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

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!

 

silhouette of a hand casting a paper ballot into a box

The Arc’s Statement on the 2020 Election

The Arc released the following statement about the 2020 Presidential election:

“This was an historic election given the challenges our nation faces, and voters turned out in record numbers to make their choice about our future. While people with disabilities still face far too many barriers to accessing the right to vote, including physical obstacles and state laws that prohibit some people with disabilities from voting, millions persevered amidst health and safety concerns to exercise their right.  Their votes counted, as did the votes of their family members, friends and supporters.  

“While the election is over, our nonpartisan advocacy continues at the local and state levels, in the halls of Congress, at the Supreme Court, and will continue in 2021 with the Biden Administration.

“We are still in the COVID-19 crisis. This virus has disproportionately impacted people with intellectual and developmental disabilities, their families, and direct support professionals.

“People with disabilities have died from COVID-19. They have faced discriminatory medical policies and practices. Lives have been interrupted, inclusion in the community has been snatched away. Their family members, who were already taking on the majority of caregiving responsibilities, have taken on even more, in many instances disrupting their own lives. And the dedicated direct support professionals have dealt with challenges in protecting health and safety without the necessary protective equipment.

“These impacts are still with us today and will be until our country gets this virus under control and policies in place that meet the needs of people with disabilities, their families, and caregivers. We also must continue to address the many injustices that people with disabilities experience on a day-to-day basis.

“In just a few days, the U.S. Supreme Court will hear a case that threatens to undo all the progress we made with the Affordable Care Act. Access to consistent and reliable healthcare is critical for individuals with disabilities, and the law created much-needed reforms to health insurance, addresses systemic discrimination, and expands coverage.

“We must address the high unemployment rates of people with disabilities and the economic insecurity too many families and individuals face. We have to support families as they struggle with caregiving responsibilities by implementing inclusive paid leave.

“There still is a lot of work to do and, just as The Arc has done throughout our 70-year history, we will not rest until the humanity and needs of people with disabilities are respected,” said Peter Berns, CEO, The Arc.

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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 Arc Deeply Troubled by U.S. Supreme Court Voting Rights Decision

WASHINGTON, D.C. – The Arc is deeply troubled by the U.S. Supreme Court decision in Merrill v. People First of Alabama, effectively banning curbside voting in Alabama, a critical accommodation to ensure the health and safety of voters with disabilities during the COVID-19 pandemic.

The lawsuit was filed on behalf of voters with underlying health issues who were concerned about the health risks of in-person voting during COVID-19. Nearly 1.6 million people—almost half of the state’s electorate—are high-risk individuals who are more susceptible to death or serious illness from COVID-19 and are protected as individuals with disabilities under the Americans with Disabilities Act (ADA). People First of Alabama—a group of people with developmental disabilities dedicated to self-determination and autonomy—served as an organizational plaintiff in the lawsuit to fight for the rights of people with disabilities in Alabama to receive the accommodations they need to access the polls.

“The Supreme Court’s decision endangers and disenfranchises voters with disabilities in Alabama who are at higher risk of contracting COVID-19 and experiencing life-threatening complications and death from the virus,” said Peter Berns, CEO of The Arc. “The Arc has been a leader in fighting for the rights of people with disabilities during this pandemic and has long advocated for necessary accommodations that enable many with intellectual and developmental disabilities to exercise their right to vote—a right which has all too often been denied. We are deeply disappointed the Court would deny the option for such an important accommodation days before Election Day, and without legal explanation, thereby depriving more than one million people with disabilities in Alabama of equal access to the polls.”

Because of the risks it poses during the pandemic, Alabama’s in-person voting program is essentially inaccessible to voters with disabilities who face a heightened risk from COVID-19. Curbside voting allows voters to receive and return ballots from inside their vehicles, enabling them to avoid crowds of other voters and limit contact with poll workers, thereby limiting their exposure to the virus. This accommodation is especially critical during COVID-19, but it has also been a widespread practice in nearly thirty states and encouraged by the U.S. Department of Justice even before the pandemic as a reasonable accommodation for voters with disabilities who face a variety of barriers accessing polling places. While Alabama has an absentee voting program, the ADA still requires states to make in-person voting accessible to people with disabilities. Both the Centers for Disease Control and Prevention (CDC) and the Election Assistance Commission have recommended curbside voting as a safer alternative to traditional in-person voting during COVID-19.

The right to vote is fundamental. People with IDD have the right to participate in our democracy, though this right has all too often been denied. It shouldn’t have to come at serious risk to a person’s health or life. In her dissent, Justice Sonia Sotomayor noted that “absentee and in-person voting are different benefits, and voters with disabilities are entitled to equal access to both” and quoted plaintiff Howard Porter, Jr., a Black man in his seventies with asthma and Parkinson’s, who told the district court: “‘[S]o many of my [ancestors] even died to vote. And while I don’t mind dying to vote, I think we’re past that – we’re past that time.’”

Ensuring voting independence, accuracy, and access are key issues for The Arc. Too many polling places and voting technology and practices throughout the country remain inaccessible and disenfranchise voters. To access resources for voters with disabilities during this election season, please visit our Voting page.

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 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.

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The Arc Recognizes Comcast NBCUniversal With the 2020 Catalyst Award

The Arc today announced it will honor long-standing partner Comcast NBCUniversal as the recipient of its 2020 Catalyst Award for their collaborative efforts to provide people with disabilities increased access to technology and more independence. The award recognizes businesses, individuals, and other organizations that have made extraordinary contributions toward greater social inclusion and the advancement of the human and civil rights of people with intellectual and developmental disabilities (IDD).

“We are thrilled to award Comcast NBCUniversal with one of The Arc’s greatest honors. The Catalyst Award recognizes Comcast NBCUniversal’s commitment to people with IDD through its efforts in technology, services, and public awareness. In 2020, people with disabilities face unprecedented challenges, amidst a global pandemic. Comcast NBCUniversal continues to step up as an ally and outstanding corporate leader in accessibility, and a champion of inclusion of people with disabilities,” said Peter Berns, CEO of The Arc.

The 2020 Catalyst Award recognizes Comcast NBCUniversal’s expansion of internet access before and during the COVID-19 pandemic, and its advances in accessibility such as voice-activated remote control, X1 eye control, and the company’s dedicated services center for customers with disabilities.

“It’s a fact that people with disabilities are less likely to have access to the internet and the technology necessary to lead more independent lives. It is our belief that everyone should have access to affordable internet, relevant assistive technology and the appropriate digital skills training.  We are honored to both partner and be recognized by The Arc for our collective efforts,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation.

In recent months, as the nation was abruptly shifting into stay-at-home orders and virtual connection became paramount in the pandemic, Comcast NBCUniversal acted quickly to expand the Internet Essentials high speed internet adoption program for low-income households, with 60-day free service offers to new customers and increasing internet speeds for all subscribers. They are working directly with school districts across the country to help connect families to the internet and provide access to devices for virtual learning. The company’s commitment builds upon their largest-ever expansion of Internet Essentials in 2019, when the eligibility was broadened to all qualified low-income households including those with people with disabilities. And their ongoing efforts to innovate and respond to their customers have resulted in tech advances that meet the needs of people with disabilities, and customer support in American Sign Language.

This year, Comcast NBCUniversal has also made important contributions in raising public awareness of the negative impacts the pandemic is having on people with IDD by including meaningful coverage of key issues on TODAY, MSNBC Live with Craig Melvin, and the NBC News digital platform.

The Comcast NBCUniversal Foundation has also provided flexible funding to community partners including The Arc so we could support immediate needs in our chapter network. Throughout our partnership, Comcast NBCUniversal’s continued and generous support of The Arc’s Tech Coaching Centers to expand digital technology opportunities for people with IDD has changed lives and opened doors for people with IDD. The company has a deep and meaningful commitment to advancing digital equity for people with disabilities, and that encompasses support of other disability organizations such as Easterseals and the American Association of People with Disabilities.

Comcast NBCUniversal is the sole recipient of The Catalyst Award this year.

close up of medical form with stethoscope

The Affordable Care Act: What’s at Risk?

The Affordable Care Act (ACA) made significant progress in expanding access to health care for individuals with intellectual and/or developmental disabilities (IDD). Access to consistent and reliable healthcare is critical for individuals with IDD, and the ACA created much-needed reforms to health insurance, addressed systemic discrimination, and expanded coverage. Yet it will all be at risk on November 10 when the U.S. Supreme Court hears a case seeking to overturn the law. Leading up to the ACA’s day in court, here is a primer on what the ACA does for people with IDD, and what’s at stake if the law goes away.

The ACA:

  • Helps people get health insurance
  • Requires that plans can’t exclude you or charge you more based on preexisting conditions
  • Bans benefits caps (annual and lifetime caps)
  • Requires all plans to cover “essential benefits”
  • Provides financial assistance for low-income people to access healthcare 

Loss of Health Coverage: Without the ACA, millions of adults and children may lose their health coverage, or it may become unaffordable. Millions of families may be left with limited and expensive options, with inadequate coverage. 

Pre-existing Conditions: We are concerned about the possible loss of protections for people with pre-existing medical conditions, including people with IDD. Millions of Americans have “pre-existing” medical conditions that could disqualify them from buying a health insurance policy if the ACA is dismantled. A “pre-existing condition” is any health problem a person has before new health coverage starts. It includes a broad range of common conditions such as diabetes, high blood pressure, cancer, or seizure disorders, including all types of disabilities. 

Without the protections of the ACA, any “pre-existing condition” could mean a person or family buying insurance would pay much more for a policy, if they could get one at all. Before the ACA, an insurer could outright deny people coverage for a specific pre-existing condition, charge them more, cancel a policy after the fact for utilizing needed health care, or deny health insurance coverage overall. Without the ACA, employers could drop coverage for any or all of the conditions they are now required to cover. The Trump Administration publicly committed to “protecting individuals with pre-existing conditions” but there are no specifics on how this would be accomplished.  

COVID Connection: Some of the millions of Americans infected by COVID-19 will have long-term health conditions that are “pre-existing conditions.” This new reality could make it challenging to find health insurance.  And millions of Americans are now also without jobs and without employer-provided health insurance, so the need for affordable care is even greater.

Lifetime and Annual Limits: Before the ACA, lifetime and annual caps were permitted. Even with insurance, this meant enormous out-of-pocket costs or losing your insurance if medical bills cost more than the capped amount. Individuals and families face going without needed treatment or bankruptcy when the caps are exceeded.

Essential Benefits: Before the ACA’s passage, many plans did not cover important services, like maternity care or mental health treatment. The ACA requires all plans to cover 10 “essential health benefits,” including rehabilitative and habilitative services and devices that are vital to people with IDD.

Preventive Care: If we lose the ACA, we also lose preventive care with no out-of-pocket cost. This means adults and children would no longer be able to access important services including immunizations, preventive screenings, well baby and well child visits without cost-sharing. Fewer people may get preventive exams to catch medical issues before they became serious or life-threatening (and more difficult and expensive to treat).

Expanded Coverage for Children until age 26: Prior to the ACA, many health plans removed adult children from their parents’ coverage, regardless of whether they were a student or lived at home with their parents. Under the ACA, plans that offer coverage for children must cover them until they turn 26. It’s been an important coverage expansion for millions of young adult children who have been able to stay on their family health insurance plan.

Affordability Provisions and Loss of Federal Subsidies: The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to millions of people, including individuals with IDD and other disabilities who were not otherwise eligible for Medicaid. If we lose the ACA, States would be forced to cover the 90% of the cost of the Medicaid expansion that the federal government currently pays, which may be all but impossible in the current economic situation. We may also lose refundable tax credits and cost-sharing assistance that helps reduce the burden on lower-income individuals and families.

Long Term Supports and Services: Several provisions of the ACA were designed to assist states to rebalance their long termsupports systems and invest in the community instead of costly and outdated institutions. States who expanded these options could face a devastating blow if the ACA is struck down. For example, with Community First Choice or 1915(k), 392,7000 individuals in 8 states (California, Connecticut, Maryland, Montana, New York, Oregon, Texas and Washington) would lose services totaling $8.7 billion per year. With respect to the State Plan Home and Community-Based Services Option or 1915(i), 81,000 individuals in 10 states and DC (California, Connecticut, Delaware, DC, Idaho, Indiana, Iowa, Mississippi, Nevada, Ohio, Texas) would lose services totaling $641 million per year.  This change would hurt people with IDD and curtail their opportunity for a full life in their community.

Protecting Civil Rights in Health Care: The ACA also includes the fundamentally important Section 1557 nondiscrimination provision, that prohibits discrimination on the basis of disability (and other protected categories) in health programs and activities.

Impacts on the Health Care System: Overall, a court decision that strikes down the ACA (or important parts of it) could have a broad, harmful impact on the health care system, especially during a pandemic when resources and staff are already strained. It would also increase uncompensated-care costs for hospitals. Health care systems and hospitals that serve disproportionately high numbers of low-income people will be the most at risk, and could be forced to cut services.

A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

Care During COVID-19: An “Essential” Working Family’s Story

By Sethany Griffin

A mother, father, and their two adult children stand smiling with their arms around each other in front of trees,

I am a member of The Arc and both a provider for adults and children with disabilities and a mother of an adult with autism and an intellectual delay. My son Karl is 19, and he typically attends an adult transition program five days a week where he learns vocational skills in the hopes of someday finding him a paying job. He also focuses on social interactions, self-advocacy, problem solving, self-care skills and strength building through physical therapy. 

My son’s transition program, like so many others, closed temporarily and without notice in the early months of the coronavirus pandemic. Like many families, we were left scrambling to ensure his needs were being met and that he wasn’t left alone, grappling with the unknown timetable of when things would be back to normal.

I work as the Director of Family supports for a large non-profit agency for families like myself, with children and adult family members with disabilities. My husband, Dana, had just started a new job and was not yet eligible for leave time. Our older son DJ, who is also Karl’s co-guardian, works as a direct service professional at a day program for the same non-profit as I do. All three of us are considered “essential workers.” We are also the only people who can effectively support Karl at home.

It has been—and continues to be—a huge struggle trying to juggle the work schedules of three “essential” adults while ensuring someone is staying with my son who can both understand and meet his needs. Karl is a wonderful young man. He loves all things Marvel and can tell you anything you ever wanted to know about Marvel heroes and the TV show “Supernatural.” He likes to ride his adult tricycle around the neighborhood and swim, and he wants to make money to buy all the Marvel Legends action figures in existence. When he is anxious, which is almost always, he knits his brows and rocks in place. For the unfamiliar onlooker, he can appear terrifying. He is also 6’6 and 330 pounds and can become aggressive when he is frustrated or scared. This isn’t something that just anyone could handle.
  
Ultimately, we decided that DJ would take an unpaid leave of absence to care for his brother. DJ is still living with us, so we covered his rent and paid for his food. But, going without a paycheck meant that he was no longer able to purchase non-essentials or save any money. By covering his bills, we have made our family financial situation even more precarious.

It is unfair to all of us that he had to make this sacrifice, but we weren’t left with any other choices.

Now that our state has started to re-open, we find the struggle even harder. All four of us are in one form or another back to work. When Karl returned to his program, he did it in a hybrid fashion, He doesn’t do well with “remote teaching” so those times were essentially useless and required a full-time caregiver. I am lucky enough to be able to work some hours from home, and my husband has started earning his paid time off. We are making it work, but this isn’t what “vacation time” was supposed to be used for. Right now, if Karl were to spike a fever for any reason, he would be required to stay home for two weeks. I don’t know what we are going to do when that happens, but we are a strong and resilient family, so we will continue to brainstorm and try to find viable solutions.

For people with disabilities and their families, it is so important that paid leave policies include all caregivers—not just parents. Siblings, cousins, Godparents, aunts, uncles, and grandparents have all stepped in and tried to help us. Paid leave for all caregivers would remove so much pressure from families who are already struggling with the expenses of caring for an individual with additional emotional and healthcare needs. A paid leave option for all caregivers is long overdue.