Today, The Arc of the United States (The Arc) and the National Center for Children in Poverty (NCCP) at Columbia University’s Mailman School of Public Health are releasing Disability Perspectives on Paid Leave: A Qualitative Analysis of Leave-taking Among Workers Affected by Disabilities or Serious Health Conditions. This ground-breaking research examines how workers with disabilities and working caregivers of people with disabilities use, need, and benefit from paid family and medical leave. It is one of the only studies to specifically explore whether current paid and unpaid leave policies and programs for working individuals meet the needs of the disability community. Findings offer key insights on how existing leave policies can become more inclusive to this historically under-served group, and highlight the need for a comprehensive, national paid leave policy.

Researchers at NCCP conducted and analyzed in-depth interviews with 90 workers with disabilities and working caregivers in California, New Jersey, New York, and North Carolina. Major findings include:

• Workers with disabilities and working caregivers take leave for diverse and often disability-specific reasons.
• Workers want to maximize their time at work and benefit when they can use paid leave in conjunction with other employment benefits.
• Workers highly value the Family and Medical Leave Act (FMLA) and state-administered paid leave options, which in this study included programs in California, New Jersey, and New York.
• Multiple barriers and gaps limit workers’ access to leave, including fear of job loss and stigma against disabilities. In states with paid family and medical leave insurance, certain program features also limit access, including low awareness and understanding of the program, inadequate wage replacement, narrow or unclear covered reasons for leave, and inadequate coverage for self-employed and public workers.

Based on these findings, the paper provides recommendations for how policymakers, employers, and advocates can make it easier for all workers to take leave from work during a stressful period of their lives. Most importantly, the findings provide a road map for an inclusive national paid leave policy.

“Our goal with this paper is not only to inform, but also to expand the national dialogue to make paid leave policies and proposals stronger and more inclusive. As this study’s findings show, paid leave is extremely important for people with disabilities and their families, including people with intellectual and developmental disabilities. At The Arc, we believe that our nation can and should put in place an inclusive, comprehensive national paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. We hope this paper provides the blueprint leaders need to advance this process,” said T.J. Sutcliffe, Senior Director, Income & Housing Policy, The Arc.

The need for paid family and medical leave is universal – nearly all of us will need paid leave at some point to care for a family member, address our own serious medical condition, or welcome a new child into our family. The disability perspective, however, has often been missing from the national conversations and research on paid leave, despite the fact that roughly 1 in 5 Americans has a disability. As such, there is a huge gap in understanding on how the disability community uses paid leave, the frequency of use of this benefit, and whether current federal and state policy frameworks and available paid leave programs meet the disability community’s needs.

“It is crucial to hear from working individuals directly affected by serious health conditions and disability to understand how paid leave policies can work better for them. Our in-depth conversations with workers revealed important patterns and policy considerations that deserve more discussion, such as the need for an inclusive definition of family and flexibility to take leave for myriad reasons. This study bolsters current survey research on disability and paid leave by contributing the lived experiences of working individuals,” said Dr. Heather Koball, Director of NCCP.

About the Study: This qualitative study aimed to (1) understand common usage patterns of unpaid and paid leave programs, (2) to assess the priorities of working caregivers and workers with disabilities regarding taking leave from work, and (3) pinpoint ways in which key stakeholders can better support this population of workers. The research team asked participants their reasons for taking leave and about their leave-taking patterns, as well as what factors influence their access to specific leave benefits.

The National Center for Children in Poverty (NCCP) is a non-partisan public policy research center at Columbia University’s Mailman School of Public Health. Founded in 1989 with endowments from the Carnegie Corporation of New York and the Ford Foundation, NCCP is dedicated to promoting the economic security, healthy development, and well-being of America’s low-income children and families. Using research to inform policy and practice, the center seeks to advance family-oriented solutions and strategic use of public resources at the state and national levels to produce positive outcomes for the next generation.

Written in partnership with:

What is the Public Charge rule?

On October 10, the Department of Homeland Security announced the “public charge” rule. This rule allows the U.S. to keep out people who may become a “public charge.” Someone is called a “public charge” if the government thinks you might depend on government benefits to meet your needs. Someone who is called a “public charge” will be discriminated against if they try to enter the U.S. (get a visa) or get a green card (become a permanent resident).

The proposed rule is unfair, dangerous, and blatantly discriminatory. The rule would exclude people from this country simply because they have a disability.

The U.S. has already had a public charge rule for a long time. The new rule will make things much worse. Under the old rule, someone was only considered a public charge if they used cash benefits, like social security or TANF, or if they lived in an institution. The new rule uses a much bigger list of programs and benefits, and it also looks at other things like someone’s health and income.

The Rule Discourages the Use of Important Programs and Benefits

The new rule will discourage families from using important services for fear of harming their immigration status. People with disabilities and our families often need to use government benefits in order to stay fed, housed, and healthy. Under the new rule, using–or even just applying for–these benefits will count against us. Some of the programs and benefits that will count against us under this new rule are:

• Medicaid
• Food stamps, or SNAP
• Medicare Part D assistance
• Section 8 housing assistance
• Children’s Health Insurance Program, or CHIP (they are still deciding whether to include this program)

In addition, the rule will also look at someone’s income. If someone or their family is lowincome, that will count against them.

The Rule is An Attack on Medicaid

The public charge rule is another attack on the basic services people with disabilities receive through Medicaid. The new rule includes the Medicaid-funded services that help people with disabilities stay in our homes, work, go to school, and live in our communities. These services are sometimes called waiver services, personal care services, nursing services, respite, intensive mental health services, and employment supports.

This creates an unfair choice for people with disabilities and our families. Medicaid is the only source for community living supports for people with disabilities. Community services simply aren’t available under private insurance. This rule will force immigrant families to choose between surviving without needed community services or being denied entry into this country just because their family member has a disability and might need services.

The Rule Discriminates Against People with Disabilities

The proposed rule directly discriminates against people with disabilities and chronic health conditions. In addition to benefits, the rule looks at a person’s health to decide if they will become a public charge. If someone has certain medical conditions, that counts against them. If someone doesn’t have a medical condition or a disability, the rule says that is a “positive factor.” This is unfair and discriminatory to people with disabilities and chronic health conditions.

The rule specially calls out people with the “most expensive health conditions,” including:

• Heart disease
• Cancer
• Trauma
• Mental health conditions

The rule also looks at whether or not a person can obtain private health insurance to pay for the medical costs the government thinks they will have because of their chronic health condition or disability. If someone doesn’t have health insurance, that counts against them. But because many important community services are only available through Medicaid and are not covered by private insurance, many people with disabilities won’t pass this test.

In other words, the proposed rule would exclude people with disabilities simply because they have a disability.

The Rule Isn’t Final Yet

If the new rule is put into practice, it will hurt many immigrants and immigrant families, including people with disabilities. But there is still time. For the next 60 days, the Department of Homeland Security is taking comments on the rule. Anyone can comment on the rule, and the government is required to read and respond to the comments. It is critical that the disability community sends in as many comments as possible explaining why this rule is dangerous and discriminatory and why it should not be put into practice. If we all speak up, we can keep this rule from being implemented.

For more information, please visit https://medicaid.publicrep.org/feature/public-charge/ and https://protectingimmigrantfamilies.org/. These websites include information and resources on how to comment.

For more information on this and other topics, visit

• www.thearc.org
• ASAN: autisticadvocacy.org
• CPR: centerforpublicrep.org

Following the draft notice of proposed rulemaking (NPRM) that would impact people with intellectual and developmental disabilities (IDD) who are legally residing in the United States as well as people with IDD who are hoping to legally immigrate, The Arc released the following statement:

“We are facing a civil rights crisis in our nation and people with disabilities are in the crosshairs with the proposed rule released by the Department of Homeland Security. If finalized and administered as is, this rule would discriminate against immigrants with disabilities, making it harder to legally enter or remain in the country. To deport individuals with intellectual and developmental disabilities who are in our country legally or prevent them from immigrating, goes against the values of our nation.

“At The Arc we believe people should have a fair opportunity to legally enter and reside in the United States and become a citizen, without restrictions based on disability. This includes those needing protection as refugees, asylees, and victims of human trafficking.

“Focusing on an individual’s need for support is a form of discrimination against people with disabilities we have seen before. But Congress, in the past, addressed the problem by ensuring that people with intellectual disability are provided accommodations as they try to enter our country legally, become citizens, and achieve the American dream like their peers without disabilities. Broadening the criteria for excluding or deporting immigrants based on need for support will harm people with disabilities and their families who have much to contribute to our society.

“If a family is otherwise eligible to enter or remain in our country, they shouldn’t be turned away or turned out because their child or another family member has a disability and may need to access government services to live and participate in the community.

“We will be offering comments to this proposed rule and hope other organizations and individuals will do the same. It would be disgraceful if this were to be adopted as a final rule. We also call on Members of Congress, as they have done in the past, to stand up for people with intellectual and developmental disabilities and their families as they seek inclusion in America,” said Peter Berns, CEO of The Arc.

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

During August Recess, Members of Congress return to their home states to meet with their constituents. It’s the perfect time for advocates to meet with legislators and tell them #HandsOff important programs – like Medicaid, Supplemental Security Income (SSI), Supplemental Nutrition Assistance Program (SNAP) and much more.

Nobody says #HandsOff during August Recess better than Anthony Nash! Anthony is an active self-advocate in his home state of Washington. He is a member of The Arc’s National Council of Self-Advocates and The Arc of Washington’s Self-Advocates in Leadership (SAIL) coalition. Anthony also serves on the Washington State Developmental Disabilities Council and the board of Disability Rights Washington.

Anthony has fought for issues important to people with disabilities for several years. Here’s what he had to say about advocacy during August Recess:

How did you get involved in advocacy?

I used to work in a sheltered workshop. I got pushed around a lot and even called the r-word there. So one day, I went to the library and asked the librarian for books on disability rights. I read about how people with disabilities have [the same] equal rights as any other person. After that, I joined some advocacy groups and started to stand up for myself.

What does being a self-advocate mean to you?

Self-advocacy means quite a bit to me. A lot of people look down on people with disabilities and think we can’t amount to anything. I do everything I can to prove them wrong. Being a self-advocate lets me show others that we are equal, that we deserve respect, and that we should not be discriminated against in any manner.

Why do you think it is important for people with disabilities to advocate for programs like Medicaid and Supplemental Security Income (SSI) during August Recess?

These programs are our lifeline! Most of our leaders don’t understand that these programs cover significant needs. Since I was four years old, SSI has helped to pay for my food, clothes, transportation, and other living expenses. I use Medicaid to pay for the medicine and doctor visits I need. Self-advocates need to speak up during August Recess when legislators are back home so they know why these programs are important to us.

 

Ready to join Anthony in saying #HandsOff during August Recess? Take a few minutes to call YOUR Members of Congress and tell them why Medicaid and SSI are important to you. Then encourage your family and friends to call, too!