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Periodically, The Arc of New Jersey receives requests to disseminate information regarding surveys and research studies focused on intellectual and developmental disabilities and related topics. It is the policy of The Arc of New Jersey to post information about these surveys and research studies on this page, enabling visitors to click on the related links if they are interested in participating. Only surveys and studies which are sponsored by an accredited educational authority or nationally recognized research entity, and/or approved by an Institutional Review Board (IRB) will be posted. Posting on this page does not indicate endorsement of the study, survey or researcher by The Arc of New Jersey. Participation in a survey or research study is at the discretion of the individual.

I/DD Provider Survey on Self-Directed Services and Supports

As services for people with intellectual and developmental disabilities become more individualized and self-directed, provider agencies are making the switch to more community-based, person-centered supports. While may providers have successfully transitioned to self-directed services, many others still face internal and system-wide barriers limiting their capacity to change.

The Spark! Initiative, an Optum supported initiative, is conducting a nationwide survey of professionals who work with adults with intellectual and developmental disabilities to better understand how to support service agencies that are navigating the shift to self-directed services. Please click on the Link below for more information and to participate in the survey!

Survey Link: Self Directed Services and Supports

If you work for an agency that directly provides services and supports to people with I/DD: please follow the link below to fill out the survey. Please also forward this email to others in your organization who may be interested in responding. We would like to hear the perspectives of all provider agency employees. If you do not work for an agency that directly provides services and supports to people with I/DD: please consider forwarding this link to providers who may be interested in responding.

This survey will take about 30 minutes to complete. After completing the survey, you can enter in a drawing to receive free registration to attend a national conference for service providers. Any personally identifying information that is asked in this survey or used to contact you (such as email and agency name) will be kept confidential. The information being collected in this survey will not be used to evaluate the performance of your agency. Your individual responses will remain private while adding to the overall understanding of supports and barriers that agencies face.

This research is funded by Optum, developed by the research team at the National Leadership Consortium on Developmental Disabilities, and directed by the Spark! Initiative. The Spark! Initiative is comprised of representatives of more than 25 organizations focused on developing a variety of resources for the general public to support and empower adults with intellectual and developmental disabilities (I/DD) to live a self-directed life. Optum developed the Spark! Initiative to bring together leaders in government, nonprofits, and private sectors to discuss solutions to better support people with intellectual and developmental disabilities. 

Any questions, comments or concerns? Please email

Quality of life among caregivers of individuals with intellectual and/or developmental disabilities and dementia

Be a part of a research study investigating experiences and quality of life among caregivers of individuals with both intellectual and/or developmental disabilities and dementia. The purpose of this study is to examine the experiences of caregivers and caregivers’ quality of life. To be included, you must be a caregiver of an individual with both an intellectual and/or developmental disability and dementia.

If you meet this criteria, you are eligible to participate in this study. Interested participants will be entered into a raffle to receive a $20 gift card. The study will be conducted using an online survey. For interested participants, a follow up interview may be conducted over the phone or in-person to gather more information regarding the experiences and family quality of life.

If you are interested in participating, please visit the following link:

Or contact:
Christina Marsack, Assistant Professor, Eastern Michigan University

Do You Have a Disability or Provide Support to a Loved One with a Disability? Have You Worked in New Jersey, California, New York, or North Carolina?

If you answered “Yes”, researchers need to hear from you!

The Arc of the United States and the National Center for Children in Poverty at Columbia University are inviting people who live and work in New Jersey, New York, California, and North Carolina to participate in a study on paid family and medical leave and disability. The goal of the study is to look at how workers with disabilities and families that include people with disabilities use, need, and can benefit from paid family and medical leave programs.  These are programs that allow people to take time off work and receive full or partial pay to welcome a new child or baby, to address their own serious medical condition, or to care for a family member experiencing a serious medical condition.

To participate, you must have worked in New Jersey, New York, North Carolina, or California in the past two years AND be a worker with a disability age 18 or older, a worker who is raising a child with a disability, or a worker who provides primary and frequent support to an adult family member with a disability.

The study will involve and initial screening call or email, and, if eligible, and interview by video conferencing or phone that will take approximately 40 minutes.  Reasonable accommodations will be provided on request.  Participants who complete the interview will receive a $20 gift card in thanks.

How to Participate
Call 929-900-5398 or send an email with “The Arc” in the subject line to

Contact Suma Setty, Research Coordinator at

Research study of the experiences of fathers of children and youth with complex disabilities (ages 3-21)

Children with complex disabilities are identified within a variety of labels/classifications to include autism, multiple disabilities, and moderate to profound intellectual disabilities. Please take about twenty minutes to complete an on-line questionnaire found at:

There is very little existing research on the experiences of fathers in their children’s school settings, particularly fathers of children with disabilities. This survey serves to document your individual responses to this issue. The purpose of this study is to help us understand the experiences of fathers of children and youth with complex disabilities in their children’s school experiences.

 This survey is designed to be completed by fathers from a variety of backgrounds and differing experiences and we invite all fathers, step-fathers, or other important father figures who have school-aged children (ages 3-21) with complex disabilities to participate. Your participation is totally voluntary and there is no penalty if you do not wish to participate in this research project.

If you have any questions or desire further information, please contact Dr. Nadya Pancsofar at (609) 771-3150. 

Nadya Panscofar, Ph.D.                     Jerry Petroff, Ph.D.
Assistant Professor                             Associate Professor
(609) 771-3150                                   (609) 771-2308                   

This research project has been approved by the Institutional Review Board (IRB) at The College of New Jersey.  If you have any questions or concerns about your rights as a participant in this research study, you may contact the IRB at Your consent will be indicated by your completion of the questionnaire at THE SURVEY WEBSITE. 

Are you a family caregiver of a woman with an intellectual or developmental disability?

Share your perspectives and experiences about sexual and reproductive health care for women with intellectual and developmental disabilities!

WHAT: The Lurie Institute for Disability Policy is conducting an online survey to learn about the perspectives and experiences of family caregivers about sexual and reproductive health care for women with intellectual and developmental disabilities.

WHO: Family caregivers of women with an intellectual or developmental disability who are between the ages of 18 and 45 are invited to participate.

WHY: The results of this study will help us better understand the sexual and reproductive health care needs of women with intellectual and developmental disabilities and their family caregivers.

Survey responses are strictly confidential. Take the survey online! Kx Please contact Robyn Powell at with any questions about the survey.