July 2018 #HandsOff Blog: Medicaid & SSI Equal Independence

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

 

Meet Samera! Samera is 27 years old, a poet, and likes to read books, go to concerts, and spend time with her friends and family. She lives in a home in her community, supported by The Arc of Baltimore.

This month America celebrates its independence, but for Samera and many people with disabilities across the country, programs like Medicaid and Supplemental Security Income (SSI) mean independence.

Samera says, “SSI and Medicaid help me to live in the community with independence. SSI helps to pay for my transportation to run daily errands, go to church, and cover the costs of medications and personal items that Medicaid doesn’t cover. Medicaid covers my wheelchair, and because it covers my wheelchair, I’m able to get around and go out, meet new friends, and do all of the things that everyone enjoys doing.”

Check out the video below to learn more about Samera:

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 Partners with the Vera Institute of Justice on National Initiative to Improve Police Responses to Persons with Mental Health and Developmental Disabilities

People living with mental health disabilities and/or intellectual and developmental disabilities (I/DD) are disproportionately represented in contacts with law enforcement and other first responders, as well as in every part of the criminal justice system, including jails and prisons. While people with I/DD comprise 2 to 3 percent of the general population, they represent 4 to 10 percent of the prison population.

Interactions with law enforcement can be extremely harmful to community members with disabilities. These interactions are also challenging for responding officers, who do not always have the tools or resources to understand disability. Conservative estimates show that at least 10 percent of calls to police involve people who have mental health disabilities and that 50 to 80 percent of police encounters involve persons with some type of disability. In response to this critical need, the Vera Institute of Justice—in cooperation with the Bureau of Justice Assistance (BJA) and in partnership with a consortium of organizations, including The Arc—is launching Serving Safely: The National Initiative to Enhance Policing for Persons with Mental Illnesses and Developmental Disabilities. This new initiative is designed to promote collaborative responses for people with mental health disabilities and I/DD who come into contact with the police to improve outcomes and the safety of all parties.

Through Serving Safely, The Arc, Vera, BJA, and other partners will work together to minimize unnecessary detention and incarceration of persons with mental health and developmental disabilities, strengthen connections to community-based supports and services, and grow meaningful partnerships between law enforcement agencies and the communities they serve.

The Arc has a long history of work in the criminal justice field and is thrilled to be partnering with Vera on this project. In 2013, The Arc created the National Center on Criminal Justice and Disability® (NCCJD®). This is the first national center of its kind serving as a bridge between the I/DD community and criminal justice community that focuses on both victim and suspect/defendant/incarcerated person issues. The Center provides training and technical assistance; resources for professionals, people with disabilities, and their supporters; and educates the public about the intersection of criminal justice reform and the advancement of disability rights. Pathways to Justice®, NCCJD’s signature training curriculum, is a comprehensive, community-based training program that helps criminal justice professionals—including law enforcement—understand disability, disability culture, and professionals’ legal obligations toward the disability community.

NCCJD is building the capacity of the criminal justice system to respond appropriately to gaps in existing services for people with disabilities, focusing on people with I/DD, who often remain a hidden population within the criminal justice system, with little or no access to advocacy supports or services. Vera will be partnering directly with the experts and staff that run NCCJD on Serving Safely.

Other key partners on the project include:

  • American College of Emergency Physicians
  • CIT International
  • National Alliance on Mental Illness
  • National Disability Rights Network
  • Prosecutors’ Center for Excellence
  • Dr. Amy Watson, University of Illinois, Chicago
  • Dr. Michael Compton

Serving Safely has already started to accept requests from law enforcement agencies for training and technical assistance at www.vera.org/projects/serving-safely/training-and-technical-assistance. If you are interested in learning more about The Arc’s role in the Serving Safely initiative, please email NCCJDinfo@thearc.org.

About The Arc
The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, and cerebral palsy. The Arc has a network of nearly 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.

About the Vera Institute of Justice
The Vera Institute of Justice is an independent nonprofit national research and policy organization working with governments to build and improve justice systems that ensure fairness, promote safety, and strengthen communities. For more information about Serving Safely and the Vera Institute of Justice, see www.vera.org/projects/serving-safely.

The Arc Responds to the Department of Education’s Rescinding of Affirmative Action Guidance

Last month, the Trump administration rescinded guidance the Department of Education provides to colleges, universities and K-12 schools on how they can use race and ethnic background in admissions decisions to promote diversity. The Arc has released the following statement in response to the Trump Administration’s actions:

“This is the latest of a series of moves that shows this Administration’s intentions to chip away at the instruments that have been put in place to increase equity and access to quality education for our country’s most vulnerable populations.

“Two weeks ago, The Department of Education and the Department of Justice delayed by two years a regulation intended to prevent race-based imbalances in pre-school and K-12 education for students with disabilities, a regulation whose delay was opposed by the vast majority of parents, students and administrators who submitted public comments.

“Earlier this year, the Administration also indicated its intent to rescind a guidance package to prevent racial disproportionality in public school discipline. While guidance documents are non-binding practical tools that help school systems follow the law, the Trump Administration’s collective actions make clear that it is scaling back efforts made by previous administrations to encourage diversity in our schools. This is a troubling trend in policymaking that may lead to poorer education outcomes for many Americans with and without disabilities,” said Marty Ford, Senior Executive Officer of Public Policy, The Arc.

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.

July Executive Spotlight: Christiano Sosa, The Arc of Colorado

Christiano Sosa, Executive Director of The Arc Colorado, smiles for a photograph wearing a blue polo. In fall of 2017, The Arc of Colorado welcomed Christiano Sosa as its new Executive Director. With a strong background in cause-driven work, Christiano has spent his first few months at the helm achieving big policy victories in employment, housing, DSP wages, and more.

 

Welcome to The Arc Family! Can you tell us a little bit about your background, and what drove you to become involved with the disability sector?

I have worked in social justice the entirety of my career, and I can’t imagine not being involved in social justice. I can’t think of a better organization that aligns with my values more than The Arc. The last 12 years I have worked in philanthropy providing resources to great non-profits that took on the work of addressing systems issues. While I loved my work in philanthropy, I came to understand that money alone cannot solve the problems unless system changes are effectively implemented. This came to be my calling.

What are some of the top priorities for your chapter right now, and how are you addressing them?

We certainly have our eye on reducing the waitlist so people get the right services at the right time. We will be looking at the settings rule and how that is implemented in Colorado. We will be working with our partners to ensure all of the rules and the promulgation of those rules are informed by the collective experience of the 14 chapters across the state. Inclusion and equity, in all of its forms, needs to be top of mind when we think about any systems or policy change. It will be a central focus of the Arc of Colorado moving forward.

Your chapter has worked heavily – and effectively – on a variety of legislative advocacy at both the state and national levels. Tell us about some of your biggest wins over the past few months.

We had tremendous wins in this Session. All five of our prioritized bills went on to the Governor. We had a priority in ensuring that people with intellectual or developmental disabilities have clear paths to employment, and through our work with our partners at the Department of Health Care Policy and Financing (HCPF), the Disabilities Council, the Arc of Larimer County and countless others, we ensured that people understand best practices under discovery and intake. People with I/DD in the state now have landlord tenant rights, which they were previously excluded from. We were able to increase Direct Service Providers’ wages 6.5 per cent. We whittled down the waiting list for the Comprehensive Waiver to close to three thousand. We were able to reauthorize the Child Mental Health Treatment Act and make that permanent.  Finally, we were able to move the Children’s Habilitation Residential Program Waiver (CHRP) over to HCPF from the Department of Human Services, and eliminate the previous waiver requirement that parents give up their custodial rights if their child has mental health needs and requires residential treatment. I am happy to share our journey with others at csosa@thearcofco.org.

What are some of the greatest challenges and opportunities you see on the horizon for The Arc of Colorado?

I am fortunate to come into an organization that is widely known and respected at the Capitol for our bipartisan work. This is difficult, complex work. It takes whole communities to rally together. The measurement of success for me will be when I see individuals with I/DD getting the right supports at the right time, throughout their lifetime and are part of society in ways they haven’t necessarily been in the past.

What advice do you have for other chapters working to ramp up their advocacy efforts?

It is incredibly important that we work on a bipartisan level. Fundamentally, I believe policy issues around individuals with intellectual or developmental disabilities are bipartisan. Our job is two-fold, one is about education and the other is to work with our elected officials so the voices of people with I/DD are heard. Beyond this, we must always be sure that inclusion and equity are the top values that we adhere to, if inclusion and equity come first, good policy can follow.

Tell us one fun fact about yourself.

I am a certified cake decorator in buttercreams, fondant, gum paste and a variety of other techniques. I find the work relaxing and there is the bonus of sampling the creations!

 

We want to hear about the amazing work your executives are doing in chapters across the country! If you’re interested in being spotlighted, please email Pam Katz at katz@thearc.org.