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.

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The Arc Receives Funding from Verizon to Expand Emergency Preparedness Across the U.S.

/in , , /by Pam Katz

The Arc of the United States is thrilled to announce it has received an award from Verizon to implement the Building Community Resilience through Inclusive Disaster Preparedness program in 2021. Through this initiative, we will award chapters of The Arc and community organizations grants to offer online volunteer opportunities that focus on the importance of emergency-preparedness and ensuring that people with disabilities and their perspectives are incorporated in emergency-preparedness plans from the beginning.

Organizations will engage in a variety of virtual volunteering activities, such as creating disaster kits, developing emergency plans and important documents to be distributed, training, and much more. Grantee activities will be featured on Verizon’s employee volunteering platform, enabling   Verizon employees the opportunity to serve their communities alongside people with disabilities. A key piece of each grantees’ plan will be to host a virtual volunteering opportunity on the 20th anniversary of 9/11, a day now dedicated to volunteering and giving back to communities.

“People with disabilities and their needs are frequently overlooked when it comes to emergency planning.  With this additional funding from Verizon, The Arc will be able to continue changing that narrative and expand upon the emergency preparedness work we began last year,” said Peter Berns, CEO of The Arc.

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No One Should Have to Live Like This: Steve’s Nine-Year Wait for Freedom

/in , , /by Pam Katz

Thousands of people with disabilities in the U.S. use Medicaid to get the supports and services they need to live and be healthy every day. But, people with disabilities must often wait several years to get access to the type of supports they want and need in their own homes. Many are forced into nursing homes and institutions to get the services they need.

But this comes at a critical cost: freedom.

Meet Steve

Steve has cerebal palsy. For most of his young life, and like many people with disabilities, he lived with his mom. When Steve was only 22 years old, his mom became very ill. Because she could no longer provide the supports he needed, Steve was forced to move into a nursing home to get the care he could no longer receive in his childhood home. Even though Steve knew he could make it in the community with the right supports, he was forced to make this move. This was because his family was concerned about his well-being if he lived independently, and because they feared the appropriate supports were not available to him.

The nursing home put Steve in the long-term Alzheimer’s unit with people who were often in their 80s and 90s. This was not Steve’s choice. Steve was placed in an available bed where all long-term residents were put.

Steve hated living in the nursing home and often felt like the care he got from staff was lacking.

“I had to wait an hour for someone to respond when I asked for help. Sometimes, the nurses would come in and turn the call light off instead of helping me. I was always the last to be fed. When I needed to go to the bathroom, I would wheel my chair out to the hall and tell the staff—but they would walk away. I had to fight with the nurse to get medications. If I told someone I wasn’t getting taken care of, the care would be worse because the staff would get mad at me. At night, I couldn’t sleep because the other residents were screaming or because staff were buffing the floor.”

After a year in the nursing home, Steve’s case manager got him on the waiting list for Medicaid home and community-based services (HCBS). Access to HCBS would allow Steve to move out of the nursing home and get the help he needed in his own home in the community.

“I spent eight years on the waiting list… Every year, I got a letter about where I was on the waiting list. Every time I got that letter, I was so discouraged and disappointed because it felt like my name was not coming up. And, I thought that I would never get out.”

Finally, after nine years in the nursing home, Steve’s name did come up, and he got out.

“On my last day in the nursing home, I went to the administrator and told her, ‘thank you for kicking me out—you made my wish come true.’ When I got out and got [HCBS services], I finally had the freedom to do what I wanted to do… I could eat when and what I wanted—and the food was actually warm. I could sleep better at night. I could use the bathroom when I needed to. I could go out with friends without having to come back at a certain time. I did not have to fight nurses to get my medication. I had freedom—and a life like yours.”

Now, Steve lives independently in his own home in the community, with support from paid caregivers. While he does still experience challenges with things like getting transportation services, finding safe and affordable housing, and finding paid caregivers, he believes he is where he belongs.

Steve’s nine years in a nursing home profoundly impacted him and he wants to make sure no one has to live the way he had to.

“Just because we are disabled, [doesn’t mean we don’t deserve] equal rights—we do not belong in an institution. We should have the same opportunities as anyone else. Everyone should get the help they need in their home, [and everyone should have the right to live the life they want].”

To others with disabilities, Steve offers these words of encouragement.

“People will say there are no other options for you in your area besides an institution…Do your research. Have a backbone, be tenacious, and don’t ever give up. You are always going to have roadblocks—but you have to find your way past them. You can do it.”

Check out this video to learn more about the role of Medicaid HCBS and Supplemental Security Income in Steve’s and other advocates’ lives.

This injustice must end.

No one should have to give up their freedom to get the services they need. The Arc works every day:

  • To make sure people can get the Medicaid HCBS they need
  • To end long waiting lists for HCBS services
  • To close institutions, which still exist in 36 states nationwide

Join us! Visit thearc.org/MedicaidCantWait to learn more and see how to advocate for HCBS with us.

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The Arc Encouraged by Proposal for Huge Investment in Disability Services and Direct Care Workers

/in , , , , , /by The Arc

Washington, D.C. – For years, the service system that people with intellectual and development disabilities (IDD) and their families rely on has fallen far short of meeting their needs. The COVID-19 pandemic has magnified this problem and exposed the cracks and gaps in the care infrastructure when it comes to supporting people with disabilities. The Arc is encouraged by the Biden Administration’s announcement today that The American Jobs Plan includes a $400 billion investment to support and grow the direct care workforce, expand service delivery and eliminate waiting lists so that people with disabilities and unpaid family caregivers can return to the economy. This investment is long overdue, and like crumbling roads and bridges, the Administration recognizes that the home and community-based service (HCBS) system, a central part of the care infrastructure, needs and deserves the same critical investments. Now, Congress must act.

Growing the direct care workforce, expanding access to services, and supporting family caregivers are key to our economic recovery. The Administration’s plan to provide more funding for HCBS, create jobs and increase wages and benefits for direct care workers addresses the rising level of need for these services. It also targets the longstanding inequities experienced by the direct care workforce that were made worse by the pandemic. These direct care workers are mostly women of color; they are denied a living wage due to underfunding of the Medicaid HCBS system that pays their wages. A well paid, well trained workforce that can grow with and meet the increasing need is critical to recovery and to providing people with disabilities and their families quality supports and services they need and want to receive in their homes and community. The Arc was also thrilled to see the plan include a permanent reauthorization of the Money Follows the Person program, a Federal program that supports people with disabilities and aging adults to move out of large congregate settings and back to their homes and communities. The Arc has been advocating for all of these advances for years.

We are pleased with the Administration’s proposal for this major investment in and recognition of the value of people with disabilities, their families, and the direct care workforce. Congress must now act to make this important investment in the service delivery system and the direct care workforce a reality by including these provisions in any new infrastructure and recovery legislation.

“As the largest disability rights organization in the country, The Arc is pleased to see the value of people with disabilities, family caregivers, and direct support professionals recognized and upheld in the Administration’s bold American Jobs Plan.  The proposal is a welcome first step and we will not rest until the needs of people with IDD and the direct support workforce are fully addressed,” said Peter Berns, CEO of The Arc of the United States.

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Part One: For Jud, Chris, and Millions of People With Disabilities – a Bill 70 Years in the Making Has Arrived

/in , , , , /by Pam Katz

By: Marty Ford, Senior Advisor, The Arc

The Arc of the United States was founded over 70 years ago by families like mine who wanted their family members with intellectual and developmental disabilities included in every aspect of life in their homes and communities. Congress has finally proposed a bill, the Home and Community-Based Services Access Act (HAA), that would provide the resources to turn this foundational goal into a reality and ensure that home and community-based services (HCBS) are there to help ALL people with disabilities live their lives in their communities, with their friends and family.

The fuel for change is always the personal experience. In the first of a two-part blog series, Marty Ford, Senior Advisor at The Arc, shares her perspective about the journey to this moment.

Marty: For me, making community life a reality has been a life-long goal. I was three years old in 1956 when my brother Jud was born with profound IDD, including autism, into a large family. Little was known at the time about how to serve someone with his level of service needs. Even though my mother was a practicing pediatrician, my parents, as well as others at the time, were learning through personal experience and they were determined that Jud would be part of our family and community life.

There were no supports available outside of the public schools and the schools were not prepared to serve children with high levels of need. When my brother was kicked out of school at a very young age (before the federal law ensuring a right to education) for his disability-related behaviors, he had nowhere to go except home all day with a very loving caregiver. He missed the routines and rhythms of school and had a hard time staying home while everyone else went to work or school daily. He waited all day for the staggered returns of kids and parents, dinner, and then his beloved ride to the drugstore for a Coke and a long drive listening to rock and roll and beach music on the radio. Jud also had daily trips to the Post Office with our Dad to pick up the mail for his business, trips to the barbershop, church on Sundays, other local gathering places, and a house full of our friends and exchange students who lived with us at various times. He loved all the interaction and was known all over town.

Sadly, as each of his older siblings began to leave home for college, military service, or otherwise, Jud’s physical size and his inability to control his frustrations and emotions became dangerous for our aging parents. After much searching and trying many approaches, the only available service for someone with his needs was the state institutional system. This was devastating for Jud, for our whole family, and for the many friends who had known him over the years. Jud suffered greatly from the travel distance from his family (even though we visited regularly), home and hometown, friends, and routines. And while there were some wonderful staff who supported him in his new location, we were horrified to learn that he also suffered some terrible abuses– the kinds of things that can be hidden when people who are unable to communicate or be understood cannot tell others what is happening to them. My father found that Jud had been burned with cigarettes and that other men in his unit had been more extensively burned. In other incidents, men in his unit died after being subjected to dangerous restraint methods. He also suffered from toxic environmental conditions, including asbestos and sewage leakage. As a family, we were determined to end these abuses.

Jud’s experiences fueled my passion to change the system. I worked in Washington to pass federal legislation to move the Medicaid funding bias away from institutions and to build the community service system, making the community the preferred service setting. My advocacy led me to a career in The Arc’s national public policy office, which I joined in 1984. While our systems have evolved since the 70s through the late 80s when my brother was experiencing so much pain, we still have a long way to go. I am happy to report that Jud was eventually able to leave the state institution and live in a group home about 7 minutes from our widowed mother in his beloved hometown for the last 20+ years of his life. Jud also experienced some serious problems in his group home, but those were able to be discovered and remedied because family were nearby and able to observe how he was doing. For those who understood him, Jud continued his mantra: “Stay at the new house; not gonna keep saying it” throughout those years, lest anyone think he would ever want to go back to the institution.

One of the things I’m most proud of during my nearly 40-year career in disability rights is my work on what was known as the Chafee bill, after Senator John Chafee (R-RI) who was the lead Senate sponsor. In 1983, he proposed sweeping changes to the service system, the kind of shift that families like mine were fighting for across the country. As is typical in major change legislation, the Chafee bill did not pass as originally written, but the bill’s groundswell of grassroots demands for progress, and the resulting recognition at the state level that change was coming, began the hard work in the states for the evolution toward better provision of services. There were so many heroes in this effort: state directors of DD services who pushed their governors and legislatures, parents and families who rallied in support, self-advocates who began to speak on behalf of their fellow friends in institutions, chapters of The Arc and other plaintiffs who took states to court, chapters of The Arc which forced state changes, Members of Congress of both parties in both the House and Senate who supported real reform for the sake of the people affected, and many more.

In the end of the Chafee bill efforts, the Community Supported Living Amendments (CSLA) option was enacted to provide funds to 8 states over 5 years to create new Medicaid community services – 36 states applied for the funds, indicating the pent-up desire at the state level for new approaches. These were new funds available in addition to the Home and Community-Based Waiver program. The CSLA option helped to alter the way the HCBS waiver and long term supports and services for people with IDD were later implemented. There have been many bills which have passed over the years, refining and improving what is available. It was the Chafee bill that laid the groundwork, and thinking back to this bipartisan effort gives me hope that this country can do great things when we work together to improve lives.

The work must continue and advocates should not be discouraged by set-backs. We are much farther ahead than we were when my brother Jud arrived on the scene in 1956, but we still have work to do to make our communities welcoming and ready for each person, regardless of need.

You can make a difference. Tell your members of Congress why this bill is so critical to your or your family member’s future.

 

 

 

 

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Independence Can’t Wait: New Bill in Congress Championed by The Arc Will Make Home and Community-Based Services Available to All

/in , , , , , , , /by The Arc

Washington, D.C. – As the nation continues to face a pandemic that has put a glaring spotlight on the health dangers facing people living in nursing homes and institutions, today Members of Congress unveiled a critical bill developed with The Arc and other disability and aging advocates, that will fundamentally change how people with intellectual and developmental disabilities (IDD) and older adults live their lives.

The Home and Community-Based Services Access Act (HAA) is a discussion draft bill that would eventually end waiting lists to receive disability services everywhere and help people with disabilities and older adults access the Medicaid home and community-based services (HCBS) they need in order to live at home in their communities with their friends and family, instead of institutions and nursing homes. Today, there are nearly 850,000 people on waiting lists across the country. People with disabilities and their families often wait years—sometimes decades—to access these services.

“For over 70 years, The Arc has been fighting for people with disabilities to live independently with the right supports. We believe that everyone benefits when people with disabilities are a part of the fabric of their communities, not locked away in the institutions that to this day, exist in 36 states. Yet this country has treated access to the services that help people with disabilities gain independence as an option, not a right. As we have seen in the COVID-19 pandemic, this puts people in grave danger. The Arc is leading the charge to change this reality,” said Peter Berns, CEO, The Arc.

People with disabilities and older adults often need help with things like working at a job in the community, making food and eating, managing money and medications, and bathing and dressing. These services are only available through a part of Medicaid called home and community-based services, or HCBS.

Many state Medicaid programs have long waiting lists for HCBS. And these lists don’t capture those who may not know there is a list to be on, or what services are available. Why the wait? Medicaid is required to cover health care services, provided by doctors and hospitals, as well as many institutional services, such as nursing homes and long-term care facilities for people with disabilities without any waiting lists. But states are allowed to treat HCBS as optional – even though they are anything but to people with intellectual and developmental disabilities and their families. This is the “institutional bias” in Medicaid – and The Arc has been advocating to change this for decades.

The bill tackles another decades-long problem – low pay for direct support professionals, or DSPs – the people who provide the services to people with IDD and older adults. DSPs are disproportionately women of color, doing critical tasks that support people with disabilities with taking medications, bathing, eating, getting out into the community, and more.  Due to low wages, there is more than 50% turnover annually, and the average wage is less than $11/ hour, making it difficult to provide continuity in services, provide a family sustaining wage, and threatening the quality of care.  The bill will require states to ensure that the direct care workforce is paid a family sustaining wage.

And finally, this legislation addresses an issue people with disabilities and their families face once they are getting services. Often, they end up stuck in one place, tied to Medicaid-funded services in one state that can’t be transferred over state lines. This lack of portability stops adults with disabilities from moving to be closer to their siblings or other family members, when their parents with whom they live can no longer support them or pass away. It leaves parents and siblings of people with disabilities desperate due to the lack of availability of services and long waiting lists, to get what their loved one need in another state.  The problem is particularly hard for military families that move frequently.

The HAA solves these problems by increasing Medicaid funding to states for HCBS, establishing a basic set of services that all states must provide, and providing other tools to help states build the capacity that they need to serve all people who need HCBS.

“Our goal is for people with intellectual and developmental disabilities to have timely access to the quality supports and services they need and want to achieve a life of personal significance. This legislation provides real solutions to problems that have persisted for decades, and people with disabilities, their families, and the staff that support their lives can’t wait any longer. We thank the bill’s lead sponsors – Senators Hassan, Brown and Casey, and Representative Dingell, for their commitment and persistence in solving these problems that inhibit the lives of millions of people with disabilities and their family members,” said Berns.

For more information on HCBS and resources, visit thearc.org/medicaidcantwait.

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

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

A gloved hand holding a vaccine vial, with the words COVID-19 in black on a board behind it.

New COVID-19 Response Legislation Finally Recognizes Urgent Needs of People With Disabilities

/in , , , , , , /by Pam Katz

The Arc is relieved that Congress has finally taken action to tackle the dire challenges people with disabilities face as the COVID-19 pandemic continues into a second year. The Arc and our advocates have fought every day since the start of this crisis to ensure that the needs of people with intellectual and developmental disabilities (IDD) are included in relief legislation to address the disproportionate impact of the pandemic on them, their families, and the direct support workforce.

The COVID-19 Emergency Relief legislation, passed by Congress on Tuesday, includes vital dedicated funding to strengthen and expand access to Medicaid home and community-based services (HCBS), which help people with disabilities live as independently as possible in their community and out of the danger of institutions and nursing homes.

“After almost a full year of leaving the most urgent needs of people with intellectual and developmental disabilities out of relief legislation, Members of Congress are finally providing the resources necessary for people with disabilities to live safely, in the community, with the support they need,” said Peter Berns, Chief Executive Officer of The Arc. “This funding is desperately needed by the systems, providers and workforce that support people with disabilities.”

Many people with disabilities rely on HCBS to live at home in their own communities with family or roommates with support. They often need help with things like working at a job in the community, making food and eating, managing money and medications, and bathing and dressing. These services are almost solely available through Medicaid HCBS funding. For over 70 years, The Arc has been fighting for people with disabilities to live independently with the right supports and lead the same kind of life as everyone else – Medicaid HCBS makes this possible.

Over the last year, while the COVID-19 pandemic has raged across the country, the system that provides HCBS has buckled under the pressure without a single dedicated dollar in federal aid to address the crisis. Meanwhile, the health and wellbeing of people with disabilities has been at grave risk, with too many people stuck in the very places that have proven to be the most dangerous during the pandemic – large, congregate settings like the institutions that exist in 36 states, and nursing homes. Families have been left to scramble and scrape together supports for their loved ones to keep them out of harm’s way, and direct support professionals have been skipped over and over again in priority for personal protective equipment and supports as the essential workforce that they are. This bill provides a significant, yearlong 10% increase in the federal match for the Medicaid program, a state and federal partnership, which will invest billions of federal dollars into this strapped system.

“This significant boost for home and community-based services will make an immediate impact for people with disabilities across the country. Robust HCBS funding is critical to keeping people with disabilities healthy, safe, and out of nursing homes and other institutional settings where the virus runs rampant. We have more work to do because the reality is, the system needed reform and investment before COVID-19 arrived on our doorstep. The new relief legislation reassures us that our work with and for people with IDD matters, and we will carry that energy forward in our ongoing advocacy,” said Berns.

Congress also authorized another round of stimulus payments, this time including all people with disabilities, even those who are defined by the IRS to be “adult dependents.” The Arc led efforts earlier in the pandemic to ensure that people with disabilities on Social Security and Supplemental Security Income benefits received their stimulus payments automatically.

In addition, we are pleased to see the following provisions in the legislation:

  • Extension of Supplemental Nutrition Assistance Program (SNAP) benefit increase through September to help people access food;
  • Temporary increase in premium tax credits under the Affordable Care Act to make it easier to have health insurance in this public health crisis;
  • Extension and expansion of tax credits to cover COVID leave, so that families can support loved ones while care is interrupted;
  • Expansion of Earned Income Tax Credit for childless adults to help family finances; and
  • Expansion of and refundability for the Child Tax Credit to help low-income families.
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The Arc Partners With Comcast NBCUniversal to Increase Access to Special Education Services for Students of Color With Disabilities

/in , , , /by The Arc

Washington, D.C. – During this time of unprecedented challenges for special education students, The Arc is pleased to announce that we have been awarded a $200,000 grant from Comcast NBCUniversal focused on helping more students of color access greater resources to help them thrive.

The funding will allow The Arc@School to expand support of students with intellectual and developmental disabilities (IDD) through advocacy resources. These resources are meant to serve those who might not otherwise be reached during this critical time and to ensure that students receive the benefits of public education in the least restrictive setting possible, as mandated by federal and state law.

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 is committed to equal access to education for all students with intellectual and developmental disabilities to increase opportunity throughout their lifetimes. We are grateful for Comcast NBCUniversal’s support of our education advocacy, particularly as the pandemic has created so much upheaval in education. Now more than ever, families need help to understand their rights in the classroom – whether that classroom is in person or virtual. We could not do it without this generous support,” said Peter Berns, Chief Executive Officer of The Arc.

“Students of color with disabilities are traditionally overlooked when seeking the right special education for themselves, and we are working closely with The Arc to provide families with much-needed access,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation. “We believe creating tools for families to advocate for special education services is such an important step toward a more equitable future.”

The grant gives The Arc@School resources to:

  • Recruit 250 families nationwide to receive scholarships to access The Arc@School’s special education advocacy curriculum at no cost this year. We will award scholarships to families of color and low-income families.
  • Create special education “Know Your Rights” resources in Spanish, available on a new Spanish section of The Arc@School’s website.
  • Develop a facilitation guide that chapters of The Arc and other parent training organizations can use with The Arc@School’s Advocacy Curriculum. The guide will support working groups and study groups for students, families, and professionals.

About Comcast Corporation

Comcast Corporation (Nasdaq: CMCSA) is a global media and technology company with three primary businesses:  Comcast Cable, NBCUniversal, and Sky.  Comcast Cable is one of the United States’ largest video, high-speed internet, and phone providers to residential customers under the Xfinity brand, and also provides these services to businesses.  It also provides wireless and security and automation services to residential customers under the Xfinity brand.  NBCUniversal is global and operates news, entertainment and sports cable networks, the NBC and Telemundo broadcast networks, television production operations, television station groups, Universal Pictures, and Universal Parks and Resorts.  Sky is one of Europe’s leading media and entertainment companies, connecting customers to a broad range of video content through its pay television services.  It also provides communications services, including residential high-speed internet, phone, and wireless services.  Sky operates the Sky News broadcast network and sports and entertainment networks, produces original content, and has exclusive content rights.  Visit www.comcastcorporation.com for more information.

 

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When People With Disabilities Are Forced to Choose Between Love and Needed Benefits: Marriage Penalties

/in , , , /by Pam Katz

This Valentine’s Day, as many as 6 million couples will choose to celebrate their love by becoming engaged. But for many people with IDD, this dream of marriage forces them to choose between love and necessary supports to live independently.

When Jen Met Eddie…

Jen and Eddie at an advocacy event.

Eddie and Jen first met while planning an Oregon self-advocacy event in 2006. They both noticed each other across a table and shared with friends that they thought the other was cute. Eventually, Eddie and Jen started getting lunch together and going out – and decided to become girlfriend and boyfriend.

At lunch one day, Eddie popped the question for the first time to Jen. She asked him to come to Christmas with her and ask for her parents’ permission. At Christmas, Eddie popped the question again. “I got on one knee and asked her hand in marriage. It was quite nice.”

Both Eddie and Jen are long-time professional self-advocates and knew of the Social Security and Supplemental Security Income (SSI) marriage penalties. The marriage penalties are punitive rules that cut benefits and limit savings for married couples who rely on critical Social Security SSI benefits.

While they wanted to get married, Eddie and Jen were terrified of what getting married would mean for their lives.

Jen, who has a spinal condition that requires 24-hour medical assistance, explains, “I would lose my Medicaid and have to pay out of pocket for medical needs, and I don’t earn enough to pay out-of-pocket for medications or other medical equipment.”

Eddie, who lives in an adult foster home, adds, “It would impact me significantly if I lost my benefits. I would have no money to live on…. I would have no place to live, [as the rental costs in my county are very high].”

In the end, Jen and Eddie decided not to pursue a legal marriage—and this has meant giving up dreams, big and small.

Both Eddie and Jen wanted to foster a child and become parents, and they believed that they would be great parents to a little boy or girl. However, without a legal marriage, this dream seemed far away. Now in their late 40s, they are not sure if it could ever happen.

And, while Eddie and Jen are committed to each other, not having a legal marriage means not having the legal backing to make medical decisions for each other if needed. According to Jen, “we’d like to [be able to] make medical decisions for our partner.” But, without the legal standing, Eddie and Jen may not be able to do this.

For the past several years, Eddie and Jen have been advocating to remove this unjust rule that no couple should have to deal with.

 “It’s an unfair [rule] that has been around forever. We should be able to [get married and not worry about our benefits], just like everyone else. People don’t understand that people with disabilities are just like everyone else. We pay taxes, we work, [and] we contribute to society.”

Jen and Eddie’s story is one of many. Married people with disabilities often experience penalties that force the couple to give up necessary benefits to marry. This may mean taking a pay cut, working less, or having to quit a job altogether.

No one should have to decide between being legally married and getting the support they need to live in the community.

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

/in , , , , /by The Arc

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

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

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

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

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

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

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