Myths and Realities

Four groups of people are often cited as the most difficult to serve in the community.

• Medically Fragile: Some institution residents have complex medical conditions such as seizure disorder, aspiration risk, and dysphagia, requiring intensive medical support. If skilled nursing and medical planning are provided, successful community placement of people with complex medical issues can be ensured (Kozma et al., 2003).
• Dual Diagnoses: Half of institution residents have a condition requiring psychiatric attention (Lakin et al., 2009). Often people with dual diagnoses need high levels of services and supports that require integrated interventions from both ID/DD and mental health providers. Often ID/DD providers do not have the capacity to provide treatment for mental health issues, and mental health providers do not have the capacity to provide self-care supports to address ID/DD issues. Joint system planning can be difficult because the two types of services are available through different funding streams (Day, 2009).
• Involved with the Criminal Justice System: Developmental services agencies are expected to serve a public safety function for these individuals. This can be challenging in the context of developing a system designed to promote self-determination and community participation (Bascom, 2009).
• Older People Who Have Spent Many Years in the Institution: Older residents who have spent many years in an institution present several challenges; they (or their parents or guardians) may feel that the institution is their home and they do not want to be uprooted. Many have never had the experience of living in the community.

Some states have developed specific strategies to meet the needs of challenging populations, including those with the most significant challenges. People with co-occurring developmental disabilities and mental illnesses and older adults with developmental disabilities are particularly vulnerable populations. They face barriers to services related to a lack of coordination and collaboration across service systems, as well as gaps in research, clinical expertise, and access to appropriate programs. This lack of coordination has many causes, including separate systems for financing services; a reluctance by mental health and developmental disabilities systems to allocate scarce resources for a high-needs population that could be served in another service system; established provider networks that are not cross-trained; and the evolution of advocacy movements emphasizing different priorities. In many cases, specific barriers to service may be both a cause and a result of the lack of coordination across systems.

In 2002, the Surgeon General addressed the needs of vulnerable populations in A National Blueprint to Improve the Health of Persons with [Mental Retardation].

States and advocates have implemented strategies and programs to address the needs of people with complex medical needs, dual diagnoses, and older adults with development disabilities. For example:

• To facilitate the closure of Agnews Developmental Center, California created 23 licensed homes in the community that provide sophisticated medical support (SB 962 homes). Although they are expensive (an average monthly cost of $15,000 per person), they seem to be meeting the needs of a medically fragile population (California Health and Human Service Agency ,2010).
• In 2008, Tennessee opened a 16-bed ICF/DD with medical services including 24-hour nursing care.
• Missouri advocates founded the Association on Aging with Developmental Disabilities to increase awareness of the importance of providing community-based services and support focusing on older adults with developmental disabilities.
• The Florida Department of Elder Affairs sponsored training for service providers on meeting the needs of aging people with developmental disabilities. (www.adrc-tae.org/tiki-download_file.php?fileId=30426)
• As part of a federal lawsuit settlement, the State of Hawaii is required to take specific steps to identify people with developmental disabilities within the mental health system and ensure that there are smooth discharges from the state psychiatric hospital.
• In 2008, the New Jersey Department of Human Services convened the Dual Diagnosis Task Force to examine and resolve the serious lack of services, unmet service needs, and other significant obstacles to receiving mental health and developmental disability services. The task force made recommendations on a framework for change that would enable the service system to effectively serve the needs of children and adults with developmental disabilities and co-occurring mental health and/or behavior disorders.
• Oregon and several other states use person-centered planning, coupled with individual budgeting, to adequately address complex individual needs.
• Maryland’s Rosewood Center placed 17 of the 30 court-committed individuals in the community and 13 in a secure residential facility to ensure public safety. In the community, the individuals were placed in small residences with a range of supports, including one-to-one supervision and/or awake overnight supervision, or creative monitoring in a small (up to three individuals) residential setting with day, vocational, or supported employment services. Monitoring may include oversight by another agency (regular reporting to a probation officer through the Department of Corrections) or monitoring devices (alarmed windows and doors) (Maryland Developmental Disabilities Administration, 2008).

Opponents of institutional closure argue that it is easier to monitor the quality of a small number of large institutions rather than a large number of smaller facilities. Proponents of deinstitutionalization admit that “in the early phases of deinstitutionalization, efforts to develop quality assurance strategies suited to community services were sometimes subordinated in the rush to meet court-ordered deadlines” (Bradley and Kimmich, 2003).

Most states have now developed mechanisms to monitor the quality of community-based services. However, no quality assurance mechanism is foolproof, and incidents of abuse, neglect, and even death occur in the community, just as they do in institutions. We have found no studies comparing the rate of adverse incidents in the community with the rate in institutional settings.

Family, friends, and neighbors play important roles in assuring safety and service quality for people in community-based settings. Several researchers found that family presence and participation in the person’s life can be an important safeguard for security and service quality (Lemay, 2009) and should be regarded as the most important and dependable source of quality assurance.

Although there are few specific federal requirements as to how states must assure quality, states must persuade the Centers for Medicare and Medicaid Services (CMS) that the state can assure health and welfare. CMS has established a Quality Framework that addresses access, PCP and service delivery, provider capacity, participant safeguards, rights and responsibilities, outcomes and satisfaction, and system performance. Though it is not regulatory, it provides a framework for certain expectations of quality outcomes for HCBS Waiver program services.

In recent years, most states and communities have increased regulation or oversight of community-based services. Most states have multifaceted systems of quality assurance, including the participation of different stakeholders in and outside government and the service system. Systems of quality assurance include the following (from Bascom, 2009):

• Licensure: Group homes and other community residences where three or more unrelated people with disabilities live require licensure.
• Quality Management Reviews: Reviewers assess Medicaid-funded services to ensure compliance with state and federal Medicaid standards. In Vermont, for example, site visits are conducted every two years, with follow-up as appropriate.
• Guardianship: Public guardians who are provided to adults with developmental disabilities play distinct quality assurance functions. They are expected to have regular (in some states at least monthly) face-to-face contact with the people for whom they are guardians and to monitor their welfare and quality of life and advocate for appropriate services.
• Safety and Accessibility Checks: All residences of people with developmental disabilities are inspected for compliance with safety and accessibility standards.
• Consumer and Family Surveys: Annually, about 25 states participate in the National Association of State Directors of Developmental Disability Services and Human Services Research Institute NCI survey, which canvasses consumer and family members to measure the satisfaction of people receiving services and to measure what services people report receiving. (http://www2.hsri.org/nci)
• Critical Incident Reporting Process: Most states have a critical incident reporting process, whereby developmental disability service providers report to the state developmental disability agency when certain incidents take place, such as the death of someone receiving services; use of restrictive procedures; allegations of abuse, neglect, or exploitation; or criminal behavior by or against someone receiving services.
• Grievance and Appeals: The only formal federal requirement for developmental disability service providers is that they provide rights of appeal for eligibility decisions. However, many states require each developmental disability service provider to have written grievance and appeals procedures and to inform applicants and service recipients of that process.
• Abuse Complaints: Any human service provider is legally required to file an immediate report of any suspected abuse, neglect, or exploitation of a vulnerable adult.
• Medicaid Fraud Unit: The Medicaid Fraud Unit is a specially staffed unit within the Office of the Attorney General. It investigates allegations of criminal activity, including abuse, neglect, or exploitation, in any Medicaid-funded facility or involving a person receiving Medicaid-funded supports.
• Service Coordination: The role of service coordinator or case manager often includes the functions of monitoring and advocacy. In some states, the service coordinator is the focal point for individual-based quality assurance at the local level.
• Advocacy: Empowered service users and families are powerful components in the quality assurance chain. Self-advocacy groups work to empower people with disabilities to learn about their rights, step forward, and speak for themselves. In addition, advocacy organizations such as The Arc provide information, support, and advocacy for people with disabilities and their families.
• Other Organizations: Other organizations develop the capacity to monitor specific groups of people. For example, the Guardianship Trust in Vermont provides regular, structured individually based citizen monitoring of residential services provided by the state. Brandon Training School Association is an alliance of parents and other people concerned with the well-being of former residents of Brandon Training School.

All states take measures to make sure that people, whether living in institutions or in the community, are healthy, safe, and protected from harm. However, if the state’s safeguards are not rigorous, closely enforced, and monitored, people with developmental disabilities are not safe, regardless of where they live. Two significant factors increase the risk of abuse and neglect: isolation from family and a system that rewards compliant attitudes among people with developmental disabilities (Valenti-Hein and Schwartz, 1995).

The NCI 2009–2010 survey shows that the majority of people with ID/DD feel safe in their home, in their neighborhood, and their work/day program/daily activity. More than 90 percent of the individuals surveyed reported that they have someone to go to when they feel afraid. Nevertheless, some opponents of deinstitutionalization claim that the safeguards offered in the community are inadequate to ensure the physical safety of a very vulnerable population.

Based on newspaper reports, Protection and Advocacy investigations, and state investigations, it is clear that instances of abuse and neglect occur in community settings, and some of them result in unnecessary deaths. However, the same can be said about institutions. For example, the 2009 “fight club” incident, in which institution workers forced residents to fight one another while employees taped the incidents on their cell phones, made national news. In 2007, the Atlanta Journal-Constitution published an exposé on state mental health hospitals that revealed more than 100 suspicious deaths of patients during the previous five years (Judd, 2010). The 2002 death of Brian Kent in Kiley Center in Waukegan, Illinois, revealed a pattern of neglect caused by unprofessional attitudes, administrative indifference, lack of competence, and caregiver fatigue (Equip for Equality, 2008).

As systems of care become more sophisticated and mature, states are able to move toward increasing their quality assurance efforts to protect health and safety. Missouri, for example, has instituted a Health Identification Planning System, which represents the quality monitoring process for the discovery and remediation of health and safety concerns for individuals in Division of Developmental Disability community residential services. A Health Inventory tool is completed on all people when they enter a community placement and annually, as well as when there are significant health changes. Regional Office registered nurses complete Nursing Reviews on individuals with a defined score on their health inventory. These reviews evaluate the provider’s health supports and services, evaluate the individual’s response to treatment, and identify unmet health care needs.

Missouri also created an Office of Constituent Services to serve as an advocate for people with ID/DD.

Older adults or adults who are medically fragile have a higher mortality rate regardless of where they live (or their geographic location). As a result, mortality comparisons are not straightforward and require complex statistical approaches. For example, a Massachusetts study on deaths showed that the average age at death varied across residential settings. The study indicated generally that the average age of death for each residential setting reflects the relative age and health status of the residents in each of the residential settings. The study also showed that mortality rates are lowest among people living at home or with family. (Center for Developmental Disabilities Evaluation and Research (CDDER), 2010). The study showed that people with developmental disabilities generally died of the same causes as the general population. Heart disease remained the leading cause of death and Alzheimer’s disease the second leading cause.

The Massachusetts Department of Developmental Services (DDS), in collaboration with the CDDER, has focused on the health status of people with developmental disabilities. Examples of projects they have taken on in Massachusetts include the following:

• Identification and customization of a health screening tool for use by direct supportive providers
• Development of Preventive Health Guidelines for Individuals with Mental Retardation
• Root Cause Analysis training and support
• Incident Management protocol development
• Mapping the community-based system of mental health and physical health supports
• Annual mortality reports
• Annual Quality Assurance reports and the development of web-based Quality Briefs
• Implementation of the DDS STOP Falls Pilot to identify patterns and risk factors for falls among people with ID/DD
• Implementation and evaluation of a pilot study of DDS’s new Health Promotion and Coordination initiative
• Support in development of training modules for community providers
• Quantitative analysis of clinical service capacity within the residential provider system
• Analysis of Medicaid pharmacy utilization claims data

An increasing number of states conduct mortality studies, review each death, and have proactively begun programs and initiatives to improve the health status of people with developmental disabilities. However, adults with developmental disabilities are more likely to develop chronic health conditions at younger ages than other adults due to biological factors related to syndromes and associated developmental disabilities, limited access to adequate health care, and lifestyle and environmental issues. They have higher rates of obesity, sedentary behaviors, and poor nutritional habits than the general population (Yamaki, 2005).

Most studies find that the mortality rate is comparable across settings or is favorable in community settings. For example:

• Conroy and Adler (1998) found improved survival for people leaving the Pennhurst Institution for life in the community and no evidence of transfer trauma.
• Lerman, Apgar, and Jordan (2003) found the death ratio of 150 movers who left a New Jersey institution was quite comparable to a matched group of 150 stayers after controlling for critical high risk variables.
• Heller et al. (1998) found that, although transitions from institutions or nursing homes to community settings may result in short-term stress and risks that may affect mortality (transfer trauma), the long-term survival rates improve.
• Hsieh et al. (2009) found that, regardless of residential location, those who had a greater variation in the physical environment and greater involvement in social activities had a lower risk of mortality.

Despite such findings, opponents of deinstitutionalization continue to use the mortality argument. In its advocacy literature, one group continues to cite Strauss, Eyman, and Grossman (1996) and Strauss, Kastner, and Shavelle (1998), who suggest that people with developmental disabilities, particularly those with severe disabilities, have higher mortality rates in the community than in institutions.

Subsequent studies did not reproduce these results. O’Brien and Zaharia (1998) question the accuracy of the database used by Strauss and colleagues, Durkin (1996) critiques Strauss’s methodology, and Lerman et al. (2003) review a number of unsuccessful attempts to reproduce the results.