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Health & Safety White Paper
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
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. (Link to DDD Communication on Family and Provider Relations)
• 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 1. Background
The New Jersey system that serves individuals with intellectual/developmental disabilities (I/DD) who live in various residential settings managed by providers is primarily funded through state and federal Medicaid dollars. Although Medicaid funding is a healthcare benefit, the NJ Division of Developmental Disabilities (DDD) and NJ Children’s System of Care (CSOC) system lack specific and effective guidelines to meet comprehensive healthcare needs of individuals with I/DD using a person-centered approach. The lack of meaningful person-centered effective guidelines and oversight has resulted in the deterioration of the health of many individuals with I/DD living in various residential settings in NJ. For this paper, adults with I/DD served in the DDD system will be the focus.
Many individuals with I/DD have multiple complicating factors that present significant challenges for staff in recognizing early signs of illness. Some individuals with I/DD experience a range of communication barriers, such as cognitive impairments, limited speech, or complete inability to speak, that impact directly on their ability to effectively relay subtle changes in their physical wellbeing. This added layer of complexity requires caregivers to be well trained in a multitude of areas and have a clear understating of compounding factors unique to each individual, e.g., communication skills, level of cognitive functioning, chronic and past medical concerns, to ensure their health and well-being. It is critical the caregiver is trained and able to implement the care required for each individual according to their person-centered plan.
Co-existing issues for people with I/DD require a wide-range of person-centered support needs ranging from mobility impairments necessitating adaptive equipment (e.g., walker, wheelchair, ramps, shower chair, etc.) sometimes in combination with both long-term and short-term medical interventions (e.g., physical, occupational and speech therapy, etc.), hearing impairment, and inability to communicate verbally with a need for an augmentative speech device. These co-occurring health conditions often complicate the ability of caregivers to recognize, report and react to emerging or current medical conditions. The inability to effectively communicate discomfort or pain to a staff member, whether due to lack of speech or cognitive impairment, and absence of person-centered plans has exacerbated failures to recognize emerging medical issues in need of medical intervention.
Mortality data indicate that without person-centered training and oversight it is likely that this subset of the I/DD population is at higher risk for premature/preventable death (See References: Appendix 2). Except for a very limited number of medical groups and healthcare systems experienced in addressing health issues for people with I/DD, the general health service system is ill-equipped to recognize and address the medical needs of this vulnerable group. Morbidity studies have documented numerous health concerns that when diagnosed and treated at an early stage regularly lead to positive outcomes within the general population. Unfortunately, these same health concerns, occur more frequently within the I/DD population, often go unrecognized and untreated, and lead to more serious consequences, including death.
Physical symptoms of common medical issues (e.g., constipation, discomfort on urination, dehydration, toothache) coupled with limited or no communication skills and/or cognitive barriers can lead to and have directly resulted in severe negative health outcomes for individuals with I/DD. It is widely recognized that a significantly higher proportion of people with I/DD experience several common medical conditions than the overall population and have been linked to an increased incidence of poor health outcomes, including death. This group of common medical conditions, often referred to as the Fatal Five (now 6 identified) include:
2. Constipation/Bowel Obstruction
Person-centered medical training targeted to teach staff to prevent, recognize and effectively manage these health conditions has been shown to improve daily care and health outcomes for individuals with I/DD. Healthcare training focused on how to recognize specific medical conditions at an early stage allow caregivers to respond appropriately, potentially avoiding a more serious negative health outcome. Over the past decade, the recognition that people with I/DD are susceptible to the “Fatal Five” has led to programs designed to address and educate staff about the signs and symptoms of each of these commonly known medical issues. Additionally, person-centered training of caregivers is effective in recognizing the early signs of illness in those they support, resulting in better outcomes.
While DSPs during a normal shift provide a wide range of supports from transportation, personal care and medication administration and much more, the ability to recognize emerging healthcare issues is absolutely vital at every support level. Direct care services for individuals with I/DD living in licensed facilities are funded by Medicaid. Clearly, individuals who require these services and supports to live in their communities need staff who have received formal healthcare training, and in some cases, certification and continuing education. Appropriate training curricula are readily available, accessible, and can be adapted to the meet specific person-centered training for each individual with I/DD at every level of support needs.
Most individuals with I/DD have been cared for in their family home for most of their lives. Generally, families have been intimately involved at every level of care and have a wealth of knowledge about their family member’s needs, most importantly, medically-related care oversight. Families should be allowed and encouraged to convey that knowledge to caregivers in licensed facilities, where DSPs may have little or no experience caring for these vulnerable individuals. Families are the “experts” about the individual and should be able to provide person-centered details about daily care as well as common signs and signals of potential medical conditions to which they may be susceptible. This knowledge and experience is critical for those persons with co-occurring personal challenges, e.g., limited or no communication skills, cognitive impairments, etc. This subgroup is at increased risk for developing medical conditions that if not recognized and addressed appropriately will worsen and may result in devastating negative health outcomes.
Despite the wealth of person-centered information and knowledge families can provide to staff, especially medically-related conditions, families frequently report providers are often not receptive to family involvement, including health-related concerns. Partnerships between families, individuals and providers are crucial to better health outcomes. This lack of collaboration has often led to poor overall health of individuals with I/DD resulting in avoidable medical conditions, including hospitalizations with serious health outcomes, even death.
In New Jersey, adults with I/DD needing and receiving services within DDD are required to complete the NJ Comprehensive Assessment Tool (NJ CAT). This tool is a needs-based assessment survey that is intended to measure support needs and is used to develop the ISP and PCPT. Results of the NJ CAT establish each individual’s tier and budget used to pay for required supports. The ISP is meant to reflect the level of support, including specific person-centered thinking and planning tools needed to keep the individual healthy & safe (medical & behavioral), and staff qualifications including training requirements to support the individual.
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.
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.
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
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