Evidence-Based Practices: Connecting the Dots between Research and Practice

Evidence-Based Practices: Connecting the Dots between Research and PracticeWe often hear the terms “best practice” and “evidence-based practice” used in relation to programs or policies – but what does that mean? How do we know if a practice is promising or evidence-based? A recent article, published in Intellectual and Developmental Disabilities, offered perspectives on strategies to gather and evaluate evidence as well as guidelines to establish evidence-based practice. Through a collaboration with AAIDD, The Arc partnered with the lead author, Dr. Robert Schalock, to develop a brief to educate individuals, families, and practitioners on these concepts in hopes of bridging the gap between research and practice.

Learning From Our Peers: Advice on Organizational Transformation From Those Who Have Done It

RRTC BriefAs more community-based providers of supports and services to people with intellectual and developmental disabilities (I/DD) strive to reinvent themselves to offer inclusive opportunities and keep up with Employment First, WIOA, CMS Final Settings Rule, DOJ’s application of Olmstead to employment, and expectations of the ADA generation, organizational leadership may find themselves wondering how to accomplish such a feat. Where’s the finish line? Where’s the starting block?

The Arc believes that people with intellectual and developmental disabilities belong in the community and have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society. The Arc is pleased to be working toward finding and sharing information to support its chapters on their journeys toward community employment with leading employment researchers as a sub-grantee of the Rehabilitation Research and Training Center (RRTC) on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, a project of ThinkWork! at the Institute for Community Inclusion at University of Massachusetts – Boston on a five-year National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant aimed at employment of people with I/DD. As part of this collaboration, staff from The Arc co-conducted interviews with leadership from eight organizations which have transformed their employment service delivery from sheltered work to competitive community employment. A brief sharing advice from those interviews was recently released telling us to Commit. Plan. Engage. Implement.

The next step in this collaboration is an intervention aimed at service providers to aide them in transforming their sheltered workshop models to community-based employment programs. This intervention will provide best practice information and other resources to service providers via a comprehensive toolkit.

We are currently looking for chapters to participate in our intervention pilot this summer. The pilot will be six weeks in duration and will consist of reviewing the toolkit, preliminary planning and implementation of pertinent best practices, and providing feedback to The Arc national staff to ensure that the final version of the toolkit is useful and will best support organizations with implementing the conversion process. If you are interested in learning more or participating in the pilot process, please contact Jonathan Lucus, Director of The Arc@Work at: lucus@thearc.org or at 202.534.3706.

The Arc Responds to Delayed Vote on Senate Health Care Bill That Showed Dangerous Disregard for People with Disabilities

Washington, DC – The Arc released the following statement in response to the Senate delaying the vote on the Better Care Reconciliation Act:

“We are pleased that the Senate is delaying its vote on this dangerous piece of legislation, but we remain vigilant in our opposition to this bill. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the Better Care Reconciliation Act over the last few days. This bill showed a dangerous disregard for the wellbeing of people with disabilities and those with complex medical needs.

“I want to warn advocates that this is a delay, not a defeat of this threat. The bill is still an assault on the rights of people with disabilities. Any Senator supporting this travesty of a bill will be accountable for the negative impact on their constituents and the irrevocable damage it will do to our community based services system. A vote in favor of this bill is a vote in favor of cutting health care coverage from at least 22 million individuals by 2026. Per the budget report, by next year, 15 million more people would be uninsured compared with current law.

“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 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 Senators we need to reach; we need them to realize what is at stake.  Our work is far from over, we will continue to work tirelessly in opposition to this bill. We encourage members of our network to share their stories with their Senators during the upcoming recess,” 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@School Releases Report on Special Education Advocacy and The Arc’s Chapter Network

School may be almost out for the summer, but The Arc@School is still in session.  Now in its second year, The Arc@School continues its mission to build the capacity of The Arc’s nationwide network of chapters to provide individual advocacy that helps students with intellectual and developmental disabilities (I/DD) navigate the special education system.  Equal access to education is a fundamental right for all citizens and an important building block for a strong society.  For students with I/DD, a high-quality education can make an enormous difference in the quality of life and degree of independence they enjoy in adulthood. Special education advocacy is instrumental in ensuring that students’ rights are respected and that they receive the services and supports necessary to graduate from high school and pursue post-secondary education and employment.

With these ideals in mind, The Arc@School conducted an investigation of existing special education advocacy practices and published a report entitled Special Education Advocacy and The Arc’s Chapter Network: Findings from The Arc@School.  Students with I/DD, parents, educators, and advocates can find:

  • A brief overview of the Individuals with Disabilities Education Act (IDEA) and the growth of non-attorney lay advocacy in special education;
  • A description of the curriculum, length, and cost of current advocacy training programs, such as Wrightslaw and the Council of Parent Attorneys and Advocates (COPAA);
  • A description of The Arc networks’ current capacity for providing individual special education advocacy;
  • A summary of the current limited academic research on best practices in special education advocacy; and
  • A list of program recommendations that The Arc@School intends to implement in the coming years, such as a suggestion that The Arc@School collaborate with the COPAA, PTI Center, and protection and advocacy networks to ensure that scarce special education advocacy resources reach as many families as possible.

To read the report, please see Special Education Advocacy and The Arc’s Chapter Network.

The Arc Promotes Workforce Development for Egyptians with Disabilities through U.S. Department of State Exchange Program


[WASHINGTON, DC] The Arc will host Michael Mikhael, Executive Director and founding member at the Farah Foundation for Development in Alexandria, Egypt as a fellow in the U.S. Department of State’s Professional Fellows Program (PFP). This two-way exchange embraces the power of individual citizens to find creative solutions to challenges they face in both the United States and around the world. During the month-long fellowship program, mid-level foreign leaders and their U.S. counterparts build sustainable partnerships while enhancing their leadership and professional skills.

While in Washington, D.C., Michael will be exposed to innovative strategies of workforce development for people with disabilities. He will also have the opportunity to gain hands-on exposure to the different advocacy efforts that nonprofit organizations utilize in the struggle for disability rights. This parallels the PFP’s objective of broadening the professional expertise of individuals from around the world working to address common challenges, all while building enduring partnerships among American and foreign participants.

Michael comes to the U.S. with a strong background of supporting persons with disabilities. As early as 1993, he saw the need for economic empowerment programs that catered to individuals with disabilities while engaged in a church-led disability program, Faith and Light. Subsequently, in 2010, he established the Farah Foundation that has developed partnerships with the United Nations’ International Labor Organization (ILO) and the U.N. Development Programme (UNDP) to implement a labor market access and entrepreneurship program for people with disabilities. The foundation also created a database where individuals may seek disability-friendly employment. Additionally, the agency developed an artisan-craft program through which women and people with disabilities are taught marketable craft skills. In addition to these workforce activities, the Farah Foundation supports an orphanage for children with disabilities in Alexandria, Egypt. Upon returning home, Michael believes this new knowledge will help his organization incorporate more sustainable, comprehensive programs for people with disabilities in Egypt.

“The Professional Fellows Program (PFP) is an extraordinary opportunity, and The Arc is thrilled to participate. During Michael’s month-long fellowship, not only will he gain invaluable advocacy and technical skills he can use when he returns to the Farah Foundation, but The Arc will simultaneously also deepen its cultural competency knowledge and understanding. It’s a win for both of us,” commented Jonathan Lucus, Managing Director, The Arc@Work.

The Arc is one of hundreds of U.S. organizations chosen to host Professional Fellows participants from more than 40 countries and territories this spring. At the conclusion of the program, May 30-June 1, more than 270 fellows will gather in Washington, D.C., for the Professional Fellows Congress, a three-day concluding event aimed at preparing fellows to implement follow-on projects upon their return home.

Since 2010, more than 2,000 participants from more than 77 countries have taken part in the PFP in cities across the U.S., and approximately 1,000 American hosts have participated in reciprocal exchanges overseas.

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.

Follow @ProFellows on Twitter and join the conversation using #ProFellows.

For press inquiries please contact:

Kristen McKiernan, Senior Executive Officer, Communications (mckiernan@thearc.org)

U.S. Department of State, Bureau of Educational and Cultural Affairs: eca-press@state.gov

The Arc Video Offers Disability & Family Perspective on Looming Healthcare Reforms

Washington, DC – Today, The Arc is releasing another video illustrating how Congress’ proposed changes to the Affordable Care Act (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 family’s story is shared by thousands of families across the country who are imploring Congress to keep the ACA and leave Medicaid untouched to allow their loved ones to continue to receive the supports they need to live full and independent lives. Here are some of the key ways in which the passage of the American Health Care Act (AHCA) will impact Toby, Lindsay and Calvin, and others in the intellectual and developmental disability community:

  • Proposes a more than $800 billion cut to Medicaid over the next decade, the program which provides funding for essential services for people with intellectual and developmental disabilities to live independent and healthy lives;
  • Allows for insurance companies to discriminate against people with disabilities by using pre-existing conditions as a pretext for higher and often unaffordable health care premiums;
  • Places more pressure on states to support an already under-funded program, which will result in smaller budgets, less coverage and fewer services for people with intellectual and developmental disabilities.

“The Arc opposes the AHCA and the proposed changes to the bill, as both will have widespread and terrible consequences for people with intellectual and developmental disabilities and their families. Congress needs to realize that a vote for the proposed health care reform is a vote against the health and wellbeing of their constituents, which include people with disabilities,” said Marty Ford, Senior Executive Officer, The Arc.

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.

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 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 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.

Chapters of The Arc are Getting Media Coverage on the ACA and Medicaid

Members of Congress are constantly seeking ways to know what’s going on back home and what their constituents care about. One way their offices do this is by monitoring their local and state newspapers every day. When constituents get published or quoted, members of Congress and their staff pay attention.

Several chapters of The Arc have gotten such well-deserved attention in the last several weeks. They have clearly and persuasively articulated the concerns of thousands of people with intellectual and developmental disabilities (I/DD) in their communities regarding the Affordable Care Act (ACA) and the Medicaid program.

David Thielen, CEO of The Arc of East Central Iowa, had a guest column printed in the Iowa Gazette at the end of December regarding the effects of block granting Medicaid. He made the point that there are only three main levers when costs are shifted to cash-strapped states under a block grant – reducing eligibility, limiting services and supports, and cutting reimbursement to providers. Three weeks later, he followed up with another guest column published in the Cedar Rapids Gazette explaining the tangible benefits of the ACA to individuals with I/DD. These include improvements to long-term supports and services, tax credits to improve affordability of health insurance, banning discrimination based on pre-existing condition, ending annual and lifetime caps, and requiring plans to provide a comprehensive set of benefits including rehabilitative and habilitative services and devices.

Robert Hage, President of The Arc of New Jersey wrote a letter to the editor on January 15 that appeared in five local news outlets. He discussed the increased access to private insurance and Medicaid expansion provided by the ACA, and noted that “repeal may make a good soundbite – but what Americans with I/DD need now is more than talk – they need action that keeps the promise of the ACA.”

Three other chapters were interviewed in news stories in January, including a television interview. Nancy Murray of The Arc of Greater Pittsburg at ACHIEVA was quoted in the Pittsburgh Post-Gazette regarding Medicaid block grants, “Right now, [this] is the No. 1 concern among disability advocates. We are scared to death.” In an article in the Wisconsin State Journal, Lisa Pugh of The Arc Wisconsin reinforced the few, stark options that states would face under a block grant, “Any form of a reduced funding structure from the federal government means likely one of three things: cuts to programs, cuts to benefits, or elimination of certain populations of people in Medicaid.”

Heather Denman, Executive Director of The Arc of Harrison and Rockingham, appeared in a segment on Virginia’s WHSV 3 to highlighted the ACA’s provisions on ending annual and lifetime caps on health insurance coverage, eliminating pre-existing condition discrimination, and providing funding for services outside of institutions. “The biggest piece is just taking something away and not having anything that is there to replace it and worrying about people who have preexisting conditions,” she stated.

The Arc is proud of its network of over 660 chapters across the country who work hard everyday advocating for people with I/DD and their families. We are pleased to see more and more in the press as a result of this as informed and passionate spokespersons.

Building the Bridge to Inclusion through Technology

Many day-to-day technology tasks have become so intuitive for many of us that it’s easy to forget life before these clicks and swipes. For people with I/DD, these skills can make a world of difference by building bridges to community participation.

In 2016, through our partnership with Comcast NBCUniversal, six chapters across the country hosted “Learning Labs” to foster digital literacy skills in their constituents. The classes’ content varied between chapters based on individual needs:

The Arc Baltimore (Maryland)
The Arc Baltimore’s labs provided an overview of Assistive Technology and a demonstration of devices and software to address communication, computer access, eating, environmental control, hearing, home safety, memory and cognition, telephone access, recreation, and vision. Stories were shared on how individuals have utilized devices. A certified Assistive Technology Professional worked one-on-one with participants to identify and experiment with tools that would be a good fit for them.

Easter Seals Arc of Northern IN (Indiana)
Easter Seals/The Arc of Northern Indiana hosted an instructional computer lab focusing on life skills, employment, internet safety, and money management. The session was so successful that one participant found a job he was interested during the class. The next day, he submitted an application online for that job at Game Stop and landed an interview.

The Arc of Prince George’s County (Maryland)
The Arc of PG County hosted labs covering topics related to independent living, including eating healthy, resume building, tech tools for reading, grocery shopping, job seeking/applications, money value, and understanding maps. At the conclusion of the event, local companies even pledged to employ more people with I/DD! One participant, Brianna, found a screen reader helpful—it helped her pronounce words correctly in addition to easier reading. She compared it to audible books and thinks it “unleashes the power of spoken words”.

NewStar Services (Illinois)
NewStar’s labs had a strong focus on iPad skills, including skills for independent living like taking pictures, iMovie, iModeling, maps, planning a trip, and setting and using reminders. Three Learning Lab participants, David, April, and Charles, requested additional labs on the Maps app, and were surprised to learn that there are bus stops extremely close to their houses that will help them gain independent access to the community.

The Arc of San Francisco (California)
The Arc of San Francisco’s labs were centered on using technology for independence and employment. Topics covered included internet safety, Microsoft, LinkedIn, online job searching, and the basics of email. One participant, Kristin, was struggling with how to best use LinkedIn. After working on her picture, resume, endorsements and recommendations in the lab, Kristin landed interviews at both Google and LinkedIn!

The Arc of Lane County (Oregon)
Topics on computer basics, including terminology, parts, safety/care, and typing, were covered. They worked in Microsoft Word, Publisher, Powerpoint, and used email and iPads. Most importantly, they learned about internet safety issues like identity theft protection, safe passwords, and digital footprints. “When asked about his favorite part of the class Jason exclaimed, “I was really excited to make my resume and get closer to my dream job”.

Through this simple exposure to the basics of digital technology, participants are building the skills that will support them to become more independent within their communities. We look forward to expanding Learning Labs to more chapters and building the skills to succeed in people across the country!