We urged Congress to pass the following bills: Keeping All Students Safe Act (H.R.3470/S.1750),
RISE Act (H.R. 2401/S.1071), IDEA Full Funding Act (S. 2217), The Preparing and Retaining All (H.R.4550).
Lobbied for increase funding for the Individual with Disabilities Education Act and the Transition and Postsecondary Programs for Students with Intellectual Disabilities.
We urged Congress to pass the H.R.3380 - HEADs UP Act of 2023 which would authorize the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.
Advocated and lobbied for the Down Syndrome Diagnosis Act.
Urged Congress to pass Recognizing the Role of Direct Support Professionals Act (S.1332/H.R.2941) which would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.
SSI Savings Penalty Elimination Act, HCBS Relief Act, Eliminating Marriage Penalty in SSI Act (EMPSA)
Urged Congress to pass the Transformation to Competitive Integrated Employment Act (S.533/H.R. 1263) which would phase out the use of subminimum certificates for people with disabilities. We also sent recommendations to the House and Senate for a reauthorization of the Workforce Innovation and Opportunity Act.
We urge Congress to pass the SSI Savings Penalty Elimination Act (H.R. 5408/S.2767) which would update asset limit in the Supplemental Security Income program.
Duration: May 11, 2023
to
present
General Issues: Education , Budget/Appropriations , Health Issues , Medicare/Medicaid , Labor Issues/Antitrust/Workplace , Insurance , Family Issues/Abortion/Adoption , Civil Rights/Civil Liberties , Housing , Medical/Disease Research/Clinical Labs , Transportation , Welfare
Spending: about $0 (But it's complicated. Here's why.)
It can be tricky to figure out how much an organization spent on a particular lobbying engagement. The law only requires lobbyists to report the amount they were paid for federal lobbying each quarter rounded to the nearest $10,000—and if it's less than $3,000 in a given quarter (or less than $13,000 for organizations with in-house lobbyists), they don't have to disclose it at all. Plus, some organizations include spending that doesn’t belong in the report—for instance, money spent lobbying state governments or other legal work.
Agencies lobbied since 2023: U.S. Senate, House of Representatives, Labor - Dept of (DOL), White House Office
Lobbyists
Lobbyists named here were listed on a filing related to this lobbying engagement. They may not be working on it now. Occasionally, a single lobbyist whose name is spelled two different ways on filings may be represented twice here.
Disclosures Filed
Once a lobbying engagement begins, the lobbyist or firm is required to file updates four times a year. Those updates sometimes change which lobbyists are involved or add new issues being discussed. When lobbyists stop working for a client, the firm is also supposed to file a report disclosing the end of the relationship.
1st Quarter, 2024
In Q1, NATIONAL DOWN SYNDROME CONGRESS had in-house lobbyists. The report was filed on April 30.
Original Filing: 301577485.xml
Lobbying Issues
We urged Congress to pass the following bills: Keeping All Students Safe Act (H.R.3470/S.1750),
RISE Act (H.R. 2401/S.1071), IDEA Full Funding Act (S. 2217), The Preparing and Retaining All (H.R.4550).
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Lobbied for increase funding for the Individual with Disabilities Education Act and the Transition and Postsecondary Programs for Students with Intellectual Disabilities.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
We urged Congress to pass the H.R.3380 - HEADs UP Act of 2023 which would authorize the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.
Advocated and lobbied for the Down Syndrome Diagnosis Act.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Urged Congress to pass Recognizing the Role of Direct Support Professionals Act (S.1332/H.R.2941) which would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.
SSI Savings Penalty Elimination Act, HCBS Relief Act, Eliminating Marriage Penalty in SSI Act (EMPSA)
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Urged Congress to pass the Transformation to Competitive Integrated Employment Act (S.533/H.R. 1263) which would phase out the use of subminimum certificates for people with disabilities. We also sent recommendations to the House and Senate for a reauthorization of the Workforce Innovation and Opportunity Act.
Agencies Lobbied
U.S. Senate U.S. House of Representatives Labor - Dept of (DOL)
Type of Issue
Labor Issues/Antitrust/Workplace
Lobbying Issues
We urge Congress to pass the SSI Savings Penalty Elimination Act (H.R. 5408/S.2767) which would update asset limit in the Supplemental Security Income program.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
4th Quarter, 2023
In Q4, NATIONAL DOWN SYNDROME CONGRESS had in-house lobbyists. The report was filed on Jan. 19.
Original Filing: 301531075.xml
Lobbying Issues
We urged Congress to pass the following bills: Keeping All Students Safe Act (H.R.3470/S.1750),
RISE Act (H.R. 2401/S.1071), IDEA Full Funding Act (S. 2217), The Preparing and Retaining All (H.R.4550).
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Lobbied for increase funding for the Individual with Disabilities Education Act and the Transition and Postsecondary Programs for Students with Intellectual Disabilities.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
We urged Congress to pass the H.R.3380 - HEADs UP Act of 2023 which would authorize the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.
Advocated and lobbied for the Down Syndrome Diagnosis Act.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Urged Congress to pass Recognizing the Role of Direct Support Professionals Act (S.1332/H.R.2941) which would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.
SSI Savings Penalty Elimination Act, HCBS Relief Act, Eliminating Marriage Penalty in SSI Act (EMPSA)
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Urged Congress to pass the Transformation to Competitive Integrated Employment Act (S.533/H.R. 1263) which would phase out the use of subminimum certificates for people with disabilities. We also sent recommendations to the House and Senate for a reauthorization of the Workforce Innovation and Opportunity Act.
Agencies Lobbied
U.S. Senate U.S. House of Representatives Labor - Dept of (DOL)
Type of Issue
Labor Issues/Antitrust/Workplace
Lobbying Issues
We urge Congress to pass the SSI Savings Penalty Elimination Act (H.R. 5408/S.2767) which would update asset limit in the Supplemental Security Income program.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
3rd Quarter, 2023
In Q3, NATIONAL DOWN SYNDROME CONGRESS had in-house lobbyists. The report was filed on Oct. 20, 2023.
Original Filing: 301512084.xml
Lobbying Issues
We urged Congress to pass the following bills: Keeping All Students Safe Act (H.R.3470/S.1750),
RISE Act (H.R. 2401/S.1071), IDEA Full Funding Act (S. 2217), The Preparing and Retaining All (H.R.4550).
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Lobbied for increase funding for the Individual with Disabilities Education Act and the Transition and Postsecondary Programs for Students with Intellectual Disabilities.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
We urged Congress to pass the H.R.3380 - HEADs UP Act of 2023 which would authorize the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Urged Congress to pass Recognizing the Role of Direct Support Professionals Act (S.1332/H.R.2941) which would require the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Urged Congress to pass the Transformation to Competitive Integrated Employment Act (S.533/H.R. 1263) which would phase out the use of subminimum certificates for people with disabilities. We also sent recommendations to the House and Senate for a reauthorization of the Workforce Innovation and Opportunity Act.
Agencies Lobbied
U.S. Senate U.S. House of Representatives Labor - Dept of (DOL)
Type of Issue
Labor Issues/Antitrust/Workplace
Lobbying Issues
We urge Congress to pass the SSI Savings Penalty Elimination Act (H.R. 5408/S.2767) which would update asset limit in the Supplemental Security Income program.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
2nd Quarter, 2023
In Q2, NATIONAL DOWN SYNDROME CONGRESS had in-house lobbyists. The report was filed on Aug. 5, 2023.
Original Filing: 301494448.xml
Lobbying Issues
We urged Congress to pass the following bills: Keeping All Students Safe Act (H.R.3470/S.1750),
RISE Act (H.R. 2401/S.1071), IDEA Full Funding Act (S. 2217), The Preparing and Retaining All (H.R.4550).
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
Lobbied for increase funding for the Individual with Disabilities Education Act and the Transition and Postsecondary Programs for Students with Intellectual Disabilities.
Agencies Lobbied
U.S. Senate U.S. House of Representatives
Lobbying Issues
We contacted Senators about an amendment to ensure that people with Down syndrome would specifically be included in Alzheimers research and treatments. This effort was done as part of the National Alzheimer's Project Act reauthorization.
Lobbying Issues
We urged Congress not include Medicaid work requirements as part of the Fiscal Responsibility Act of 2023 (FRA, Public Law 118-5). We urged Congress to pass the Work Without Worry Act (S.2196).
Agencies Lobbied
U.S. Senate U.S. House of Representatives White House Office
Lobbying Issues
Urged Congress to pass the Transformation to Competitive Integrated Employment Act (S.533/H.R. 1263). Urged the U.S. Department of Labor to issue a moratorium on the issuance of new 14(c) certificates.
Agencies Lobbied
U.S. Senate U.S. House of Representatives Labor - Dept of (DOL)
Type of Issue
Labor Issues/Antitrust/Workplace
2nd Quarter, 2023
NATIONAL DOWN SYNDROME CONGRESS filed a lobbying registration on May 11, 2023 for in-house lobbying efforts, effective May 11, 2023.
Original Filing: 301470858.xml
Issue(s) they said they’d lobby about: Education (including Postsecondary Education), Employment, Medicaid & Long Term Supports and Services, Civil Rights and Racial Equity, Family Support, Healthcare, Housing, Research, Social Security, and Transportation. .
Source: Clerk of the U.S. House of Representatives and Secretary of the Senate