Advocacy & Policy

group at Down syndrome advocacy conference

The NDSS Advocacy and Policy Program champions federal, state, and local policies that positively impact all people with Down syndrome across the country. Through our advocacy, NDSS works with Congress and federal agencies, as well as state and local officials, to develop and improve laws, regulations, and policies for the benefit of the Down syndrome community. NDSS also empowers self-advocates, families, and others to influence policy themselves. View our policy priorities by topic below or click to jump to your topic of interest to the right.
 

Email our Policy TeamDownload Policy Program Summary

Congressional task force

Congressional Task Force on Down Syndrome

In support of all our legislative priorities, NDSS champions the Congressional Task Force on Down Syndrome, a bipartisan, bicameral group of legislators committed to educating Members of Congress and their staff about Down syndrome and advancing legislative priorities that positively affect the Down syndrome community. NDSS is proud to collaborate with the Global Down Syndrome Foundation and the National Down Syndrome Congress (NDSC) in jointly supporting the work of the Task Force.  

Take action on this priority using our Action Alert here!

118th Congress Co-Chairs

Congresswoman Cathy McMorris Rodgers (R – WA)                          Senator Bob Casey (D – PA)
Congresswoman Eleanor Holmes Norton (D – DC)                              Senator Jerry Moran (R – KS)

Current Membership

Congressman Barry Moore (R – AL)                                          Senator Roger Marshall (R – KS)
Congressman Pete Sessions (R – TX)                                         Senator John Boozman (R – AR)
Congresswoman Sharice Davids (D – KS)                                 Senator James Risch (R – ID)
Congresswoman Nikki Budzinski (D – IL)                                 Senator Shelley Moore Capito (R – WV)
Congressman Anthony D’Esposito (R – NY)                            Senator Raphael Warnock (D – GA)
Congressman Jake Auchincloss (D – MA)                                Senator Jon Ossof (D - GA
Congressman John Rutherford (R – FL)
Congressman Alex Mooney (R – WV)
Congressman Jake LaTurner (R – KS)
Congressman Andrew Garbarino (R – NY)             

Health

Organ Transplant Discrimination Prevention

Organ Transplant Discrimination Toolkit

NDSS supports the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 2706/S. 1183). The bill is named after Charlotte Woodward, an advocate with Down syndrome and member of the NDSS staff who received a life-saving heart transplant a decade ago. Since then, she has advocated tirelessly to ensure others with Down syndrome and other disabilities have the same access to life-saving care that she did. NDSS supports this legislation because it would prevent discrimination based solely on disability in the organ transplantation process and provides additional legal recourse to people with Down syndrome and other disabilities should they experience discrimination.

Until a federal law is passed, NDSS will continue to work to protect people with disabilities from discrimination in organ transplantation at the state level. Currently, 40 states have laws in place that prohibit this discrimination:  

Health

Alzheimer’s Disease

Alzheimer's Disease Toolkit

NDSS supports legislation and regulatory action that includes people with Down syndrome in efforts to research, cure, and treat Alzheimer’s disease. People with Down syndrome are uniquely situated in the Alzheimer’s landscape because they have an extra copy of chromosome 21. The 21st chromosome carries the amyloid precursor protein (APP) gene, which is strongly associated with the formation of amyloid peptides and plaques, a hallmark of Alzheimer’s disease. As a result, individuals with Down syndrome have an elevated lifetime risk of developing Alzheimer’s disease, with the onset of symptoms coming earlier and progressing faster than in the general population. 
 
NDSS calls on Congress to improve supports for the Down syndrome community related to Alzheimer’s disease, encompassing supports for patients with Down syndrome, their caregivers, and the healthcare providers upon whom they rely for diagnosis and treatment. Additionally, NDSS supports coverage determinations that ensure access to and coverage of safe and effective Alzheimer’s treatments.  

Health

Prohibition of the Use of QALYs and Similar Discriminatory Metrics

Quality Adjusted Life Years (QALYs) and similar metrics exist to measure the value of health outcomes by placing a numerical value on the quality of one’s life before and after healthcare treatments and interventions. People with disabilities are frequently assigned a lower QALY value. These measurements are regularly used by federal programs, such as Medicaid, to determine the cost-effectiveness of treatments and services, and thus coverage for patients. Since a substantial number of individuals with disabilities receive their health care through Medicaid, this flawed and discriminatory metric directly impacts access to necessary, and at times critical, healthcare treatments when they are not deemed “cost-effective” enough to administer to individuals with disabilities. 

H.R. 485 Letter of Support 

H.R. 485 Fact Sheet 

NDSS Testimony to Congress 

NDSS supports legislation, H.R. 485, the Protecting Health Care for All Patients Act, which would prohibit the utilization of QALYs and similar metrics in federal health programs. In February 2023, NDSS President and CEO, Kandi Pickard, testified in support of the bill to the United States House of Representatives Committee on Energy and Commerce, Subcommittee on Health. NDSS calls on Congress to pass H.R. 485 and end this discrimination.  

Health

Reauthorization and Increased Funding for the Public Health Efforts to Support Individuals with Congenital Heart Disease (CHD)

As part of the Affordable Care Act of 2010 (Public Law 111 – 148), Congress authorized the first Congenital Heart Futures Act to support public health efforts at the Centers for Disease Control and Prevention (CDC) to improve childhood survival rates, prevent premature death and disability, and increase quality of life for the two-and-a-half million Americans living with congenital heart disease (CHD). Since its inception, these efforts have resulted in significant improvements and advancements in support for individuals with CHD. This issue is of particular importance to the Down syndrome community because approximately half of all infants born with Down syndrome have a heart condition. In the 118th Congress, NDSS supports the Congenital Heart Futures Reauthorization Act of 2024 which would extend funding for these efforts.  

Doug & Jenna's Story

Take action on this priority using our Action Alert here!  

Learn more about Down syndrome and the heart here.  

Health

Prenatal & Postnatal Information

NDSS is a pro-information organization, and one of our key legislative priorities is ensuring that all women and families across the country receive the most accurate, up-to-date, evidence-based information available about Down syndrome when receiving a prenatal or postnatal diagnosis.

The Prenatally & Postnatally Diagnosed Condition Act (Public Law 110-374) was enacted into federal law in 2008 to increase the readiness of accurate, up-to-date, and balanced information about Down syndrome to women and families considering prenatal testing. The federal law was not funded, and, in the absence of funding, advocates have taken up the issue with their state legislatures. 

NDSS supports state pro-information laws that ensure health care providers disseminate accurate and up-to-date information to anyone receiving a diagnosis of Down syndrome. The following states have passed Down syndrome information bills: 

Employment & economic self-sufficiency

Achieving a Better Life Experience (ABLE) Accounts

ABLE Toolkit

ABLE Accounts were created after the passage of The Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act (Division B of PL 113- 295). They are an investment account similar to a 401(k) or a 529 college savings account. NDSS has been a leader in ABLE education and advocacy since the original passage of the bill. Click the toolkit above to learn more and get involved with our advocacy efforts!

Employment & economic self-sufficiency

Subminimum Wage

Ending Subminimum Wage Toolkit

Employment & economic self-sufficiency

Increased Asset Limitations and Elimination of the Marriage Penalty

SSI Toolkit

NDSS supports the SSI Savings Penalty Elimination Act (H.R. 5408/S. 2767) which would increase the allowable assets individuals with disabilities may possess while remaining eligible for government benefits and eliminate the marriage penalty. Currently, individuals cannot have more than $2,000 in assets without affecting their eligibility for critical government benefits. For married couples who are both SSI eligible, this limit is $3,000 combined. As a result, most individuals with IDD cannot marry without fear of losing their critical benefits. These limitations have not been changed in many years and have not increased to account for inflation or other economic factors. NDSS advocates for both increased asset limitations and elimination of the marriage penalty so that individuals with Down syndrome and other disabilities can work, save, and marry who they choose. 

Education

Increased funding for the Individuals with Disabilities Education Act (IDEA) 

Take action on this priority using our Action Alert here! 

The Individuals with Disabilities Education Act (IDEA) (Public Law 101-476) makes available a free and appropriate public education to students with disabilities that fits their individual needs. Despite the federal government’s promise to pay 40% of the extra cost of educating students under the IDEA, estimates show that the federal government covers only 14.6% of the cost. NDSS supports fully funding the IDEA at the level promised by the federal government because it would significantly increase the quality and quantity of education and related services made available to students with Down syndrome and other disabilities.

Education

Restraint and Seclusion

Take action on this priority using our Action Alert here! 

NDSS supports legislation that prohibits schools that receive federal funding from secluding or physically, mechanically, or chemically restraining students except when absolutely necessary in order to protect the safety of students and staff. Additionally, we support better equipping school personnel with the training they need to effectively implement evidence-based and proactive behavior intervention strategies. Harmful seclusion and restraint practices are disproportionately used on students with disabilities. We believe that students with disabilities deserve to be treated with dignity and respect and should be protected from the risk of traumatic, dangerous, and dehumanizing procedures as a means of managing challenging behavior in school.