Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

COVID-19 Legislation First Step in Addressing Crisis for People With Disabilities, Families

Washington, D.C. – People with intellectual and developmental disabilities (I/DD) are facing threats to their health and wellbeing due to the global COVID-19 pandemic, and the legislation passed by Congress and on its way to President Trump’s desk is a start in addressing their needs in this crisis.

The legislation includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic;
  • Emergency requirements for all health insurers to cover testing;
  • Expanded nutrition assistance and crucial waivers for the Supplemental Nutrition Assistance Program and school meals;
  • Expanded unemployment insurance; and
  • Limited paid sick day and paid leave provisions that do not explicitly include caregivers for people with disabilities.

“This crisis is going to have a major impact on people with intellectual and developmental disabilities, their families, and caregivers, and this legislation is a good first step in meeting their needs. As this crisis evolves, more will have to be done at the federal level for all Americans, particularly those with disabilities, their families, and caregivers,” said Peter Berns, CEO, The Arc.

The Arc is working hard with legislators to ensure that the next package more directly covers the unique needs of people with disabilities, their families and the direct support workforce:

  • An additional FMAP increase that creates a grant program to support access to home and community-based services and to support the direct support professional (DSP) workforce with better pay during the crisis, and greater flexibilities in hiring and service provision.
  • A permanent reauthorization of the Money Follows the Person program, or MFP, which gives funds to states to move people with disabilities out of segregated settings and into the community. There is a real threat to unnecessary institutionalization. The flexibilities and funds from permanent MFP will support states to continue transitions to the community and away from congregate settings.
  • Economic stimulus with increased asset limits. For people with I/DD receiving Supplemental Security Income (SSI) and/or Medicaid, strict asset limits must be maintained to receive the benefits. We strongly support stimulus for low income individuals, but because of the asset limits, people with I/DD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid. Asset limits should be increased or paused to ensure that people with disabilities are able to benefit from the stimulus without jeopardizing their benefits.

“Without addressing these issues, the lives of people with disabilities and their families could be altered with no turning back. People could be placed into institutions and other congregate settings in violation of their rights and posing risk to their health. Families could be more pressed to choose between a paycheck and health and well-being. And our current DSP workforce crisis could get even worse, impacting day to day life for millions of people with disabilities. We have an opportunity in the coming days to address these big issues, and we are urging Congress to act swiftly,” said Berns.

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 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Two green vending machines, one with food and one with drinks, next to each other

Getting Creative With Fundraising at The Arc of Iowa

The Arc of Iowa was struggling financially with local chapters closing, memberships declining, and a growing need for advocacy related to managed care moving into the state. They wanted to build a social entrepreneur program that would help augment current fundraising and membership dues. The program needed to increase the awareness of The Arc of Iowa, engage existing chapters, and be a program that could be grown in both rural and urban communities. In what felt like a do or die moment, the board and director took a leap and spent every dime on building 28 vending machines that were placed in four communities across the state. We chatted with the Executive Director of The Arc of Iowa, Doug Cunningham to learn how the program works.

What does the manpower behind the vending machines look like? How do you fund, place, stock, and maintain them?

We partnered with Goodwill to assist with staffing statewide. One individual can stock three to four machines a day. They sort products based on a checklist, package them, and take them to the location. They then put the items in the machines, count the items, clean the machine, and digitally fax the inventory back to the State Office each day. We placed machines in the Goodwill Service Centers and on their store floors, programs that serve individuals with disabilities, and local businesses. They recruit workers with varying abilities and we train them to stock and service the machines. They even donated space in their local service centers to warehouse products. The sales are GPS monitored and we can see when machines require service or stocking from a central location. The machines cost between $4,000 to $7,000 a piece and require about $1,500 in coins and stock to set up. The machines are expected to have a useful life expectancy of 10 to 15 years.

Where does profit from the machines go?

Annually the machines generate about $5000 to $7000 a piece. Merchandise costs about 35% of what we can sell it for and labor is an additional 20%. We give the local sites 10% of the revenue and we used the remaining proceeds to build a new interactive website, a new statewide fund raising tool that local chapters can use,  training for self-advocates, fund a liaison at the State Capital, pay affiliation dues, and to further grow the vending program.   

How the initiative resulted in new or amplified relationships with other organizations/companies throughout the state?

One of the biggest challenges that the vending machines helped us overcome is getting out of our state offices and forcing us to work in the local communities. There was a disconnect between the state office and the local chapters. The vending machines required us to know the staff in Goodwill, our local chapters, and other agencies that allowed us to place machines in their facilities. It also gave us a unique way to inspire donors to invest in The Arc of Iowa again. In fact, a donor ended up paying off $70,000 of our machines and challenged the community to assist which generated another $25,000 in gifts.   

What are your hopes for the long-term growth and sustainability of the program?

We currently have 28 machines across the state which generate $90,000 annually. We hope to have hundreds of machines that generate an endless and consistent stream of revenue that can promote advocacy for years to come. After three years, and the generosity of donors, the machines were profitable and now provide a steady stream of revenue every day.  

How can other chapters explore and implement similar revenue-creating ventures?

The company that builds these machines can ship and set them up internationally. This opportunity is still in its infancy, and we made mistakes—however, there is room in the profitability to make those mistakes and learn from them. To make the program successful you need to think big. Build lots of machines and the infrastructure around it. The more machines you have, the better the value and the more efficient you become. Be interdependent with your local chapters for the highest impact. To make The Arc relevant, the community needs to see us. These machines, staffed by people with disabilities and used as big marketing machines, can promote awareness and foster financial independence for your chapter. Please feel free to reach out to me at doug@thearcofiowa.org for further questions.

The Arc logo

The Arc, Allies, and Self-Advocates Finally ‘Stop the Shock’

WASHINGTON – After too long of a wait, The Arc celebrates a victory in our seemingly never-ending fight to underscore the value and human dignity of the lives of people with disabilities. After years in limbo, the Food and Drug Administration announced Wednesday it will finally ban the use of the electric shock device that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents.

“The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to ‘stop the shock’ and to end abusive and cruel practices masquerading as ‘behavioral treatments.’ People with disabilities deserve to live free from fear and torture. The FDA’s decision, years in the making, to ban the use of the electric shock device is a hard-fought victory and a testament to what is possible when disability advocates fight their hardest for change and for the civil rights of people with disabilities. We hope the ban is a significant step in ending the use of all aversive procedures on people with disabilities, who deserve to be supported with dignity,” said Peter Berns, CEO, The Arc.

A woman in a floral bathing suit lays in a beach chair by the pool, smiling

This Black History Month, We Salute Lois Curtis

Lois relaxing at the pool

This Black History Month, we celebrate the life and legacy of our African American heroes. They endured, persisted, and paved the way – for us all.

The Arc salutes Lois Curtis. Ms. Curtis’ bravery and refusal to live behind the dark walls of a state institution led to the landmark U.S. Supreme Court Olmstead v. L.C. decision in 1999. The case established that unjustified segregation of people with disabilities is a form of discrimination under the Americans with Disabilities Act – and that people with disabilities have a right to live in the community rather than institutions.

More than 20 years after Ms. Curtis returned to the community, she is living life to the fullest.

“I am doing pretty good,” Ms. Curtis tells The Arc.

She lives in her own home near Atlanta, Georgia. Ms. Curtis, 52, has a new and blossoming passion for singing and song writing. She enjoys writing original songs and her own versions of Motown hits. Ms. Curtis records at a local recording studio and takes keyboarding lessons. She is also invited to sing for groups in the Atlanta area.

Ms. Curtis says singing makes her feel good and reminds her of good memories with her mother.

These days, Ms. Curtis travels often with her family and direct support professional. She enjoys vacationing in Florida and her family is currently planning a trip back to Miramar Beach.

She loves church, going to the movies, shopping, getting her nails done, and going out to eat. Her favorite cuisine is Mexican.

Ms. Curtis’ longtime direct support staff Pertula Mark says it is a joy to see her happy. There are some tough days when Ms. Curtis talks about her time living in the institution or runs into people she knew at the facility.

Despite the pain of the past, Ms. Curtis, Olmstead co-plaintiff Elaine Wilson, who died in 2005, and attorney Sue Jamieson inspire us all to keep fighting for inclusion, community living, and equality for people with disabilities.

Thank you, Ms. Curtis!

Photo of desks in a classroom with dim, moody lighting

Class Action Complaint Filed in West Virginia Alleging Systemic Disability Discrimination in Kanawha County Schools

Charleston, WV – The Arc of West Virginia is joining parents of a child with autism in filing a class action complaint in federal court in Charleston alleging widespread failures by Kanawha County Schools (KCS) to educate children with disabilities, including autism, intellectual and developmental disabilities, mental health issues, and Attention Deficit Hyperactivity Disorder (ADHD). Specifically, the complaint, filed Friday, asserts that KCS—the public school district serving the Charleston metro area—has failed to provide behavioral supports to students with disabilities and is instead punishing them by sending them home instead of educating them. Attorneys for The Arc of West Virginia and the parents—Disability Rights of West Virginia, Mountain State Justice, The Arc, the Bazelon Center for Mental Health Law, and the global law firm Latham & Watkins LLP—allege that KCS has violated federal laws protecting students with disabilities.

“The Arc has long fought for students with intellectual and developmental disabilities to be educated in their neighborhood schools, with appropriate supports,” said Liz Ford, Executive Director of The Arc of West Virginia. “KCS’ systemic failure to provide such supports to students with disability-related behaviors has led to punishment, segregation from classmates without disabilities, and loss of valuable instruction time. This is unacceptable to The Arc and our constituents in West Virginia.”

“Students with disabilities and behavioral support needs can thrive in school, graduate with diplomas, and transition to successful adulthood provided they receive the appropriate supports to which they are entitled under federal law. It is critical that KCS take responsibility for teaching all of its students, not just some,” said Jeremiah Underhill, Legal Director of Disability Rights of West Virginia.

Data from the West Virginia Department of Education shows that over 1,000 children with disabilities enrolled in KCS were removed from their classrooms during the 2018-2019 school year after their schools suspended them. This number does not include all of the additional students with disability-related behaviors whose schools asked their parents to take children out of the school before the end of the school day, or to keep them at home, without formally suspending them. It also does not include students with disabilities who were expelled from school for their behavior; those who were separated unnecessarily from mainstream classrooms and moved to segregated classrooms where they interact only with other students with disabilities and receive an inferior education; or those who were placed on “homebound” status where they may receive only a few hours of tutoring each week. These students are not receiving critical behavioral supports that can help them be successful in the general education classroom with their classmates without disabilities.

“It is heartbreaking to see KCS undermine the great potential of students with disabilities by failing to provide necessary supports and, ultimately, removing them from the classroom, causing them to fall farther and farther behind academically and socially,” said Lewis Bossing, Senior Staff Attorney with the Bazelon Center. “And the problem is only getting worse: in the 2018-2019 school year, KCS removed nearly 250 more students with disabilities from the classroom than in the prior academic year, despite overall KCS enrollment decreasing during that same period.”

Specifically, the complaint alleges that KCS is: 1) violating the Individuals with Disabilities Education Act (IDEA) by failing to provide children with disabilities with the special education they need to receive a “free appropriate public education” in the least restrictive environment; and 2) violating the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and the West Virginia Human Rights Act by failing to educate children with disabilities in the most integrated setting appropriate to their needs, and denying them equal educational opportunity.

“We are seeing KCS discipline students with disabilities for ‘infractions’ as minor as touching another student with a plastic fork or refusing to get off the playground slide at the end of recess. Students are receiving behavior supports that take the form of rote “code of conduct” checklists rather than the individualized supports that the IDEA requires to adequately support children to succeed in school,” said Lydia Milnes, an attorney with Mountain State Justice.

In 2017, the U.S. Supreme Court held unanimously in Endrew F. v. Douglas County School District RE-1 that the “IDEA demands more.” Specifically, the Court provided a new and more demanding standard for what schools must do to adequately educate students with disabilities, requiring that school districts provide “an educational program reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances” and provide students with disabilities the opportunity to meet “challenging objectives” with “appropriately ambitious” special education. For virtually all children, this means receiving instruction and services in the general education classroom, with appropriate supports, alongside students without disabilities. In addition, in 1999, in Olmstead v. L.C., the Court held that the ADA prohibits the needless isolation or segregation of people with disabilities. The ADA applies to public schools, which cannot unnecessarily segregate students with disabilities, nor deny them equal opportunities.

“KCS’ systemic failures to support students with disabilities in the least restrictive, most integrated setting, and overuse of punitive disciplinary measures for behavior that is disability-related, cannot be justified in light of recent and longstanding Supreme Court precedent,” said Michael Faris, Latham & Watkins partner. “By failing to adhere to the IDEA and ADA, KCS is diminishing our clients’ ability to secure the education to which they are entitled by law. We look forward to ensuring that the law is upheld.”

About The Arc

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families. In partnership with its network of 650 chapters across the country, including The Arc of West Virginia, The Arc works to promote and protect the rights of people with I/DD to live, work, and learn in the community free from discrimination. To learn more, visit www.thearc.org and www.thearcofwv.org

About Disability Rights of West Virginia

Disability Rights of West Virginia (DRWV) is the federally mandated protection and advocacy system for people with disabilities in West Virginia. DRWV protects and advocates for the human and legal rights of persons with disabilities. To learn more, visit https://www.drofwv.org/.

About Mountain State Justice

Mountain State Justice is a non-profit legal services firm dedicated to redressing entrenched and emerging systemic social, political, and economic imbalances of power for underserved West Virginians, through legal advocacy and community empowerment offered regardless of ability to pay. To learn more, visit https://mountainstatejustice.org/.

About The Judge David L. Bazelon Center for Mental Health Law

The Judge David L. Bazelon Center for Mental Health Law is a national legal advocacy organization protecting and advancing the rights of people with mental disabilities. The Center promotes laws and policies that enable adults and children with mental disabilities to live independently in their own homes, schools, and communities, and to enjoy the same opportunities that everyone else does. To learn more, visit www.bazelon.org.

About Latham & Watkins LLP

Latham & Watkins LLP is global law firm with more than 2,700 lawyers located in Asia, Europe, the Middle East, and the United States. For more information, please visit its website at www.lw.com.

Stack of binders filled with papers

The Arc Fights Rule That Would Unfairly Strip Disability Benefits

Washington, D.C. – The Arc urges The Social Security Administration (SSA) to withdraw its proposed rule that would force people with disabilities and their families to repeatedly prove their disability – putting the critical benefits of thousands of people in jeopardy. The rule would increase how often adults and children with disabilities have to gather and submit mounds of tedious paperwork and other documentation to show the federal government that their disability has not suddenly gone away.

Continuing Disability Reviews can be extremely complicated. People with disabilities, their families, their teachers, and service providers often spend weeks gathering information and making sure forms are filled out correctly. Even a minor error on the form can put not only Social Security or Supplemental Security Income (SSI) benefits at risk, but also Medicaid services and other benefits.

“It is unfair for the federal government to burden people with disabilities and their families with the unnecessary and overwhelming task of constantly proving their disability. People with intellectual and developmental disabilities typically require services and supports throughout their lifetimes and will not cease needing services. The Social Security Administration’s new rule would also further open the door to costly applicant and administrative errors, leading to the loss of benefits despite eligibility and the devastating domino effect for people with disabilities and their families. We need the government to consider the looming damage and withdraw this rule immediately,” said Peter Berns, CEO, The Arc.

The Arc is also asking the disability community and supporters to oppose the new rule by submitting as many public comments as possible to the federal government before next week’s deadline of Friday, January 31. We want supporters to submit comments here explaining why the rule is harmful and how Social Security and SSI help people with disabilities. The government must read and respond to public comments before it makes the rule final.

The proposed rule would:

  • Require people with disabilities to fill out cumbersome paperwork 2.6 million more times over the next ten years
  • Cut $2.8 billion in Social Security and SSI benefits
  • Put the benefits of thousands of people with disabilities at risk
silhouette of a hand casting a paper ballot into a box

The Arc Announces Voter Accessibility Project for Iowa Caucuses

Washington, D.C. – In advance of the Iowa caucuses, The Arc is announcing its new CaucusAbility project to help ensure that people with intellectual and developmental disabilities (I/DD) in the battleground state have the opportunity to participate in our democracy in accessible, fair, and valuable ways.

The Arc will host pre-caucus trainings where Iowans with I/DD can learn how to caucus, practice the process, and also team up with a partner with disabilities or without disabilities to encourage caucus participation and to attend caucuses together.

People with disabilities face voter accessibility challenges and barriers to the caucus process, from crowded gymnasiums to limited seating. The caucuses are also unique in format – attendees may go in with a preference for a candidate, but throughout the event they will listen to other caucus goers make pitches for their preferred candidate. Quickly analyzing and processing the information and making an informed decision in that environment can be daunting. Furthermore, Iowa’s new and untested satellite caucus system for remote participation may be an additional barrier for people with I/DD.

WHO: The Arc

WHAT:  CaucusAbility

WHEN/WHERE:

Wednesday, January 15 Collegiate United Methodist Church Annex, Ames 1 p.m., 5:30 p.m.

Friday, January 17 Sioux City Public Museum, Sioux City 11 a.m., 12:30 p.m.  

Monday, January 20 Iowa City Public Library, Iowa City 10:30 a.m., 12:30 p.m.

WHY: Voter Accessibility

“The Arc is dedicated to a fully inclusive society for people with intellectual and developmental disabilities and that includes the right to civic engagement. Having the support of a partner at the Iowa caucuses and the opportunity to practice in advance will help people in the disability community exercise their right to vote. We know that in 2012, one in five voters with disabilities experienced a barrier at the polls. We believe CaucusAbility helps address some of the unique accessibility challenges Iowans with disabilities experience at the caucuses, despite equal access protections under civil rights law,” said Peter Berns, CEO, 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 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A woman in a motorized chair plays with a small dog on a grassy field in front of houses

Community Living Program Extension Passes: 2020 Year to Advocate for Deinstitutionalization

Washington, D.C. – This week, instead of finalizing a deal that would provide certainty and stability to a program that moves people with intellectual and developmental disabilities (I/DD) out of institutions and into the community of their choice, Congress reauthorized the program for only five months.

The Money Follows the Person program, or MFP, provides funds to states to continue their work on deinstitutionalization, by paying for programs not normally covered by Medicaid, such as housing and employment services. MFP has moved more than 91,000 people with disabilities and aging adults out of institutional settings and back into the community, where they belong. The program has also shown better quality of life outcomes and Medicaid savings averaging 20% per beneficiary per month.

Just a few weeks ago, a bipartisan deal was on the table to permanently extend the program. But in the final negotiations, the length of the support of the program was changed to five months.

“While this is a disappointing turn of events, we have our marching orders for 2020 – advocate, advocate, advocate for a permanent commitment to Money Follows the Person. There is widespread, bipartisan support for this successful program. If we are going to achieve the goal of bringing people out of the dark shadows of institutions to live meaningful, independent lives in the communities of their choice among their family members and peers, with appropriate supports and services, then Congress has to step up. We are ready to help make that happen in 2020,” said Peter Berns, CEO, 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 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Couple hugging outside both with eyes closed

Paid Leave for Federal Workers Approved by Congress but Falls Short for Disability Community

Washington, D.C. – This week, Congress approved 12 weeks paid parental leave for federal workers caring for newborns, newly adopted children, and foster children, but the benefit falls short. Federal employees with disabilities and their family members need paid time off for their own medical needs and for caregiving for reasons beyond welcoming a new child and we are disappointed that the country’s largest employer now has a paid leave policy that does not include these crucial components.

“We are somewhat encouraged to see Congress take a small step in the right direction, but this paid parental leave policy is not enough. We need comprehensive paid leave for everyone that works for everyone, including people with disabilities and their families. We will continue to advocate for the needs of the disability community in paid leave – Congress can and should do more,” said Peter Berns, CEO, The Arc.

In the U.S. workforce, only 1 in 6 workers has access to paid family leave to care for a family member with a serious health condition. Roughly 2 in 5 workers report they lack access to any paid leave. People with disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment that can render the financial impact of unpaid time off particularly devastating.

Comprehensive paid leave increases opportunities to take time off for a serious medical condition or to care for someone with a serious medical condition without seeing a sharp drop in income or putting one’s job or employer-based health insurance at risk. In addition, it can increase access to preventive care, such as going to doctor’s appointments, and lead to better overall health and well-being. Access to paid family and medical leave can help workers balance their personal care needs while working and providing support to a family member.

“Our expectation is that the federal government set the tone for other employers to enact paid leave policies that work for everyone. We will keeping fighting on this issue so that workers with disabilities and families that include people with disabilities one day have the comprehensive leave they need to contribute in the workforce and take care of their families,” said Berns.

The Arc has cultivated several national partnerships to bring the issue of paid family and medical leave further into the public spotlight and advocate on the federal level. Learn more about our work.

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 600 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

The Importance of Self-Advocacy: From China to The Arc’s National Convention

By Holly Miller

Disability Advocacy Scholar, The Arc

Holly with walkaround Julia, Muppet from Sesame Street

My passion for advocacy has grown stronger over the years and is taking shape as I learn more about the importance of fighting for your rights, no matter who you are.

I am a postgraduate student of political theory in Shanghai, China, pursuing a Master of Law degree. I am currently working on my thesis titled “Autistic Voices in China— A Critical Disability Research.”

My life experience as an autistic woman, growing up in Michigan, has guided my academic studies and understanding of the importance of self-advocacy for me and other people with intellectual and developmental disabilities (I/DD).

In October 2019, I flew from Shanghai to the U.S. for The Arc’s National Convention in Washington, D.C. The Arc awarded me a Disability Advocacy scholarship to attend the annual convention for the first time. It was an amazing opportunity to connect with other self-advocates and to continue to learn and grow.                                              

We were encouraged to attend sessions at the convention to learn about issues affecting people with disabilities and their families. My favorite session was “Supporting People with Intellectual and Developmental Disabilities (I/DD) to Make Their Own Decisions.” I learned how to advocate for myself in new ways and how other people with I/DD can learn to support themselves. I think it is vital that we all have the opportunity to live independently. I attended this session to learn more for my future career in disability advocacy.

Holly, left with Julia Bascom, Autistic Self Advocacy Network Executive Director

I also enjoyed an interactive session called “National Council of Self-Advocates: Everyone Votes!” I already know a lot about voting but during this session I got the chance to learn even more about why voting and raising issues impacting the disability community is so important. This session was especially powerful for those in the room who had never voted. As American citizens, we all have the right to vote!

The Diversity Breakfast was another highlight of the convention. It was interesting to hear concerns from other self-advocates and how their advocacy has made a difference. At the breakfast, I met others who are as interested in advocacy as I am, which put me at ease at my first convention.

I became interested in self-advocacy after giving several presentations in college about my life growing up autistic. I hope to one day help others with I/DD fight for their right to make their own decisions and live in the community with appropriate supports and services.

I have enjoyed advocating alongside The Arc – all the way from China – and learning from the organization how to be the best advocate I can be. The Arc listens to me. I am looking forward to working together to advocate for all people with I/DD and their families.