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

Individual Food Drives Help Feed Hungry Tulsans

/in , /by The Arc

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

/in , , , , /by The Arc

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 Arc logo

The Arc Denounces Ruling on Use of Shock on Residents With Disabilities at Judge Rotenberg Educational Center

/in /by Pam Katz

In a stunning reversal, the U.S. Court of Appeals for the D.C. Circuit overturned the Food and Drug Administration’s ban on the use of electric shock devices that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues. The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to stop this practice.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC is the only place in the country that uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents, and alternative positive behavioral supports exist, and are proven more effective.

“In 2021, we should not still have to fight tooth and nail for people with disabilities to live free from fear and torture. The Arc denounces this ruling, as it strips dignity away from those living at this facility and threatens the civil rights of all people with disabilities. We will continue to fight for the end of this abusive practice,” said Peter Berns, CEO, The Arc.

A mother, father, and two adult sons stand smiling with their arms around each other. They are indoors and have nametags and business clothes on.

The Social Security Law That Keeps Parents Awake at Night

/in , , /by Pam Katz

By Micki, Grassroots Advocate

My husband and I consider ourselves to be informed parents. When our twin sons Zach and KC were diagnosed with intellectual disability in infancy, we tried to learn all we could to be a good mom and dad. We attended educational programs, joined local organizations that focused on families like ours, and did what we thought was best for our sons.

When they reached the age of 18, we were advised to apply for Supplemental Security Income, a federal income program for those 18 and older who are blind, have a disability, or are aged and have very little income. That went without a hitch. A few years later, one of our sons received a letter from Social Security stating that because he had worked for several years in the community, his benefits would switch from SSI to SSDI, Social Security Disability Insurance, a program for those with disabilities who are part-time workers. He qualified because after graduating from high school, he started working as a front-end clerk/bagger at a supermarket. It has always been and because of our son’s disability, will always have to be, part-time work. He has continued to work in this position for 21 years. He is very proud of this achievement. Again, the switch from SSI to SSDI went without us having to complete any paperwork.

During the first few years that he worked, we were still figuring out how much work he could do. On occasion, the store manager wanted him to put in extra hours because another employee called in sick or didn’t show up to work. It was difficult for him to say no, even if he couldn’t really manage the work. We received a few letters from Social Security stating that he earned too much money when that happened. We spoke to someone from Social Security, but nothing was said about him losing out on higher benefits when his parents retired or passed away. Nor was anything explained to us about how much he could earn while still maintaining benefits. Since he continued to receive payments, we assumed the past problems were just that: in the past.

Foolish assumption.

Some 15 years later, in 2016, when my husband turned 66 and applied for Social Security, he requested that Zach and KC receive SSDI benefits as Disabled Adult Children (DAC) under his work record. DAC benefits would be far more generous than our sons’ own benefits because my husband worked for many more years and also earned more.  My husband and I were counting on these benefits to help our sons with their living expenses when we were no longer able to provide financial support. My husband was told that our son who was the front-end clerk would never be able to receive DAC benefits because he earned too much money a few times, occurrences that took place 14 and 15 years ago. Social Security sent us a document showing when his income was too high—it was seven times total, and each time was under $40.

What should we do? Everyone we spoke with was stumped, including attorneys who specialize in denied Social Security Disability applications. With much persistence, we eventually found someone who explained that the things our son had paid for to help him work, like the medication he took to help him focus or the costs of his job coach, could be used to offset the income that exceeded Social Security’s requirements. We learned these are called Impairment Work Related Expenses, IRWEs.

Even though we’d been told that throwing away backup documents from tax filings after seven years was safe, we never did. Luckily, we had the receipts showing those costs which filled a box large enough for a 10-ream case of paper. We took it to the local Social Security office and requested that they review the materials and reconsider our son’s denial of DAC. The Social Security employee was taken aback by the number of documents in the box. He said he wasn’t allowed to work overtime and had no idea how long it would take him to go through it all!

After several nerve-wracking months, we heard from Social Security. They reversed their decision. Our son was approved as a DAC!

There are many families like ours who had and/or continue to experience a similar nightmare. Many of our loved ones work part-time in jobs with fluctuating hours which results in income varying from one month to another. Countless families don’t know about IRWEs or understand the complex rules of Social Security. We are all understandably terrified of doing anything that might put our children’s future benefits in jeopardy. Some find it easier to have their family member not work at all, thereby isolating them from the community and depriving them of self-worth.

The current law is a huge disincentive to work and it’s just too complicated.

Our son is now living by himself in the community. Being self-sufficient means the world to him. His DAC benefits along with his limited earnings cover his expenses, such as rent, utilities, groceries, etc. Without the SSDI DAC benefits, he would no longer be able to live independently in the community.

Parents of adults with intellectual disabilities want the assurance that their loved ones will continue to have meaningful lives after they’re gone. Knowing that their adult children can work and maintain DAC benefits is one critical way of guaranteeing that—the law needs to change.

 

Find out how you can help Micki’s family and others in the same position.

Learn more and act now!

 

The United States Capitol Building

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

/in , , , , , /by Pam Katz

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.

The Arc logo

#CareCantWait: COVID-19 Recovery Must Include People With Disabilities, Families, and the Care Workforce

/in /by Pam Katz

By: Nicole Jorwic, Senior Director of Public Policy and Bethany Lilly, Senior Director of Income Policy

While legislators in Washington, DC debate what IS and IS NOT infrastructure, people with disabilities and their families are grappling with day to day life, and a system that did not have the infrastructure and staff to support them before COVID-19, and today is only worse.

#CareCantWait any longer.

Every day that passes without investing in the care infrastructure, is another day a person with a disability does not get the services that they need, another day of family members scrambling and juggling to fill in the gaps, and another day our country fails to seize the chance to build back better.

The pandemic has highlighted the gaping holes in the systems that support people with disabilities—a direct care workforce stretched to the breaking point by low wages, family caregivers choosing between their jobs and their loved ones, and people with disabilities trapped in poverty and in a life limiting their potential.

As conversations continue about where we can and cannot afford to make investments as a country, we cannot let the needs of people with disabilities, their family caregivers and the direct care workers who support them to get left behind. As the saying goes, if you make something work for people with disabilities, it works better for everyone. This is infinitely true when it comes to economic recovery. Congress must pass the Better Care Better Jobs Act that includes a desperately needed  $400 billion investment in home and community-based services (HCBS), a national paid family and medical leave program, and update decades-old rules that trap Supplement Security Income (SSI) beneficiaries in poverty. These are The Arc’s priorities as Congress turns to recovery.

Home Is in the Community, With the Services To Thrive

The Biden Administration already did propose a huge long-term investment in HCBS in the American Jobs Plan, also known as the infrastructure plan, and Congress followed suit with the introduction of the Better Care Better Jobs Act on June 24, 2021. The bill includes a $400 billion investment to build more access to home and community-based care and create over a million direct care jobs to support people with disabilities, and make those jobs better.  There cannot be an economic recovery for this workforce, one made up mostly by women of color, without an investment to raise wages and create more direct care jobs.

People with disabilities and aging adults rely on direct care workers to provide the supports and services that they need to live in their homes and communities, and family caregivers rely on that support to work themselves. Having a skilled, properly trained and fairly paid workforce is the lynchpin for success for so many people with disabilities to live the independent life that they choose, and in some cases in can literally mean life or death. The proposed $400 billion investment in HCBS would address those systemic problems—raising wages and expanding access that will lead to decreased waiting lists.

When the Better Care Better Jobs Act becomes law, the $400 billion investment will allow states to build infrastructure and capacity for service provision, with a well-paid workforce, and thereby supporting unpaid family caregivers who are filling the gaps for the system that currently leaves nearly one million people waiting.

Paid Leave for All

The Biden Administration has also recognized the need for a comprehensive national paid leave program and included it in the proposed American Families Plan. It would cover all family members, including siblings and grandparents, who might need to take time off to help support people with disabilities. During the pandemic, millions of family members had to juggle existing caregiving responsibilities, and often new or different ones because of program closures, with their work. Caregivers have been managing instability and interruptions in services for years. But the proposed national program would provide family caregivers with the job support they need to be there for their loved ones for the first time. We are working with Congress to turn this plan into legislation, that once again, will impact the lives of millions of people with disabilities and their families.

Improve the Supplemental Security Program

And in his campaign platform, President Biden recognized the importance of SSI for people with disabilities and the desperately needed fixes to a program that has not been updated in decades. He proposed increasing benefit levels to the Federal Poverty Level, asset limits, and income rules, in addition to eliminating harmful rules that prevent people with disabilities from getting married or help from family members. These long-overdue updates would provide the economic support that people with disabilities need without trapping them in poverty.

The infrastructure that supports people with disabilities has been and is crumbling—just like many of our roads and bridges. We have an opportunity to give direct care workers a raise, expand HCBS services, support family caregivers, and update SSI. Congress must take this opportunity. Our #CareCantWait any longer.

 Tell Congress #CareCantWait and to pass the Better Care Better Jobs Act now!

 

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Advocates Applaud Full Pardon of Neli Latson, a Young Black Man With Disabilities, After Decade of Injustice

/in , , , /by Pam Katz

After more than a decade of unjust prosecution and abuse in the criminal justice system, Neli Latson, a Black man with multiple disabilities, is finally a free man. Virginia Governor Ralph Northam granted Mr. Latson, 29, a full pardon late Monday.

A young man sits smiling on a white couch with white blinds in the background. He is wearing a black shirt with the yellow word "ARMY" on it.

Mr. Latson, who has autism and intellectual disability, now has the chance to live a satisfying and self-directed life in the community, free from burdensome, unfair restrictions and the constant threat of reincarceration, but unfortunately never free from the painful truth that Black people with disabilities live at a dangerous intersection of racial injustice and disability discrimination. Mr. Latson’s case, which began in 2010, galvanized disability rights activists, bringing national attention to overly aggressive and sometimes deadly policing, prosecution and sentencing practices and the horrifying mistreatment of people with disabilities in jails and prisons.

The Arc has been seeking justice for Mr. Latson for more than a decade. A coalition of nearly 50 advocacy groups and legislators sent a letter to Governor Northam in July 2020 calling for him to grant Mr. Latson a full pardon. With tremendous relief, we thank Governor Northam for issuing the well-deserved full pardon. And on today’s 22nd anniversary of the Supreme Court’s landmark Olmstead decision, we are even more deeply reminded that people with disabilities are members of the community – not to be shut away and restricted because of their disability.

In 2010, Mr. Latson was an 18-year-old special education student, waiting outside his neighborhood library in Stafford County, Virginia for it to open. Someone called the police reporting a “suspicious” Black male, possibly with a gun. Mr. Latson had committed no crime and was not armed. The resulting confrontation with a deputy resulted in injury to an officer when Mr. Latson understandably resisted being manhandled and physically restrained. This was the beginning of years of horrific abuse in the criminal justice system. Prosecutors refused to consider Mr. Latson’s disabilities, calling it a diagnosis of convenience and using “the R-word,” and rejected an offer of disability services as an alternative to incarceration. Instead, Mr. Latson was convicted, sentenced to ten years in prison and punished with long periods of solitary confinement, Taser shocks, and the use of a full-body restraint chair for hours on end for behaviors related to his disabilities.

Virginia and national disability advocates, including The Arc and Autistic Self Advocacy Network, urged then-Virginia Governor Terry McAuliffe to pardon Mr. Latson.  In 2015, with bipartisan support from state legislators, Governor McAuliffe granted a conditional pardon. Although this released Mr. Latson from prison, it required him to live in a restrictive residential setting and remain subject to criminal justice system supervision for ten years. The terms of the 2015 conditional pardon meant Mr. Latson could be sent back to jail at any time, causing constant anxiety. Today’s pardon from Governor Northam recognizes Mr. Latson’s success since 2015 and relieves him from that ongoing threat.

“Neli Latson has spent almost his entire adult life entangled in a legal system that criminalized his disability and race. We believe Governor Northam’s full pardon will end this painful chapter of Mr. Latson’s life so that he can move forward. However, it is important to acknowledge that this blatant injustice has caused devastating harm to Mr. Latson and his family. The Arc will always fight for the rights of people with intellectual and developmental disabilities in the criminal justice system and against the systemic racism that deepens the indignity. This moment proves that advocacy matters,” said Peter Berns, Chief Executive Officer of The Arc of the United States.

“Justice should never have been delayed for Neli,” said Tonya Milling, Executive Director of The Arc of Virginia. “Yet we are thrilled that his decade-long struggle has finally come to a conclusion, and he will now be able to move forward with all the numerous opportunities that he should have been able to experience all along.

“Archaic and biased systems continue to exist all around us – particularly for BIPOC and other marginalized individuals with intellectual and developmental disabilities. For many years, The Arc of Virginia has worked both independently and with a broader coalition of advocates, towards desperately-needed reforms in how intellectual and developmental disabilities are viewed and treated in the criminal justice system. In the years since Neli’s unjust conviction, we have seen steps of progress in legislative policy. One example is legislation recently signed into law, that specifies in Code that intellectual and developmental disabilities may be considered at various junctures and touch points of the court system – ensuring that all defendants can be provided every opportunity for fairness and justice throughout the process.

“It is impossible to undo all the harm that was caused to Neli, but Virginia can and must continue working to prevent future harm from being inflicted on individuals with intellectual and developmental disabilities and their families. The Arc is wholly committed to continuing our partnership with advocates and legislators, on measures that will ensure justice for all,” said Milling.

“We’re excited that after years of advocacy, Neli Latson will soon be free to engage with the community on his own terms. We recognize that the restrictions he was forced to follow – including isolation in institutional settings – functioned as a form of continued incarceration even after his release from prison. We’re very grateful to the many community members who fought for Neli by writing letters, making calls, and continuing their advocacy even after the initial pardon was issued,” said Sam Crane, Legal Director of Autistic Self Advocacy Network.

 

For more information, contact:

Kristin Wright, The Arc of the United States, wright@thearc.org or 202.617.3271

Tonya Milling, The Arc of Virginia, tmilling@thearcofva.org or 804-649-8481 x.101

Sam Crane, Autistic Self Advocacy Network, scrane@autisticadvocacy.org

A man and his son each kneel beside an air traffic controller, mimicking his outstretched hand signal. Behind them is the wing of a plane and a city skyline.

A Father’s Love: The Rewards of Disability

/in , /by Pam Katz

A father and adult son stand together, smiling, in front of a black train with green hills and mountains in the background. To the left of the train is a yellow building. Jose Velasco is thankful for the incredible journey of fatherhood. The father of two did not foresee the life he and his wife, Deya, and their son and daughter created, together. This Father’s Day, Jose reflects on nearly three decades of being a dad and how disability has rewarded his life in ways he had not imagined when the family began their autism journey. Each day of that journey, Jose has only wanted one thing.

“The single biggest thing we want is for our kids to be happy,” he said. “Seeing the resilience my son has demonstrated has been absolutely phenomenal. I’ve learned so much about kindness.”

Jose’s 27-year-old son is named in his father’s honor. Jose, Jr. is on the autism spectrum, a diagnosis that has presented challenges along the way, while instilling determination and a growing realization that disability does not minimize ability.

When asked to describe his best memories with his father, it is clear there are just too many. Jose, Sr. has always been there for his son.

“Where to begin … I think it goes all the way since I was born,” Jose, Jr. told The Arc. “He is the equivalent of my best life-long friend. We have done great things together, from flying on a biplane, to riding numerous trains (steam, diesel, old and new) to high-adventures in the Rocky Mountains, like hiking and white water rafting. Spending a lot of time together has been one of my favorites things, including various journeys around the U.S. and Mexico.”

Jose, Sr. is a member of The Arc of the United States Board of Directors. He is program director in the Business Process Intelligence organization of global software company SAP. He is also ambassador of the company’s Autism at Work program, which has provided more than 600 employment opportunities for people on the spectrum. But Jose is most proud of his title as dad.

“Seeing Jose, Jr. succeed, happy, and how he has inspired people,” he said describing the greatest rewards of being Jose’s father.

This spring, Jose, Jr. accomplished a major achievement. After several years of setting goals, persisting, and working hard, he graduated from Austin Community College earning an Associate of Applied Science degree in Computer Information Technology – Computer Programming – Software Testing Specialization.

“He worked so hard for that. He worked really, really hard,” said Jose, Sr. “It was a reward for my wife and me, but for him as well.”

“The equivalent of winning a race. It was two-year degree, it took me close to 7 years and it felt great to have finished something I started,” Jose, Jr. said with pride.

Jose, Sr. is a disability rights advocate not only for his son, but – for all. He joins The Arc and other advocates who are urgently calling on Congress to act to fund $400 billion for the Medicaid home and community-based service (HCBS) system, increase wages for the direct care workforce, and create more of these jobs.

For years, the service system that people with intellectual and developments disabilities and their families rely on, Medicaid, has needed an update. People are stuck on waiting lists, the direct care workforce is underpaid, and too often, unpaid family caregivers are filling in the gaps in service. The COVID-19 pandemic has magnified these problems and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities.

Jose, Sr. is hopeful this investment by Congress would help secure a life of opportunity and independence for his son in the future and the disability community as a whole.

“There are very high hopes from our IDD community for the HCBS investment to take place. Expanding access to services, the creation of direct care jobs, and an increase in wages are cornerstone elements of a sustainable platform to deliver quality services that so many people need.”

Being a father to a child with a disability has taught Jose many life lessons.

In high school, Jose, Jr. went out for the wrestling team. He fell in love with the sport but the skills didn’t come naturally. After several early elimination losses, Jose, Sr. and his wife felt heartbroken for their son and lovingly suggested that he help support the team as a student assistant. But, Jose, Jr. – determined – taught his parents a valuable lesson.

“He said ‘you guys don’t get it. I want to be a wrestler,’” Jose, Sr. explained.

Jose, Jr. started training and working out and it paid off.

“He won. The gym went crazy. It was the beginning for him of something special,” Jose, Sr. shared holding back tears.

It was in that moment Jose, Jr. decided he wanted to go to college.

Today, Jose, Jr. works for the Internal Revenue Service. He started a new position earlier this year and has risen to the challenges of the new role.

This Father’s Day, Jose, Jr. has this message for his dad:

“This is what I would put in a card for Father’s Day: Dad, all I want to say is thank you. Thank you for being my father, for raising me, teaching me, and protecting me.”

Like father, like son. Jose, Sr. is also thankful. The rewards of disability and fatherhood are immeasurable.

A man lays in a hospital bed as an out of focus doctor in the foreground holds a chart

The Arc’s Statement on the U.S. Supreme Court’s Ruling in California v. Texas

/in , , , , /by The Arc

“The Arc is relieved that the U.S. Supreme Court has once again upheld the Affordable Care Act (ACA) and today dismissed the latest attack on the law. The ACA is critical to the lives of people with disabilities and low-income Americans. Without it, millions of adults and children would lose their health coverage, or it would become unaffordable, during an unprecedented time of health risk and uncertainty, as well as economic instability.

“The importance of the ACA is underscored by the pandemic. The public health crisis is a glaring reminder of the inequities in health care and discrimination faced by people with disabilities, other groups that are marginalized, and people holding multiple marginalized identities.

“The Arc and our allies have fought relentlessly to defend the ACA from these repeated attempts to undermine the law and we will continue to fight to preserve this lifeline for people with disabilities. In 2020, The Arc, with a coalition of disability and civil rights organizations, joined an amicus brief filed in the U.S. Supreme Court urging the court to uphold the ACA in its entirety. The Arc also provided an amicus brief in support of upholding the law before the Fifth Circuit Court of Appeals in 2019.

“This uplifting moment is about the millions of people with disabilities, their families, and the direct support workforce that rely on the ACA for access to health coverage for preventative care, to maintain good health, and secure vital medical treatment. This moment is about protecting them from discrimination. The lives of people with disabilities have value,” said Peter Berns, CEO of The Arc of the United States.

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

/in , , /by Pam Katz

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.