Policy & Advocacy Newsline ~ May 2021

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NDSC 4th Advocacy Training Boot Camp Included with NDSC Convention Registration

This NDSC 49th Annual Convention will again include the NDSC Advocacy Training Boot Camp.  This 3-hour session is designed to be an advocacy mini-course with a focus on legislative advocacy. Whether you are a beginner to advocacy or are an experienced advocate, you will walk away with something new and be energized after this session. The virtual 4th NDSC Advocacy Training Boot Camp is included with all General Conference and Youth & Adults Conference registrations with no additional registration or RSVP required. This training session will feature information from self-advocates who are making a difference through their personal advocacy efforts, sibling advocates, parent advocates, a State Representative, a State Senator, and the expert NDSC Policy & Advocacy Team.

Here’s a sneak peek at some of this year’s agenda highlights:

  • Spotlight: Engaging Diversity in the Down Syndrome Community – Tony Zandorfino, Dad, and advocate, Maryland
  • Spotlight: State Advocacy in a COVID World: Driving Advocacy through Science & Politics – Kari Jones, Sibling & President & CEO, Down Syndrome Association of Central Ohio
  • Engaging Elected Officials: Creating and Using Your One-Pager – Jessie Smart, Self-Advocate & NDSC Self-Advocate Council Member, Mississippi
  • Mock meeting & interview
  • Representative Michael Smith (R-DE) and Self-Advocate Lauren Devard, Delaware
  • Legislator pending and Self-Advocate, Noah Bradshaw, Delaware

This session, scheduled for Monday, June 21 at 6 PM EST, is appropriate for parents and other family members, professionals, and of course, self-advocates and is included in your NDSC Convention registration.


Mondays with Martha

Martha Haythorn is a 21-year-old self-advocate from Decatur, GA, who just completed an advocacy internship with the Arc of Georgia. One of the highlights of her internship was hosting “Mondays with Martha,” a vlog feature on the Arc of Georgia’s YouTube Channel. Through her vlog, Martha interviewed various people in the advocacy and public policy arena.  A favorite episode of many is the one when policy advocate Liz Weintraub joins Martha. During the episode, Martha and Liz chat about their disabilities and share what advocacy means to them. Martha will be a sophomore in the Georgia Tech Excel program in the Fall of 2021, where she hopes to find another advocacy internship.

Martha also serves on the NDSC Soiree of Stars Gala Host Committee and her passions include advocating for people with disabilities and theater.

The “Mondays with Martha” vlog will be highlighted during the social media segment of the NDSC Advocacy Training Boot Camp. Join us on Monday, June 21, from 6:00 – 9:00 PM EST, and meet Martha herself!

Watch the Martha and Liz episode

Advocacy in Action: The Rothholz Family

Mitch Rothholz, NDSC Board Member and NDAC member, has been a force in organizing and working at community COVID-19 vaccine clinics with Skippack Pharmacy in his Pennsylvania community. Mitch and his wife Julie, who are both pharmacists, and their son Evan, are also a legislative advocacy force. One weekend while volunteering at a COVID-19 vaccination clinic, Mitch and Julie had a special visitor – Representative Brian Fitzpatrick (R-PA), who was visiting the clinic to observe and learn.

Through their legislative advocacy, the Rothholz family has built a strong relationship with Rep. Fitzpatrick. Because of redistricting, Rep. Fitzpatrick no longer represents their home but does represent Evan’s school district, so they have been able to maintain their connection.  Mitch and Julie also have established a relationship with their current home Representative, Madeleine Dean (D-PA), who visited a clinic on March 28 and saw them in action. The Rothholz family would tell you that maintaining relationships with elected officials is central to effective advocacy.

Kudos to Mitch and Julie for their leadership, community service, and advocacy!

Rothholz and team vaccination clinic Back Left to right is Mayunk Amin, PharmD, Representative Brian Fitzpatrick (R-PA), Mitchel Rothholz, NDSC Board & NDAC Member, Julie Gerhart-Rothholz, Arc Alliance, Arc of PA board & NDAC member. Seated are volunteers Michele Keating-Sibel and Michelle Kelly.
Mitch Rothholz and Rep. Madeleine Dean (D-PA). Photo credits for the Madeleine Dean pics: BP Miller Photography
Mitch Rothholz and Rep. Madeleine Dean (D-PA).
Photo credits for the Madeleine Dean pics: BP Miller Photography

The American Families Plan

On April 28, President Biden announced the American Families Plan. This $1.8 trillion package would include investments in education, including universal preschool for three and four-year-olds through a partnership with states, two years of free community college, an increase in Pell grant amounts, and an increase in funding to Historically Black Colleges and Universities. It also includes paid family and medical leave and child care subsidies, and an extension of certain tax credits. The proposal would be paid for through increased taxes on high earners and an increase in capital gains tax.  For the proposal to become law, Congress would need to develop legislative language and need all 50 Democratic Senators to support the legislation. The main focus of negotiations in Congress at this time is the President’s previously announced American Jobs Plan.

American Families Plan Fact Sheet

On May 6, Ricki Sabia represented NDSC during a Zoom meeting with U.S. Department of Education officials. Also present on the call was the acting Assistant Secretary of the Office of Elementary and Secondary Education, Ian Rosenblum, who discussed survey results on learning opportunities (in-person, hybrid, and/or virtual instruction) broken down by race and ethnicity, as well as data on students with disabilities.  These surveys look at a sampling of schools across the country focusing on 4th and 8th grade. Data for each state and certain districts can be found by clicking below.

School Survey Data

Free Webinar on Inclusive Higher Education Program Accreditation Standards

Join NDSC Senior Policy Advisor, Stephanie Smith Lee, Debra Hart from Think College, and Martha Mock, Chair of the Think College National Coordinating Center Accreditation Workgroup, on June 3, 2021, from 2:00 PM -3:00 PM ET as they discuss  Where Are We Now: Program Accreditation Standards. Attend this session to find out about the soon-to-be-released Report to Congress, What are the standards for high-quality college programs that serve individuals with intellectual disability and their families, and how the final standards will improve quality and accountability.

For full details and to register

ally for advocacy campaign banner

The NDSC Policy & Advocacy Team is a top-notch group of experienced, well-connected,  highly regarded expert leaders in the national disability community.  Our team works tirelessly to not only advocate on your behalf in Washington, D.C. but to educate individuals with Down syndrome, their family members,  and other allies about legislative policy issues. We provide ongoing training and give advocates, novice and experienced,  tools, techniques, and information they need to engage with legislators to advocate for change effectively.

The ally for advocacy campaign highlights the work of the NDSC Policy team and gives those who recognize the value of our policy work the opportunity to show their support.  Through this monthly giving campaign, you can help us continue improving the lives of people with Down syndrome and enabling them to achieve their full potential. Your ongoing monthly contribution will support the NDSC Policy & Advocacy team to engage with policymakers on a bipartisan basis and to educate and empower stakeholders to speak up for policies that will improve the lives of individuals with Down syndrome and their families. Becoming an ally for advocacy is easy and your support will help us make an even more significant impact in the lives of those with Down syndrome.

Become an ally for advocacy today!