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

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

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

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

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

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

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

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

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

A man stands at the front of a classroom with children sitting at desks listening in the foreground

The Arc Partners With Comcast NBCUniversal to Increase Access to Culturally Competent Special Education Services for Students of Color with Disabilities

Washington, D.C. – As special education students face the continuing challenges of the COVID-19 pandemic, The Arc is pleased to announce that it has been awarded a $200,000 grant from Comcast NBCUniversal to connect families of color and families from low-income households with students with disabilities to valuable educational advocacy resources. The grant will also help to ensure The Arc@School’s continued growth and success in assisting students and families for many years to come.

To expand support for students with intellectual and developmental (IDD) disabilities, the organization will provide 250 scholarships for The Arc@School’s Advocacy Curriculum. The Arc will also engage in a cultural competency review of its current curriculum to inform the next iteration, increase accessibility for families and improve the impact on student education. With Comcast NBCUniversal’s support, The Arc@School aims to disseminate special education resources to at least 350,000 people in 2022.

“We are proud of our long-standing partnership that supports The Arc in its mission to provide resources for all students with disabilities – and their families – so they can live independently and actively participate in their communities,” said Dalila Wilson-Scott, EVP and Chief Diversity Officer, Comcast Corporation.

Far too many kids are being left behind during the pandemic, particularly students with disabilities from marginalized groups. The Arc fights for all students to receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law. The Arc@School program supports families of students with IDD to successfully navigate the special education system and get the supports and services they need to thrive in school.

“Equal access to education for all students is an undeniable right in this country. The Arc is committed to nothing less for students with intellectual and developmental disabilities. We are thankful for Comcast NBCUniversal’s continued support of our education advocacy and broad impact on the program, especially during this time of constant uncertainty in education. Families of all backgrounds need quality support in navigating special education – and we must ensure that we provide these resources in a way that reflects the unique experiences among us,” said Peter Berns, Chief Executive Officer of The Arc of the United States.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company that connects people to moments that matter. We are principally focused on connectivity, aggregation, and streaming with 57 million customer relationships across the United States and Europe. We deliver broadband, wireless, and video through our Xfinity, Comcast Business, and Sky brands; create, distribute, and stream leading entertainment, sports, and news through Universal Filmed Entertainment Group, Universal Studio Group, Sky Studios, the NBC and Telemundo broadcast networks, multiple cable networks, Peacock, NBCUniversal News Group, NBC Sports, Sky News, and Sky Sports; and provide memorable experiences at Universal Parks and Resorts in the United States and Asia. Visit www.comcastcorporation.com for more information.

The Arc advocates for and serves people wit¬¬h intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.
Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

A row of $20 bills

The Arc Supports Bill to Allow People With Disabilities to Earn and Save More Money

Washington, D.C. – The Arc supports a bipartisan bill introduced in Congress to finally give people with disabilities and older Americans significantly more freedom to earn and save money without risking the loss of vital benefits, their livelihoods, and their ability to support themselves and members of their family. The SSI Savings Penalty Elimination Act, introduced by U.S. Senators Sherrod Brown and Rob Portman on Tuesday, updates Supplemental Security Income (SSI) asset limits for the first time since the 1980s. Current SSI asset limits prevent individuals who receive the modest benefit from saving more than $2,000.

The bill raises SSI asset limits from $2,000 to $10,000 for individuals and from $3,000 to $20,000 for married couples and indexes them to inflation moving forward. SSI provides money to 8 million adults and children with disabilities and older Americans. Many recipients are Black, Hispanic, and other people of color and further marginalized – making it even more critical that Congress pass this bill.

“The SSI Savings Penalty Elimination Act is a positive step forward in The Arc’s ongoing push to give millions of people with disabilities the economic opportunity they deserve and more financial security to save for emergencies and unexpected expenses. We see too many people with disabilities and their families forced to impoverish themselves in order to maintain critical SSI benefits, instead of being able to save for the future and for emergencies that arise in all of our lives,” said Peter Berns, CEO of The Arc of the United States. “Raising asset limits would significantly improve the lives of people with IDD who receive SSI.”

For many years, The Arc has advocated relentlessly for changes to SSI asset limits and against the existing unfair and discriminatory caps. Along with advocates, we have continuously urged Members of Congress to update SSI asset limits to at least adjust for inflation, so that people with disabilities can take advantage of financial opportunity to provide for themselves and their families and feel a better sense of financial security.

The Arc sent a letter to Senators Brown and Portman in support of the bill. Read it here.

A volunteer in a tie dye shirt holds a paper bag of food donations

That’s Amore: Volunteers With Disabilities Address Food Insecurity Through Pasta Kits

In honor of National Volunteer Month, The Arc is highlighting the efforts of volunteers with disabilities. While these individuals are serving their neighbors, they are also a living example of the tremendous value they bring to their communities.

A volunteer in a wheelchairs sits at a table. He is working on meal kit assembly, with various items strewn across the table, wile other volunteers stand nearby helping.

The staff and clients at AHRC Nassau know the value of a home cooked meal – and the comfort and joy it brings to a family. For their 2022 MLK Day of Service event, they wanted to extend that joy while offering tangible food assistance to their community in

Brookville, New York. They decided to create, pack, and deliver pasta meal kits to their neighbors experiencing food insecurity. Volunteers were empowered by learning what ingredients and steps were needed to cook a delicious meal. They also helped to show that people with disabilities are not always the ones in need of service and can give back to their communities as well.

Twenty volunteers with disabilities directed each phase of the process, from finding all the ingredients to setting up the event in January. Some of AHRC Nassau’s clients created hand-written cards celebrating the spirit of the initiative. Others designed artwork, each piece inscribed with a quote from Dr. Martin Luther King Jr.: “Only in the darkness can you see the stars.” These items were placed in the meal kits alongside the ingredients.

A woman with red dyed hair in a black sweatshirt stands, smiling and holding a package of food, in the grocery store.As the big day arrived, volunteers with disabilities again led the way, including Nijah, who oversaw setup. Others prepared the boxes, packed the meal kits, and completed quality inspection. Once all boxes were packed and ready for distribution, the group delivered 100 meal kits to Island Harvest, Long Island’s food bank. In total, 400 individuals were served that day.

Long Islanders facing hunger weren’t the only beneficiaries of the day. Each volunteer shared a collective sense of accomplishment in combatting food insecurity in their backyard. More importantly, the volunteers with disabilities felt pride that they have demonstrated that everyone plays a critical role in making their community more equitable for all—showing the true meaning of the quote from King that “Everybody can be great…because anybody can serve.”

Want to learn how to engage volunteers with disabilities? The Arc’s tip sheet Planning for Including People with Intellectual Disabilities in Volunteer Programs can help your organization get started.

A man stands at the front of a classroom with children sitting at desks listening in the foreground

The Arc Announces Grant from The Coca-Cola Foundation to Support the Dissemination of Special Education Resources to Ensure Equality for All Families

WASHINGTON – Students with disabilities and their families are experiencing yet another disrupted school year, as the COVID-19 pandemic continues to confront educators and families and creates new challenges in almost every aspect of education. The pandemic underscores the long history of disparities in education for students with disabilities and their families and the need for overdue improvements to the system.

Today, The Arc is pleased to announce that we have been awarded a grant from The Coca-Cola Foundation to expand our support of students with intellectual and developmental disabilities (IDD) and their families. It is a critical time to ensure that students and families are informed and equipped to advocate for what they need to achieve. The funding will allow The Arc@School to broadly disseminate information about special education to 350,000 people – leveraging our new Spanish-language resources to reach Spanish-speaking communities that have been historically underserved and provide information to assist parents to better understand and more confidently navigate the complicated special education system.

“We are excited to receive support once again from The Coca-Cola Foundation. It will allow us to help students with intellectual and developmental disabilities and families feel empowered to gain the benefits of public education in the least restrictive setting possible, as mandated by federal and state law,” said Peter Berns, Chief Executive Officer of The Arc of the United Sates. “Throughout the pandemic, time and time again, families have had to fight for their right to be included in school in a manner that is equitable and set up for success. Equal access to education is a long-standing priority of The Arc and we will keep pushing for better for as long as it takes. We thank The Coca-Cola Foundation for staying committed to education for people with disabilities and for their generous support.”

The Arc@School is The Arc’s National Center on Special Education Advocacy. The Arc@School supports students with IDD (and other disabilities) and their families to successfully navigate the special education system and get the supports and services they need to thrive in school. The program also supports educators to better understand and fulfill their responsibilities toward students and families in the special education system.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of nearly 600 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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

The Coca-Cola Foundation

Established in 1984, The Coca-Cola Foundation has invested more than $1.2 billion globally to protect the environment, empower women to thrive and to enhance the overall well-being of people and communities.

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Federal Support Can Seed Big Improvements in Mobile Response

By Whitney Bunts & Carlean Ponder

At the end of December 2021, the Centers for Medicare and Medicaid Services (CMS) released guidance on the structure and implementation process for community-based mobile crisis intervention services, which respond to mental health crises. The guidance is an excellent rubric for states to follow when beginning to implement safe, accessible, equitable, and police-free mobile response services in anticipation of the launch in July 2022 of 988, the national suicide and mental health crisis number. 

The CMS guidance is a product of the American Rescue Plan Act (ARPA). As part of ARPA, Congress created an 85 percent Federal Medicaid Assistance Percentage (FMAP) for mobile response services. This means that the federal government will cover 85 percent of the cost of states’ mobile response services, with the states responsible for the remaining 15 percent. The FMAP funding is a 3- year federal match that will start in April 2022 and can be used within a 5-year time span. Additionally, ARPA awarded $15 million in planning grants to help 20 states build a mobile response infrastructure.

The guidance outlines best practices and specifies allowable uses for mobile response services interventions, such as:

  • Encouraging staffing structures that don’t rely on law enforcement,
  • Adding peer and family support specialists as part of mobile response teams,
  • Ensuring mobile response covers people with substance use disorders,
  • Recommending partnerships with community-based organizations, pediatricians, and schools, and
  • Providing an enhanced administrative match for some Medicaid agency costs if they implement text and chat mental health services.

The full text of the guidance provides many additional details and best practices, but the five listed above will be especially beneficial to the implementation and development of youth mobile response services. The combination of community crisis care, the expansion of mobile crisis services, and the implementation of 988 will be key strategies for advancing the safety of youth, especially among youth with disabilities, as part of a holistic approach to behavioral challenges in school settings. Studies have consistently shown that students with disabilities, particularly Black students with disabilities, are disproportionately disciplined for demonstrating behaviors described as “challenging.”

According to a 2018 Government Accountability Office report, Black students accounted for 15.5 percent of all public school students but represented 39 percent of those suspended from school. Law enforcement involvement also disproportionately affects students with disabilities, especially Black students. According to data from the U.S. Dept of Education, during the 2015-2016 school year, students with disabilities represented 12 percent of the overall student enrollment and 28 percent of students referred to law enforcement or arrested. Additionally, the 2015-16 data showed Black students represented 15 percent of the total student enrollment, and 31 percent of students who were referred to law enforcement or arrested – a 16 percentage point disparity.

In one incident captured by a viral video, police were called to apprehend an upset 5-year-old Black child who left school premises. Officers placed the child in handcuffs, returned him to the school, and berated him for crying and kicking. These types of interactions between students and the police are common, and they often leave youth traumatized and distrustful. The CMS guidance, if robustly implemented by localities and with an emphasis on developing school partnerships, can help deter harmful punitive actions and provide an alternative to law enforcement referrals.

As the federal government and states work together to support new crisis services such as the 988 national mental health crisis hotline, mobile crisis units, and respite centers, it is critical to implement these best practices in a manner that does not replicate carceral systems. While the goal is to eliminate law enforcement involvement with youth in a mental health crisis, we do not want to shuttle youth from one carceral system (detention/court involvement) to another, such as forced treatment in mental health facilities. As communities plan their crisis response systems, it is vital that stakeholders, including state and local agencies, ensure youth and youth with disabilities are included in all conversations.

Overall, this guidance is a big win in the crisis and 988 advocacy community. But local, state, and federal policymakers, agency officials, and program leaders need to do more to explicitly address the mental health crisis of young people and other special populations. Locally, schools need to collaborate and partner with mobile response teams to better meet the needs of youth, particularly Black and brown youth, and youth with disabilities. State legislators and officials must recommend that their state departments of education use funding from ARPA to support and sustain mobile response teams in schools. Federally, Congress should prioritize police-free mobile response services for youth through the FY22 and FY23 budgets.

Whitney Bunts is a policy analyst on the Youth Policy team at CLASP. Carlean Ponder is the Director of Disability Rights and Housing Policy at The Arc and she is a part of CLASP’s Youth Mobile Response Working Group.

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Comcast NBCUniversal and The Arc Collaborate to Make Life-Changing Impact With Digital Skills Efforts for People With Disabilities

For people with intellectual and developmental disabilities (IDD), digital access and skills are a critical component of gaining independence. In 2021, The Arc and Comcast NBCUniversal once again teamed up to open digital doors for and with people with IDD.

The Arc and Comcast NBCUniversal have a long-standing partnership to do this work – in 2020, the corporation renewed its support with $400,000 for our Tech Coaching Centers and to buoy chapters that have been negatively impacted by the COVID-19 pandemic. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community. Through this partnership, since 2017, more than 2,160 clients have received basic digital skills training at 19 sites around the country.

This year, the needs were dire, and the impacts of this tech expertise spanned many aspects of life, including vital health support, access to education and employment opportunities, and a remedy for ongoing isolation in the pandemic.

“For years, our partnership with Comcast NBCUniversal has laser-focused on how technology can improve the lives of people with disabilities. What stands out this year is the stark, life-changing impact of this work. We have all experienced challenges since the start of the pandemic, but for many people with disabilities, the disruption to their lives could have been catastrophic. Our chapters supported people to withstand this storm, and gain new skills and grow,” said Peter Berns, CEO, The Arc.

Here is a sample of how this program impacted the lives of people with disabilities across the country.

Improving Health

Candy, The Noble Arc of Greater Indianapolis (Indiana)

Recently, Candy has begun experiencing the early stages of Alzheimer’s disease. When Candy becomes frustrated with lapses in memory, her tech coach reminds her to visit the computer lab. There, they work together on pulling up websites where she can listen to her favorite country songs. With Candy taking the lead as much as possible and a tech coach providing support, Candy logs onto YouTube and chooses her music. Music activates a different part of the brain than the areas impacted by memory loss, so Candy can remember the lyrics and sing along with all her favorite artists. Sometimes all she needs is 20 minutes of relaxing to her favorite songs to reset her day.

Cesar, The Arc of Weld County (Colorado)

In a previous job as Office Assistant years ago, Cesar demonstrated his aptitude and interest in computer work. In fact, many of his electronic forms are still used at the organization today. This year, Cesar received a Chromebook from the chapter and his tech abilities improved even more, allowing him to participate in many virtual engagement opportunities. In particular, Cesar has benefitted from telehealth. At times, Cesar experiences significant anxiety when preparing to travel via bus to medical appointments. In a tech coaching session, he learned how telehealth could ease his apprehension and maximize his self-care and health management. A bonus from this session was Cesar met a new friend who shared that she would be delighted to support Cesar when he needed to travel to an appointment. Cesar’s connections are growing online and offline, leading to overall improved health and outlook.

Remedying Isolation in the COVID-19 Pandemic

Joseph, The Arc of Lane County (Oregon)

Joseph is very social. Before the pandemic, he would spend his days visiting with friends and volunteering at a local food pantry. With no social media, technology, or even internet, he was extremely sad when in-person programming shut down. With tech coaching, Joseph was able to acquire a tablet, create a Facebook account and send messages to people he has missed over the last year and a half. He quickly reconnected with about 50 friends! Joseph has also learned how to use a transportation app to find bus routes to places he wants to visit. He is now able to communicate with some of his favorite people and cherishes this newfound social outlet.

Wesley, New Star Services (Illinois)

Wesley wanted to learn how to use an iPad, specifically to learn how to use Zoom to have meet ups where he could see his friends. Through four in-person sessions, he learned how to access Zoom on the iPad, begin and end the session, and adjust the volume as needed. Gaining the ability to connect with friends and family, especially during this time, is important to help combat feelings of isolation and support mental health. Wesley is able to virtually connect with the people who are an important part of his life.

Accessing Education and Employment Opportunities

Mari, The Arc of Lane County (Oregon)

Mari wants to get her GED and go to cosmetology school. She had tried taking the GED prep classes at community college but was often unable to attend due to a lack of transportation. Although her home has Wi-Fi, she had nothing more than a gaming console. Now, she has purchased a laptop and works on educational modules at her convenience from home. With the support of a tech coach, she has learned to utilize Google Docs to write essays, Grammarly to help her with spelling, punctuation, and grammar, and Khan Academy to work through academic education modules. She is also using other websites to practice her reading and writing skills. Mari is now enjoying the learning process and is feeling more independent and confident as she works at her own pace toward her educational goal.

Samantha, The Arc of Southern Maryland

At the beginning of 2021, a clerical position at the chapter opened, and Samantha saw the opportunity to learn more skills and take on more hours and responsibilities. She trained diligently until she was comfortable with the computer program necessary to do this job. Samantha knows she is making an impact, sharing “I like being able to help employees.” Her boss says, “She is a great resource to the department.”

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

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

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Families Like Debbi, Josh, and Victor Need Your Support.

The Arc has been advocating for decades to help family caregivers—advocating for health insurance, for paid family and medical leave, and respite services and other family supports. And this advocacy has taken on even more urgency during the COVID-19 pandemic.

Families like Debbi, her husband Victor, and their son Josh need our support more than ever.

“Josh was born about eight weeks early with a grade four brain hemorrhage, so he was one of the sickest babies in the neonatal intensive care unit. It started our roller coaster of a journey of having a child with complex medical needs and disabilities.”

Debbi and Victor struggled to hold onto their jobs while managing Josh’s complex medical needs and raising their two other children. Victor was often called away for active duty with the military. Debbi often worked during the night to meet her deadlines and hold onto the health insurance they depended on to pay for Josh’s medical care.

“And that insurance, it was always in the back of my mind, was what was keeping Josh alive.”

The challenges of balancing work and family caregiving responsibilities began to mount. Debbi struggled to get approved for unpaid leave and as Josh’s care needs increased, Debbi had to reduce her working hours substantially. This was a financial burden for the entire family and increased her worry about losing her job altogether.

Reflecting on that time, Debbi explains:

“It was a very difficult time emotionally, physically, and also financially. If I had been able to get paid leave, our struggles would have been so much less critical.”

Like Debbi, most Americans cannot take extended unpaid time away from work to care for a family member. Nor are they able to wait on years-long waiting lists for supports and services that may never come.

That’s why The Arc is working to make a national paid family leave program a reality for ALL who need it.

That’s why we’re advocating for home and community-based services to be available when they’re needed most.

Family caregivers, and their loved ones with intellectual and developmental disabilities, experience challenges in their daily lives that you and I never even have to think about. The Arc must be there alongside them. But we can’t do it without you.

You can help overwhelmed families navigate the complex developmental disabilities services systems for infants, children, and adults with IDD by giving to The Arc.

Can we count on you to stand with family caregivers by supporting The Arc today?

Join us and make a difference. Donate to support our critical advocacy today and sign up for updates to advocate with us when it matters most.

Your gift will be matched!

 

Brittany-simuangco

Child Tax Credit Helps Working Moms Like Molly Stay Afloat and in the Workforce

A woman sits on the ground with mulch and a fallen tree around her. On her lap is her young son. She is wearing a mask and holding him affectionately. For moms like Molly, the past four months have meant long-overdue help in making ends meet. Molly works full time and manages the care for her 15-year-old son, Reid, who has a condition called Angelman’s Syndrome. Reid requires specialized caregiving for feeding, diaper changes, and constant monitoring for safety due to seizures and mobility issues.

What has been the difference in the last four months? The Child Tax Credit (CTC), a monthly cash benefit for children for which low and middle-income families can qualify. It has helped families like Molly’s pay for rent, food, child care, health care co-pays, school supplies, and other expenses across the country. For caregiver parents, it’s an especially needed benefit. As Molly says, “I am using this to pay for help, food, and transportation so I can stay afloat when forced to leave work to be a caregiver when no one else can and give Reid’s elderly grandma a break once in a while so she can continue to help with his care going forward.”

But Congress is currently debating if they should continue these crucial payments. Some legislators want to reduce this credit, limit the families who can receive it, and take it away from some of the lowest-income families by instituting a work requirement. This change would disproportionately impact parents who took time away from work to care for their child with a disability or complex medical needs. As Molly says:

“We have always had a hard time getting caregivers to help in the home and rely heavily on Reid’s 73-year-old grandma to fill in the scheduling gaps.  A few years ago I gave up working in the clinic as a prosthetist and as an instructor at the University of Washington and took on a work-from-home role with the corporate office of my company.  This was necessary in order to have enough schedule flexibility to ensure Reid is cared for in the summer and enabled to attend school the rest of the year.  Reid qualifies for Medicaid and has a Basic Plus Waiver for in home caregivers and other assistance. Over the past two years, I have had to take unpaid time off work, accept furlough from my job, and rent out half my house in order to make up for Reid not being in school and the lack of available Medicaid-paid caregivers.” The CTC is making a critical difference for Molly, Reid, and many more families, so penalizing caregiver parents is unacceptable.

As we learned when a work or earnings requirement was proposed in Medicaid a few years ago, these unnecessary rules only create costly, bureaucratic processes that restrict access. They often penalize people who are working, but who need to leave the workforce for a period of time for their own health reasons or to take care of a loved one. As Molly says: “Every time I’ve had to take time away from my paid job to be a caregiver for Reid, I am scared to death that I will lose my job and jeopardize my career prospects.  I have worked for years to be a good prosthetist and excellent corporate employee.  The small amount of assistance the tax credits give for caregiving is not in any way an incentive to leave my paid job. They are only enablement to continue working at BOTH of the jobs in which I am fulfilled as a productive member of society.”

A work requirement would disproportionality harm parents with disabilities and families with children with disabilities. It is past time for Congress to recognize that caregiving is work and provide essential supports to families through the Child Tax Credit.

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Members of Congress Join Parents, Caregiving Advocates to Demand Urgent Care Infrastructure Investments in Build Back Better Budget Reconciliation

WASHINGTON, DC — Speaker Nancy Pelosi, U.S. Senators Cory Booker (D-NJ), Maria Cantwell (D-WA), Robert Casey (D-PA), Tammy Duckworth (D-IL), Kirsten Gillibrand (D-NY), Patty Murray (D-WA) and Ron Wyden (D-OR), Reps. Rosa DeLauro (D-CT), Debbie Dingell (D-MI), Lloyd Doggett (D-TX), Sara Jacobs (D-CA), Jackie Speier (D-CA) and Bobby Scott (D-VA) joined parents, caregivers, care workers, and advocates Thursday to express support for care infrastructure investments in the Build Back Better budget reconciliation package.

Specifically, members of Congress voiced their support and explained why workers, families, businesses and our economy need care infrastructure investments immediately, including paid family and medical leave, in-home-and community-based services for elders and people with disabilities, a fully refundable Child Tax Credit (CTC), living wages and a path to citizenship for all care workers.

“All over the country people with disabilities, and their families are going without the support that they need due to decades of lack of investment in Home and Community-Based Services, resulting in stagnant pay for direct care worker wages, for a workforce doing life-giving work,” said Nicole Jorwic, Senior Director of Public Policy, The Arc of the United States. “The dedicated funding for HCBS will raise wages for these workers, create more and better direct care jobs, provide more services for those going without, and support family caregivers who are currently filling the gaps that the service system leaves behind. Now is the time to build back better to support people where they want to live, in their homes and communities.”

“The time to build a care infrastructure that lifts our economy, our families and our country is now. America’s moms, dads, and caregivers are rising across the nation to let Congress know that care can’t wait, and neither can our economy,” said Kristin Rowe-Finkbeiner, Executive Director and CEO of MomsRising. “We must end the days when moms, dads, and caregivers lose their jobs when a baby comes or critical illness strikes, when families can’t afford quality child care, when care workers don’t earn living wages, when people with disabilities and the aging can’t access or afford in-home care, and when tens of millions of America’s children are raised in poverty. A care infrastructure will lift families, enable moms and parents to work, support businesses, boost our economy, and create millions more good jobs. It will allow for a just recovery from the pandemic and make our country more successful.”

“Small businesses are demanding programs like paid leave and child care that will help ease the burden of high costs on working families and support entrepreneurs. It’s past time to level this playing field,” said Main Street Alliance Co-Executive director Chanda Causer. “An investment in our overall care economy is an investment in small businesses, and our local community. It is important to move both pieces of infrastructure legislation together. One without the other will limit an equitable or sustainable recovery. Small businesses are watching closely to make sure any investments in our economy are truly investments in an equitable recovery and future.”

“Home and community based services literally keeps myself and millions of Americans alive and at home with our families. Fully funding home and community-based services, would allow seniors and people with disabilities to receive the care they need at home to live with dignity and respect with their families and loved ones,” said Ady Barkan, Co-Founder of Be A Hero. “Not only will fully funding home and community based services allow for seniors and people with disabilities to live at home with dignity and respect, but it will finally give caregivers the respect they deserve through a living wage.  The historic investments in HCBS will have an outsized impact on the nation’s overall employment, and the employment of women and women of color. Millions of Americans are counting on Members of Congress to seize this moment, be heroes, and fully fund home and community based services.”

“Home care workers no matter where we work or live need the right to form a union,” said Latonya Jones-Costa, a home care worker from Atlanta. “I’m an expert in my field with specialized skills and advanced certifications. I have just as much training and qualifications as other healthcare workers; however, I don’t earn a family-sustaining wage, have healthcare. I have to work two jobs just to keep the lights on. It’s hard to fight for those basic benefits when I don’t have an opportunity to join a union, and unfortunately in our industry that was done by design. Now we have a better chance to undo these injustices and fight for our basic benefits so we can better provide essential care to our clients.”

“The pandemic has exacerbated the care crisis most women — especially Black and Brown women — in this country have been facing for decades. Millions of women have been forced out of the labor market as women-dominated industries were hit the hardest by the pandemic and caregiving needs at home increased,” said Monifa Bandele, Interim President and CEO at TIME’S UP Now. “The system is broken and women and families are suffering, and so is the economy. Women’s labor force participation has reached its lowest point in 30 years. We can’t achieve family economic security or safe, healthy, thriving communities if women can’t productively engage in the workforce because they don’t have access to quality child care or care for their elderly relatives or family members with disabilities. We are the only wealthy nation that doesn’t guarantee paid family leave, which undermines our workers’ productivity. Care can’t wait and the time to care is now.”

“Here’s the bottom line: Babies’ growing brains can’t choose between the things they need. Neither should Congress,” shared Dr. Myra Jones-Taylor, ZERO TO THREE’s Chief Policy Officer. “Millions of parents in this country are forced to make impossible decisions every single day about caring for and supporting their babies. Today, we are on the cusp of shoring up our crumbling care infrastructure and supporting families and parents in providing for their children. The Build Back Better Act answers the call for a baby agenda that provides elements essential for healthy development with paid family and medical leave; a comprehensive child care system that addresses both the high costs and limited supply of quality care that plagues parents with young children; and an enhanced Child Tax Credit that could cut child poverty in half. This is a once-in-a-generation opportunity to respond to families’ needs today and to build a strong foundation for generations to come. Babies and families need a care infrastructure that paves the way for healthy development and strengthens families, communities, and our country.”

“We have the opportunity to do something meaningful—and truly transformational—to help every working family in this country but particularly the women of color hit hardest in an ongoing crisis,” said Dawn Huckelbridge, Director of Paid Leave for All. “We have the opportunity to pass policies that would yield millions of jobs, billions in wages, and trillions in GDP and to leave a powerful, profound legacy—to finally make history by passing paid leave in the United States. Care must be the cornerstone of our recovery, our rebuilding, and this package.”

“Families can’t thrive, and the economy can’t recover, until we have the policy solutions that support all of us in caring for the people we love,” said Olivia Golden, executive director of the Center for Law and Social Policy (CLASP). “That’s why we urge Congress to ensure the Build Back Better Act includes provisions to address our nation’s long-standing failure to support care for children, seniors, and people with disabilities—problems, which the pandemic has magnified, that disproportionately affect women, children, and communities of color. Significant investments in child care, pre-K, paid family and medical leave, continuation of the expanded child tax credit and Earned Income Tax Credit, and a pathway to citizenship are essential for our economic recovery.”

“People across the country are waiting for the Build Back Better agenda to pass, including robust investments in the care work that allows all other work to happen,” said Ai-jen Poo, executive director of National Domestic Workers Alliance and Caring Across Generations. “We all deserve an economy that gets women back to work, and we’ll get there when our leaders invest in home and community-based services, expand care services for our elderly and our loved ones with disabilities, lower care costs for families, and raise wages for the essential workers who do the work that make it all possible. It’s time for Congress to deliver and ensure that all of us, especially care workers themselves, can access the care we deserve.”

“Comprehensive, universal paid family and medical leave is essential for workers now more than ever,” said Lelaine Bigelow, Vice President for Social Impact and Congressional Relations at the National Partnership for Women & Families. We are grateful to our Congressional leaders who understand this, and who continue to fight for legislation that truly builds back better and provides support for women and families at this time when they need it most. Without robust care policies, our economy will only continue to suffer. At a time when many Americans are worried about their health and their economic stability, care simply cannot wait.”

The event was organized by MomsRising and Care Can’t Wait in partnership with Better Balance, Advocates for Children of NJ, American Association of People with Disabilities, American Federation of Teachers, Be a Hero, Building Back Together, Campaign for a Family Friendly Economy, CAP Action, Caring Across Generations, Center for American Progress, Center for Law and Social Policy (CLASP), Child Care Services Association, Coalition of Labor Union Women, AFL-CIO, Community Change Action, DC Action, Equal Rights Advocates, Family Values @ Work, Family Voices NJ, First Focus on Children, Institute for Women’s Policy Research, Kansas Breastfeeding Coalition, Low Income Investment Fund, Main Street Alliance, NARAL Pro-Choice America, National Asian Pacific American Women’s Forum (NAPAWF), National Association for Family Child Care, National Council of Jewish Women, National Domestic Workers Alliance, National Organization for Women, National Partnership for Women & Families, National Women’s Law Center, NCBCP/Black Women’s Roundtable, Oxfam America, Paid Leave for All, PL+US: Paid Leave for the U.S., SEIU, Stand for Children, Supermajority, The Arc of the United States, TIME’S UP Now, UltraViolet, United for Respect, United State of Women, We Demand More Coalition, Women’s March, and ZERO TO THREE.