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The Arc Announces Voter Accessibility Project for Iowa Caucuses

Washington, D.C. – In advance of the Iowa caucuses, The Arc is announcing its new CaucusAbility project to help ensure that people with intellectual and developmental disabilities (I/DD) in the battleground state have the opportunity to participate in our democracy in accessible, fair, and valuable ways.

The Arc will host pre-caucus trainings where Iowans with I/DD can learn how to caucus, practice the process, and also team up with a partner with disabilities or without disabilities to encourage caucus participation and to attend caucuses together.

People with disabilities face voter accessibility challenges and barriers to the caucus process, from crowded gymnasiums to limited seating. The caucuses are also unique in format – attendees may go in with a preference for a candidate, but throughout the event they will listen to other caucus goers make pitches for their preferred candidate. Quickly analyzing and processing the information and making an informed decision in that environment can be daunting. Furthermore, Iowa’s new and untested satellite caucus system for remote participation may be an additional barrier for people with I/DD.

WHO: The Arc

WHAT:  CaucusAbility

WHEN/WHERE:

Wednesday, January 15 Collegiate United Methodist Church Annex, Ames 1 p.m., 5:30 p.m.

Friday, January 17 Sioux City Public Museum, Sioux City 11 a.m., 12:30 p.m.  

Monday, January 20 Iowa City Public Library, Iowa City 10:30 a.m., 12:30 p.m.

WHY: Voter Accessibility

“The Arc is dedicated to a fully inclusive society for people with intellectual and developmental disabilities and that includes the right to civic engagement. Having the support of a partner at the Iowa caucuses and the opportunity to practice in advance will help people in the disability community exercise their right to vote. We know that in 2012, one in five voters with disabilities experienced a barrier at the polls. We believe CaucusAbility helps address some of the unique accessibility challenges Iowans with disabilities experience at the caucuses, despite equal access protections under civil rights law,” 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 woman in the motorized chair in the grass

Community Living Program Extension Passes: 2020 Year to Advocate for Deinstitutionalization

Washington, D.C. – This week, instead of finalizing a deal that would provide certainty and stability to a program that moves people with intellectual and developmental disabilities (I/DD) out of institutions and into the community of their choice, Congress reauthorized the program for only five months.

The Money Follows the Person program, or MFP, provides funds to states to continue their work on deinstitutionalization, by paying for programs not normally covered by Medicaid, such as housing and employment services. MFP has moved more than 91,000 people with disabilities and aging adults out of institutional settings and back into the community, where they belong. The program has also shown better quality of life outcomes and Medicaid savings averaging 20% per beneficiary per month.

Just a few weeks ago, a bipartisan deal was on the table to permanently extend the program. But in the final negotiations, the length of the support of the program was changed to five months.

“While this is a disappointing turn of events, we have our marching orders for 2020 – advocate, advocate, advocate for a permanent commitment to Money Follows the Person. There is widespread, bipartisan support for this successful program. If we are going to achieve the goal of bringing people out of the dark shadows of institutions to live meaningful, independent lives in the communities of their choice among their family members and peers, with appropriate supports and services, then Congress has to step up. We are ready to help make that happen in 2020,” 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.

Couple hugging outside both with eyes closed

Paid Leave for Federal Workers Approved by Congress – But Falls Short for Disability Community

Washington, D.C. – This week, Congress approved 12 weeks paid parental leave for federal workers caring for newborns, newly adopted children, and foster children, but the benefit falls short. Federal employees with disabilities and their family members need paid time off for their own medical needs and for caregiving for reasons beyond welcoming a new child and we are disappointed that the country’s largest employer now has a paid leave policy that does not include these crucial components.

“We are somewhat encouraged to see Congress take a small step in the right direction, but this paid parental leave policy is not enough. We need comprehensive paid leave for everyone that works for everyone, including people with disabilities and their families. We will continue to advocate for the needs of the disability community in paid leave – Congress can and should do more,” said Peter Berns, CEO, The Arc.

In the U.S. workforce, only 1 in 6 workers has access to paid family leave to care for a family member with a serious health condition. Roughly 2 in 5 workers report they lack access to any paid leave. People with disabilities and their families often experience greater financial insecurity and are more likely to face barriers to employment that can render the financial impact of unpaid time off particularly devastating.

Comprehensive paid leave increases opportunities to take time off for a serious medical condition or to care for someone with a serious medical condition without seeing a sharp drop in income or putting one’s job or employer-based health insurance at risk. In addition, it can increase access to preventive care, such as going to doctor’s appointments, and lead to better overall health and well-being. Access to paid family and medical leave can help workers balance their personal care needs while working and providing support to a family member.

“Our expectation is that the federal government set the tone for other employers to enact paid leave policies that work for everyone. We will keeping fighting on this issue so that workers with disabilities and families that include people with disabilities one day have the comprehensive leave they need to contribute in the workforce and take care of their families,” said Berns.

The Arc has cultivated several national partnerships to bring the issue of paid family and medical leave further into the public spotlight and advocate on the federal level. Learn more about our work.

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 man in the hospital bed

The Arc Deeply Troubled by Affordable Care Act Ruling

Washington, D.C. – The Arc is deeply troubled by Wednesday’s Federal Appeals Court ruling in Texas v. United States jeopardizing the health care of millions of people with disabilities. In a disappointing decision, the Fifth U.S. Circuit Court of Appeals declared part of the Affordable Care Act (ACA) unconstitutional. In sending the case back to the lower court that previously declared the entire ACA unconstitutional, the opinion leaves uncertain how much of the ACA will ultimately be struck down, putting the law and all of its vital protections at risk in the future.

People with intellectual and developmental disabilities (I/DD) who rely on the ACA could lose access to affordable and necessary health care, as well as important protections for people with disabilities and other pre-existing conditions.

The hard-fought expansion of Medicaid under the ACA is also at risk. More than 17 million people who gained coverage as a result of the expansion now face the cruel reality of possibly losing it including many people with disabilities. The relentless advocacy of The Arc and allies in the Medicaid fight of 2017 to preserve the ACA could be undone, causing irreparable harm to people with disabilities and their families, who face frustrating challenges accessing affordable and quality health care. Also, the decision itself points out that other important Medicaid programs that have moved people with disabilities back to their communities, such as the Community First Choice Option, hang in the balance.

“This decision is a threat to people with disabilities and their families. The Affordable Care Act’s protections for people with pre-existing conditions are the most important non-discrimination protections in health care. The ACA has been critical to improving health care access for people with disabilities,” said Peter Berns, CEO, The Arc. “While this decision won’t have an immediate impact, the potentially harmful consequences are widely understood – even the Fifth Circuit decision notes that the impact to people with disabilities must be a consideration. We fully support plans by several state attorneys general to challenge the decision all the way to the U.S. Supreme Court. People should know that the ACA remains the law of the land for now and any insurance coverage remains intact. The Arc has fought for accessible health care for people with I/DD every step of the way and we will continue to do so.”

In April, The Arc and several other organizations representing people with disabilities filed an amicus brief to urge the Fifth Circuit to reverse a lower court ruling finding the ACA unconstitutional. The brief outlined how the ACA has been essential to overcoming the disproportionate impact that America’s health care crisis has had on people with disabilities, and how it is uniquely difficult for people with disabilities to obtain affordable and adequate health insurance coverage despite depending on health care services more than those without disabilities.

The institution hallway

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

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 (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.

brittany-simuangco

The Arc Applauds Federal Action to Support Parents With Disabilities

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 (I/DD) under federal civil rights law. Parents with I/DD 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 I/DD does not itself preclude effective parenting. Parents with I/DD 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 I/DD 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 I/DD are available, so that parents like Amy Fabbrini and Eric Ziegler in Oregon can raise their children whenever possible.”

close up of medical form with stethoscope

Open Enrollment and Disability: What You Need to Know

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.

The Arc logo

The Importance of Paid Leave: A Sibling Perspective

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 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 (I/DD).

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 I/DD 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.

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Congressional Testimony: The Direct Care Crisis

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 (I/DD) 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