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The Arc Disgusted by Allegations of Human Subject Experiments, Abuse, and Inadequate Care in Iowa State Institutions for People With Disabilities

/in , , , /by The Arc

Washington, D.C. – The Arc is disgusted by monstrous allegations against two institutions for people with intellectual disabilities operated by the state of Iowa. The U.S. Department of Justice is reportedly investigating whether the state violated the civil rights of residents at the Glenwood Resource Center by subjecting them to sexual arousal studies and other “harmful and uncontrolled human subject experiments.” According to reports, the Justice Department is also looking into allegations of inadequate care, needless restraint, and physical injury at Glenwood, in addition to possible violations of the integration mandate of the Americans with Disabilities Act at Glenwood and the Woodward Resource Center.

“We are sickened and outraged. The allegations include degrading and dehumanizing practices, medical invasions in violation of the bodily integrity and dignity of people with disabilities, and reportedly, an increase in deaths.

“This type of alleged treatment is reminiscent of a dark history of coerced medical experimentation and abuse – it’s repugnant and unacceptable. The disability community refuses to go back to those days,” said Peter Berns, CEO, The Arc. “We will be watching this investigation closely. Regardless of the outcome, The Arc and our allies continue our adamant calls to shut down every institution in the nation as soon possible.”

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), 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 IDD 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.

 

brittany-simuangco

The Arc Applauds Federal Action to Support Parents With Disabilities

/in , , , /by The Arc

Washington, D.C. – The Arc applauds the U.S. Department of Health and Human Services for taking action to protect the rights of parents with intellectual and developmental disabilities (IDD) under federal civil rights law. Parents with IDD must not be subject to discrimination or be denied the opportunity to raise their children in their home based solely on a measure like IQ score.

After completing a compliance review, the Office for Civil Rights (OCR) at Health and Human Services announced an agreement with the Oregon Department of Human Services Child Welfare Program (ODHS) requiring ODHS to ensure they meet their obligations under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, and update its policies and procedures to prevent future discrimination against parents with disabilities in Oregon’s child welfare system. The agreement stems from a case in which ODHS removed two infant children from their mother and father and denied the parents appropriate supports to allow them to reunite with their children, largely because of the parents’ intellectual disabilities and IQ scores. We are encouraged that ODHS has agreed to this important work, including necessary policy changes and training opportunities.

“The Arc is a strong proponent of the rights of parents with intellectual and developmental disabilities to raise children. Research shows that the presence of IDD does not itself preclude effective parenting. Parents with IDD should have access to support as needed to perform parental roles just as they are supported in other valued social roles and activities. We are glad to see federal regulators reject stereotypical and discriminatory beliefs about the abilities of parents with IDD to care for their children, particularly when considering the history of discrimination, including involuntary sterilization,” said Peter Berns, CEO, The Arc. “The Arc calls on state governments, as well as family support and early intervention programs to make sure that intensive and ongoing supports for parents with IDD are available, so that parents like Amy Fabbrini and Eric Ziegler in Oregon can raise their children whenever possible.”

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Open Enrollment and Disability: What You Need to Know

/in , , /by Pam Katz

Disability Open Enrollment Week of Action kicks off Sunday, November 17, 2019 — but you can enroll until December 15!

The Arc believes that everyone, including people with intellectual and developmental disabilities, should have timely access to high quality, comprehensive, accessible, affordable, appropriate health care that meets their individual needs, maximizes health, well-being and function, and increases independence and community participation.

If you are uninsured or looking for more affordable health insurance, visit healthcare.gov or your state’s Marketplace or health insurance exchange. During the open enrollment period from November 1, 2019 – December 15, 2019, you can review private health insurance options and purchase coverage. People with low and moderate incomes may be able to get financial help to pay for premiums and other cost-sharing may be available for individuals and families, depending on the plan.

If you have a disability or health condition, here are key questions to ask:

  • Is there a broad range of health care providers included in the plan’s network?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent as other “physical” health needs?

How to get help:

Purchasing health insurance can be complicated. If you or your family member needs assistance, healthcare.gov can help. Each state has health insurance “Navigators” to assist with enrollment. Individual health plan information should be available on the website.

If you already have health insurance through the Marketplace, open enrollment is a good time to see if your coverage still meets your needs. It is also important to update income and household information to make sure you are receiving available assistance and to help avoid penalties, if your income has increased.

You can also sign up for insurance outside of open enrollment, if you lose your job, marry, divorce, or have a baby.

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The Importance of Paid Leave: A Sibling Perspective

/in , , , /by Pam Katz

By Nayma Guerrero, Member of The Arc’s National Sibling Council

My family is everything.

Nayma and her family

My younger brother is 23 years old. He loves computer science, animation, and art and design. He also enjoys working out at the gym. Things are sometimes challenging for my brother, who has autism, intellectual disability, attention deficit disorder, and depression. Then there’s my sister. Like many 14 year olds, she loves the mall. She also plays soccer and basketball, and likes playing with her dolls. I admire my sister for sticking to it at school, despite having learning disabilities.

Like a lot of families, the day starts at my parents’ house in controlled chaos. My mother takes on what seems like the biggest challenge of the morning shared by moms everywhere: getting my brother and sister out of bed! A true supermom, my mother helps both of them get their school clothes together and makes sure they eat breakfast every day. She truly believes breakfast is the most important meal of the day. After they eat, my mother drives my brother and sister to school before taking care of the grocery shopping and errands.

Both of my parents are very hard workers and make sure my siblings’ needs are met every day. My father works fulltime, so my mom is usually the one who is taking care of my brother and sister.  My brother requires a lot of care, attention, and daily reminders to make sure he’s dressed, gets to school on time, and takes his medication.

A few years ago, my mother ended up in the emergency room. It turned out to be life threatening. My mother needed emergency surgery. We were shocked and worried as any family would be. After her surgery, we were told my mother would need to be on bed rest for about two weeks minimum with little movement. She would need a lot of assistance to get around the house, use the restroom, and shower. We were concerned for my mother but also for my siblings.  My mother is the person my brother depended on the most. And my sister was only 10 at the time.  

My father and I realized it was up to us to help my mother, my brother, and sister. For my father, taking time off meant he didn’t get paid and it was already hard for my family to make ends meet – still is.  I was also working hard, but not getting full time pay or health benefits of any sort. I was working just under 40 hours a week and therefore, part time. Calling off also meant no pay for me. It was really hard for my father and myself to work out a schedule where we could both help my brother with his needs and care for my little sister and my mother. It was also hard because my brother has a difficult time trusting other people, so he needed us. Sometimes, there is just no substitute for family.

Now imagine what it was like for us to shift to relying on one income – we had to save every penny for rent and bills, that’s it. I didn’t know how I was going to make my car payments. We were barely getting by.

Paid leave from our jobs would have helped my family at a time when we needed it most. If I would have had access to paid leave, I would have been able to help my family without losing my pay. My father wouldn’t have had to call out of work with no pay and risk losing his job. I also wouldn’t have had to go some days without pay. I was also scared that my job was going to fire me because I had to call out. With paid leave, we would have been able to provide my brother and sister with better care, while my mom recovered from surgery.

There are many families like mine. When the unexpected happens, family members need to be able to be there for each other – and still keep their jobs.  The U.S. needs a paid leave system so that families like yours and mine can care for loved ones when they need our help.

a family with two young girls poses in front of trees and smiles

The Arc Calls for Action on Paid Leave

/in , , /by Pam Katz

In honor of National Family Caregivers Month in November, The Arc is raising awareness of the issue of paid family and medical leave and its importance from the perspective of sibling caregivers of people with intellectual and developmental disabilities (IDD).

The Arc is sharing a new and compelling family story to illustrate the urgent need for a national and comprehensive paid leave system that includes siblings.

One in five Americans has a disability. The caregiver crisis is hitting these families in a uniquely difficult way, while paid family leave proposals have stalled in Congress far too long. Without paid leave, families face a cruel choice: the health and well-being of a loved one with a disability – or working to make ends meet.

The Arc’s Family & Individual Needs for Disability Supports (FINDS) survey shows the need for family and medical leave policy reform and reveals that 80 percent of people with IDD live with a caregiver who is a family member.

“We call on Congress to pass inclusive paid family and medical leave legislation that recognizes the important role of all family caregivers. People with intellectual and developmental disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment, making the impact of unpaid time off particularly devastating,” said Peter Berns, CEO, The Arc. “Siblings are increasingly taking on the role of primary caregiver, as parents and grandparents age and become unable to care for children and grandchildren who have disabilities and important care needs.”

Please find Michael’s story and other paid leave stories here.

Four siblings smile and link arms together, smiling at each other

Congressional Testimony: The Direct Care Crisis

/in , , /by The Arc

The Arc’s Senior Director of Public Policy, Nicole Jorwic, testified during a Congressional briefing on “The Hidden Crisis of Care in the U.S. – Addressing the Homecare Workforce Shortage” Friday, November 1. Jorwic explained the impact of the direct care crisis and how it hurts direct support professionals and people with intellectual and developmental disabilities and their families, including her own.

The Direct Care Crisis: In Congress, On the Road, and at Home

By Nicole Jorwic, Senior Director, Public Policy

In my role at The Arc, I am lucky to spend a fair amount of my time on the road speaking and meeting with our chapters, families and individuals with disabilities. Nearly everywhere I go, the number one issue that I hear about most is the workforce crisis when it comes to serving individuals with disabilities.

People with intellectual and developmental disabilities (IDD) often need some extra support to be a part of their community. The help can include supports in personal care, communication, household tasks, building relationships, and navigating the community. The work that direct support professionals, or DSPs, do is invaluable to the disability community and the service system that relies on their abilities to keep people out of more costly, restrictive, and often segregated institutional settings.

The word “crisis” doesn’t really do it justice – having a skilled, properly trained and fairly paid workforce is the linchpin for success for so many people with disabilities to live the independent life that they choose.

To illustrate the crisis, consider these statistics for direct support professionals:

  • $11.76 average hourly wage
  • 46% average state-wide turnover rate
  • 38% of DSPs left their position in fewer than 6 months (Hewitt et al., 2018)

How, in 2019, after decades of progress in disability rights, are we in this mess?

The lack of investment from the top creates the crisis.

There has been a lack of federal investment for decades and states have not picked up the slack. The rates service providers receive to ultimately pay DSPs do not take into account the wages of competing occupations, the need for benefits, and the actual costs of services. What has resulted are rates and therefore wages that have been flat for decades, without even cost of living increases.

I also know what this looks like from a personal perspective.

My brother Chris is 30 and has autism. He lives in the suburbs of Chicago with my Mom and Dad who both work full time jobs. Chris has a series of three to four DSPs who come throughout the week to get Chris out into the community. He spends time volunteering with the elderly, works out to stay healthy, and is working on finding community employment.

It sounds great, right? And it can be, but it all hangs on a thread. In my home state of Illinois where the average DSP wage is even lower at under $10 per hour, a very thin thread.

And I was at one of those events for a chapter over the summer, hearing about the workforce crisis when I got a text from my mom that Chris’ “main DSP”, meaning the one who was with him the most, had quit, not because she didn’t love Chris, or the work, but simply because she could make more doing something that didn’t have the same responsibilities.

That happened more than two months ago, and a new DSP still has not been hired, so now my Mom can’t work as much, or other family members help us cover. But not everyone can make those changes.

It also has a very real impact on the progress that my brother can make in his own life. I asked him to share his thoughts and he typed “I want more support, I am very frustrated and I feel that my progress is being hurt. I need more regular scheduled DSPs and they deserve to earn more because of the work they do and so they stay.  I have no patience anymore.” This breaks my heart as a sister and as a professional. The stress I hear in my mom’s voice every time I ask for an update is what I hear from every individual with disability, family member and provider group that I talk to.

An increase in federal funding to support DSP wage increases is the most direct way to make a significant impact on the workforce crisis. The Arc also supports the development and implementation of a national credentialing system for DSPs to professionalize the industry and programs that directs qualified people into the industry via pipeline programs.

These are all policy angles that we will continue to work on because we know the real-life impacts of the continuation and worsening of this crisis.

We must do better for Chris, families like mine across the country, the DSPs who want to work in this profession, their families, and society as a whole.*

*Story is shared with Chris’ permission

Black and white photograph of justice scales sitting on a desk in a courtroom

The Arc Applauds Federal Injunctions Against Public Charge Rule

/in , , , /by Kristin Wright

Washington, D.C. – The Arc applauds a slew of decisions from Federal Courts in New York, Washington State, and California that grant preliminary injunctions against the U.S. Department of Homeland Security’s (DHS) implementation of its discriminatory public charge rule. The injunctions block the rule that would have a dire impact on people with intellectual and developmental disabilities, that had been scheduled to take effect on Tuesday, October 15. Two of the three decisions explicitly acknowledge the strength of the disability discrimination claims under Section 504 of the Rehabilitation Act, noting that “there is a significant possibility that disabled applicants who currently reside in the Plaintiff States, or legal permanent residents who return to the U.S. after a 180-day period outside of the U.S., would be deemed inadmissible primarily on the basis of their disability.”

“These injunctions were necessary to recognize the rights of people with disabilities and their families. The courts recognize that the DHS regulations may violate federal and constitutional law and will cause irreversible harm to immigrant families in need of public benefits and services.

“The public charge rule blocked today would discourage immigrant families from utilizing critical public services out of fear of harming their immigration status. It discriminates against people with intellectual and developmental disabilities and their families, and others who use vital programs like Medicaid, the Supplemental Nutrition Assistance Program, housing assistance, and other important benefits. The policy would have allowed the federal government to deny admission into the U.S. based on disability and unfairly restructure immigration in a way that is detrimental to people based on their disability,” said Peter Berns, CEO, The Arc.

In September, The Arc and seventeen national disability advocacy groups filed amicus briefs in support of three cases to block the Trump Administration from implementing the public charge rule. One of the decisions explicitly references our work, noting that “amici provide a compelling analysis of how the factors introduced by the Public Charge Rule disproportionately penalize disabled applicants…” We continue our efforts to ensure that non-citizens with any type of disability have a fair opportunity to enter and live legally in the U.S.

man in hospital bed comforted by friend as doctor looks on

The Arc Rejects Proclamation Barring Immigrants Without Approved Health Insurance

/in , , /by Pam Katz

The Arc is distressed by the Trump Administration’s repeated attacks on immigrants and people with disabilities who are seeking admission to the U.S. We have major concerns about the latest threat, President Trump’s harmful Proclamation, issued October 4, mandating that immigrants applying for visas to the U.S. prove that they will have approved health insurance 30 days after they are in the country or show that they have the ability to pay medical expenses.

The Proclamation means that people who are not “covered by approved health insurance” can’t come in to the country legally, based on the burden they supposedly place on taxpayers, and the strain on publicly funded programs. Medicaid and publicly funded programs are essential for many people with disabilities, and private insurance may not include the services people with significant disabilities typically need. Medicaid is the only insurer that covers many home and community-based services, including personal care services, specialized therapies, and treatment. These are services that support people with disabilities to live, work, and participate in their communities. This new standard from the White House is the latest note in a larger chorus of policies that would exclude immigrants based on their disabilities.

The new policy also does not include coverage under subsidized plans offered in the individual Affordable Care Act (ACA) health insurance market as “approved” insurance. Under the ACA, many people with disabilities now have access to quality, appropriate, comprehensive, affordable, portable, and non-discriminatory coverage and benefits through the exchanges. At the same time, the Proclamation does count “catastrophic” coverage and short-term limited duration policies as approved coverage, neither of which provides the services that a person with significant disabilities may need. 

“Once again, we are called to stand up for people with intellectual and developmental disabilities (IDD) as contributing, valued, and respected members of their communities. The President’s recent Proclamation is unreasonable for people with IDD and their families who are seeking to immigrate to the U.S. Immigration and naturalization policies and rules must recognize the humanity of all persons who wish to enter the U.S. and provide for humane and fair opportunities,” said Peter Berns, CEO of The Arc. “In addition to creating more barriers for people with IDD and their families, the Proclamation is yet another shameful action by the Administration to undermine the Affordable Care Act. Together, we must continue our work to protect the significant achievements of the ACA and its important provisions for people with disabilities and their families, and remain vigilant and active in protecting the human and civil rights of all people with IDD.”

Marca Bristo smiles at the camera, wearing a yellow shirt, black sweater, and glasses.

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

/in , , , /by The Arc

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 , , /by The Arc

In 2019, 37 states still have institutions where people with intellectual and developmental (IDD) 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 IDD.

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.