Washington, DC –Today, The Arc and the Georgetown Center on Poverty and Inequality are releasing a first of its kind paper outlining why paid family and medical leave is a necessity for the economic security and stability of people with disabilities and their families.

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’s or our own serious medical condition, or to welcome a new child into a family. Missing from the national conversation is the disability angle. One in five Americans live with a disability. Yet the reality is, in the U.S. workforce, only 1 in 7 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.

“Millions of workers in our economy either have a disability, or have a family member with a disability. Yet largely under the radar has been the disability community – too many people are being forced to choose between a paycheck and their own health or a family member’s health. This paper aims to elevate the disability angle on paid leave, a national issue with growing momentum,” said co-author TJ Sutcliffe, Director, Income and Housing Policy, The Arc.

“If policymakers are serious about improving employment outcomes of people with disabilities, they should work to establish a comprehensive and inclusive paid family and medical leave program,” said co-author Kali Grant of the Georgetown Center on Poverty and Inequality. “We know paid leave has wide-reaching benefits, and that’s particularly true for people with disabilities and their families.”

Many people in the U.S. struggle to get by and pay for basics. That’s particularly true for people with disabilities and their families, who are more likely to live in poverty, have limited savings to fall back on, and face added disability-related expenses and barriers to work.

The paper found that households with one or more members with a disability have an average household income that is only about two-thirds that of households where no one has a disability. As highlighted in the paper, according to the National Disability Institute, 31% of people with disabilities say it is “very difficult” to cover their monthly expenses, compared to 15% of people without disabilities. And 4 in 5 people with disabilities lack any sort of rainy day fund.

Workers with disabilities are particularly likely to be in part-time, low-wage jobs that often don’t offer even basic benefits – much less paid family and medical leave. Over 2 in 3 part-time workers don’t have even one sick day. Workers with disabilities are twice as likely as workers without disabilities to be part-time.

“By offering job-protection, continuing health coverage, and temporary replacement income, comprehensive paid leave has the potential to ensure financial stability for the millions of working families with a member with a disability,” said Grant.

To fully address the needs of all Americans, including people with disabilities and their families, the paper recommends that a national paid leave approach should, among other things, be accessible to all working people and reflect a modern definition of family, cover all the major reasons that people need to take leave (one’s own health, a family member’s health, a new child), replace sufficient wages so that people can make ends meet, be for long enough to promote positive outcomes, ensure that people can keep their jobs and health insurance, and include education and outreach that is fully accessible to people with disabilities.

“Knowing that your job will be there for you if you take paid leave is a must for nearly all of us. And disability knows no geographical, socio-economic, or political boundaries. Other countries have done better, and American workers, including people with disabilities and their families, desperately need better,” said Sutcliffe.

Hear one family’s story about paid leave, and meet others who have personal experience with paid leave.
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 650 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 Georgetown Center on Poverty and Inequality (GCPI) works with policymakers, researchers, practitioners, and advocates to develop effective policies and practices that alleviate poverty and inequality in the United States. Further information about GCPI and their Economic Security and Opportunity Initiative (ESOI) is available at www.georgetownpoverty.org.

Washington, DC – The Arc released the following statement following the defeat of the Health Care Freedom Act in the United States Senate:

“Never underestimate the power of the disability community, who took on this civil rights fight for themselves and future generations.

“The defeat of this disastrous health care bill is a huge win for people with intellectual and developmental disabilities and their families. The Arc thanks all Senators who voted against this bill. Medicaid and the home and community based services and supports program funds are safe, for now.

“Make no mistake – we still have work to do. This year, Congress and the Administration have put on the table over a trillion dollars in cuts to the program, and so the threats remain, whether they resurface in another health care bill, a tax bill, or at any time. Last night, 49 Senators voted for more than $200 billion in Medicaid cuts, and to strip 16 million individuals of their health insurance. Just a few months ago, the House passed legislation that included over $800 billion in cuts to Medicaid, and to take health insurance away from 22 million people. Each vote in favor of these cuts devalued the lives and rights of people with disabilities in our nation. States would have been forced to cut people from the Medicaid rolls or to substantially reduce services; home and community based services were at greatest risk. This harmful bill was crafted behind closed doors, in a disgraceful process that showed a callous disregard for the lives at stake.

“So the work of our movement continues. Advocates across the country will reach out to their Senators and Representatives to thank those who opposed this approach, voice their concerns about threats to Medicaid, and continue to educate elected officials about why Medicaid matters to them,” 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 650 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.

Washington, DC – The Arc released the following statement following the release of the updated Senate Republicans’ health care legislation discussion draft:

“A new draft, new talking points, same devastating impact on people with intellectual and developmental disabilities. It is disheartening to know that Senators were in their districts for the last week, yet the pleas of their constituents with disabilities have been ignored with the latest draft of this legislation. This response to the extensive and impressive outreach from the disability community is an insult to people with disabilities and their families.

“The Better Care Reconciliation Act is an assault on people with disabilities and we implore Senators to do the right thing and oppose this bill. A vote in favor of this bill is a vote against the progress of the disability rights movement and constituents who rely on Medicaid for their independence,” said Peter Berns, CEO of The Arc.

On June 22, 2017, the Senate Budget Committee released a discussion draft of health care reform legislation, the “Better Care Reconciliation Act of 2017” (“Senate bill”). The Congressional Budget Office (CBO) released an analysis of the cost of the bill and the impact on health care coverage. CBO found that at least 22 million fewer individuals would have health care coverage by 2026. CBO also found that the Senate bill cuts Medicaid by $772 billion over 10 years, but the most severe cuts do not begin to take effect until 2025. Starting in 2025, the cuts are billions more than the cuts in the House bill and would increase significantly over time. CBO found that, compared to current law, Medicaid would decrease by 35% in 2036.

The current discussion draft from the Senate did include a woefully inadequate home and community based four-year demonstration program for rural states.  A total of $8 billion is available over four years.  In contrast, the discussion draft retains the $19 billion dollar cut made to the Community First Choice Option which is a program available to any state that chooses the option with no end date.
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 650 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.

Wings for Autism® event volunteers
Photo Credit – Duncan Moffat

Every April, The Arc joins many other disability rights in the US and around the world in celebrating Autism Acceptance month. It is a time to promote greater understanding of the myriad societal barriers that people on the autism spectrum face on a daily basis and encourage greater inclusion within our communities. For The Arc, April marks one of the busiest and most exciting times for one of its most highly celebrated and recognized national programs: the Wings for Autism®/Wings for All® program.

This year, The Arc of the US worked with local chapters of The Arc, airlines, airports and the Transportation Security Administration (TSA) to bring the Wings for Autism®/Wings for All® program to seven different airports across the country during Autism Acceptance month. Nearly 200 families attended these events, many of whom had no prior air travel experience out of fear that being in an airport or on an aircraft would be too difficult and frightening for their loved one with intellectual and developmental disabilities (I/DD).

WCNC forecaster Larry Sprinkle
Photo Credit – Duncan Moffat

The month began with a festive and historic Wings for Autism® event at Charlotte Douglas International Airport (CLT). The Arc of Mecklenberg County and The Arc of Union/Cabarrus County teamed up with The Arc of the US, Delta Air Lines, TSA an the Doug Flutie Foundation to bring the event to CLT airport for the first time in the program’s history. To honor the occasion, local celebrity and weatherman for WCNC-Charlotte, Larry Sprinkle, was on hand to greet families, take photos and announce the Wings for Autism® flight prior to boarding.

After boarding the plane and visiting the cockpit, participants took their seats for a brief taxi around the runway, which allowed for passengers with disabilities get accustomed to the sensations of a moving plane. As the aircraft came back to the gate, all those on the plane and gate area were surprised with a water cannon salute – an honor reserved only for retiring pilots, inaugural flights for new flight routes, and other rare occasions during which two firefighting rigs spray arcs of water over an arriving or departing flight. This came as a surprise to all families on board, event staff and even several of the flight crew who had never witnessed this unique aviation tradition.

A full flight
Photo Credit – John McHugh/Ocaid Photography

We were delighted to take part in South Bend International Airport’s second Wings event. Not only did Wings provide our new officers with valuable experience of working with individuals with intellectual and developmental disabilities, it also allowed them to share in the joy felt by parents and children as they successfully passed through our security checkpoints. – Armand Collins, Transportation Security Manager, TSA.

These events have an incredible impact on people with disabilities and their families, and we often get heartfelt notes after the event. One such note read: “I don’t have the words to adequately express my thanks for this evening’s Wings for Autism event. We have been so worried about how our daughter would deal with the plethora of unknowns associated with air travel and you have now made future air travel a reality for us. Too many times, as a parent of a child with ASD, you feel like doors are closed to your child and/or your family. Well, tonight, you gave her wings!”

Representatives from Delta Air Lines, CLT airport and TSA were also amazed and humbled by their Wings experience. “Being able to host a Wings for Autism Event was a very special moment for the Delta team in Charlotte,” said Jill MacDonald, Delta Air Lines. “As airline employees we take air travel for granted and for our team to be able to open up the possibility of flying for the families of children and young adults with autism, that was extremely gratifying. This was an unforgettable experience and one that we look forward to hosting for many years to come.”

The Arc of Mecklenberg and The Arc of Union/Cabarrus were thrilled and look forward to another Wings event in the future. “Wings for Autism was probably the most meaningful and impactful event I have been part of professionally,” said Nancy Hughes, Executive Director, The Arc of Mecklenberg. “Delta, Charlotte Douglas International Airport, and TSA all went above and beyond to make the event amazing for participating children and families. The consensus feedback from families indicated that it was life-changing, because it opened the door to travel that many thought was closed.”

Looking for a Wings event in your city? Keep an eye on our event listing!

Originated by the Charles River Center, a local chapter of The Arc in Massachusetts, and the Massachusetts Port Authority, Wings for Autism® was created to alleviate some of the stress that families who have a child with autism experience when traveling by air. The program also provides TSA agents, airline and airport staff with a unique perspective on the challenges that individuals with autism spectrum disorders and other disabilities face in air travel and much-needed training on how to better meet the needs of individuals with disabilities and their families.

Washington, DC – The Arc released the following statement following the House of Representatives pulling the vote on the American Health Care Act (AHCA): 

“We are pleased that this dangerous piece of legislation is not being considered on the House floor. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the American Health Care Act over the last few weeks. This bill showed a callous and dangerous disregard for the wellbeing of people with disabilities and those with complex medical needs.

“We want to acknowledge the amazing advocacy of The Arc’s grassroots advocates across the country who have been fighting tirelessly to protect the Affordable Care Act and Medicaid. Earlier this week, we had nearly a thousand advocates gathered in Washington, DC to share their stories and show their Members of Congress that this is more than just politics, this is life and death for people with disabilities. The last few weeks gave the disability rights movement an opportunity to show their strength. Collaborating with our colleagues across the disability rights movement, health advocates, and social justice groups was an empowering experience. We remain unified and ready to fight future threats together.

“Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation and programs like the Americans with Disabilities Act, Individuals with Disabilities Education Act, the Social Security Disability Insurance Program, Supplemental Security Income, Medicaid and other important laws. The American Health Care Act had the potential to erase decades of progress if significant changes weren’t made. We will continue our efforts to change the hearts and minds of those who supported this bill and help them understand that their constituents rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. Those are the Members of Congress we need to reach; we need them to realize what is at stake. While we are heartened by this victory, we will remain vigilant. We know our work is far from over,” said Peter Berns, CEO of 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 650 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.