Advocacy

Job Opening ~ Executive Director

JOB DESCRIPTION
(Full-time)

Overall responsibility:

The Executive Director is responsible for providing strategic leadership for the NDSC by working with the NDSC Board, its Executive Committee, and members of the NDSC Foundation to establish long-range goals, strategies, plans, and policies. The Executive Director is also responsible for overseeing the day-to-day operations of the organization, managing staff, and ensuring the organization’s financial sustainability.

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National Down Syndrome Congress The Scoop: The Big Six for Employing People with Disabilities

By Jeff Novorr, Vice President of Hospitality Services, University of Kansas Health System

Here’s the scoop… Walt Disney once famously said, “It all started with a Mouse.” For me, it all started with a scoop (of ice cream). You read that right – my exposure to disability employment began with a scoop – a Golden Scoop to be exact.  In 2021, after reading an article in the local media, I visited The Golden Scoop, a then-new, not-for-profit ice cream shop in Overland Park, Kansas. You see, they mostly employ people with disabilities, and according to the article I read, they were no longer accepting applications for employment because they had a waiting list for open positions. At the same time, amid the pandemic, my departments at The University of Kansas Health System were struggling with more than 100 open positions we could not fill. What was I missing? Turns out a lot. Click the video to hear the rest of my story.

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Policy & Advocacy Newsline ~ February 2022

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Advocacy Effort to Combat Discrimination in Coverage of Alzheimer’s Drugs

In January, the Centers for Medicare & Medicaid (CMS) released a draft proposal relating to a new class of treatments for Alzheimer’s disease.  This proposal stated that FDA-approved drugs in this class would be covered for people with Medicare only if they are enrolled in qualifying clinical trials. However, it specifically excluded from trials participation patients who have “any neurological or other medical condition (other than A.D.) that may significantly contribute to cognitive decline.” People with Down syndrome fall into this exclusion.

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Policy & Advocacy Newsline ~ January 2022

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A Brief Interview with NDSC’s New Executive Director, Jordan Kough

Jordan Kough Man standing at podiumWe are pleased to introduce the new NDSC Executive Director, Jordan Kough.  Jordan is an accomplished leader with a deep level of connection to, and affinity for, the broader disability community.  Since 2017, he has served as the Executive Director of the Disability Rights Legal Center (DRLC) in California, a non-profit, public interest advocacy organization that champions the civil rights of people with disabilities through education, advocacy, and litigation.

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Policy & Advocacy Newsline ~ December 2021

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Congratulations to the New OSEP Director

On Monday, December 13, Valerie C. Williams was sworn in as the Director of the Office of Special Education Programs (OSEP) in the U.S. Department of Education. In her new role, Valerie will be responsible for the effective implementation of the Individuals with Disabilities Education Act (IDEA), the federal special education law, advising the OSERS Assistant Secretary

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Policy & Advocacy Newsline ~ November 2021

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Update on Infrastructure and Reconciliation Bills

After months of negotiations, the U.S. House of Representatives passed the $550 billion Infrastructure Investment and Jobs Act, strengthening the nation’s infrastructure and making other improvements such as making public transportation more accessible and increasing access to broadband internet. This bipartisan bill, which passed the House by a vote of 228-206, had already been passed out of the U.S. Senate in August by a vote of 69-30, so no further action is needed by Congress. President Biden is expected to sign this bill into law today.

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Policy & Advocacy Newsline – October 2021

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National Disability Employment Awareness Month and Employment Legislation

NDEAM 2021

October is National Disability Employment Awareness Month (NDEAM), as designated by the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP). The goal of NDEAM is to commemorate the many and varied contributions of people with disabilities to American’s workplaces and economy. This year’s theme, “America’s Recovery: Powered by Inclusion,”  reflects the importance of ensuring that people with disabilities have full access to employment and community inclusion during our nation’s recovery from the COVID-19 pandemic.

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Policy & Advocacy Newsline ~ September 2021

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Update on the Build Back Better Reconciliation Bills

President Biden’s Build Back Better agenda contains many provisions designed to increase the inclusion of people with disabilities in every aspect of society. The plan includes expanding Medicare and Medicaid with unprecedented investments in Medicaid home and community-based services (HCBS).  It also calls for better pay and benefits for caregivers, increasing competitive integrated employment opportunities for disabled workers, and eliminating the payment of subminimum wage under Section 14(c) of the Fair Labor Standards Act.

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Policy & Advocacy Newsline ~ July 2021

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Convention Recap

Thank you to everyone who attended the 49th Annual NDSC Convention! The Policy Team was busy with our Annual Advocacy Training Boot Camp as well as two other workshop sessions:

What’s Happening in D.C. & What You Can Do, was presented by  Stephanie Smith Lee and  Ricki Sabia.  Stephanie Smith Lee, Debra Hart of Think College, Destination Dawgs graduate Marina Martinez and her Mother Zoila Martinez presented the session  Introduction to Inclusive Higher Education

The Advocacy Training Boot Camp had over 350 live participants from all over the country! Topics included: Untangling the Legislative Process, Engaging with Elected Officials, A One-Pager Demo, Mock Legislator Meeting, Social Media Tips, and more!

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Policy & Advocacy Newsline ~ June 2021

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Kick-off the NDSC Convention with the 4th Annual Advocacy Training Boot Camp
The NDSC 49th Annual Convention will kick off with the 4th NDSC Advocacy Training Boot Camp.  Whether you are a beginner, intermediate, or advanced in your advocacy journey, this three-hour boot camp will give you the tools you need to be an effective advocate. Designed to be an advocacy mini-course with a focus on legislative advocacy, participants will leave energized and with new tools for their advocacy toolbox.  The virtual NDSC Advocacy Training Boot Camp is included with all General Conference and Youth & Adults Conference registrations, with no additional registration or RSVP required.  The boot camp will feature 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.

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