The United States Capitol Building

Congress’s End-of-Year Legislation Includes Disability Priorities and Leaves Unfinished Business

/in , , , /by Pam Katz

As Congress wrapped its work for the year, disability advocates pushed for progress on a variety of priorities. Congress has now passed a package that includes some important victories but leaves others out.

One of the biggest wins is an extension of the Money Follows the Person program, which helps people transition out of institutions and nursing homes, and back to their communities.

The Money Follows the Person (MFP) program provides grants to states to transition Medicaid participants from institutions into the community. MFP has moved more than 107,000 seniors and individuals with disabilities out of these institutions and has helped 43 states and the District of Columbia improve access to home and community-based services (HCBS). Medicaid requires states to provide care in nursing homes, but HCBS is optional. The MFP program is then critical because it incentivizes investment in HCBS by providing federal funding for transitional services for individuals who wish to leave a nursing home or other institution. Congress has now extended it through 2027.

“This program makes it possible for more people with disabilities to change their lives, on their own terms. And it proves what people with disabilities and their families know – the opportunities for a life in the community, with the services to make it happen, are game changers. We will continue to relentlessly advocate for major investments in home and community-based services,” said Peter Berns, CEO, The Arc.

Other victories in the bill include:

  • Creating a path for a ban on the use of electric shock devices for behavior modification on people with intellectual and developmental disabilities (IDD). The brutal treatment is widely recognized as cruel, harmful, and ineffective. Yet it’s still used at one institution in Massachusetts.
  • Extending the requirement that states apply Medicaid’s spousal impoverishment protections to HCBS through 2027. A spouse shouldn’t have to live in poverty for their partner to receive services in the community.
  • Expanding ABLE account eligibility. ABLE accounts are tax-advantaged savings accounts for individuals with disabilities. This legislation increases the age of disability onset to access an ABLE account from prior to age 26 to age 46, starting in 2026.

Congress’s action or inaction on certain issues creates unfinished business for The Arc and our advocates to rally around in 2023, including:

  • No action to increase to SSI’s asset limits. Right now, people who get SSI can only have $2,000 in assets, and married couples can only have $3,000.
  • Congress is ending important eligibility and funding improvements tied to the COVID-19 public health emergency. This means states may begin to remove ineligible people from their program starting April 1.

“It’s very disappointing that Congress didn’t take the opportunity to help lift people with disabilities out of poverty, by simply bringing the SSI asset limit out of the 1980s into this century. We will continue to push for this change in the New Year,” said Berns.

Comcast logo

Powerful Partnership Leads to Change: Comcast NBCUniversal and The Arc Continue to Make a Difference Through Digital Skills Training

/in , /by Pam Katz

For people with intellectual and developmental disabilities (IDD), digital access and skills are a critical component of gaining independence. In 2022, The Arc and Comcast NBCUniversal once again teamed up to open digital doors for and with people with IDD.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community, and through this partnership, since 2017, more than 2,579 clients have received basic digital skills training at 19 sites around the country.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Expanding Self-Determination and Independence

Cathy and Ross, The Arc of Greater Indianapolis (Indiana)

Cathy and Ross each live very independent lives in their community, with their chapter supporting their day-to-day activities and routines. Both deeply wanted more time in their respective homes to unwind and safely manage their own needs without staff hovering around them in case they were needed. As chapter staff member Rita Davis noted, “After you’ve been around others all day, as much as you may like them, there are times when you just want to be alone!” However, both of their families were concerned about their safety in the home with no support staff nearby. Each was coached in how to use tools like the Ring Camera and messaging on their phones to monitor their own environments and reassure/check in with family or chapter staff if they needed assistance. Now, Ross is enjoying greater independence and exploring how to self-administer his own medications, and Cathy can decompress by herself home. Their families are thrilled—and relieved—to have a system in place that will keep them safe while supporting them to live more independently and manage their daily lives.

Courtney, The Arc Southern Maryland

Courtney lives with her mother and has been dependent on her for all her scheduling and transportation needs. Unfortunately, her mother was in a car accident which left them without a vehicle. Courtney has many regularly scheduled appointments that she must get to each week. Through her coaching, she was provided with and taught how to use a smartphone that she could use to reach out to others in her network for rides, find and map out public transportation, and schedule and confirm some of her own appointments with her cardiologist, other doctors, and therapists. Her mother has been able to shift some responsibility to Courtney, and an added benefit of her new phone is the ability to stay better connected to friends and family.

India, The Arc Southern Maryland

India lives with her parents and is nonspeaking, so she has historically relied on various vocalizations and pointing to communicate her needs and desires with her caregivers. Her coaching focused on the adoption of new alternative and augmentative communication (AAC) tools to broaden her options for expressing herself. Currently, India is exploring how to use several AAC apps and for the first time ever, she can communicate using words through Touch Chat, which uses a digital word board with photos. This will impact every single aspect of India’s life and give her the tools to advocate for her needs, build relationships, and direct her own life.

Her father John said, “We can better understand her, and we’ll feel more confident she’ll be ok when she’s not with us.”

Professional Development and Furthering Employment Skills

Rochelle, The Arc of Greater Indianapolis (Indiana)

Rochelle’s initial tech coaching sessions focused on completing online employment applications. To her delight, she landed a job at Arby’s consisting of 20 hours a week cleaning the lobby and dining areas. While she was glad to have the job, she was quickly becoming a little bored with it but did not have the computer skills needed to advance in her role. Her coaching sessions continued as staff worked to expand her digital skillset. As a result, after just two months on the job, she was promoted to the drive-through window to take customer orders on the computer. She also uses their computer system to clock in and out, retrieve pay stubs, and complete mandatory trainings. Where Rochelle was initially nervous about using a computer, she now approaches new digital challenges with an improved sense of optimism and confidence and can continue to progress in her career.

Sidney, New Star Services (Illinois)

Sidney wanted to learn how to program his watch to remind him when it was time to go on breaks and lunch and when to clock out for the day and head home, so that he did not have to rely on coworkers or his job coach to remind him. He has learned how to stop, start, and reset timers on his watch and as a result has become far more independent with his time management on the job. Not having to rely on his coworkers or supervisor to keep him on schedule has been a great source of pride for Sidney and has enabled him to turn his attention to learning new employment-based skills.

Bobby, The Arc of Weld County (Colorado)

Bobby has had no access to technology besides his phone. He only recently restarted attending a day program once per week, and his only social interactions were at work. His coaching focused on not only building skills to explore hobbies like music and coding, but also how to expand his network and build relationships he can maintain outside of in-person activities. He learned about internet safety, using various apps, and using Gmail and Zoom. His newfound digital literacy has opened the door for him to take on leadership roles as well. He is now being considered for a board position with The Arc of Weld County, of which virtual access and reviewing materials via email is required. His wife has also received coaching for her needs and goals and is the longest current employee at the agency!

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation and President of the Comcast NBCUniversal Foundation. “Partnerships like the one we’re proud to share with The Arc – and as a result, the many lives we’re able to help impact – are at the heart of what drives us each and every day at Comcast. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive effort to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach 50 million people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

The Arc logo

Lack of Medicaid Portability Restricts Life Choices for Zoe and Other Americans With Disabilities

/in /by The Arc

By Zoe in Colorado

I was born with spinal muscular atrophy, a developmental neuromuscular disease that affects every muscle in my body. My entire life, I’ve relied on someone else to do even the most basic care for me. At some point in my childhood, I was placed on a Medicaid waiver in Colorado. It allowed me access to specialized care, like home health, which wasn’t covered by my parents’ primary insurance.

When I was in the third grade, we moved states. I remember my mom spending time on the phone and filling out applications that took almost a year to complete to get me started on the new state’s Medicaid program. When we moved back to Colorado, I watched her do the same thing again, over months, until I was finally placed on a waiver again.

At the time, I didn’t realize what all of that meant. It wasn’t until I was a junior in high school, visiting colleges around the country and being recruited into top-tier honors programs, that I realized I was facing an even bigger barrier than my disability itself. Medicaid, which I now rely on daily, is nontransferable between states. It is not portable. In addition, not all states have the same programs and services to allow an individual to live independently.

Because I need 24-hour assistance that rivals the care level in an assisted living facility, home health care is necessary for me to live independently within my community. I knew that I wanted to go to college, and I knew that I wanted to live in a dorm. But as my acceptance letters began to roll in my senior year of high school, it became apparent that, unlike my peers, my choices were going to be limited—unless, of course, I wanted my mom to move into my dorm and attend classes with me. Though I love her, I knew that was not going to work.

Reluctantly, after research, calls, and dead ends, I turned down prestigious offers, including the rigorous University of California in Los Angeles. I was both ecstatic and heartbroken, knowing I was accepted in a pool of 111,000 applicants at a beautiful school, but knowing the challenges I would face if I relocated to California.

Though it became a different journey, I opted to stay in Colorado, where I am now a fourth-year honors student at the University of Denver. I live on campus independently with a team of caregivers paid through a Medicaid waiver.

Although my story is a happy one for now, the struggle remains the same. While my friends jumped around the country over the summers taking internships in their fields of study, I remained “stuck” in Colorado because I simply can’t pack up my medical equipment and caregivers and hop over to a different state. This reality remains as I look at graduate programs, forcing me to seriously consider online programs since my area of study isn’t offered locally. If I do move, for either school or a career opportunity, the consequences of a gap in Medicaid coverage are too great to risk.

I imagine not having health care coverage for months on end while I try to navigate a new state system on top of moving to a new city and state. My $26,000 medicine? My $56,000 power wheelchair? My monthly allotment of $20,000 to pay caregivers for 24-hour care? POOF! Nothing would be covered. My ventilator rental that I rely on to breathe at night? I’m not trying to be dramatic, but the truth is, I would slowly die without it. Without the drug that is keeping me stable, my body would further deteriorate.

I am privileged to have parents with the financial means to sell their home and transfer their jobs if necessary. But without those natural supports, I would never be able to move. Ever. Because I can’t simply show up and have caregivers and medical providers and Medicaid and a pharmacy and a durable medical equipment company and… and… and…

How to maintain independence is something not every 21-year-old has to think of, but it’s something that I will always have to consider when making life decisions. Until Medicaid offers a portability option, disabled Americans like me will always be restricted in their life choices in ways that our able-bodied peers never will be.

The Arc logo

Enough Is Enough. Our Statement on the Club Q Tragedy.

/in , /by Pam Katz

As we grieve yet another mass shooting tragedy in the U.S., thoughts and prayers are not enough. We are heartbroken by the continued harassment, hateful legislation, and exclusion of LGBTQ+ individuals that led to the shooting at Club Q in Colorado Springs, Colorado on Sunday.

Enough is enough. Everyone deserves the same respect, opportunities, and safety. Diverse perspectives, identities, and cultures are something to be valued, not feared and shunned, and are an essential part of the fabric of America. The Arc is no stranger to helping people navigate dehumanizing barriers to simply live openly in their communities, and ALL Americans deserve better. We stand in solidarity with the victims, their families, all LGTBQ+ individuals, and anyone who has experienced gun violence.

As each subsequent shooting makes clear, such as that which occurred two days later at a Walmart in Chesapeake, Virginia, our elected leaders at the national, state, and local levels must do even more to solve the ongoing problem of gun violence that plagues our nation and often targets vulnerable, marginalized communities, including people with disabilities.

 

The Arc logo

National Disability Rights Groups File Amicus in Perez v. Sturgis

/in , , , /by The Arc

This week, The Arc of the United States joined eleven national disability rights organizations in filing an amicus brief in the U.S. Supreme Court. The amici are asking the U.S. Supreme Court to protect students with disabilities and ensure that families of these students are able to pursue the full range of civil rights remedies directly in federal court. The case, Perez v. Sturgis Public Schools, is scheduled to be heard on January 18, 2023.

“Students with disabilities already face inordinate obstacles in getting the education they need to build their future,” said Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel at The Arc. “From inadequate accommodations and low expectations to restraint, seclusion and poor support, parents and children are too often forced to become experts in self-advocacy and the law in order to obtain services and supports they are entitled to. If the lower court decision is allowed to stand, it will cause further harm to students with disabilities who already experience segregation and discrimination in school and will burden parents by forcing them to jump through futile and unnecessary hoops in order to pursue non-IDEA civil rights claims in federal court.”

In Perez v. Sturgis Public Schools, the plaintiff Miguel Perez, a deaf individual, was denied a sign language interpreter for 12 years while attending Sturgis Public Schools, which ultimately impacted his ability to read, write, and graduate. The Perez family filed a due process complaint alleging violations of the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA) and the parties settled the IDEA claims. The ADA claims were dismissed since these claims cannot be heard in administrative proceedings, so the family brought the ADA claims in federal court and sought compensatory damages. The lower court held that Perez gave up his right to sue under the ADA in federal court when he settled the IDEA claims because settlement does not constitute exhaustion of administrative remedies. Yet both claims are vital in his fight against years of discrimination and neglect – the IDEA claim addressed the school’s failure to provide the education and services he needed to learn, and the ADA claim addresses his unequal access to education and compensatory damages for his emotional distress resulting from that discrimination. If the U.S. Supreme Court does not rule in favor of the plaintiff, students with disabilities and their families will have to turn down full IDEA settlements, forgoing their ability to immediately receive a ‘free appropriate public education,’ in order to preserve their distinct non-IDEA claims.

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About The Arc: 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 600 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.

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.

Media Contact: Jackie Dilworth, Director of Communications, dilworth@thearc.org

A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

It’s Flu Season: Are You Ready?

/in , /by Pam Katz

A young child gets a band aid after a vaccine. She is smiling. This year we are facing a triple threat for flu season: the flu, Covid-19, and Respiratory Syncytial Virus Infection (RSV). RSV is a viral respiratory infection that usually causes cold-like symptoms. Hospitals are currently seeing an alarming increase in pediatric cases of RSV and some are becoming overwhelmed by the surge.

According to research published by the American Association of Pediatrics and the National Institute of Health, babies and children with Down syndrome are at a higher risk of severe complications and even death from RSV. Much like any other respiratory disease, living in a residential care facility or attending day programs can put people with intellectual and developmental disabilities (IDD) at increased risk of exposure. Vaccines for RSV are still in development, but there are important steps you can take right now to protect yourself, your loved ones, and your community during the coming wave of infections.

Getting immunized against this year’s flu strain and staying up-to-date on Covid-19 booster shots are critical actions to stay safe. The CDC has stated that children with intellectual disabilities, cerebral palsy, and other neurologic disorders are at greater risk of severe illness and death from both Covid-19 and the flu. Fighting any one of these viruses can be tough, so it is important to take this step to reduce the likelihood of severe disease or concurrent infections. As the days get shorter and temperatures get lower, remember to make time to get vaccinated. Consult with your doctor if you have any questions.

You can find free flu and Covid-19 vaccines near you at Vaccines.gov.

The Arc logo

The Arc of the US Hires Its First Senior Executive Officer of Development

/in /by The Arc

A man standing outside in front of tall bushes with pink flowers. He has short brown hair and is wearing a navy suit and tieThe Arc of the United States has hired its first-ever Senior Executive Officer of Development: Karim Merchant. Karim will lead a team to develop, implement, and manage fundraising strategies that support The Arc’s longstanding commitment to advocate for and serve people with IDD. He will create and implement a comprehensive growth strategy and fundraising plan to cultivate private and public philanthropic support advancing The Arc’s vision for people with IDD to be valued members of their community who can achieve their full potential and a future that is secure. As The Arc approaches its 75th anniversary, Karim will work to build a stronger base of financial support for the national organization, including relaunching The Arc US Foundation, to assure that its advocacy and services will continue for decades to come and give families caring for a person with IDD peace of mind.

Karim comes to The Arc most recently from the Cancer Support Community (CSC), the largest professionally-led nonprofit network of cancer support worldwide, where he led a dynamic fundraising team focused on growing major and planned gifts, corporate partnerships, and foundation grants. Prior to that, at the Aga Khan Foundation USA, Karim led a fundraising team and hundreds of volunteers across the country to raise nearly $14 million annually to improve the quality of life of communities in Asia and Africa.

Karim is a member of the Board of Trustees of Excelsior University and chairs its Institutional Advancement Committee. He recently represented CSC alongside DC grant makers as a volunteer reviewer in the first grant round of DC’s $95 million health equity fund. Karim has enjoyed building experience in a variety of donor-centered fundraising strategies including major and mid-level giving, planned giving, annual fund, board engagement, corporate sponsorships and partnerships, grant writing, events, volunteer leadership, recurring giving, digital campaigns, point-of-sale fundraising, and direct mail. Before he was a fundraiser, Karim practiced corporate finance law, most recently at the Chicago office of Baker and McKenzie. Karim holds a J.D. from The University of Virginia School of Law and a B.A. in Economics and Spanish from Vanderbilt University.

A man in a pink button down stands in front of the ocean, smiling with his eyes closed. He is wearing glasses.

Meet Kevin: “Yes, I can do it!”

/in /by Pam Katz

What do you want people to know about Down syndrome?

I want people to know that just because I have Down syndrome doesn’t mean I can’t live a fun and exciting life. I have a great life because of my Down syndrome. I want people to know that people like me with Down syndrome are fun, we are loving, we love to hug and we can own our own businesses.

Be nice to me and respect me because I am human, not because I have Down syndrome. I just want to be treated like everyone else and given the same chance to do things. Yes, I can do it. I just need a little more time.

What is a time you were upset or frustrated by how someone treated you?

I got frustrated one time when my sister Kate took me grocery shopping. I wanted to shop by myself and she didn’t want to let me. I got upset and frustrated. She then let me shop by myself and I did a great job. I was able to check out by myself too!

What is a time someone believed in you?

I was asked to be a guest bartender two different times. Once at El Buffalo and once at Raw and Refined. My nephew, Tyler, and the bar’s owners believed I would do a good job. I was so happy they believed in me. It made me so happy to see all my friends come out and support me too. I did a great job being a guest bartender and wouldn’t have known I could do it if they didn’t believe in me.

What are you most proud of?

I am most proud of my family. I love all my 5 sisters and 1 brother. I love that we all get along. I am very proud that I graduated from North County High School in 2002 and from Gigi’s prep in 2021. I am proud that I can work at my three jobs and make my own money.

I am proud of my life.

What does a good life look like to you?

I am happy with my life. A good life looks like my life now. I want to spend lots of time with my girlfriend Emma. I want to keep going on family vacations with my 5 sisters and 1 brother. I want to always stay living in my house. I want one day for all my sis and brother to live with me.

I hope one day to get married and have my own family. I would love to have my own business, work out more and get healthy.

Roll of red, white, and blue "I voted" stickers on a white table

You Have the Power: Go Vote!

/in , , /by The Arc

It’s almost time to cast your vote in the midterm election. Are you ready?

According to the Centers for Disease Control and Prevention, 1 in 4 adults have a disability. Any cohort of this magnitude carries significant political power, especially during a midterm election year such as 2022.

People with disabilities and their family members recognize that their votes help elect the officials who will run the government, make laws, decide where government money gets spent, and much more. All these decisions have a significant impact on the lives of people with disabilities, their families, and the workforce that supports them.

The Center for American Progress found that nearly 62% of voters with disabilities cast a ballot in the November 2020 election, compared to just 56% in 2016. This increase is in spite of the fact that people with disabilities continue to face barriers to casting their ballot, such as complex mail-in voting procedures, inaccessible voting locations, inexperienced polling workers, guardianship laws, transportation barriers, and more.

This fall, the disability community and their supporters have another opportunity to make their voices heard through their vote. In this current midterm election cycle, all 435 seats in the House of Representatives and 35 of the 100 seats in the Senate are on the ballot.  Additionally, eligible voters in 36 states will vote to install new governors. That’s a lot of opportunity for our community to shape the future of our country by simply going to the polls.

To help you navigate this election season, The Arc has created several resources and put together essential information about voting. At thearc.org/vote you can find the following materials in plain language in both English and Spanish:

  • The Arc’s Disability Voting Guide
  • The Election & You: Thinking About Disability
  • Sample Questions for Candidates
LEARN MORE

You can also check out The Arc’s Civic Action Center to find your state’s upcoming election information, your closest polling location, and verify if you are registered to vote (make sure you know your states deadline!).

Let’s keep the momentum going and show our civic power again this election season. Take the first step and pledge to vote today!

The Arc logo

Blazing a Path Forward: The Arc’s New Access, Equity, and Inclusion Plan

/in /by The Arc

The Arc is on a journey to become a more diverse organization and movement that is fully accessible, equitable, and inclusive. Since embarking on this journey, we have made vital steps, committing to improving our staff’s racial and ethnic diversity, strengthening outreach to diverse communities, creating a dynamic Access, Equity, and Inclusion (AEI) Team, and investing in new partnerships to advance AEI.

As we celebrate this progress, we also re-dedicate ourselves to our commitment to equity and to answering the key questions that drive our work:

  • What does true inclusion and equity look like for all people with intellectual and developmental disabilities?
  • How do we ensure we are centering the voices and experiences of people living at society’s margins?

To help us meet these questions, we have developed a new Strategic Action Plan for Advancing Access, Equity, and Inclusion. This plan is the result of a multi-year process, which involved gathering the opinions and experiences of our community members, chapters, and people and groups from diverse and marginalized communities.

Our plan is available in English and Spanish, with more extended and summary versions also available.

This strategic action plan will guide our path forward to meet changes and challenges for years to come. It will keep us accountable and steadfast on our journey to becoming a more vital, accessible, equitable, and inclusive organization. It will help us grow in our leadership in AEI, ensure The Arc becomes more representative of diverse and marginalized communities, and guide us to promote social justice and follow the lead of marginalized groups, communities, and activists.

This plan supports our Strategic Framework for the Future of The Arc. We also hope this plan will guide our 600 chapters nationwide on their AEI journey.

Now more than ever, The Arc must do its part to strategically build the disability rights movement into a more diverse force for change. We proudly present our Strategic Action Plan for Advancing Access, Equity, and Inclusion as a critical guide on this journey.