Three people standing outside at a wedding. On the left is a bridesmaid wearing a strapless purple dress and holding a bouquet of yellow and purple flowers. In the middle is a man with Down syndrome. he is wearing grey pants with blue suspenders, a light blue short sleeve button up shirt and is wearing a purple flower pinned to his shirt. On the right is the bride, dressed in a white, lacey, bridal gown and holding a bouque of purple and yellow flowers. They are standing on gravel and behind them are stairs leading up to a stone and log cabin.

Sibling Perspectives: Helping My Sibling With a Disability Navigate COVID-19

/in , /by Pam Katz

The COVID-19 pandemic continues to leave us all navigating a very uncertain and disruptive moment in our world. However, the pandemic has presented uniquely challenging experiences for people with intellectual and/or developmental disabilities (IDD) and their family caregivers. 

Caitie Jones and Cameron Kell are members of The Arc’s National Sibling Council and share how they each have been able to support their sibling navigate this unprecedented crisis.

Caitie Jones’ brother Chris is 31 years old and lives in a group home in Alaska.

Chris has severe sleep apnea, which puts him in the high-risk population. Caitie has been unable to visit Chris—and the lack of communication from his service provider brought a lot of fear and anxiety about his health. Although Caitie was able to rely on regular updates from Chris himself, she and her family remained anxious about the level of safety precautions and the health statuses of residents and staff at the group home.

To better support Chris, Caitie requested a meeting with leadership at the group home to address challenges with the lack of communications. Caitie and her family now receive weekly updates from the group home and continue to stay in touch with Chris by leaving him gifts and activities so he can stay active safely. Caitie is also a resource to the group home staff by sending them information about activities they can do to keep residents active while practicing social distancing. Caitie also notes that it’s been important for her to stay informed about legislation related to COVID-19 and advocating for the inclusion of provisions that will support people with IDD, caregivers, and disability support professionals.

Cameron Kell’s brother Nathan is 29 years old and lives in an apartment on his own in St. Louis.

Nathan works at a concession stand at the National Museum of Transportation and attends the local community college. After living on his own for nearly eight years, the pandemic has meant a life of less independence for Nathan. He was furloughed from his job at the museum and the support workers that typically helped Nathan at his apartment have not been available. Although Nathan can spend time with his family at the current family home, he feels stuck and as Cameron notes, “(Nathan) just wants to be at his own apartment.”

To better support Nathan, Cameron has been mindful about communicating with Nathan on a regular basis. Cameron sets aside time to talk to Nathan about the stress of the pandemic and to help him understand why there has been a dramatic shift in his daily routine. Since Cameron is a medical student at Creighton University, Nathan also looks to his brother as a resource about the importance of social distancing and hand washing. Cameron wants to make sure Nathan understands without scaring him and providing assurance that everything will be ok.

Visit thearc.org/covid to view COVID-19 information for people with disabilities, families, and service providers.

Woman on escalator wearing a face mask; she's holding a cell phone in one hand and her suitcase handle in the other

COVID-19 Legislation First Step in Addressing Crisis for People With Disabilities, Families

/in , , , , , /by The Arc

Washington, D.C. – People with intellectual and developmental disabilities (IDD) are facing threats to their health and wellbeing due to the global COVID-19 pandemic, and the legislation passed by Congress and on its way to President Trump’s desk is a start in addressing their needs in this crisis.

The legislation includes:

  • A 6.2% increase in federal reimbursement for state Medicaid programs (FMAP), which will help state governments in their efforts to combat the pandemic;
  • Emergency requirements for all health insurers to cover testing;
  • Expanded nutrition assistance and crucial waivers for the Supplemental Nutrition Assistance Program and school meals;
  • Expanded unemployment insurance; and
  • Limited paid sick day and paid leave provisions that do not explicitly include caregivers for people with disabilities.

“This crisis is going to have a major impact on people with intellectual and developmental disabilities, their families, and caregivers, and this legislation is a good first step in meeting their needs. As this crisis evolves, more will have to be done at the federal level for all Americans, particularly those with disabilities, their families, and caregivers,” said Peter Berns, CEO, The Arc.

The Arc is working hard with legislators to ensure that the next package more directly covers the unique needs of people with disabilities, their families and the direct support workforce:

  • An additional FMAP increase that creates a grant program to support access to home and community-based services and to support the direct support professional (DSP) workforce with better pay during the crisis, and greater flexibilities in hiring and service provision.
  • A permanent reauthorization of the Money Follows the Person program, or MFP, which gives funds to states to move people with disabilities out of segregated settings and into the community. There is a real threat to unnecessary institutionalization. The flexibilities and funds from permanent MFP will support states to continue transitions to the community and away from congregate settings.
  • Economic stimulus with increased asset limits. For people with IDD receiving Supplemental Security Income (SSI) and/or Medicaid, strict asset limits must be maintained to receive the benefits. We strongly support stimulus for low income individuals, but because of the asset limits, people with IDD may end up with too much money in the bank, jeopardizing their SSI and/or Medicaid. Asset limits should be increased or paused to ensure that people with disabilities are able to benefit from the stimulus without jeopardizing their benefits.

“Without addressing these issues, the lives of people with disabilities and their families could be altered with no turning back. People could be placed into institutions and other congregate settings in violation of their rights and posing risk to their health. Families could be more pressed to choose between a paycheck and health and well-being. And our current DSP workforce crisis could get even worse, impacting day to day life for millions of people with disabilities. We have an opportunity in the coming days to address these big issues, and we are urging Congress to act swiftly,” said Berns.

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.

The Arc logo

The Arc, Allies, and Self-Advocates Finally ‘Stop the Shock’

/in , , , , , /by Kristin Wright

WASHINGTON – After too long of a wait, The Arc celebrates a victory in our seemingly never-ending fight to underscore the value and human dignity of the lives of people with disabilities. After years in limbo, the Food and Drug Administration announced Wednesday it will finally ban the use of the electric shock device that has inflicted painful abuse on residents of the Judge Rotenberg Educational Center (JRC) in Canton, Massachusetts for decades. JRC is an institution for children and adults with intellectual and developmental disabilities and mental health issues.

By the FDA’s own count, as many as 50 JRC residents wear the shock device. Staff members use remote controls to administer shocks for perceived misbehavior. JRC uses the barbaric and inhumane practice, despite substantial evidence that the shocks are painful and traumatizing to residents.

“The Arc and The Arc of Massachusetts, alongside several disability rights organizations and empowered self-advocates across the country, fought for decades to ‘stop the shock’ and to end abusive and cruel practices masquerading as ‘behavioral treatments.’ People with disabilities deserve to live free from fear and torture. The FDA’s decision, years in the making, to ban the use of the electric shock device is a hard-fought victory and a testament to what is possible when disability advocates fight their hardest for change and for the civil rights of people with disabilities. We hope the ban is a significant step in ending the use of all aversive procedures on people with disabilities, who deserve to be supported with dignity,” said Peter Berns, CEO, The Arc.

A woman in a floral bathing suit lays in a beach chair by the pool, smiling

This Black History Month, We Salute Lois Curtis

/in , , /by Pam Katz
A woman in a floral bathing suit lays in a beach chair by the pool, smiling
Lois relaxing by the pool

This Black History Month, we celebrate the life and legacy of our African American heroes. They endured, persisted, and paved the way – for us all.

The Arc salutes Lois Curtis. Ms. Curtis’ bravery and refusal to live behind the dark walls of a state institution led to the landmark U.S. Supreme Court Olmstead v. L.C. decision in 1999. The case established that unjustified segregation of people with disabilities is a form of discrimination under the Americans with Disabilities Act – and that people with disabilities have a right to live in the community rather than institutions.

More than 20 years after Ms. Curtis returned to the community, she is living life to the fullest.

“I am doing pretty good,” Ms. Curtis tells The Arc.

She lives in her own home near Atlanta, Georgia. Ms. Curtis, 52, has a new and blossoming passion for singing and song writing. She enjoys writing original songs and her own versions of Motown hits. Ms. Curtis records at a local recording studio and takes keyboarding lessons. She is also invited to sing for groups in the Atlanta area.

Ms. Curtis says singing makes her feel good and reminds her of good memories with her mother.

These days, Ms. Curtis travels often with her family and direct support professional. She enjoys vacationing in Florida and her family is currently planning a trip back to Miramar Beach.

She loves church, going to the movies, shopping, getting her nails done, and going out to eat. Her favorite cuisine is Mexican.

Ms. Curtis’ longtime direct support staff Pertula Mark says it is a joy to see her happy. There are some tough days when Ms. Curtis talks about her time living in the institution or runs into people she knew at the facility.

Despite the pain of the past, Ms. Curtis, Olmstead co-plaintiff Elaine Wilson, who died in 2005, and attorney Sue Jamieson inspire us all to keep fighting for inclusion, community living, and equality for people with disabilities.

Thank you, Ms. Curtis!

The Arc logo

Threats to Medicaid and Social Security Resurface; The Arc Poised to Defend Critical Programs

/in , , , /by The Arc

Washington, D.C. – As reports circulate of further attacks on Medicaid and Social Security — programs that are vital to the quality of life for people with intellectual and developmental disabilities (IDD) and their families — The Arc is preparing for battle to stop these threats in their tracks. Federal agencies have proposed regulatory changes to cut the Medicaid and Social Security programs, and just this week President Trump made comments to CNBC highlighting plans to cut these programs “toward the end of the year.”

Medicaid and Social Security could be on the chopping block. Yet these programs are essential for the health, well-being, and community inclusion of millions of people with IDD and their families. Medicaid is the nation’s primary health insurance program for people with disabilities, and funds vital supports to keep them in their communities. Social Security insures individuals and family members for when a worker retires, dies, or acquires a qualifying disability. Many people with disabilities depend solely on their Social Security or Supplemental Security Income (SSI) benefits and related health coverage for their basic survival. Social Security Disability Insurance (SSDI) assists workers with qualifying disabilities, their children, and spouses. All of these programs are important to people with IDD and their families.

“Cutting Medicaid and Social Security would be devastating for people with intellectual and developmental disabilities and their families, and we will fight with everything we have to protect these critical programs. There are millions of people with disabilities, their parents, siblings, family members and friends who all agree — we can’t turn back the clock on 70 years of progress we have made in including people with IDD as valued members of our community and supporting them to realize their full potential. People with intellectual and developmental disabilities should have the opportunity to live fair, full, and promising lives, and have access to the services, supports, and income support to do so,” 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.

Couple hugging outside both with eyes closed

Paid Leave for Federal Workers Approved by Congress but Falls Short for Disability Community

/in , , , , /by The Arc

Washington, D.C. – This week, Congress approved 12 weeks paid parental leave for federal workers caring for newborns, newly adopted children, and foster children, but the benefit falls short. Federal employees with disabilities and their family members need paid time off for their own medical needs and for caregiving for reasons beyond welcoming a new child and we are disappointed that the country’s largest employer now has a paid leave policy that does not include these crucial components.

“We are somewhat encouraged to see Congress take a small step in the right direction, but this paid parental leave policy is not enough. We need comprehensive paid leave for everyone that works for everyone, including people with disabilities and their families. We will continue to advocate for the needs of the disability community in paid leave – Congress can and should do more,” said Peter Berns, CEO, The Arc.

In the U.S. workforce, only 1 in 6 workers has access to paid family leave to care for a family member with a serious health condition. Roughly 2 in 5 workers report they lack access to any paid leave. People with disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment that can render the financial impact of unpaid time off particularly devastating.

Comprehensive paid leave increases opportunities to take time off for a serious medical condition or to care for someone with a serious medical condition without seeing a sharp drop in income or putting one’s job or employer-based health insurance at risk. In addition, it can increase access to preventive care, such as going to doctor’s appointments, and lead to better overall health and well-being. Access to paid family and medical leave can help workers balance their personal care needs while working and providing support to a family member.

“Our expectation is that the federal government set the tone for other employers to enact paid leave policies that work for everyone. We will keeping fighting on this issue so that workers with disabilities and families that include people with disabilities one day have the comprehensive leave they need to contribute in the workforce and take care of their families,” said Berns.

The Arc has cultivated several national partnerships to bring the issue of paid family and medical leave further into the public spotlight and advocate on the federal level. Learn more about our work.

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.

The Importance of Self-Advocacy: From China to The Arc’s National Convention

/in , /by Pam Katz

By Holly Miller

Disability Advocacy Scholar, The Arc

Holly with walkaround Julia, Muppet from Sesame Street

My passion for advocacy has grown stronger over the years and is taking shape as I learn more about the importance of fighting for your rights, no matter who you are.

I am a postgraduate student of political theory in Shanghai, China, pursuing a Master of Law degree. I am currently working on my thesis titled “Autistic Voices in China— A Critical Disability Research.”

My life experience as an autistic woman, growing up in Michigan, has guided my academic studies and understanding of the importance of self-advocacy for me and other people with intellectual and developmental disabilities (IDD).

In October 2019, I flew from Shanghai to the U.S. for The Arc’s National Convention in Washington, D.C. The Arc awarded me a Disability Advocacy scholarship to attend the annual convention for the first time. It was an amazing opportunity to connect with other self-advocates and to continue to learn and grow.                                              

We were encouraged to attend sessions at the convention to learn about issues affecting people with disabilities and their families. My favorite session was “Supporting People with Intellectual and Developmental Disabilities (IDD) to Make Their Own Decisions.” I learned how to advocate for myself in new ways and how other people with IDD can learn to support themselves. I think it is vital that we all have the opportunity to live independently. I attended this session to learn more for my future career in disability advocacy.

Holly, left with Julia Bascom, Autistic Self Advocacy Network Executive Director

I also enjoyed an interactive session called “National Council of Self-Advocates: Everyone Votes!” I already know a lot about voting but during this session I got the chance to learn even more about why voting and raising issues impacting the disability community is so important. This session was especially powerful for those in the room who had never voted. As American citizens, we all have the right to vote!

The Diversity Breakfast was another highlight of the convention. It was interesting to hear concerns from other self-advocates and how their advocacy has made a difference. At the breakfast, I met others who are as interested in advocacy as I am, which put me at ease at my first convention.

I became interested in self-advocacy after giving several presentations in college about my life growing up autistic. I hope to one day help others with IDD fight for their right to make their own decisions and live in the community with appropriate supports and services.

I have enjoyed advocating alongside The Arc – all the way from China – and learning from the organization how to be the best advocate I can be. The Arc listens to me. I am looking forward to working together to advocate for all people with IDD and their families.

The Arc logo

The Importance of Paid Leave: A Sibling Perspective

/in , , , /by Pam Katz

By Nayma Guerrero, Member of The Arc’s National Sibling Council

My family is everything.

Nayma and her family

My younger brother is 23 years old. He loves computer science, animation, and art and design. He also enjoys working out at the gym. Things are sometimes challenging for my brother, who has autism, intellectual disability, attention deficit disorder, and depression. Then there’s my sister. Like many 14 year olds, she loves the mall. She also plays soccer and basketball, and likes playing with her dolls. I admire my sister for sticking to it at school, despite having learning disabilities.

Like a lot of families, the day starts at my parents’ house in controlled chaos. My mother takes on what seems like the biggest challenge of the morning shared by moms everywhere: getting my brother and sister out of bed! A true supermom, my mother helps both of them get their school clothes together and makes sure they eat breakfast every day. She truly believes breakfast is the most important meal of the day. After they eat, my mother drives my brother and sister to school before taking care of the grocery shopping and errands.

Both of my parents are very hard workers and make sure my siblings’ needs are met every day. My father works fulltime, so my mom is usually the one who is taking care of my brother and sister.  My brother requires a lot of care, attention, and daily reminders to make sure he’s dressed, gets to school on time, and takes his medication.

A few years ago, my mother ended up in the emergency room. It turned out to be life threatening. My mother needed emergency surgery. We were shocked and worried as any family would be. After her surgery, we were told my mother would need to be on bed rest for about two weeks minimum with little movement. She would need a lot of assistance to get around the house, use the restroom, and shower. We were concerned for my mother but also for my siblings.  My mother is the person my brother depended on the most. And my sister was only 10 at the time.  

My father and I realized it was up to us to help my mother, my brother, and sister. For my father, taking time off meant he didn’t get paid and it was already hard for my family to make ends meet – still is.  I was also working hard, but not getting full time pay or health benefits of any sort. I was working just under 40 hours a week and therefore, part time. Calling off also meant no pay for me. It was really hard for my father and myself to work out a schedule where we could both help my brother with his needs and care for my little sister and my mother. It was also hard because my brother has a difficult time trusting other people, so he needed us. Sometimes, there is just no substitute for family.

Now imagine what it was like for us to shift to relying on one income – we had to save every penny for rent and bills, that’s it. I didn’t know how I was going to make my car payments. We were barely getting by.

Paid leave from our jobs would have helped my family at a time when we needed it most. If I would have had access to paid leave, I would have been able to help my family without losing my pay. My father wouldn’t have had to call out of work with no pay and risk losing his job. I also wouldn’t have had to go some days without pay. I was also scared that my job was going to fire me because I had to call out. With paid leave, we would have been able to provide my brother and sister with better care, while my mom recovered from surgery.

There are many families like mine. When the unexpected happens, family members need to be able to be there for each other – and still keep their jobs.  The U.S. needs a paid leave system so that families like yours and mine can care for loved ones when they need our help.

map of the united states created by various shades of blue figures

#becounted

/in , , /by Pam Katz

Are you ready to be counted? The 2020 Census is coming up and it is critical for people with intellectual and developmental disabilities (IDD) and their families. The census seeks to include every individual living in the United States, but many people with disabilities are historically left out of the count—harmfully impacting funding, services, and supports.

Census data helps guide the distribution of more than $800 billion in federal funding. The count, conducted every 10 years, is also directly tied to key funding streams that support people with disabilities to live in the community, instead of institutions. It determines political representation and affects public policy, as well as programs and supports in housing, voting, education, health care, and public health. The Census Bureau recognizes people with disabilities as a hard-to-count population, meaning that they may not be fully represented in the count, and that the programs that are important to them may not receive the consideration they deserve.

The Arc is excited to announce a major initiative to find solutions. We are pleased to share that we have received a grant from the Ford Foundation to launch a project to help ensure that people with disabilities are counted in the 2020 Census. We recognize the Ford Foundation’s generosity and engagement in the fight for disability rights.

In planning for Census 2020, The Arc will develop and share materials to motivate and inform people with IDD to respond to the count in order to produce more complete and fair data. Our outreach will include our chapter network and membership, and partnerships with national disability groups and advocacy organizations. 

The Arc has also joined the Census Bureau’s National Partnership Program to help raise awareness, share resources, and work together to ensure that all people are counted in 2020.

#becounted

All of our materials will be posted at thearc.org/census – please check back soon!

The Arc logo

New Videos From The Arc Spotlight Need to Close Institutions, Support Community Living

/in , , /by The Arc

In 2019, 37 states still have institutions where people with intellectual and developmental (IDD) live away from their families and communities. Some may recall the horrible investigative reports over the last few decades that showed the terrible conditions in institutions, but many people fail to realize the facilities still exist and that state and federal dollars are still funding them. The Arc of the United States was founded by families trying to eliminate the need for those institutions and to get their family members with disabilities back home and included in their communities. While we have come a long way, there remains much to be done from state capitals to our nation’s capital.

The Arc developed this video to highlight the issue and to educate the general public about institutions, and to urge action to close the remaining institutions and support people with disabilities, no matter their level of need, back into the community.

At The Arc we also understand that it is more important than ever that we educate the general public about why inclusion and acceptance matters and that they join the fight to ensure that the progress that we have made as a disability community is not stalled.

We have to talk about the fact that institutions remain open, and how those dollars would be better spent in the community. We have to educate the general public about how Medicaid makes life in the community possible. We have to protect Medicaid from threats of cuts and caps that would drastically hurt people with IDD.

To illustrate community living, check out our new video.

On the policy front, we have to talk to state and federal legislators about the fact that the federal Medicaid law that we fought so hard to save just a few years ago needs a face lift. Right now, services in institutions, nursing homes and other more segregated settings are mandatory while home and community-based services (HCBS) are optional under the law.

These are complex issues, but the basic fact remains everybody benefits when people with disabilities are part of the fabric of their communities. That doesn’t come by keeping people locked away in institutions – it comes through conversation, inclusion and acceptance that we are all better together.