REHAB Bringing Research into BRIEF Effective Focus Vol. XVI, No. 2 (1994) ISSN: 0732-2623 NATIONAL INSTITUTE ON DISABILITY AND REHABILITATION RESEARCH OFFICE OF SPECIAL EDUCATION AND REHABILITATIVE SERVICES DEPARTMENT OF EDUCATION WASHINGTON, D.C. 20202 * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * SUPPORTED EMPLOYMENT FOR PEOPLE WITH SEVERE MENTAL RETARDATION Just over a decade ago, dissatisfied with their possibilities for personal fulfillment and integration in traditional developmental programs and sheltered workshops, people with severe mental retardation and their advocates began to seek opportunities for paid work in integrated community settings. Beginning with only a small number of demonstration projects, supported employment (SE) has since evolved into a major national thrust and has created unprecedented employment opportunities for people previously perceived as too severely disabled to engage in meaningful work. (See Rehab BRIEF Volume 14, Number 3, "New Directions in Supported Employment.") Supported employment represents a major shift away from traditional job preparation models. Rather than relying on lengthy, often indefinite, training programs to get people "ready" for competitive employment, SE has demonstrated the validity of the place/train approach--training people in the same work environment in which they will be employed, with ongoing supports for both employees and employers. Severe mental retardation, even in the presence of other disabilities, need not bar a person from successful I integrated employment. Many in SE provide valuable services and experience quality-oflife improvements far in excess of their past sheltered work or day activities. While over 75,000 individuals have gained access to employment with long-term supports since 1984, when SE was officially defined, the primary recipients of service have, in fact, been those with mild mental retardation. Data from a 1990 survey show that only 12.2 percent of those served are people with severe mental retardation. There is mounting concern that the growing popularity of SE for people who need less complicated supports is having the result of excluding people with severe mental retardation, the very population for whom the concept was conceived. Supported Employment for People With Severe M ental Retardation was the topic of the fifth in a series of nine Consensus Validation Conferences sponsored by the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education (see sidebar). This Rehab BRIEF presents the findings of that conference, describing the present status of SE for people with severe mental retardation and current best practices in this field. CHARACTERISTICS OF PEOPLE WITH SEVERE MENTAL RETARDATION PRESENTLY IN SE While people with severe mental retardation in SE have significantly lower functional academic skills than others in SE, one-half to two-thirds demonstrate some form of time-telling, simple computation, and/or word recognition abilities that can enhance their employment experience. Measures of work-related behaviors show that people with severe mental retardation entering SE demonstrate fewer specific work-related behaviors than those with mild or moderate mental retardation. Areas of most significant deficit include physical strength, orientation in buildings or grounds, appropriate social interaction, the ability to sequence four or more tasks, and readiness to accept criticism. People in work, however, tend to increase in such workrelated skills. People with severe mental retardation in SE have a higher incidence of secondary disabilities than others in SE. One study estimates that between 13 and 25 percent of consumers with severe mental retardation also have significant impairments in vision, hearing, ambulation, manual dexterity, and communication skills. [BEGINNING OF SIDEBAR #1] Belief that people with severe mental retardation can be fully integrated into employment is seen as more important than any specific skills for implementation. If agency administrators and support personnel believe that people with severe mental retardation should work, and are capable of performing valued work, then success is more likely . [END OF SIDEBAR #1] About half of those people with severe mental retardation involved in SE have earned some money by working in the past, but almost all were in segregated employment; fewer than 9 percent have held community-based jobs in the past. One study showed the average annual wage prior to SE was about $557; in SE, people with severe mental retardation work an average of 22 hours a week and earn about $3.50 an hour. About one-third receive some benefits such as company sick leave or vacation time. It is generally true that people employed through the SE individual placement model earn significantly more in money and benefits and experience more integration than people in group placements such as workshops, enclaves, or work crews. They realize more positive personal goals and experience greater self-determination. While income, benefit, and inclusion outcomes must still be improved, they are far superior to outcomes associated with the past segregation of people with severe mental retardation. CHARACTERISTICS OF SUCCESSFUL SUPPORT IN SE Interventions that have been shown to contribute to successful employment outcomes have several features in common. - Successful SE occurs within a support system that extends beyond the workplace. People with support systems that enable full participation in community life are more likely to have opportunities to become successfully employed. - Success in the workplace and full participation in community life are dependent on intentional strategies. Because many basic work-related behaviors are present to a lesser degree in people with severe mental retardation than others in SE, individualized planned instruction and direct service interventions are most effective. - The most successful programs are primarily consumer-driven; while the input and guidance of professionals is vital, the process is not driven by human service professionals. - People with severe mental retardation who are successful in the workplace depend on involved advocates to ensure that their choices and support needs are realized in employment and community settings. Long-term involvement of family or other advocates ensures continuity in services and longterm supports. - Belief that people with severe mental retardation can be fully integrated into employment is seen as more important than any specific skills for implementation. If agency administrators and support personnel believe that people with severe mental retardation should work, and are capable of performing valued work, then success is more likely. CHARACTERISTICS OF SUCCESSFUL STRATEGIES IN SE Several ingredients are regarded as essential for successful SE. Each of these is driven by the commitment that people with severe mental retardation can succeed in supported employment. - Successful supported employees benefit from values-based comprehensive planning. An ideal plan utilizes natural and integrated settings within the community and involves community activities and local businesses. - Consumer choice drives the process. Successful SE means creating options that reflect meaningful choices for the person with severe mental retardation. An ideal plan is individualized and recognizes each potential worker's likes and dislikes, strengths and weaknesses. - Involvement of families or personal advocates has proven to be a vital element in the success of SE. In the best programs, family members are seen as equal partners in the process by providing unique personal information and articulating which roles and responsibilities they can accept. - A carefully designed system of supports links SE workers with community resources, such as residential supports, health care and social security expertise, recreation and leisure supports, personal assistance for daily living, assistive technology, or transportation options that address each person's unique circumstances and enhance work success. This strategy has emerged as so important that many people in the field prefer the wider term supported life to the term supported employment. - Successful outcomes are dependent on a system that provides opportunities for ongoing state-of-the-art training and technical assistance. People as well as strategies and technologies are constantly evolving. In successful SE programs, individuals with severe mental retardation experience ongoing skills training, and they, along with professionals, employers, families, and other advocates, are provided with continual updates on best practice strategies, technologies, federal and state policy changes, and other issues. - Organizations successful in implementing SE make use of ongoing evaluation of program effectiveness. Such evaluation is driven by the values of SE and includes both a quantitative and a qualitative focus. Agencies track the individuals who are employed, in terms of the services they are receiving, their wages, hours of employment, benefits, as well as their level of integration, job satisfaction, and quality of life. As organizations mature, they also gather information regarding the length of time it takes to secure a job and the relationship between individual, specific issues and employment success. In addition, an increasing number of organizations actively seek employer feedback through surveys, focus groups, and individual interviews. - The most effective organizations treat their support personnel well. They use management structures that emphasize staff support. Staff are well trained; staff development and training are ongoing and focus on competencies that are relevant to staff needs. Communication is open and the staff have a sense of empowerment within the organization. Typically teams are formed that do relationship building, joint problem solving, and information sharing. [BEGINNING OF SIDEBAR ON CONSENSUS VALIDATION CONFERENCES] The National Institute on Disability and Rehabilitation Research (NIDRR) convenes Consensus Validation Conferences in order to evaluate and synthesize available scientific data and improve the dissemination of findings from rehabilitation research. The consensus validation process attempts to close the gap between research and practice by clarifying the state of the art and best practices in particular areas of rehabilitation. Problems affecting work and community living are emphasized; their resolution is facilitated by distinguishing what is known from what is not yet known. Each NIDRR Consensus Statement is prepared by a nonfederal 10-member panel, based on (1) resource papers prepared by experts: (2) testimony presented by researchers, clinicians, and consumers during a public hearing; (3) closed panel deliberations, during which the Consensus Statement is prepared. Each Consensus Statement is an independent report of that panel and does not represent policy of NIDRR or the federal government. Each Consensus Validation Conference operates as a "Court of Science." A group of conference questions constitutes the charge to a "jury" of experts; the Consensus Panel makes up this jury. The testimony provided by professionals and consumers constitutes the "evidence."The panel weighs the evidence and reaches a consensual "verdict," which is published and widely disseminated. However, unlike a typical court model, the audience is encouraged to ask questions, make comments, and provide further evidence. It is anticipated that practices discussed in Consensus Validation Statements will be adopted by practitioners and consumers, as they represent recent research and best practices. [END OF SIDEBAR ON CONSENSUS VALIDATION CONFERENCES] CHARACTERISTICS OF EFFECTIVE RELATIONSHIPS WITH EMPLOYERS Strong and positive connections with employers are essential to successful long-term employment of people with severe mental retardation. SE professionals skilled in job development and marketing help forge and sustain partnerships with employers. Successful SE programs have moved from "cause" marketing (i.e., promoting SE as a "good cause") to "customer" marketing. No longer appealing to employers on the basis of altruism or mere goodwill, successful SE programs for people with severe mental retardation regard employment development as a highstatus, high-priority effort and emphasize cost benefits to employers. One vehicle by which SE providers have been helpful to employers is through discussion of the Americans With Disabilities Act (ADA). Because employers often have misperceptions about the ADA, SE professionals have begun to take the opportunity to provide ADA-related education and technical assistance. Such activities, by meeting employers' needs, help strengthen partnerships between SE agencies and employers. In addition, an increasing number of SE programs have cemented positive relationships with employers by making use of what they call natural supports-resources for employee support common to most workplaces. Companies both large and small routinely assign both money and human resources to recruiting, training, retraining, and retaining their employees. SE providers have found that tapping into these supports (as well as other employer resources such as employee assistance programs, co-worker mentors, coworker teams, training departments, and trade associations) is a strategy that promotes successful SE outcomes. Successful supported employment/employer partnerships are characterized by the following concepts. - There is mutual interest in the success of each party's enterprise. SE programs that demonstrate sincere interest in the employer's operation have had success attracting employer partners. - Each party invests in relationships for the long term. - Features of SE are matched to the needs of employers. Features such as job analysis, job matching, training, positive behavior support, and long-term followup are regarded as benefits by employers. - SE providers can offer consultation and advice on job and task design which result in greater efficiency of all workers. LEADERSHIP AND MISSION REFLECT THE VALUES OF SE In organizations that are successfully supporting the employment of people with severe mental retardation, the leadership's vision and commitment to SE are described as critical to success. Belief in and commitment to the concept of SE are regularly cited as the two elements most essential for positive outcomes. In such programs, the leadership, staff, clients, and advocates share a mission that reflects certain values about SE. - Effective organizations place a high value on community-based, well-paid employment opportunities. - Individuals with severe mental retardation are seen as active participants in the fabric of the workplace and community. - Effective organizations have shifted from an attitude of providing services to a concept of facilitating supports. - Effective organizations are committed to the longterm process of providing supports and have the stability to do so. IMPLICATIONS FOR PRACTITIONERS The integrated community-based approach to providing training and employment for people with severe mental retardation has been shown to be far more effective than traditional facility-based day centers and sheltered workshops. However, many agencies have been willing to adopt SE only as a small component of their existing facility-based designs. How can practitioners effect change, so that more people with severe mental retardation can benefit from SE? Implementation of best practice nearly always comes from the grass roots. The motto "locals lead" is a basic tenet of change theory. Change usually begins at the local level, brought about individuals who believe in a concept and are committed to it. In the move from traditional models for people with severe mental retardation to the SE concept, there is a fundamental shift in the roles and relationships of people with disabilities and providers--a virtual "overhaul of mission" for many agencies. In order to embrace SE, a human service organization must be committed to inclusion and be willing to focus on individuals instead of numbers. Rehabilitation practitioners who support the values and strategies of SE can help bring about such organizational transformation. They must recognize that patience and persistence are needed as typically an organizational community first resists, then debates, and finally creates a foundation for the future. Such change is usually evolutionary, but it is happening all over the country and benefiting not only people with severe mental retardation but also employers and the wider community. SOURCE Supported Employment for People With Severe Mental Retardation. Copies of the Consensus Statement are available from: Mr. James E. Doherty Room 3423 Department of Education The National Institute on Disability and Rehabilitation Research 400 Maryland Avenue SW Washington DC 20202-2646 (202) 205-9151 We welcome your comments on this BRIEF and on BRIEFs put out during the past year, as well as your suggestions for topics and for improving this publication of Conwal Incorporated. Prepared by Conwal Incorporated, 510 N. Washington St., Suite 200, Falls Church, VA 22046. =-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- This document was scanned into electronic form for ABLE INFORM BBS: 301/589-3563 or FTS 301/427-0280 (data); Silver Spring, MD USA Internet telnet: fedworld.gov, then dd115 from the Top Menu Internet mail: naric@cap.gwu.edu Electronic release date: May, 199