Myth 5. Community Capacity and “Waiting Lists”

Statement of Myth

There is no room in the community-based service systems for people who are currently in institutions. Waiting lists are a testament to that reality.

Statement of Reality

People with ID/DD who are leaving institutions are entitled to HCBS waiver program services and supports, which must be made available in the community. The necessary services and supports are identified during discharge planning. Even though almost all states have waiting lists for services, the people who are leaving an institution do not compete with those on the waiting list. Waiver services, including residential supports, can be developed more quickly than institutional care; therefore, once funding is available, services can be quickly put into place.

Statement of Supportive Information

All people who meet the financial and other eligibility criteria for Medicaid and the level-of-care criteria for ICF/DD services are entitled to receive them in an institutional setting. As an extension of that entitlement, people who are being discharged from ICF/DDs are entitled to HCBS waiver services and thus, are exempt from waiting lists. As part of the discharge process, services and supports are identified and provided in the community using HCBS waiver program funds through Medicaid.

For those who do not currently live in an institutional setting, a state may limit the number of eligible Medicaid recipients to whom it provides HCBS waiver services. In other words, a community resident might qualify for Medicaid and meet the level-of-care criteria for the HCBS waiver but still not receive services because the state has reached its preset limit. In most states, these applicants are put on a waiting list. This situation leads to an institutional bias in the way Medicaid dollars are allocated.

Waiting Lists

In 2009, an estimated 122,000 people in the United States were on waiting lists for residential services. A state may modify the limit with permission from the Centers for Medicare and Medicaid Services (CMS).

Historically, spending for institutional care has exceeded expenditures for community care. However, the disproportionate spending on institutional care has diminished considerably in recent years. Nationally, ICF/DD expenditures as a percentage of Medicaid long-term care expenditures for ID/DD have been declining as HCBS waiver spending has increased (see Figure 3). However, states continue to apply a disproportionate amount of resources to institutions.

Figure 3. Annual Expenditures in Billions of Dollars for HCBS and ICF/MR as a Percentage of Total Expenditures, 1994–2009

Source: Data from Lakin et al. 2010, Table 3.17b.

In 2008, Medicaid spent $34.3 billion on long-term care for people with developmental disabilities. ICF/DD accounted for 35 percent of the spending ($12 billion), while HCBS waivers accounted for 65 percent ($22.3 billion). The institutional bias has declined since 1994, when Medicaid spent 78 percent of its DD long-term care dollars on ICF/DD.[i]

Elimination of waiting lists is a priority for advocates in the community, and this has been the target of both legal and legislative action in some states. After some institutions closed in Oregon, the issue of waiting lists arose; it was addressed through legal and legislative action.

In January 2000, five people with developmental disabilities and their families filed a lawsuit against the state. They claimed that they were unfairly being denied access to services they were entitled to receive. Staley v. Kitzhaber became a class action, representing more than 3,000 Oregonians with developmental disabilities. A settlement was reached in September 2000 and the Oregon Legislature made $37 million in general funds available for the first biennium of funding. Implementation of the Staley v. Kitzhaber settlement agreement began on July 1, 2001.

The settlement agreement is intended to eliminate or significantly reduce the number of people with developmental disabilities who are waiting for services by increasing the availability of comprehensive services on a noncrisis basis and providing self-directed support services for all eligible adults.[ii]

Myth 6. Benefits of Community Living

Statement of Myth

The lives of people with ID/DD do not change significantly when they leave the institution and move into the community.

Statement of Reality

Life in the community provides the possibility for “freedom, dignity, and a sense of belonging” that is not possible in an institutional setting.[iii]

Supportive Information

A substantial body of research has evaluated the impact of deinstitutionalization on quality of life, behavioral outcomes, life satisfaction, competence in activities of daily living, challenging behaviors, and health. The studies—regardless of analytical technique or country of origin—find that living in the community yields positive results in a number of quality of life domains.

Choice and self-determination. Compared with institution residents, community residents have more opportunities to make choices, as well as larger social networks and more friends. They access more mainstream facilities, participate more in community life, have more chances to acquire new skills and develop existing skills, and are more satisfied with their living arrangements.[iv]

Quality of life indicators. Extensive research has evaluated the impact of deinstitutionalization on quality of life, behavioral outcomes, life satisfaction, competence in activities of daily living, and challenging behaviors. Studies find that living in the community yields positive results. Quality of life has many elements, such as personal health and well-being, a sense of home, a network of friends, the availability of choices, self-respect, and personal fulfillment. These elements are desired by all people in all countries of the world. Researchers have found that quality of life involves eight domains:[v]

1. Interpersonal relations and interactions—relationships, supports
2. Social inclusion—community integration and participation, community roles, social supports
3. Self-determination—autonomy, personal control, goals and personal values, choices
4. Rights—human (respect, dignity, equality) and legal (citizenship, access, due process)
5. Material well-being—financial status, employment, housing
6. Personal development—education, personal competence, performance
7. Emotional well-being—contentment, self-concept, lack of stress
8. Physical well-being—health and health care, activities of daily living, leisure

Measuring quality of life characteristics to determine the success of deinstitutionalization and improve the delivery of services and supports in community-based models is an important activity. The National Core Indicators (NCI) 2009–2010 survey shows some of these quality of life characteristics. This survey focuses on the level of community participation experienced by community-based service consumers in 16 states; Orange County, CA; and the District of Columbia. It compares these scores with the scores of those who reside in various settings, including institutions. In addition to background, population, and other statistical information, the survey measures consumer outcomes for certain core indicators.[vi]

Figures 4 and 5 are charts from the data collected in the survey. They reflect survey respondents’ feelings about choice, decision making, community inclusion, relationships, and satisfaction.

Figure 4. Proportion of People Who Report Having Friends and Caring Relationships with People Other Than Support Staff and Family Members

Source: Analysis by Valerie J. Bradley, Health Services Research Institute. Data from National Core Indicators project. Based on 6,711 adults with developmental disabilities who received services in participating NCI states during 2009–10. “Group home” includes all community-based settings except an individual’s home or a family’s home.

Figure 5. Proportion of People Who Like Their Home or Where They Live

Source: Analysis by Valerie J. Bradley, Health Services Research Institute. Data from National Core Indicators project. Based on 6,711 adults with developmental disabilities who received services in participating NCI states during 2009–10. “Group home” includes all community-based settings except an individual’s home or a family’s home.

Since 2005, at least four well-regarded meta-analyses of institutional versus community care have been published: Lakin et al.,[i] Kozma et al.,[ii] Walsh et al.,[iii] and Stancliffe et al.[iv] Together, the analyses reviewed more than 150 articles that meet accepted criteria for quality research. The literature reviews indicate that community-based settings, services, and supports are superior to institutional settings in many areas, but certain key elements must be in place for the community living experience to be optimum.

Myth 7. Institutional Closure and the Impact on the Economy

Statement of Myth

We should keep institutions open to retain good jobs in the small towns and rural areas where many of them are located.

Statement of Reality

People with intellectual and developmental disabilities have a right to live in a setting of their choice; the impact of their choice on the economy of an area that houses an institution is not their responsibility. Moreover, with proper planning, states can mitigate the economic impact of closing institutions.

Supportive Information

Progress in deinstitutionalization in many states—such as Illinois, Kansas, Massachusetts, New Jersey, and Washington—has been stymied by the politics of institution closure. Communities that believe closure would devastate their local economy have reacted with outrage, and unions representing staff have rallied to prevent the loss of jobs.

Many institutions are in small towns and rural areas, and are major employers. Gary Blumenthal, president of the Association of Developmental Disability Providers in Massachusetts, says, “Opposition to institutional closure can be strictly parochial, including opposition from local legislators who represent communities with limited employment opportunities; thus the closure of the state institution may feel like a major economic drag. Regardless, holding people with disabilities hostage to local economic concerns is viewed by advocates as inappropriate treatment of people with disabilities.”[v]

To address the difficult questions about economic impact on local communities and the loss of jobs, some states have created closure commissions to study the impact of specific closures on residents, their families, workers, and the economy of the community.

Concern over the economic impact of the closure of a large public employer is not unique to institutions that house people with ID/DD. Similar debates occur when governments close military bases or prisons and other correctional facilities.

Mitigating the Impact on Employees

Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDS), says, “No state has gone through the closure process without facing opposition of varying degrees from union or nonunion institution employees.” Others point out that employee opposition to closure isn’t just about jobs and salaries and benefits. Long-term employees of these institutions are genuinely concerned about residents’ care.[vi]

Experts seem to agree that a key set of initial strategies can be helpful in this situation:[vii]

• Include workers in closure commissions and work groups as early as possible in the closure process.
• Show employees that you respect them and value their input and participation.
• State officials should communicate directly with employees.

Studies have been conducted on the impact of the closure of state institutions and hospitals—including institutions serving people with ID/DD, as well as prisons and juvenile correction facilities. Although these studies have mentioned the economic impact in terms of cost savings, they have not focused specifically on the effects on workers and communities as a whole. Strategies to ameliorate these effects include the following:

• States have shifted positions from the institution to the community, so that workers remain employed and involved, but they work in the community rather than in an institution. California, Georgia, Kansas, Pennsylvania, Oregon, and Wisconsin have used this strategy.
• States, usually with the leadership of the governor, have adopted a hire-first policy that gives displaced institution workers priority for other state jobs.
• States have provided outplacement services to displaced workers that include retraining and placement assistance in the community. Indiana did an exemplary job of training workers for both state and private sector jobs.
• States have incentivized retirement, offering attractive “early out” packages. Alabama, California, Massachusetts, Michigan, and several other states have used this strategy.
• Some states have established state-operated community-based alternatives and reassign some of the institution staff to these new residences.

Some state employees faced with losing their jobs have responded entrepreneurially by forming their own companies. Snug Harbor Home Health in Indiana is one example of this approach.

Mitigating the Impact on the Economy of the Community

Closure of an institution can provide an opportunity and resources to reinvest the money earned by closure and the sale of the property. Oregon took advantage of this opportunity. In 1999, the legislature reinvested $10 million in savings from the Fairview closure to increase direct-care wages by $1/hour, create capacity in counties to respond to people in crisis (add staffing and funds for short-term diversion needs), and increase funds for family support from $3 million to $8 million.

In the same year, the legislature passed the Fairview Trust Fund bill, which directed the sale of the Fairview property and established a trust. Interest and a small amount of the principal from the trust are used to help people with developmental disabilities stay in their own homes in their own communities. The trust provides grants of less than $5,000 for housing modifications to people with ID/DD who are living in their own home or their family’s home. In 2010, the state distributed $400,000.[viii]

Appropriate Planning

In successful state closures, state officials, from legislators to the governor, must ensure that the savings from closure will be reinvested in community-based services and must engage their constituents at all levels in focusing on the potential for economic development of the property and the entrepreneurial opportunities for workers and community members in the postclosure environment. The following questions should be discussed openly and fairly:

• How many jobs will be eliminated?
• How will these job losses be staged over the course of the transition?
• What percentage of new jobs in the community will go to state workers?
• What efforts will be made to help employees find new state jobs? Other jobs?
• What is the anticipated impact of employees with seniority bumping employees who have special training or experience serving special populations?
• What retraining opportunities are available in the community?
• What is the anticipated economic impact on the local economy?
• What provisions will be made to help the community develop economic alternatives?

Careful planning, employee participation, and community inclusion can ease the impact of the closure and help keep the focus on the most important issue: the health and well-being of the people with ID/DD who live in the institution that is being closed.

Myth 8. Mortality

Statement of Myth

People with ID/DD who live in the community will experience higher mortality than those who receive care in an institutional setting.

Statement of Reality

The mortality rate of people with ID/DD is a function of quality of care and the availability and quality of services and supports, not the setting in which they receive care.

This myth is based on a 1998 study by O’Brian and Zaharia that statistically analyzed the mortality rate of people who were transferred out of institutions in California between 1993 and 1999. Their methodology and findings have been discredited by numerous other researchers, who have found no increase in mortality rates as a result of moving out of institutions.[ix]

Supportive Information

Recent methodologically sound studies have found no increase in mortality.

• Conroy and Adler found improved survival for persons leaving the Pennhurst institution for life in the community and no evidence of transfer trauma.[x]
• Lerman, Apgar, and Jordan (2003) found that the death ratio of 150 movers who left a New Jersey institution was comparable to that of a matched group of 150 stayers, after controlling for critical high-risk variables.[xi]
• 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), overall, the long-term survival rates improve.[xii]
• 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.[xiii]

In the 1990s, Strauss and his colleagues suggested that people with developmental disabilities, particularly those with severe disabilities, have higher mortality rates in the community than in institutions. Researchers have critiqued Strauss’s methodology and the quality of his data[xiv] and have been unable to reproduce his results.[xv]

All states must take measures to ensure that vulnerable people—whether living in institutions or in the community—are healthy, safe, and protected from harm. Newspaper reports, protection and advocacy (P&A) investigations, and state investigations show that instances of abuse and neglect occur in community settings, and some of these result in unnecessary deaths. However, the same can be said about institutions. If a state’s safeguards are not rigorous, enforced, and closely monitored, people with developmental disabilities are not safe regardless of where they live.

As systems of care become more sophisticated and mature, states can increase their efforts in quality assurance to protect health and safety. Missouri, for example, has instituted a Health Identification Planning System (HIPS)—a quality monitoring process for the discovery and remediation of health and safety concerns for people in Division of Developmental Disability community residential services. A health inventory tool is completed when a person enters community placement, annually, and whenever a significant health change occurs. Regional office registered nurses complete nursing reviews on people with a certain score on their health inventory. Nursing reviews evaluate the provider's health supports and services and the person’s response to treatment, and identify unmet health care needs.

An increasing number of states are also conducting mortality studies, reviewing each death, and have established proactive programs and initiatives to improve the health status of people with developmental disabilities.

Myth 9. Olmstead and Choice

Statement of Myth

The Supreme Court ruling in Olmstead guarantees people the option to choose, including the right to choose an institution.

Statement of Reality

The Olmstead decision was intended to ensure that people with disabilities have the right to treatment in the “most integrated setting appropriate to [their] needs.” In most of the recent lower court decisions addressing the issue, the courts generally agreed that the ADA’s antidiscrimination position does not provide an actionable right to institutional care.

Supportive Information

Some of those who oppose institutional closure claim that some people with ID/DD are so severely disabled that they cannot handle or benefit from community living and that institutions are the most integrated setting appropriate to their needs. They claim that Olmstead gives people with ID/DD and their guardians the right to choose the setting they believe is most appropriate, even if that setting is an institution.

However, the Olmstead decision says that state facilities may remain open without violating the ADA, but it does not say that states must keep institutions open (if they have them) to comply with the ADA. Courts generally agree that neither the ADA nor Olmstead gives people the right to institutional care.

The Olmstead Decision

In June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that the unnecessary segregation of people with disabilities in institutions may constitute discrimination based on disability. The court ruled that the ADA requires states to provide community-based services rather than institutional placements for people with disabilities if (a) community placement is appropriate; (b) the transfer is not opposed by the affected individual; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others who are receiving state-supported services.[xvi]

The Court went on to say that a state can meet its Olmstead obligations if it has a “comprehensive, effectively working plan for evaluating and placing people with disabilities in less restrictive settings” and “a waiting list that moves at a reasonable pace and that is not controlled by the state’s endeavors to keep its institutions fully populated.”