Having a job at which one earns money is considered a typical role for an adult. Employment provides much more than income and access to benefits (e.g., insurance, paid time off, retirement). For most, working and having a career are critical parts of developing relationships, having a sense of purpose and meaning, having choices, and gaining respect. Employment is a common way for people to have valued social roles in which to meaningfully and consistently contribute to the well-being of others. These valued social roles provide opportunities for positive interactions that keep people connected. People who are unemployed or underemployed have limited opportunities for social, economic, and personal growth.
Many people with IDD can and do work in the community and are earning at least minimum wage. However, the majority of people with IDD in the U.S. do not have a paid job in the community. Most spend their days in facility-based work or community-based non-work programs. Because having a job is a critical part of community life and participation, a revitalized push has emerged recently to focus on policies and practices that support and invest in community-based employment options for people with IDD. There is also a great deal of evidence that shows that people with IDD can successfully work in the community with and without supports. Supported, customized, and self-employment are all examples of how employment in the community can be facilitated and supported.
Given the social and economic benefits of employment to both people and communities, the case can be made that pathways to fulfilling careers and integrated, meaningful employment should be accessible to all people, and that services and supports should facilitate, rather than prevent employment. Employment for people with IDD should be an expectation rather than an exception. Policies at the state and federal level are shifting to reflect a move toward expectations of employment for all people regardless of disability.
Models to support employment
The desire to work is one of the most important factors to getting a job, and many people with IDD do want to work. Some people use formal services from a provider to help find, secure, and maintain a job. Others rely on family and friends for support. There are a number of different models that may be used to support employment. Customized employment, supported employment, and self-employment are three models that support competitive, integrated employment in the community. However, there are many employment programs that have pre-vocational services, group employment (enclave), job training, and or facility-based employment.
Current employment statistics and data about how, when, and where people with IDD are working help us better understand the effectiveness of employment policies, services, and programs. This information tells us how the system is performing and how well groups of people with disabilities are doing in a job. Data about if people work, where people work, how much they earn, how many hours they work, and what benefits they receive tells a story about the significance of employment for people with IDD in our communities. It is also important to collect and explore data about systems and policies. How government, states, and communities invest in employment services can tell us a lot about what supports people may or may not be getting.
Economic well-being means having financial security. This includes the ability of individuals, families, and communities to consistently meet their basic needs, including food, housing, utilities, health care, transportation, education, child care, and clothing, and have control over their day-to-day finances. Economic well-being also includes the ability to make economic choices and feel a sense of security, satisfaction, and personal fulfillment with one’s personal finances and employment pursuits. When an individual or family is unemployed, underemployed, or living in poverty – factors that disproportionality affect people with disabilities – it is very difficult to maintain economic well-being.
A large number of adults with and without disabilities engage in volunteering activities, allowing them to meet new people, providing them with the opportunity to learn new skills, to build their confidence, and to contribute to society. Like paid employment, volunteering is one way in which people with IDD can participate in society and receive recognition for their engagement. Basic needs, personal motivation, and social recognition are central for volunteers with IDD.
Retirement usually means leaving paid employment, and this happens at different ages for different people. For many people with IDD, the transition to retirement is not driven by financial considerations and their living arrangements may not change. What may change is the focus of daily activities – from employment to socialization – and the degree of choice one has in determining daily activities. Becoming a retiree is generally a function of agency policy and staff supports if one lives in a setting managed by a provider agency. If the adult lives at home with family supports, very little may change.
Older adults with IDD, whether at home or in residential services provided by an agency, experience very little self-determination about retirement decisions. Instead, transitions are often dictated by ill health. There are, however, retirement transition models that have been successful in keeping individuals engaged meaningfully in their communities.