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.

If you need a refresh on the rules, regs, and responsibilities of our network check out The Arc’s Bylaws and Standard Terms and Conditions. For example, did you know that:

• The Arc can provide chapters with a list of The Arc’s individual members from your geographic area annually
• Chapters are expected to submit updated contact information for corporate officers, board members and key management staff each year
• Chapters must prominently identify themselves to the public as an affiliated Chapter of The Arc
• Chapters can establish associate memberships as part of your fundraising program

Make sure you are in-the-know on everything your chapter should be doing, as well as everything we have to offer you!

Marty Ford appointed Senior Advisor, Julie Ward appointed Senior Executive Officer for Public Policy

After more than 34 years with The Arc’s public policy team (and a total of 40 years in The Arc network), Marty Ford is transitioning from Senior Executive Officer for Public Policy, a position she has held for 8 years, to a new part-time position of Senior Advisor. Marty is a well respected nationwide expert on many public policy issues, including Social Security and Supplemental Security Income, Long Term Supports and Services, and trusts and financial planning approaches. During her tenure as the Senior Executive Officer, Marty led the policy team through a rigorous defense of the Medicaid program, implementation and defense of the Affordable Care Act, enactment of the ABLE Act, and many other significant advances. Marty served three years as Chairperson of the Consortium for Citizens with Disabilities (CCD), a coalition of over 100 national organizations. The Arc deeply appreciates Marty’s work and leadership in these areas and is fortunate that she will continue in her new staff role to support the Policy and Positions Committee of the Board of Directors, advise the Federal Policy Advocacy team, continue to represent The Arc in various external leadership positions, and work closely with the Chief Executive Officer on special projects.

The Arc is also pleased to announce that Julie Ward, the Deputy Executive Officer for Public Policy, has been promoted to the position of Senior Executive Officer for Public Policy. In addition to her new responsibilities, Julie will continue her leadership positions related to health care policy and planning the Disability Policy Seminar. Julie has over 30 years of experience representing people with intellectual and/or developmental disabilities before Congress, the federal agencies, and state legislatures. Prior to holding the deputy executive officer position, she was the Director of Health Policy. She has extensive knowledge and expertise in policies related to the Affordable Care Act, Medicaid, Medicare, private health insurance, medical research, drug development, and public health issues. Previously, Julie represented The Arc and United Cerebral Palsy for seven years as part of the Disability Policy Collaboration (DPC). In that role, she had primary responsibility for budget and appropriations,
employment, TANF, Medicare Part D, and transportation issues. She spent 18 years with the Epilepsy Foundation, the last ten years as the Senior Director of Government Affairs, overseeing the Foundation’s federal and state advocacy program.

Trudy Jacobson appointed Senior Advisor, Casey Nitsch and Laura Rahman to Lead Fundraising Programs

After nearly 10 years with The Arc’s development team, Trudy Jacobson is transitioning from the Senior Executive Officer for Development & Partnerships to a new part-time position of Senior Advisor. Trudy is a well-respected professional in the areas of development and marketing and during her tenure as SEO she led the organization through its rebranding and the growth of its individual, corporate, and foundation support programs including the development of several major corporate partnerships and a national partnership with Comcast NBCUniversal. Trudy has contributed significantly to the growth of The Arc’s overall revenue, and the development of its fundraising program for the future, since joining the staff. The Arc deeply appreciates Trudy’s work and leadership in these areas and is pleased that she will continue in her new staff role to advise the organization in areas of her expertise. She will continue working closely with members of The Arc’s Board of Directors and its Resource Development Committee, represent The Arc to a portfolio of funders, and work with the Chief Executive Officer on other projects.

The Arc is also pleased to announce that Laura Rahman, Director of Individual Philanthropy, and Casey Nitsch, Director of Corporate, Foundation, and Government Support will be taking on additional leadership responsibility at The Arc as part of this transition. Laura joined The Arc in 2011 as a Development Associate and has been promoted twice, assuming her current position during June 2016. She is taking on responsibility for leading The Arc’s fundraising from individuals. Casey joined The Arc in 2011 as a Research Associate and has been promoted twice, assuming her current position during 2016. She is taking on responsibility for leading The Arc’s fundraising from foundations, corporations, and government.