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.

The Arc Responds to Senate Passage of the Farm Bill

Washington, DC – Today, the United States Senate passed its version of the “Farm Bill” (Manager’s Amendment to the House version of the 2018 Agriculture and Nutrition Act), a bill to reauthorize farm programs and policy as well as the Supplemental Nutrition Assistance Program (SNAP).

“We applaud the United States Senate for its bipartisan work on a new version of the Farm Bill, rejecting the cruel cuts to SNAP proposed in the House of Representatives.  As both Chambers of Congress negotiate a final version of this bill, we hope they keep in mind the more than 11 million people with disabilities across the United States who rely on SNAP to help them eat. This is an opportunity for Members of Congress to preserve access to basic food assistance for their constituents with disabilities who are struggling to put food on the table.

“Our hope is an end result that protects and preserves SNAP, rejecting cuts to this invaluable program,” said Peter Berns, CEO of The Arc.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. 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 and without regard to diagnosis.

Labor Department Finalizes Rule Expanding Non-ACA Compliant Association Health Plans

Critical Consumer Protections Missing, Potentially Impacting Affordability of Other Plans

On June 19th, the Employee Benefits Security Administration of the U.S. Department of Labor (DOL) announced a final rule on Association Health Plans (AHPs), finalizing the DOL’s proposed rule released on January 5, 2018. AHPs allow groups of small business to band together and purchase health care plans for their employees. The rule exempts these association plans from some of the requirements of the ACA. It allows plans to be sold that do not provide a minimal level of health care services so they may be cheaper and attract healthier people. This in turn could make the ACA compliant plans more expensive if they have more people who require health care services in their risk pools.  This rule will undermine the Affordable Care Act (ACA) and the critical consumer protections the ACA provided to people with disabilities and chronic health conditions.

Before the ACA became law, it was extremely difficult for people with pre-existing conditions to purchase affordable and comprehensive health insurance in the individual and small group market.  Finalizing this rule and other actions by the Administration signal a return to unaffordable and skimpy health insurance and a corresponding increase in the cost of ACA compliant health plans. The following are specific concerns with the AHP final rule:

  • Incomplete Coverage of Essential Health Benefits (EHBs) – These plans would not be subject to the ACA’s requirement to cover all ten categories of EHBs. They could exclude coverage for mental health, substance abuse services, and rehabilitative and habilitative services and devices and other essential health benefits. People with disabilities and chronic health conditions rely on these basic health care services to maintain their health and function.
  • Purchasing Confusion – Unlike other plans, AHPs are not required to adhere to the ACA’s consumer protections. This causes confusion among Americans about which types of plans will cover the services they need. Consumers could unknowingly purchase plans that could leave them underinsured if they become ill or need medical care.
  • Higher Premiums Based on Age and Gender – AHPs cannot charge higher premiums based on health status, but they do allow AHPs to base premiums on age and gender. This means women and older workers could end up saddled with higher out-of-pocket costs.
  • Undermined Risk Pool – AHPs are likely to attract younger, healthier workers away from the individual and small group marketplaces. This skewing of the risk pool will force these marketplace plans to raise premiums on comprehensive plans, increasing costs for people with disabilities and older Americans. It will leave AHP enrollees with bare bones benefit packages that are more likely to fail to meet their needs when needed most.
  • History and Risk of Fraud – AHPs have a history of fraudulent operation in which unauthorized health insurance companies fail to comply with regulation, collect premiums for nonexistent insurance, fail to pay claims, and leave patients with hefty medical bills. AHPs expanded under the final rule could cause a new wave of fraud, leaving people with disabilities vulnerable to ending up uninsured.

The Arc will continue to analyze the impact of health care rulemaking on people with disabilities and chronic health conditions and respond to changes that negatively impact people with disabilities.

#HandsOff Medicaid for this Rockstar Musician

#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.

By: Rachna Heizer, Member of The Arc of Northern Virginia

I am the mother of Jake, a 16 year old rockstar musician with autism. The first thing you might notice about Jake is he doesn’t maintain conversations, but he can rock your world onstage. He loves to play his guitar and sing. He performed 44 times last year, and even auditioned on Broadway. When Jake was seven years old, he first picked up a guitar and three days later was playing full songs – we knew he had an amazing ability.

Jake and Rachna

Medicaid is an important part of the fabric of our family. Through Medicaid, Jake has an attendant who comes after school to provide care to him so I can continue my job. Jake and his attendant work together on independent living skills. They practice how to have conversations in the community, how to go places, how to be independent, so the hope would be that someday, when he’s out of our home, he can live independently in the community, access grocery stores, run his errands, and live his life like anyone else.

 

Jake performing on stage

Without Medicaid, I would have to quit my job and it would significantly impact our financial ability to maintain our home. It is a significant support that allows us to help foster Jake’s ability in his music, and provide him a path to the productive world when he is older.

It’s important to say #HandsOffMedicaid because without the supports provided by Medicaid, both my son and I — and many people with disabilities and their families — lose the support and services they need that allows us to stay in our society, gainfully employed and living with dignity amongst everyone — and in Jake’s case, to keep rockin’!

 

The Arc Responds to Supreme Court Decision to Decline Review of Brendan Dassey Case

Washington, DC – Washington, D.C. – Today, The U.S. Supreme Court declined to grant review of Dassey v. Dittman. Brendan Dassey, a young man with social, learning, and developmental disabilities, was a central figure in Netflix’s smash docuseries, Making a Murderer He was sentenced to life in prison at the age of 16 after conviction for first-degree homicide, rape, and mutilation of a corpse based solely on his confession – no physical evidence linked him to the crime.

Dassey appealed the conviction on the grounds that his confession was involuntary. The Wisconsin Court of Appeals rejected this argument and affirmed Dassey’s conviction. A federal district court and a divided panel of the Seventh Circuit Court of Appeals held that this rejection warranted habeas relief, but by a 4-3 vote, the en banc Seventh Circuit disagreed. Dassey’s attorneys then made an appeal to the U.S. Supreme Court. Now that the U.S. Supreme Court has declined to review the case, Dassey may spend the rest of his life in prison.

The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD) and their families, released this statement following the news that the nation’s highest court will not review Dassey’s case:

“This is a sad day for Brendan Dassey and his family, as well as our criminal justice system. The U.S. Supreme Court’s decision to not review this case means that Brendan will likely serve life in prison based solely on a dubiously obtained confession.

“The U.S. Supreme Court has not addressed the issue of false confessions by juveniles in almost four decades. There has been significant growth of knowledge and understanding of how adolescents can be more susceptible to authority figures, coercion, and misleading tactics in the last four decades.  This is particularly true for individuals with intellectual and developmental disabilities.

“Brendan Dassey has already been incarcerated for over a decade, solely on the basis of an unreliable confession. Now the reality of life in prison for a crime there is no physical evidence he committed is sinking in. Sadly, our prisons and jails hold many Brendan Dasseys, too often forgotten, some not even recognized as being robbed of justice. We have a responsibility to ensure everyone in our country accesses justice the same way, which is why we must acknowledge the gaps in justice many are facing. The Arc will continue fighting for the rights of people with intellectual and developmental disabilities, and in the aftermath of this case we will only increase our efforts to ensure that justice is appropriately served,” said Peter Berns, CEO of The Arc.

While people with intellectual and developmental disabilities comprise 2% to 3% of the general population, they represent 4% to 10% of the prison population. Those accused of crimes they did not commit often face the greatest injustices of all, some losing their lives when coerced into giving false confessions. Long before Brendan Dassey’s case hit mainstream media, Robert Perske, respected author, advocate, and long-time supporter of The Arc, compiled a list of people with intellectual disability who gave false confessions to begin documenting these otherwise hidden-away cases.

Earlier this month, The Arc’s Criminal Justice Advisory Panel was launched. The panel is the latest addition to the organization’s National Center on Criminal Justice and Disability’s® (NCCJD®) ongoing advocacy to protect the rights of people with I/DD involved in the criminal justice system. During this event, The Arc presented, Steven Drizin, Clinical Professor of Law at Northwestern University Pritzker School of Law’s Center on Wrongful Convictions of Youth, with The Perske Award for championing the rights of people with I/DD in the criminal justice system. Drizin was presented the award for a lifetime of work on justice reform for youth and people with disabilities and his representation of Brendan Dassey

Established in 2013, NCCJD is the only 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/inmate issues. The center provides training and technical assistance, resources for professionals, people with disabilities, and their supporters, as well as educates the public about the intersection of criminal justice reform and the advancement of disability rights. Pathways to Justice,® NCCJD’s signature training tool, is a comprehensive, community-based training program facilitated through chapters of The Arc that helps criminal justice professionals understand their legal obligations toward the disability community, and includes the topic of false confessions. 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.

About The Arc

The Arc advocates for and serves people wit­­h 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 Arc’s Criminal Justice Advisory Panel

The Advisory Panel is the latest addition to NCCJD’s ongoing advocacy to protect the rights of people with I/DD involved in the criminal justice system. It brings together legal professionals who share The Arc’s mission to protect and promote the civil rights of people with I/DD and will help expand NCCJD’s crucial advocacy.

The Arc Responds to Executive Order on Family Separations

Washington, DC – The Arc released the following statement in response to President Trump’s signing of an Executive Order on family separations.

The Executive Order directs the Department of Homeland Security to detain families together during the pendency of criminal proceedings for illegal entry or other immigration proceedings relating to any of the family members.  It also instructed the Attorney General to file a request with the U.S. District Court for the Central Court of California to modify the Settlement Agreement in Flores v. Sessions to permit indefinite detention of children with their families, a practice that currently is not allowed.

“President Trump signed this Executive Order in response to massive outcries from across the globe about the heart-wrenching separation of children from their families at the US-Mexico Border.  This Executive Order provides some relief for children, infants, and toddlers at the border as their parents and they undergo various proceedings regarding asylum, immigration, and deportation. However, it also creates new problems requiring the incarceration of children with their parents and families for an undetermined period of time while their cases are being decided.

“We are still in the midst of a civil and human rights crisis. Children who have already been separated from their parents should be reunited as soon as possible. This is an urgent situation for all children involved and in many cases irrevocable damage has already been done. For children with intellectual and developmental disabilities, who rely on their loved ones for care, security, and support, particularly for their unique needs, it is of paramount importance they are reunited with their families.

“Incarceration for parents and families still carries risks of life-long trauma to the children in custody. Effective alternatives to detention – such as the Family Case Management Program – should be used so that families can provide a semblance of normalcy to children while their cases are being handled in the courts and agencies. We implore Congress and the Administration to find an alternative to the incarceration of innocent children. This nightmare for families is far from over and we remain deeply concerned about the impact this will have on children with and without disabilities,” said Peter Berns, CEO of The Arc.

The Family Case Management Program is a possible alternative to incarceration for families. Unfortunately, The Family Case Management Program, a less restrictive program to assist families seeking asylum with very young children and others – was ended by the Administration in June 2017.

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. 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 and without regard to diagnosis.

The Arc Responds to House Budget Committee Passage of FY 2019 
“Budget for a Brighter American Future”

Washington, DC, June 22, 2018 – This week, the House Budget Committee passed House Budget Committee Chairman Steve Womack’s 2019 Budget Resolution. 

Chairman Womack’s 2019 Budget Resolution would target health care programs including Medicaid, Medicare, and the Affordable Care Act (ACA), and substitute in a plan for the ACA that would cause 23 million Americans to lose health insurance by 2026, according to the Congressional Budget Office.  It also imposes severe reductions on non-defense discretionary spending, which funds programs like education, training, and employment that make community living possible for people with intellectual and developmental disabilities (I/DD).

 “The Arc strongly opposes the FY 2019 Budget for a Brighter American Future.  Like last year’s House Budget, this budget would have people with intellectual and developmental disabilities bear the brunt of the nation’s deficit reduction efforts. The cuts would slash trillions over a decade from essential programs serving people with disabilities. This budget not only widens economic inequality, it fails to address critical issues such as the growing need for long term supports and services resulting from our aging population. 

“We can read between the lines and see that the real purpose of this budget is to lay the foundation to cut Medicaid and other programs by the end of the year.  The Arc’s network of advocates united to block these cuts last year and we are ready to do so again if this budget resolution advances to the House floor and is introduced in the Senate,” said Peter Berns, CEO of The Arc. 

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

The Arc Responds to House Passage of the Farm Bill

Washington, DC – Yesterday, the House of Representatives passed the 2018 Agriculture and Nutrition Act, also known as the “Farm Bill,” to reauthorize farm programs and policy as well as the Supplemental Nutrition Assistance Program (SNAP).

“We are extremely disappointed that the Farm Bill passed in its current form. If enacted as is, this version of the bill would cut off basic food assistance for children, adults, and seniors who are struggling to put food on the table. It is disturbing most Members of the House buy in to the notion 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 are serious about employment, Congress needs to make major new investments in job training and supports and services for jobseekers with disabilities and their families.

“The Farm Bill has a long history of bipartisan collaboration and support. The Arc calls on Members of the Senate to work together on a bipartisan approach to Farm Bill reauthorization that protects and preserves SNAP, rejecting the proposed cuts in the House version of the bill,” said Peter Berns, CEO of The Arc.

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

The Arc Responds to Escalating Situation at US-Mexico Border “Families belong together and the act of tearing them apart is inhumane and cruel”

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border and news of children with intellectual and developmental disabilities being amongst those taken from their parents.

“With each passing minute, we reach a new low as the civil rights and values upon which our nation was founded continue to be betrayed. News of a young girl with Down syndrome being torn from her family is heart wrenching, yet what is garnering headlines is the callous response from those who support the actions of the Trump Administration. As we have said before – family separations are extremely traumatizing and damaging to children. Children with disabilities rely on their loved ones for care, security, and support, particularly for their unique needs. Unfamiliar border agents and other authorities who collect little information about the needs of a child with disabilities risk exacerbating disabling conditions and causing serious harm, in addition to the severe trauma of separation.

“Families belong together and the act of tearing them apart is inhumane and cruel. The Administration’s barbaric choices will undoubtedly traumatize children with and without disabilities. As this situation escalates, we call upon Congress to take action to ensure that these administrative practices are permanently prohibited. The Arc remains aligned with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc.

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. 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 and without regard to diagnosis.

The Arc Condemns Family Separations at U.S.-Mexico Border; Calls on Congress to Act

Washington, DC – The Arc released the following statement in response to the forced immigrant family separations that are occurring at the U.S.-Mexico border.

“The Arc stands with the immigrant community and the many organizations and individuals that have come out in opposition to this abhorrent practice,” said Peter Berns, CEO of The Arc. “The notion of uniformed, federal border protection agents forcibly separating parents from their children is outrageous. Family separations are extremely traumatizing and damaging to children, and none are more affected than children with disabilities, who rely on their loved ones for care, security, and support.”

The practice of forcibly separating children from their parents can cause irreparable harm in a child’s development, resulting in disability. As noted by the American Academy of Pediatrics regarding these forced family separations, “In fact, highly stressful experiences, like family separation, can cause irreparable harm, disrupting a child’s brain architecture and affecting his or her short- and long-term health. This type of prolonged exposure to serious stress – known as toxic stress – can carry lifelong consequences for children.”

The Arc’s Berns further noted: “The Arc condemns the cruel and inhumane immigration practices which the Trump Administration has stated are being carried out in accordance with existing immigration policies and laws. However, this explanation rings hollow. Nothing in the law requires the children to be ripped away from their families. This is, quite simply, a choice that has been made by the Administration which is both punitive and contrary to basic human decency.

“How many children have already had the protection, security, and love of their parents stripped away, and how many more face the same fate? As a nation founded by immigrants, we and our elected representatives at the state and federal levels should be outraged by this practice. We call upon President Trump to immediately halt these cruel practices, and we call upon Congress to take action to ensure that such Administrative practices are permanently prohibited.”