Current Center News

The Boggs Center Shares Annual Report for Fiscal Year 2020

Each year as I write to share the contributions of The Boggs Center and our collaborations with all of you, I appreciate what we have been able to accomplish together and also am always aware of how much more there is to be done. Looking back on the past year has, for all of us, been a very different and difficult experience. Little in any of our collective experience has prepared us for the loss and disruption in every family and community, things that have been experienced even more devastatingly in the lives of people with disabilities, their families, and the supporters and systems that work on their behalf.

From July 2019 up to early March, we continued to provide the educational programs, technical assistance to communities and systems, research and information that have been the hallmark of our partnerships and mission. In March, with the onslaught of the pandemic, all our lives changed.

This report reflects the dedication and efforts of everyone at The Boggs Center in the ways that, as individuals and as an organization, we have worked to convert our programs and activities in virtual and remote formats that continue to support the disability community while keeping everyone safe. We are gratified to have so many people attend the DD Lecture Series virtually, utilize our new "Just in Time Webinar Series" and to have been able to teach our fellows, students, and community trainings remotely. Developing and curating resources on COVID-19 targeted to people with disabilities, their families, and caregivers has been one of our highest priorities. We are gratified that we have been able to involve medical students from Rutgers Robert Wood Johnson Medical School in these processes.

In listening sessions with our federal DD Act partners, Disability Rights New Jersey and the New Jersey Council on Developmental Disabilities, the expressions of concern in the community, as well as our Consumer Advisory Council, have guided our actions and direction. Please let us know what other things would support our community.

In the disability community, we have always been aware of how interdependent we all are. Our collective efforts to support public health and safety measures, as all our efforts at The Boggs Center, are devoted to enhancing the common good. For all those who have lost loved ones, are struggling with illness, separation from services and economic loss, our hearts are with you.

We strive for ways to support our community now in the amidst of the pandemic and looking ahead to the time when we can be in each other's presence and continue to create support and opportunities for people with disabilities, families, and those who work on their behalf.

With warm good wishes,

Deborah M. Spitalnik, PhD
Professor of Pediatrics and Family Medicine and Community Health
Executive Director, The Boggs Center and NJLEND

View The Boggs Center's Annual Report for Fiscal Year 2020

Deborah M. Spitalnik, PhD Honored with Family Resource Network’s Leadership Impact Award

Deborah M. Spitalnik, PhD, Professor of Pediatrics and Family Medicine and Community Health, founding Executive Director of The Boggs Center on Developmental Disabilities, and Director of New Jersey's Leadership Education in Neurodevelopmental and Related Disabilities Program, was honored with the Family Resource Network’s (FRN) Leadership Impact Award at its 2020 Impact Award Virtual Event on November 12.

The FRN Impact Awards honor the meritorious impact that its partners, supporters, and stakeholders have had in advancing its mission to offer individuals and their families with continuing needs the greatest opportunities, resources and services to support a full and happy life. Dr. Spitalnik was awarded for her leadership at The Boggs Center and impact on the lives of people with disabilities in New Jersey and across the country.

Colleen McLaughlin, MEd, Appointed to Association of University Centers on Disabilities’ Board of Directors

Colleen McLaughlin, MEd, Associate Director of The Boggs Center on Developmental Disabilities, was appointed to serve as an At-Large Member on the Board of Directors for the Association of University Centers on Disabilities (AUCD). AUCD’s Board of Directors addresses emerging trends and issues, and facilitates communication across and beyond the national network of university-based interdisciplinary programs it promotes and supports, including University Centers of Excellence on Developmental Disabilities (UCEDDs) and Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. Ms. McLaughlin has been connected to the AUCD network for nearly two decades, beginning as a UCEDD student trainee, and has grown professionally through a number of positions at two AUCD Network Member Centers with increasing responsibilities during that time. As an At-Large Member of the Board, Ms. McLaughlin looks forward to partnering with colleagues from across the country to increase collaborative opportunities and expand the reach of UCEDDs and LENDs.

Fight the Flu: It's Important to the Disability Community!

This year, getting a flu vaccine is more important than ever. The flu shot is the best way to protect against the flu. It reduces the risk of serious flu-related illness requiring care in hospitals already strained by the COVID-19 pandemic.

The Boggs Center on Developmental Disabilities has developed new resources to explain the importance of the flu shot to the disability community and help people with intellectual and developmental disabilities understand what to expect when getting the shot.

Fight the Flu: It's Important to the Disability Community explains why getting the flu shot is important to the disability community and provides recommendations and resources from the Centers for Disease Control and Prevention (CDC).

Fight the Flu: It's Important to the Disability Community (English) (Spanish)

Getting a Flu Shot: A Social Story for People with Intellectual and Developmental Disabilities helps readers understand why it's important to get a flu shot and what to expect when getting the shot. Direct Support Professionals, family members, and others that provide support can use this social story to prepare people with intellectual and developmental disabilities for getting the flu shot by printing or sharing with the person on a computer, tablet, or smart phone.

Getting a Flu Shot: A Social Story for People with Intellectual and Developmental Disabilities (English) (Spanish)

New Cultural & Linguistic Competence Resources

Cultural & Linguistic Competence Resources Web Page

The Boggs Center on Developmental Disabilities has created a Cultural & Linguistic Competence Resources page on our web site as part of our commitment to promoting cultural and linguistic competence, advancing racial justice, and addressing disparities across health, education, and human service systems. Our Cultural & Linguistic Competence Resources page highlights some of The Boggs Center's efforts to address disparities in access to care and services for diverse people with disabilities and their families, and contains a selection of information and resources from New Jersey and across the country that offer a starting point for understanding issues of inequality and intersectionality, including:

• Boggs Center resources, community education, and research
• New Jersey resources
• National resources on cultural competence and racial equity, intersectionality, implicit bias, and plain language and accessible resources

Cultural Competence Resource for Support Coordinators

The Boggs Center on Developmental Disabilities is pleased to share Providing Culturally Competent Support Coordination Services. This resource provides an overview of culture, describes the Support Coordinator's role in providing culturally competent services, and offers planning strategies for working with culturally and linguistically diverse populations.

New Resource on Voting in the 2020 General Election

On Tuesday, November 3rd, voters will choose the: U.S. President, all members of New Jersey’s House of Representatives, 1 U.S. Senate seat, and other local representatives. To prevent the spread of COVID-19, most voters in New Jersey’s General Election will vote by mail.

Voting in New Jersey’s 2020 General Election, a 2-page resource developed by The Boggs Center on Developmental Disabilities, Disability Rights New Jersey, and the New Jersey Council on Developmental Disabilities provides step-by-step information to help people with intellectual and developmental disabilities vote in the 2020 General Election by mail or at the polls.

Voting in New Jersey's 2020 General Election (English) (Spanish)

Need more information about voting?

Read Voting: It’s Your Right for more information about voting and voting rights for people with intellectual and developmental disabilities. Voting: It’s Your Rightwas developed by The Boggs Center on Developmental Disabilities in collaboration with Disability Rights New Jersey and the New Jersey Council on Developmental Disabilities. The updated 4th edition is available electronically in English and Spanish. 

Stay up-to-date on changes to the voting process related to COVID-19 by contacting your county's election officials or visiting the New Jersey Division of Elections 2020 New Jersey Voter Information Portal.

Registration is Open for the Fall 2020 Developmental Disabilities Lecture Series

The Boggs Center’s Developmental Disabilities Lecture Series is a community and continuing education program provided for professionals, policymakers, individuals with disabilities, and family members to enhance their knowledge and skills in innovative approaches and state of the art practices for people with developmental disabilities. The Fall 2020 Developmental Disabilities Lecture Series features national experts on the Americans with Disabilities Act, post-secondary education, cultural and linguistic competence, and self-determination.

The Americans with Disabilities Act: Disclosure and Reasonable Accommodations in Employment
Presented by Barry Whaley, MS l Friday, September 25, 2020 l 10:00 AM - 12:00 PM l Webinar

• Higher Education Opportunities for Students with Intellectual and Developmental Disabilities
  Presented by Debra Hart, MS l Friday, October 2, 2020 l 10:00 AM - 12:00 PM l Webinar
  

• The Essential Role of Cultural and Linguistic Competence in Advancing Equity
  Presented by Tawara D. Goode, MA l Friday, October 23, 2020 l 10:00 AM - 12:00 PM l Webinar

• Self-Determination, Inherent Dignity, and Full Participation
  Presented by Michael Wehmeyer, PhD l Friday, October 30, 2020 l 10:00 AM - 12:00 PM l Webinar

The webinars are free of charge. Space is limited and advanced registration is required.
Learn more and register for the Developmental Disabilities Lecture Series

The Boggs Center (NJ UCEDD/LEND) Hosts First NJLEND Alumni Leadership Symposium, “Leadership in a Time of Crisis: The COVID-19 Pandemic”

On August 7th, The Boggs Center on Developmental Disabilities at Rutgers Robert Wood Johnson Medical School Department of Pediatrics hosted the first Leadership Education in Neurodevelopmental Disabilities - NJLEND Alumni Leadership Symposium. This virtual symposium, “The Challenge of Leadership in a Time of Crisis: The COVID-19 Pandemic” was a collaboration with systems across the state and RWJMS to address the COVID-19 pandemic and its impact on children and young adults with Autism and other early onset disabilities and their families.

The event featured a panel of professionals representing leadership from multiple sectors across New Jersey. Panelists Patricia Whitley-Williams, MD, Professor and , Director of the Division of Allergy, Immunology and Infectious Diseases, and Associate Dean for Diversity and Inclusion, Rutgers RWJMS; Mollie Greene, MA, Assistant Commissioner of the Children’s System of Care, NJ Department of Children and Families Jennifer Langer Jacobs, MCP, Assistant Commissioner of the Division of Medical Assistance and Health Services, NJ Department of Human Services; and Peggy McDonald, EdD, Assistant Commissioner of Student Services, NJ Department of Education were asked to identify the challenges, successes, and disparities revealed in their respective fields by the COVID-19 pandemic. They also imparted advice and lessons learned to former LEND fellows who represented the disciplines of social work, medicine, family, nursing, psychology, public health, and developmental and behavioral pediatrics. Afterward, NJLEND Alumni, many of whom are now working as health and allied professionals across New Jersey, also engaged in peer breakout sessions where they were able to share and troubleshoot their own challenges through interdisciplinary group participation. This event was made possible with support from the Association on University Centers on Disability and the Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities, which is funded through a Cooperative Agreement (Grant #UA5MC11068) with HRSA’s Maternal and Child Health Bureau.

The Boggs Center’s NJLEND program, part of a national provides graduate‐level interdisciplinary training aimed at preparing the next generation of health and allied health leaders to address the needs of children and young adults with autism spectrum disorder (ASD), related developmental disabilities, health disparities, children with special health care needs and other maternal and child health populations. Funding for LEND programs is authorized by the federal Autism CARES Act and is administered through the Maternal and Child Health Bureau of the Health Resources and Services, US Department of Human Services.

Get Ready for the 2020 General Election with Voting: It's Your Right

The General Election on Tuesday, November 3rd, 2020 will determine the next President of the United States, as well as New Jersey Senators, Congressmen / Congresswomen, and county and local officials.

Get ready for the 2020 General Election by reading Voting: It's Your Right, a guide about voting rights and the voting process in New Jersey developed by The Boggs Center on Developmental Disabilities in collaboration with its Developmental Disabilities Network Partners, Disability Rights New Jersey and the New Jersey Council on Developmental Disabilities.

The recently updated 4th Edition, available in English and Spanish, provides readers with information on:

• Registering and preparing to vote
• Options for voting by mail and in-person
• Voting rights and accessibility
• Contacting election officials with questions

Important dates to remember:

• October 13, 2020 - Voter Registration Deadline for General Election
• October 27, 2020 - Deadline to apply for a Mail-In Ballot by Mail for General Election
• November 2, 2020 - Deadline for submitting Mail-In Ballot Applications in-person (before 3:00 pm)
• November 3, 2020 - General Election (if you are voting by Mail-In Ballot, it must be received by the Post Office or submitted in-person to your County Board of Elections by this date)

Stay up-to-date on changes to the voting process related to COVID-19 by contacting your county's election officials or visiting the New Jersey Division of Elections' COVID-19 Election Resources webpage.

Reflection on the 30th Anniversary of the Americans with Disabilities Act

“Injustice anywhere is a threat to justice everywhere”
Martin Luther King, Jr.

July 26, 2020 is the 30th Anniversary of the Americans with Disabilities Act, the landmark civil rights legislation for people with disabilities. As we mark this day with gratitude to all who advocated and worked tirelessly for its passage, we must express our gratitude to John Lewis for his contributions to the Civil Rights Act of 1965, signed into law by President Lyndon Johnson. Addressing racial civil rights provided the framework and template upon which the ADA was structured. We know that although both laws have made fundamental changes in our society, we have yet to fully realize the civil and human rights of all people.

The ADA became law when it was signed by President George H.W. Bush, on a beautiful, sunny day at a White House Ceremony, pictured here. The joy and majesty of the day, the realization of so much hard and intense advocacy and sacrifice by so many people with disabilities and their allies was for me, enriched by the serendipity of waiting to go through White House Security, standing next to Fred Schroeder, then the Director of the Division of Vocational Rehabilitation in New Mexico. As we moved through the entry check and throughout the ceremony, the privilege of being able to describe to Fred, who is blind, the visual elements of the day, contributed to that day and the vividness of embedded memory, deeply treasured to this day so many years later.

Justin Dart, seen here with his ubiquitous hat, a reminder of his Texas roots, is considered to be the “Father of the ADA.” He and his wife Yoshiko, deeply influenced by Gandhi, always acted on the principle “find your own truth and live it.” In 1988, Justin Dart and Elizabeth M. Boggs, for whom The Boggs Center on Developmental Disabilities is named, were appointed to chair the Congressional Task Force on the Rights of Americans with Disabilities.” The Task Force’s strategy to gather direct accounts from people with disabilities on the discrimination they had experienced, is widely believed to be the final impetus for the many years’ long struggle to get the ADA passed and become the law of the United States.

Many of the changes the ADA has created are visible in the built environment, in telecommunications, and in public accommodations. The ADA is the basis of the 1999 Olmstead Supreme Court decision, recognizing community services and supports as a public accommodation, and creating the standard that unnecessary segregation in congregate institutions is a form of discrimination. Over time, we have seen attacks on the ADA, through legislation and court decisions, attempting to mitigate the rights of people with disabilities. The employment of people with disabilities, a cornerstone of the ADA, has made some difference in preventing discrimination, yet most people with disabilities remain unemployed or underemployed.

At this time in our nation’s history, as the COVID pandemic is ravishing the world disproportionately affecting people of color and people with disabilities and the imperative to address the racial injustice in our society can no longer be ignored, we are called, in the words of Justin Dart, to practice “[T]he politics of principle, solidarity, and love.”

Rutgers School of Management and Labor Relations’ Professors Douglas Kruse and Lis Schur, have pointed out that when you combine the number of people with disabilities and the number of people who live with a family member with disabilities, if galvanized could represent a voting block approaching 28% of the electorate. Turnout of voters with disability is 6% lower than other parts of the electorate, much of which can be attributed to inaccessibility of many polling places.

Let us celebrate and preserve the ADA and the civil and human rights of all people by heeding Justin Dart’s words: “get into politics as if your life depended on it. It does.”

Deborah M. Spitalnik, PhD
Executive Director, The Boggs Center and NJLEND
July 26, 2020

AUCD Releases Video Celebrating the 30th Anniversary of the ADA

In celebration of the 30th Anniversary of the Americans with Disabilities Act (ADA) on July 26, 2020, the Association of University Centers on Disabilities released a brief video featuring guests reflecting on the ADA. Guests interviewed by Liz Weintraub include Deborah M. Spitalnik, PhD, The Boggs Center; Aaron Combs, Walmart; Neil Romano, National Council on Disability; Rachel Mueller, Advocate; Shelly Christensen, Author; Senator Tammy Duckworth; and Tawara Goode, Georgetown University. AUCD’s Tuesdays with Liz is a weekly video series highlighting current issues in disability policy.
Watch the video

New Resource on Voting in New Jersey’s 2020 Primary Election

There will be changes to the voting process for this year’s Primary Election to keep people healthy and safe from COVID-19. New Jersey’s Primary Election has been postponed to July 7th and most people will Vote-By-Mail. This one-page resource developed by The Boggs Center on Developmental Disabilities, Disability Rights New Jersey, and the New Jersey Council on Developmental Disabilities provides information for people with developmental disabilities about options for voting in the 2020 Primary Election.

Caroline Coffield, PhD, Honored with Distinction of Fellow of the American Association on Intellectual and Developmental Disabilities

Caroline Coffield, PhD, Assistant Professor of Pediatrics at Rutgers Robert Wood Johnson Medical School, Director of Pre-service Training at The Boggs Center on Developmental Disabilities, and Training Director of NJLEND, was honored with the distinction of Fellow of the American Association on Intellectual and Developmental Disabilities (AAIDD). The designation of Fellow is conferred after an individual has at least 7 years of continuous membership in AAIDD, with an established record of participation in the professional and business affairs of the Association, and is judged to have made a meritorious contribution to the field of intellectual disability. A member of AAIDD since 2008 and Co-chair of its Health and Wellness Interest Network since 2015, Dr. Coffield’s contributions to program development, improvement of service systems, teaching, and research have benefitted people with intellectual and developmental disabilities in New Jersey and their families.

Margaret Gilbride, JD, CT, Elected President of National APSE - the Association of People Supporting Employment First

Margaret Gilbride JD, CT, Assistant Professor of Pediatrics at Rutgers Robert Wood Johnson Medical School and Director of Transition and Employment at The Boggs Center on Developmental Disabilities, was elected President of National APSE - the Association of People Supporting Employment First. She began her term as President of the National APSE Board of Directors on June 16, 2020. Margaret Gilbride also serves as President of the New Jersey chapter of APSE. APSE is the only national organization with a focus exclusively on inclusive employment and career advancement opportunities for individuals with disabilities.

The Boggs Center’s Commitment to Racial Justice

“In just three months, a microscopic particle has laid bare human mortality", Elizabeth Dias wrote in the New York Times on June 7, 2020, of the coronavirus. In the 8 minutes and 46 seconds that a policeman knelt on the neck of George Floyd and ended his life, the racism of the United States was laid bare. The killings of George Floyd, Ahmaud Arbery, Breonna Taylor, and countless others, and the disproportionate deaths of black people due to COVID-19, are inextricably linked as vivid and wrenching examples of systemic racism, discrimination, and inequity. The Black Lives Matter movement and on-going demonstrations for justice challenge us to address racism and discrimination directly, educating and examining ourselves, evaluating our work, and empathizing with the pain and fear that is continually experienced by black colleagues, friends, and those we teach and serve.

As a program dedicated to promoting full participation in all aspects of community life, we know that racism and other forms of discrimination intersect with disability. We are painfully aware that premature births and
maternal mortality are disproportionately high in the black community; that young black children are more likely than their white peers to be diagnosed or classified as having emotional or behavioral disorders rather than developmental disabilities and more likely to be expelled from school, even in pre-school; that disabilities are diagnosed at later ages in children from black and other minority communities, and that they are less likely to have access to specialty care than their white counterparts and more likely to be given medication rather than treatment; and that the persistent income inequality between black and white families is heightened when a black family has a child with a disability.

The Boggs Center is committed to promoting and advancing racial justice and cultural and linguistic competence. We welcome those who wish to collaborate in creating equity and justice. We take on this work with an urgency of purpose, the necessity of looking inwardly and outwardly, and with open hearts. In this work and all we do we will heed the words of James Baldwin:

“The moment we cease to hold each other,
the moment we break faith with one another,
the sea engulfs us and the light goes out.”

June 2020

Robert Wood Johnson Medical School