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

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!

 

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

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

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.

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.

Celebrating Strength This Mother’s Day: A Mother’s Persistence

This Mother’s Day, The Arc celebrates the unconditionaA selfie of a mother and her two teenage children on a couch, with checkered blinds in the background. l love and infinite strength of mothers. We recognize the mother figures and grandmothers who nurture and support us – no matter what. We embrace the challenges of motherhood. We revel in the joys.

If you ask Kendra Mendoza, a mother of two in North Providence, Rhode Island and friend of The Arc, what her role as a mother means to her, the answer is clear.

“It means everything to me. It is my sole first purpose in this life – being a mom,” she shared with us.

Kendra is a mother and a fighter, a force of nature to be reckoned with and admired. The single mother has taken on the state disability services agency, school boards, health care providers, and landlords. Kendra stops at nothing to make sure that her 17-year-old son Joshua receives respect, compassionate care and support, and opportunities to thrive in school and beyond.

Joshua was born with a rare genetic disorder and several other developmental disabilities. He requires complex medical care and supervision around the clock. Kendra says he is a blessing.

“Whenever I look at Joshua, I see ability and potential,” she said. “He has taught me so much. He takes life and smiles through it.”

Joshua underwent brain surgery at two days old. He has had two more brain operations since. With his mother by his side every step of the way, Joshua has far exceeded doctors’ expectations.

Joshua lives in the moment. When asked for this story during breakfast what he loves most about his mother, he replied: “You feed me!”

Eating is one of Joshua’s favorite activities. He is known at his local Wendy’s and Dunkin’ Donuts. Joshua also loves reading and art. He enjoys playing Memory on his tablet and going on car rides and walks to the store. He likes listening to music, especially John Legend and Ed Sheeran. Joshua helps out around the house, clearing the table and putting dishes in the sink, as well as tying up the trash.

Kendra’s determinatioA mother and her son in a wheelchair testify in a public policy hearing. n as a mother extends into advocacy. Working with The Arc Rhode Island, she advocated in the General Assembly in support of special education reform to give parents and guardians more rights in the Individualized Education Program, or IEP, process. In testimony before the Rhode Island House of Representatives, Kendra and Joshua shared challenges with the IEP process for families and why is critical that students with disabilities receive a Free Appropriate Public Education, or FAPE, as mandated by federal and state law. Kendra is also part of a group of parents, guardians, and educators in Rhode Island advocating for the creation of an independent special education ombudsman office to investigate special education disputes and serve as a resource for parents and guardians. The office would also provide an outlet for anonymous reports of possible violations.

In her advocacy, Kendra has worked closely with Joanna Scocchi, Director of The Arc Rhode Island.

“Kendra is an example of the many parents who are fighting not just for their own child, but for all children to lead a full life with opportunities, hopes, and dreams,” said Scocchi. “It takes the determination of parents and advocates to advance the goal of ensuring that society understands every child is entitled to – and deserves – an education that meets their unique needs and prepares them for further education, employment, and independent living.”

Like so many mothers, Kendra manages to persist, one battle after another, but always with the nagging feeling that things should be easier. It’s nearly a universal feeling across the disability community.

“I don’t understand why we have to fight all the time for things that should be common sense,” said Kendra.

Since the start of the COVID-19 pandemic, Kendra has worked closely with Joshua’s IEP team to try to ensure that he continues to receive an education remotely. People with intellectual and developmental disabilities are at higher risk of contracting the virus and health outcomes are often worse. Trying to keep Joshua safe and in virtual learning has felt like a second and third job. Kendra hopes Congress passes a national paid leave policy so that unpaid family caregivers don’t have to choose between a paycheck and the health and well-being of their loved ones.

The Arc and many other groups that represent caregivers urged the White House and Congress to include paid leave in forthcoming legislation and President Biden has urged Congress to do so. The pandemic has highlighted what family caregivers have known for decades—we need paid leave now.

There is one more thing about Kendra Mendoza you should know. When she’s not with Joshua, she’s supporting women with disabilities in a group home. Kendra is employed as a direct support professional, or DSP. She helps the women she serves with dressing, eating, and preparing for their day.

Many years ago, Kendra decided to pursue a career in health care in order to learn as much as possible about the road ahead as a mother to a child with multiple disabilities. This Mother’s Day, she reflects on her children and how she is the lucky one.

Kendra says the simple moments mean the most.

“The moment your kids smile and they know they’re safe,” she said. “They remind me of my purpose. They push me to grow as a person.”

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

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

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.

 

 

 

 

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

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

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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Adapting to Changing Landscapes: The Creativity and Perseverance of The Arc’s Chapters During COVID-19

Over the last 10 months, the COVID-19 pandemic has undeniably shifted the reality of how we connect with each other. To protect the safety of people with disabilities, their families, and our staff, The Arc’s chapters were forced to rapidly shut down in-person services and shift to a virtual format. Many chapters worried they might not be able to sustain the services and programming that are critical to their communities.

Comcast NBCUniversal recognized that the pandemic threatened to cut off critical local support systems for people with disabilities at a time when they were needed the most and stepped up to quickly provide support. Comcast generously provided grants with flexibility so chapters of The Arc could make the most impact in their fight to safely prevent isolation and support overburdened families. This allowed our chapters to explore new and innovative ways to engage families in the community, at times reaching more people than in the past.

At New Star, Inc. in Illinois and Indiana, the virtual environment brought by the pandemic has provided new opportunities to connect to the community in ways not previously available. For example, the shift has provided 35-year-old Alyssa with the possibility to participate in programming she was unable to before. Before the pandemic, Alyssa couldn’t participate in day programming for years due to her intense medical needs resulting from Angelman Syndrome. When her chapter’s offerings shifted to an online format, it increased her ability to join activities like being read to, exercise programs, socialization with peers, and music therapy. Alyssa’s mother, Renee Valfre stated,

“I have seen her cognition, attending and comprehension skills improve. I find the structure Zoom offers her in a setting at home, that is calm without the stimulus of others’ movements, vocalizations and outbursts, allows Alyssa to focus on the activity. Without virtual programming, Alyssa would have had no instruction or involvement with other individuals during the quarantine.”

A young man stands in his home on a hardwood floor with a few plants behind him and an area rug to his right. A small gray dog naps on a piece of furniture to his left.
David dances with his peers during a virtual Friday dance party

Another New Star virtual program, the Friday dance party, has provided valuable opportunities for social engagement as participants struggle through prolonged isolation at home. Each week, dance party participants work together to pick a theme and songs. On Friday, they gather on video to let loose, do musical trivia, learn new dances, and take turns co-DJing and interacting with peers.

Community member David has been at home and unable to spend time with his friends since March. During this time, his dance parties were limited to a party of one. But with the help of New Star’s Community Day Services and the webcams purchased with their Comcast grant funding, he has been able to join group dance parties and interact with friends while doing what he loves!

David’s mom, Denise Rhodes, couldn’t be happier with how much the program has helped him: “I always say, get up and get active! Virtual dance parties have helped David do that!”

Comcast’s assistance helped open a virtual door for another group The Arc provides services for: parents. Many parents of children with intellectual and developmental disabilities informed The Arc of Aurora in Colorado that schooling their children with Individualized Education Programs (IEPs) at home was challenging. With support from Comcast, The Arc of Aurora created a no-cost online training for parents called Schooling at Home: Your Guide To Remote and Hybrid Learning With IEP Supports. Both parents and educators have enrolled since the training kicked off in September, and that number rises each week. The training delves into how to navigate the special education system and speak up for students in areas like IEPs, procedural rights, and documentation as well as downloadable resources.

“The training aided in clarity for remote learning information and future planning. As a seasoned mom-advocate, I definitely learned things I didn’t know and hadn’t heard!” -Marry Baker, mother of child with IDD

Comcast NBCUniversal’s support extends far beyond chapter funding. They are leveraging their media platforms to raise public awareness of the impacts of the pandemic on people with IDD—including through multiple segments on the TODAY Show, expanding internet access to low-income families and school districts through Internet Essentials, and advancing accessibility with technology like the voice-activated remote control, X1 eye control, and a dedicated service center for customers with disabilities.

As our chapters continue to find creative solutions to the challenges brought forth by COVID-19, they can breathe a little easier knowing that partners like Comcast will continue to have the backs of people with disabilities, their families, and those who support them.


These grants and more are made possible by:

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