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.
A Brief Interview with NDSC’s New Executive Director, Jordan Kough
We 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.
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
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.
National Disability Employment Awareness Month and Employment Legislation
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.
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.
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!
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.
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.
Increased COVID-19 Vaccine Access for People with Disabilities
On March 29, the Administration for Community Living (ACL) and the Centers for Disease Control (CDC) announced $100 million in state and local grants to facilitate access to COVID-19 vaccines for people with disabilities. This funding will be used to deal with the significant barriers to vaccination that people with disabilities are facing and will be used to provide assistance with scheduling vaccination appointments, direct support services to attend these appointments, education about the importance of receiving the vaccine, transportation to vaccination sites, and connecting people with disabilities to in-home vaccination options, and a national hotline. For vaccine resources relating to people with disabilities, see ACL’s COVID webpages as well as the Center for Dignity in Healthcare for People with Disabilities.