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In Final Days of Trump Administration and In Middle of Pandemic, Federal Officials Approve Cuts to Medicaid in Tennessee

Washington, D.C. – As the Trump Administration wraps up its tenure, officials at the Centers for Medicare and Medicaid Services (CMS) finalized an agreement with the state of Tennessee that will cut funding for the Medicaid program in that state, known as TennCare.

“This decision will harm people with disabilities, low-income families, and older adults in Tennessee, and sets a dangerous precedent across the country.

“It will cut federal money coming in, and fundamentally change the Medicaid program and Federal funding guarantee to the detriment of people with intellectual and developmental disabilities. There will be less federal oversight and accountability for beneficiary protections, and its implementation will have devastating consequences on access to prescription drugs. And to take this action while a dangerous pandemic rages across the country – stretching our health care system, impacting state resources, and harming the economy – is simply unconscionable.

“We are very skeptical about the state’s claim that some of the savings in this restructuring scheme might be used to eliminate the waiting list for services for people with intellectual and developmental disabilities. Right now in Tennessee, there are already challenges with providers because the low reimbursement rates for many services make it difficult to hire and retain qualified workers. Elimination of the waiting list is only relevant if people are getting what they need, when they need it, and cutting funding won’t help. The concept that less money will lead to more innovation and more people getting services is a fallacy.

“The incoming Administration must address the inequities that this block grant will create and ensure that this harmful policy is not replicated in other states.. People with disabilities should not have to endure these cuts now in this public health crisis, or in the future,” said Peter Berns, CEO, 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 over 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.

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Important Step for Community Living for People with Disabilities: Congress Makes Overdue Investment in Money Follows the Person Program

Last night, Congress passed three years of funding for the Money Follows the Person program. This program provides federal dollars to move people with disabilities out of large congregate settings like institutions and nursing homes, and back into their homes and communities. This is an important step in our decades-long fight to bring people with intellectual and developmental disabilities (IDD) out of institutions to live meaningful, independent lives in the community. 

This news comes after eight short-term reauthorizations, one as short as 7 days, that almost made the program collapse because states couldn’t count on the federal funds and were shutting down their programs, despite the desperate need for the funding due to the pandemic. The last round of funding for the effective program was set to expire on December 20, so it’s future was uncertain in the waning days of the Congressional session. (Citation: Tesla Aktie Dividende)

“Without this investment, more people would continue to be stuck in institutions and nursing homes – and the COVID-19 pandemic has shown how dangerous these settings can be. An enormous barrier for people with disabilities is access to the supports and services necessary to make a life in the community, so Congress did the right thing by investing in this program. It’s a victory, but one harder to celebrate given the fact that once again, Congress absolutely failed to address the dire needs of people with disabilities, their families, and service providers in their latest COVID-19 relief deal,” said Peter Berns, CEO, The Arc.

The Money Follows the Person (MFP) program provides states with 100% federal Medicaid funding for one year to transition people out of institutions and nursing homes, and back to their communities. MFP has moved more than 105,000 seniors and individuals with disabilities out of these institutions, and has helped 44 states 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.

The MFP program supports people to move back home by providing necessary community-based supports like staff to support individuals in their homes, home modifications, and HCBS. The program is also cost-saving for states – longitudinal studies of the program show  20% savings per beneficiary per month for state Medicaid programs and most importantly, better quality of life outcomes for people receiving services in the community instead of institutional care.

“This program will make it possible for more people with disabilities to change their lives, on their own terms. We’ve got a lot of work to do in the new year to continue to help people with disabilities to live in safer settings with the right services for each individual, and the necessary resources for the dedicated staff supporting them. Families are struggling too, and The Arc will continue to lead this fight for equality and justice during and after this public health crisis,” said Berns.

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Shut Out Again: COVID-19 Relief Package Again Excludes Needs of People With Disabilities, Families, Service Providers

After months of hardship and danger from the COVID-19 pandemic, and relentless advocacy by The Arc and advocates across the country, last night Congress passed a COVID-19 relief package without critical funding for people with disabilities to access the services and supports necessary for a life in the community.

As COVID-19 continues to spread nationwide, people with intellectual and developmental disabilities are struggling to access the services they need to continue to live in the community, and their families struggle with balancing work and caregiving responsibilities. Congress should have allocated desperately needed funds to support home and community-based services but they fell short.  They also failed to provide funding for personal protective equipment (PPE) and resources for the workforce that has supported people with disabilities tirelessly throughout this pandemic.

Congress did authorize a second round of smaller stimulus payments, but once again left out many people with disabilities – those who are defined by the IRS to be “adult dependents.” This group was inexplicably cast aside despite bipartisan support for including them.

Congress extended tax credits available for business to cover paid leave, but eliminated rules about when business must provide leave and did not extend the tax credits to cover all caregivers as the pandemic continues. Congress also failed to provide a solution to a COVID-related overpayment issue with Social Security benefits. The needs of people with disabilities, their families, and the workforce that supports them were excluded to honor an arbitrary bottom line.

“It’s unconscionable that Congress ignored the dire needs of people with disabilities, their support staff, and families as this pandemic rages across the country. For months, our leaders have known the consequences of their inaction. People with disabilities are getting infected at higher rates. Support staff are putting their lives on the line day and day out with the protection they need. And families are struggling with it all. Yet in the waning days of 2020, they have shut us out in the cold in COVID-19 relief legislation,” said Peter Berns, CEO, The Arc.

Home and community-based services, or HCBS, make life in the community possible for millions of people with disabilities who often need help with things like eating, dressing, personal hygiene, and managing health care or finances. As COVID-19 spread in congregate settings out of the community, like nursing homes and institutions, HCBS became even more important for health, safety, and independence. Without this critical federal emergency funding, as state budgets continue to take hits due to the pandemic, the HCBS systems will be hit hard.

Through The Arc, almost 150,000 calls and emails have flooded Congress in recent months to demand action for funding for these services, along with the PPE needed by staff to safely deliver these services to people with disabilities. Chapters of The Arc across the country have been scrambling throughout the pandemic to access PPE and other medical supplies. They are in need of resources to cover these costs as well as the funding to pay their direct support professionals fairly for the vital work they do.

“This is not hyperbole – this is life and death for people with disabilities and their support systems. Before, during, and someday after the pandemic, a life in the community is vital for people with disabilities. Congress turned its back on desperately needed funds to support these services, protect the staff doing the work, and pay them for the risks they are taking in this public health crisis,” said Berns.

Click Here for Inclusion: Staying Connected During COVID-19

For people with intellectual and developmental disabilities (IDD), a fully integrated life in the community often depends on not only people-powered supports like direct support professionals and job coaches, but on the technology to facilitate skill building, social connection, and much more.

As the COVID-19 pandemic swept across the world and shut down entire communities, people with disabilities saw many of those connections and daily routines come screeching to a halt.

Seeing the desperate need for solutions, Comcast NBCUniversal stepped up to quickly provide support where it was needed most. Comcast generously provided grants with flexibility so chapters of The Arc could make the most impact in their fight to safely prevent isolation and support overburdened families. This allowed our chapters to explore new and innovative ways to engage families in the community, at times reaching more people than in the past.

In Larimer County, Colorado, Sam and his mother found themselves stuck at home together and sharing her work laptop. Sam was able to use the laptop for high school classes and his social life—but because his mom also needed it for work, his usage was limited. On top of that, he was not able to download everything he needed for school. The other devices in the house were either no longer able to connect to the internet, out of storage, or not exclusively his. The lack of access prevented him from participating in Zoom calls with his fellow high school classmates and put him behind not only socially but academically. Sam and his mom felt frustrated and left behind, as so many others have during this pandemic.

Through the support of Comcast NBCUniversal, The Arc of Larimer County was able to help Sam and his mother by providing Sam his own new laptop to use however and whenever he wanted. He was finally able to reconnect with his friends virtually and have a sense of independence with having something of his own, giving him something positive as he toughs out the continued isolation wrought by COVID-19.

And Sam’s not the only one thrilled with his new computer! His mom says, “This will be a great stress relief, an answer to prayers. We have been actively looking and trying to make do with my work computer and the one we have to return. Thank you so much for helping our family in this tough time.”          

On the East Coast in Philadelphia, Eloisa Maglaya found herself facing the same challenges. Prior to COVID-19, she was very active in the community and enjoyed attending a variety of events. But once she was home with few options to safely socialize and stay active, she found herself feeling isolated and frustrated. This all changed with the tablet given to her by The Arc of Philadelphia. With her new tablet, she is able to:

  • Maintain a daily routine
  • Stream virtual Zumba classes (her favorite pre-pandemic activity) and stay active
  • Watch movies in her native Tagalog Philippine language
  • Learn how to navigate app usage directions, stream her favorite videos, and better use the device features with the help of her direct support professional
  • Stay updated on COVID-19 safety procedures 

The positive effects of Eloisa’s tablet have been immeasurable. Her family and The Arc’s staff have reported seeing her more joyous and happier!

Comcast NBCUniversal’s support extends far beyond chapter funding. They are leveraging their media platforms to raise public awareness of the impacts of the pandemic on people with IDD—including through multiple segments on the TODAY Show, expanding internet access to low-income families and school districts through Internet Essentials, and advancing accessibility with technology like the voice-activated remote control, X1 eye control, and a dedicated service center for customers with disabilities.

In our hyper-connected world, technology was already what kept us connected from day to day. But as we limit physical contact to stay safe, digital access has become more vital than ever. For people with IDD—who have had to fight for decades for the chance to be included in their communities—access to the digital world ensures that progress is not lost and they can remain connected and engaged with the people and activities they love most.

These grants and more are made possible by:

Comcast logo featuring rainbow icon above the text

a group of people of varying ages walk on a field with sunset in the background. They all wear blue shirts that say "volunteer".

2020 MLK Grantees Continue the Fight Against Hunger

Since 2015, The Arc has been the proud recipient of a grant from the Corporation for National and Community Service (CNCS), the federal agency that funds the national Martin Luther King, Jr. Day of Service activities. Under this grant, chapters of The Arc and other organizations executed projects all across the U.S, uniting volunteers with and without disabilities in service to their communities.

With the pandemic plunging millions into hunger, the following organizations followed in the footsteps of their predecessors and designed initiatives that sought to reduce food insecurity in their individual neighborhoods:  

The Arc of Midland (MI); Ridge Area Arc (FL); The Arc Nature Coast (FL); The Arc of the Glades (FL); The Arc of South Carolina; UCP Seguin (IL); The Arc of Oklahoma (formerly TARC); Choices for Community Living, Inc. (DE); The Arc of Southwest Colorado; The Arc Lane County (OR); The Arc of Rockland (NY); AHRC New York City; Holly Ridge Center (WA); The Arc Jacksonville (FL); Youth Impact (TX); The Nashville Food Project (TN); The Arc Williamson County (TN); The Arc Central Virginia; Boys & Girls Club Blue Ridge (VA); Stone Soup Cafe/All Souls Church (MA); Star, Inc. (CT); Arc of Calhoun & Cleburne Counties (AL); Cass Community Social Services (MI), and last but certainly not least, Arc of Quad Cities Area (IL)

These grantees worked tirelessly to deliver food assistance to their neighbors experiencing food insecurity, many for the first time. With the pandemic in full swing by March, organizations quickly modified their initiatives to adhere to social distancing guidelines.   Projects ranged in size and scope, and often reflected the culture of their community. Volunteers engaged in a variety of service opportunities, including:

  • Organizing food drives to collect food from individuals, businesses, and restaurants
  • Working in gardens or with farmers to gather, package, and distribute fresh fruits and vegetables to local food banks
  • Strengthening the capacity of local Meals on Wheels and Elderly Nutrition programs to serve home-bound seniors
  • Partnering with soup kitchens and elementary schools to serve lunch and dinner to community residents experiencing food insecurity

At the end of the grant period, 3,500 volunteers with and without disabilities had served 76,000 meals to 30,000 of their neighbors, contributing 27,000 hours and $753,000 in value to their respective organizations.

At a moment when the need for hunger assistance continues to climb in America, every grantee rose to the challenge. More importantly, while these dedicated organizations were delivering food aid to their neighbors, they were simultaneously demonstrating a timeless truth: the tremendous contribution volunteers with disabilities bring to their local communities. For all their time and efforts, The Arc will be forever grateful.

With COVID-19 wreaking havoc so many lives, volunteering in your local community is more important than ever. The Arc is once again partnering with CNCS to offer $5,000, $10,000, and $15,000 grants to chapters of The Arc and other local nonprofit organizations to develop September 11th Day of Service and Remembrance projects. Learn more about this exciting opportunity and apply by December 4. We would love to have your organization join us!

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The Workplace in 2020: How Employers Can Support Jobseekers With Disabilities

This is the second of a two-part series that The Arc@Work will publish this month to speak on the new and emerging challenges faced by workers with IDD and how employers, disability services agencies, and individuals with intellectual and developmental disabilities (IDD) can work together on creating solutions that create inclusion and workplace equity.

In the first part of this blog series, we discussed how hard the disability labor force has been hit by the pandemic and the various barriers that now face these individuals as they look for work. At the same time, the fact that many companies have had to either temporarily or permanently cut staff as a result of COVID-19, which means that employers will be hiring as the economy begins its slow climb back up to its pre-pandemic levels. Now is the perfect time for employers to assess where they stand in their disability inclusive culture and recruiting strategies. Below is a list of considerations and strategies that employers can consider to mainstream disability-inclusion in rebuilding their staff.

Make your online job application accessible. One of the first barriers that many job candidates encounter in the process is an inaccessible online job application process. Web accessibility is a growing field and there are now several resources for web developers to use to learn how to develop accessible job descriptions and webpages and test their accessibility after the fact. Accessible job descriptions are screen reader compatible, are in plain language and use the The World Wide Web Consortium’s Web Content Accessibility Guidelines 2.1.

Cut out limiting language from your job description. Are all the stated job functions essential to performing the job?Have you ever put a physical requirement on a job, like being “able to lift 40 lbs repeatedly” or “needs to be able to stand for long periods of time”, but neither were actual requirements for the job? While these functions are sometimes included in boilerplate or standard job description language, these are also very real barriers for some applicants with disabilities. You must take a moment to identify and separate out the essential functions of the job from the non-essential functions of the job prior to beginning your recruiting efforts. You will then better be able to convey which parts of the job are actual versus desired skills and capabilities. Your business may be missing out on top talent by using standardized job description language that doesn’t actually apply to the position in question. Make sure that your job descriptions do not use limiting language or include physical “requirements” that are not appropriate for the job.

In the same vein, it is also important not to list having a valid driver’s license as a job requirement if driving is not an essential part of the job. Some individuals with disabilities are either unable to drive or do not have a valid driver’s license and either take public transportation to work or are driven by a family member or caregiver. It is important not to limit individuals by listing this as a requirement unless driving is an absolutely necessary part of the job.

Your job description should also state that individuals with disabilities are encouraged to apply and reasonable accommodations will be provided. This will not only be reassuring for prospective applicants with disabilities, but using these terms in your job description will also help your job application show up among the top results in a search on popular job boards like Indeed or Idealist.  

Ensure that your interview process is equitable and accessible to people of all abilities and communication styles. Many recruiters and HR professionals subscribe to a standardized approach to recruiting and interviewing job candidates for open positions. For hourly positions, this may take the form of an initial phone screen interview followed by an in-person or virtual interview. The phone interview is where many people who communicate differently, have a processing delay or a cognitive disability, or are deaf or hard of hearing may encounter barriers. Interviewers who take dozens of phone screening calls a day may get the impression that a person who speaks or communicates differently may be doing so out of disinterest in the job. This, in turn, can cost a candidate with a disability a fair shot at employment. One of the small ways to accommodate job candidates with disabilities is by offering alternative formats for interviews. Recruiters can offer a phone screen as a default option but also offer to either connect via a teleconferencing platform or an in-person interview based on an individual’s preferences and strengths.

Be intentional about recruiting individuals with disabilities. It is important for employers to remember that maintaining a diverse workforce creates competitive advantages and positively impacts the bottom line in the long-term. This is especially true for new or reopening businesses: committing to inclusive hiring from the outset and establishing your brand as an inclusive employer in your community will boost your brand among your target consumers. In order to reach and provide a bridge for job seekers with disabilities, recruiters should seek out the support of local disability service agencies to identify and recruit qualified job seekers. Partnering with these agencies can also inform an employer’s approach to making sure that new hires abide by OSSHA COVID-10 safety protocols at work.

Follow local government and OSHA guidelines for safety but allow for flexibility. It’s critically important that all employees feel safe enough to return to work. Employers should continue to follow the work safety guidelines provided by OSHA and the CDC as they reopen to guarantee employee well-being.

It is also important to ensure that employees are able to meet those standards and are not adversely impacted (such as individuals with sensory difficulties, individuals who have social awareness difficulties, and others). Speak to your employees that may have issues meeting these safety requirements and think creatively on alternatives to these protocols that better suit people with disabilities. For example: if an individual has trouble wearing standard issued masks with thick fabric, help them find an alternative mask that better suits their needs. If an employee has trouble with social distancing, place them in a role that requires less customer interface.

Make remote work a standard option—even after COVID stay-at-home restrictions are lifted. One of the few positives that have emerged from the pandemic is popularization of remote work as an alternative to in-person work. Numerous articles have emerged since the pandemic began on how remote work has become a boon for workers with disabilities because of the absence of commuting (primary barrier) and the built-in accommodations in the individual’s home.

There is a case of a tech company that has at least two hundred individuals with autism on staff whose CEO has said that remote work has actually improved productivity and communication among staff. The remote work option, though, is only available to individuals whose job requirements can be met via remote work. Not all individuals have this opportunity.

Staying connected and encouraging the feedback loop. Another key success that has emerged from an increasingly remote workforce has been the emergence of alternative modes of communication that employees and managers can use to stay connected. Watercooler conversations have been replaced with tools like Slack, which have been traditionally used in the tech industry. In-person meetings are now taking place over Zoom, Webex, or Microsoft Teams—the latter of which has built-in accessibility features such as AI generated live captioning. Training is key for everyone to access these platforms.

Improve digital accessibility. While remote work is a great accommodation, it is also important to guarantee access and participation of employees with disabilities in the company’s virtual spaces and meetings. Employers should make sure that virtual meetings are accessible (closed captions, ASL interpreters, recording meetings when possible, providing written materials before meetings and summaries after, etc.) and should invest in making shared documents and spaces accessible as well.

The Arc@Work works with public and private sector companies to either create disability-inclusive hiring programs or build upon existing initiatives. Through our work, we’ve placed more than 1000 individuals with disabilities into jobs at a 97% retention rate. We’ve also supported more than 500 businesses become more disability-inclusive. Wherever your company might be in your disability inclusion journey, we’re here to help. Contact us to set up a free consultation now.

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The Workplace in 2020: Getting People With Disabilities Back to Work Safely During COVID-19

This year’s National Disability Employment Awareness Month arrives at a precarious time in our country’s history: we continue to face the ravages of the COVID-19 pandemic and one of the direst economic recessions in recent memory. The coronavirus pandemic has caused more than 200,000 deaths and infected more than 7 million people, while also creating immense challenges for the American business community and workforce. Despite some signs that the economy is beginning to pick back up again, the Bureau of Labor Statistics still reports that more than 11.5 million jobs were lost since the beginning of the pandemic in February.

When you dig into the numbers, the research shows that this recession has not been felt evenly across the labor force, and that systematically marginalized communities—such as communities of color, immigrants, women and others—have experienced higher unemployment than average. Jobseekers with disabilities are among the groups that have been hit the hardest. Research conducted by Global Disability Inclusion suggests that close to 40% of people with disabilities were laid off or furloughed as a result of the pandemic.

The struggles for people with intellectual and developmental disabilities (IDD) to gain access to employment were already apparent: research indicates between 80 – 90% of people with IDD of working age were unemployed in the years leading up to 2020. This is the first of a two-part series that The Arc@Work will publish this month to speak on the new and emerging challenges faced by workers with IDD and how employers, disability services agencies, and individuals with IDD can work together on creating solutions that create inclusion and workplace equity.

Negative Impact and New Barriers for Job Seekers With IDD

For jobseekers with IDD, the safety threat posed by the coronavirus—coupled with pre-existing barriers to employment and a now struggling national economy—creates compounding barriers that now make finding a job in the community extremely difficult. Industries such as brick and mortar retail, hospitality, and others that have historically been open to hiring people with IDD have suffered tremendous losses. Many small businesses in the community have shut down either temporarily or permanently.

  • Barriers in public transportation and ridesharing: Many individuals with disabilities—especially those living in urban or suburban settings—rely on public transportation to get to work. There are very few public transportation networks around the country that are fully accessible to people with disabilities, and this problem is only further compounded by the threat of contracting the coronavirus in transit.
  • Increased competition: Millions of work-eligible Americans are out of jobs and are competing for the same jobs as people with IDD, many of whom are first-time job seekers and risk being overlooked in favor of more experienced applicants. This means that the hourly jobs that were previously available to people with IDD have now become harder to obtain as the demand for jobs drastically outweighs the supply.
  • Disappearing supports: Many individuals with IDD require the support of direct support professionals and job coaches to live independently and be successful in their jobs. The pandemic has hit the disability services industry hard, where many agencies have either been forced to close or have cut staff.

In a survey conducted by The Arc in May 2020 to gauge the effect of the pandemic on our network of chapters and affiliates, 44% of our agencies reported having to lay-off or furlough staff due to funding cuts. Nearly a third reported having trouble hiring and retaining staff due to prevailing economic conditions and fear of the virus.

  • One-size-fits-all approach to workplace safety: Safety should not come at the cost of inclusion in the workplace. For some, abiding by COVID-19 safety protocols is difficult, especially as it relates to social distancing and using personal protective equipment (PPE). Many people with IDD have sensory difficulties that make it difficult to wear masks or gloves at all times, while others may have difficulties observing social distancing etiquette. This may impact an employee’s ability to interface with customers in person or be in the workplace at all.

Individuals with disabilities face these barriers—and more—in their efforts to get back to work, but these are all challenges that employers and disability services agencies can work together to solve. In the next part of this two-part series, we will go over some of the things that employers can do right now and in the future to support individuals with IDD to overcome these challenges and return to work.

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Court Rules that Federal Disability Rights Class Action Against Charleston, West Virginia School District Can Proceed

Washington, D.C. – A federal judge has denied Kanawha County Schools’ (KCS) motion to dismiss a civil rights class action lawsuit filed by The Arc of West Virginia on behalf of children with disabilities in the county. The lawsuit alleges that the school district, which educates children in the Charleston, West Virginia area, fails to provide effective behavioral supports to students with disabilities and sends them home instead of educating them in violation of federal law. Plaintiffs The Arc of West Virginia and parents of two students with disabilities are represented by Disability Rights of West Virginia, Mountain State Justice, The Arc of the United States, the Bazelon Center for Mental Health Law, and the global law firm Latham & Watkins LLP.

The amended complaint, filed in April, describes how KCS disciplines 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.  Children with disabilities are suspended or sent to a separate special education classroom, instead of receiving individualized supports for behavior, required by federal law, that have been shown to help children to succeed in school. 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, 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.

KCS moved to dismiss the children’s case, arguing, among other things, that the case could not proceed as a class action because the IDEA requires that every individual student file a “due process” complaint with the West Virginia Department of Education before claims alleging systemic problems can be filed in federal court.  Judge Irene Berger of the U.S. District Court for the Southern District of West Virginia disagreed, holding that the students’ allegations were “structural in nature, and the[ir] experiences demonstrate the inadequacy of the relief available through due process complaints. … Requiring hundreds or thousands of impacted putative class members to individually exhaust remedies would serve no purpose.” Judge Berger also noted that “the remedies available [in due process proceedings] would not adequately address the alleged issues, and results would likely be piecemeal and inconsistent. West Virginia has two hearing officers, and the delay inherent in individual exhaustion would render any relief futile for many students.”

“The Arc has long fought for the rights of students with disabilities to receive the supports they need to thrive in their neighborhood schools alongside their peers without disabilities,” said Peter Berns, Chief Executive Officer of The Arc of the United States. “We are pleased that this decision allows West Virginia students with disabilities to continue to pursue this goal and vindicate their rights in court.”

“The Arc of West Virginia is committed to supporting the rights of students with disabilities throughout the state to receive the supports they need to progress academically and socially,” said Liz Ford, Executive Director of The Arc of West Virginia. “Students throughout West Virginia are struggling greatly during this pandemic and it is essential that we continue our advocacy to ensure that they have the behavior supports they need upon returning to school, particularly during this challenging time.”

Data from the West Virginia Department of Education shows that over 1,000 KCS children with disabilities were suspended during the 2018-2019 school year, causing them to fall farther and farther behind academically and socially. This number does not include all of the additional students with disability-related behaviors who were informally sent home from school early and/or told to stay home, without a formal suspension. It also does not include students with disabilities who were expelled from school for their disability-related behavior; those who were separated unnecessarily from mainstream classrooms and moved to segregated classrooms where they receive an inferior education; or those who were placed on “homebound” status where they may receive only a few hours of tutoring each week. 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. Read more about the case, which is continuing following last week’s decision, here.

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 more than 600 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 Bazelon Center for Mental Health Law

The 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.

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Dive Into Inclusive Volunteering: Apply for a 2021 MLK Day of Service Grant!

Now more than ever, Americans are looking for innovative ways to volunteer in their communities. For many, giving back means the opportunity to rebuild the neighborhoods they love, as well as the chance to momentarily relieve the anxiety everyone is feeling.

For the same reasons as Americans without disabilities, Americans with intellectual and developmental disabilities are eager (and able) to volunteer during this season as well. Thanks to a partnership between The Arc and the Corporation for National and Community Service, local nonprofits can now offer a solution that is a win-win for everyone. By applying for $5,000 and $10,000 grants this summer, community organizations can design inclusive volunteer programs so that everyone can serve their communities at this critical time.

Past grantees have demonstrated that including all citizens (regardless of background or ability) creates a more welcoming and equitable community for everyone. Many have also testified to the value of inclusive volunteering for the organization, with activities leading to new community partnerships and increased ability to reach new groups and service areas.

Keystone volunteer events must be held on the MLK Day of Service weekend (January 15 – 18, 2021). Volunteer activities can also occur throughout the grant period (October 2020 – September 2021).

Successful grantees will:

  • Partner with a service club to recruit volunteers with and without disabilities from diverse racial and ethnic backgrounds to participate alongside each other
  • Work with hunger and food insecurity focused groups (e.g., community food banks, food pantries, soup kitchens)
  • Provide food aid on the MLK Day of Service and MLK Day of Service weekend and continue through the end of the grant period (September 30, 2021)
  • Raise $31,000 (applying for a $10,000 grant) or $15,500 (applying for a $5,000 grant) in in-kind or cash matching funds to support the project

Now is your organization’s opportunity to join us and bring inclusive volunteering to your community! Apply for a 2020 grant today! 

All proposals must be received by Thursday, August 27, 2020 at 11:59 p.m. ET

Request for Proposal (Word) | Request for Proposal (PDF)

During a Crisis and Beyond, Congress Must Provide Paid Leave to Caregivers of People With Disabilities

By Peter Berns and Debra L. Ness

Before this pandemic, far too many people with disabilities and their families were on shaky financial ground, with little to no savings for a crisis. Workers with disabilities and workers whose families include people with disabilities were fearful of the consequences to their job if they faced a significant illness. Let’s be honest – before COVID-19 became a constant in our lives, disability equaled inequity in many aspects of American life.

And here we are, several months into a worldwide pandemic, yet Congress has failed to address the critical needs of people with disabilities and their families, especially when it comes to access to paid leave.

Access to paid sick days and paid leave are key to our country’s health and well-being, especially during this time of crisis. The coronavirus relief packages that have been signed into law fail to provide paid leave for millions of family caregivers of people with disabilities. Many employers, if they provide time off, will not be eligible for the tax credits to cover the costs of paid sick days and expansions to the Family and Medical Leave Act. As disability service providers have been ordered by government agencies to stop some services, families are scrambling to provide care to their family members with disabilities, often at the expense of their job.

Brandi and Caiden

Take Brandi Wetherald. Brandi’s 18-year-old son, Caiden, has disabilities – including autism and a chromosomal disorder. Brandi, a single mother, has always struggled to be there for Caiden without paid leave and has lost jobs because she has taken time off to be a caregiver and fight for her son.

“I was looking for better. I was looking for more understanding. I was looking for what would serve him best and people just weren’t getting it,” Brandi said.

In her early 40s, she had to drop out of college to make sure that Caiden was getting the support he needed, putting off her goal of furthering her education and opportunities. But in August 2019, she started taking classes again, and she and Caiden are hoping to graduate together next year.

Those plans feel like they’re slipping away. Caiden has lost almost all of the services he usually receives in school due to the disruption caused by this pandemic. The isolation and loss of routine is affecting Caiden’s mental health and Brandi is trying to keep both of them on track to graduate. But Brandi’s remaining paid sick time is in the negative. She had the flu last year and Caiden was hospitalized. And now she’s running out of vacation days. So while Brandi can work from home, she doesn’t have the time she needs to provide the supports that Caiden was getting in school to reach his goals and to be present for him.

“It is overwhelming,” said Brandi, adding that Caiden needs her now more than ever. “When you talk about kids who are isolated already and don’t have a large network of friends, they are even more isolated during this pandemic.” Brandi fears what’s next because she is unable to invest enough time in Caiden or her job. “It has been terrible because there have just been some days where I haven’t been able to get my work done and I worry about that,” she said.

This reality is all-too-familiar for people with disabilities and their families, who experience every day the hardship that can result from a lack of paid leave for caregivers. The fact is 1 in 4 adults in the United States lives with a disability. And more than 65 million people in the United States are providing care for family members who are ill, aged or living with a disability – including parents, grandparents, siblings and others.

Almost all caregivers for people with disabilities have had to go into work late, leave early, or take time off during the day to support their family members. Many have been forced to take a leave of absence, retire early, or give up work entirely to provide care. This is because only 19 percent of all workers have access to paid family leave through an employer. This imposes a huge economic burden on families: it’s estimated that workers lose $22.5 billion in wages annually when they have to take leave without pay to care for a family member, income they cannot afford to lose. And we can expect this to get worse as additional supports families rely on, such as day programs, daycare centers, and school services, face closures due to outbreaks.

The struggles of families like Brandi and Caiden were the focus of two hearings in the U.S. House of Representatives on paid family and medical leave earlier this year. And Congress did pass limited provisions in March, providing some caregivers with 10 days of emergency paid sick time and an additional 10 weeks of paid family leave.

But they didn’t go far enough. Congress didn’t cover millions of workers like Brandi. The new emergency law left out workers for employers with more than 500 employees and limits access to paid family leave to only parents whose child’s school or child care is closed. This emergency paid leave needs to be expanded to cover all family caregivers and their reasons for leave. And then we have to go further – we need to ensure that family caregivers are protected by a permanent, comprehensive, inclusive, national paid family and medical leave program that would support all of our families, including families with members with disabilities. It would guarantee that workers are not just entitled to time, but that they have the income and job security needed to take that time. So that Brandi can work and be there to support Caiden when he needs her. “I owe it to him. He’s my purpose,” said Brandi.

By helping caregivers stay in the workforce and improve financial stability, paid leave helps businesses reduce the high costs of turnover and supports the economy in our local communities. The evidence is overwhelming that paid leave is not just good for families, it also benefits businesses and our economy.  

It’s past time for Congress to prioritize the needs of the people with disabilities and their families—both in emergency legislation in response to the pandemic and in a permanent, national solution. Brandi, Caiden, and millions of other Americans need the stability and security of a system set up to ensure that all families and caregivers have the ability to care for themselves and loved ones without risking their job, their health, or their family’s security.

Peter Berns is the Chief Executive Officer of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (I/DD), with 600 state and local chapters across the country.

Debra L. Ness is president of the National Partnership for Women & Families, a nonprofit, nonpartisan organization that works to achieve equality for all women.