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.
Mission Moment
On January 3, NDSC welcomed Jordan Kough as our new Executive Director. Jordan has had a busy few weeks working with the Board of Directors and staff and meeting with other leaders in the community. Hear from Jordan in his first NDSC Mission Moment.
Looking Toward Lagniappe in the Big East
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.
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
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.
Mission Moment
With Executive Director David Tolleson
After 19 years of service, today marks my last day with the NDSC. What a privilege it has been to meet and work with so many of you over the years!
During my tenure as NDSC’s longest-serving Executive Director, I’m proud of many things. Our convention has grown to be the largest of its kind in the world. We have expanded our outreach to many previously underserved communities.
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.
Mission Moment
with NDSC Executive Director David Tolleson
October is wonderful for many reasons – the arrival of sweater weather, apple picking, and trick-or-treating. But one of the very best things about October is that it’s Down Syndrome Awareness Month! NDSC families led the successful effort to convince President Ronald Reagan to establish the yearly observance in 1984.
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.