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Next Stop: Success! Building a Sustainable and Effective Transportation Program

/in , /by The Arc

A TravelMate participant sits on the metro train holding an iPad.

In 2014, The Arc of Northern Virginia collaborated with software partner ONEder to develop the award-winning TravelMate program. TravelMate provides virtual support on a smartphone or tablet, facilitating more independence using the bus, train, and other transportation. By the end of the second year of the program, 96% of users had increased their ability to travel more independently, and nearly half were able to travel completely independently.

How was the TravelMate program born?

In 2013, The Arc of Northern Virginia received a grant from the Federal Transit Administration to develop more travel trainers for individuals with developmental disabilities. There was most certainly a need; at the time there was only one travel trainer at the Washington Metropolitan Area Transit Authority dedicated to working with individuals with developmental disabilities for all of Maryland, D.C. and Virginia. Kymberly DeLoatche was hired to coordinate the project and in her search for a well-liked travel training program, she found that a universal option didn’t exist. Most staff just kind of “did it on their own”. At the same time, Metro had completed a travel training study, and one of the primary insights was that individuals with developmental disabilities took longer to train because they required more repetition of the trip in order to be successful.

A year prior, while Kymberly was attending an Autism Society conference, she noticed an exhibitor who had created an iPad app using real time photos and videos to support an individual with disabilities. She had seen how powerful the iPad could be in the hands of someone with autism and already knew from watching her son, who has Down syndrome that he would watch videos over and over and then get up and perform the action exactly the way it had been done in the video – an “a-ha” moment about how learning uses visual cues.

Putting these two experiences together was the inspiration for the creation of TravelMate. Kymberly called the creator of the software program she saw at the conference and explained her idea about doing an online curriculum that outlines all the steps in taking public transit. ONEder immediately jumped on board and TravelMate was born. It has been a life changing partnership.

Tell us about the community partnership element. What was the process like getting stakeholders and partners on board?

The Arc of Northern Virginia is fortunate to have a wide circle of community partners. When we first recruited individuals to form a Travel Training Project Advisory Board, it was an easy ask. We brought representatives from school districts, the local Community Services Boards, the Department of Aging and Rehabilitative Services, private and public employment providers, and of course parents and individuals with developmental disabilities. Teachers and job coaches guided the development of the curriculum and assessments. Individuals with developmental disabilities were involved in creating and presenting on curriculum, guides, and training programs. Having this level of community involvement from the very beginning is a key element of the continued success of our programs.

What are some secondary effects you’ve seen as a result of the success of the program?

Using visual cues and photos with a touch screen has proven to be a vastly superior format for learning for individuals with developmental disabilities. TravelMate allows each individual to use a format (visual checklist, choice board, social story, or real time photos or videos) that works best for them. The technology also allows them to get the repetition they need to succeed without having to actually perform the task with a job coach or teacher. Working with schools, transition teams, and employment providers in the community provides a more seamless transition for the individuals from school to the work environment. From the very first training program in 2014, we saw school programs adding more curriculum time for travel training and not just “making it up on their own” as they had been doing in the past.

What – if any – are your next steps for expanding the program’s scope or reach?

The Arc of Northern Virginia has already created and launched the companion to TravelMate called EmployMate. It is like having a virtual job coach in your pocket. Because the ONEder platform is 100% customizable to individual needs, a job coach or teacher can go to the employment site as they normally do, create needed activities, monitor performance, and adjust the curriculum accordingly from their laptop.

With the success of these two curricula, The Arc of Northern Virginia’s Tech for Independent Living team is creating additional ‘Mates to address other daily living tasks. In development now are: DailyMate, for daily home living activities; MoneyMate, for budgeting and banking; SocialMate, for navigating personal and professional relationships; and SafetyMate, for navigating interactions with law enforcement and safety tips for home, work and community.

How can other chapters start programs like this in their communities? 

Any chapter could write a grant for funds for training and licenses to start a program like this in their community. We started with using 5310 Mobility funds from the Department of Transportation’s Federal Transit Administration.

Without having to recreate the wheel, other chapters that have employment programs could use our ‘Mates curricula immediately with their current clients. The curricula can be provided directly, or a chapter can use a “train-the-trainer” model as we have done, to engage partners in the community. For any additional information, feel free to email Peter Leisen, Project Coordinator, at pleisen@thearcofnova.org or phone 703-208-1119 ext. 112.

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Rhode Island Advocate to Testify in Congress on Impact of Restraint and Seclusion on Son With Autism

/in , /by The Arc

On Wednesday, February 27, Rhode Island advocate Renee Smith will testify in Congress before the U.S. House Education and Labor’s Subcommittee on Early Childhood, Elementary, and Secondary Education hearing on the use of restraint and seclusion in schools.

The hearing is titled “Classrooms in Crisis: Examining the Inappropriate Use of Seclusion and Restraint Practices”, and Smith was invited to testify because of her now eight-year-old child’s traumatic experiences in school. When Dillon, who has autism spectrum disorder, was in kindergarten and first grade, he and his parents struggled with the school administration for proper, positive supports for him. Restraint and seclusion were repeatedly used to manage Dillon’s behavior, despite the fact that his parents knew other positive methods would lead to a better outcome, and positive reinforcement was a part of the documented individualized education program (IEP) for Dillon with the school.

Far too many times, Dillon was restrained and dragged into the “blue space” – a walled and padded area, with a small opening with a pad cover to keep a child from leaving the space. Again and again, situations escalated to the point where 9-1-1 was called, and if Dillon’s parents didn’t arrive before the ambulance, he would be taken alone to the hospital. The repeated trauma of restraint and seclusion, the threat of going to the hospital, and continued interruptions to his education were having a major impact on Dillon and his family.

“Dillon’s work avoidance, we now know, was in direct reaction to the restraint and seclusion he was experiencing. The more he was restrained and secluded, the less he was interested in school work, which resulted in more restraint and seclusion, a constant downward spiral. It broke my heart when Dillon told us that he no longer trusted any of the adults in that school. Without the school working with us to change this dynamic, we had to do something – we found another public school with a different approach,” said Smith.

Dillon started fresh at a new school, where the behavior program allows children to float between a special education classroom and a regular education classroom for work. There are several cool down spaces and one open space within the office of the school behaviorist. Teachers provide positive reinforcement in their classrooms and one-on-one with their students. Within only two weeks of the new placement, Dillon was in a regular education classroom 100% of the time with supports.

“At his old school, Dillon was trying to communicate that the strategies used were not working for him and not allowing him to develop coping skills for the future. Today, Dillon is doing really well. With the proper supports, he has blossomed as a student and enjoys school,” said Smith.

The Arc Rhode Island (RI) Family Advocacy Network (FAN) recruited Smith to bring this perspective to the halls of Congress. The Arc RI FAN is a newly created office that will lead state-level public policy activities as well as provide training, public awareness and education, and grassroots advocacy building to protect the rights of Rhode Islanders with intellectual and developmental disabilities (IDD). The Arc has tapped Joanna Scocchi, founder of Rhode Island Advocacy for Children, as the Director. The Arc RI FAN joins a network of more than 620 state and local chapters of The Arc that provide direct support services and advocate for the rights of people with IDD around the country.

“Dillon’s experience is horrifying, yet it’s happening in schools across Rhode Island and across the country. Nationally, students with disabilities are roughly 20 times more likely than their peers without disabilities to be restrained and secluded. Our kids deserve better – the approach to their education and the environment in which they learn are key ingredients to their success,” said Scocchi.

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February #HandsOff: Advocating With Young Children

/in /by The Arc

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Julie Ross, The Arc of Texas

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My almost seven-year-old daughter Niko is fun and full of energy, loves dancing, singing, and doing daredevil stunts. Niko adores her big sister, playing with her homeschool friends and caring for younger children. In addition to keeping up with her, my job has also been to advocate for her healthcare, inclusion, and civil rights – and it began the day she was born. Niko has Down syndrome and congenital heart disease. While she was still recovering in the NICU, a social worker explained to us about Medicaid and “waitlists”. The social worker said to apply for state and federal healthcare services immediately, even though some of these were adult services, because the wait was 14 years and growing. Afterwards, I joined my state chapter of The Arc and The Arc of the United States and learned that we could impact these issues—and more. We have high expectations for Niko, so if we could eliminate barriers that prevent her from reaching her potential, we were willing to demand change. From the start, we knew Niko would be at the center of these advocacy efforts.

Policies at both the state and federal level greatly impact Niko’s access to services and healthcare she needs to live a full, happy life. And it often feels as if the impact of legislation on the disability community isn’t being considered by elected officials. In order to become a better advocate, I joined state and national disability advocacy organizations and attended rallies led by self-advocates. Niko and I made a host of new friends and I was mentored by other families. I drove with both of my daughters to our state capitol to meet with our elected officials to advocate for Medicaid and Early Childhood Intervention funding.

We took advice from The Arc and contacted our federal lawmakers. Niko and I made office visits to Senator Ted Cruz and Senator John Cornyn’s district offices. We talked about the importance of phasing out subminimum wage, fully funding Medicaid, saving the Affordable Care Act, and supporting legislation such as Money Follows the Person to ensure Niko could live free from the threat of institutionalization. At these meetings, I would carry a stash of snacks and coloring books to entertain Niko while I did most of the talking (although she would vocalize occasionally and toss cookie crumbs on the floor). Whenever I felt fear or intimidation of how lawmakers and staff may react to my child attending our meeting, I would remind myself that my taxpayer dollars pay for their offices and these lawmakers work for us! Most of all, I want lawmakers to know my daughter’s name, face, and story to remind them of what is at stake when they vote. And to make that connection, it is important for them to meet Niko in person.

We always try to make a lasting impression. Once we even celebrated Niko’s birthday in our Senator’s offices. I brought balloons, cupcakes, and birthday cards for their staff to sign and share with the Senators – urging them to protect Medicaid and ACA to preserve Niko’s healthcare protections so she could celebrate many more birthdays. And last Valentine’s Day, we asked our Congressman to “have a heart” and oppose a dangerous bill that would have weakened the protections afforded by the Americans with Disabilities Act.

We’ve seen the positive changes that result from state and national disability advocacy. When we exercise our constituent power and families, individuals, and self-advocates deliver our “ask” and our personal stories – we make a tremendous impact. And while Niko still acquires new interests and hobbies as she grows up, I’m delighted that she and I can include advocacy as an integral part of our family life.

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Supreme Court Reaffirms Commitment to Clinical Standards, Not Stereotypes, in Determining Intellectual Disability in Death Penalty Cases

/in , , , /by The Arc

The U.S. Supreme Court issued a per curiam (published in the name of the Court rather than specific judges) opinion today reversing the Texas Court of Criminal Appeals (TCCA) and finding that Bobby Moore is a person with intellectual disability and his execution is prohibited by the Eighth Amendment to the U.S. Constitution’s ban on cruel and unusual punishment.

“The Arc applauds the Court’s decision today which again 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 is grateful to the Court for taking a strong stance today to ensure that its precedent on this issue is properly interpreted in jurisdictions around the country,” said Marty Ford, Senior Advisor, The Arc.

This is the second time Mr. Moore has sought relief from the Supreme Court and won. In 2017, in the same case, the Court rejected 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.” The Court then sent the case back to the TCCA to determine whether Mr. Moore had intellectual disability in light of its opinion. Following the TCCA’s 2018 finding that he did not have intellectual disability, Mr. Moore again petitioned for Supreme Court review. Notably, the prosecutor in Mr. Moore’s case—the district attorney of Harris County—filed a brief in support of Mr. Moore noting that, in light of the Supreme Court’s 2017 opinion, Mr. Moore is an individual with intellectual disability who cannot be executed.

In its opinion today, the Court noted that “Moore has shown he is a person with intellectual disability” and that the most recent TCCA opinion must be reversed because it continued to exhibit “lay stereotypes” of people with intellectual disability despite the Supreme Court’s clear instruction to rely on well-established clinical standards instead. Chief Justice Roberts, in a concurring opinion, noted that while he still believes the original Moore opinion “lacked clarity,” “it is easy to see that the Texas Court of Criminal Appeals misapplied it here…the court repeated the same errors that this Court previously condemned…” Justice Alito, joined by Justices Thomas and Gorsuch, dissented, noting that “The error in this litigation was not the state court’s decision on remand but our own failure to provide a coherent rule of decision in Moore.”

The Arc filed amicus briefs on Mr. Moore’s behalf when he first went before the Supreme Court in 2016 and again when his case was remanded to the TCCA in 2017.

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with intellectual disability and banned their execution as cruel and unusual punishment under the Eighth Amendment. Subsequently, in Hall v. Florida (2014), 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. The Court’s 2017 and 2019 decisions in Moore v. Texas have strengthened this precedent by emphasizing the need to rely on well-established clinical standards—rather than stereotypes—in making intellectual disability determinations in death penalty cases.

The Arc has deep sympathy for the family and friends of the victim in this case, and we supported appropriate punishment of all responsible parties. The Arc did 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 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.

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Workers Speak Out on Disability and Health: New Report on Paid Family Leave and the Disability Angle

/in /by The Arc

Today, The Arc of the United States (The Arc) and the National Center for Children in Poverty (NCCP) at Columbia University’s Mailman School of Public Health are releasing Disability Perspectives on Paid Leave: A Qualitative Analysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions. This ground-breaking research examines how workers with disabilities and working caregivers of people with disabilities use, need, and benefit from paid family and medical leave. It is one of the only studies to specifically explore whether current paid and unpaid leave policies and programs for working individuals meet the needs of the disability community. Findings offer key insights on how existing leave policies can become more inclusive to this historically under-served group, and highlight the need for a comprehensive, national paid leave policy.

Researchers at NCCP conducted and analyzed in-depth interviews with 90 workers with disabilities and working caregivers in California, New Jersey, New York, and North Carolina. Major findings include:

  • Workers with disabilities and working caregivers take leave for diverse and often disability-specific reasons.
  • Workers want to maximize their time at work and benefit when they can use paid leave in conjunction with other employment benefits.
  • Workers highly value the Family and Medical Leave Act (FMLA) and state-administered paid leave options, which in this study included programs in California, New Jersey, and New York.
  • Multiple barriers and gaps limit workers’ access to leave, including fear of job loss and stigma against disabilities. In states with paid family and medical leave insurance, certain program features also limit access, including low awareness and understanding of the program, inadequate wage replacement, narrow or unclear covered reasons for leave, and inadequate coverage for self-employed and public workers.

Based on these findings, the paper provides recommendations for how policymakers, employers, and advocates can make it easier for all workers to take leave from work during a stressful period of their lives. Most importantly, the findings provide a road map for an inclusive national paid leave policy.

“Our goal with this paper is not only to inform, but also to expand the national dialogue to make paid leave policies and proposals stronger and more inclusive. As this study’s findings show, paid leave is extremely important for people with disabilities and their families, including people with intellectual and developmental disabilities. At The Arc, we believe that our nation can and should put in place an inclusive, comprehensive national paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. We hope this paper provides the blueprint leaders need to advance this process,” said T.J. Sutcliffe, Senior Director, Income & Housing Policy, The Arc.

The need for paid family and medical leave is universal – nearly all of us will need paid leave at some point to care for a family member, address our own serious medical condition, or welcome a new child into our family. The disability perspective, however, has often been missing from the national conversations and research on paid leave, despite the fact that roughly 1 in 5 Americans has a disability. As such, there is a huge gap in understanding on how the disability community uses paid leave, the frequency of use of this benefit, and whether current federal and state policy frameworks and available paid leave programs meet the disability community’s needs.

“It is crucial to hear from working individuals directly affected by serious health conditions and disability to understand how paid leave policies can work better for them. Our in-depth conversations with workers revealed important patterns and policy considerations that deserve more discussion, such as the need for an inclusive definition of family and flexibility to take leave for myriad reasons. This study bolsters current survey research on disability and paid leave by contributing the lived experiences of working individuals,” said Dr. Heather Koball, Director of NCCP.

About the Study: This qualitative study aimed to (1) understand common usage patterns of unpaid and paid leave programs, (2) to assess the priorities of working caregivers and workers with disabilities regarding taking leave from work, and (3) pinpoint ways in which key stakeholders can better support this population of workers. The research team asked participants their reasons for taking leave and about their leave-taking patterns, as well as what factors influence their access to specific leave benefits.

The National Center for Children in Poverty (NCCP) is a non-partisan public policy research center at Columbia University’s Mailman School of Public Health. Founded in 1989 with endowments from the Carnegie Corporation of New York and the Ford Foundation, NCCP is dedicated to promoting the economic security, healthy development, and well-being of America’s low-income children and families. Using research to inform policy and practice, the center seeks to advance family-oriented solutions and strategic use of public resources at the state and national levels to produce positive outcomes for the next generation.

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Spotlight: Kyle Piccola and Ana Martinez Lead Education Efforts at The Arc of Texas

/in /by The Arc

The criminal justice system is filled with gaps in how it navigates and addresses the needs of people with disabilities. In an effort to address this, Kyle Piccola and Ana Martinez are leading education efforts at The Arc of Texas. Utilizing Pathways to Justice®, they are bringing together law enforcement, victim advocates, legal professionals, and others to build relationships and understanding and create safer communities across the state. We chatted with them about the success of the program, how they’ve been able to implement it, and the future of criminal justice reform.

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What made you want to focus on criminal justice reform in Texas? Why did you choose Pathways to Justice as one of the vehicles for your efforts?

ANA: People with IDD experience several disadvantages that make them more vulnerable to becoming involved in the criminal justice system as suspects and victims. A one size fits all approach does not give people with IDD equal and fair treatment when they come into contact with criminal justice system. Texas is a large state with diverse cultural and socio-economic differences. The Pathways to Justice training provides the opportunity for us to bring together police officers, self-advocates, lawyers and judges, victim service providers and community advocates for a training geared towards the needs of that particular community. Our efforts have begun to create systemic change that sparks legislative initiatives and induces a collective and actionable charge for our state.

Can you tell us about what implementing Pathways to Justice has been like for your chapter, and for your community? Did you face any challenges recruiting community partners in law enforcement or victim services, and how did you overcome them?

KYLE: The community wanted and needed this as much as we did! We built a coalition of partners just as fast as we welcomed the program to Texas. Our Pathways to Justice program has strengthened the relationships we have with existing coalition partners and helped us build relationships with new ones. The response has been extremely positive – both from the professional advocates and individuals seeking the training. Our local law enforcement agencies welcomed the opportunity because they understand well that law enforcement agencies are coming into contact with people with IDD more and more. Since our first Pathways to Justice training, The Arc of Texas has been included in all of the Austin Police Department’s training curriculum. For first the time, the Austin Police Department has five hours of IDD specific training for their cadet class.

How has Pathways – along with your other criminal justice advocacy efforts – helped build community awareness of The Arc and its mission?

ANA: Pathways to Justice has vastly raised overall community awareness on the need and desire for people with IDD to be supported in the community. We’ve built relationships with organizations that were only marginally aware of our work and mission. This year we honored the Travis County Mental Health Public Defenders Office and the Austin Police Department as our Community Partners of the Year at our annual Leadership and Legacy Event. Partnering with Austin Police Department and Travis County allowed us to achieve a broader and more meaningful impact.

Why is important for chapters of The Arc to help lead the way on criminal justice reform for people with IDD?

ANA: Once an individual with IDD has a criminal record, success in community life becomes substantially more difficult, especially considering existing barriers in employment, housing, and other basic elements of economic security. An unjustly gained criminal record jeopardizes the capability of an individual with IDD to lead an independent life, and often ends up costing millions in tax dollars to support an individual through institutional social services. Texas still runs 13 institutions where too many people with IDD end up because they were never given the supports needed to secure appropriate criminal justice representation. This barrier to an independent life can be lessened if there is sufficient community awareness and training to identify and support people with IDD, especially when they first come into contact with the law.

What advice would you give to other chapters looking to establish criminal justice initiatives?

KYLE: As soon as people heard that The Arc of Texas was working on issues related to criminal justice, we began to receive a lot of inquiries from self-advocates, families, and advocacy organizations needing support. As your chapter begins to build a criminal justice program, plan for the influx of people needing support. This was not something that I necessarily envisioned having to staff up as quickly as the need arrived.

To bring Pathways to your chapter or find out about other ways to get involved with NCCJD: