DOVER, Del. – On Tuesday, Lieutenant Governor Bethany Hall-Long released a statement following the House of Representatives’ passage of Senate Bill 55, legislation to create a new advisory body for Delawareans living with rare diseases.

Sponsored by Sen. Nicole Poore and Rep. Krista Griffith, Senate Bill 55 would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to treatment and care, fostering robust dialogue around research, resources, and best practices.

Under this bill, the council will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. There are approximately 7,000 known rare diseases, which can impact individuals in a variety of ways from lack of affordable and accessible treatment therapies to challenges with diagnosis and misdiagnosis.

“Delawareans living with rare diseases should never suffer in silence. This new advisory council will give patients, caregivers, and families a platform to address concerns and create a foundation for further innovation to create treatments and improve services,” said Lt. Governor Bethany Hall-Long, nurse and Ph.D. who led efforts to get the legislation introduced. “I am so thankful for the leadership of Sen. Poore and Rep. Griffith and the advocacy of the National Organization for Rare Disorders. Together, we can break down barriers and improve the quality of life for our neighbors suffering from rare diseases.”

It is estimated that 25-30 million Americans suffer from a rare disease. If signed into law, Delaware would join 26 other states across the nation to have established a Rare Disease Advisory Council. More than 90% of rare disease do not have an FDA-approved treatment, according to the National Organization for Rare Disorders (NORD). Challenges with treatment options combined with unsustainable medical costs can negatively impact the care of an individual with a rare disease.

“An estimated one in ten Americans is living with a rare disease, but many patients struggle to find knowledgeable health care providers with relevant expertise and access to necessary care and treatment for their complex condition. NORD is thrilled to see Delaware join the growing number of states looking to support their rare disease community by establishing a Rare Disease Advisory Council and we are so thankful to Senator Poore, Representative Griffith and Lt. Governor Hall-Long for their efforts to create an RDAC in Delaware,” said Heidi Ross, Vice President of Policy and Regulatory Affairs at the National Organization for Rare Disorders.

Senate Bill 55 now heads to Governor John Carney for his signature.

WILMINGTON, Del. – On Monday, Lieutenant Governor Bethany Hall-Long convened national and local experts, elected leaders, and community advocates in a first-of-its-kind summit discussing the state of Delaware residents’ behavioral and mental health. The inaugural day-long summit, 2023 Mental and Behavioral Health Summit: Pathways and Partnerships for a Stronger Delaware, comes amidst an ongoing national and state opioid crisis and a significant rise in the need for mental health treatment and services, a need made far worse by the pandemic and the vital gaps in access to care it caused.

“The emotional well-being of our families has never been more important. From Delawareans living with mental illness or substance use disorder to those whose families have been touched by trauma or suicide, ensuring people have the support they need demands a cradle to grave approach,” said Lt. Governor Bethany Hall-Long, Chair of the Delaware Behavioral Health Consortium. “This Summit provided an opportunity to bring leaders, experts, and impacted Delawareans together to address the root causes of these struggles, so our residents have the capacity to heal and thrive.”

Across the country, states are grappling with the fallout from COVID-19 impacting families, workforce needs, treatment, and more. The World Health Organization reported a 25% increase in the prevalence of anxiety and depression in the year following the pandemic. State data cites that close to 1 in 4 Delaware adults — 22.2% — reported symptoms of anxiety or depressive disorders between March 2020 and April 2023. According to the CDC, every 11 minutes in the United States we lose someone to suicide. And as the national opioid epidemic continues, Delaware recently reported its highest yearly overdose deaths in 2022.

The Delaware Behavioral Health Consortium, a national model, is a key action-agent that convenes community advocates, law enforcement, healthcare professionals and state leaders to tackle this issue head-on. In addition to spearheading Delaware legislation that created the nation’s first overdose system of care, the Consortium helped pass mental health parity legislation, and has advanced a holistic approach to care that emphasizes housing and food security and other social determinants of health.

“The Behavioral Health Consortium works tirelessly to create solutions that reduce stigma and support high-quality, personal prevention, treatment and recovery services for all Delawareans. Our residents deserve nothing less. I’m excited to see the future connections and collaboration this Summit nurtures,” said Alexia Wolf, Director of the Behavioral Health Consortium.

Panel discussions and featured speakers uplifted the voices of Delawareans and national expertise around data, policy, and the social determinants of health. Behavioral health isn’t in a silo; stable housing, affordable health care, food insecurity, and access to stable and well-paying jobs all impact a person’s recovery and resilience.

“Monday’s event is an important step forward in addressing the mental and behavioral health needs of Delawareans,” said U.S. Senator Tom Carper (D-Del.). “I am proud of the bipartisan legislation I co-authored last year that helps bring mental health resources into our schools, which builds upon the work we are doing right here in the state. This is an all-hands-on-deck effort to ensure the mental health care needs of all Delawareans are met with accessibility and compassion.”

“The mental health challenges being faced by our nation – the overdose epidemic, the high rates of suicide, the prevalence of depression and anxiety among people, especially young people – are significant,” said Tom Coderre, acting Deputy Assistant Secretary for Mental Health and Substance Use at the Substance Abuse and Mental Health Services Administration (SAMHSA). “As this crucial summit gets under way, know that the Biden-Harris Administration is prioritizing approaches to safeguard the mental health of Americans, to connect people to the evidence-based treatments and supports they need to find recovery.”

To close the event, Lt. Governor Hall-Long led a special fireside chat with The Kennedy Forum founder and former U.S. Representative Patrick J. Kennedy around strategies to enhance behavioral and mental health support, covering insurance parity, wraparound treatment solutions and more.

“Lt. Governor Hall-Long continues to be a strong ally and champion for progress in our mental health and substance use systems. I was glad to join her on Monday, share updates on The Kennedy Forum’s work to ensure mental health is treated as essential health, and learn more about the Lt. Governor’s Behavioral Health Consortium as a national model for this work,” said former U.S. Representative Patrick J. Kennedy (D-RI) and Founder of The Kennedy Forum.

To get connected with the Delaware Behavioral Health Consortium and the Lt. Governor’s Office, email alexia.wolf@delaware.gov or visit the Lt. Governor’s website.

WILMINGTON, Del. – Lt. Governor Bethany Hall-Long will host Delaware’s first summit spotlighting the social and economic importance of mental and behavioral health in Delaware on Monday, June 12. The 2023 Mental and Behavioral Health Summit: Pathways and Partnerships for a Stronger Delaware will bring together a variety of stakeholders including local and national thought leaders, community advocates, and government officials.  

As Delaware emerges from the COVID-19 pandemic and looks to the future, there is no better time to strategize, collaborate, and take a deep dive into the current state of mental and behavioral health. Recent data from the World Health Organization shows a 25% increase in prevalence of anxiety and depression in the year following the start of the pandemic, and one in five children will experience a mental disorder this year, according to the CDC. 

Featured panel discussions will highlight mental and behavioral health data, Delaware’s legislative and policy response to the behavioral health crisis, frontline work led by Delaware community advocates, and more. The Summit will close with a fireside chat with Lt. Governor Hall-Long and The Kennedy Forum founder and former U.S. Representative Patrick Kennedy around strategies to enhance behavioral and mental health support – from insurance parity to holistic treatment solutions.

Members of the public are welcome to register for the 2023 Mental and Behavioral Health Summit: Pathways and Partnerships for a Stronger Delaware at this Google Docs link. 

NOTE TO MEDIA: Reporters should RSVP to Jen Rini (jennifer.rini@delaware.gov) to attend the Summit. 

 2023 MENTAL AND BEHAVIORAL HEALTH SUMMIT: PATHWAYS FOR A STRONGER DELAWARE: MONDAY, JUNE 12, 2023 

WHAT:          Lt. Governor Bethany Hall-Long will host Delaware’s first summit spotlighting the social and economic importance of mental and behavioral health in Delaware on Monday, June 12. The 2023 Mental and Behavioral Health Summit: Pathways and Partnerships for a Stronger Delaware will bring together a variety of stakeholders including local and national thought leaders, community advocates, and government officials.  

WHO:             Lt. Governor Bethany Hall-Long, U.S. Senator Tom Carper, Former U.S. Representative Patrick Kennedy, Members of the General Assembly, Local and National Health Experts, Community Advocates

WHEN:          Monday, June 12, 2023, 9 a.m. – 3 p.m. 

WHERE:       Chase Center on the Riverfront, 815 Justison St., Wilmington, DE 19801 

Additional Information on the Delaware Behavioral Health Consortium

 The Delaware Behavioral Health Consortium has been recognized as a national model. The consortium brings together community advocates, law enforcement, healthcare professionals and state leaders to address this crisis and help impacted Delawareans and their families. The group coordinates listening sessions, works to reduce the stigma, ensures adequate resources, enhances data and policy, and more. Learn more on the Lt. Governor’s website.

Additional Panel Information

2023 Mental and Behavioral Health Summit: Pathways and Partnerships for a Stronger Delaware 

The Honorable Bethany Hall-Long  

Delaware Lt. Governor and Summit Convenor 

Goal: Led by Delaware Lt. Gov. Bethany Hall-Long, the summit is intended to convene local, state, regional, and national thought leaders, community advocates, government officials, business and labor leaders dedicated to elevating the social and economic importance of mental and behavioral health in Delaware. 

9:00 a.m. – 9:05 a.m.: Welcome and Opening Remarks: Alexia Wolf, Director, Delaware Behavioral Health Consortium 

9:05 a.m. – 9:15 a.m.: “What’s at Stake”: Lt. Gov. Bethany Hall-Long, Summit Convenor  

9:15 a.m. – 9:20 am: The Honorable U.S. Senator Tom Carper (D-DE) 

9:25 a.m. – 10:05 a.m.: Panel 1: Facts & Figures: Mental and Behavioral Health Data 

Overview: A discussion centered on data and research provided by local and national academic and mental health professionals. 

10:20 a.m. – 11:00 a.m.: Panel 2: Delaware United: How are DE State Agencies and Legislature Responding to Mental and Behavioral Health Crisis 

Overview: A discussion specifically related to policies and legislative actions taken in recent years by the Delaware legislature.  

Featured Speaker over Lunch: 11:15 a.m. – 11:30 a.m. – Tom Coderre, SAMSHA Acting Deputy Assistant Secretary will share his expertise and vision with the audience.  

12:00 p.m. – 12:40 p.m.: Panel 3: Joining Forces: How Labor and Business Leaders Can Work Together 

Overview: A discussion on labor and business leaders’ workforce challenges relating to the state’s mental and behavioral health crisis and how the two constituencies can collaborate with the government to find a solution. 

1:00 p.m. – 1:40 p.m.: Panel 4: On The Front Lines: The Voices of Community Leaders and Health Care Professionals 

Overview: A discussion highlighting the hard work and bravery of dedicated Delaware residents to improve mental and behavioral health in the state. 

2:05 p.m. – 2:35 p.m.: Armchair Discussion – The Path Forward: Highlighting Strategies to Enhance Behavioral and Mental Health Support in Delaware and Beyond 

Overview: A one-on-one discussion on parity, integrations between behavioral health and substance abuse, prevention and treatment solutions, and innovative technology solutions, creating strategic ways to address current issues and pave a new way forward.  

Participants: Lt. Gov. Bethany Hall-Long and the Honorable Former U.S. Representative Patrick Kennedy 

2:35 p.m. – 2:45 p.m.: Closing Remarks  

DOVER, Del. – Lt. Governor Bethany Hall-Long applauds the Senate’s passage of Senate Bill 55, which creates a new advisory body for Delawareans suffering from rare diseases. 

Senate Bill 55, sponsored by Sen. Nicole Poore and Rep. Krista Griffith, would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to the treatment and care of those suffering from one of the approximately 7,000 known rare diseases.

Passed overwhelmingly on Thursday, the bill creates a council that will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. It is estimated that 25-30 million Americans suffer from a rare disease. If signed into law, Delaware would join 26 other states across the nation to have established a Rare Disease Advisory Council. 

“It’s critical we do everything we can to make sure Delawareans suffering from a rare disease have access to the treatment they need and deserve,” said Lt. Governor Bethany Hall-Long, who led efforts to get the legislation introduced. “This advisory council will give patients, caregivers, and families a critical resource and more unified voice to removing barriers and improving access to quality care.” 

“Delaware families facing a rare disease experience incredible challenges, often starting with simply getting a correct diagnosis and ranging from finding specialists, therapies and medication to connecting with support groups who can provide them with the emotional encouragement that comes from people going through the same experience,” said Sen. Nicole Poore, vice chair of the Senate Health & Social Services Committee and prime Senate sponsor of Senate Bill 55. 

“Those families need a voice who can help to advocate for them, raise awareness about the unique issues they face and help our state to better meet their needs,” she said. “I want to thank Lt. Governor Bethany-Hall Long for her tireless support for creating the Delaware Rare Disease Advisory Council, and I want to thank my colleagues in the Senate for voting today to show some of Delaware’s most vulnerable residents that we have their back.” 

The National Organization for Rare Disorders (NORD) estimates that more than 90% of rare diseases do not have an FDA-approved treatment. The lack of treatment options combined with high out of pocket costs often lead to significantly diminished care for individuals with a rare disease.  

“Those who live with rare diseases face many hurdles, beginning with the great challenge of even finding a diagnosis for what are often debilitating, painful and life-threatening conditions. I’m hopeful that the work of this Advisory Council will give Delawareans greater access to specialists who can provide diagnoses and treatment; affordable access to therapies; and medication to treat rare diseases. I’m also excited for the opportunities this Advisory Council may present for research and development of new treatments for rare diseases,” said Rep. Krista Griffith. “I’m looking forward to passing this bill in the House.” 

Senate Bill 55 now heads to the House. 

Wilmington, Del. (June 6, 2023) – Five organizations in the State of Delaware will receive a total of $1,030,000 in federal grants from the National Endowment for the Arts, as part of the National Endowment for the Arts’ second round of funding, announced today.

“The National Endowment for the Arts is pleased to support a wide range of projects, demonstrating the many ways the arts enrich our lives and contribute to healthy and thriving communities,” said NEA Chair Maria Rosario Jackson, PhD. “These organizations play an important role in advancing the creative vitality of our nation and helping to ensure that all people can benefit from arts, culture, and design.”

In response to this generous support, Delaware Division of the Arts Director Jessica Ball said, “This significant investment is a testament to the immense talent and creative spirit that thrives in our vibrant arts community. The grant will undoubtedly empower these organizations to further enrich the cultural landscape of Delaware, fostering artistic excellence and accessibility for all residents. Together, we will continue to celebrate and support the arts, recognizing their profound impact on our society and the boundless opportunities they create for artistic expression and community engagement.”

The following Delaware arts organizations have received funding:

Delaware Art Museum (Wilmington, DE) will receive $40,000 to support an exhibition featuring work by members of the Rossetti family, active in both the Pre-Raphaelite and Aesthetic Movements of the 19th century.

Delaware Division of the Arts (Wilmington, DE) will receive $935,000 to support arts programs, services, and activities associated with carrying out the agency’s National Endowment for the Arts-approved strategic plan.

Delaware Shakespeare (Wilmington, DE) will receive $10,000 to support the Community Tour of a contemporary work adapted from a play by Shakespeare.

The Grand Opera House (Wilmington, DE) will receive $20,000 to support sensory-friendly performances for youth and their families.

Opera Delaware (Wilmington, DE) will receive $25,000 to support the premiere of “Fearless: the Story of Hazel Ying Lee and the Women Airforce Service Pilots” by composer and librettist Derrick Wang.

More information about the National Endowment for the Arts’ grant opportunities is available at arts.gov/grants. This section also includes resources for first-time and returning applicants as well as information on how to volunteer to be an NEA panelist.

The full NEA grant descriptions follow:

Grants for Arts Projects

Grants for Arts Projects (GAP) is the National Endowment for the Arts’ largest grants program for organizations. Matching grants range from $10,000 to $100,000, and are recommended for organizations in all 50 states, Puerto Rico, and the District of Columbia. In July 2022, 1,927 eligible applications were received requesting more than $98 million in FY23 support. This round, 1,130 projects are approved for funding totaling more than $31 million.

Project-based funding will support opportunities for public engagement with the arts and arts education, the integration of the arts with strategies that promote the health and well-being of people and communities, and the improvement of overall capacity and capabilities within the arts sector.

State and Regional Partnerships

Each year, approximately 40 percent of the NEA’s appropriated program funds are awarded to state arts agencies, regional arts organizations, and the national service organization to support the work of the states and regions. In total, up to $67.9 million is recommended for these partners in FY 2023, with up to $55.1 million of that total designated for State Arts Agencies.

State & Regional Partnership Agreement grants extend the NEA’s reach to even more communities, reflecting investments in locally-determined priorities, and translate national leadership into local benefit. To learn more about how the National Endowment for the Arts is impacting individual states and regions of the country, select a state or territory on the state impact page or visit the regional map.

About the National Endowment for the Arts
Established by Congress in 1965, the NEA is the independent federal agency whose funding and support gives Americans the opportunity to participate in the arts, exercise their imaginations, and develop their creative capacities. Through partnerships with state arts agencies, local leaders, other federal agencies, and the philanthropic sector, the NEA supports arts learning, affirms and celebrates America’s rich and diverse cultural heritage, and extends its work to promote equal access to the arts in every community across America. For more information, visit www.arts.gov.

About the Delaware Division of the Arts
The Delaware Division of the Arts, a branch of the Delaware Department of State, is committed to supporting the arts and cultivating creativity to enhance the quality of life in Delaware. Together with its advisory body, the Delaware State Arts Council, the Division administers grants and programs that support arts programming, educate the public, increase awareness of the arts, and integrate the arts into all facets of Delaware life. Funding for Division programs is provided by annual appropriations from the Delaware General Assembly and grants from the National Endowment for the Arts, a federal agency. For more information about the Delaware Division of the Arts, visit arts.delaware.gov or call 302-577-8278.

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Contact: Andrew Truscott, Program Officer, Marketing and Communications

302-577-8280, andrew.truscott@delaware.gov

The Delaware Division of the Arts, a branch of the Delaware Department of State, is dedicated to cultivating and supporting the arts to enhance the quality of life for all Delawareans. Together with its advisory body, the Delaware State Arts Council, the Division administers grants and programs that support arts programming, educate the public, increase awareness of the arts, and integrate the arts into all facets of Delaware life. For more information about the Delaware Division of the Arts, visit arts.delaware.gov or call 302-577-8278.