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The Arc Responds to Tax Cuts 2.0 Passed by 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.

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The Arc on Proposed Rule From 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.

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We Want your SSA Stories!

The Arc and Justice in Aging are interested in speaking with people about their experiences with the Social Security Administration’s (SSA) failure to provide for reasonable accommodations for people with disabilities in the context of continued benefits. SSA requires that Supplemental Security Income (SSI) recipients who are facing suspension or reduction of their benefits file an appeal within 10 days in order to continue to receive their monthly payment while their appeal is pending.

However, SSA is not providing adequate assistance to people with disabilities such as mental health conditions, cognitive impairments, or intellectual disability, who may need help with filing their appeals so they can continue to get their SSI benefits while a decision on the appeal is pending. SSA fails to include with the suspension/reduction notice any information regarding the right to seek a reasonable accommodation (including more time to appeal), fails to inform individuals how to seek assistance at the local office, and even fails to include with the notice the form they need to fill out to appeal.

We are looking at whether SSA is providing help to people who need it and who didn’t get continued benefits. We are interested in speaking with SSI recipients who:

1. Received a notice from SSA that their SSI benefits were being reduced or suspended for reasons other than their disability (e.g., being over the income or resource limits, a change in their living situation). Note: this does not include people who are applying for SSI and are denied, or SSI recipients who are undergoing a Continuing Disability Review or who only received a notice of overpayment;

2. Would have sought continued benefits while their appeal was pending but were unable to do so; and

3. Had trouble processing and acting on information in the SSA notice due to a mental health condition, a cognitive impairment, or an intellectual disability.

If you or your clients are experiencing these issues, please contact Shira Wakschlag, The Arc’s Director of Legal Advocacy & Associate General Counsel to discuss further: Shira@thearc.org; 202-534-3708.

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September 25: National Voter Registration Day

Tuesday, September 25 is National Voter Registration Day 2018! Across the country, organizations, like chapters of The Arc, will be working to register individuals, so everyone can fully participate in our democracy.

Find out how to get involved at NationalVoterRegistrationDay.org and check out the sample social media posts and graphic below to help spread the word online:

Sample Posts:

  • It’s National Voter Registration Day – are you registered? vote.gov
  • Recently moved or turned 18? Haven’t voted in a while? Update your voter reg at NationalVoterRegistrationDay.org #NationalVoterRegistrationDay

Sample Graphic :

 

 

 

 

 

 

 

Please contact Claire Manning, director of Advocacy and Mobilization with any questions.

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Talking about Dementia Guide

Often, we avoid challenging conversations with our loved ones with intellectual disabilities. We may do this because the information seems scary, we don’t know if they will understand, or because we don’t know how to start the conversation. Talking about dementia is hard. It is scary to think about what will happen as dementia progresses. This fear makes it difficult to speak about with other people, especially adults with intellectual disability. This new guide by the National Task Group on Intellectual Disabilities and Dementia Practices, created with input from The Arc, walks you through how to tackle t his difficult part of aging with your loved ones. Download your guide!

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Chapter Benefits Spotlight: Keep Your Data Current!

Are you reading emails addressed to your predecessor? Are you a local or state executive director or state board president missing out on stimulating discussions in our Google Groups? Are Self-Advocates, family members and potential donors unable to connect with you because our Find a Chapter section https://www.thearc.org/find-a-chapter is out of date? Has your chapter changed its name? If your answer is “yes” that means our database eagerly awaits your updates! Please send any changes about your leadership team (name, email, telephone), offices (USPS address), social media account addresses (Website, Facebook, Twitter, etc.) or chapter name to membership@thearc.org.

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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.

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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

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

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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NCE at Convention!

 

Professional Development Seminar

 

Wednesday, November 7, 2018 | 1:00 p.m. – 5:00 p.m.

Join Dr. Arie Nettles and Dr. Donna Ford from Vanderbilt University as they discuss the importance of being a culturally responsive workplace and the impact it can have on our constituents. They will lead group discussion on racial disparities in services for people with I/DD, personal introspection on biases, and the impact on racial biases behavior. Come and network with other organizations as you continue your professional development.

In addition to the NCE Professional Development Seminar, NCE is bringing additional opportunities for you to bond and engage with your fellow chapter leaders, including a chapter leader reception and more:

NCE Awards Luncheon

The NCE Distinguished Professional Achievement Awards recognizes leaders across The Arc nationwide who demonstrate the skills, dedication and passion that has come to exemplify an executive at The Arc. The NCE Awards Luncheon celebrates those leaders who strive for excellence, put our clients first, and deliver great results. Join us to celebrate your colleagues and revel in the accomplishments of all of us who make The Arc great! The NCE Awards and Professional Development Seminar can be registered for when you complete your Convention registration. If you’ve already registered for Convention and would like to add on either event, please contact Robin Powers at robin@cmig.com.

The 2018 NCE Silent Auction is now Open!

As the premiere fundraiser for the National Conference of Executives, we have solicited an amazing collection of items from donors around the country! Are you interested in jewelry, fashion, travel, dining out, art, culture, sports, memorabilia, or something else? We have the perfect item for you!

It’s easy to get started:

  1. Click the link 2018 NCE Silent Auction  and bookmark it on your phone
  2. Register to be able to begin bidding
  3. Start bidding!
  4. Come back often to see recently added items and check on your favorites.

The Silent Auction closes on Friday, November 9, 10pm CST!

If you are coming to Nashville, TN for our National Convention, come by and visit the auction in person! The Gaylord Opryland Resort and Convention Center is our gracious host. Silent Auction hours at National Convention are:

  • Thursday, November 8, 12pm – 6pm
  • Friday, November 9, 12pm – 10pm