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Historically, persons with intellectual and developmental disabilities (I/DD) were institutionalized across the United States. The passage of policy enabling reimbursement for care in the community setting led to de-institutionalization, with the goal of increasing longevity and improving quality of life outcomes for this sub-population. Nevertheless, de-institutionalization, in and of itself, has proven to be insufficient for ensuring the wellbeing of persons with I/DD. Many examples of sub-optimal care resulting in premature death and disability in this population led to a formal investigation, and subsequently resulted in a change in policies to support ongoing monitoring of the quality of care received by those with I/DD. One aspect of quality monitoring is mortality reviews. This article provides historical context and some basic information about the mortality review process for those with I/DD in the State of Hawai‘i. It also highlights the importance of multiple disciplines working together to identify system-level changes needed to support those with I/DD. Clinicians and those who care for those with I/DD should be aware of these reviews and promote optimal health for those with I/DD.
In 1978, the United States federal government defined developmental disabilities in the Developmental Disabilities Act (Public Law 95-602). Although each state interprets an intellectual and developmental disability (I/DD) slightly differently, the State of Hawai‘i follows the federal definition closely. Hawai‘i Revised Statute 333F relates that to be a developmental disability a condition must:
People who have developmental disabilities are a heterogeneous group. Most states, recognize autism spectrum disorders, cerebral palsy, and intellectual disabilities as developmental disabilities. Intellectual disabilities affect 12 per 1000 children, and autism approximately 6.6 per 1000 children.1 Although mental health conditions such as schizophrenia are considered “mental impairments,” they are not classified as developmental disabilities.
People with I/DD have problems in cognitive functioning which can affect their learning and problem solving skills. Depending on the severity, activities of daily living may be affected. Profoundly affected people with an I/DD are not able to readily dress or feed themselves, while those mildly affected may have elementary school level math and reading skills. Because of their functional limitations, people with I/DD are at risk for abuse by others. Also, because of cognitive and communication issues, they may receive suboptimal health care as they may not be able to vocalize their symptoms. The population may be at risk for having lower rates of health screenings and receiving other necessary treatments because of the challenges associated with ensuring that they understand why and what the various procedures will entail.
Given the challenges that people with I/DD pose to their families, and due to their difficulties with functioning independently in society, people with I/DD were often placed in institutions. In Hawai‘i, for example, people with I/DD were placed at the Waimano Training School and Hospital. Many states eventually closed their institutions because of poor conditions, abuse, and complaints from the community and disability advocates. One study conducted on those living at Pennhurst Center in Pennsylvania showed less mortality after transition to the community.2 A multi-country review (which included the United States) done by researchers in the United Kingdom looked at multiple factors in the comparison of institutionalization versus community living. This research revealed decreased mortality to be only one indicator of positive health outcomes, with multiple other indicators being important to the quality of life of those with I/DD including community presence and participation, social networks and friendships, family contact, self-determination/choice, adaptive behavior, challenging behavior, psychotropic medication use, and user and family views and satisfaction.3
The end of institutionalization of people with I/DD in Hawai‘i occurred in conjunction with an important policy change: the Medicaid Waiver. The Medicaid Waiver for people with developmental disabilities is a critical mechanism for providing supports for people with I/DD in Hawai‘i, as in many other US states. It waives the need for a person to be in a hospital or other institution to receive Medicaid reimbursement for care. The Waiver promotes home and community services for people with I/DD and emphasizes self-determination and training for work and home functioning. Some of the services provided include employment supports, personalized assistance, professional support for families taking care of loved ones with I/DD, crisis services, and adult day treatment programs (Providing activities during the day for people with I/DD who are not employed). Once the Waiver was in place, Hawai‘i was able to end the institutionalization of people with I/DD, and the Waimano Training School and Hospital closed its doors in June 1999.
In conjunction with ending institutionalization, there arose a need to monitor the impact of the transition on the lives of people with I/DD. While many studies had suggested positive benefits to the community resulting from de-institutionalization, several studies in California showed an increased rate of death thought to be secondary to the “less intensive medical care and supervision available in the community” after a major deinstitutionalization between 1993 and 1996.4
A US federal Government Accountability Office (GAO) investigation was conducted in 2008 in response to highly-publicized untimely deaths in the post-institutionalization era, of several individuals with developmental disabilities, indicating cause for concern. One example in the report is provided below.
“[A] 63-year-old man with visual impairment, arthritis, and significant cognitive disabilities was living in a group home that provided supportive care in the community and also offered recreational activities. According to his legal guardians, they were notified in 2004 that he had suffered a fatal heart attack. In part because he did not have a history of heart problems, his guardians requested an autopsy. The autopsy report identified quality-of-care concerns: the individual choked to death on what appeared to be part of a sandwich, even though he was supposed to be fed pureed food. A subsequent investigation of the death and conditions in the group home found that the home was understaffed and that staff did not consistently prepare meals to meet the special needs of residents.”5
After citing several such examples, the report highlighted reasons why the federal Centers for Medicare and Medicaid Services (CMS) should encourage states with Home and Community Medicaid Waivers to conduct mortality reviews for people with I/DD.5
Safeguards suggested include the review of and follow-up action to critical incidents—events that harm or have the potential to harm waiver beneficiaries. GAO recommendations included: that states include death as a critical incident and conduct mortality reviews; that CMS should distribute information to states about basic and additional components for mortality reviews; and state Medicaid agencies report all deaths among people with developmental disabilities receiving Waiver services to the state office of protection and advocacy.
The report further outlined what it considered to be six basic and four additional components for mortality reviews. The basic components were:
Four additional components were:
In response to the GAO's recommendations, and through its Waiver activities, the Hawai‘i State Department of Health (DOH) Developmental Disabilities Division (DDD) began investigating the possibility of implementing a mortality review process for individuals with I/DD in 2008.
A feasibility analysis, including a review of existing death review systems in the state, was conducted. It surveyed many other systems caring for people with health or disability issues that already review deaths both in the State of Hawai‘i and elsewhere. For example, hospitals routinely review cases of people who die in their facilities. Hospitals and medical training programs often have “Morbidity and Mortality” presentations (M&Ms) or similar meetings so practitioners can learn from previous mistakes. The Centers for Disease Control and Prevention (CDC) publishes the Morbidity and Mortality Weekly Report that reports surveillance data on deaths due to a variety of conditions. The National Center for Child Death Review has a standardized data collection system for states to use.6,7 In addition, there have already been efforts to coordinate different mortality reviews that range the life span, from infancy to the elderly.8 These findings were incorporated into the planning process for the new death review planned for individuals with I/DD.
Mortality reviews for individuals with I/DD began in Hawai‘i in 2009. These reviews were conducted under the direction of DDD that is permitted by Hawai‘i State statute 333F to “develop, lead, administer, coordinate, monitor, evaluate, and set direction for a comprehensive system of supports and services for persons with developmental disabilities or intellectual disabilities within the limits of state or federal resources allocated or available.”
The death reviews typically collected data on demographic information, including age, gender, place of residence (neighbor island, and type of home); as well as other information, including diagnoses and conditions; location of death; last time seen for medical treatment; any changes to care including medications; records from the case manager including Individualized Support Plan for person; notes of agencies providing support; records from the home (if not family home); and clinic and hospital records.
The process also revealed that obtaining information from emergency rooms, clinics, hospitals, agencies, paid providers of supports, and residential homes could sometimes be problematic. These issues were related to guardian approval for record release, particularly if the individual being reviewed did not have a guardian. DDD learned that it can be impossible (if there is no guardian) or difficult (if there is a guardian who is hard to reach) to obtain consent to release information. Therefore, planning was begun towards the passage of new legislation granting the State of Hawai‘i the right to conduct such reviews without the need for consent.
A statute signed June 26, 2012 by then Hawai‘i Governor Abercrombie (Act 162 - Relating to Mortality Review of Deaths of Persons with Developmental or Intellectual Disabilities) eliminated the need for consent to obtain records for mortality reviews in people with I/DD. The pertinent excerpt from the Act is provided here for reference:
Upon written request of the director (of the Department of Health), all providers of medical care or other related services and state and county agencies shall disclose to the department and to those individuals appointed by the director to participate in the mortality review of the death of a person with developmental or intellectual disabilities, adult death review information regarding the circumstances of the death of a person with developmental or intellectual disabilities to allow the department to conduct multidisciplinary and multiagency mortality review of deaths of persons with developmental or intellectual disabilities.
The law required multidisciplinary, multiagency reviews to be conducted, enabling the committee to be comprised of representatives from a variety of practice settings. In addition, other aspects of the law require that the use of information and records from the mortality review be kept confidential; and that reviewers are granted immunity from liability.
Besides Hawai‘i, other states have mortality reviews for individuals with I/DD. Those with policies readily available, published as of April 2016, include the District of Columbia,9–11 Connecticut,12 Massachusetts,13 and Washington State.14
The Hawai‘i I/DD Mortality Review Committee currently includes Department of Health DDD staff including the Branch chief and nurse from the Outcomes and Compliance branch, Medical Director and Nurse from the Clinical and Eligibility Determination Staff, and case management representation. An important member currently is the medical director of the Medicaid programs (QUEST) who represents the Department of Human Services, which is the agency that is the Medicaid coordinator for the State of Hawai‘i. Future representatives will potentially include those from the Developmental Disabilities Council, Protection and Advocacy agency for people with disabilities (the Hawai‘i Disabilities Rights Center), and advocates for, and people with, an I/DD. These outside voices will bring community, legal and advocacy perspectives, which are essential to improving the systems of care for people with I/DD.
Mortality data collected on all individuals served by DDD that died revealed that the average age of death for people with I/DD is much lower than the average US or Hawai‘i life expectancies (Table 1). Additionally, the average age of death recorded by Hawai‘i I/DD systems is on the lower end of the range reported by State I/DD systems nationally. A paper looking at select states showed adults with intellectual disability tend to have a lower life expectancy at birth ranging from 58.7–62.0 years.15
In reviewing causes of death in Hawai‘i, cardiac complications and cancer were common causes of death for both the general state population and those with I/DD (Table 2). However, compared to the general population, deaths attributable to pneumonia and septic shock ranked higher among those with I/DD. These differences are not surprising, given that aspiration pneumonia is a risk for those with cerebral palsy and related conditions, as these conditions cause poor oropharyngeal movement and coordination of chewing and swallowing (dysphagia). One hypothesis to explain the higher rank received by septic shock is that since many people with I/DD are non-communicative or have difficulties in communication, they may not get required emergency medical treatment in a timely manner. Also, people who are non-ambulatory and bedridden are at higher risk for decubitus ulcers that may lead to sepsis and death.
The top-ranked causes of death in Hawai‘i for those with I/DD are similar to that reported by other States. Connecticut's review in 2012 indicated “that in both Connecticut and Massachusetts, the leading causes of death for persons with intellectual disabilities for the years 2002, 2003 and 2004 were heart disease, respiratory disease (including aspiration pneumonia), cancer and sepsis”.13 Massachusetts' review revealed that the rank order of causes of death among its I/DD population in 2012 and 2013 was: (1) heart disease, (2) cancer, (3) Alzheimer's disease. Aspiration pneumonia was the fourth leading cause in 2013 and fifth leading cause in 2012. Septicemia was the fourth leading cause in 2012 and tied for fourth in 2013.14 The Massachusetts report stated that, “certain leading causes [in the Massachusetts I/DD population] differed from the general population, with higher mortality rates from influenza and pneumonia, aspiration pneumonia, and septicemia in the population.” Another national study focused on causes of death in 2009 in adults with intellectual disability receiving state services in select states suggested a lower risk of death from cancer and an increased risk of death from kidney disease, septicemia, Alzheimer's disease, influenza and pneumonia, and aspiration pneumonia. Risk of death was similar to the general population for unintentional injuries and heart disease.15
For each review conducted in 2013 and 2014, the I/DD Mortality Review Committee collected primary care provider and subspecialist records, emergency room and hospital records, care home and provider agency notes, and case management records. Records were collected dating back at least one year from the time of death, unless the review revealed the need for additional historical information. Death certificates and autopsy reports were reviewed if available.
Each death was reviewed in depth by an interdisciplinary team. A report was generated and information in the report was inputted into a database, enabling yearly analysis of aggregate data. In 2013, 42 deaths were recorded compared with 31 in 2014.
Select cases highlighting systems changes that were sought and accomplished as an outcome of the review process are provided in Table 3. The identifying information has been modified to preserve confidentiality.
People with I/DD are often vulnerable because of poor or absent skills in communication. They may have problems telling those around them that they do not feel well and have a problem that requires medical care. They are at a higher risk for chronic medical conditions such as dysphagia, aspiration pneumonia, and decubitus ulcers and require special supports to thrive in home and community settings.
Conducting mortality reviews for people with I/DD enables systematic identification of challenges in effective medical care for the sub-population, leading to recommendations that have the potential to result in improved length and quality of life for this vulnerable population. The DOH will continue to enhance existing efforts by engaging more key stakeholders in the state to improve the robustness of the review completed and recommendations developed. More information on DOH DDD may be found on the Division's webpage: https://www.health.hawaii.gov/ddd/.
The author wishes to thank the Department of Health Developmental Disabilities Division administrator Mary Brogan for her support of the mortality review and this article. Also, the author thanks the previous Division administrator Dr. David Fray, during whose tenure the I/DD mortality review was started and developed. Also, Dr. Okamoto wants to acknowledge the terrific contributions by the mortality review committee members past and present especially Jennifer Ernst, Colleen Kojima, Aaron Arakaki, Tracey Comeaux, Sandy Akina, Kelly Jo Nacino, Bunny Carl-Matsuura, Ted Endo, Stephanie Guieb, Kathy Matsuo, Dr. Curtis Toma, and the Division's case management unit supervisors.
Tetine L Sentell, Office of Public Health Studies at the University of Hawai‘i at Manoa.
Donald Hayes, Hawai‘i Department of Health.