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NCD applauds HHS final rule updating Section 504
May 1, 2024
WASHINGTON–The National Council on Disability applauds an update to Section 504 of the Rehabilitation Act of 1973, having now impacted the disability community over five decades since it became law.
Today, leaders from the U.S. Department of Health and Human Services through its Office for Civil Rights (OCR), announced a final rule that prohibits discrimination on the basis of disability under Section 504.
The rule, titled Discrimination on the Basis of Disability in Health and Human Service Programs or Activities, advances equity and bolsters protections for people with disabilities. It clarifies and strengthens civil rights protections for people with disabilities, addresses discrimination in medical treatment, adds enforceable standards for accessible medical diagnostic equipment, and ensures accessible web content and mobile apps.
“We’re thrilled to see decades of NCD’s research, from Rehabilitating Section 504 to Rocking the Cradle to our more recent bioethics series, reflected in this groundbreaking rule,” said NCD Chair Claudia Gordon. “We are very pleased to have helped shape this final, historic regulation.”
NCD as an independent federal agency makes recommendations to the President, Congress and federal agencies on disability policy. The agency has a long history of recommendations on Section 504.
“The pandemic exposed the devastating consequences of unequal access for people with disabilities,” said Chair Gordon. “Today’s rule from HHS OCR marks a significant step towards greater inclusion, and we commend their tireless efforts in bringing it to fruition.”
The rule advances the promise of the Rehabilitation Act and helps protect people with disabilities from experiencing discrimination in any program or activity receiving funding from HHS because of their disability.
The final rule can be viewed or downloaded at:
An HHS Fact Sheet on the final rule is available at:
DRAFT US Congressional FY2025 Appropriations Language Urging Federal Investment in Cerebral Palsy Research
April 2024
CDC, Birth Defects, Developmental Disabilities, Disabilities and Health:
Cerebral Palsy (CP) is caused by an early developmental brain injury and is the most common, lifelong motor disability. The mechanism and type of injury underlying CP is still not well-understood, which can include perinatal stroke, maternal infection, genetics and/or hypoxic ischemic encephalopathy (HIE). The Committee is encouraged to provide $2,000,000 for the Centers for Disease Control and Prevention (CDC) to continue population-based surveillance of cerebral palsy under the Autism and Developmental Disorders Monitoring (ADDM) Network. The Committee also encourages CDC to expand research efforts on prevalence, risk factors, early detection and co-morbidities of cerebral palsy in order to determine if the cerebral palsy population is rising, dropping or staying the same.
NIH, Eunice Kennedy Shriver National Institute of Child Health and Development/NINDS:
The Committee encourages NIH to continue to prioritize and invest in research on CP, including the establishment of a Cerebral Palsy Notice of Special Interest (NOSI) to significantly strengthen and accelerate CP research priorities across the lifespan. The CP NOSI should focus on basic and translational discoveries, as well as implementation, observational, and clinical studies aimed at early detection and intervention, comparative effectiveness, and functional outcomes.
The Committee encourages NIH to update the 2017 NINDS/NICHD Strategic Plan for Cerebral Palsy Research based on the information presented at the 2022 workshop held by NINDS and NICHD, including research on lifespan issues to address the needs of transition-age youth and adults with CP, and research to support the development and delivery of new and improved screening tools, treatments, and interventions. The Committee also encourages NIH to consider research opportunities focusing on the motor and health benefits of physical activity specifically for individuals with CP across all Gross Motor Functional Classification levels, which is vital to help prevent chronic disease and premature aging.
Centers for Disease Control and Prevention (CDC) Adds Cerebral Palsy to Surveillance Efforts as a Result of CPF Advocacy Impact
October 2023
For the first time in over a decade as a result of legislative advocacy efforts led by the Cerebral Palsy Foundation, the Centers for Disease Control and Prevention network that tracks the prevalence of autism is expanding to include Cerebral Palsy - the most common lifelong physical disability.
The CDC said that five of its Autism and Developmental Disabilities Monitoring Network (ADDM) sites will start tracking the incidence and prevalence of cerebral palsy in their communities in addition to autism.
“The new tracking activities will address important data gaps on the prevalence of cerebral palsy among children in the United States, as well as disparities in prevalence and early identification,” said Matt Maenner, chief of the child development and disability branch at the CDC’s National Center on Birth Defects and Developmental Disabilities.
The Autism and Developmental Disabilities Monitoring Network previously tracked cerebral palsy in 8-year-olds, but data on the condition was last collected in 2010. Since that time, there wasn’t funding to continue monitoring the condition.
As a result of long term policy and advocacy efforts led by the Cerebral Palsy Foundation and committed stakeholders, there is now dedicated funding for cerebral palsy surveillance in Minnesota, Missouri, Utah, Tennessee and Georgia.
“In the time since we’ve last published data, there have been reported decreases in CP prevalence in other high-income countries, but we have no idea whether we will see the same thing in the United States given differences in the populations, health care systems and disparities in risk factors such as preterm birth,” Maenner said.
Researchers behind the new cerebral palsy surveillance say they are hopeful that better surveillance information will ultimately lead to earlier diagnosis across the US so young children can access treatment sooner, leading to better outcomes, and increased availability of services.
The Cerebral Palsy Foundation Achieves Historic Advocacy Success!
August 2023
Did you know the Cerebral Palsy Foundation works year round on a variety of advocacy initiatives encouraging investment in cerebral palsy research funding across the lifespan?
As a result of our efforts and work with key legislators, we are thrilled to announce US Congressional legislation recently passed establishing Cerebral Palsy research surveillance at the Centers for Disease Control and Prevention (CDC) and establishing $5MM in cerebral palsy funding for the first time.
Our advocacy efforts, as part of the Consolidated Appropriations Act, 2023, helped secure a new CDC funding increase to add four new cerebral palsy research sites.
The four sites selected to begin Cerebral Palsy research work within the Autism & Developmental Disability Monitoring Network are:
University of Utah (UT)
Regents of the University of Minnesota (MN)
Vanderbilt University Medical Center (TN)
Washington University in St. Louis (MO)
This research will focus on the following objectives:
Assess a state’s capacity for conducting Cerebral Palsy surveillance
Pilot surveillance methods for reporting prevalence and early identification of Cerebral Palsy among children
Report preliminary findings of piloting Cerebral Palsy surveillance and develop recommendations for inclusion of Cerebral Palsy in surveillance year 2024 activities
Implement CP surveillance methodology for surveillance year 2024
We are proud of our advocacy leadership that is driving forward much needed federal government support and investment in cerebral palsy research improving lives across the lifespan. Our work continues educating and increasing public health awareness among policy makers, stakeholders, other organizations and the cerebral palsy community.
To keep up with our advocacy and policy work please visit this site often and also sign up for our email newsletter.
The Cerebral Palsy Community Makes Federal Impact for Cerebral Palsy Research!
Cerebral Palsy Foundation Advances Congressional Cerebral Palsy Research Investment Across the Lifespan for Fiscal Year 2024
April 2023
The Cerebral Palsy Foundation continues its advocacy leadership urging Congress to prioritize federal investment in cerebral palsy research across the lifespan of people with cerebral palsy. We have continued to build from the significant success advocating for fiscal year 2023 Congressional report language that resulted in significant improvements in NIH cerebral palsy research focus and the vital addition of cerebral palsy back into the national Autism and Developmental Disability Monitoring Network (ADDM) in at least two existing sites. These legislative advances benefit the entire cerebral palsy community - stakeholders, families, researchers, healthcare providers and move the field forward to be able to create positive change, conduct more needed research and improve outcomes for people of all ages with cerebral palsy.
FY24 Labor Health and Human Services Draft Congressional Appropriations Report Language
Centers for Disease Control and Prevention (CDC):
Cerebral Palsy (CP) is the most common, lifelong physical disability caused by an early developmental brain injury affecting more than 1,000,000 Americans. The mechanism and type of injury underlying CP is still not well-understood, which can include prematurity, perinatal stroke, maternal infection, genetics and/or hypoxic ischemic encephalopathy (HIE). The Committee continues to support the inclusion of Cerebral Palsy in at least two of the Autism and Developmental Disabilities Monitoring Network (ADDM) sites; however, there is currently no federal research program to focus on this significant public health need. Therefore, the Committee directs the CDC to support research on the diagnosis, treatment, mitigation, health care costs, societal costs of cerebral palsy, and track the number of people diagnosed with CP in the United States across the lifespan.
Activities shall include population-based surveillance at US pilot sites to expand scientific knowledge on prevalence, risk factors, early detection and co-morbidities of cerebral palsy in order to determine if the cerebral palsy population is rising, dropping or staying the same.
National Institutes of Health (NIH):
The Committee directs the National Institutes of Health (NIH) to continue to prioritize and invest in research on cerebral palsy (CP) including the establishment of a Cerebral Palsy Notice of Special Interest (NOSI) to significantly strengthen and accelerate CP research priorities across the lifespan. The Cerebral Palsy NOSI should focus on basic and translational discoveries, as well as implementation science, observational, and clinical studies aimed at early detection and intervention, comparative effectiveness, and functional outcomes.
While some progress has been made in the understanding of CP, the most common lifelong physical disability, large gaps remain that must be addressed to improve outcomes and treatment for the cerebral palsy population and their families, impacting quality of life and reducing medical costs. Similarly, to address the racial and socioeconomic health equity challenges experienced by the cerebral palsy population, it is imperative that greater investment is made to address disparities in access to interventions and stakeholder engagement.
The Committee directs NIH to support greater investment in research focused on the areas in need of growth including research on lifespan issues to address the needs of transition-age youth and adults with cerebral palsy inclusive of mental health issues, as well as research to support the development and delivery of new and improved screening tools, treatments and interventions.
The Committee directs the National Institute of Mental Health (NIMH) to direct increased attention towards mental health in the cerebral palsy population. Studies indicate that adults with cerebral palsy have significantly higher age-standardized prevalence of mental health disorders compared to adults without cerebral palsy. Despite advances in the treatment of depression and other serious mental illnesses, there is little research and evidence-based interventions focused on the cerebral palsy population across the lifespan.
The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) is also encouraged to consider a neuroplasticity workshop and research opportunities focusing on the motor and health benefits of physical activity specifically for individuals with CP across all Gross Motor Functional Classification levels which are so vital to help prevent chronic disease and premature aging.
Cerebral Palsy Foundation Invited to Provide Public Witness Testimony to US House of Representatives Labor Health and Human Services Subcommittee Regarding Need for Cerebral Palsy Research Federal Funding
March 23, 2023, Washington DC
The Cerebral Palsy Foundation and key advocates traveled to Washington DC on March 23rd to provide Public Witness testimony to the US House of Representatives Labor Health and Human Services Appropriations SubCommittee. Cerebral Palsy Foundation Ambassador and Advocate Michael Kutcher delivered the Cerebral Palsy Foundation testimony on behalf of the 1,000,000 + Americans impacted by cerebral palsy and their families. Also making the trip along with Michael Kutcher, was Cerebral Palsy Foundation Senior Vice President and mother of a daughter with cerebral palsy Cynthia Frisina, Mrs. America Nicole Zwiercan who is also a passionate advocate and mother of a young child with cerebral palsy, and Kyle Khachadurian, Digital Communications Manager for the Cerebral Palsy Foundation and adult living with cerebral palsy.
Here is the submitted public witness testimony.
Cerebral Palsy Research Act
March 1st, 2023
WASHINGTON -- Congressman Steve Cohen (TN), with bipartisan co-sponsors Congressmen Brian Fitzpatrick (PA) and Emanuel Cleaver (MO), today introduced the Cerebral Palsy Research Program Act which would create a cerebral palsy research program within the Centers for Disease Control and Prevention (CDC) and provide the first-ever dedicated source of federal funding for cerebral palsy research.Cerebral palsy (CP) is the most common life-long physical disability, occurring in approximately one out of 345 children and approximately one million people in the United States. However, there is not a federal research program that focuses on the disability.“The lack of dedicated federal funding has limited any potential advances into the care and treatment of cerebral palsy,” said Congressman Cohen. “Many people with CP visit pediatricians throughout their lives because there is no standard of care for treating CP and very few health care providers specialize in treating adults with CP. Few providers are even aware of how CP affects an adult.”The Cerebral Palsy Research Program Act would direct the CDC to establish a research program to support research on the diagnosis, treatment, mitigation, health care costs, and societal costs of cerebral palsy and track the number of people diagnosed with CP in the United States. Additionally, it would provide funds to the National Institutes of Health to update and publish a Strategic Plan on Cerebral Palsy, which was last published in 2017.“As we kick off Cerebral Palsy Awareness Month 2023, I’m extraordinarily proud to introduce the bipartisan Cerebral Palsy Research Program Act with my friend, Representative Cohen,” said Congressman Cleaver. “CP is the most common lifelong motor disability for Americans, yet for far too long, Congress has overlooked the critical public health need to fund, research and develop new treatments and technologies that can support individuals living daily with CP. With this common sense proposal, we can begin to right that wrong, and take the steps necessary to improve the lives of every child and adult living with CP -- and I believe that’s something everyone in Congress should be able to support.”“Cerebral palsy i the most common of all diagnosed childhood disabilities, and nearly 10,000 babies born each year will develop CP, yet, there is currently no designated federal funding for CP research,” said Representative Fitzpatrick. “I am pleased to join Representatives Cohen and Cleaver to introduce the bipartisan Cerebral Palsy Research Program Act, which will support CP research, diagnosis, and treatment efforts and improve the lives of the more than 1,000,000 Americans living with CP.” Cynthia Frisina, Cerebral Palsy Foundation Senior Vice President, mother of a daughter with cerebral palsy and the creator of National Cerebral Palsy Awareness Day, said, “The Cerebral Palsy Research Program Act will profoundly improve the lives of people with cerebral palsy across the lifespan, and their families. The cerebral palsy community strongly supports this critical public health research need. With dedicated investment and commitment by Congress, we will finally see breakthroughs in improved treatments, prevention and enhanced healthcare that people living with cerebral palsy deserve.”
BREAKING NEWS- December 29, 2022
On December 29, 2022, President Biden signed H.R. 2617, the Consolidated Appropriations Act, 2023, which funds the federal government through September 30, 2023. In large part due to the ongoing efforts of the cerebral palsy community, and the leadership of the Cerebral Palsy Foundation year round advocacy efforts, we now have specific Cerebral Palsy Funding for the CDC and Enhanced Cerebral Palsy Focus at the NIH!
The 2023 Appropriations bill includes the strongest language yet increasing research focus and funding for cerebral palsy at the Centers for Disease Control (CDC), and National Institutes of Health (NIH). This is incredibly important since cerebral palsy is the most common lifelong physical disability and is disproportionately underfunded compared to the number of Americans impacted.
Centers for Disease Control and Prevention (CDC)
We were successful in re-establishing cerebral palsy surveillance research in the Autism Developmental Disabilities Monitoring Network (ADDM) in at least two ADDM sites in the US which will be an approximately $2,000,000 in new research investment for 2023. This is vitally important in order to better understand the numbers of people with cerebral palsy at a variety of ages, as well as risk factor identification and other key measures.
With regard to additional disability and health activities at CDC, the agreement also includes an increase of $3,000,000 to strengthen existing programs that address healthy athletes with intellectual disability, and an increase of $1,000,000 to continue existing activities that improve physical activity and fund health promotion for people with mobility disabilities.
National Institutes of Health (NIH)
Additionally, we were able to help secure the strongest appropriations language yet for Cerebral Palsy research focus at the NIH across the lifespan.
The 2023 NIH Appropriations language reads as follows and was passed into law:
Cerebral Palsy (CP).-The agreement encourages NIH to continue to prioritize and invest in research on CP and to focus on basic and translational discoveries, as well as implementation, observational, and clinical studies aimed at early detection and intervention, comparative effectiveness, and functional outcomes. The agreement encourages NIH to support greater investment in research focused on the areas in need of growth, as outlined in the Strategic Plan on Cerebral Palsy Research, including research on lifespan issues to address the needs of transition age youth and adults with CP, and research to support the development and delivery of new and improved screening tools, treatments, and interventions. The agreement also encourages NIH to consider research opportunities focusing on the motor and health benefits of physical activity specifically for individuals with CP across all Gross Motor Functional Classification levels, which is vital to help prevent chronic disease and premature aging.
Other important legislation in this Act include:
The Agency for Healthcare Research and Quality (AHRQ) – The 2023 bill includes language on disability research. The bill includes $750,000 for AHRQ to work with stakeholders to develop a research agenda and report for dissemination on health promotion, disease prevention, and intervention strategies for people with disabilities.
The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILR) – The 2023 agreement notes the potential of emerging technologies to expand voting access to individuals with disabilities. The Committee encourages NIDILRR to consider a feasibility analysis into the use of emerging technologies to assist with voting access for individuals with disabilities, that includes, but is not limited to, the particular voting challenges faced by individuals with disabilities and how emerging technologies could be utilized.
The 2023 bill also includes a new policy requiring that all states to cover continuously (with no break with regard to changes in circumstances) healthcare for children under age 19 enrolled in Medicaid and Children’s Health Insurance Program (CHIP) for twelve months..
Previous Updates
March 29, 2022
WASHINGTON -- Congressman Steve Cohen (TN), with bipartisan co-sponsors Congressmen Brian Fitzpatrick (PA) and Emanuel Cleaver (MO), today introduced the Cerebral Palsy Research Program Act which would create a cerebral palsy research program within the Centers for Disease Control and Prevention (CDC) and provide the first-ever dedicated source of federal funding for cerebral palsy research.
Cerebral palsy (CP) is the most common life-long physical disability, occurring in approximately one out of 345 children and approximately one million people in the United States. However, there is not a federal research program that focuses on the disability.
“The lack of dedicated federal funding has limited any potential advances into the care and treatment of cerebral palsy,” said Congressman Cohen. “Many people with CP visit pediatricians throughout their lives because there is no standard of care for treating CP and very few health care providers specialize in treating adults with CP. Few providers are even aware of how CP affects an adult.”
The Cerebral Palsy Research Program Act would direct the CDC to establish a research program to support research on the diagnosis, treatment, mitigation, health care costs, and societal costs of cerebral palsy and track the number of people diagnosed with CP in the United States. Additionally, it would provide funds to the National Institutes of Health to update and publish a Strategic Plan on Cerebral Palsy, which was last published in 2017.
“As we come to the conclusion of Cerebral Palsy Awareness Month, I’m extraordinarily proud to introduce the bipartisan Cerebral Palsy Research Program Act with my friend, Representative Cohen,” said Congressman Cleaver. “CP is the most common motor disability for American children, yet for far too long, Congress has overlooked the desperate need to fund, research and develop new treatments and technologies that can support individuals living daily with CP. With this common sense proposal, we can begin to right that wrong and take the steps necessary to improve the lives of every child living with CP -- and I believe that’s something everyone in Congress should be able to support.”
“Cerebral palsy is one of the most common of all diagnosed childhood disabilities, and nearly 10,000 babies born each year will develop CP, yet, there is currently no designated federal funding for CP research,” said Representative Fitzpatrick. “I am pleased to join Representatives Cohen and Cleaver to introduce the bipartisan Cerebral Palsy Research Program Act, which will support CP research, diagnosis, and treatment efforts and improve the lives of hundreds of thousands of Americans living with CP.”
Cynthia Frisina, Cerebral Palsy Foundation Senior Vice President, mother of a daughter with cerebral palsy and the creator of National Cerebral Palsy Awareness Day, said, “The Cerebral Palsy Research Program Act will profoundly improve the lives of people with cerebral palsy and their families. The cerebral palsy community strongly supports this critical public health research need. With dedicated investment by the federal government, we will finally see breakthroughs in treatment, prevention and enhanced healthcare across the lifespan for millions of Americans.”
Click on learn more to access the detailed bill.
Congressional Briefing for Cerebral Palsy
We need your voice to be heard!
Cerebral Palsy remains under supported and is a critical public health issue. We need your voice to be heard! The Cerebral Palsy Foundation is urging Congress to support federal funding for important Cerebral Palsy research at the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) in order to improve lives and change outcomes. Learn why this is so important right now HERE