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

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

#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

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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The Arc Responds to Three-Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities. We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

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The Arc Expands “Talk About Sexual Violence” Project to Focus on Men With Disabilities

The Arc of the United States is pleased to announce the National Center on Criminal Justice and Disability® (NCCJD®) received a grant from the WITH Foundation to expand its successful initiative Talk About Sexual Violence (TASV). TASV was born out of a partnership between The Arc’s NCCJD and the Board Resource Center (BRC) and serves as a platform for educating healthcare professionals on how to talk to their patients with intellectual and developmental disabilities (IDD) about sexual violence. The WITH Foundation’s grant will expand the program’s current focus on women survivors to include resources about male survivors and the unique barriers they face in disclosing or reporting sexual violence.

Efforts to address sexual violence—even movements like #MeToo—have typically focused on women. However, men also experience sexual violence and have comparatively few resources to support them. Research shows that 14% of men with disabilities will experience violent victimization compared to 4% of men without disabilities. Men are less likely than women to disclose an assault, and men with IDD may be even less likely due to additional challenges they face if they do speak out about it or report it. Health care providers are generally not asking male patients about sexual assault and may not know how to respond if a patient does disclose. 

NCCJD’s Director, Leigh Ann Davis, who has worked in the field of sexual violence prevention of people with disabilities for over 20 years and is a survivor herself, states: “This is a topic of urgent national importance, and we’ve only begun to scratch the surface when it comes to addressing sexual trauma experienced by men with IDD. With support from The WITH Foundation, we can expand our current project, reach new audiences, build new partnerships with male-focused sexual assault organizations and plant seeds for prevention, detection, and healing in the future.”

Health care professionals are in a frontline position to educate patients about and potentially prevent sexual violence. The primary challenge facing health care professionals is lack of training and experience in speaking directly to people with disabilities about this critical issue which can have dire consequences in the person’s life when left untreated, both emotionally and physically. TASV will work to reduce this gap in knowledge by creating brief video clips with supporting training materials healthcare professionals can use to educate and prepare themselves for these sensitive discussions.

While this project will focus its efforts in California, the initiative will have national reach and impact. This grant is part of a larger grant program by The WITH Foundation that is dedicated to addressing the issue of sexual violence against people with disabilities. The WITH Foundation has provided close to $258,000 to six organizations to fund a variety of programs that promote comprehensive and accessible healthcare for adults with IDD.

“It is a privilege to support these efforts as they work to enhance healthcare delivery models, increase the understanding of supported decision-making, and/or address critical issues for adults with intellectual and developmental disabilities” said Ryan Easterly, Executive Director of the WITH Foundation.

 

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December 2018 #HandsOff: Taking My Advocacy to Tennessee!

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

This year The Arc was excited to be able to offer a limited number of scholarships to individuals with disabilities to attend the National Convention in Nashville, Tennessee One of the scholarship winners, Ivanova Smith from Washington, shares her experience below.

By: Ivanova Smith

Ivanova Smith takes a selfie and smiles with her husband and child to her right. On November 7th, I got to go to Tennessee for the first time for The Arc’s National Convention! It was a blast. When I found I won the scholarship, my husband and I saved up so he and my daughter got to come with me and see the sights.

While they were out having fun in the giant Gaylord hotel, I was gaining tons of knowledge and networking at the Conference! One of the first things I got to do was participate in the National Council of Self-Advocates Symposium. It was great getting to hear from other professionals and leaders with disabilities speak on topics such as transportation, housing, and how to be effective in advocacy around public transportation. I even got to speak during an open mic session!

I enjoyed the workshops around people who help women with disabilities who were victims of sexual assault. I also really enjoyed the general session where they spoke about legislative priorities and I got to meet new friends!

I support The Arc’s national efforts in wanting to improve education and promoting self-determination! Friday we got to celebrate awardees who worked on efforts on better inclusion at the Catalyst Awards. One of them is actually my Facebook friend, James Meadours. His speech inspired me to keep advocating in my home state of Washington. On the last day, we got to enjoy Nashville and listen to live music! It was a wonderful time!

Want to learn more about The Arc’s 2018 Convention? Check out pictures here.

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July 2018 #HandsOff Blog: Medicaid and SSI Equal Independence

#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.

Meet Samera! Samera is 27 years old, a poet, and likes to read books, go to concerts, and spend time with her friends and family. She lives in a home in her community, supported by The Arc of Baltimore.

This month America celebrates its independence, but for Samera and many people with disabilities across the country, programs like Medicaid and Supplemental Security Income (SSI) mean independence.

Samera says, “SSI and Medicaid help me to live in the community with independence. SSI helps to pay for my transportation to run daily errands, go to church, and cover the costs of medications and personal items that Medicaid doesn’t cover. Medicaid covers my wheelchair, and because it covers my wheelchair, I’m able to get around and go out, meet new friends, and do all of the things that everyone enjoys doing.”

Check out the video below to learn more about Samera:

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#HandsOff Medicaid for This Rockstar Musician

#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: Rachna Heizer, Member of The Arc of Northern Virginia

I am the mother of Jake, a 16 year old rockstar musician with autism. The first thing you might notice about Jake is he doesn’t maintain conversations, but he can rock your world onstage. He loves to play his guitar and sing. He performed 44 times last year, and even auditioned on Broadway. When Jake was seven years old, he first picked up a guitar and three days later was playing full songs – we knew he had an amazing ability.

Jake and Rachna

Medicaid is an important part of the fabric of our family. Through Medicaid, Jake has an attendant who comes after school to provide care to him so I can continue my job. Jake and his attendant work together on independent living skills. They practice how to have conversations in the community, how to go places, how to be independent, so the hope would be that someday, when he’s out of our home, he can live independently in the community, access grocery stores, run his errands, and live his life like anyone else.

Jake performing on stage

Without Medicaid, I would have to quit my job and it would significantly impact our financial ability to maintain our home. It is a significant support that allows us to help foster Jake’s ability in his music, and provide him a path to the productive world when he is older.

It’s important to say #HandsOffMedicaid because without the supports provided by Medicaid, both my son and I — and many people with disabilities and their families — lose the support and services they need that allows us to stay in our society, gainfully employed and living with dignity amongst everyone — and in Jake’s case, to keep rockin’!

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The Arc Responds to Texas Court of Criminal Appeals Ruling in Bobby Moore Case

Washington, DC – Earlier this week, the Texas Court of Criminal Appeals (CCA) ruled that Bobby Moore did not have intellectual disability and could, therefore, be executed in Texas. The 5-3 CCA decision ignored the request of State prosecutors who—in light of last year’s U.S. Supreme Court ruling in Moore v. Texas—urged the CCA to find that Mr. Moore did meet the criteria for intellectual disability and should therefore have his sentence commuted to life in prison rather than be subject to the death penalty in violation of the Eighth Amendment to the U.S. Constitution prohibiting cruel and unusual punishment. 

“The facts in this case are clear—so much so that prosecutors acknowledged that Mr. Moore met the criteria for intellectual disability following the Supreme Court’s decision—and Mr. Moore should therefore be protected by Supreme Court decisions that ban the execution of persons with intellectual disability as cruel and unusual punishment under the Eighth Amendment. The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our legal advocacy efforts to ensure that the Supreme Court’s decisions are upheld and justice is appropriately served,” said Peter Berns, CEO of The Arc.

Last year, the U.S. Supreme Court vacated the CCA’s prior decision finding that Mr. Moore did not meet the criteria for intellectual disability and could be executed based on its use of stereotypical and outdated factors—instead of well-established clinical standards—to determine intellectual disability in death penalty cases. Judge Elsa Alcala who authored the CCA’s dissenting opinion this week, issued a strong rebuke to the majority: “this Court has set forth an unconstitutional standard for intellectual disability that continues to permit consideration of wholly subjective, non-clinical factors and stereotypes…This Court’s approach…is eerily reminiscent of the seven Briseno factors that were held to be unconstitutional by the Supreme Court.”

The Arc of the United States and The Arc of Texas filed an amicus brief with the CCA in support of Mr. Moore, joining a broad range of prominent entities and individuals with diverse perspectives and views on the death penalty who filed briefs urging the CCA to grant relief for Mr. Moore. The Arc’s amicus brief noted that the framework established by the Supreme Court requiring courts to consult clinical standards in making intellectual disability determinations in death penalty cases laid a sound foundation for the CCA to determine that Mr. Moore meets the criteria for intellectual disability and cannot be executed.

In her dissent, Judge Alcala cited The Arc’s amicus brief, noting that it “correctly observe[s] that ‘there is a wide gap between the clinical definition and expectations that many laypeople have about intellectual disability…these ‘common misimpressions include beliefs that people with intellectual disability are essentially identical to one another and that all are incapable of any but the most rudimentary tasks.’”

In its 2002 decision in Atkins v. Virginia, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID and banned the execution of persons with ID 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. Most recently, in Moore v. Texas (2017), 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 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.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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May 2018 #HandsOff Blog: A Policy and Advocacy Internship With 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: Peter Contos

Peter ContosAs my Paul Marchand Policy Internship at The Arc’s national office in Washington, DC comes to a close, I want to reflect on the importance of advocacy.

Advocacy has always been an important part of my life. My brother and I were raised to try and understand life from various perspectives, and through this I gained an appreciation for people coming from all walks of life. My mother is a speech language pathologist, and many of her students have disabilities. It was through connecting with her students, along with supporting a family member with autism, where I found my calling in disability advocacy.

I was incredibly lucky to attend public schools that were relatively inclusive. My high school offers a class which pairs students from the general and special education curriculums, in subjects like cooking and art. I was fortunate enough to be in the class my senior year, and the relationships that blossomed throughout were very important to me. That class represents one of the most fulfilling and enjoyable moments of my academic career.

Throughout high school, I was also a part of the Miracle League, a baseball league accessible to kids and young adults with a range of disabilities. The enthusiasm and joy that the game brought to players, volunteers, parents, and fans was undeniable, and it was in those moments where I knew advocacy was the right path for me.

Through volunteering with The Arc of Northwest Wayne County (MI) for the past six years, I have attended the Disability Policy Seminar (DPS). DPS is an incredible opportunity for self-advocates and allies to come together to learn more about important policy issues, and the advocacy we can use to support key programs. This year’s DPS featured a few sessions that really empowered me to continue my advocacy work. In the opening general session, we heard from Rebecca Cokley from the Center for America Progress, and Mike Oxford from ADAPT, both of whom have extensive experience as advocates. The personal stories they told were incredibly powerful, and through them, I learned about the tools they use to communicate their priorities. I also attended the Update on Employment Policy session, where we heard from a representative from the Department of Labor and a key Senate staff member, Michael Gamel-McCormick, about the work they are doing to make sure there are enough incentives and training available for employers to hire people with disabilities.

My favorite part of DPS every year is the Hill visits. This year, I was able to meet with three Congressional offices. Using a combination of statistics and personal stories, the group that I attended with effectively advocated for a variety of programs, including Money Follows the Person, but also to protect vital programs like Medicaid and Social Security, along with continuing to promote equity in educational opportunity.

I’ve continued my advocacy through action post-DPS by attending a rally on Capitol Hill opposing cuts and restructuring of the Supplemental Nutrition Assistance Programs (SNAP, formerly known as food stamps). This rally was well attended by disability advocates and coalition organizations, and it was an opportunity to listen to stories about the importance of SNAP — including several by Members of Congress sharing their personal experiences with the program.

I will be graduating from college in June, and I look forward to continuing my advocacy fight wherever I end up. I plan to use the knowledge and tools that I’ve gained since moving to DC to mobilize the communities I am a part of in my future.