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The Arc and University of Minnesota Release Compelling Data on the Need for Paid Leave for Disability Community in the US

/in /by The Arc

Today, The Arc and the Research and Training Center on Community Living at the University of Minnesota released two new data briefs looking at the work experiences and outcomes of families of people with intellectual and developmental disabilities (I/DD) and the need for paid leave policies. One brief focuses on the experiences of parents raising children with I/DD, while a second brief focuses on the experiences of family caregivers of adults with I/DD.

These data briefs examine subsamples of data from the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The intent of this one-of-a-kind survey conducted by The University of Minnesota’s Research and Training Center on Community Living, in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with I/DD.

The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The two new data briefs delve into family members’ employment outcomes and the importance of paid leave as a benefit for family caregivers. The data briefs revealed that:

• Parents raising children with I/DD and working family members who provide support to adults with I/DD report significant challenges balancing work and caregiving and commonly experience negative employment outcomes.
• Caregivers face major gaps in employer supports. Less than half of working family members reported that they were able to take paid time off to care for their family member with I/DD (42% of parents of minor children, 40% of family members of adults).
• A substantial majority (86% of parents of minor children, 85% of family members of adults) thought that offering partially paid leaves of absence from work to meet caregiving responsibilities would be helpful or very helpful.

“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. Often 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.

“This report paints a picture of the day-to-day needs of caregivers and should ignite action by employers, legislators, and advocates to work together to address the gap in support for employees who require paid leave to support their loved one with a disability. This data brief highlights the importance of paid leave for caregivers in our nation and our hope is that by sharing it we will raise awareness around this issue of national importance,” said Peter Berns, CEO of The Arc.

In tandem with the release of these data briefs, The Arc is releasing a new video which shares the personal story of a family that benefited from unpaid family leave. In the first year of his life, Josh had 10 surgeries and many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. His parents, Victor and Debbi, did their best to juggle their professional obligations with raising their two older children and Victor’s duties in the U.S. Marine Corps Reserve, all while navigating Josh’s complex medical needs and disabilities.

The Family and Medical Leave Act (FMLA) provided salvation for Josh and his family. With the pressures at work mounting, and the need to focus on Josh’s day to day care, FMLA was their family’s last recourse to getting the time they needed to support Josh. Debbie was able to take unpaid leave while protecting her job and health insurance benefits. Most importantly, she was able to spend time with Josh during his time of need. While the FMLA was invaluable, Debbie discusses how paid leave would have helped even more. She invites others to join her in advocating for paid leave.

About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD was in a paid role were not included in the sample.

More than 3,000 people (3,398) met the criteria to be included in the survey and consented to partici¬pate. Caregivers surveyed included respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with I/DD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.

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Filling a Vacuum for LGBTQ Supports: A Conversation With The Arc Mercer’s Steve Cook

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Last year, a client at The Arc Mercer approached Executive Director Steve Cook to confide in him about his struggles feeling accepted in the community. It was an “aha” moment for Steve – and one that led to the creation of what is believed to be among the first initiatives that exists to meet the support needs of individuals with disabilities who identify as LGBTQ.

Members of The Arc Mercer's SNAP program supporting LGBTQ individuals, including executive director Steve Cook, are seated on a couch smiling for the camera.

Tell us about the SNAP program and how it came to exist! What type of activities does it involve?

When I realized that someone we served in our agency was struggling with how to successfully integrate into the community as an LGBTQ individual with special needs, I researched other possible resources and found none really existed that comprehensively provided integrated community settings and professional counseling.

I decided The Arc Mercer would commit to developing a program that not only met the needs of someone who identified as LGBTQ with special needs, but that we would share our experiences to allow others to replicate the program.

That is basically how SNAP was formed.

How is the program helping you build a presence and connections/partnerships in your community – both with media and with other organizations?

SNAP has garnered incredible media support due to its unique status as one of the first of its kind in the nation.

As we shared this organization’s mission throughout New Jersey, and the region, we found leaders of other organizations are receiving feedback from their frontline staff about the need for LGBTQ supports for those that they serve. This has led to an incredible surge in awareness by organizational leaders about the need for this type of support.

How do you create that safe space where individuals to feel comfortable participating in the group activities?

One of our first steps was to identify staff within our organization who sympathize with, and support, the mission of SNAP.

This allowed us to build a supportive environment for those we serve to engage in community activities and dynamic professional counseling sessions (through our health care clinic) that focus on creating integrated and safe community events and professional counseling sessions (individual and group), that have evolved into a social environment for members of SNAP to thrive within.

What does the future of the program look like to you?

It is our hope that the framework of our current SNAP organization, including integrated community events, and a comprehensive counseling program (that encourages individuals, their friends and family, and others who identify as LGBTQ with special needs, to openly communicate about how they feel and their goals), will be able to be replicated throughout the nation.

Why do you think establishing groups like this is important? Do you have any advice for other chapters looking to build out programs that address traditionally underserved/under-represented communities like this?

Chapters of The Arc have always strived to find best practices and share them with other chapters nationally.

I think our experiences will allow others to build programs that create safe environments for those we support to be integrated, healthy and safe in the LGBTQ community.

My advice to any chapter looking to replicate our program is to identify those in your organization who support this mission and encourage them to organize events with LGBTQ organizations in local colleges, schools and community organizations.

More importantly, identify counseling resources to support staff, family members and those we serve who identify as LGBTQ.

This may be hard, but thanks to a suggestion by a member of The Arc’s national team (Allen Miller), we are exploring the use of telemedicine (counseling) through our Healthcare Center.

Of course, I am always available to talk directly with anyone who wants to explore forming a similar group at stevencook1@msn.com.

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Anthony Nash Says #HandsOff During August Recess

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#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.

Anthony Nash stands in front of the Capitol building in Washington DC wearing a long sleeve burgundy shirt and slacks. 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!

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The Arc Opposes Appointment of Judge Kavanaugh to US Supreme Court

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Today, The Arc came out in opposition to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. This opposition is based on Judge Kavanaugh’s record on cases relating to disability and civil rights.

Of particular concern are his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

“We did not take lightly the decision to oppose Judge Kavanaugh’s appointment to the US Supreme Court, but after a thorough analysis of his record, we cannot idly sit by knowing that he has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again. Judge Kavanaugh has written several troubling opinions and dissents on cases related to disability rights and The Arc’s constituents, including those pertaining to education, affordable health care, and self-determination.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“The Arc urges Senators to not confirm Judge Kavanaugh’s nomination to our highest court. The Senate should not confirm a Justice to the Supreme Court whose judicial philosophy threatens the autonomy and well-being of people with intellectual and developmental disabilities,” said Peter V. Berns, Chief Executive Officer of The Arc.

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Back to School Tips for Families of Students With Disabilities

/in /by The Arc

Two sisters with glasses, backpacks, and tablets stand against a white background, with other students unfocused behind them.The start of a new school year can bring both excitement and anxiety for students and parents, especially for families of students receiving special education supports. Students with disabilities who struggle with change may need extra help making the transition to a new school or teacher.

To help families start the new school year off right, The Arc@School offers the following tips:

  • Prepare your children before school starts by discussing any anxiety your child may have, setting clear expectations, and slowly transitioning back to your child’s school routine and schedule.
  • Review your child’s IEP prior to the start of the school year to ensure that the goals, support services, and placement are still appropriate. Make sure to consider any progress or regression your child may have experienced over the summer or since the last IEP.
  • Meet with your child’s teachers and related services providers before school starts to review the IEP together and ensure everyone is on the same page regarding implementation of the IEP. This is also a great opportunity to establish a communication plan with the teachers and related service providers!
  • Once school begins, allow your child some time to get used to the new classes, teachers, and schedule, and your child’s teachers some time to get used to your child’s unique strengths and needs, but do not wait too long to address any issues that might arise!  Having open and respectful communication and dealing with challenges early can help avoid much bigger problems later.

If you have any concerns about your child’s services or supports, you can visit The Arc@School to learn more about your rights and where you can find help.

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The Arc Condemns Plan to Fund Paid Leave by Putting Retirement Security at Risk

/in /by The Arc

Today, Senator Marco Rubio (R-FL) introduced legislation to provide new parents with a partially-paid leave benefit, funded by cutting their future Social Security retirement benefits. Representative Ann Wagner (R-MO) has indicated that she plans to introduce similar legislation in September.

“While we appreciate Senator Rubio and Representative Wagner turning their attention to paid leave, this legislation completely misses the mark. It is unconscionable to make workers choose between time with their family after the birth or adoption of a child and a secure retirement.

“In addition, this legislation offers a very limited benefit that won’t meet the needs of many families, such as parents who need extended leave to care for an infant born with multiple disabilities. Furthermore, this plan doesn’t address the most common reason workers take leave – namely, to address a serious illness of their own or of a family member.

“It is shocking that the authors of this bill think that asking people to sacrifice their future financial security for time with their family is appropriate or a solution. Our nation can and should put in place an inclusive and fiscally responsible paid leave policy that reflects the full range of workers’ leave needs, including people with disabilities and their families. The Arc calls on Congress to reject the Rubio/Wagner plan and the harmful trade-offs that it promotes,” said Peter V. Berns, CEO of The Arc.

A 2017 research paper by The Arc and the Georgetown Center on Poverty and Inequality found that workers with disabilities and working family members of people with disabilities face significant barriers to economic security and stability. On average, lower incomes and added disability-related costs leave many people with disabilities and their families disproportionately living in or near poverty, including in old age. These findings highlight the importance of paid family and medical leave and Social Security to the financial well-being of people with disabilities and their families.

The Arc recently released the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The FINDS Survey results highlight the challenges faced by caregivers of people with intellectual and developmental disabilities (I/DD) in our nation. With respondents reporting an average of 57 hours of support provided to their loved one each week, 95% of caregivers reported being stressed and nearly 50% reporting being very or extremely stressed. Nearly 90% of caregivers reported that partial paid leave would be helpful to them as they support their loved one with I/DD.

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The Arc Responds to Trump Administration’s Final Rule on Short-Term Limited Duration Insurance

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Today, the Department of Health and Human Services released the final “short-term plan” rule. These “short-term plans” can provide hollow coverage with hidden gaps for those who sign up. Expanding short-term plans will raise premiums and reduce plan choices for individuals and employers in the regular insurance market.

The proposal expands availability of a group of products that may implement discriminatory practices. This will likely draw healthier individuals off the Marketplace by offering them skinnier, medically-underwritten products, which will inflate prices and out-of-pocket costs on the Marketplace. The Arc believes that insurance coverage must ensure access to timely, affordable, high quality, and comprehensive health care that meets the needs of individuals with disabilities and chronic conditions.

Expanding access to short-term plans will move us even further away from achieving these goals. Short-term plans are not subject to consumer protections that have tremendous value for individuals with disabilities and chronic conditions, such as mandated essential health benefits, protections for people with pre-existing conditions, prohibitions on use of lifetime or annual caps, and other non-discrimination provisions. For these reasons, The Arc, in partnership with a coalition of other disability rights organizations known as the Consortium for Citizens with Disabilities, released comments earlier this year opposing this rule.

“The Affordable Care Act ended the practice of discriminatory health insurance practices; this rule allows insurance companies to once again set higher premiums based on health conditions. This limits access to comprehensive coverage and that will have a dire impact on people with significant health issues, like individuals with chronic illness and disabilities.

“Make no mistake, today’s final rule undermines current law and puts Americans with pre-existing conditions at risk. We remain steadfast in our commitment to protect the Affordable Care Act and the benefits it provides for people with disabilities,” said Julie Ward, Deputy Executive Officer for Public Policy, The Arc.

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July 2018 #HandsOff Blog: Medicaid and SSI Equal Independence

/in /by The Arc

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

Meet Samera! Samera is 27 years old, a poet, and likes to read books, go to concerts, and spend time with her friends and family. She lives in a home in her community, supported by The Arc of Baltimore.

This month America celebrates its independence, but for Samera and many people with disabilities across the country, programs like Medicaid and Supplemental Security Income (SSI) mean independence.

Samera says, “SSI and Medicaid help me to live in the community with independence. SSI helps to pay for my transportation to run daily errands, go to church, and cover the costs of medications and personal items that Medicaid doesn’t cover. Medicaid covers my wheelchair, and because it covers my wheelchair, I’m able to get around and go out, meet new friends, and do all of the things that everyone enjoys doing.”

Check out the video below to learn more about Samera:

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The Arc Celebrates 28th Anniversary of the Americans With Disabilities Act

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Today, marks the 28th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

“Today we celebrate one of the greatest victories for people with disabilities in America. Our nation leads the world in respecting and valuing the lives of people with disabilities, fighting tirelessly to promote their rights through landmark legislation like the ADA. The passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates. While today we celebrate, we must also recognize recent threats to the ADA and the need for unity in our community. The Arc played a leadership role in the passage of the ADA nearly three decades ago and we remain committed to everything this landmark law stands for. We will actively oppose any attempts to weaken or dismantle the ADA,” said Mary Ford, Senior Executive Officer of Public Policy, The Arc.

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REV UP for National Disability Voter Registration Week, July 16-20

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July 16-20, 2018 is National Disability Voter Registration Week (NDVRW)! The REV UP Campaign, organized by the American Association of People with Disabilities, coordinates NDVRW each year to get people with disabilities registered to vote, educated about the upcoming election, and ready to cast their ballots. REV UP stands for Register! Educate! Vote! Use Your Power! The campaign aims to increase the engagement of the disability community around voting. Across the country, many chapters of The Arc are coordinating events in their communities for NDVRW in partnership with REV UP.

NDVRW is especially important this year because 2018 is big election year, with elections on the federal, state and local levels. People with disabilities have powerful potential to make their perspectives heard by voting. According to a research report from Rutgers University, there were 35.4 million eligible voters with disabilities in 2016. When we include family members of people with disabilities, the disability community makes up 25% of the total electorate. Yet, people with disabilities often face barriers to voting which often leads to the registering and voting in lower numbers than people without disabilities. Let’s change that!

Ready to celebrate NDVRW and make your voice heard? Here’s how you can get involved:

Image says "Register to vote today: National Disability Voter Registration Week July 16-20" and shows a pen filling in a voting ballot.

  • Register to Vote – Make sure you are registered to vote and your registration is up to date.
  • Register your Friends – Spread the word! Make sure your family and friends are registered to vote, too.
  • Find Out More – Registering is just the first step! To learn more about state laws, where to vote, specific elections, and more, visit The Arc’s Know Your Right to Vote webpage and Self Advocates Becoming Empowered GoVoter site.