Ann Cameron Caldwell Appointment Connects The Arc with Academia

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Ann Cameron Caldwell talks about the Autism Now center at The Arc's 2010 Convention.

The Arc’s very own Research and Innovations Officer, Ann Cameron Caldwell, Ph.D., was appointed as an affiliated research assistant professor at the University of Illinois’ Department of Disability and Human Development (DHD) in the College of Applied Health Sciences.

This honorary appointment at Dr. Caldwell’s alma mater will not only allow her to pursue more formalized research relating to individuals with intellectual and developmental disabilities but will greatly enhance The Arc’s ability to generate new knowledge via research. And as Ann Cameron’s star rises in the academic community, the light will reflect well on The Arc and it’s new Autism NOW resource center, which she heads under a large federal grant.

The Department on Disability and Human Development is part of the Association of University Centers on Disabilities (AUCD), hosts many federally-funded programs including the Rehabilitation Research and Training Center on Aging with Developmental Disabilities. Also, it offers one of the premiere doctorate programs in Disability Studies.

“This is truly an honor, and I look forward to advancing efforts to better understand the needs of and solutions for people with intellectual and developmental disabilities and their families,” stated an always-humble Caldwell, who remains fully engaged in her position at The Arc. Pat yourself on the back, Ann Cameron! This is something truly special.

The Arc Receives ACF Award of $1.87 million for National Autism Resource and Information Center

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc would receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.

“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network. We are proud to have the opportunity to launch Autism NOW, a much needed resource. It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

For deep policy expertise in areas of autism, family support, health care implementation, and aging, partners incude Brandeis University’s Heller School of Public Policy and the National Council on Aging (NCOA). The Arc has engaged a national dissemination team that will connect efforts to key stakeholders in every state and territory in the United States, including the National Association of Councils on Developmental Disabilities (NACDD), National Disability Rights Network (NDRN), Association of University Centers on Disabilities (AUCD), the National Military Family Association (NFMA), National Council on Independent Living (NCIL), and the American Association on Intellectual and Developmental Disabilities (AAIDD). Other key autism organizations will also be included in the Center’s activities.

The project will be led by Ann Cameron Caldwell, Ph.D., the Chief Research and Innovations Officer for The Arc and Tonia Ferguson, Special Projects Director.  “The new National Autism Resource and Information Center will fill a great need in the autism community by providing high-quality resources and information on community-based services and interventions for people with ASD and their families.  The Arc understands the challenges that families face; and we also recognize the vast contributions that people with ASD and other intellectual and developmental disabilities make to our societies and communities,” Caldwell said. “We are proud to have people that identify as having ASD or other intellectual and developmental disabilities (self-advocates) as full partners leading and implementing this initiative.”

“Autism is a heart-wrenching condition that presents special challenges for many families,” said HHS Secretary Kathleen Sebelius. “We want families to know that we are listening to them, and
the release of this grant award, brings us one step closer to providing the resources needed to improve the quality of life for people with ASD and other developmental disabilities.”

“People with ASD and other developmental disabilities face significant challenges in accessing the supports they need,” said Commissioner Sharon Lewis of ADD. “This new center will serve to connect people with ASD and their families to services and activities that promote self-determination, independence, and inclusion in the community.”

The Arc’s Disability Survey Focuses On Military Families

Washington, DC – The Arc, a national organization that supports individuals with intellectual and developmental disabilities (I/DD) and their families is engaging military families connected to individuals with I/DD to determine their disability needs through a national survey. The Arc is partnering with the National Military Family Association (NFMA) and other military channels to distribute a special version of The Arc FINDS (Family and Individual Needs for Disability Supports) survey to military families who have a family member with a disability.

The Arc FINDS (Family and Individual Needs for Disability Supports) is a free, online survey designed to tap into the knowledge and perspectives of families and individuals with disabilities on issues which arise across an individual’s life span. FINDS has been in the field since late July and already has more than 4,500 respondents, which makes it one of the largest single collections of perspectives from individuals and families connected to intellectual and developmental disabilities in the history of the field. Results will provide greater understanding about what disability-related services and supports are being received currently, where gaps exist, and what new supports may be needed from the military family perspective.

“Reaching out to military families through The Arc FINDS survey increases the meaningful involvement of populations we serve in determining what services are provided and our success rate in delivering those services. We have much to gain from the perspective of military families when you consider the diversity of the force and the unique challenges these families face while serving our country,” said Peter V. Berns, CEO of The Arc.

Survey questions cover areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics. It is written to allow for both the perspective of individuals with I/DD, as well as their parents/caregivers. It also allows for the differences in service and supports required at different stages of life.

To access the online survey, go to: www.thearc.org and link to the survey “Military Families: Click Here.” Please direct questions to Ann Cameron Caldwell, Chief Research and Innovations Officer at Caldwell@thearc.org.

The Arc Launches National Disability Needs Survey

FINDSFamily and Individual Needs for Disability Supports

Washington, DC – As we pause to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA), The Arc recognizes that there has been significant progress made on behalf of people with disabilities. There is more still to be done, however, and The Arc is initiating a national effort to tap into the knowledge and perspectives of individuals and families within the intellectual and developmental disabilities (I/DD) community.

Our goal is to assist the sector in determining needs for services and supports. This survey—The Arc FINDS (Family and Individual Needs for Disability Supports) —will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

The Arc FINDS launches July 21 and will be accessible until September 1 to all families and individuals with I/DD, both in and outside of The Arc’s chapter network. Dissemination of the survey to a broad range of disability and caregiving networks across the country and throughout our allied organizations will maximize the survey’s reach and findings.

“The Arc FINDS will capture the perceptions of individuals with intellectual and developmental disabilities of all ages, as well as those of their families and caregivers. The results will provide
us with a much-needed candid and current view on issues concerning the needs for disability supports across the life span,” said Peter V. Berns, CEO of The Arc.

“We are committed to finding a meaningful way to involve the population we serve in determining the services provided and gauging the successful delivery of these services—just as any business would involve its consumer network through an open market-research style survey. We’re thrilled to be promoting FINDS in collaboration with other top disability organizations focused on those with intellectual and development disabilities,” Berns said.

Ann Cameron Caldwell, Chief Research and Innovations Officer for The Arc, is directing the survey and its evaluation. “The information gleaned from the survey will help identify—and document—nationally, by state and locally what families want in terms of needed services and supports. This information, including personal stories, will be valuable in informing and supporting ongoing program development, advocacy and policy work,” said Dr. Caldwell, who is the parent of a teenager with Down syndrome.

Questions are being asked in areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics. It is written to allow for both the perspective of individuals with I/DD, as well as their parents/caregivers. It also assumes for the differences in service and supports required at different stages of life.

Options are in place for respondents to contribute personal stories about their experiences with contact information to support advocacy efforts here in Washington. The vehicle for collection will be an online survey that respondents can link to electronically through The Arc’s website: www.thearc.org. There is no cost to participate and all responses will be confidential; it will take respondents about 30 minutes to complete the survey. The survey may also be found at: http://www.surveymonkey.com/s/TheArcFinds2010

This information will be shared initially at The Arc’s National Convention (November 3-6, 2010 in Orlando, Florida), as well as publicly on The Arc’s website.

If you have any questions, please contact Laura Hart, Director, Media Relations, at 202.534.3712 or at hart@thearc.org.

Ann Cameron Caldwell Joins The Arc to Lead Philanthropic & Research Initiatives

Washington, D.C. – Ann Cameron Caldwell, Ph.D., has joined The Arc of the United States as the new Chief Research and Innovations Officer. Dr. Caldwell will be responsible for advancing The Arc’s mission at national and local levels through leading innovative growth and outcome opportunities in partnership with public agencies and philanthropic organizations, and implementing effective organizational metrics and knowledge management practices.

“Ann Cameron is widely respected in the disabilities field; she brings a wealth of experience in forging partnerships with philanthropic organizations, public agencies and others on behalf of
people with disabilities. Her background in these areas and in academia will serve to strengthen and support The Arc’s continuing growth and momentum,” said Peter V. Berns, CEO of The Arc.

Prior to joining The Arc, Dr. Caldwell was Assistant Vice President for Grant Development at Easter Seals, Inc., a post she held since early 2007. In this role, she led grant development activities for the national headquarters in federal and foundation arenas, and contributed to the organization’s strategic development and knowledge management efforts.

Previously, Dr. Caldwell was an independent consultant to nonprofit organizations in strategic development and program evaluation. She obtained her doctorate in Disability Studies from the
University of Illinois at Chicago in 2005, where she also was project coordinator of the Rehabilitation and Research Training and Technical Assistance Center on Aging with Developmental Disabilities, funded by the National Institute of Disability Rehabilitation Research. Dr. Caldwell received her Master’s degree from The University of Chicago in 2000. She is also the parent of a teenager with Down syndrome.

The Arc is the world’s largest community-based organization of and for people with intellectual and developmental disabilities. It provides an array of services and support for families and
individuals and has more than 140,000 members with approximately 730 affiliated state and local chapters across the nation. The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.