Chapter I

DMR OVERVIEW

What is Mental Retardation?

• Mental retardation is a disability, not a disease or illness. The definition of mental retardation used in Connecticut statutes, adopted in 1978, still reflects the generally accepted meaning of the disability.
• Mental retardation means a significant subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period.

_ General intellectual functioning means the results of a general intelligence test (IQ test).

_ Significantly subaverage means an IQ of more than two standard deviations below the mean for the test, or 70.

_ Adaptive behavior means the effectiveness or degree with which an individual meets the standards of personal independence and social responsibility expected for the individual's age and cultural group.

_ Developmental period means the time between birth and turning 18.

• DMR estimates about 1 percent of Connecticut's citizens, or 33,500, have mental retardation. Currently, 14,575 persons with mental retardation are active DMR clients.
• Table I-1 sets out four commonly used mental retardation levels--mild, moderate, severe, and profound. Since 1921, the American Association on Mental Retardation (AAMR) has been a primary source for defining and classifying mental retardation, measures that have changed over the years as understanding about the condition increased. Since the 1960s, the four-level classification of mental retardation based on intellectual function (IQ test results) has been in general use by the AAMR, although the organization has questioned its use.

• The World Health Organization International Classification of Diseases (ICD) also classifies diseases and conditions, and has defined, classified, and described mental retardation. The most recent version is the ICD-10, adopted in 1993. The AAMR does not subscribe to the ICD descriptions, in part because it believes the language is "archaic and stigmatizing"; the AAMR also states the use of mental age scores "in current practice is quite limited." However, these classifications offer informative descriptions related to support needs, albeit generalized, in addition to IQ test scores.
• The use of an intelligence classification for persons with mental retardation as opposed to a classification focus based on a person's adaptive skills and levels of support needed to address deficits is the subject of debate in the mental retardation field. Proponents of reliance on IQ classifications point out the subjectivity and imprecision of support level determinations. Proponents of the skills and needs focus note intelligence scores do not offer a complete picture of an individual. DMR uses both approaches.

Health Issues

• In addition to intellectual and adaptive problems, persons with mental retardation, like people without mental retardation, tend to experience an array of health issues.

_ Some physical and medical issues, though, appear more prevalent among persons with mental retardation, including but not limited to seizure disorders, cerebral palsy, mental illness, scoliosis, and gastrointestinal problems including reflux and constipation.

_ Aspiration pneumonia, where material like food is inhaled into the lungs, is also a common problem especially when coupled with physical disabilities affecting the normal swallowing mechanisms.

_ Ambulation problems affecting some persons with mental retardation and the accompanying inability to do weight-bearing exercise create an increased risk for osteoporosis.

_ Persons with Down Syndrome have heart problems and are more likely to develop Alzheimer's disease, including dementia.

Impact of Services and Supports

• There is a wide range of abilities and disabilities among people with mental retardation. A generally accepted assumption of the field is "with appropriate personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve." (AAMR)

Views on Supporting Persons with Mental Retardation

Connecticut and the rest of the United States have evolved on the question of how best to address issues facing people with mental retardation. Connecticut was one of the earliest states to operate training schools in rural settings for these individuals, a cutting edge approach at one time. In the mid-1960s into the 1970s, a movement began for caring for mentally retarded persons in their communities in less institutional settings. One of these settings is the community living arrangement, the focus of this study. Some of the milestones for residential programs for people with mental retardation are included in Table I-2.

DMR Responsibilities

DMR was established as an independent state agency in 1975, replacing the Office of Mental Retardation within the state's public health department. By state statute, DMR is responsible for:

• the planning, development and administration of complete, comprehensive, and integrated statewide services for persons with mental retardation, including provision of service to persons with Prader-Willi Syndrome¹ and coordinating services to persons with autism;
• administering and operating Southbury Training School, state regional centers, and all state operated community based residential facilities established for the diagnosis, care, and training of persons with mental retardation; and
• establishing standards, providing technical assistance, and exercising the requisite supervision of all state-supported residential, day, and program support services for persons with mental retardation and work activity programs.

Mission Statement

Since 1986, the DMR mission, adopted by the agency, has been to "join with others to create the conditions under which all people with mental retardation experience:

_ presence and participation in Connecticut town life;

_ opportunities to develop and exercise competence;

_ opportunities to make choices in the pursuit of a personal future;

_ good relationships with families and friends; and

_ respect and dignity."

Who DMR Serves and What Services Provided

• As of June 2002, DMR served 19,428 people in a variety of ways, with 14,575 as active clients -- 4,448 infants and toddlers participating in the Birth-to-Three program are not considered DMR clients and are not included in any DMR client numbers for the purposes of this study.
• Forty-two percent (6,131) of DMR clients receive residential services from either DMR-operated or funded settings. Figure I-1 shows where DMR clients live.
• Fifty-three percent (7,666) of DMR clients live with their families or on their own

_ DMR services may include day programs (employment or recreational), respite care, and transportation

• Four of 10 DMR clients live in some kind of DMR operated or funded residential setting.

_ Most DMR clients have a day program component (employment or recreational) that they either travel to or that occurs at the residence, in addition to their residential services.

_ People living in CLAs (3,434) constitute 24 percent of all DMR clients.

DMR Operated/Funded Residential Settings

• There are different types of residential settings DMR operates and funds.

_ Southbury Training School (DMR): A large congregate living residence in a campus setting.

_ Regional Centers (DMR): Campus type settings in each region housing from 20-116 people.

_ Community Living Arrangements (group homes): DMR and private providers. Single family homes and sometimes adjoining apartments in which typically three to six people live.

_ Community Training Homes (private): Like foster care homes.

_ Supported Living (DMR and Private): Persons live in own apartments or with others, with less than 24-hour staff services.

_ Individual Supports (DMR funded): A new program, DMR provides an individual support budget, with which a person can fund his/her own residential setting.

• Further descriptions of each type are provided in Appendix C.
• Figure I-2 shows where the 6,131 DMR residential clients live.

• far, more DMR residential clients live in CLAs operated by private providers (2,698 -- 44 percent) than any other setting. Conversely, 736 persons (12 percent) live in DMR-operated CLAs, while the rest live at Southbury, the regional centers, supported living, or community training homes.

How Residential Settings Have Changed

• Figure I-3 compares the number of current DMR run or funded residential types to those in 1984, the year the Mansfield consent decree was settled. The total number of DMR clients in the settings has changed, as well as the mix of residential type.

• In terms of overall growth, the number of DMR clients rose from 10,998 in FY 92 to 14,580 clients in FY 2002, a 34 percent increase.

Organization

• DMR operates with a central office in Hartford supporting five DMR regions that deliver the core services of residential and day programs, along with individual supports through either direct service delivery or contracted providers.
• Figure I-4 maps the five regions - Eastern, Northwest, North Central, Southwest, and South Central.

• Figure I-5 shows the current DMR organization. The central office support functions are on the left side, while the regions and functions related to services provided by the regions are on the right side.
• Figure I-6 is a regional organization chart. Until recently, there was no requirement that regions be organized similarly.
• Each region is managed by a regional director and three assistant regional directors, each responsible for one of three main areas -- individual and family support, public services, and private services.

_ Within these areas are case managers assigned to individual DMR clients.

_ Under the private services function, private provider contracts are developed and monitored.

_ Under the public services functions, DMR-operated residential settings are run.

• The Quality Improvement function is part of a new organizational plan, and according to DMR is still being developed. The regional abuse/neglect liaisons, who coordinate private provider abuse/neglect investigations, operate in this unit. (See Chapter V).
• Given the focus of this review is on health and safety in CLAs, it is important to note that organizationally, some key functions like licensing and inspections, and investigations are administered out of the central office, while other oversight functions (e.g., contract monitoring and case management) are carried out by the regions.

DMR Resources

• DMR's total FY 03 budget is $722 million. Of that total, $292.4 million (40.5 percent) is allocated for community living arrangements -- including $192.5 in contract payments going to private providers.
• Figure I-7 shows the growth in the DMR expenditures from FY 95 through FY 02. (See Chapter II for details on CLA expenditures.)

• As of June 30, 2002, DMR employed 4,330 full-time and 1,373 part-time employees. Combining full- and part-time personnel, 137 people (2 percent) work in the DMR central office and 3,628 (64 percent) work in the regions, while 1,938 (34 percent) work at Southbury.

Waiting and Planning Lists

Because DMR residential services are not an entitlement, not everyone who wants or needs a residential placement can get one, resulting in a waiting list and a planning list.

• The waiting list includes people who seek residential services for the first time from DMR, assuming they either are, or are eligible to be, DMR clients. They are currently living in their family homes or on their own.
• There are also DMR clients already in a DMR residential placement or in some other setting like a nursing home, but need or want to live somewhere else for a variety of reasons. Because of the same resource problem, these people are placed on the planning list.
• As of June 2002, 1,665 people were on DMR's waiting list for residential services.

_ 37 have emergency priority (need placement within 3 months)

_ 573 have Priority 1 status (need placement within one year)

_ 419 have Priority 2 status (need placement within two years)

_ 636 have Priority 3 status (need placement within three years)

• As of the same date, 760 people were currently on the planning list

_ 23 have emergency status; 487 are Priority 1; 116 are Priority 2; and 134 are Priority 3

• There are certain circumstances in which residential placement has to occur, including:

_ court-ordered placement of persons in the criminal justice system;

_ placement of children formerly under the custody of DCF, who have mental retardation, and have "aged out" of DCF jurisdiction; and

_ placement of persons in mental health settings who also have mental retardation.

• DMR also has memoranda of agreement with the Departments of Children and Families and Mental Health and Addiction Services regarding residential services delineating when DMR becomes responsible for former DCF or DMHAS clients.

Other Pressures

• In Olmstead v. L.C, the U.S. Supreme Court held in 1999 that under the Americans with Disabilities Act, states are required to provide the least restrictive setting determined appropriate for a person (e.g., the community), including persons with mental retardation, if that person does not oppose such a setting, and the placement can be reasonably accommodated by the state.
• A lawsuit is pending in Connecticut charging that the waiting list for residential placement and services in Connecticut violates the Americans with Disabilities Act.

Summary

• The Department of Mental Retardation has evolved into an agency providing or funding residential supports in a variety of settings - (from home to a large institution) - to a broad population of mentally retarded clients with varying health and behavioral issues. The scope of this investigation is to examine how well the department is balancing care for people in their communities while still ensuring their health and safety.

¹ A genetic disorder with physical and cognitive problems, including a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity