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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.

September 11 Day of Service Grantees Give Back and Help Prepare Their Communities

This past September marked the 20th anniversary of the September 11 attacks. To honor all who were lost, The Arc joined forces with local chapters of The Arc and other community organizations to develop inclusive volunteer projects centered around the September 11 National Day of Service and Remembrance (9/11 Day).

These projects aimed to strengthen and prepare communities for all types of emergencies. Their goal was also to challenge the perception that individuals with disabilities are only service recipients by demonstrating that volunteers with and without disabilities can and do serve their communities side-by-side.

The Arc’s 2021 9/11 Day grantees spent much of the past year preparing for their keynote September 11 weekend events. This year’s grantees included Egyptian Area Agency on Aging, Ridge Area Arc, The Arc of Hanover, The Arc Central Chesapeake Region, Athletes for Hope, Greater Susquehanna Valley United Way, The Arc of Palm Beach County, The Arc Nature Coast, and The Arc Tennessee.

These dedicated organizations served their communities in a variety of ways, including:

  • Hosting community-wide artistic events, which provided a space for community members to create collaborative art that honors those lost on 9/11 and promotes collective strength, resiliency, and remembrance
  • Designing handmade cards of appreciation for local first responders
  • Assembling and distributing emergency kits to local families
  • Distributing emergency preparedness information and templates to community members
  • Installing fire alarms for homeowners living in high-risk neighborhoods

Together, our grantees recruited over 1,000 volunteers, who spent close to 5,000 hours leading a variety of emergency planning activities that benefited over 4,100 individuals.

We would love for your organization to join us next year by building an emergency preparedness volunteer program in your community. We are currently accepting grant applications for the 2022 September 11 National Day of Service and Remembrance – and the deadline to apply is November 4. Learn more and apply here!

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Federal Court Blocks Iowa’s Law Banning Masking Requirements in Schools

DES MOINES, Iowa — A federal district court today blocked Iowa’s law prohibiting schools from requiring masks. The court ruled that the law violates the civil rights of children with disabilities, including children with underlying conditions, who are more vulnerable to severe illness or death as a result of COVID-19.

The decision makes clear that children have a right under Title II of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act to equal access to their educations, which for some children with underlying conditions and disabilities, requires that schools implement universal masking requirements.

The district court recognized that “forcing children to bear the brunt of societal discord is ‘illogical and unjust’” and cited data showing that “the current level of the delta variant in Iowa has increased the infection rate and severity of infection. Some public schools in Iowa are experiencing COVID-19 infection rates at upwards of 60 percent that of last year’s total for the entire school year.” The court also cited data showing that the number of children hospitalized due to COVID-19 is also on the rise.

The decision comes in a case brought by the American Civil Liberties Union, ACLU of Iowa, Disability Rights Iowa, The Arc of the United States, and law firms Arnold & Porter and Duff Law Firm, P.L.C. on behalf of The Arc of Iowa and 11 parents of children with disabilities.

The following statements are from:

Shira Wakschlag, Senior Director of Legal Advocacy and General Counsel, The Arc of the United States:

“The court is making it clear that students with disabilities have the right to go to school safely during this pandemic. The Arc will continue fighting to ensure that students with disabilities are able to attend their neighborhood schools alongside their peers without disabilities without putting their health and their lives at risk.”

Rita Bettis Austen, legal director of the ACLU of Iowa:

“We are grateful to the district court for blocking this dangerous law, which put vulnerable kids in harm’s way and violated their civil rights in education. We are relieved that schools across the state will now be able to protect those kids as required by federal law. No parent should be asked to choose between the safety and health of their child and their child’s ability to go to school, but that’s exactly the position that this law put parents across Iowa in.”

Susan Mizner, director of the ACLU’s Disability Rights Program:

“This is a huge victory for our plaintiffs and all parents of children with disabilities who have been forced to choose between protecting the health of their children and ensuring they receive an education alongside their peers. This decision opens the door for schools across Iowa to take basic public health measures to protect their students. It also should send a message to other states that they cannot put politics above the rights and safety of students with disabilities. Disability rights laws were passed precisely for this situation – in which children with disabilities health and education would be sacrificed for the convenience of the majority. Banning the possibility that schools may require masks — in the middle of a pandemic — discriminates against school children with disabilities. All students with disabilities should be able to attend school safely, as federal disability rights laws guarantee.”

Catherine E. Johnson, executive director, Disability Rights Iowa:

“The order entered today restores our students’ with disabilities long-held civil rights of equal access to their education and full inclusion with their general education peers in the school curriculum and all other activities and programs offered by their school. Today is a monumental day for all plaintiffs, as well as all Iowans forced to choose between sacrificing their child’s health or education opportunities. Effective today, parents no longer have to make this impossible choice, their children are entitled to both.”

Photos and videos of some clients, attorneys, and organizational logos available here: https://drive.google.com/drive/folders/1-XIhBS5ZyNVRRh9lENyhqMbJi5PLqqky

More details about this case are here: https://www.aclu.org/press-releases/lawsuit-challenges-iowa-law-banning-schools-requiring-masks

The decision is here: https://www.aclu.org/legal-document/arc-iowa-v-reynolds-order-granting-temporary-restraining-order

This statement is here: https://www.aclu.org/press-releases/federal-court-blocks-iowas-law-banning-masking-requirements-schools

 

a young boy in a hospital bed with medical equipment on his face. He is smiling.

Surviving on a GoFundMe Campaign: How a Hospital Stay Without Paid Leave Forced One Family Into a Crisis No One Should Face

A selfie of a young boy with his father. They are laying in a hospital bed together and the son has a hospital gown on and medical equipment on his face and neck.

For Kerri, Ken, and their family, Father’s Day weekend 2019 started out as planned—peaceful and filled with quality family time. But early Saturday morning, Kerri and Ken awoke to their 17-year-old son, Yosh, screaming in pain. His stomach had swollen so badly overnight that it looked like a beach ball.

They were terrified for their son. Yosh, who has Down syndrome and autism, is not able to express himself well with verbal language and struggles to understand what is going on around him. However, even without words to explain what he was experiencing, it was clear his pain was severe.

Over the next several days, Yosh was placed in an induced coma as the hospital staff performed tests—and unfortunately found blockages throughout his intestines. For Kerri and Ken, the news was devastating. Yosh had never had any stomach issues. They grappled with trying to understand what was happening—all the while, never leaving Yosh’s side. They barely left the hospital as Yosh received treatment, taking turns watching him while the other rested.

They ended up at their local hospital, where Yosh is considered a VIP because of his frequent visitor status and is well-known to the hospital staff. But even as familiar with Yosh as the hospital staff are, Kerri and Ken know him best. To diagnose Yosh, Kerri says “you have to look for flying hippos with pink and purple spots” and she and Ken knew they needed to be there to help.

However, as the days turned to weeks, Kerri and Ken had to deal with something no parent should have to imagine: choosing between being with your seriously ill child and working.

Kerri and Ken are self-employed. While New Jersey has paid leave, it only covers workers who receive W2s, so both Kerri and Ken were left without help.

Kerri and Ken lived with a fear no parent should have to experience: that not only could each day be their son’s last, but that they would also lose their home in the process.

While they knew that Yosh’s Medicaid would pay for his hospital bills, without income coming in, they were terrified they would have no place to return to when the hospital stay ended. It was the scariest time of their lives. Both still experience post-traumatic stress from the situation, and Kerri shakes every time she passes the hospital.

A selfie image of a mom and her teenage son. She is wearing a white t shirt, green lanyard, glasses, and a bandana. He is wearing a yellow shirt and has medical tape and equipment on his face and neck.

While they were in the hospital, a GoFundMe campaign was set up for Yosh and his parents. Family, friends, friends of friends, and strangers donated to Kerri, Ken, and their family that summer.

And, through their help, they were able to pay for their mortgage, utilities, and other essentials.

Kerri and Ken are so grateful for the generosity of others—but also angry that when they were at their lowest point, there were no resources for their family. In addition to advocating for their son, Kerri advocates for and with other families in her work.

“There are so many families that are out there that don’t even know there are resources for them… When a family is in crisis, there needs to be some place for them to go and call in someone who has the knowledge and resources to help them.”

Kerri and Ken don’t want anyone else to ever go through what they did. Paid leave shouldn’t depend on the kind of tax form you get from your job. And no one should have to choose between being there for loved ones and their homes and livelihood.

Learn more and act now to help families like Kerri and Ken’s nationwide.

Visit thearc.org/covid19recovery to learn more.

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The Arc Celebrates Senate Passage of the $3.5 Trillion Budget Resolution to Invest in Crumbling Care Infrastructure

Washington, D.C. – The Arc is encouraged that the U.S. Senate took an important step in favor of respecting the human dignity of people with disabilities and aging adults. Wednesday, the Senate passed a $3.5 trillion budget resolution triggering the start of the reconciliation process.

The vote paves the way for Congress to pass a comprehensive spending package that would provide generational investments in our nation’s crumbling care infrastructure and groundbreaking benefits that could reshape the future for millions of people with intellectual and developmental disabilities, American families and their children.

“The historic investment in Medicaid Home and Community-Based Services (HCBS) included in the budget resolution will be transformative for a system that currently leaves almost one million people waiting for services all over this country,” said Peter Berns, Chief Executive Officer of The Arc of the United States. “People with disabilities and aging adults, have struggled, well before the pandemic, with a system that does not include the resources to support them in their homes and communities. The infrastructure of care for these groups currently includes the labor of unpaid family caregivers who fill in the gaps in the service system, and a paid workforce that is not paid a family sustaining wage. The $400 billion included to both expand access to HCBS and raise wages for the direct care workforce will shore up the care infrastructure so that people with disabilities can live independently, aging adults can age in place, and family caregivers can return to the workforce.”

The Arc also strongly supports the inclusion of a national paid leave program and hope to see other priorities such as long-overdue improvements to the Supplemental Security Income program included in the final package.

Close up of a person holding a small leather wallet in their left hand and pulling out a folded dollar bill

Stuck in Time: SSI Desperately Needs Updating

By: Bethany Lilly

My parents celebrated their golden wedding anniversary last year. Fifty years is a long time, and so much has changed—the internet, cell phones, self-driving cars, and we’ve seen so many disability rights victories. Next year, the Supplemental Security Income (SSI) program will also turn 50. But this milestone for SSI is almost disappointing because in those 50 years, the rules of SSI have barely changed. Passed in 1972, SSI was designed to keep the lowest income adults and children with disabilities and older adults from living in poverty. But Congress has ignored this crucial lifeline and failed to update it, instead leaving people with disabilities and older adults trapped in deep poverty, for fear of going over the limits and losing benefits. Rules that haven’t been updated in a half century govern how much money people who rely on SSI can earn, how married couples who receive the benefit are treated by the federal government, the amount of income the program provides, and how much help family and friends are allowed to give to loved ones on SSI. Rules about how much people can save haven’t been updated for almost 40 years!

SSI is supposed to fill in the gaps of other government support programs, paying for housing and other expenses that aren’t covered by Medicaid. But the current rules make that almost impossible. If someone is relying on SSI, the cost of renting a one-bedroom apartment almost anywhere in this country will consume more than the maximum monthly SSI payment of $794, leaving practically nothing for other expenses like groceries and other necessities. And limiting savings to only $2,000 means that many people cannot save enough to even move into an apartment or house. People can end up trapped in institutional settings, with no ability to afford an alternative. Like so many other parts of the disability service system, SSI is crucial infrastructure that is crumbling due to decades of neglect.

Nothing has made that clearer than the pandemic. With a maximum monthly SSI benefit of $794, people with disabilities are struggling to afford the necessities of pandemic life like masks, grocery delivery, and increased prices for so many basic goods. Restricted from saving more than $2,000, no SSI recipient could rely on their savings to get them through the past 17 months and the uncertainty that is ahead during this ongoing pandemic. Accepting help from family, friends, or mutual aid means a benefit cut. And because of marriage penalties, couples face an even harsher financial reality. Even the government’s COVID relief efforts created problems–stimulus checks and unemployment insurance expansions created eligibility issues because the systems used to implement these rules are equally archaic, unable to adjust to new benefits. For the millions of people with disabilities who are eligible for Medicaid because they are eligible for SSI, this was not only an issue with income security, but also put their access to health care and home and community-based services (HCBS) at risk.

Just as the pandemic highlights the need to expand HCBS and finally address the workforce crisis for direct care workers, it also shows us that the program that is supposed to pay for everything else is trapping people with disabilities in poverty. Enough is enough. We must fix these archaic SSI rules.

President Biden acknowledge the need for change during the presidential campaign, calling for five major reforms to the SSI system:

1) increasing benefits to at least the federal poverty line

2) increasing income limits to encourage work

3) eliminating harmful rules penalizing help from family and friends

4) eliminating marriage penalties

5) increasing asset limits

Any one of these changes would dramatically improve the lives of the 8 million people who rely on SSI, including almost 1 million children with disabilities. It would help ensure that people with disabilities can live with their families and friends in their own communities, with the supports they need.

We have a rare opportunity – right now – to fix the crumbling disability service system by fixing SSI, expanding HCBS, and passing a national paid leave program. We must act on this opportunity!

#CareCantWait

50 years is a long time. Just ask my parents.

MLK Day logo that says "MLK Day of Service - Corporation for National and Community Service"

Individual Food Drives Help Feed Hungry Tulsans

As The Arc of Oklahoma watched COVID-19 infections rise in their state in the second half of 2020, they hoped restrictions would decrease in time for their MLK Day of Service event in January 2021. But as the year progressed and COVID cases continued their upward trend, the organization began laying the groundwork to transition their in-person event into a virtual one. Regardless of the format, the goal remained the same: make a notable dent in Tulsa’s 15.8% food insecure population.

MLK Day of Service volunteers

Interested in hosting your own MLK Day of Service event? Apply for a grant from The Arc and AmeriCorps to help organize your 2022 service project, give back to your community, and promote the inclusion of people with disabilities!

The Arc of Oklahoma’s Board of Directors, members of their Self-Advocacy Program, and community partners ultimately decided that individual food drives would maintain the integrity of the event while preserving the health and safety of all involved. So, “Individual Food Drive Hosts” set to work, collecting food items from families, neighbors, church members, and co-workers. Hosts then donated the items to their chosen pantry. By the end of March, 60 volunteers had administered individual food drives, serving nearly 430 of their fellow Tulsans.

The recipients of the individual food drives were not the only beneficiaries of the program. Volunteers from The Arc of Oklahoma’s Self-Advocacy Program also reaped benefits, growing professionally and personally. The majority of the volunteers have an intellectual and/or developmental disability (IDD) and experience difficulty communicating verbally and in social situations. Service projects such as these allow people with IDD to play a vital role in their communities though volunteering. As an added bonus, these individuals gain access to a welcoming and safe environment to practice social interactions and build the confidence needed to speak up for themselves and others.

Although the format of The Arc of Oklahoma’s 2021 MLK Day of Service event changed from their original proposal, it was a wonderful kick-off to a year of service, just as Dr. King had envisioned. Subsequent activities, such as the organization’s recent drive-through food distribution, have furthered the goal of alleviating hunger in Tulsa.

As The Arc of Oklahoma’s service events continue into the summer and fall, the organization’s true impact on food insecurity has yet to be seen. But if the following statement from a family who benefited from the food drive is any indication, the organization’s impact promises to be significant!

“I want to thank you with all my heart for how much you have helped us! You are wonderful people. Thank you for being so generous. Thank you to everyone who has helped us through you. You are angels to our family, and we are fortunate to know you!”

The Arc logo

The Arc and Coalition of Disability and Civil Rights Organizations Urge Court to Allow Britney Spears to Select Her Own Attorney in Conservatorship Case

Washington, D.C. – The Arc, with a coalition of 25 civil and disability rights organizations, joined an amicus brief filed Monday by the American Civil Liberties Union (ACLU) and the ACLU Foundation of Southern California in support of Britney Spears’ right to select her own attorney for her conservatorship proceedings. The brief also urges the Superior Court of Los Angeles County to ensure Ms. Spears has access to assistance and tools to select her attorney, including Supported Decision-Making.

Ms. Spears is currently under a probate conservatorship and has been represented by a court-appointed attorney for most or all of the 13-year duration of her conservatorship. On June 23, Ms. Spears told the court that she wishes to choose her own attorney. On July 6, Ms. Spears’ court-appointed attorney asked to resign from her conservatorship case.

Often in conservatorships, judges appoint a lawyer to represent a conservatee without allowing the person under conservatorship any say in this decision. The amicus brief argues that the right to choose one’s own attorney is a core element of the Sixth Amendment right to counsel, and people under a conservatorship should be able to retain this right. The brief also provides background to the court on how Supported Decision-Making could be an effective tool for Ms. Spears to use in choosing her own representation.

Supported decision-making allows a person to retain their legal rights while getting support with decision-making from those they choose and trust. Supported Decision-Making does not require court involvement and can be combined with other legal tools, such as powers of attorney and advance health care directives, that promote self-determination and autonomy.

“For many years, The Arc has advocated for the rights of people with intellectual and developmental disabilities to participate to the maximum extent possible in making and executing decisions about themselves and to ensure their civil and human rights are retained and enforced, regardless of conservatorship or guardianship status,” said Peter Berns, CEO of The Arc. “Ms. Spears has the right to self-determination in selecting her own attorney and The Arc will continue to advocate to ensure such rights—for Ms. Spears and the disability community more broadly—are protected in the courts.”

The United States Capitol Building

Better Care Better Jobs Act Will Make Huge Investment in Disability Services

The system that provides supports and services for people with intellectual and developmental disabilities (IDD) and their families has fallen far short of their needs for decades, and the COVID-19 pandemic exposed and worsened this reality.

The Better Care Better Jobs Act (BCBJA) introduced today will make a huge investment necessary to change disability services into the future. This bill puts into motion the proposals that were included in President Biden’s American Jobs Plan, which prioritizes the crumbling care infrastructure in this country and recognizes the importance of fixing it and building back for the future.

“Every day, people with disabilities are waiting for their lives to start and often going without the supports they need to achieve their goals. Families that want a different life than an institution or nursing home are forced to navigate a patchwork system of supports with waits and no guarantees. Family members are often forced to either quit or limit their job choices to provide care due to lack of services. And the direct care workforce is underpaid and undervalued.

“We are desperately overdue for a huge investment in disability services. The Better Care Better Jobs Act introduced today will be a game-changer and must be enacted quickly for the disability community to be a part of our economic recovery from this disastrous pandemic,” said Peter Berns, CEO, The Arc.

When the BCBJA becomes law, it will provide huge funding enhancements to states which focus on improving and expanding their Medicaid home and community-based services (HCBS) delivery system. The bill would provide funding to expand access to services for people who are currently on waiting lists for these vital services, and create more and better direct care jobs for the paid workforce that provides these services.

Learn more about how HCBS are vitally important to the lives of people with IDD and their families.

Three people, two standing and one seated with a blanket over them. The two women standing in the back have face masks on.

One Family’s Story of Moving From an Institution to the Community

We Were Afraid of Change, But The Arc Was There

When Amy was born in 1967, her family was told that she needed to live in an institution to get the medical care and services she needed due to her inability to speak and move independently. Her family followed doctor’s orders and placed in her an institution in California, where the family lived at the time. All her sister, Laurie, recalls of the institution is her sister’s tears. She cried every time the family left from a visit.

Amy lived in institutions for many years—but she and her family never could have imagined what waited for them on the other end of her time there.

 

Life at the Northern Virginia Training Center

The family moved to Virginia in 1975. Amy and Laurie’s parents found eight-year-old Amy a place in the Northern Virginia Training Center—another institution. For many years, the institution was all that Amy, Laurie, and their family ever knew. Amy appeared very happy there. As a child and teenager, Amy attended a day program in the local school system, and there were dentists and doctors on the campus of the institution. Amy and Laurie’s family would even invite staff from the institution to join them for family dinners. As an adult, Amy began to seem a bit sad when she aged out of the services available by the school system. Her post-high school activities included a day program where she crushed cans.

Amy’s family was dedicated to Amy and making sure she could get out and do things she liked. However, the institution did not have the resources to take Amy and the other residents off the institution campus and they did not even have a lift that could help them move Amy around. So, if Amy wanted to go somewhere, her family had to take her. As Laurie and their parents got older, they weren’t as able to do this and it really limited Amy’s ability to get out and go shopping or see movies. Similarly, when Amy would get sick or have surgery, Amy and Laurie’s parents would have to stay with her in the hospital because there was not enough staff from the institution to provide care, and the hospital staff were not trained to take care of her properly.

When Virginia decided to close the institution in 2016, Amy and Laurie’s family were one of many who would fight for the institution to remain open—firmly committed to the center that had served their family for so many years. This at times put Amy and Laurie’s family and other supporters of the institution in direct conflict with The Arc and its local chapters, which were powerful advocates to expand community-living supports and end the use of institutions.

However, Amy and Laurie’s family could read the writing on the wall and began talking with The Arc about what life could look like next for Amy.

 

The Arc: New Freedom

Four people in a selfie. Three are in the background of the photo wearing black masks and shields, and one person is in the front, smiling without a mask. They have short brown hair.

Laurie was working for an elected official in Virginia and knew the leadership at her local chapter of The Arc.

While they had different opinions, The Arc of Greater Prince William County’s leader, Karen Smith, was very respectful to Amy and Laurie’s family. Karen learned about Amy’s unique needs and preferences and helped build a group home setting that would work for her. Through it all, The Arc never gave up on Amy and Laurie’s family and made sure to reassure them that Amy would get the help she needed in the community.

The transition went smoother than the family expected. Amy’s group home was near Laurie and her parents, and the family could visit Amy as much as they wanted.

Most importantly, there were huge and wonderful changes for Amy.

Laurie and her parents worried at first about Amy having her own room. In the institution, Amy shared a room with the same roommate for nearly 30 years. They thought she would be scared and would want them to stay overnight with her. Laurie had even packed an overnight bag just in case Amy needed her. However, Amy loved having her own space—and decorating her own room. According to Laurie, “she has more new comforters than I have ever had in a lifetime.” Amy also enjoys the atmosphere of the home. She is treated as an individual, lives in a beautiful neighborhood with a garden out front to explore, and sits on the screened porch to enjoy the view of the woods behind her home.

Amy is also able to go out on her own and do things she wants to with Laurie or the group home staff. Amy, a housemate, and her staff go to shows together and her group home staff take her out to shop at the mall and go to the movies regularly. Amy also attends a day program for adults in the community that she is always very excited for. The day program is also only a mile from Laurie’s home and Laurie is welcome to visit her sister at any time. According to Laurie, “it is really nice to be able to pop in and say ‘hey, how’s it going’ and hang out with her.”

In this past year, due to the COVID-19 pandemic, life has changed again for Amy and Laurie. However, even in a terrifying pandemic, the group home staff have still helped Amy do things that matter to her. Though she has not been able to get out as much, Amy has been using her iPad and phone extensively. Laurie regularly gets videos of Amy where she makes faces and expresses to Laurie how she is really feeling. Laurie can send gifts to Amy to keep her cheerful and in early April 2021, Laurie and Amy were finally able to reconnect in person. They are hoping to take a shopping trip soon!

 

Advice for Others on Embracing Change and the Possibilities it Brings

We asked Laurie what she would want to tell others about her family’s experience over the years. She said that “there is always a fear of change,”— but in that change is a possibility for growth you may not have imagined before.

“I can’t emphasize enough how much The Arc of Greater Prince William County was there to make sure that people are happy. They go out of their way to make sure that people get what they need, like getting a much-needed haircut in the pandemic. The people there put a real personal stamp on everything they do. I just want to make sure that they get all the credit the deserve—especially the group home manager, who is wonderful.”

 

How You Can Help

There are still institutions open today in 36 states across the United States. For many, the institution is all they know– and they and their families may fear what change means for them.

There may be fear from past failed attempts at community living or concerns that people with more support needs can’t be safe and healthy in the community. But that fear can be overcome with the right level of supports and a caring community-based disability service provider, like The Arc of Greater Prince William County and The Arc’s chapter network.

What we know is that most people with disabilities and their families do want access to a life in the community, no matter the level of supports necessary to make that happen. But when they try to find what they need, too often the system fails them and makes them wait for services. This must change.

 

Join us to help make sure that everyone can get the support that they need in their community!

Visit thearc.org/MedicaidCantWait to learn more and see how to advocate with us.