A graduate stands in front of a tree on a sandy spot with boulders around him. He is wearing a cap and gown, holding a diploma, and smiling.

A Genetics Journey To Support What’s Possible in Life

/in /by Pam Katz

Ellen Feldman has a passion for increasing research in the intellectual and developmental disabilities (IDD) field and continuing her ongoing advocacy in that arena. She currently serves as the Central Region Vice President for The Arc New York, and as a member of the Board of Governors and Executive Committee.

So, what inspires Ellen to devote her time and energy to this field? The answer is simple – her son.A middle-aged man stands in a kitchen with white cabinets. He is wearing a red shirt, and apron, and is using a cooking utensil on a sheet pan of food.

Ellen’s son, Matthew, is 40 years old; he receives supports and services through ACHIEVE, a chapter of The Arc, and has lived in a group home since he was 21. When Matthew was 14 months old, he was diagnosed with IDD and several associated symptoms – all with an unknown cause.

“We went to see the head of pediatric neurology at Columbia Presbyterian Hospital many years ago, and they couldn’t tell us what caused Matthew’s IDD,” Ellen said. “They couldn’t give us a real diagnosis. They basically told us that he’s going to be significantly delayed – he’ll never go to college and he’ll never drive a car. This news was crushing, of course. So we stumbled our way around, got him into early intervention programs, and did whatever we could.

“We’ve been down the path of lots of different hospitals and development centers, always looking – not for cures – but for ways to help him live his best life,” she said.

Ellen reached out to The Arc New York network for recommendations of an objective third party that might help her gain more answers. Ellen connected with a geneticist at Columbia Presbyterian Hospital, and was sent an at-home genetic testing kit. Her family did a series of saliva swabs and returned the package to be analyzed.

On Labor Day Weekend, she received a call that her son has a rare genetic disorder called SynGAP1.

There is currently no cure or specific treatment for the underlying condition that causes

SynGAP1. However, learning more about the symptoms related to the genetic disorder can help individuals find relief and better understand how to manage them. For instance, Matthew has been having staring seizures for a while, and when he comes out of these seizures, he has aggressive episodes.

“There was an incident where Matthew was staring at another individual, staff asked him to stop staring, and he wouldn’t stop,” Ellen said. “This continued until he all of a sudden got aggressive and angry. We now know that when you come out of a seizure, there’s a period of delirium where you’re confused and don’t know what just happened – this confusion triggers an aggressive response. Recognizing these symptoms and being calm instead of admonishing Matthew can help prevent these situations from happening.”

Genetic testing can also lead to the discovery of secondary conditions connected to SynGAP1. Ellen learned her son is at a higher risk of colorectal cancer, and as a result, he’s going for his colonoscopy and endoscopy at the age of 40 instead of 45, the recommended age for those not at risk.

GENETIC TESTING

Ellen understands that some might be apprehensive about genetic testing, especially when it can cost upwards of $3,000. However, she wants to share an opportunity for individuals to potentially get free and convenient genetic testing at home.

She discovered Probably Genetic, a company offering free genetic testing paid for by sponsors. The company’s website provides people with a questionnaire to determine if they are eligible for free testing. A physician reviews the answers, and if the person is considered to be a good candidate, they are sent a test that only requires a saliva sample. The test is returned with prepaid shipping and analyzed in the lab. In about eight weeks, a geneticist calls to review their clinical genetic report.

The SynGAP Research Fund also notes these genetic testing options:

  • Ambit provides free access to genetic counseling and testing to all patients who qualify. Testing is available in all 50 states and is open to all ages. Qualifications include: children age seven and under with at least one seizure; or anyone over seven with at least one seizure, one developmental delay and on at least one seizure medication.
  • Invitae’s Behind the Seizure free genetic testing program is offered to any child in the US or Canada under the age of eight years old who has had an unprovoked seizure. Australian residents can visit this website.

SYNGAP1 mutations are suspected to be the underlying cause of approximately 1-2% of all Intellectual Disability (ID) cases, making it one of the most common genetic causes of ID, similar to more well-known syndromes like Fragile X, Angelman and Rett Syndrome.

SynGAP1 mutations are significantly underdiagnosed. The disorder was only discovered in 2009, and testing didn’t begin until 2015, so any genetic testing completed before 2015 would not have shown SynGAP1.

Additionally, many families receive a diagnosis like autism, intellectual disability, or epilepsy and stop their diagnostic search, thinking they have reached a conclusion.

“I stopped looking for a diagnosis and a cause years ago and just focused on what I could be doing for my son,” Ellen said. “The more information we can load into research databases the more data there is for researchers to use. We’ve got to continue looking ahead to the future and always be thinking of what more we can be doing.”

 

 

The Arc logo

Get Ready for Medicaid Renewals in 2023

/in , , /by Pam Katz

As COVID-19 rapidly spread across the U.S. in March 2020, Congress declared a public health emergency and passed legislation that gave states more money for Medicaid if they met certain requirements. One of the main requirements was that people would be able to keep their Medicaid health care during the COVID-19 public health emergency.

As a result of recent legislation, the continuous enrollment requirement will end in early 2023 and states will soon be restarting Medicaid eligibility reviews. For many with disabilities, this means that they may lose critical Medicaid services and supports. Based on estimates, up to 15 million people could lose their current Medicaid coverage.

States may start the renewal process as early as February 1, 2023. Fortunately, there are steps you can take to be ready:

  1. Verify that your contact information is updated. Make sure your state Medicaid agency has your current mailing address, phone number, email, or other contact information so they can easily contact you about your Medicaid coverage.
  2. Check your mail regularly. The state Medicaid agency will mail you a letter about the status of your Medicaid coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid.
  3. Complete and send in your renewal form (if you get one). Fill out the form and return it to your Medicaid agency to help avoid a gap in your Medicaid.
  4. If your Medicaid coverage has ended, visit HealthCare.gov to find an affordable, comprehensive health plan.

For more information, you can visit Medicaid.gov/renewals.

The Arc logo

Statement on the Killing of Tyre Nichols

/in /by The Arc

Washington, DC – As the public learns more about the killing of Tyre Nichols, The Arc stands in solidarity with his family and friends.

“Yet again, the nation watches another video exposing police violence against a Black man after a traffic stop.  We are horrified to witness the brutalization of an unarmed man. Tyre had Crohn’s disease, which made the blows against his very lean body more damaging. Another dying Black son is crying out for his mother and another Black life ended by people who pledge to protect all of us in our communities.

“We speak out in solidarity with Tyre’s family and friends because so many people in The Arc watch with horror as this happens again, and again – and our minds also go to the fear in all of us that people with disabilities within BIPOC or other marginalized communities can end up in the same deadly circumstances as Tyre, during a routine encounter with police.

“The Arc believes everyone belongs and will advocate tirelessly to make this happen. With their intersecting identities, all members of the disability community are valued, respected, and celebrated for who they are. And that belief is steadfast in solidarity with the Nichols family and friends, whom we offer our deepest sympathies and condolences for their loss,” said Peter Berns, CEO, The Arc.

As the largest community-based organization advocating for and with, and serving, people with intellectual and developmental disabilities (IDD) and their families, The Arc works tirelessly to uphold our vision “for people with IDD to be valued members of their communities, have the opportunity to achieve their full potential and a future that is secure.”

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

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

The United States Capitol Building

A Recommitment to Care With the Introduction of the Better Care Better Jobs Act

/in , , /by Pam Katz

Today, Senator Bob Casey (D-PA) introduced a landmark piece of legislation to invest in the country’s care economy and make important improvements to Medicaid home and community-based services (HCBS).

The care workforce is a vital part of community living and inclusion for people with disabilities—and yet the system that supports it continues to be underfunded and complicated to navigate. Hundreds of thousands of people with intellectual and developmental disabilities remain on waiting lists for the services they need to live in and thrive in their communities. The new Better Care Better Jobs Act will address these deficits through several key improvements, including a permanent increase in federal Medicaid funding for eligible states, adding over $300 billion toward expanding and improving access to HCBS.

The proposed updates to Medicaid complement President Biden’s American Jobs Plan—which targets the current care infrastructure crisis and aims to fortify it for the future—by expanding eligibility, requiring coverage for personal care services, expanding supports for family caregivers, addressing the direct care workforce crisis by raising wages, and more.

“People with disabilities deserve the supports to live meaningful and dignified lives in their communities. Their care workers deserve the pay and hours to avoid burnout and turnover. And their families deserve the aid of care workers so they do not have to quit or cut their hours to fill in the gaps. It’s 2023, and we should not have to still be fighting for these basic needs so that everyone has the ability to build the life they want.

“The Arc is, as always, ready to rally support for these much-needed changes and looks forward to making sure Congress knows the difference that they would make in the lives of countless people with disabilities,” said Peter Berns, CEO, The Arc.

The Arc logo

The Arc Announces Departure of Longtime CEO and Leadership Transition

/in /by Pam Katz

The Arc’s Board of Directors announces today that its Chief Executive Officer, Peter Berns, will be leaving the organization upon expiration of his contract in February. Since 2008, Peter has been at the helm of The Arc, the world’s largest community-based organization of and for people with intellectual and developmental disabilities (IDD) and their families. Under his leadership, the organization has charted an ambitious path of growth and modernization as it carries out its mission of “promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes.”

Early in his tenure, Berns took on the task of successfully rebranding the organization and its chapter network, creating a unified identity and messaging that increased its national recognition. He then spearheaded the creation of eight new national programs to address pressing needs in the IDD community on aspects of life ranging from education and employment, to future planning, health, and technology, including the National Center on Criminal Justice and Disability and a new legal advocacy program.

He also steered the organization, its 600 chapters, and the people they serve through difficult times, including legislative threats to Medicaid and to Social Security—programs that make life in the community possible for people with IDD.

During the past three years, Berns has successfully led The Arc through the COVID-19 pandemic and supported chapters to adapt their services in a constantly changing environment.  The Arc helped lead the disability community through the pandemic, mounting successful legal challenges to discriminatory policies in medical care and rallying advocates for investments in home and community-based services.

At the same time and with the future in mind, Berns led the organization through a collaborative process to develop the new Strategic Framework for the Future of The Arc and launched a new Diversity Strategic Action Plan for Advancing Access, Equity, and Inclusion, broadening the organization’s commitment to intersectional advocacy and supports to people with disabilities and their families.

Under his leadership, The Arc greatly expanded its grassroots organizing and mobilization to achieve more power and successfully influence the government policies and practices that so dramatically affect the lives of people with IDD and their families.

As the organization approaches its 75th anniversary, Berns’ most recent endeavor has been to resurrect The Arc of the United States Foundation, with Foundation board chair Carol Wheeler, to build a base of philanthropic support that will ensure The Arc remains a strong advocate for people with IDD and their families for decades to come.

Commenting on his tenure, Berns said: “Since my first year on the job, I’ve heard people with IDD, their parents, and family members, talk about how they depend on The Arc to protect their rights and support them as valued members of their communities. That simple, honest sentiment was all I needed to fuel my passion for this work over the past 15 years.”

Current Board President, Laura Kennedy noted: “The board thanks Peter for all of his accomplishments during his tenure and wishes him well going forward. He leaves The Arc having built a strong foundation for the organization as it now undertakes a national search for new leadership.”

 

 

 

 

 

A couple on their wedding day. They are posed in front of a grassy area with trees around them and are wearing a wedding dress and suit. The bride is holding a bouquet of flowers.

From Friendship to Lifelong Love: Scott and Lauren’s Journey

/in /by Pam Katz

Finding love is something many of us hope for, including people with disabilities. Lauren and Scott met while they were participating in programming at Favarh (The Arc of Farmington Valley). At first, they forged a strong friendship, but as the years went on, their relationship eventually blossomed into love. Now married and living together independently, Scott and Lauren spoke with us about their journey and what it means to make their own choices in love and life.

How did you meet?

A young couple stands with their arms around each other smiling, in front of a window in a house.

LAUREN: At the age of 21, I was looking for a job and found Favarh. I was nervous and didn’t know who was going to be friends with me, but I met Scott on my first day. It was amazing because that night, I went home and I’m like “Wow, I think I made an actual friend.” When I met him, he stuck by me all the time. He worked with me for two years at Michaels, he and I had a very good friendship. Everyone kind of knew that he and I would end up together. I was coming out of a relationship, and I tried some dating sites. I thought it would be really nice to see what it was like.

SCOTT: I actually talked her out of it.

LAUREN: He told me I shouldn’t be on apps, and said “Let me be the one to be with you.”

SCOTT: I didn’t want anything to happen to her.

LAUREN: I was nervous because I didn’t know what to expect out of him. I had been verbally abused before. But I knew at some point, there’s got to be someone out there who can put me first and for me to rely on.

How did you start dating?

LAUREN: No one asked the other person out, we just did it together. We just wanted to go out and see what it’s like.

When Scott and I became boyfriend and girlfriend, my grandfather passed away. It was really weird timing. For me to have Scott was really special. He was the first one I messaged after I heard the news because I knew I needed my friend to understand what was happening. He came to my grandfather’s memorial service and it was so nice.

My mom and dad were very supportive of us going out and took us places (and still do.) It kind of amazes me now to look back and say wow, this really has happened. He’s been by my side throughout the years. It’s really hard to be away from him.

We got engaged in 2019. He needed my parents’ permission to propose to me. Scott and my dad went out to dinner together, and then Scott and my mom separately.

A couple on their wedding day. They are posed in front of a grassy area with trees around them and are wearing a wedding dress and suit. The bride is holding a bouquet of flowers.

Why was getting married important to you and what does it mean to you? What was the process like?

LAUREN: Just the fact that we’re together. Knowing he’s there for me is a great feeling.

SCOTT: Relying on each other more. Knowing that we’re husband and wife.

LAUREN: Planning our wedding was a long process. It was the hottest day of the year that we got married. He wanted to wear his bathing suit under his wedding suit! It was really hard trying to figure out everything. I have a brother who lives in Denver, and he was a part of the wedding. We had two best men and I had junior bridesmaid and a maid of honor. It was really fun having my hair and makeup done. Everyone in the wedding sat with us at our table. All I wanted was a small wedding, but we ended up inviting a lot of people!

Why is being independent important to you?

LAUREN: It’s important to be in control of what you do.

SCOTT: Our parents don’t come over as much as they used to. We’ve had less staffing, they’ve backed off of helping us. They used to observe and supervise us cooking dinner, they used to check on us a lot more. Now we do our own laundry, plan our days, go to work, and come home. It is awesome to be able to stay up as late as we want. And now [living together], we don’t have to message each other – we don’t have to use our phones as much because we’re right here.

What do you see for your future?

LAUREN: Having kids—someday being parents. I can see us having independent jobs.

SCOTT: Growing old together. I can’t imagine being with anyone else.

The Arc logo

Using Medicaid Is Complicated: That Hurts People With Disabilities

/in /by The Arc

Medicaid is the nation’s primary health insurance program for people with disabilities, but it is so much more than health care. For individuals with disabilities and their families, Medicaid also funds vital supports to keep them in their communities.

People with disabilities who are eligible for Medicaid often live in or near poverty. They rely on Medicaid for stability, support, and services. However, Medicaid can be extremely challenging to navigate—requiring people to spend significant time and effort learning how the system works, how to complete all of the necessary paperwork, and waiting for appointments to access critical care and services. If people are unable to navigate these challenges, they risk losing essential care, services, and stability.

In 2022, The Arc and its chapters asked families nationwide about their challenges navigating Medicaid.

Terri, who has a child with Down syndrome, notes that complications with the Medicaid application process have meant her family has “missed out on eight years of having co-pays covered, on financial support for the diapers her son wore until he was seven, and on assistive devices to help him walk and talk. Despite being well-educated, I found the paperwork really daunting,” says Terri. “The cynic in me wondered if it was complicated by design, to frustrate people from applying.”

Frances, a self-advocate from Colorado, has received Medicaid for over 40 years. Still, she encounters many difficulties in navigating the Medicaid system. According to Frances, “It is frustrating because I do not know what my co-pay is on a doctor visit and I will receive a bill that I do not understand. When I call to ask for more information, it is often hard to talk to a person and get a call back when I leave a message.”

Many people on Medicaid are required to reapply or prove they are still eligible for services on a yearly or even semi-annual basis. For Frances, this is the biggest barrier. “I have to work with the Department of Human Services and submit proof of housing and income,” she says. “But because they are not meeting with people in person, I have to fax these documents, and it is very difficult to get a hold of someone at the office to do this. I wish I could submit this paperwork in person.”

Monique, a disability professional from California, recounts the difficulties of trying to get a specialized wheelchair through the Medicaid system for an individual with Parkinson’s disease. Monique notes that it took “multiple months to get the process started.” This long wait time meant the person with a disability had to use a rented wheelchair “which was not adequate for [him] and his staff.” By the time the chair arrived over a year later, the man was already in a nursing home. “[He] died a week later,” says Monique. “[He] never even sat in his wheelchair or was able to see it.”

In the coming months, navigating Medicaid will likely get even more complicated. There have been special rules in place to protect people from losing Medicaid during the COVID-19 pandemic. In April 2023, these rules will end, and states will likely begin kicking millions of people off Medicaid.

Accessing Medicaid should be made easier, not harder. The Arc will continue to advocate to strengthen and protect Medicaid for people with disabilities and their families so that everyone can navigate it and access this vital support.

A Hispanic man stands in a black graduation cap and gown, smiling and holding a diploma. He is wearing a multi-colored stole over his gown.

Despite Obstacles, Carlos Is Determined To Pursue His Dreams

/in /by Pam Katz

A Hispanic man stands in a black graduation cap and gown, smiling and holding a diploma. He is wearing a multi-colored stole over his gown.

Carlos is 32 years old, lives in Maryland, and has cerebral palsy.

His life has been filled with obstacles, but despite all that he has faced, he’s remained determined to achieve his dreams.

Carlos was born in Ecuador, where the landscape of disability services was far scarcer, and discrimination far worse. They did not have classes or formal disability supports available. When his mother Maria took him to doctors, she was repeatedly told he would never walk or talk, would spend his whole life stuck in bed, and that “they should just let him die.” Unable to accept this as her son’s fate, Maria and her family left their entire life behind to seek out better and immigrated to the United States when he was four years old.

While the disability service system in the U.S. was a marked improvement, Carlos still faced difficulties growing up—many due to misperceptions and discrimination from those around him.

“I was bullied in school. No one wanted to respect me. They made fun of me, how I walked…how I talked. I had trouble learning to walk and it took me until around 14 years old to walk without wheelchairs, walkers, and other devices. I had to learn English—it was difficult. I didn’t really have any friends and would sit by myself. I was sad. I don’t want that to happen to anyone else—it felt terrible.”

Things continued to be challenging as Carlos graduated and transitioned into college.

“In college, it was the same thing. People did not respect me or help me. Teachers have a lot of students and don’t care. I ended up leaving Salisbury University to finish my associate’s degree at a community college because they did not have the right program or supports for people with special needs. Then I went to Gaucher College and finished in May of 2022. It was so hard for me to do it, but I can do it.”

Carlos is proud to have completed college and entered the real world. But even outside of the classroom, inaccessible public spaces and misperceptions still plague him as he navigates his adult life. He often falls in cities that do not have the access features he needs like ramps, curb cuts, and elevators. People often think he is drunk because of the way he talks and won’t let him into places—even after he tells them he has cerebral palsy—because they don’t know what it is.

“They hear the way I talk, and they think I am stupid, but I’m not. I know what I am doing. I speak two languages and I’m good at math. I am proud of how far I have come in my life. I can walk by myself, I can use the bathroom alone, and I graduated from college. I want people to stop bullying handicapped people like me.”

A family including a mom, dad, and three siblings stands posing together and smiling in formal wear. They are standing on a grassy field with trees in the background.Carlos now works at TDezz Badass Creations as part of the accounting and management department. He likes the job and enjoys helping people. But he dreams of opening his own business or working in Washington, DC. He loves going to the movies and the mall, especially with his girlfriend Naya whom he met in community college. He loves his dogs Lucas and Tyson, his siblings David and Karla, and his parents Maria and Carlos who are the most important people in his life and have been there for him through it all. He visits his relatives back in Ecuador often and is proud of his family.

Despite the challenges he has faced, he still chooses hope every day. He notes that “My biggest fear is that people won’t understand me, but I never give up. A life is nice to live and is beautiful. Life is too meaningful to waste.” Carlos is a resilient and determined man—but the barriers he has encountered, both in his physical environment and the perceptions of those around him, are harmful and limiting. As Carlos emotionally shared, “Everyone will be disabled at some point in their life. Things need to change.”

Want to read more stories like this? Visit thearc.org/stories.