Impact Feature Issue on the ADA and People with Intellectual Developmental, and Other Disabilities
Twenty-five Years After ADA Passage:
What Story Does the Data Tell?
In 1990, the Americans with Disabilities Act (ADA) was enacted to break down barriers to employment, transportation, public accommodations, public services, and telecommunications for individuals with disabilities. Its enactment illustrates our nation’s obligation and commitment to reject discrimination based on disability, and to support participatory community lives for all individuals. In this article, we describe two national research efforts – the National Core Indicators and the Personal Outcome Measures® – and what their data tell us about the performance of service systems and the outcomes they generate for people with intellectual and developmental disabilities (IDD) in employment, choice and rights, and community participation. It tells us where we’re at 25 years after passage of the ADA.
The National Core Indicators Program
The National Core Indicators (NCI) program is a voluntary effort by state developmental disability agencies to evaluate their performance using a common nationally validated set of measures. The effort began in 1997 and is coordinated by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) in collaboration with the Human Services Research Institute (HSRI). NCI includes a set of more than 100 standard performance measures (or “indicators”) in areas such as: employment, rights, service planning, community inclusion, choice, health, and safety. NCI uses four main surveys to collect this information – an in-person Adult Consumer Survey as well as three mail-out surveys to families. Currently, there are 42 states (including the District of Columbia), and 22 sub-state entities participating in NCI. The information presented here reflects data from the 2012-13 Adult Consumer Survey data collection cycle.1
The Personal Outcomes Measures®
In 1993, the Council on Quality and Leadership (CQL) introduced the Personal Outcome Measures® (POM) that includes 21 outcomes grouped in three factors: (1) My Self – personal, physical, and environmental outcomes; (2) My World – connectedness and life in the community; and (3) My Dreams – discovery, choice, and self-determination. The POM is a valid and reliable tool that can be incorporated in human services systems for people of all ages receiving mental health, aging, and/or IDD services. It focuses on the choices and control people have in their lives. It is an instrument for evaluating quality of life for people, and the degree to which organizations individualize supports to facilitate outcomes. The data included here are drawn from interviews conducted with individuals receiving IDD services from organizations (or funded through State agencies) participating in CQL’s accreditation processes in 2013. A total of 350 agencies are currently CQL accredited.2
In 1990, the ADA recognized the importance of employment not just for its economic benefits, but as a central component of living an engaged life. Today, employment remains a central issue for individuals with IDD. Recent data illustrate that people with IDD are underemployed, and lack the vocational choices and benefits afforded to others. NCI data from 2012-13 show that employment rates for people with IDD remain stagnant at around 15%, and of those employed, only 3% work an average of 35 hours or more per week. Only one-quarter receive paid vacation or sick time. Data collected by POM indicate that in 2013, only 43% of participants identified as having a choice of where they work, with only 34% of those having supports to make the choice.
For people with IDD, making sure an integrated employment goal is in their service plan is an important step to finding employment. NCI data show two and a half times as many people who had a job in the community had an integrated employment goal in their service plan.
Outcomes in a number of domains in both NCI and CQL show significant differences for those who are employed compared to those who are not. Those employed reported higher rates of satisfaction and respect, more expanded and interactive relationships, more autonomy, higher rates of both choosing and realizing personal goals, and greater participation in volunteering and community activities. Further, those who were employed cited fewer instances of feeling afraid in their homes and were less likely to feel lonely. As suggested by the ADA, these outcomes show that the benefits of being employed extend far beyond economic self-sufficiency to the ability to lead a more fulfilling life.
Choice and Rights
NCI Adult Consumer Survey data over several years indicate that the overall rates of choice and decision-making related to where people live, work, and what they do during the day differ greatly by residence type, with those who live in their own home reporting the greatest amount of choice compared to those living in an institution, community residence, family home or foster care. Those who reported having some input in choices, such as where and with whom they live, their daily schedule, and how they spend their free time, tended to show higher rates of satisfaction with where they live and what they do during the day. CQL POM data indicate that 70% of interviewees say they exercise their rights. Figure 1 illustrates the impact of being able to decide where one lives, and Figure 2 the impact of being able to exercise one’s rights on outcomes such as participating in the community or feeling respected.
The ADA insists that community participation is a right for ALL citizens. In general, CQL and NCI data reveal that most people receiving services take part in community activities. CQL’s most recent data indicate that individuals participating in the community are more connected to natural support networks, perform different social roles within their communities, have friends, and have higher rates of intimate relationships. NCI data indicate that nearly all respondents went shopping, ran errands, went out to eat, or attended religious services in the past month; most reported doing each of these activities 3-4 times per month. Having access to transportation is key to an individual’s ability to access the community. Not surprisingly, those who report always being able to get to places where they want to go report going out in the community at higher rates and more frequently throughout the month.
NCI data reveal that individuals who use aids to move or are non-ambulatory are less likely to access transportation at any time and to engage in community activities. While 89% of those who were fully ambulatory reported going out to eat in the past month, 80% of those needing some support did so; similar findings were true for going out shopping, on errands, for entertainment, to religious practice, and for exercise. These findings exemplify that though most people have basic access to community activities, there are still barriers, particularly for those who require more assistance.
Twenty-five years after enactment of the ADA, the correlation between employment, choice, rights, public access and community participation remain evident for people with IDD. Positive outcomes in one area influence positive outcomes in others. Data from 2013 illustrate that those leading lives with more choice, control, and public access are achieving more self-defined personal outcomes. The ADA, in combination with other national efforts (e.g., Employment First Initiatives, advocacy initiatives, HCBS waiver reforms, self-determination movement), has led to great system reforms and achievement of personal outcomes. Yet, much work remains. While data illustrate high percentages of individuals with IDD participating in community life, employment statistics for people with IDD remain depressingly low, and choice and control are still not present for a significant portion of the population.
The NCI and CQL assessment initiatives serve an important role in providing reliable and valid data to monitor and evaluate the outcomes as well as experiences of people with disabilities in U.S. society. The findings provide systematic evidence about the way ADA has been followed and implemented over time to improve the lives of persons with disabilities. This should suggest to policymakers, advocates, and others that while progress has been made, there is still a long way to go before people with IDD enjoy all of the promises of the ADA.