Policy & Advocacy Newsline ~ November 22, 2019

NDSC Hosts Policy Event in Washington, D.C. in Collaboration with American University Law School

On Monday, November 4, 2019, the NDSC Policy Team; comprised of Heather Sachs, Ricki Sabia, Stephanie Smith Lee, and Lauren Camp Gates in collaboration with American University Washington College of Law, hosted an event entitled “It’s Never Too Early to Prepare: A Discussion of Pathways to Workforce Readiness and Employment.” During this event, attended by nearly 100 people, there were two panel discussions about the laws and policies that successfully prepare students for the transition to competitive integrated employment from early school age through adulthood.

The panels, comprised of policy experts, as well as self-advocates, reviewed the current state of disability employment policy and proposed future changes. Panel 1 discussion, Educational Policies, was moderated by Professor Adrian Alvarez with Stephanie Smith Lee, Ricki Sabia, Madeleine Will serving as panelists.  Panel 2 discussion, Employment Policies, was moderated by Professor Robert Dinerstein, with Alison Barkoff, Heather Sachs, and Eli Lewis serving as the expert panelists. Self-advocates from around the county also participated in a poster session where they shared about their life and employment history. We want to thank Christopher Bennett, Lauren Devard, Megan Jones, Patrick Jones, Sophia Pineda, and Erin Thompson for their work on this project.

Recordings from the panels are being developed and will be distributed soon. Handouts and more information can be found on the Policy page of the NDSC website.

Thank you to our sponsors:
Landsman Law Firm, Michael Orleans (NFP), Down Syndrome Association of Delaware, Chesapeake Down Syndrome Parent Group, F.R.I.E.N.D.S., Down Syndrome Network of Montgomery County.  We would also like to send a special thanks to Mitch and Julie Rothholz, event Gold Level Sponsor.

11.2019 DC Event (1)     11.2019 DC Event (2)     11.2019 NDSC DC Event (3).


NDSC Policy Director Testifies at U.S. Commission on Civil Rights on Subminimum Wage

Briefing photoOn November 15, the U.S. Commission on Civil Rights (USCCR) held a public briefing on Submimumum Wages: Impacts on the Civil Rights of People with Disabilities. USCCR is evaluating whether Section 14(c) of the Fair Labor Standards Act violates the civil rights of people with disabilities. NDSC Policy Director, Heather Sachs testified before the U.S. Commission on Civil Rights about the issue of subminimum wage, where she expressed support for a phaseout of Section 14(c) along with the critical component of capacity-building for competitive integrated employment and improved wraparound services for people with disabilities. You can find Heather’s written testimony on the NDSC website or view her recorded testimony on YouTube (beginning at 30:37). You can also view a recording of the entire briefing on the USCCR YouTube Channel.

USSCR is accepting written comments from the public on this issue through December 15, 2019. Comments may be submitted by emailing subminimumwages@usccr.gov or by mailing correspondence to OCRE/Public Comments, U.S. Commission on Civil Rights, 1331 Pennsylvania Ave. NW, Suite 1150, Washington, DC 20425.

NDSC’s position statement on employment can be found under the Policy and Advocacy tab of the NDSC website.

Hill Briefing on Competitive Integrated Employment

CPSD 3On Monday, October 28, NDSC participated in a briefing on competitive integrated employment on Capitol Hill entitled “Successes of People with Disabilities Transitioning to Competitive Integrated Employment.” Co-hosted by the Collaboration to Promote Self-Determination (CPSD) and the National Council on Disability, the briefing featured stories of people who have successfully transitioned from sheltered workshops to CIE jobs. You can download the testimony of all briefing panelists as well as additional resources at the CPSD website.

Help Us Build Support for the Transformation to Competitive Employment Act

NDSC, along with many coalition partners, hosted a National Call-In Day on October 30, for the Transformation to Competitive Employment Act (TCEA) (H.R. 873/S.260).  Introduced in the Senate by Senators Bob Casey (D-PA) and Chris Van Hollen (D-MD) and in the House by Chairman Bobby Scott (D-VA) and Representative Cathy McMorris Rodgers (R-WA), this bipartisan legislation addresses barriers to employment and expands opportunities for competitive integrated employment for people with disabilities while phasing out subminimum wage certificates under Section 14(c) of the Fair Labor Standards Act over a six-year period. In addition, for those who choose not to work, work part-time, or for whom their disabilities make it too difficult to maintain work in a competitive integrated setting, the TCEA includes individualized wraparound services that provide them with opportunities for meaningful training and social activities in the community.

You don’t need to wait until a National Call-In Day to advocate for this bill. Please contact your Members of Congress TODAY through this NDSC Action Alert and ask them to cosponsor the Transformation to Competitive Employment Act. #RealWork4RealPay

ABLE Five-Year Anniversary

Nearly five years ago, in December 2014, the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act (Public Law 113-295) was signed into law. The ABLE Act amended the Internal Revenue Service Code of 1986 to create tax-free savings “ABLE” accounts for people with disabilities. ABLE accounts are financial tools that are designed to help individuals with disabilities to save for and pay for disability-related expenses (such as housing, transportation, personal support services, health care costs and more) without jeopardizing certain public benefits. Since 2014, over 50,000 individuals have opened ABLE accounts, allowing members of the disability community to save for health care, housing, education, and other needs.

NDSC advocated for the passage of the ABLE Act for nearly a decade and recently enjoyed celebrating this milestone at a recent Hill event. NDSC Policy Director, Heather Sachs, was honored to serve as master of ceremonies for this event, “Celebrating 5 Years of ABLE,” which was co-hosted by Senators Bob Casey (D-PA), Pat Roberts (R-KS), Jerry Moran (R-KS) and Chris Van Hollen (D-MD). Other Members of Congress who attended the event and gave remarks were Representative Cathy McMorris-Rodgers (R-WA), Senator Tammy Duckworth (D-IL), Senator Richard Burr (R-NC). NDSC Board Member Mitch Rothholz also gave remarks about his family’s advocacy for ABLE and the impact it has had on them.

Heather Sachs_ABLE         Mitch Rotholz_ABLE


Let’s Pass the ABLE Age Adjustment Act

As we celebrate ABLE’s anniversary, we are also striving to make ABLE better by passing the ABLE Age Adjustment Act (S. 651, H.R. 1814). This bill would raise the age of onset of disability from 26 to 46 for people with disabilities to have ABLE (Achieving a Better Life Experience) accounts. This change would enable six million more people with disabilities to become eligible to open an ABLE account. It would also greatly enhance the sustainability of all ABLE programs nationwide. Please use our Action Alert to call or email your U.S. Representatives and Senators and ask them to cosponsor this bill.

You’re Invited to Washington, D.C. this Spring for Advocacy Training & Day on the Hill

NDSC has partnered with The Arc, AUCD, AAIDD, NACDD, SABE, the Autism Society, and UCP to host the 2020 Disability Policy Seminar. The Disability Policy Seminar, which will be held March 23 – 25, 2020, features two days of informative sessions led by policy experts and offers opportunities for participants to discuss key issues with others from their same state. On the third day, attendees will attend a breakfast on Capitol Hill with Members of Congress, then meet with their elected officials to speak about the high-priority issues that affect them most. Registration will open in early December. For more information, please visit the Disability Policy Seminar website.

TIES Center Update

Ricki Sabia, NDSC’s Senior Education Policy Advisor, continues to work with the federally funded TIES Center on Inclusive Practices and Policies, which is focused on students with significant cognitive disabilities. TIES is providing intensive technical assistance to two states. Maryland was selected last year and Washington was recently selected. An article discussing the selection of Washington as an intensive technical assistance state has been published. In the future, other states will be able to apply for targeted technical assistance to address specific needs. NDSC will share this information as it becomes available.

Ricki’s focus is primarily on the universal technical assistance component of the project, which is aimed at parents, educators, administrators, and others across the country. This component involves the development of publications and other means of sharing best practices and information so that the work in the intensive and targeted technical assistance states can be scaled up everywhere. So far Ricki has co-authored two publications, called “briefs.” Brief #1 is titled Ten Reasons to Support Inclusive School Communities for All StudentsBrief #2 is titled An Alternate Assessment Does NOT Mean a Separate Setting.  Each brief may be downloaded by clicking the links above.

Ricki is also in the process of co-authoring another brief, as well as providing input on other universal technical assistance materials. You can explore all the TIES resources including “TIPS” for educators by visiting the TIES website. Three years remain in this project, so check back often as many more resources will be posted in the future.

NDSC Signs Letter to U.S. Department of Education on the Civil Rights Data Collection

The U.S. Department of Education released proposed changes to the Civil Rights Data Collection (CRDC) and requested public comment. NDSC is a member of a broad coalition of disability and other civil rights groups called The Leadership Conference on Civil and Human Rights (LCCHR). We signed on to LCCHR’s letter providing comments about the proposed changes.  As the letter points out, the  CRDC reports data by disability status, disability type, race, ethnicity, native language, socioeconomic status, English learner (EL) status, and sex (including sexual orientation and gender identity), which helps us to learn about students’ experiences in schools and whether all students have equal access to education.


SOTA Banner Winners

The State of the Art Conference on Postsecondary Education and Students with Intellectual Disability was held in Reno, Nevada on October 13 and 14. The conference was attended by about 400 students, families, and professionals. NDSC Senior Policy Advisor, Stephanie Smith Lee, was awarded the George Jesien National Leadership award for her long-standing successful advocacy for postsecondary opportunities for students with ID. The award presentation and Stephanie’s remarks may be viewed on the NDSC Policy Facebook video watch page. NDAC Member, Rachel Mast, received the Laura Lee Self-Advocate Leadership Award, named for Stephanie’s daughter.


Jawanda’s Trip to Washington DC: Relationships Matter
Written by Jawanda Mast

Jawanda Mast visitI’ve led many advocacy trainings and I always emphasize the importance of building relationships with your elected officials and their staff.  I communicate with the local and Hill offices on a regular basis. I met with my new Representative Sharice Davids (D-KS) a couple of times earlier in the year. More importantly, my daughter Rachel has met with her. Still, I had not met my new Representative’s DC staff, and there had been turnover in some of the other offices. Since I hadn’t been to Washington DC in two years, I decided it was time to put my own words to action to make new contacts and strengthen existing relationships. Sometimes, you just can’t duplicate a face-to-face interaction. In late October, I took a trip to Washington DC for some relationship-building. I wasn’t there to go to the Hill with a group, but that is a good idea, too. As I have done for most of my trips to DC these past 10 years, our family funded the trip. A generous friend let me stay with her so that helped.  It was fun to catch up with friends I’ve not seen in a while, but my purpose was to engage with staff in the Kansas Delegation’s legislative offices.

I emailed about six weeks beforehand and set up meetings for the days I would be in town. I followed up a few days before to make sure we were still set to meet. I invited NDSC Policy Director Heather Sachs to join me. I also worked with Rachel who wrote a letter to each of them that I could hand deliver to their offices. They would all be more interested in Rachel than in talking to me!  Rachel’s letter included a request for them to sponsor a bill with a little background and why it was important to her.

While I was there, we were able to meet in person with both of my Senators, Jerry Moran (R-KS) and Pat Roberts (R-KS).  We also met with staffers. We thanked them for their support and recent leadership on the ABLE Age Adjustment (S. 651/H.R. 1814) legislation. We invited them to the ABLE Five-Year Celebration.  We talked in depth about the Transformation to Competitive Employment Act (S.260/H.R. 873). Staffers had very good questions, and we have been working since to answer those questions. We shared Rachel’s letter and told them that she said she knew they missed seeing her. Everyone laughed.

We met with Rep. Davids’ staff, and since I had not met any of her DC staff this was very important. She was called into a committee meeting and despite all their best efforts to accommodate my schedule, we didn’t get to meet her in person. However, we had an exceptionally good meeting with her staff. We asked the staff to extend our thanks to Rep. Davids for sponsoring the Transformation to Competitive Employment Act. She is not yet a cosponsor on the ABLE Age Adjustment Act, so we gave her staffer a little front-line history!  We have since exchanged a few emails for some more details, and her staff just informed me that Rep. Davids has signed on as a cosponsor!

Eight years ago, my family and I first visited Representative Kevin Yoder’s DC office and met many of his staffers. Though he is no longer in office, his staff has disbursed to other places. We have stayed connected with most of them, many through social media. The young man who answered my phone calls when I first called the Congressman’s office those eight years ago is now Chief of Staff for Kansas 1st District Congressman Dr. Roger Marshall (R-KS).  I dropped him an Instagram message and said I was in town. He said come on by. While we were meeting with my friend, reminiscing about the good old days and filling him in on both the Transformation to Competitive Employment Act and ABLE Age Adjustment Act, Dr. Marshall popped in the office. He gave us five minutes of undivided attention. He had a few questions. We thanked him for his time, and he left. The Chief of Staff committed to sponsoring the ABLE Act and a few hours later sent me a copy of the email asking to join as a cosponsor. Dr. Marshall caught us before we left. He had a baseball card he wanted me to give to Rachel-  he remembered her visit a few years back. We grabbed a picture with him, thanked my friend and went on our way.

You may be wondering, “Why is she sharing all of this?”  There are many lessons on effective advocacy in this little story.

Your voice matters. Elected officials want and need to meet their constituents.

Be gracious and say thank you publicly (social media) and privately.

Staffers are important for many reasons. Remember to let them know that you appreciate them.

Be prepared. Always take a leave behind. Always make an “ask.” Rachel’s letter contained the main asks and, in her words, why the ask was important. For example, her letter to our Senators said:

“Would you please be a sponsor for the Transformation to Competitive Employment Act (S. 260) bill? It helps people like me have jobs where we get paid like everyone else. I love working with my friends at the Olive Garden and seeing people I know.”

If you need help with the leave behind or asks, contact the NDSC Policy Center or reach out in the #321Advocate Facebook group.

Follow up with staff with any requested information and be persistent in requesting support for a policy.

Go meet the home office staff. It’s easier to get to home offices so take advantage of proximity.

Build relationships with both the local and DC offices.  Ask about their families. Send a holiday card. Invite them to your organization’s holiday party or other type event.

ALWAYS be respectful even when you are angry or disagree with a position. We can agree to disagree respectfully and that goes a long way. Being disrespectful burns bridges.

Advocacy is about relationships. Elected officials come and go, and their staffers often move into other offices, return to the district for a related job, possibly run for office. Relationships continue. They are the key to effective advocacy. Jawanda and Heather

Jawanda Mast is a longtime advocate and is the NDSC Advocacy Training Boot Camp Coordinator. She is also the Founder of the advocacy-focused Facebook group #321Advocate and writes the blog, The Sassy Southern Gal.