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Developing a Plan and Myths and Realities

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Forging Ahead: Developing a Plan and Building Community Capacity

To develop a transition plan and build on it, the planning process must include all stakeholders in both the institution and the community. Most effective planning processes include teams that have broad stakeholder participation, as well as specific person-centered teams that plan the transition of each individual into the community. In court-ordered closures, these plans are supervised by a court-appointed monitor.

The type and intensity of the services and supports a person needs vary dramatically depending on functional and medical status, family situation, and goals and dreams. All these factors should be considered in the development of both the community’s plan and the individual plan.

Community planning focuses on meeting a variety of needs, such as these:

  • Housing and necessary housing supports, such as live-in staff
  • Habilitation and rehabilitation needs
  • Medical and nursing supports
  • Behavioral and mental health services and supports
  • Personal assistance care, both in the home and on the job
  • Independent living skills training and supports
  • Employment
  • Recreation

It is critical to the deinstitutionalization movement that these services and supports can be delivered in any type of residential setting, regardless of the intensity of the client’s needs.

Many issues need to be addressed in the community plan to ensure that the system can meet the needs of the person who is transitioning from an institution to the community. These issues include the following:

  • Address the shortage of direct-support workers available to the community-based support system. 

    The success of community-based care relies on the availability of quality direct-support workers. However, the turnover rate averages of 50 percent a year and the vacancy rate, 10 percent to 11 percent. States struggle to recruit and retain a reliable direct-care workforce.[i] 

    Direct-care workers in the community-based system earn, on average, $10.14 an hour, compared with $15.53 for direct-care workers employed in residential institutions.[ii] This disparity contributes to the lower costs in the community.[iii]
  • Be aware of best practices in the deinstitutionalization movement and the development of community capacity. 

    University Centers of Excellence in Developmental Disabilities (UCEDDs), funded by the Administration on Developmental Disabilities in conjunction with state DD agencies and other groups, have developed a number of best practices. For example, they have developed a person-centered planning process (PCP) in which the person with the disability and people important to that person develop a vision of his or her future life and identify the types of services and supports that will be needed to achieve that vision. This approach—combined with a personal budget allocation that the person may apply within the bounds of an approved service plan—has the potential to provide a cost-effective, individualized approach that maximizes quality of life. However, most people with ID/DD obtain community-based residential and day services from a provider agency that manages the facilities, personnel, and logistics of support and fits the clients into predetermined service plans.
  • Know how resources are allocated and the variables that affect quality of care. 

    The resources dedicated to people with ID/DD vary significantly across states, as does the quality of both institutional and community-based services. In some states the system works relatively well, while in others it takes a lot of ingenuity and commitment on the part of the family to obtain high-quality community services.

“We will always need to work on convincing people that we are of value to the community and that we deserve every opportunity that we can get.”

—Oregon self-advocate

  • Understand how the waiting lists for services work, what allowances are available, and how these affect the community’s plan.

    Under the Medicaid HCBS waiver program, states have considerable flexibility in determining the type of services they will provide and the number of people to whom they will provide the services. Many states have long waiting lists for services. Although current institution residents are guaranteed a space in the community and are not placed on a waiting list, the existence of waiting lists for people who are not in institutions casts doubt on a state’s commitment to community living.
  • Understand the impact of individual and community attitudes, and develop strategies to address these when necessary. 

    Affording people with ID/DD the same rights and opportunities as other citizens is often hindered by low expectations for people with DD/ID and the belief that “separate but equal” is justified in this situation.
  • Focus on housing, and develop creative strategies to identify, maintain, and retain housing designed to accommodate the needs of people with ID/DD. Housing can be expensive, and it can be a challenge to find housing with the desired features in areas that allow group living situations.

    A community-based service system depends on the availability of affordable, usable housing, which is typically scarce. Most systems rely on the use of publicly subsidized housing, in combination with individual Supplemental Security Income and Social Security Disability Insurance (SSI and SSDI) payments, because Medicaid does not cover housing costs in the community. Thus, people are often put on waiting lists or remain in their childhood homes far longer than they desire. One’s housing options should not determine what services one gets. All these factors need to be addressed in the plan.
  • Identify a health care provider system that is accessible and accepting. Accessing health care can be challenging. 

    When people with disabilities are disbursed widely in a community, as is desirable, specialized health care and dental services may not be available locally. In 49 states, Medicaid does not pay for routine dental care. Furthermore, many service providers are unwilling to accept Medicaid reimbursement, which they believe is inadequate, further limiting the availability of some practitioners.

Overcoming Misconceptions: Myths and Realities

For many people with an intellectual or developmental disability and their parents, the transition from living in an institution to living in the community is a challenging time, and they have many concerns. Some of these concerns are based in fact and some are based on fear of the unknown and on myths and misinformation about community-based living. When the long-term health and welfare of a loved one is at stake, it is important to be able to separate the wheat from the chaff.

Arguments for and against deinstitutionalization remain, although the option of people with ID/DD to reside in the community is legally settled. An understanding of the community-based setting and the services and supports available can help address the concerns of family members. It can also help in the development of a more robust and comprehensive community service model.

Myth 1. Serving “Difficult to Serve” Populations

Statement of Myth

Some institutions must remain open to provide residential and therapeutic services for populations that are the most difficult to serve in the community, including people who are medically fragile, those who are dually diagnosed with ID/DD and mental illness, and those who are involved with the criminal justice system.

Statement of Reality

Eleven states have succeeded in closing all their state institutions and have developed a variety of approaches to provide necessary services and supports in community settings for all populations. These approaches include PCP that integrates ID/DD supports with medical or psychiatric care, crisis teams, short-term stabilization services, and specialized housing.

Supportive Information

Three groups of residents present additional challenges in closing an institution, but with appropriate planning, these challenges can be overcome.

  • Medically fragile: Some institution residents have complex medical problems that require intensive medical support; for example, seizure disorder, aspiration risk, or dysphagia (difficulty swallowing). Successful states have developed strong PCP processes that include nursing and medical planning. Medical and nursing services for people with ID/DD exist in most communities, because they are similar to the services required by the medically fragile elderly.
  • Dual diagnoses: Half of institution residents have a mental health condition that requires psychiatric attention.[i]Addressing these needs in the community requires integrated interventions from ID/DD and mental health providers. Some states have found that they need to provide additional training for mental health providers to address the special needs of ID/DD clients in order to accommodate the full range of therapeutic needs.[ii] A number of states have developed short-term crisis homes staffed with behavioral specialists and other medically related staff who can stabilize people in crisis.
  • Involved with the criminal justice system: This population presents a special challenge, because the developmental disabilities agencies must balance the public’s demand for safety against the individual’s right to the least restrictive environment. States that have closed all their institutions tend to provide a continuum of residential options. For example, in Oregon, a person might be assigned to a secured residential facility (6–16 residents), an unsecured facility with 24-hour awake supervision, a residential treatment home (five or fewer residents) with 24-hour awake supervision, or less intensive supervision in an adult foster home or independent living with frequent visits from a case manager.[iii] In Vermont and Maryland, placement in small residences may include one-to-one supervision, awake overnight supervision, frequent reporting to a probation officer, or alarms on windows and doors.[iv]

Each state has developed a system to determine what level of restriction is sufficient to protect public safety without infringing on the rights of the individual. The systems have several levels of screening and evaluation, and include input from the DD or mental health agency and the criminal justice system.

Avoiding unnecessary institutionalization: Mobile crisis teams and short-term stabilization services

People who have dual diagnoses of ID/DD and mental illness and those who are medically fragile are more likely than others to experience a crisis that threatens their ability to live successfully in the community. In states that still have institutions, these people might be relegated to an institution when they are in crisis, not because it is the most appropriate option but because it is the only option that is immediately available. In several recent settlements between DOJ and states, the state has been required to develop community-based crisis intervention strategies.

Georgia has recently established a system of mobile crisis units (MCUs) that can be dispatched to people with ID/DD quickly at any time of day or night. The team can provide a range of services, including assessment, crisis intervention, supportive counseling, information and referrals, links to appropriate community-based services for ongoing treatment, and follow-up. Before the development of the MCUs, people in crisis were often sent to ICF/DDs or mental health facilities. The services provided by the MCUs are designed to help a person remain in his or her current placement. In their first six months of operation, the crisis teams were dispatched more than 400 times. In three out of four cases (307 cases), the crisis was resolved at the person’s home, either immediately or through intensive in-home supports. Among the remaining cases, 59 were transported to a crisis support home and 40 were admitted to inpatient mental hospitals, crisis support units, or other facilities. Most cases are resolved immediately or within a week. The system has been effective in reducing reliance on institutions and reducing the involvement of law enforcement. Since the implementation of the Georgia Crisis System, there has been a 40 percent drop in incidents involving law enforcement.[v]

Myth 2. Severity of Disability

Statement of Myth

People who are currently housed in institutions are more severely disabled than those who live in the community, and no evidence shows that they can be served effectively in the community.

Statement of Reality

More people with extensive support needs are served in the community rather than in institutions, demonstrating that all people with ID/DD can be served effectively in the community. While many people in institutions have very significant impairments and will require extensive supports to live in the community, many people with the same level of impairments are already successfully receiving those supports in the community. Many are living with families, with few paid supports.

Supportive information

People with ID/DD vary significantly in age, level of intellectual disability, additional conditions, and functional limitations. In the reduction of institutional populations over the past 40 years, those with higher functional skills and fewer complicating factors were generally discharged first. As a result, a large proportion of people currently living in institutions will need a high level of support when they move into the community.

Research has revealed two important facts about this population:

  • More people with extensive support needs are served in the community than in institutions, indicating that all people with ID/DD can be served effectively in the community.
  • On average, people who live in institutions have a higher level of support needs than those who live in the community.

Both of these facts are important. The first indicates that people with extensive support needs can be served effectively in the community. The second affects the cost estimates for serving them.

Lakin et al. (2006) found that “HCBS finances services for people with a full range of disabilities and support needs, but ICF/DD beneficiaries, on average, on a number of measures, exhibited substantially greater levels of impairment than HCBS recipients. Because of the greater total number of HCBS waiver recipients, there are more HCBS than ICF/DD recipients with substantial impairments.”[vi]

For example, data from California indicate that 18 percent of people in institutions and only 5 percent of people in the community are dependent on medical technology.[vii] However, 80,862 people with ID/DD live in the community in California and 2,252 live in state institutions.[viii] Thus, more than 4,000 technology-dependent people are living successfully in the community and 405 are in institutions.

Myth 3. Cost Comparison by Setting

Statement of Myth

Closing an institution and moving its residents into the community does not save money.

Statement of Reality

The average cost of residential services varies dramatically by type of setting. In 2009, the average annual per capita expenditures were as follows:[ix]

  • Large state institutions—$196,735
  • ICF/DDs (including private institutions and smaller ICF/DD settings)—$138,980
  • Home and community-based services—$43,969

On the basis of these figures, it might seem that moving residents from large state institutions to home and community-based services would save more than $150,000 per capita. However, because these figures are average costs calculated across all people residing in each setting, and the average level of need of people in institutions is higher than that of people currently living in the community, the actual savings are somewhat lower and vary significantly by state.

A number of studies show that although community-based services may be more expensive for a small number of people, closing an institution yields cost savings.[x]

However, there is a risk in framing the deinstitutionalization debate as a cost issue rather than an issue of civil rights and quality of life. Although cost savings can motivate state legislators in the short run, the media may represent the decision as unwillingness to spend funds necessary to care for our most vulnerable citizens.

Supportive Information

Three factors explain why the cost is not reduced from an average of $196,735 to $43,969 when an institution resident is moved into the community.

  • Heterogeneous populations. The average cost of care in the community is not necessarily comparable to the average cost for people in institutions owing to differences in severity of disability and the required services and supports. HCBS covers a wide range of services and supports, and each recipient receives only the ones that are necessary. Thus the average cost of HCBS includes people all along the spectrum—from those who are living with their families and receiving only minimal supports to those who are receiving intensive medical supports 24 hours a day and relying exclusively on paid supports. A greater percentage of the institution residents may require intensive levels of medical supports and services in community homes.
  • Complex funding. The Medicaid ICF/DD program covers most of the costs associated with institutional care. However, a variety of funds are combined to cover the costs of community-based care. While Medicaid covers certain services under the HCBS waiver, other services and supports are funded solely by state funds or by combinations of funds from the U.S. Department of Housing and Urban Development, the Social Security Administration, mental health block grants, and other funding streams. The average HCBS cost figure includes only the Medicaid portion of community-based care.
  • Variability within and among states. The costs of institutional and community-based services vary widely across states depending on the characteristics of users, staff levels, the types of services and supports offered in the waiver, the types of residential options available, and other factors.

A number of studies and state cost estimates address these issues; they consistently find that although community-based services might be more expensive for a small number of people, closing an institution yields cost savings overall.[xi]

Studies conducted in the 1980s and 1990s found that moving people from institutions to community settings saved between 5 percent and 27 percent.[xii] These savings are significant, especially as community care consistently yields better results than institutional care.

The range of expected savings may be even higher in the current environment than it was 20–30 years ago, because the cost of institutional care has skyrocketed. Unfortunately, no retrospective studies have been conducted recently. Three well-designed cost estimates suggest the range of savings that can be expected.

  1. In 2011, Massachusetts estimated that providing community care for the remainder of the residents of its large state institutions would reduce the per capita expenditures for the current institutional population by 40 percent and save $42 million over five years.[xiii] The state based its findings on the financial experience of previous closures in the state.
  2. Kansas assumed that most of the people in its institutions would qualify for the highest tier of community services, and yet the state would still save almost 50 percent per person. The 2011 estimate suggested that the state would save $25 million.[xiv]
  3. Vermont reports that the average per person cost of supports in the most intensive community services category is $208,464 a year, which is 26 percent less than the estimated annual per person cost would have been at Brandon Training School in today’s dollars ($283,470).[xv]
Why Community-Based Care Is Cost-Effective

Community-based services include a diverse array of service types, ranging from minimal intermittent supports to residential and day program services, whereas institutions traditionally offer an established service package (e.g., ICF/DD services). Thus, only a part of the range of community services is comparable with the services provided in a large ICF/DD.

Cost-effectiveness is possible for three basic reasons:

  1. One of the major costs of providing services—and a major component of the cost differential between institutional and community-based care—is the cost of staff. As noted in many studies, from the Pennhurst study in 1985[xvi] to more recent studies,[xvii] the employees of large state institutions are generally unionized state employees who have much richer compensation packages than the people staffing private community-based services.
  2. Institutions have a high fixed cost of maintaining the facility and ancillary services. Most institutions were built to hold many more residents than are currently using the facilities. Thus, the cost per person for the building, electricity, food service, and other services are spread over a small number of people, so it is quite high.
  3. Once PCP is fully developed, states are finding that a significant number of people with developmental disabilities and their families or guardians begin to request less intense levels of specialized care over time than is typically provided in institutions.[xviii]
The “Woodwork Effect”

State legislators have expressed concern that closing institutions and expanding community-based services would result in a “woodwork effect.” They contend that if states make it easy for people to get Medicaid to help pay for services in their homes, many people will want those services. Currently, people rely on unpaid help from family and friends to stay out of institutions. But once states offer decent in-home services, people will “come out of the woodwork” and start asking for them.

To argue that a state should maintain institutions rather than expand community services because too many people might want the latter is to argue that it is appropriate for the state to ration care by offering services no one wants.

In reality, most people with ID/DD who would access services if they were available are already out of the woodwork. They are on waiting lists. Thus, states already have some estimate of the number of people who would use the services if they were available.

Myth 4. Funding of Services and Supports

Statement of Myth

The major funding source for services to people with ID/DD are state taxes and local levies. Each state chooses the programs, services, and supports it will make available to people who live in institutions and those who live in the community.

Statement of Reality

Funding for services for people with ID/DD comes from a variety of sources, but Medicaid pays the lion’s share. In 2009, Medicaid, with a combination of state and federal dollars, accounted for 76 percent of the $53.2 billion of public expenditures on services for people with ID/DD. The bulk of these expenditures are paid through the ICF/MR program and the HCBS waiver program.[xix] The states’ decisions about how to spend funds on Medicaid-eligible people are strongly influenced by Medicaid rules.

Supportive Information

Medicaid program dollars, through the ICF/DD program, are the major source of funding for people with ID/DD who live in institutions. They are also the major source for those who receive services in the community through the HCBS waiver program. Other funding for community-based services comes from the Social Security Administration through SSI and the SSDI) Adult Disabled Children program (ADC), both of which provide direct payments or cash benefits to people with disabilities. These cash benefits are not available to people with disabilities who live in institutions. A small percentage of the funding comes from Medicare, veterans' benefits, or private insurance.

Medicaid Funding

Because the majority of public financing for supports and programs for people with ID/DD is funded through Medicaid and the Social Security Administration, it is important to understand the role each plays in providing services and supports for people with ID/DD in both institutional and community settings.

The federal Medicaid program gives states two main options to include in their state plans for providing long-term care supports for people with ID/DD who are eligible for Medicaid services.

The ICF/DD program. Congress began offering states the option of including the ICF/DD program as a Medicaid benefit in 1971. A state could opt to include the program in its Medicaid plan or it could continue to fund its institutions without federal financial participation. In exchange for the Medicaid funds, institutions had to comply with federal requirements for safety, staffing levels, appropriate active treatment, and qualified professional staff, and meet many other conditions.

By the 1980s, all states had adopted the ICF/DD program. Medicaid contributes matching payments to states, ranging from 50 percent to 83 percent, on the basis of per capita income, giving states with lower per capita income a higher matching rate in an effort to equalize their ability to fund health care services.

HCBS waiver program. In 1981, Congress established the Medicaid HCBS waiver program. The waiver allows states to receive federal matching funds for a variety of residential and other services and supports in the community to Medicaid beneficiaries who would otherwise require institutional care.

The program allows states to waive specific Medicaid regulations, including the requirement to provide the same services to all eligible Medicaid beneficiaries. This waiver allows states to cover a limited number of people or to offer the services only in certain geographic locations. The waiver also allows states to offer different groups of people different sets of services.

The HCBS waiver gives states the option of covering services needed to help a program participant avoid institutional placement. Each state can choose exactly what to offer, tailoring a package of services and defining the services to fit the target population of the particular waiver program. Once a person is enrolled in a waver program, however, the state may not limit access to covered services necessary to ensure his or her health and safety.

In 2009, 48 states and the District of Columbia operated 125 different HCBS waivers for people with ID/DD, including waivers serving the broad population of people with ID/DD and waivers targeting people with specific conditions such as autism spectrum disorders and intellectual disabilities. The two remaining states, Arizona and Vermont, provided similar services as part of research and demonstration waivers authorized by Section 1115 of the Social Security Act.[xx]

Social Security Administration (SSA) Funding

A second source of support to people with ID/DD in community-based settings is the Social Security Administration. SSA provides income support for people with ID/DD through its SSDI program and—most important for the ID/DD population—its SSI program. State supplements to SSI/SSDI and other state funding resources make up the rest of the public sources of revenue for service and supports for people with ID/DD who live in the community. Because housing is not an allowable expense under Medicaid, these cash benefits, along with additional supplementary benefits provided by some states, are often used for housing in the community model.