Marca Bristo

Marca Bristo, a Powerful Advocate for People with Disabilities, Dies at 66

The Arc mourns the loss of Marca Bristo, a remarkable champion in the fight for disability rights. Bristo died Sunday after a battle with cancer.

We are grateful for Bristo’s leadership in helping to pass the Americans with Disabilities Act, our nation’s major step forward in disability rights. Almost 30 years later, the historic progress made by the ADA remains critical in ongoing efforts to ensure that people with disabilities are included in society in ways that are accessible and fair. Bristo, who became paralyzed in an accident at the age of 23, also founded Access Living in Chicago and the National Council on Independent Living. The Arc has worked with Bristo and her organizations over the last several decades to advance our shared core values of independent living for people with disabilities, and their rights.

Sadly, we have lost a role model and leader in our community. Bristo’s vision and devotion to changing the perception of how this country sees disability continue to shape our society for the better. Her relentless advocacy at the local and national levels were instrumental in realizing many of the rights people with disabilities have today – and we celebrate her life and commitment. Bristo was 66. Please take the time to read these news pieces about her impactful life: The New York Times and Chicago Sun-Times.

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

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

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

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

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

To illustrate community living, check out our new video.

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

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

Nancy Murray from The Arc of Greater Pittsburgh Selected to Serve on National Family Caregiver Council

The Arc is honored that Nancy Murray, the President of The Arc of Greater Pittsburgh at ACHIEVA, has been selected by the Administration on Community Living to serve on the RAISE Family Caregiving Advisory Council. Nancy brings a deep personal and professional understanding of the caregiver crisis facing millions of families and people with intellectual and development disabilities (I/DD).

Nancy is the mother of two adult children with Down syndrome and has been a caregiver to both of her aging parents. Nancy has also been a powerful voice in the disability field for over 40 years in the areas of family support, advocacy, public policy, supports coordination, and health care. As a member of the Family Caregiving Advisory Council, Nancy will help develop recommendations to the Secretary of the U.S. Department of Health and Human Services (HHS) on effective models of family caregiving and support to caregivers, as well as ways to improve coordination across federal programs.

The Council was established by the RAISE Family Caregivers Act enacted last year to help address the growing national caregiver crisis for family members and persons with I/DD, seniors, veterans, and others. This crisis for caregivers is reflected in the findings of The Arc’s Family & Individual Needs for Disability Supports (FINDS) 2017 Survey which shows that nearly two thirds of caregivers surveyed are employed and 45% of respondents provide more than 80 hours of care per week. Not surprisingly, nearly half of FINDS caregivers report feeling “very or extremely stressed.” The findings also underscore the need for accessible respite programs: 92% of caregivers say they have difficulty finding respite care.

We are confident Nancy will help leaders in the federal government find solutions for families. The RAISE Family Caregiving Advisory Council will hold its first meetings on August 28 and August 29, 2019 in Washington, D.C. and will be live streamed.

For more on Nancy’s contributions to the I/DD community, please click here.

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.