UCP Media Contact: James Garcia, UCP Communications Coordinator
UCP to open annual grant application process on National Cerebral Palsy Awareness Day, March 25
The United Cerebral Palsy Research Initiative for the second year will begin accepting grant applications for awards of up to $20,000.
March 13, 2023
VIENNA, VIRGINIA: The United Cerebral Palsy Research Initiative for the second year will begin accepting grant applications for awards of up to $20,000 on National Cerebral Palsy Awareness Day, March 25, for translational research addres¬¬¬sing early diagnosis and treatment of cerebral palsy and related neurodevelopmental disabilities.
“These are very exciting times in the world of scientific research into the causes and treatments of cerebral palsy,” said UCP President and CEO Armando Contreras. “The goal of our grant program is to help fund cutting-edge science, including genomic research and other groundbreaking methods of diagnosis, that help identify and treat cerebral palsy and other IDDs as soon as possible in a person’s life.”
Cerebral palsy (CP) is the most common physical disability in childhood, affecting both movement and posture. Although causes vary, cerebral palsy is a developmental disorder caused by abnormal development or damage to motor systems before, during, or shortly after birth. About 1 in 345 children born in the U.S. are diagnosed with cerebral palsy, and some 17 million people worldwide have CP. There is no cure for cerebral palsy, but recent research has shown as many as 30 percent of all cases may have genetic links.
“Early detection of cerebral is a paradigm shift in diagnosing and treating cerebral palsy. The UCP grant program is part of an effort by our national organization to translate research into transformative treatment of cerebral palsy and other neurodevelopmental disabilities,” said Valerie Pieraccini, Executive Director of Therapy and Early Learning at UCP of Central Arizona and co-chair of the UCP Research Committee. “The UCP Research Committee is also providing training for practitioners in our affiliates, the people who work directly with children and adults with CP. By offering scholarships to empower clinicians to participate in research as well as use evidence-based interventions in practice, UCP hopes to create hope for those with CP in communities across our nation that our affiliates serve.”
The Research Committee’s co-chair is Dr. Michael Kruer, director of the Cerebral Palsy & Pediatric Movement Disorders Program at Phoenix Children’s Hospital and associate professor of Child Health Genetics, Neurology and Cellular & Molecular Medicine at the University of Arizona College of Medicine in Phoenix.
Kruer said breakthroughs in genomic research are helping people living with cerebral palsy and other neurodevelopmental disabilities through better understanding that results in individualized diagnosis and treatment.
“Research into the causes behind early brain injury and the genetic determinants of disorders and disease, such as rare mutations, are changing what we’ve learned about neurodevelopmental disorders,” said Kruer. “The one thing we’ve known for many years is that diagnosing and treating children with CP as early as possible is the best way to help them live long and independent lives.”
Applicants this year will be asked to first submit a letter of intent describing the subject and scope of their research project. The program will award grants to projects aimed at advancing clinical and translational research that bridges the gap between research and care and helps transform the lives of children and adults with cerebral palsy and related neurodevelopmental disabilities.
Applications on any topics relevant to cerebral palsy and related neurodevelopmental disabilities will be accepted from researchers and clinicians in the U.S. and Canada, though preference will be given to projects focused on early diagnosis and early treatment of cerebral palsy and those from either UCP affiliates or researchers who collaborate with one or more of our affiliates. Both biomedical and therapy-focused studies are welcomed.
The UCP Research Committee will award grants of up to $20,000. Researchers in the U.S. and Canada are eligible to apply. This marks the second year for the program.
Applications will be available on UCP’s website beginning March 25. The deadline to apply is June 9, 2023 with a letter of intent to apply due on April 14, 2023. Grants will be awarded in late August.
For more information, go to ucp.org or send questions to email@example.com.
About United Cerebral Palsy
The mission of United Cerebral Palsy is to be the indispensable resource for people with cerebral palsy, Down syndrome, autism spectrum disorder and other neurodevelopmental disabilities. Founded in 1949, UCP has 56 affiliates (54 in the U.S. and two in Canada) that provide a wide range of services annually to more than 150,000 children and adults, including resources and referrals, advocacy, research, educational instruction, early intervention, physical therapy, job training, integrated employment, home and community-based services, recreational opportunities and housing assistance. UCP also advocates for direct support professionals (DSPs) and other direct care workers. We believe all people with disabilities should be treated as equal members of an inclusive society so they can “live life without limits.”
New Report: Access to Disability Care Has Dropped to Dangerous Levels Nationwide as Workforce Shortage Grows More Severe
FOR IMMEDIATE RELEASE: February 28, 2023
- ANCOR and UCP’s Case for Inclusion 2023 reveals over 60% of disability service providers discontinued programs or services in the past year, and over 80% are turning away people in need of services, due to short staffing
- National median wage for direct care workers, who are 86% women and 61% people of color, is less than $14 per hour
WASHINGTON, D.C. – A new report issued today by the American Network of Community Options and Resources (ANCOR) Foundation and United Cerebral Palsy (UCP) finds that as the need for home- and community-based services (HCBS) funding grows more dire, provider organizations are struggling to maintain programs and services for people with intellectual and developmental disabilities (IDD) due to significant shortages of caregivers.
The Case for Inclusion 2023, the most comprehensive annual look at the nation’s state of services for people with IDD and the workers who care for them, reports that in the past year alone, 63% of community service providers have discontinued programs or services due to lack of available staff. This represents a staggering 85% jump since the early days of the COVID-19 pandemic.
In addition, more than half of providers surveyed say they are considering cutting more programs or reducing existing services, while 83% are turning away or not accepting new referrals of people with disabilities who need care.
“Coming out of the peak pandemic, there was a glimmer of hope that things would get better and that we’d be able to move from our isolation model back to offering community events. But things have only gotten worse. Instead of returning to some sort of ‘normal,’ we’re shutting down additional services and turning away more new referrals because we don’t have enough Medicaid funding to pay and retain DSPs,” said Linda Timmons, President and CEO at Mosaic, a community service provider. “Before the pandemic, our DSP turnover rate was 45%. Now it’s closer to 70%, with 20% of our positions vacant at any one time, and that’s across all 13 states where we operate. We are at the breaking point we’ve been warning about for years.”
The crisis-level workforce shortage of direct support professionals (DSPs) is directly tied to stagnant Medicaid reimbursement rates, which prevent disability service providers from raising wages in order to attract and retain workers, and compete with increased salaries in other hourly-wage, private sector jobs. DSPs earn just $13.36 per hour on average, although median hourly wages for these workers in some states fall below $9 and starting hourly wages elsewhere hover around $8.
Meanwhile, by 2030, the demand for workers to deliver home- and community-based services is projected to increase by 37% over 2020 levels, with an estimated 7.9 million new job openings.
“Unlivable wages are forcing workers out of the field, accelerating program closures and service reductions for people with disabilities, and leaving them at greater risk of institutionalization. Even so, HCBS funding is often excluded from legislative agendas altogether or voted down when on the agenda,” said Barbara Merrill, Chief Executive Officer for ANCOR. “Without intentional and urgent investment, the community integration promised to people with disabilities through Olmstead [Supreme Court decision] and the Americans with Disabilities Act will never be realized, putting our system of support at risk of collapse. Lawmakers need to recommit to this promise and guarantee that the 2.5 million people nationwide with IDD and their families have access to essential services and that the workforce that supports them are paid living wages.”
“Threats to community-based services due to workforce and funding shortages have existed for decades, but the threat has escalated to dangerous levels, forcing providers to deny access to crucial care and other support services for people with IDD,” said UCP President and CEO Armando Contreras. “The Case for Inclusion 2023 highlights how these threats are growing, as nearly a half-million people languish on states’ waiting lists for services, essential programs are being cut or discontinued at alarming rates, and service providers’ ability to grow their workforce and cope with shocking turnover rates is shrinking. The time for bold, decisive action to stabilize the DSP workforce and rebuild community-based services is now.”
Contreras also points to data included in the Case for Inclusion 2023 this year on workforce demographics, revealing that the current DSP workforce is predominantly women (86%) and people of color (61%), and includes a fast-growing segment of immigrants. In fact, while immigrants make up 16% of the total U.S. labor force, they make up 31% of home care workers.
“Medicaid reimbursement rates are primarily to blame for today’s DSP workforce crisis,” Contreras said. “It’s said that if you want to know why the caregiving workforce is so poorly paid and unappreciated, we only need remember that we’ve always underpaid women and people of color.”
Given the composition of the direct care workforce, continued underinvestment in HCBS is perpetuating racial and economic inequities. But the lack of sufficient data on social determinants among DSPs presents added challenges. Yet we know that among home care workers, which encompasses many types of jobs including DSPs, more than half receive some form of public assistance, with a median annual income of $19,100, and 43% live in a low-income household.
Making matters worse, a “Direct Support Professional” who serves people with IDD is not formally recognized as an occupation by the federal government and there is no federal requirement for states to collect or report regional workforce data, giving the federal Centers for Medicare and Medicaid Services (CMS) little information to assess the adequacy and equity of state wage rates.
Additional Key Findings of the Case for Inclusion 2023 Include:
- State participation in Money Follows the Person (MFP) has decreased to just 36 states, down from 44 states in 2016. MFP is a federal grant-funded program that helps people with disabilities voluntarily move out of institutional care and into the community
- 481,601 people with IDD remained on state waiting lists for services as of the end of 2021. Now, with program closures and service reductions growing, there is no assurance that a service provider will be available when a person with IDD makes it off of a waiting list.
- Low wages are not the only issue plaguing DSPs: 55% reported physical and/or emotional burnout as a result of the pandemic, 56% reported experiencing anxiety, 43% reported experiencing sleep difficulties and 40% reported experiencing depression.
- Only 22% of people with IDD who received employment or day services were working in integrated settings, meaning they are employed alongside non-disabled workers. This percentage has remained nearly unchanged, hovering between 19% and 22%, since 2013. Meanwhile, of the 36 states that report data on the number of people with IDD who are employed, only 19% were working for pay.
The Case for Inclusion 2023 comes at a critical time, when the HCBS Settings Rule, established to ensure people receiving services do so within their communities when possible, instead of institutional settings, is slated to formally go into effect this March. Due to the severe workforce shortage, compliance is nearly impossible for every single state in the US, leading CMS to issue corrective action plans to put states on a longer-term pathway to compliance.
To date, many disability service providers have been relying on regulatory flexibilities allowed by the COVID-19 National Emergency Declaration when it comes to staffing, but as President Biden announced that emergency declaration will lift soon, thousands will again fall out of compliance with federal regulations.
Looking forward, the Case for Inclusion 2023 also includes specific policy solutions tailored for the 118th Congress, the Biden administration, state governments, providers and other stakeholders.
Proposed solutions include:
- Congress should enact legislation to significantly increase the federal share of Medicaid funding for home- and community-based services to stabilize the direct support workforce.
- Congress should enact legislation that would fund federal grant programs to support the training, recruitment, retention and advancement of the direct support workforce.
- The Biden administration should expedite visa programs that ensure opportunities for aspiring Americans interested in joining the direct support workforce.
- States should establish systems that provide regular review of Medicaid reimbursement rates to ensure payments stay current with increasing costs of service delivery and safeguard access to quality home- and community-based services.
- State and federal agencies should collect and publicly report on measures related to workforce volume, stability and compensation, as well as systemic barriers to equity and the delivery of culturally competent services within the direct support workforce.
- Providers and advocates should seek out and engage in opportunities for stakeholder engagement and public comment.
“I have worked in disability services for over 20 years. The majority of the time, I’ve had to maintain a second job just to get by. Meanwhile, most of our DSPs, who bend over backwards to provide care, are oftentimes working two or possibly more jobs. The system is broken,” said Greta Robinson, Director of Community Living UCP South Carolina. “What’s heartbreaking is that the funding for HCBS is there, but Congress refuses to pass it. It’s time our elected officials leave their offices, visit our sites and try to walk a mile in our shoes: try to retain good workers on $13 an hour wages, try to keep day programs open with no capacity, try to make the impossible decision about which referrals to accept and which to turn away. We are in crisis, and it’s time our elected leaders work with us to make things right.”
The Case for Inclusion 2023 report, as well as comprehensive data for all measures tracked by the Case for Inclusion, can be found at https://caseforinclusion.org/resources/key-findings. The report includes data from seven key issue areas: Addressing a Workforce in Crisis, Promoting Independence, Promoting Productivity, Reaching Those in Need, Serving at a Reasonable Cost, Keeping Families Together, and Tracking Health, Safety & Quality of Life. The report assesses all 50 states and the District of Columbia by tracking 80 indicators of how well state programs are helping people with IDD live, work and engage in the community—rather than being in state-run institutions.
About ANCOR & the ANCOR Foundation
For more than 50 years, the American Network of Community Options and Resources (ANCOR) has been a leading advocate for the critical role service providers play in enriching the lives of people with intellectual and developmental disabilities. As the 501(c)3 charitable arm of ANCOR, the ANCOR Foundation exists to expand the commitment and capacity of providers and communities dedicated to improving quality of life for people with disabilities. For more information, visit ancor.org.
About United Cerebral Palsy
The mission of United Cerebral Palsy is to be the indispensable resource for people with cerebral palsy, Down syndrome, autism spectrum disorder and other neurodevelopmental disabilities. Founded in 1949, UCP has 56 affiliates (54 in the U.S. and two in Canada) that provide a wide range of services annually to more than 150,000 children and adults, including resources and referrals, advocacy, research, educational instruction, early intervention, physical therapy, job training, integrated employment, home and community based services, recreational opportunities and housing assistance. UCP also advocates for direct support professionals (DSPs) and other direct care workers. We believe all people with disabilities should be treated as equal members of an inclusive society so they can “live life without limits.”
Past Press Releases
- UCP Opens Research Grant Application Process / March 25, 2023
- UCP Statement on the passing of Judy Heumann / March 6, 2023
- Case for Inclusion 2023 Press Release / Feb. 28, 2023
- United Cerebral Palsy has received more than $2.3 million in charitable donations since October 2021
- UCP 2022 (virtual) Conference on Latinos with Disabilities begins Sept. 21
- UCP awards $80,000 in grants to fund four cerebral palsy research projects
- United Cerebral Palsy Statement on Uvalde Mass Shooting
- Actor/Advocate RJ Mitte, AbiliCorp CEO/Founder Neil Jacobson, featured speakers at UCP 2022 Annual Conference, May 3-4
- Actor RJ Mitte and activist Neil Jacobson, featured speakers at UCP 2022 Annual Conference, May 3-4
- Case for Inclusion 2022 Press Release / March 8, 2022
- Case for Inclusion 2021 Release – 2/24/21
- “Crisis Standards of Care” nationwide must consider the civil and human rights of people with disabilities – 7/21/20
- COVID-19 Impact on the Nation’s Disability Community Press Release – 5/05/20
- Coronavirus Press Release – 3/19/2020
- UCP offers support to Walmart with its greeters positions – 2/28/19
- UCP Statement on the passing of U.S. Sen. John McCain
- Special Needs Individuals At-Risk in Federal Detention Facilities 6/28/18
- UCP Letter to President Trump – 5/11/18
- Rosa M. Hernandez Press Release – 10/27/17