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Person First: A Public Report
Person First: An Investigation and Legal Analysis of People with Intellectual and Developmental Disabilities in New Jersey Nursing Homes
Person First is an investigative report about the current state of individuals with intellectual and developmental disabilities (IDD) in New Jersey nursing homes. This report was compiled from a 16-month investigation by Disability Rights New Jersey, with support from the New Jersey Council on Developmental Disabilities, of 70 nursing homes around the state and interviews with hundreds of individuals with IDD, dozens of guardians and key stakeholders. Our findings were closely analyzed through the lens of the Americans with Disabilities Act (ADA), Olmstead v. L.C., and federal and state laws around, principally, the federal law governing Preadmission Screening and Resident Reviews (PASRR), the federal Home and Community-Based Services Settings rule, including the significant person-centered planning rights components of that rule, and the federal rights afforded to nursing home residents.
Person First analyzes whether nursing homes have replaced Developmental Centers as the default institutional setting for people with IDD, and whether the State is using all available federal laws including PASRR and the person-centered planning rights in the federal HCBS Settings rule to develop and execute a comprehensive, effective Olmstead plan. We also looked closely at whether people with IDD who need the services of a nursing home and chose to live in that institutional setting are receiving the specialized services they are entitled to receive.
Our findings and recommendations are discussed in detail throughout this report.
Note: This report was revised on May 10, 2024 to address ambiguities and updates in the presentation and interpretation of federal data. Disability Rights NJ had gathered data over the course of several years from a CMS website that was decommissioned in the months prior to publication. When we reviewed the data on the new CMS website subsequent to publication, we needed to correct the original presentation of the data and request additional data directly from CMS. The revised report contains the corrected, updated data.
If you would like to support our work and other endeavors that uphold our mission to advance the rights of New Jerseyans with disabilities, a donation to our efforts can be made here:
Webinar Series Recordings
Webinar Part 1 – Introduction and Overview
Webinar Part 2 – Investigation and Key Finding One Discussion
Webinar Part 3 – Key Finding Two Recording (10/23)
Webinar Part 4 – Key Finding Three and Recommendations
Press Coverage
NJ Spotlight News: People with disabilities improperly placed in nursing homes, report says
NorthJersey.com: Hundreds with disabilities in NJ are forced into nursing homes, new report says
NJ.com: N.J. wrongly forces people with developmental disabilities into nursing homes, scathing report says
Open Minds: 26% Of Nursing Home Residents In New Jersey Have I/DD, Five Percentage Points Higher Than National Average
For more news articles, visit Sharing Our Expertise.
Supplemental Resources
Page 36 – Copies of the PASRR Level I, Level II and Resident Review forms currently used for individuals with IDD can be found here:
PASRR Level II Evaluation Form
PASRR Level II Psychiatric Evaluation
PASRR Referral for Level II Pre-Admission Screening
Blank Resident Review referral form
Page 64 – Disability Rights NJ written testimony and comments on Home and Community-based Settings Rule
September 30, 2022 Disability Rights NJ Comments to proposed rules regards HCBS in Assisted Living
Page 77 – Endnote 69 Updated MDS Data Spreadsheet
Related Resources
The following report, “Life After North Princeton Developmental Center: Final Outcomes”, prepared by the Developmental Disabilities Planning Institute in 2003, examines the effects of the closure of North Princeton Developmental Center in 1995 on prior residents. This comprehensive report highlights the importance of deinstitutionalization and increased community living for people with intellectual and developmental disabilities.