A woman in a scooter and a dog play on a grassy field in front of houses.

The Arc Opposes HUD’s Proposed Change to Fair Housing Rule

The Arc has serious concerns about a new U.S. Department of Housing and Urban Development (HUD) proposed rule that could threaten important protections under the Fair Housing Act. The Act prohibits discrimination in the sale, rental, and financing of housing based on race, color, national origin, religion, sex, family status, and disability. The HUD proposal would make it significantly harder to prove discrimination in housing for policies that seem neutral, but in practice unfairly exclude certain groups of people or segregate particular communities. 

The Arc has fought long and hard for fair access to housing for people with intellectual and developmental disabilities (I/DD). We promote stronger enforcement of existing civil rights laws for people with disabilities, including the Fair Housing Act, and work to prevent discrimination based on disability, race, or any other protected status. We call on HUD to withdraw the “disparate impact” proposed rule, and we urge Congress to provide oversight of HUD to ensure it is delivering on the promise of fair and equitable housing.

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 600 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.

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 Department of Health and Human Services Proposes Rule to Weaken the Nondiscrimination Protections of the Affordable Care Act

The Arc continues to work to protect the significant achievements of the Patient Protection and Affordable Care Act (ACA), including the nondiscrimination provisions in Section 1557. We are disappointed to see the proposed rule from the Department of Health and Human Services (HHS), which radically narrows application of the nondiscrimination protections and limits the remedies for people who are impacted.

Sec. 1557 of the ACA prohibits discrimination on the basis of race, color, national origin, disability, age, and sex in healthcare. This section of the ACA is an important tool for achieving health care equity for people with disabilities and others. The proposed rule narrows important civil rights protections and undermines or eliminates key provisions covering individuals who have experienced discrimination in health care programs and settings.

The Arc promotes strong enforcement of existing civil rights laws in the face of attempted rollbacks, and opposes this proposal that puts people at greater risk of being denied necessary and appropriate health care. We will continue to pursue civil rights protections against discrimination based on disability, health status, ethnicity, race, sex, pregnancy, gender identity and expression, sexual orientation, religion, familial status, age, language, national origin, and genetic information in the administration of and access to health care.

What can The Arc and disability rights advocates do? This rule is not yet final, and today is the beginning of a 60-day public comment period. The Arc will participate in the comment process and will share resources to help others engage. To stay informed, sign up for our Disability Advocacy Network email list.

The Arc Condemns Deteriorating Treatment of Unaccompanied Minors in US Custody

Recent reports indicate that the federal government will restrict or cancel educational, recreational and legal services for thousands of children held in government migrant shelters.

These practices are cruel and misguided. Research shows that trauma in childhood can have serious and lifelong consequences.  There is no evidence indicating that any time in detention is safe for children. As the American Academy of Pediatrics has stated, recreational and social enrichment activities, such as opportunities for physical activity and creative expression, may alleviate stress and build resilience and should be part of any program for detained children. Adequate recreational and educational activities for children being held in these shelters is both the necessary and compassionate course of action.  These services and activities are central to childhood development and wellbeing and their absence, particularly for an extended period, may cause long-term losses.

Reports also indicate that these children will no longer have access to legal services.  The Arc believes that children and families should have access to legal counsel throughout the immigration pathway, and unaccompanied minors should have free legal counsel with them for all appearances before an immigration judge. Adequate legal services must be restored immediately.

We call on the federal government to ensure that these children are treated with dignity and respect, with access to educational, recreational and legal services, and not subjected to conditions that may cause harm. At minimum, children deserve protection from additional traumatization in the United States. We remain deeply concerned about the impact this will have on children with and without disabilities.

The Arc Responds to Reports on the Widespread Use of Solitary Confinement for Immigrant Detainees, Including People with Disabilities

Washington, DC – This week, reports have surfaced documenting that thousands of immigrants have been trapped in solitary confinement in immigration detention centers, often based solely on their disability status or their gender identity.

“These atrocious reports of cruel confinement in isolation, without necessary services, in circumstances that are traumatizing and dangerous to the people involved, are unacceptable.

“Non-citizens with any type of disability should have a fair opportunity to enter and reside legally in the United States and to become citizens, without unnecessary or discriminatory restrictions based on their disability, gender identity or expression, or sexual orientation.  We must also ensure that individuals with disabilities who are facing deportation or other legal action are provided with appropriate representation, due process protections, and reasonable accommodations and that they are not unnecessarily segregated in immigration facilities.

“We have already seen proposals like the public charge rule that would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country. We continue to condemn these policies and practices and call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America.   We will continue to promote and protect equal rights of children and adults with disabilities in all parts of the world, and call on our government to ensure that, at minimum, people should not be subject to harm while they are held under the care and authority of this country,” said Peter Berns, CEO, 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 600 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.

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’s Concerns About Changes at the Administration for Community Living

The Arc was concerned to read the Notice Statement on the reorganization of the Administration for Community Living (ACL) published in the federal register. As the “the principal agency in the department designated to lead aging and disability programs,” ACL must have sufficient resources, support and clarity in its goals to be successful in this role. ACL has been a leader and key partner on a range of essential issues, including protecting the rights of people with disabilities and older adults, preventing abuse and neglect, supporting needed systems change activities, promoting promising practices in home and community-based services, implementing person-centered planning, and providing a range of technical assistance to states and other stakeholders, among many others. ACL must continue to support programs and policies that advance community living for older adults and people with disabilities of all ages and facilitate full participation in their communities. Achieving this goal requires a robust and well-informed staff, including, for example, leadership with substantial knowledge of independent living services directing the Independent Living program, as required in the Workforce Innovation and Opportunity Act. The current proposal divides programs that have traditionally worked collaboratively, such as the programs authorized under the Developmental Disabilities Assistance and Bill of Rights Act. We strongly encourage the U.S. Department of Health and Human Services to prioritize ACL’s work toward its stated mission, to maximize the independence, well-being, and health of older adults, people with disabilities and their families and caregivers. ACL must avoid unnecessary disruption and ensure that any changes will not undermine the agency’s effectiveness. We call on ACL leadership to work with stakeholders to safeguard necessary supports and services for older adults and people with disabilities and advance community living.

#Handsoff: Why I Advocate to Stop the Shock

By Nicole Jorwic

Nicole and Chris Jorwic

People with disabilities are being tortured by shock devices at the Judge Rotenberg Center. These devices are worn by residents of JRC, an institution in Massachusetts for children and adults with disabilities. Staff members use remote controls to administer a shock to residents for perceived misbehavior.

This is despite the fact that there is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. It continues to be shown that there is NO THERAPEUTIC benefit to these devices. The actions of the JRC remain a civil rights issue. With every day that passes without this rule being finalized by the FDA, the rights of people with disabilities and mental health issues will continue to be violated as they endure abuse and torture. We shouldn’t rest until this barbaric practice is halted and use of these devices are banned at the JRC and nationwide.

This issue is something that matters to me personally. My brother Chris is 29 and has autism. And it is my brother’s voice that I have heard during every tense Capitol Hill meeting, meeting with the FDA and submitting comments on why these tortious devices must be banned. This is a little ironic since my brother doesn’t use his voice to speak.

Chris types to communicate — and one thing that he always highlights when he is out training others on how to interact with people with disabilities, is that every behavior is a form of communication. Chris communicates with his behaviors too, and it terrifies me to know that if he were a resident at the JRC, he could very likely be shocked for trying to express himself or communicate his needs.

The FDA must act. All people with disabilities deserve the right to live free from the fear of torture. Continuing in their posture of inaction is to devalue the lives of people with disabilities. We will not stop fighting until we are able to STOP THE SHOCK. Learn more about how you can help.

 

#HandsOff our Kids: Advocating Against Restraint and Seclusion

#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: Erik Smith

I went to Washington last month to support my wife in sharing our family’s story about restraint and seclusion. A few weeks before, the new executive of The Arc Rhode Island Family Advocacy Network put out a call to find families who would be willing to provide testimony at a Congressional hearing on this topic. Needless to say, my wife Renee and I jumped at the opportunity. We had mixed feelings about making our family’s experience so public, but felt strongly that we needed to advocate for all families to help them avoid the painful and unnecessary practices of restraint and seclusion that our son Dillon, who has autism, had experienced repeatedly in kindergarten and the first grade.

Renee Smith sits in front of Congress testifying, as an audience sits behind her.

Renee started her testimony by describing what our daily lives used to be like. She recounted the regular instances of restraint and seclusion that Dillon experienced, the multiple calls to 911 made by the school, Dillon’s increasing dislike of school, his missed educational opportunities, and the overwhelming stress on our family. I felt proud of Renee as I watched her recount, sometimes through tears, how much harm this had caused our then 6-year-old son and our family as a whole, including our marriage and our jobs. Fortunately, Renee was able to end her testimony on a very positive note. After we moved Dillon to a different public school in the same district that uses positive behavior intervention and support, Dillon is thriving.

In preparing for the hearing, we had the chance to learn more about the history of federal legislation to limit restraint and seclusion. We learned about a law (the Children’s Health Act of 2000) that includes serious limits on these practices. The only problem is that it doesn’t include school settings.

As I listened to Renee, I was struck by the contrast between my professional and personal life regarding the limitations on restraint and seclusion. I am a nurse and I work in a long-term care facility. The Centers for Medicare & Medicaid Services (CMS) strongly regulate the use of restraints in LTC facilities, with these regulations to be enforced through state Health agency survey and certification. I have always been well aware of what I can and cannot do when our patients exhibit challenging behaviors. I have received training by my employer on patient’s rights, on what we are legally barred from doing, and on effective alternatives to restraint and seclusion. I see firsthand how this benefits our patients and staff alike. But as a parent, I see how the lack of such protections have hurt my son.

This point was made in 2009 by the former chairman of the House Education and Labor Committee, Rep. George Miller, the last time there had been a hearing on restraint and seclusion:

Federal law restricts the use of seclusion-restraints to emergency circumstances for children in hospitals and community-based residential treatment facilities and other facilities supported by federal dollars.  Yet these rules do not apply to public or private school. This means an untrained medical professional is forbidden from inappropriately restraining a patient and, if they do, there are laws specifically targeted to address such behavior. But untrained classroom staff are abusing student in schools without any accountability because of a lack of federal oversight. Our children are bearing physical and emotional burden of a system designed to fail them”

It is now almost a full decade later. Far too many children like my son continue to be restrained and secluded in school. It is past time to correct this problem.

 

Trump Administration 2020 Budget Request: Old Ideas and Big Cuts

Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.

Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

The Arc Responds to Three Month Extension of Money Follows the Person Passing Congress

Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.

“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.

“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities.  We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.

The Arc Responds to Department of Education Announcement on Restraint and Seclusion

Today, in response to the U.S. Department of Education’s announcement of an initiative to address the inappropriate use of restraint and seclusion on students with disabilities, Julie Ward, The Arc’s Senior Executive Officer for Public Policy, issued the following statement:

“The Arc appreciates the Department’s new effort to protect students with disabilities from the harmful practices of restraint and seclusion.  We believe this is a step in the right direction to move away from outdated and ineffective practices that are all too frequently used on students with intellectual and developmental disabilities (I/DD). We are hopeful that shining a light on what is happening in our schools, reinforcing the requirements of federal laws, and providing assistance to public schools will benefit all students, including those with I/DD.  However, more needs to be done by Congress to strengthen the federal protections and end these harmful practices. The Arc looks forward to working with the Administration and Congress to move aggressively in that direction.”