The NDSC Policy & Advocacy Team is comprised of disability policy professionals who are experienced, well-connected, and highly regarded national subject matter policy experts and leaders. The Policy Team regularly consults with the engaged, experienced, and bipartisan NDSC Public Policy Advisory Council that represents a diversity of viewpoints and experiences. Recently, NDSC coalesced its large network of volunteer advocates across the country into the National Down Syndrome Advocacy Coalition (NDAC), a grassroots advocacy service that is designed to educate individuals with Down syndrome, their family members and other allies about policy issues and give them the advocacy tools, techniques and information they need to effectively engage with their legislators to advocate for change.
NDSC recognizes the value of joining our advocacy efforts with other disability and human rights groups in both informal and formal partnerships. Currently NDSC participates in the following coalitions: Consortium for Citizens with Disabilities, Collaboration to Promote Self-Determination, National UDL Task Force, UDL Policy Council, ABLE National Resource Center and the Leadership Conference on Civil and Human Rights.
Policy Focus Areas
The NDSC Policy Team possesses significant subject matter expertise on K-12 and postsecondary education-related laws and policies. On education-related topics, NDSC is regularly consulted by Senior Hill staff, administrative agency staff, and other disability organizations. We work regularly with our coalition partners to implement our mutual policy priorities and vision.
Every Student Succeeds Act (ESSA)
Goal: Retain critically important ESSA accountability.
NDSC works to retain critically important regulations and guidance and discourage waivers of the law.
Goal: Improve ESSA implementation through tools and technical assistance for stakeholders.
In states where there is a strong education advocacy presence, NDSC strives to keep these advocates informed about key ESSA issues in their state, as the issues come to our attention. NDSC also develops advocacy tools and information for use by stakeholders in any state.
Individuals with Disabilities Education Act (IDEA)
Goal: Retain IDEA protections.
NDSC works to retain current critically important regulations and guidance and develops reauthorization recommendations (but we are not encouraging reauthorization at this point).
Goal: Increase inclusive opportunities for students with Down syndrome and other cognitive disabilities.
NDSC participates as a liaison with the National Center on Inclusive Practices and Policies, which is focused on students with significant cognitive disabilities. We also have been promoting Dan Habib’s film “Intelligent Lives” for policy purposes and to increase expectations for students with intellectual disabilities.
Universal Design for Learning (UDL)
Goal: Retain and improve positive language about UDL in the Higher Education Act (HEA).
NDSC takes the lead with the National UDL Task Force on HEA recommendations.
Goal: Increase implementation of UDL in districts and schools.
NDSC works to increase constituent knowledge and understanding of UDL and its impact on education activities. We also take the lead with UDL Policy Council to encourage states and districts to implement UDL as part of their ESSA plans and to develop and promote UDL credentialing for education personnel and certification of education technology products and education entities (e.g. school districts, schools).
Expanding Inclusive Postsecondary Education (PSE)
Goal: Retain and improve provisions in the Higher Education Act (HEA) that allow financial aid and authorize model programs and a national coordinating center for students with ID.
NDSC takes the lead in this advocacy effort through the role of Co-chair of the Committee to Promote Inclusive Higher for Students with Intellectual Disabilities (ID). We work closely with other national organizations and are in continuous contact with Congressional staff and U.S. Department of Education high-level officials, and utilize grassroots advocacy, to encourage Congress to reauthorize and improve the ID provisions in the final Higher Education Act reauthorization bill.
Goal: Increase access to inclusive postsecondary opportunities for students with Down syndrome and other intellectual disabilities.
NDSC regularly communicates with high-level U.S. Department of Education (ED) and Capitol Hill staff to advocate for improvements to current ED guidelines that restrict the use of vocational rehabilitation and IDEA funds for students with ID in postsecondary programs. Additionally, we provide technical assistance and training to parents, program staff and others on postsecondary options, access, and funding.
Goal: Increase the quality of Postsecondary Education Programs through model standards.
As Chair of the National Coordinating Center Accreditation Workgroup, NDSC works to include policies and practices beneficial to students with Down syndrome and their families in the development and use of model accreditation standards for Postsecondary Education programs.
NDSC recognizes that most people with Down syndrome currently do – or will in the future — rely upon Medicaid for their health care, employment and access to community life. In addition to covering medical care, state Medicaid programs cover a wide range of services and supports for people with disabilities. The potential loss of these services through funding cuts and restructuring will be devastating to the Down syndrome community. NDSC actively works in collaboration with the Consortium for Citizens with Disabilities, the Collaboration to Promote Self-Determination and other groups to protect Medicaid.
Medicaid: Long Term Services and Supports, Employment Supports
Goal: Maintain current infrastructure framework of Medicaid and protect against cuts, block granting, and per capita caps.
Goal: Maintain long term services funded by Medicaid, particularly Home and Community Based Services (HCBS) waivers that fund employment and residential supports. (The primary source of long-term employment support is Medicaid.)
Goal: Increase public awareness of the importance of Home and Community Based Services and utilizing self-directed services with necessary safeguards.
With needed supports and services, primarily provided through Medicaid, people with disabilities have shown they can successfully work in jobs alongside their peers without disabilities. NDSC is committed to advancing policies that have been shown to help people work. This includes increasing access to supported employment services funded through Medicaid, providing job training, increasing opportunities for apprenticeship and work-based learning experiences in higher education, and addressing transportation barriers. Serving in a leadership role as Vice President of the Collaboration to Promote Self-Determination, NDSC works collaboratively with other disability groups on employment issues for people with disabilities.
Goal: Retain Workforce Innovation Opportunity Act law, especially the definition of “competitive integrated employment” and the rule not allowing schools to contract with sheltered workshops.
Goal: Expand opportunities regarding apprenticeships as a pathway to employment for people with disabilities.
The NDSC Policy & Advocacy Team also works closely with our coalition partners on the following priorities.
Goal: Improved transition services, including opportunities for paid work and college access, while still eligible for IDEA services (typically ages 18 through 21).
Goal: Preserve key tenets of the Affordable Care Act that eliminate denial in coverage or charge higher rates based upon pre-existing conditions, prohibit annual and lifetime caps, and cover essential health benefits such as rehabilitative and habilitative services.
Goal: Increase the availability of ABLE accounts. Monitor legislative developments with the ABLE Act and influence the development of ABLE-related regulatory guidance.
Health Care State Bills
Goal: Monitor state bills relating to Down syndrome information, termination based on Down syndrome, and nondiscrimination in organ transplantation.
Goal: Increase supply of affordable, accessible housing, and eliminate housing discrimination.
Goal: Expanded funding for Down syndrome research and scientific study to improve the quality of life of people with Down syndrome and enable them to achieve their full potential.
Goal: Increase supply of affordable, reliable transportation, and eliminate discrimination in transportation.