The Arc Responds to the Trump Administration’s Final Rule on Short-Term Limited Duration Insurance

Today, the Department of Health and Human Services released the final “short-term plan” rule. These “short-term plans” can provide hollow coverage with hidden gaps for those who sign up. Expanding short-term plans will raise premiums and reduce plan choices for individuals and employers in the regular insurance market.

The proposal expands availability of a group of products that may implement discriminatory practices. This will likely draw healthier individuals off the Marketplace by offering them skinnier, medically-underwritten products, which will inflate prices and out-of-pocket costs on the Marketplace. The Arc believes that insurance coverage must ensure access to timely, affordable, high quality, and comprehensive health care that meets the needs of individuals with disabilities and chronic conditions.

Expanding access to short-term plans will move us even further away from achieving these goals. Short-term plans are not subject to consumer protections that have tremendous value for individuals with disabilities and chronic conditions, such as mandated essential health benefits, protections for people with pre-existing conditions, prohibitions on use of lifetime or annual caps, and other non-discrimination provisions.  For these reasons, The Arc, in partnership with a coalition of other disability rights organizations known as the Consortium for Citizens with Disabilities, released comments earlier this year opposing this rule.

“The Affordable Care Act ended the practice of discriminatory health insurance practices; this rule allows insurance companies to once again set higher premiums based on health conditions. This limits access to comprehensive coverage and that will have a dire impact on people with significant health issues, like individuals with chronic illness and disabilities.

“Make no mistake, today’s final rule undermines current law and puts Americans with pre-existing conditions at risk. We remain steadfast in our commitment to protect the Affordable Care Act and the benefits it provides for people with disabilities,” said Julie Ward, Deputy Executive Officer for Public Policy, The Arc.

The Arc Celebrates the 28th Anniversary of the Americans with Disabilities Act

ADA Bday Graphic

Today, marks the 28th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

“Today we celebrate one of the greatest victories for people with disabilities in America. Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation like the ADA. The passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates. While today we celebrate, we must also recognize recent threats to the ADA and the need for unity in our community. The Arc played a leadership role in the passage of the ADA nearly three decades ago and we remain committed to everything this landmark law stands for. We will actively oppose any attempts to weaken or dismantle the ADA,” said Mary Ford, Senior Executive Officer of Public Policy, The Arc.

REV UP for National Disability Voter Registration Week, July 16-20

July 16-20, 2018 is National Disability Voter Registration Week (NDVRW)! The REV UP Campaign, organized by the American Association of People with Disabilities, coordinates NDVRW each year to get people with disabilities registered to vote, educated about the upcoming election, and ready to cast their ballots. REV UP stands for Register! Educate! Vote! Use Your Power! The campaign aims to increase the engagement of the disability community around voting. Across the country, many chapters of The Arc are coordinating events in their communities for NDVRW in partnership with REV UP.

NDVRW is especially important this year because 2018 is big election year, with elections on the federal, state and local levels. People with disabilities have powerful potential to make their perspectives heard by voting. According to a research report from Rutgers University, there were 35.4 million eligible voters with disabilities in 2016. When we include family members of people with disabilities, the disability community makes up 25% of the total electorate. Yet, people with disabilities often face barriers to voting which often leads to the registering and voting in lower numbers than people without disabilities. Let’s change that!

Ready to celebrate NDVRW and make your voice heard? Here’s how you can get involved:

Image says "Register to vote today: National Disability Voter Registration Week July 16-20" and shows a pen filling in a voting ballot.

  • Register to Vote – Make sure you are registered to vote and your registration is up to date.
  • Register your Friends – Spread the word! Make sure your family and friends are registered to vote, too.
  • Find Out More – Registering is just the first step! To learn more about state laws, where to vote, specific elections, and more, visit The Arc’s Know Your Right to Vote webpage and Self Advocates Becoming Empowered GoVoter site.

 

 

The Arc Responds to Trump Administration’s Latest Assault on the Affordable Care Act

Yesterday, the Trump Administration announced funding cuts to programs that assist people enrolling in health insurance. It would result in severe cuts to the Navigator program totaling more than $25 million. Specifically, the funding cuts would decrease the program budget from $36.8 million this year to $10 million in 2019.

Health Care Navigators provide in person assistance to individuals as they enroll in health insurance plans. Programs like this provide essential support to individuals with intellectual and developmental disabilities (I/DD) and others who are seeking support as they enroll in health insurance plans.

“The Navigator program provides important support to individuals with intellectual and developmental disabilities who are dealing with the complexities of finding the right health insurance program to fit their unique needs. Slashing the program creates additional barriers to enrollment in health insurance. This funding cut highlights intent of the Administration to undermine access to health insurance for millions of people with disabilities.

“We remain steadfast in our commitment to protect the Affordable Care Act and the benefits it provides for people with disabilities. Our hope is that Members of Congress will realize the dire impact that funding cuts to this program will have in their states and remedy the situation,” said Marty Ford, Senior Executive Officer of Public Policy, The Arc.

Food Assistance for Millions with Disabilities Protected: The Arc on House Voting Down the Farm Bill

The Arc released the following statement after news that the Agriculture and Nutrition Act of 2018, also known as the “Farm Bill”, failed to pass the United States House of Representatives. The Farm Bill reauthorizes farm programs and policy as well as the Supplemental Nutrition Assistance Program (SNAP).

“The current version of the Farm Bill was just the latest attack on programs that people with intellectual and developmental disabilities rely on. If enacted as is, the Farm Bill voted down by the House today would have cut basic food assistance for children, adults, and seniors who are struggling to put food on the table. We are grateful to Members of Congress who recognized what this legislation would have meant for their constituents and voted no.

“We fundamentally disagree with the notion embedded throughout the proposed bill that some people are more “deserving” of basic food assistance than others. Approximately 11 million people with disabilities across the United States rely on SNAP to help them eat. Cutting off SNAP – including through new and harsher work and reporting requirements – would only make it harder for people with disabilities and their families to access the food they need to work and to survive. If policymakers want to increase employment, Congress needs to make major new investments in job training and supports and services for job-seekers with disabilities and their families – not cut off their basic food assistance.

“We are relieved that the current version of this legislation was not passed, but recognize there is still work to do. The Farm Bill has a long history of bipartisan collaboration and support. Our hope is that Congressional leaders will work together to develop a bipartisan proposal for reauthorizing the Farm Bill that strengthens and protects SNAP,” said Marty Ford, Senior Executive Officer of Public Policy, The Arc.

On net, the bill voted on by the House today proposes deep cuts to food assistance under SNAP. As taken up by the full House, an estimated 2 million people would lose their SNAP food assistance or see their benefits reduced under the bill.

  • The bill would significantly expand SNAP’s existing work requirements, forcing SNAP beneficiaries age 18 to 59 to engage in work or job training activities for at least 20 hours per week. The bill’s exceptions for people raising very young children or supporting a family member who is “incapacitated” (as stated in the bill) are likely to prove woefully inadequate and extremely difficult for people with disabilities to navigate. Ultimately, these new requirements would cause many people to lose their food assistance, making it harder for them to work, based on experience with existing work requirements in SNAP and other programs.
  • While the bill calls for greater access to job training programs, new federal investments would be funded largely by cuts to SNAP food benefits, and analysis by the Center on Budget and Policy Priorities indicates that funding levels for job training would be highly insufficient.
  • The bill also includes extensive new reporting requirements with harsh consequences if a person misses a deadline.

Fostering Community Connection through Comcast Cares Day: The Arc of Macomb County

Executive Spotlight

Lisa Lepine

The Arc of Macomb County

Clinton Township, MI

For over 15 years, Comcast Cares Day has provided an opportunity for Comcast NBCUniversal staff to volunteer their time with non-profits, schools, parks and other organizations to a positive impact within their local communities. Once again this year, chapters of The Arc across the country partnered with ComcastUniversal – and The Arc of Macomb County was one such chapter. Lisa Lepine, the chapter’s executive director, chatted with us about her chapter’s work and the value of inclusive volunteering.

  1. Tell us about your project for Comcast Cares Day! What type of project did you do? Are there any other community entities or groups that you partnered with? How many people did you impact in your community?

    Approximately 50 Comcast volunteers, from ages 6 to 60, spent Comcast Cares Day with more than a dozen employees, board members, and clients of The Arc of Macomb. The Arc of Macomb serves several hundreds of people per year, including operating a day program, organizing community outings, and providing employment services for people with developmental disabilities. Comcast volunteers organized the project of removing landscape rocks and weeds, installing barriers, and replacing the rocks; cleaning other landscaping and hardscaping; and repairing and painting walls inside the building. Some of Comcast’s employees drove almost two hours to attend the event! Several of the younger volunteers painted rocks to distribute throughout the grounds, beautifying the appearance for The Arc’s employees and clients. Both frequent and new visitors have appreciated and commented on the improvements from Comcast’s volunteers.
  2. How did you get connected with Comcast?

    The Arc of Macomb has used Comcast Business for its internet and phone systems for approximately four years. The Arc chose Comcast for its reputation for reliability and service.  Although occasional outages are unavoidable, Comcast has consistently provided accurate estimates of expected downtime and repairs, enabling The Arc to effectively allocate its resources during interruptions in service. Comcast’s on-site technicians have been helpful, timely, and worked well with The Arc’s IT company to keep things running smoothly.
  3. Why do you think it is important to engage in inclusive volunteering in your community?

    The Arc of Macomb’s mission is to help people with disabilities and their families engage meaningfully in their communities. Volunteerism – from everybody! – is an important and inclusive way for people to interact with people in their communities, particularly with people whom they might not otherwise meet. Volunteer events like Comcast Cares Day fosters connectedness among people in a community and thereby strengthens the community in immeasurable ways.
  4. What advice do you have for other chapters and organizations looking to get involved in inclusive volunteer opportunities?

    Many people want to volunteer in their community, but they don’t always know exactly how. Conversely, organizations always want volunteer help, but the volunteer opportunities they have don’t always line up with the volunteers’ availability. Comcast’s organizers scheduled a clearly defined date and time a few months in advance, held a pre-event planning meeting a few weeks before the event, clearly communicated the details of our organization and of the event, and obtained the necessarily materials in advance. The planning of the event, combined with the communication of the details of the organization and of the event, were critical to the success of the event. Going forward, most volunteerism will be centered on a clearly defined event, with clear and concise descriptions of the organization and the event.

See more photos from The Arc of Macomb’s volunteer day.

 

Answering the Call to Service: Promoting Inclusion through Community Volunteering

For The Arc, the quote from Martin Luther King, Jr. – “Everybody can be great because everyone can serve” – has a special meaning. Many perceive people with disabilities as the ones in need of service – but in reality, they are an important part of civic engagement at the state, local, and national levels. That’s why we’re grateful to have been selected for a third year by the Corporation for National and Community Service to execute volunteer projects for the annual Martin Luther King, Jr. Day of Service.

We issued grants to 12 of our chapters across the country to engage in events that addressed the problem of food insecurity in communities across the country. Events included sandwich-making competitions, donation cook-offs, food drives and delivery, and food bank volunteer events. Each chapter’s creative and engaging projects helped further our mission of community inclusion and participation for people with intellectual and developmental disabilities.

 “I think it is very important as citizens and self-advocates that we show we care about the needs of people around us by getting outside our own routines and giving our time and energy to the Martin Luther King projects… I was very happy to serve in whatever way I was able to such a good cause and project.” – Sean Lewis, President of Tulsa People First in Oklahoma

Our 2018 grantees included The Arc of the Glades (FL), The Arc of Nature Coast (FL), The Arc of South Carolina, The Arc of Northeastern Pennsylvania (PA), The Arc Rockland (NY), The Arc of Kent County (MI), The Arc of the Quad Cities Area (IL), The Arc of North Texas (TX), TARC (OK), The Arc of Davidson County and Greater Nashville (TN), The Arc of Lane County (OR), and Choices for Community Living – Delaware (a subsidiary of Liberty Arc (NY).

Inclusive volunteering gives people with and without I/DD the opportunity to meet new people in the community while helping those in need. These new connections can lead to long-lasting friendships that impact not only community members being served by the volunteers but the volunteers themselves. The projects also have led to building job skills and new community partnerships. Volunteering truly is a win-win for everyone involved! To date, chapters have collectively done 4,285 hours of service with 762 volunteers and helped 10,609 people. Congratulations to each chapter on their 2018 events so far – and stay tuned on each chapter’s social media as they continue to host events in their communities.

Martin Luther King, Jr. also said: “Life’s most persistent and urgent question is: what are you doing for others?” In our chapters, people with and without disabilities continue to answer this call to service year after year.

 

Learn more about The Arc’s volunteering efforts at thearc.org/inclusive-volunteering.

#HandsOff Supplemental Security Income – It’s the Difference Between Life in the Community or Life in Isolation

#HandsOff is a series on The Arc’s blog that features a new story each month from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Steve Grammer

Steve Grammer faces the camera and is wearing a red shirt and jeans. My name is Steve, I live in Roanoke, Virginia and I have cerebral palsy. I like to do the kinds of activities many people do — go out to the mall, restaurants, concerts, bars, and travel to places like the beach. I am an advocate with people with disabilities, I go to a lot of events to talk with members of the legislature and other government officials. I recently attended an event with U.S. Senator Kaine, and a Town Hall Meeting with Delegate Rasoul. I also serve on several state boards.

I have a lot of expenses due to my condition. In order to live in the community in my own apartment, I have to have caregivers assist me in daily activities that most people don’t think twice about. They help me with everything from healthcare, making phone calls, administering medications, meal prep and eating, housekeeping, and they accompany me to events in the community.

I receive Supplemental Nutrition Assistance Program (SNAP) benefits to help me pay for food, but sometimes it’s not enough to cover my groceries. I also have Supplemental Security Income (SSI) that I use to pay for rent, transportation, personal hygiene, and other bills.

SSI helps me to have a decent life in the community — like everyone deserves.  As someone who lived in a nursing home for nine years, I know how important that is. Living in the community, I am more independent. I can set up my own schedule, I know I will get good care, as I get to choose who I want to take care of me through Consumer Directed Services. I’m able to choose what and when I want to eat versus not knowing when, what or if, I will get fed (not to mention being rushed to eat in the nursing home).

I’m able to use the restroom when I want without waiting an hour or more for someone to answer my call light.  I can sleep at night, go to bed when I want, versus having to use ear plugs every night because of other residents, or loud staff.  If I have transportation I can be out in the community as late as I want without having to sign in and out of the nursing home and having to be back before midnight.

SSI gives me this independence. That is my only income. If the government decreases it or takes it away from people with disabilities, we cannot survive. Without SSI, many people with disabilities — like me — would end up back in institutions.

I strongly encourage the government to think about this very carefully and not make any type of cuts to SSI. Please do not take our independence away from us.

 

 

Community Matters for ALL

By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States

What is important to YOU about community living?

Share your story!

During the recent fights to save the Medicaid program from devastating cuts and fundamental restructuring, the home and community based services (HCBS) that individuals with disabilities and their families rely on were in greatest jeopardy. These services include everything from residential supports, day supports, and employment services, to personal attendant care. This is because under federal Medicaid law, HCBS are OPTIONAL while other services such as institutional services are MANDATORY. So if the cuts included in the recent health care bills would have made it down to the state level, HCBS would have been the first thing on the chopping block. This new reality would have been devastating to individuals and families.

Those HCBS dollars are the ones that, over the last several decades, have funded the desperately needed shift from institutional placements and segregated services for individuals with disabilities to a full life in their communities.

Community Matters!

I have been lucky in my life to be a part of a community that involved all individuals in every aspect of the community, including my brother Chris who has autism. Chris is 28, lives in Illinois and receives Home and Community Based Services through the Medicaid program to remain in the same community where he has lived his whole life.

Not only do HCBS benefit the individuals with disabilities who receive them to stay in their community, it benefits every community member. Because of the services that Chris receives he is able to live in his home, do things that he chooses during the day out in the community, interacting with people who do not have disabilities, and gets the support that he needs to communicate through typing. Chris has a full life, and Medicaid HCBS have made that possible. However, it is never lost on me that if Chris had been born 20 or 30 years earlier, his life would most likely look very different because of his significant level of needs. Chris would have languished in an institution, away from his family, friends and his COMMUNITY never learning to express his wants, insights and amazing sense of humor. This knowledge is why I feel so passionately about making life in the community a reality for all individuals with disabilities, no matter their level of need.

The disability community showed our strength during the fights to protect Medicaid, and now we must rise up again to show the importance of ensuring that HCBS dollars are spent in the community and not in settings that isolate individuals from interacting with all parts of their communities. We need to show that life in the community is possible for ALL! The best way to send that message is to share stories about why community matters in YOUR life, and what your life looks like in the community.

Chris has already written his own story and submitted it, please take a moment to do the same. You can enter your information here. We will use these stories to show the need to increase the investment in HCBS dollars and to ensure that capacity is built to support every individual in their communities.

Boston University Sargent College and The Arc of the United States Approved for $50,000 Funding Award by the Patient-Centered Outcomes Research Institute

(Boston) – Jessica Kramer, assistant professor of occupational therapy at Boston University College of Health & Rehabilitation: Sargent College and The Arc of the United States have been approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI). The award will support a project identifying the mental health research priorities of young adults with intellectual and/or developmental disabilities (I/DD).

Kramer and The Arc will use the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of individuals and groups who share a desire to advance patient-centered outcomes research focused on finding optimal treatment approaches for young adults with I/DD. Self-Advocates Becoming Empowered (SABE) will also play a significant partnership role in this project.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.

This project will build a national partnership between young adults ages 18-30 with I/DD and their families, service providers, and researchers to identify mental health research priorities for young adults with I/DD. This partnership will seek consensus on mental health priorities and corresponding intervention needs for further exploration. Kramer and The Arc’s vision is to establish a sustainable partnership that is poised to engage in patient-driven mental health research that will improve support and facilitate the lifelong wellbeing of people with I/DD.

“The Pipeline to Proposal Awards program is a manifestation of PCORI’s commitment to the meaningful involvement of patients, caregivers, clinicians, and other stakeholders in all our research endeavors,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer. “It provides support to those who may not otherwise have an opportunity to contribute to the field of comparative effectiveness research. We’re pleased to follow the awardees’ progress as they develop partnerships and begin to form research questions.”

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

 

CONTACTS:

Boston University College of Health & Rehabilitation: Sargent College
Stephanie Rotondo, (617) 353-7476, rotondos@bu.edu

The Arc of the United States
Kristen McKiernan, (202) 534-3712, mckiernan@thearc.org

 

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Boston University LogoBoston University College of Health and Rehabilitation Sciences: Sargent College is an institution of higher education which fosters critical and innovative thinking to best serve the health care needs of society through academics, research, and clinical practice. As reported by U.S. News and World Report, its graduate programs in Speech-Language Pathology and Physical Therapy rank in the top 6% of programs while Occupational Therapy is #1 in the nation. The College has more than 25 on-campus research facilities and clinical centers and offers degree programs in occupational therapy, physical therapy, speech, language and hearing sciences, health science, athletic training, human physiology, behavior and health, and nutrition. For more information, visit bu.edu/sargent.

Founded in 1839, Boston University is an internationally recognized institution of higher education and research.  With more than 33,000 students, it is the fourth-largest independent university in the United States.  BU consists of 17 schools and colleges, along with a number of multi-disciplinary centers and institutes integral to the University’s research and teaching mission. In 2012, BU joined the Association of American Universities (AAU), a consortium of 62 leading research universities in the United States and Canada.

 

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.