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.

DSP-Congressional-testimony

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

The Arc logo

The Arc Supports Clemency for Brendan Dassey

October 24, 2019

The Honorable Governor Tony Evers
Office of the Governor
Attn: Pardon Advisory Board
PO Box 7863
Madison, WI 53707

Re: Clemency For Brendan Dassey

Dear Governor Evers:

As leaders and experts in the disability community in Wisconsin and nationally working to seek justice for those with I/DD who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability, we write to urge you to grant the executive clemency petition of Brendan Dassey.

We have deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. However, as Mr. Dassey’s attorneys explain in detail in his clemency petition, Mr. Dassey’s record is replete with evidence of intellectual and developmental disabilities and shows that he did not receive proper accommodations during the interrogation process, resulting in a coerced confession. He has now served nearly thirteen years in prison based solely on this unreliable confession.

Sadly, our prisons and jails hold too many people with disabilities, including I/DD, who are robbed of fair treatment within the justice system. Since Mr. Dassey was convicted, there has been significant growth of knowledge and understanding of how certain individuals, including those with I/DD, can be more susceptible to authority figures, coercion, and misleading tactics. Police officers, investigators, attorneys, correctional officers, and others are not adequately trained to identify people who may have I/DD or how to accommodate their needs, which is especially critical during interrogations. This lack of understanding and failure to provide accommodations all too frequently leads to tragic results, such as individuals giving incriminating statements or false confessions because the individual with I/DD is manipulated, coerced, misled, confused, or desires to please the questioner. As noted in Mr. Dassey’s petition, psychological testing performed at trial indicated that challenges related to his disabilities rendered him more susceptible to coercion than 95 percent of the population.

According to the Bureau of Justice Statistics, incarcerated persons are at least three times as likely to report having a disability as the nonincarcerated population. Cognitive disabilities—such as Down syndrome, autism, dementia, intellectual disabilities, and learning disorders—are among the most commonly reported: Prison inmates are four times as likely and jail inmates more than six times as likely to report a cognitive disability than the general population. Specifically, people with I/DD make up 4-10 percent of the prison population, but only 1.5 percent in the general population. Some are incarcerated because, like Mr. Dassey, they were coerced into giving confessions and many do not receive the accommodations to which they are entitled, putting them at greater risk. Our prisons and jails hold too many Brendan Dasseys, too often forgotten, some not even recognized as being robbed of justice.

We do not seek to eliminate punishment of people with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. We are committed to seeking lawful outcomes for people with I/DD and will continue working to ensure that jurisdictions across the country provide the accommodations to which people with disabilities are entitled by law.

Mr. Dassey, and others with disabilities, have the right to justice and fair treatment in all areas of the criminal justice system and must be afforded the supports and accommodations required to make justice and fair treatment a reality. This did not happen in Mr. Dassey’s case and we call on you to consider this miscarriage of justice when reviewing Mr. Dassey’s executive clemency petition.

 

Respectfully,

Peter Berns
Chief Executive Officer 
The Arc of the United States

Lisa Pugh
State Director
The Arc Wisconsin

Maria Town
President and CEO
American Association of People with
Disabilities

Claudia Center
Senior Staff Attorney
Disability Rights Program
American Civil Liberties Union

Natalie M. Chin
Joe Rosenberg
Co-Directors
Disability & Aging Justice Center
City University of New York School of Law

Andrew J. Imparato
Executive Director
Association of University Centers on
Disabilities

Amy F. Robertson
Co-Executive Director
Martha M. Lafferty
Director of Accessibility Projects
Civil Rights Education and Enforcement
Center

Robert D. Dinerstein
Professor of Law and Director, Disability Rights Law Clinic
American University, Washington College of Law*
*For identification purposes only

Prianka Nair
Director
Sarah Lorr
Deputy Director
Disability and Civil Rights Clinic:
Advocating for Adults with Intellectual
and Developmental Disabilities
Brooklyn Law School

Public Charge Amicus Brief

The Arc Applauds Federal Injunctions Against Public Charge Rule

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 15th. 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.

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

The Arc and Partners File Amicus Brief Challenging Discriminatory Actions of Dallas Housing Authority

This week, The Arc and other national and local disability and civil rights advocacy groups—represented by the law firm WilmerHale—filed an amicus brief before the U.S. Court of Appeals for the Fifth Circuit in the case Community for Permanent Supported Housing et al v. Housing Authority of the City of Dallas. The brief provides background on the affordable housing crisis facing people with disabilities and explains that the promise of the Americans with Disabilities Act’s (ADA) “integration mandate” cannot be fully realized without affordable, independent housing opportunities in the community. The brief was joined by the American Civil Liberties Union, the American Civil Liberties Union of Texas, The Arc of Texas, Disability Rights Advocates, the Judge David L. Bazelon Center for Mental Health Law, and the National Disability Rights Network.

The case, filed in federal district court in the Northern District of Texas in 2018, challenges the Housing Authority of the City of Dallas’s (DHA) refusal to use the U.S. Department of Housing and Urban Development’s (HUD) Project-Based Voucher (PBV) rent subsidy program to provide otherwise scarce affordable, independent housing opportunities for people with intellectual and developmental disabilities (I/DD) in the community. DHA was poised to offer such PBVs—each of which would permit a single-family house to be rented at subsidized rates to several people with I/DD who can live independently with appropriate supports—but then canceled its offering and has refused to offer any substitute, without any good reason. The lawsuit alleges that DHA’s actions violate the ADA, Section 504 of the Rehabilitation Act, the Fair Housing Act, and state law. The district court dismissed the case in April 2019 and Plaintiffs appealed to the Fifth Circuit. Plaintiffs are represented by Relman, Dane & Colfax PLLC, a Washington, D.C. based civil rights law firm, and Disability Rights Texas, a statewide protection and advocacy organization. The amicus brief supports Plaintiffs’ request to reverse the district court’s dismissal order and let the case move forward.

As the brief explains, in 1999, the U.S. Supreme Court held in Olmstead v. L.C. that “unjustified institutional isolation of persons with disabilities is a form of discrimination” under the ADA and, as such, the ADA requires public entities to administer programs “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.” But this integration mandate cannot be fully realized without affordable housing opportunities in the community that enable people with I/DD to live outside their family homes. For many adults with I/DD currently living with family, opportunities that allow them to live in the community separate from their families are often preferable because these opportunities provide greater independence and autonomy. Additionally, living in the community separate from their families can be critical for adults with I/DD to avoid homelessness or institutionalization when a supporting family member inevitably ages and reaches a point where she or he can no longer provide shelter or support. Of the more than 100,000 people with I/DD living in North Texas, around 75% live with at least one family member into adulthood because of a shortage of affordable housing that would enable them to access community-based support services in homes apart from their families.

“Defendant DHA has publicly acknowledged that two-thirds of adults with I/DD in North Texas ‘may be at risk of institutionalization or homelessness’ due to a severe affordable housing crisis. These numbers are unacceptably high and represent a crisis that must be urgently addressed,” said Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel for The Arc. “DHA’s actions violate numerous federal and state civil rights laws and harm Plaintiffs by unduly restricting opportunities for community-based housing that offer more independence and autonomy and puts individuals with I/DD in North Texas at risk of homelessness and institutionalization. Plaintiffs should have the opportunity to prove their allegations on an issue as critical as community-based, affordable housing opportunities for people with disabilities.”

“We are proud to represent a number of disability and civil rights advocacy organizations as amici on this important issue,” said Christa Laser, an attorney with the global law firm WilmerHale. “We hope that this amicus brief helps to advance the rights of people with disabilities by ensuring meaningful access to affordable housing opportunities in the community.”

map of the united states, filled in by various shades of blue figures

#becounted

Are you ready to be counted? The 2020 Census is coming up and it is critical for people with intellectual and developmental disabilities (I/DD) and their families. The census seeks to include every individual living in the United States, but many people with disabilities are historically left out of the countharmfully impacting funding, services, and supports.

Census data helps guide the distribution of more than $800 billion in federal funding. The count, conducted every 10 years, is also directly tied to key funding streams that support people with disabilities to live in the community, instead of institutions. It determines political representation and affects public policy, as well as programs and supports in housing, voting, education, health care, and public health. The Census Bureau recognizes people with disabilities as a hard-to-count population, meaning that they may not be fully represented in the count, and that the programs that are important to them may not receive the consideration they deserve.

The Arc is excited to announce a major initiative to find solutions. We are pleased to share that we have received a grant from the Ford Foundation to launch a project to help ensure that people with disabilities are counted in the 2020 Census. We recognize the Ford Foundation’s generosity and engagement in the fight for disability rights.

In planning for Census 2020, The Arc will develop and share materials to motivate and inform people with I/DD to respond to the count in order to produce more complete and fair data. Our outreach will include our chapter network and membership, and partnerships with national disability groups and advocacy organizations. 

The Arc has also joined the Census Bureau’s National Partnership Program to help raise awareness, share resources, and work together to ensure that all people are counted in 2020.

#becounted

All of our materials will be posted at thearc.org/census – please check back soon!

New Video: Direct Support Professionals Need Our Support

The Arc celebrates “National Direct Support Professionals Recognition Week” beginning September 8, 2019. Direct support professionals (DSPs) play a fundamental role in the lives of people with disabilities. Their presence and assistance allow people receiving services to lead independent and full lives.

Direct support professionals help people with disabilities manage personal care, communication, household tasks, building relationships, and navigating the community. DSPs are invaluable to the disability community and the service systems that rely on their ability to keep people out of institutional settings.

But DSPs are paid low wages, and turnover is high. The result is a workforce crisis.

The *numbers are staggering for DSPs:

  • $11.76 average hourly wage
  • 15% of agencies provide DSPs with health insurance
  • 46% average state-wide turnover rate
  • 12% overall vacancy rate
  • 38% of DSPs left their position in less than 6 months

This workforce crisis has real-life impacts on DSPs and people with disabilities. Without consistent support from a well-paid and trained workforce, individuals with disabilities do not receive the proper services they need to live meaningful lives.

To better understand why DSPs need our support, watch our new video.

*National Core Indicators

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.

The Arc logo

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.