Recommendations to Improve the Health and Safety of Individuals with Intellectual and Developmental Disabilities Who Receive Services from the New Jersey Division of Developmental Disabilities
Download the HSS White Paper summary here
The Health and Safety Subcommittee (HSS) was initiated by a family member whose adult daughter died in 2019 while residing in a state-licensed provider-managed setting. HSS is working with the Division of Developmental Disabilities (DDD) within the Department of Human Services (DHS) and provider agencies to create systemic changes to ensure such tragedies like this never occur to any individual with I/DD again. Unfortunately, lives remain at risk; the time to act is NOW!
Individuals with I/DD who live in provider-managed settings and have co-occurring medical needs require individualized healthcare oversight.
The risk for a poor outcome intensifies for some individuals who lack the ability to communicate a health-related issue to the Direct Support Professional (DSP). The DSPs caring for persons with I/DD are generally inexperienced and/or receive limited training about common healthcare needs specific to the I/DD population. The lack of necessary staff training places the individual with I/DD in danger of serious illness and even death.
HSS has encouraged family involvement and seeks to create a partnership that includes families, DDD, provider agencies and self-advocates to construct a system of services and supports with appropriate oversight, transparency and accountability to ensure timely and appropriate healthcare interventions and improved health and safety outcomes for individuals with I/DD, co-occurring medical/behavioral conditions, and emerging healthcare needs.
Following is a brief summary highlighting some of the desperately needed systemic changes.
1. Improve Health Outcomes by avoiding preventable illnesses, injuries, and deaths.
• Require comprehensive DSP training on prevention and what to do for the most common causes of fatalities in the IDD population and require documentation of DSP competency by qualified professionals.
• Require DSPs to record health data (such as weight fluctuations, diet, intake/output, and symptoms of illness) daily with individual parameters that warrant reporting irregularities to a health care professional.
• Require the annual ISP meeting to include the development, review, and revision of the individual’s measurable health outcomes and a plan to address health and safety needs.
• Require providers to publish reports on aggregate results of health outcome achievements for consumers.
2. Require implementation of electronic health records.
• Make transparent documentation of health and safety-related records to be readily accessible to guardians, within agencies, and state entities via a dashboard (secure portal) for monitoring and surveillance of unsafe conditions.
• Require independent external evaluation of health and safety records.
3. Improve provider-individual-family relationships through transparency and collaboration.
• Require providers to give procedure and policy manuals to individuals, families/guardians annually.
• Ensure that individuals’ rights are protected by requiring providers to seek input from guardians whenever an individual is unable to communicate needs, signs of illness, or unsafe circumstances. https://nj.gov/humanservices/ddd/documents/Family-Provider-Relations.pdf
• Require guardians (who have not given passive consent) to be consulted for issues related to health and safety to ensure trauma-informed care is provided.
• Require full access to health records to guardians.
• Require independent authorities outside of DHS to mediate unresolved issues following internal grievance procedures and to investigate complaints by individuals or guardians.
4. Eliminate abuse, neglect, and/or exploitation
• Require surveillance for potential risks and investigation of suspected incidents of abuse/exploitation and neglect to be conducted by a multidisciplinary team of qualified professionals.
• Improve provider transparency by increasing the requirements for communication of potential risks to guardians, DDD, and state monitors (Office of Program Integrity and Accountability) such as inadequate staffing, unsafe conditions, and incident reports.
• Ensure provider compliance and effective enforcement of Standards for Community Care Residences and the federal regulation requirements for Home and Community Based Settings (HCBS).
Appendix 2. References
Co-occurring health and safety references
Georgia Department of Behavioral Health and Developmental Disabilities. Online: Mortality Reports | Georgia Department of Behavioral Health and Developmental Disabilities
Georgia Department of Behavioral Health and Developmental Disabilities. Online: Risk, Rates, and Resolution| Georgia Department of Behavioral Health and Developmental Disabilities
Glover G, et al. Mortality in people with intellectual disabilities in England. J Intellect Disable Res. 2017;61(1):62-74. Published on line 2016 Aug 2. doi: 10.1111/jir.12314
Pauline H, et al. The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet. 2014; 383(9920):889-95. doi: https://doi.org/10.1016/s0140-6736(13)62026-7
Kinnear D, et al. Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: cross-sectional study. Published online 2018 Aug 27. doi: 10.17269/s41997-018-0124-8
Kripke C. Adults with Developmental Disabilities: A Comprehensive Approach to Medical Care. Am Fam Physician. 2018;97(10):649-656.
Stankiewicz E, et al. Patterns of mortality among adults with intellectual and developmental disabilities in Ontario. Can J Public Health. 2018;109, 866-72.
Straus D, et al. External Causes of Death among Persons with Developmental Disability: The Effect of Residential Placement. 1998; 147(9):855-62.
Boggs Center: https://rwjms.rutgers.edu/boggscenter/publications/documents/BCSnapshotofDDinNJ_May2018F.pdf
Autism: https://www.chop.edu/news/autism-s-clinical-companions-frequent-comorbidities-asd;
https://disabilitycompendium.org/compendium/2019-state-report-for-county-level-data-prevalence/NJ
https://drexel.edu/~/media/Files/autismoutcomes/publications/NAIR%20Health%202020.ashx
Epilepsy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2802344/
Cerebral palsy: http://www.myspecialist.clinic/uploads/3/4/8/4/34848987/pm_r_review_of_medical_aspects_of_cp.pdf
Down syndrome: https://www.down-syndrome.org/en-us/about-down-syndrome/health/
Partnership references
Kokorelias KM, et al. Towards a universal model of family centered care: A scoping review. BMC Health Services Research. https://doi.org/10.1186/s12913-019-4394-5
Allen D, et al. (2018). The nature of patient and family-centered care for young adults living with chronic disease and their family members: A systematic review. International Journal of Integrated Care, 18. 2019.
doi:10.5334/ijic.3110/
National Autism Indicators Report: Family Perspectives on Services and Support, p.65; Association of Maternal & Child Health Programs. October 2010.
AMCHP Issue Brief: State Profiles in Comprehensive Family Participation. amchp.org 5. Hecht, E., Reynolds, M., Agosta, J., & McGinley, K. (2011).
Building a national agenda for supporting families with a member with intellectual and developmental disabilities. Wingspread Conference, March 6-8, 2011
http://www.aucd.org/docs/documents/wingspread2012_supporting_families.pdf
Cost saving emergency room visits:
https://pubmed.ncbi.nlm.nih.gov/26762115/
https://pubmed.ncbi.nlm.nih.gov/27844247/
https://link.springer.com/article/10.1007/s10803-019-04166-y
https://www.sciencedaily.com/releases/2018/06/180619122721.htm