

Please let me know if you have any questions by emailing me at Lulinski@thearc.org.

 

The Arc Responds to The House Pulling Vote on The American Health Care Act

Washington, DC – The Arc released the following statement following the House of Representatives pulling the vote on the American Health Care Act (AHCA): 

“We are pleased that this dangerous piece of legislation is not being considered on the House floor. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the American Health Care Act over the last few weeks. This bill showed a callous and dangerous disregard for the wellbeing of people with disabilities and those with complex medical needs.

“We want to acknowledge the amazing advocacy of The Arc’s grassroots advocates across the country who have been fighting tirelessly to protect the Affordable Care Act and Medicaid.  Earlier this week, we had nearly a thousand advocates gathered in Washington, DC to share their stories and show their Members of Congress that this is more than just politics, this is life and death for people with disabilities. The last few weeks gave the disability rights movement an opportunity to show their strength. Collaborating with our colleagues across the disability rights movement, health advocates, and social justice groups was an empowering experience. We remain unified and ready to fight future threats together.

“Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation and programs like the Americans with Disabilities Act, Individuals with Disabilities Education Act, the Social Security Disability Insurance Program, Supplemental Security Income, Medicaid and other important laws. The American Health Care Act had the potential to erase decades of progress if significant changes weren’t made.  We will continue our efforts to change the hearts and minds of those who supported this bill and help them understand that their constituents 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. Those are the Members of Congress we need to reach; we need them to realize what is at stake.  While we are heartened by this victory, we will remain vigilant. We know our work is far from over,” 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.

Urge Congress to Vote No on the American Health Care Act

Urge Congress to Vote No on the American Health Care Act.

The House of Representatives is planning to vote today on the American Health Care Act. The vote is expected to be very close.  Late last night, the House added a change to the American Health Care Act that will repeal the essential health benefits (EHB).  This will make a bad bill even worse.

As it is, the bill is dangerous to people with disabilities.  It cuts $880 billion out of the Medicaid program and uses it to help pay for tax cuts for the wealthy, corporations, and providers. The March 20th Managers Amendment further weakens Medicaid by ending the Medicaid expansion earlier, offering Medicaid block grants to states, and imposing work requirements.

The latest move to ensure that health care plans do not cover these needed services is an attempt by the White House and the House Majority to gain the support of enough Representatives to pass the bill.  There are some in Congress who believe these benefits are too generous and costly, and insurers should have the option to drop them.

The repeal of the essential health benefits also effectively removes the prohibition against annual and lifetime limits on health care coverage.  

Even worse, it will likely make it harder for people with pre-existing conditions to find health care plans that adequately meet their needs.

Here are the essential health benefits you stand to lose if this bill becomes law:

  • Doctor visits and other outpatient care
  • Emergency services
  • Hospitalization
  • Maternity and newborn care
  • Mental health and substance abuse disorder services including behavioral health treatment
  • Prescription drugs
  • Rehabilitative and habilitative services and devices
  • Laboratory services
  • Preventive and wellness services and chronic disease management
  • Pediatric services including oral and vision care

The essential health benefits were designed to ensure that health plans cover basic needs and they have been critically important to people with disabilities and chronic health conditions. From this list, habilitation and rehabilitative services and devices are particularly important. Habilitative services are health care services that help a person keep, learn or improve skills and functioning for daily living. This category includes physical, occupational, and speech therapy, as well as medical equipment such as wheelchairs.

Without a requirement that basic services be included in the health plans, insurers are likely to drop coverage of therapies or medications that would attract people with more health care needs.  Even if people with pre-existing conditions can find adequate plans, it is very unlikely that they would be affordable.  Most of the protections to ensure affordable health care are also repealed.

Urge the Members of the House of Representatives to oppose the American Health Care Act. It is a threat to the health of people with disabilities and chronic health conditions and it is a threat to our decades long, bipartisan work to secure community based services for people with intellectual and developmental disabilities.

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 are the 5 Worst Things About the ACA Repeal Bill?

Recently the House Energy and Commerce Committee and Ways and Means Committee passed legislation to cut Medicaid and repeal major portions of the Affordable Care Act (ACA). This bill is moving fast, and we expect the House to vote on it this week. Simply stated, this legislation is devastating. Here’s why:

For over 50 years Medicaid has been a Federal/State partnership where the costs were shared between the states and the federal government. Under this cut and cap proposal, the federal government is turning its back on the states and leaving huge funding gaps for the states to fill.
  1. People with disabilities get slammed by Medicaid cuts
    $880 billion would get cut from the Medicaid program over the next decade. This cut comes from 1) changing the financing structure of the program to a per capita cap model, and 2) phasing out the “Medicaid expansion,” which incentivizes states to cover people up to 138% of the federal poverty level (income of $16, 642 per year) for an individual.

    The result is a cost shift to states that would likely force states to choose among options such as:

    1. Cut eligibility. People with disabilities, low income adults, children, pregnant women, and seniors could be cut from the rolls.
    2. Cut services. Current “optional” services such as in home services, assistive technology, transportation, supported employment, and much more could be up for grabs.
    3. Cut quality. If federal Medicaid regulations are lost, it could be cheaper for states to warehouse people with disabilities in institutions rather than provide quality home and community based services.
  1. Millions of Americans will lose health care
    According to the nonpartisan Congressional Budget Office, there will be 24 million more Americans without health insurance by 2026. This includes 14 million fewer people enrolled in Medicaid. This reality contradicts the many assertions from the President and many Members of Congress that no one would lose health care.
  1. Middle class families pay more
    For moderate-income families, the ACHA’s reduction in tax credits could make coverage out of reach. For families with income below 250% of poverty, estimates show that by 2020, when many provisions of the bill kick in, costs would increase by over $9,000.
  1. The tax breaks favor the rich, corporations, and health care providers
    The ACHA repeals many of the tax provisions that are used to help finance the ACA.   Millions of low and moderate income people would lose their health insurance to pay for $600 billion in tax cuts for the rich and the insurance, drug, and medical device industries. This includes $285 billion in taxes for the top 2% of earners and the elimination of the cap that insurance companies can deduct from their taxes for executives making over $500,000 per year.
  1. Prevention Takes a Hit
    The Prevention and Public Health Fund, which provides crucial financial support for public health and other services that assist people with disabilities. would be gone in 2018. According to analysis by the Trust for America’s Health, the U.S. Centers for Disease Control and Prevention would lose 12 percent of its annual budget if the Prevention and Public Health Fund is repealed.

Celebrating the Far Too Often Lost Right to Make Your Own Decisions

During Developmental Disabilities Awareness Month, The Arc celebrates the decision to allow Ryan King, a man with intellectual and/or developmental disabilities (I/DD), to make his own decisions.

According to a Washington Post column, Ryan King is a man in his 30s who was placed under the guardianship of his parents when he turned 18. For over 15 years, Ryan has worked at Safeway (a major grocery store chain in the Washington, DC area) and has been able to manage his own day-to-day needs.  For far too long, families like Ryan King’s, have been told they must put their children under guardianship without educating them on other less restrictive decision-making options. Too often courts have approved petitions for guardianship without first carefully exploring whether less restrictive alternatives could be effective.

Last year, Judge Russell F. Canan of the Superior Court of the District of Columbia, Probate Division empowered Ryan King to make his own decisions. Judge Canan ruled that through the use of supported decision-making Ryan was able to independently “receive and evaluate information effectively” and “communicate decisions.”  The court terminated the guardianship over Ryan King. In re: Ryan Herbert King, 2003 INT 249 (D.C. Super. Ct. October 6, 2016) (unpublished order).

The Arc believes that people with I/DD, such as Ryan King, must be presumed competent to make their own decisions. Through the process of supported decision-making, people with I/DD work with family members, friends, and other trusted advisors to get the support they need to make their own decisions and to build decision-making skills.  Depending on each person’s needs, legal agreements can be put in place to enable supporters to help implement the person’s decisions.  This can include appointing a representative payee or using powers of attorney, health care directives, and supporter agreements.  Simply put, supported decision-making promotes autonomy and should always be explored along with other less restrictive alternatives before guardianship is considered.

The Arc and our Center for Future Planning® are committed to promoting autonomy and expanding the use of decision-making supports. Here are some things we are focusing on:

Information. Families should have access to information about all options for assisting their family member to make decisions over the life course. Schools should not give legal advice to students and families, and should provide students and families with information about less restrictive alternatives to guardianship.

Skill-building. Individuals with I/DD should have access to supports and experiences to learn decision-making skills from an early age and throughout their lifetimes in educational and adult life service systems.

Less Restrictive Alternatives. State laws should require that less restrictive options are tried and found ineffective before guardianship is considered.

Rights. Regardless of their guardianship status, all individuals with I/DD retain their fundamental civil and human rights (such as the right to vote and the right to make decisions related to sexual activity, marriage and divorce, birth control, and sterilization) unless the specific right is explicitly limited by court order.

To explore decision-making options and to get tips on how to build decision-making skills, visit The Arc’s Center for Future Planning®.