Research and Surveys

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 NationalProviderSurvey@udel.edu


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: https://survey.az1.qualtrics.com/jfe/form/SV_08wZJEhfnY10ZEN

Or contact:
Christina Marsack, Assistant Professor, Eastern Michigan University
cmarsack@emich.edu


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: https://www.surveymonkey.com/r/L5R65HK

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
pancsofa@tcnj.edu                             petroff@tcnj.edu

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 http://www.tcnj.edu/~irb/. Your consent will be indicated by your completion of the questionnaire at THE SURVEY WEBSITE. 


Survey of families of adults with disabilities to explore the factors associated with different types of residential placements and respite care services

Vanderbilt Kennedy Center is conducting a survey of families of adults with disabilities to explore the factors associated with different types of residential placements and respite care services for adults with disabilities. They’ve asked us to disseminate the survey flyer to families of adults with disabilities. Thanks for reviewing the flyer and forwarding it as you are able. Surveys are due by April 30, 2018. If you’re interested their letter of IRB approval is also attached.

Vanderbilt tells us the survey will take less than 30 minutes to complete. The survey is anonymous and voluntary and the responses are confidential. The responses will be helpful in determining issues and supports related to residential and respite care services. They will raffle ten $25 gift cards at the close of the survey for participants who complete the survey.

If you would like to complete the survey please follow the link: https://is.gd/residential_respite_survey

If you have any questions or concerns pertaining to the survey, please contact Maria P. Mello, M.Ed., BCBA at maria.p.mello@vanderbilt.edu or at (615) 669-2581.

Bridgette Garcia, Master’s Student
Department of Special Education
Vanderbilt Kennedy Center
Vanderbilt University

Maria P. Mello, PhD Candidate
Department of Special Education
Vanderbilt Kennedy Center
Vanderbilt University


Online survey about getting and using health insurance and health care services

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about getting and using health insurance and health care services.

Whether you have private insurance, insurance from an employer, Medicaid, Medicare or no insurance please complete the survey. We want to know how the Affordable Care Act (ACA) may be affecting your life. Click here to complete the survey: https://kusurvey.ca1.qualtrics.com/jfe/form/SV_cRVi7OagAy883vn

More about Collaborative: http://www.chril.ilru.org/