The Arc Responds to Tax Cuts 2.0 Passed by the House of Representatives

Today the House of Representatives passed a tax bill that would permanently extend tax cuts signed into law at the end of last year in the Tax Cuts and Jobs Act. The Arc released the following statement in response:

“This is more of the same irresponsible tax legislation we opposed last year. Reducing federal revenue as this bill does will increase the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We are disappointed that the House leadership rushed to pass this bill with no consideration of the individuals with disabilities and others who would be negatively impacted. The Senate is our last line of defense, and we implore Senators to do the right thing and oppose this bill,” said Marty Ford, Senior Executive Officer of Public Policy for The Arc.

The Arc on Proposed Rule from The Trump Administration That Would Impact People with Disabilities Legally Residing in the US and Seeking to Legally Immigrate

Following the draft notice of proposed rulemaking (NPRM) that would impact people with intellectual and developmental disabilities (I/DD) who are legally residing in the United States as well as people with I/DD 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.

The Arc Responds to Norm Macdonald’s Down Syndrome Comment

The Arc released the following statement in response to Norm Macdonald’s remarks about people with Down syndrome:

“It is disheartening that yet again we need to remind a public figure to show respect for people with intellectual and developmental disabilities.  What is particularly disturbing about Norm Macdonald’s comment is that in his attempt to explain away his insensitivity to the #MeToo movement, he chose to mock a group of people who have a much greater understanding of victimization than he does.

“People with intellectual and developmental disabilities are seven times more likely to be victims of sexual assault than those without disabilities. Mr. Macdonald’s comment is doubly offensive and shows his ignorance about the disability community. We welcome the opportunity to educate Mr. Macdonald about the disability rights movement and hope that in the future he will show more respect for millions of people with disabilities, their families, and all victims of sexual assault,” said Peter Berns, CEO of The Arc.

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

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.

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

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.