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 Partners With Advance Auto Parts for Hiring Initiative for People With Disabilities

In honor of National Disability Employment Awareness Month (NDEAM), The Arc is pleased to announce that it has partnered with Advance Auto Parts on a pilot program to create meaningful job opportunities for people with disabilities at Advance’s Distribution Centers. The program’s first pilot site is at Advance’s Distribution Center in Denver. The plan is to expand the pilot program to include Distribution Centers in other locations in the coming months.

Spearheaded by Advance’s “Different Abilities” Employee network and The Arc@Work, the project aims to build upon Advance’s current disability-inclusion initiatives and offers competitive, dynamic, and meaningful job opportunities to individuals with disabilities throughout Advance. This year’s theme for National Disability Employment Awareness Month is “The Right Talent, Right Now,” which calls upon employers around the country to address the persistent gaps in employment between people with and without disabilities. According to the U.S. Department of Labor, the national unemployment rate for people with disabilities is twice that of people without disabilities (7.2% vs. 3.6%), a gap that has remained static for years. Advance and The Arc@Work are working together to not only narrow this gap, but also support Advance in realizing the value of hiring employees with disabilities.

“The Arc@Work is thrilled to kick-off this great initiative with Advance,” said Jonathan Lucus, Senior Director of Workforce Strategy at The Arc. “People with disabilities are proven to be reliable, loyal, and productive employees, but employment rates for these individuals remain critically low compared to those for jobseekers without disabilities. Research shows that hiring people with disabilities gives a competitive edge and is better for business. This partnership gives jobseekers with disabilities a chance to realize their potential and Advance an opportunity to discover how much hiring the individuals we serve will positively impact their business.”

This pilot program launched in Denver and will move to other markets in the coming months. For the project, The Arc@Work and Advance are working with disability services agencies to identify, train, and hire motivated and qualified job seekers with disabilities. The Arc@Work is also providing disability awareness training and accessibility consultations to enhance the Distribution Center’s ongoing disability inclusion efforts. The main objective of the project is to create a sustainable and scalable methodology for hiring people with disabilities that can be replicated at other Advance Auto Parts distribution centers and stores in Colorado and around the country. For questions on the project or on how to get involved, contact The Arc@Work.

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.”

man in hospital bed comforted by friend as doctor looks on

The Arc Rejects Proclamation Barring Immigrants Without Approved Health Insurance

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 (I/DD) as contributing, valued, and respected members of their communities. The President’s recent Proclamation is unreasonable for people with I/DD 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 I/DD 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 I/DD.”

The Arc logo

The Arc Demands Charges Against Officer in Costco Shooting

The Arc is outraged by the decision not to file criminal charges against the Los Angeles police officer who shot and killed Kenneth French, a man reported to have had intellectual disability, at a California Costco store in June. Kenneth was nonverbal and also lived with mental health issues, according to his family.

While Officer Salvador Sanchez was holding his child, he was pushed or hit by Kenneth — who was unarmed. Sanchez used excessive force and recklessly ended the young man’s life, despite reported warnings and pleas by Kenneth’s family explaining that he had intellectual disability. Sanchez fired 10 shots, also critically wounding Kenneth’s parents.

“Officer Sanchez should face criminal charges. Based on the evidence made public, we are outraged by the grand jury’s recommendation. We are infuriated that Riverside County District Attorney Mike Hestrin also declined to file charges. Both decisions raise serious concerns for the disability community and all communities disproportionately impacted by unwarranted police violence, a problem that has plagued our country far too long.

“The criminal justice system has failed the French family. At a minimum, charges should be filed and a full trial held. Let a judge or jury decide whether a crime has been committed after all the evidence is presented.

“Kenneth French and other people with disabilities have the right to be in the community, shopping with their family or doing any other ordinary activity, without a police officer shooting and killing them. Kenneth’s death is a senseless tragedy that magnifies the troubling divide between law enforcement and all people they are sworn to protect and serve,” said Peter Berns, CEO, The Arc.

The Arc makes it a priority to build strong, respectful relationships between the disability community, the criminal justice system, and law enforcement personnel across the country. Our National Center on Criminal Justice and Disability (NCCJD) trains attorneys, judges, law enforcement officers, and victim advocates nationwide through Pathways to Justice. We educate them on issues facing the disability community and how to safely and effectively interact with people with intellectual and developmental disabilities, who are at least two times more likely to become victims of violent crimes.

“There is an urgent need for officer training, intentional relationship-building with people with disabilities and agencies that serve them, and the use of de-escalation techniques. The Arc will continue to follow the case closely, as LAPD investigates and Kenneth’s family pursues legal action,” said Berns.

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!

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.

Trump Administration 2020 Budget Request: Old Ideas and Big Cuts

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

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

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

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

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

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