An advocate wearing a "disability rights are human rights" t shirt poses with past Wisconsin governor Scott Walker

The Arc Responds to Passage of Criminal Justice Reform by Congress

/in /by The Arc

Washington, DC – Last week, both chambers of Congress passed a bill focusing on criminal justice reform, which President Trump signed into law. The legislation shortens sentences and supports job training and other programs for some prisoners with disabilities.

“We are pleased that Congress has chosen to begin comprehensive reform of our criminal justice system. While this is a step in the right direction, our hope is that future legislation provides support for individuals with intellectual and developmental disabilities (IDD) involved in all phases of our criminal justice system, whether as victims, witnesses, suspects, defendants, or prisoners.

“This legislation funds training on de-escalation techniques for federal prison staff; this is particularly important for individuals with IDD who are incarcerated. It is essential that future legislation supports training for law enforcement through all branches of government on recognizing and supporting the needs of individuals with disabilities. This training can ensure that an individual’s rights aren’t compromised and that they are provided the appropriate accommodations ensuring they are treated justly and don’t experience conditions that can be detrimental to their physical or mental health.

“The bipartisan support of this legislation is heartening, and we are grateful to Members of Congress for their work on this important issue. The Arc plans to be at the table as further criminal justice reform is discussed in the 116th Congress to ensure the interests of people with disabilities are included in future legislation,” said Peter V. Berns, CEO of The Arc.

While people with IDD comprise 2 to 3% of the general population, they represent 4 to 10% of the prison population. Earlier this year, The Arc’s Criminal Justice Advisory Panel was launched. The panel is the latest addition to the organization’s National Center on Criminal Justice and Disability’s® (NCCJD) ongoing advocacy to protect the rights of people with IDD involved in the criminal justice system.

Established in 2013, NCCJD is the only national center of its kind serving as a bridge between the IDD and criminal justice communities that focuses on both victim and suspect/defendant/prisoner issues. The Center provides training and technical assistance; resources for professionals, people with disabilities, and their supporters; as well as educates the public about the intersection of criminal justice reform and the advancement of disability rights. Pathways to Justice®, NCCJD’s signature training tool, is a comprehensive, community-based program facilitated through chapters of The Arc that helps criminal justice professionals understand their legal obligations toward people with disabilities. NCCJD is building the capacity of the criminal justice system to respond appropriately to gaps in existing services for people with disabilities, focusing on people with IDD, who often remain a hidden population within the criminal justice system, with little or no access to advocacy supports or services.

Two event attendees stand smiling with their arms around each other's shoulders.

The Arc Responds to Texas U.S. District Court Judge’s Ruling on the Affordable Care Act

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The Arc Responds to Texas U.S. District Court Judge’s ruling that the Affordable Care Act is unconstitutional:

“This ruling by District Court Judge Reed O’Connor in Texas v. Azar is of great concern. To strike down the entirety of the Affordable Care Act (ACA) puts the health of millions at risk, but we know that this case will be appealed. While the ruling does not impact the law immediately, it has raised concerns and fears for millions who have benefited from the ACA. The ACA includes historic health care coverage expansions, nondiscrimination and health insurance reforms, numerous enhancements to Medicare, Medicaid, and other provisions that benefit people with disabilities. The fact remains that the ACA is the law of the land and health care coverage will not be impacted by this decision without further court appeals and decisions. We must also remember that the Supreme Court has upheld the constitutionality of the Affordable Care Act twice.

“This is about people’s lives – their health, independence, financial stability, and so much more. The Arc remains steadfast in our commitment to advocate for and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Marty Ford, Senior Executive Officer for Public Policy for The Arc.

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The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices

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Today, The Arc released the following statement in response to the Food and Drug Administration’s (FDA) announcement that it intends to ban the use of an electric shock device called Gradual Electronic Decelerator or GED. These devices are used with residents of the Judge Rotenberg Center (JRC), an institution in Massachusetts for children and adults with intellectual and developmental disabilities (IDD) and mental health issues. The devices are worn by residents of JRC; staff members use remote controls to administer a shock to the resident wearing the device with the intent of changing the individual’s behavior. Substantial evidence exists in the FDA’s records that this practice is painful and traumatizing to the individuals who have been shocked. Organizations help people with addiction start over.

“There is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. The actions of the JRC remain a civil rights issue. While we are glad that the FDA has shared its intent to ban use of these electric shock devices, we urge the agency to finalize this rule as soon as possible.

“With every day that passes without this rule being finalized, the rights of people with disabilities and mental health issues will continue be violated as they endure painful abuse. The Arc won’t rest until this barbaric practice is halted and use of these devices is banned at the JRC and nationwide. We remain a resource to FDA and other administration officials as they work through implementing this ban,” said Peter Berns, CEO of The Arc.

The Arc has a long history of opposition to the use of aversive procedures, such as electric shock, deprivation, seclusion, restraint, and isolation on people with IDD and other disabilities. For many years now, The Arc has joined other organizations raising concerns about the health, safety, and welfare of residents of the JRC, including commenting on the rule that The Arc is now requesting the FDA to finalize.

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December 2018 #HandsOff: Taking My Advocacy to Tennessee!

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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.

This year The Arc was excited to be able to offer a limited number of scholarships to individuals with disabilities to attend the National Convention in Nashville, Tennessee One of the scholarship winners, Ivanova Smith from Washington, shares her experience below.

By: Ivanova Smith

Ivanova Smith takes a selfie and smiles with her husband and child to her right. On November 7th, I got to go to Tennessee for the first time for The Arc’s National Convention! It was a blast. When I found I won the scholarship, my husband and I saved up so he and my daughter got to come with me and see the sights.

While they were out having fun in the giant Gaylord hotel, I was gaining tons of knowledge and networking at the Conference! One of the first things I got to do was participate in the National Council of Self-Advocates Symposium. It was great getting to hear from other professionals and leaders with disabilities speak on topics such as transportation, housing, and how to be effective in advocacy around public transportation. I even got to speak during an open mic session!

I enjoyed the workshops around people who help women with disabilities who were victims of sexual assault. I also really enjoyed the general session where they spoke about legislative priorities and I got to meet new friends!

I support The Arc’s national efforts in wanting to improve education and promoting self-determination! Friday we got to celebrate awardees who worked on efforts on better inclusion at the Catalyst Awards. One of them is actually my Facebook friend, James Meadours. His speech inspired me to keep advocating in my home state of Washington. On the last day, we got to enjoy Nashville and listen to live music! It was a wonderful time!

Want to learn more about The Arc’s 2018 Convention? Check out pictures here.

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The Arc Responds to Final Passage of Farm Bill

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Washington, DC – The Arc released the following statement following final passage of the 2018 Agriculture and Nutrition Act:

“We applaud the Senate and House of Representatives for their bipartisan work on the Farm Bill (H.R. 2), passed this week in the Senate by a vote of 87-13 and in the House by a vote of 369-47. We are pleased that the version of the bill that was passed rejects cuts to the Supplemental Nutrition Assistance Program, known as SNAP, which more than 11 million people with disabilities across the United States rely on to help them eat. Once signed into law, this bill will preserve access to basic food assistance for people across the country, including those with disabilities who rely on SNAP to put food on the table. We urge President Trump to sign this bill into law as soon as possible,” said Marty Ford, Senior Executive Office of Public Policy, The Arc.

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Welcome the New NCE Steering Committee Members

/in /by The Arc

In 2019, the NCE Steering Committee will welcome new leadership and new members. The steering committee serves as NCE’s governing body and is responsible for supporting the development and implementation of a robust professional development program for executives, management staff, and volunteer leaders in The Arc. Please join us in thanking Carrie Hobbs Guiden and the 2017-2018 committee for their time, energy, creativity, and commitment — and please welcome your 2019-2020 committee members:

Chairperson: Karen Shoemaker, Executive Director, The Arc of Lehigh and Northampton Counties, PA

First Vice-Chair: Chris Stewart, President/Chief Executive Officer, The Arc of Central Alabama, AL

Second Vice-Chair: Kim Dodson, Executive Director, The Arc of Indiana, IN

Immediate Past Chair: Carrie Hobbs Guiden, Executive Director, The Arc of Tennessee, TN

Regional Representatives

Region 1: John Nash, Executive Director, The Arc of North Carolina, NC

Region 2: Jean Phelps, Chief Executive Officer, LifeLinks/The Arc of Greater Lowell, MA

Region 3: Lori Opiela, Vice President for Day and Employment Services, United Cerebral Palsy Seguin of Greater Chicago, IL

Region 4: Kevin Fish, Executive Director, The Arc of Sedgwick County, KS

Region 5: Robert Malone, Executive Director, The Arc of Prince George’s County, MD

Region 6: Jon Meyers, State Director, The Arc of Arizona, AZ

At Large Members

Frank Adu, Chief Executive Officer, The Arc Middlesex County, NJ

Leslie Green, Chief Executive Officer, Stonebelt Arc, IN

Teri Hawthorne, Executive Director, The Arc of Greater Beaumont, TX

Mark Keeley, President and CEO, St. Louis Arc, MO

Charity Moore, Executive Director, The Arc of Laramie County, WY

Stanfort Perry, Executive Director, AHRC Nassau County, NY

Melanie Soto, Executive Director, Y.E.S. The Arc, AZ

Mary Van Haneghan, Chief Executive Officer, The Arc of the Capital Area, TX

Regional Key

Region 1: AL, FL, GA, MS, NC, SC

Region 2: CT, MA, ME, NH, NY, RI, VT

Region 3: IA, IL, IN, MI, MN, WI

Region 4: AR, KS, KY, LA, MO, ND, NE, OK, SD, TN, TX, WY

Region 5: DC, DE, MD, NJ, OH, PA, VA, WV

Region 6: AK, AZ, CA, CO, HI, ID, NM, MT, OR, UT, WA

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Spotlight: Farewell to NCE Steering Chair Carrie Hobbs Guiden

/in /by The Arc

After two wonderful years, we bid farewell to Carrie Hobbs Guiden as our NCE Steering Committee Chair. Carrie reflected on her tenure as chair with us, as well as how to get more involved with NCE and take advantage of all that it has to offer!

Your time as NCE steering committee chair is coming to a close after 2 years! What’s your most memorable moment (funny, ridiculous, triumphant, or otherwise) from your time as chair?

The two years have gone by so quickly that it is hard to pick out just one particular moment. I think my most memorable moment as NCE steering committee chair has been handing out the awards at the NCE Awards Luncheon both in San Diego and Nashville. It was such a privilege to meet and honor the amazing leaders in our network and hear their stories. And while this isn’t a specific “moment,” per se, I’ve really cherished the time I’ve spent working with the two Vice Chairs – Karen Shoemaker and Chris Stewart. We’re not only close professionally, but personally as well. We have supported each other through some challenging personal situations that helped us really become a cohesive team.

What was your most challenging moment?

For me the most challenging moment was making the call to tell two steering committee members that they would be rolling off. There is this internal struggle between not wanting to lose that contribution from members that have been extremely passionate, involved and committed but also knowing that the only way to bring new people onto the committee is to allow for that changeover. Change is always difficult for me anyway, but I have found as I get older I can deal with it more effectively.

Do you have any advice for those wanting to get more involved with NCE, either in a leadership or participatory capacity?

Just do it! NCE has many different task groups – events planning, silent auction, awards, chapter resources – that provide opportunities for anyone interested in becoming more involved in NCE to do so without an extensive time commitment. These task groups also give you the opportunity to decide if you want to get more involved and serve on the NCE steering committee. My initial involvement came as an invite to be on what used to be the NCE Membership Committee. For me, being involved in NCE at any level has been a great way to get more connected to the professionals in The Arc network. It is easy to get caught up in the day-to-day that happens in your own state and forget that we have a national network of leaders from which to seek information, learn new ideas, and get support. When I reach out to others in NCE, I often find that they are dealing with similar issues, but in different ways. So I can get a lot of creative ideas from others that I wouldn’t necessarily come across if I didn’t look outside my own state.

What’s next in your career?

I’m not sure. I really enjoy my role as a state chapter exec – but there is always part of me that considers returning to my roots as a provider. I can say with certainty that I always see myself connected to The Arc in some way and working with people with IDD and their families. I just cannot imagine doing anything else. And as long as I am connected to The Arc and people with IDD, I will remain involved in NCE.

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The Arc Mourns Passing of President George H.W. Bush

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The Arc released the following statement following the death of President George H.W. Bush.

“President Bush and members of his administration were crucial participants in the development and enactment of the Americans with Disabilities Act, one of the greatest legislative victories for people with disabilities in our nation. This landmark law is one of the ways in which our country leads the world in respecting and valuing the lives of people with disabilities. We salute the important impact that President Bush’s commitment to civil rights will continue to make in the lives of people with disabilities for many generations to come,” said Peter V. Berns, CEO of The Arc.

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Thankful for SNAP: November 2018 #HandsOff

/in , /by The Arc

#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.

By Anne Clinard Barnhill

My sister, Rebecca, is sixty years old and one of the most amazing and resilient women I have ever met. When she was born in 1958, autism was barely whispered among doctors. The general public knew nothing about the condition. Becky wasn’t officially diagnosed with autism until she was thirty-seven years old.

She is living life as fully as possible. She shops, goes to the Senior Center for exercise two or three times a week, goes to Weight Watchers, and continues to hone her independent living skills. Several years ago, she participated in a program called Beyond Academics at the University of North Carolina. Innovative and person-centered, this four-year program allowed Becky to attend classes on campus, just like traditional college students — only she studied self-care, cooking, budgeting, and other independent living skills.

After graduation, she made the choice to live independently with a roommate. They split the rent and utilities, but food is purchased on an individual basis. Becky blossomed in the independent living situation. She made friends and learned her way around Wilmington. She cannot yet use public transportation, but that is one of her goals. She has procured a part-time seasonal job, which she loves. She works one afternoon per week from Memorial Day through Labor Day.

One thing that makes this life possible for her is the Supplemental Nutrition Assistance Program (SNAP). Millions of people with disabilities, like Becky, rely on SNAP to access the food they need. Last week, SNAP helped Becky prepare for Thanksgiving as she was able to gather the ingredients she needed to prepare a tasty meal, with help from family and friends. Support from SNAP helps her to purchase to healthier foods like fresh fruits and vegetables. As a breast cancer survivor, she needs to eat a lot of fresh food to help keep a recurrence from happening. She makes wise choices with her SNAP food monies and this helps keep her healthy. If SNAP were taken away, she would be forced to purchase cheap processed foods and would rarely afford fresh produce.

SNAP enables Becky to continue living independently. She is happier, healthier, and SNAP helps make it all possible. I beg Congress to protect the SNAP program.

Becky has the courage of a lion and the heart of tiger. She has braved many situations with dignity and such gumption. She needs a little help from her friends — don’t we all? SNAP is her friend and I pray she continues to receive this, as without SNAP, her whole life — the life she has built brick by brick — will be at risk of tumbling down.

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Celebrating National Caregiver Month With The Arc Wisconsin

/in /by The Arc

The Arc Wisconsin State Director Lisa Pugh stands in front of an exhibiting booth smiling and holding a computer. Each November, we observe National Caregiver Month – honoring those who devote their lives to providing care for individuals with intellectual and developmental disabilities.

The daily demands of caregiving for individuals with IDD and elderly adults can be challenging, and the commitment of time and resources that goes into ensuring a loved one’s well-being leaves little time for personal goals, professional duties and planning for the future.

At The Arc Wisconsin, Lisa Pugh is working hard to take a leadership role in the fight to support caregivers throughout the state.  

One of the largest groups that make up the caregiving population are family members and loved ones. What is future planning and why is it important?

Future planning is creating a guide for a person with IDD to lead a good life as independently as possible. A plan is important throughout all stages of life, especially during transitions, and especially in the future after the parent or caregiver is no longer able to provide support.

About 2/3 of the more than 50,000 people with IDD in Wisconsin live with their families, and there are 16,500 vacant paid caregiver positions. In many of these families, the main caregivers are over age 60. When it comes to thinking about the future, Wisconsin families are like everyone else across the country- they don’t have a plan in place, even though they know they should.

Without a plan in place, those families can easily go into crisis. Many families feel overwhelmed, aren’t even aware of future planning options and resources, and need support to navigate the process.

Many families think future planning is mostly about finances – but good future planning is about so much more. It is about daily routines and future plans about where to live and work. It’s about growing people’s independence in their own decision-making. It really is a holistic look at someone’s life and how to secure and plan for their success and happiness.

What are you doing to meet this need?

We are working hard to expand access to future planning information. Trained planners help Wisconsin families work through common and difficult barriers. Since January 2018 we have trained 25 professionals who have supported more than 123 caregivers and families to begin development of a future plan. The Arc Wisconsin’s network of trained planners reached over 33 towns and cities.

We are also conducting outreach to identify systems barriers, advancing recommendations from a recent respite summit, and offering future planning workshops across the state.

You can learn more about our future planning efforts by watching this short video.

You were recently appointed co-chair of the Wisconsin Family and Caregiver Support Alliance. How can other chapters and organizations utilize coalition cooperation to better serve caregivers?

Caregiving as an issue that many populations are struggling with and many people are affected by. In our state, The Arc Wisconsin has chosen to work alongside aging and dementia advocacy groups to find solutions to support families. Our Alliance is tackling challenges in workgroups to address commonalities like lack of respite care, the need for caregiver support, complicated systems navigation, cultural competence and the need for employers to better support their caregiver employees. We are having success on all of these fronts by working together. In 2019, we plan to publish results of several surveys that we hope will lead to policy changes and perhaps redirected or new funding.

We will kick off this year’s Family Caregiver Month celebration with an Alliance press conference in the Governor’s Conference Room of our state capitol with storytelling by caregivers and presentation of a Governor’s proclamation.

What advice do you have for other chapters looking to expand their efforts in supporting caregivers?

Getting out and talking directly to caregivers has brought credibility to our efforts. Over the last year, The Arc Wisconsin has presented on future planning to groups of caregivers and professionals at Aging and Disability Resource Centers and at other events and conferences throughout the state. We have put on webinars, provided in-service training, and are widely distributing The Arc’s excellent future planning resources. Often communities are just starting to become aware of the fragile situations where elderly moms and dads have an adult son or daughter with IDD living at home while they continue providing most or all of the care. Future planning is essential in these situations and chapters of The Arc are poised to lead the way in tackling it.