Written Testimony William E. Kiernan, Ph.D. Director, Institute for Community Inclusion University Center on Developmental Disabilities University of Massachusetts Boston and Children's Hospital Boston

Meeting of March 15, 2011 - Employment of People with Mental Disabilities

Chair Berrien, Commissioners Feldblum, Ishimaru, Barker and Lipnic, General Counsel Lopez, and members of the panel, I am William E. Kiernan, PhD, Director and Research Professor of the Institute for Community Inclusion, a University Center for Excellence in Developmental Disabilities located jointly at the University of Massachusetts Boston and Children's Hospital Boston.

The ICI is one of 67 such centers that make up the network of University Centers of Excellence in Developmental Disabilities and is part of the Association of University Centers on Disabilities (AUCD). Our center has worked extensively in supporting the employment of persons with disabilities and has been involved in supporting postsecondary opportunities for youth with developmental disabilities under the work of the Consortium to Enhance Postsecondary Education for Individuals with Developmental Disabilities funded by the Administration on Developmental Disabilities, expanding employment options for persons with disabilities served by state public Vocational Rehabilitation and Developmental Disability agencies in several states and enhancing the capacity of the local One-Stop Career Centers supported by the Local Workforce Investment Boards (LWIBs) of the state Departments of Labor. I am pleased and honored to have been asked to comment on the issues associated with the accessing and maintenance of employment by persons with disabilities.

I have organized both my verbal and written presentations around four questions that Commission staff asked me to address. Additionally, in my written testimony I am including some more specific suggestions as to areas where some approaches may be considered given the changing demographics, the labor market and the need to change the employment and training services for persons with intellectual disabilities.

Question 1: What are the employment/unemployment rates for people with intellectual disabilities?

In responding to this initial question I will be presenting data on employment and unemployment rates of persons with intellectual disabilities over time as well as at a point in time. These data will be drawn from a number of sources; thus there will be some minor variations in the numbers presented. What may be the best representation of how persons with intellectual disabilities are doing with regard to employment is the labor force participation rate. This is the percentage of persons from the total universe of persons with intellectual disabilities who are working. This rate can be easily compared to the rate of persons without disabilities and can provide a somewhat more accurate representation of what employment looks like for persons with intellectual disabilities. The second section of the response looks at some of the changing demographics and how these may have the potential to influence employment of persons with intellectual disabilities in the coming years.

A. Trends in Labor Force Participation and Unemployment

When considering the workforce of today and the current impact of the recession there are some considerable areas of concern that must be addressed. There are populations where the labor force participation rate is and has been quite low as in the case of persons with intellectual and developmental disabilities, where eight out of ten are not in the labor market. Persons with mental illness have a somewhat lower labor force participation rate (15%). Coupling the apparent declining labor supply with the low labor force participation rate for persons with disabilities (nationally 34.9% of working age adults with any disability and 23.9% with a cognitive disability were employed in 2009 compared to 71.9% for working age adults without a disability as reported by the American Community Survey), there is clear underutilization of persons with intellectual disabilities and mental illness in the current labor force nationally.

When considering unemployment rates, the US Bureau of Labor Statistics reported the unemployment rate for people with disabilities, meaning those who are not working and are actively seeking work, for December 2010 at 14% compared with 9% for people without a disability. BLS did note that the same period only 21% of all adults with disabilities participated in the labor force as compared with 69% of the non-disabled population (December 2010 Current Population Survey). Correspondingly, for those individuals with disabilities who are employed, their earnings are considerably less than the earnings for persons without disabilities. According to the 2009 American Community Survey, on average people with any disability earned 30% less from work annually than the average amount earned by people in the general population and people with a cognitive disability earned less than half what the general population earned from working.

The impact of not being in the labor force is often a life in poverty. Again as noted in the American Community Survey (2009), only 13.4% of those persons without a disability live in households below the poverty threshold while 26.5% of those having any type of disability live below the poverty threshold. For person with intellectual disabilities who are receiving SSI that percentage rises to 42.3% living below the poverty threshold.

Data collected by the Institute for Community Inclusion at the University of Massachusetts Boston in its annual data collection report (StateData: the National Report on Employment Services and Outcomes 2009) note that only one in five persons with intellectual and developmental disabilities served by the state Developmental Disabilities agencies received integrated employment services (were employed in integrated employment, supported employment or self employment) in 2009 or a total of 114,004 individuals served in such settings. (Butterworth, Smith, Hall, Migliore & Winsor, winter, 2011). The remainder of persons with intellectual disabilities served by the state Developmental Disabilities agencies was served in facility-based and non-work settings (Butterworth et. al., 2011). There has yet to be a year since the start of this data collection effort in 1988 that more persons with developmental disabilities have been served in integrated employment than sheltered and non-work settings. In fact, the percentage of persons with intellectual and development disabilities in integrated employment served by state Developmental Disability agencies has shown a decline over the past ten years (from 24.7% in 2001 to 20.3% in 2009). In line with the stagnant growth in the percentage of persons with developmental disabilities served in integrated employment, those states able to report the allocation of funds for day and employment programs noted a reduction in the percentage of total funds allocated to integrated employment from 2001 (16.6%) to 2008 (11.6%), a 30% reduction.

There has been considerable discussion about the status of earnings and wage payments for persons in competitive integrated employment as well as sheltered employment. Data on earnings collected in 27 states through the National Core Indicators project (NCI, 2008-2009) report that the average weekly earnings of those consumers served in facility based work settings was $29.00 per week while for those in competitive integrated employment the average weekly earnings were nearly 4.0 times that, or about $111.00 per week. Those individuals with developmental disabilities served in supported individual and group placement earnings were somewhat less at $97.00 and $69.00 respectively. It should be noted that most worked about 15 to 17 hours per week.

Research on costs and benefits shows some considerable promises on the effectiveness of supported employment services for persons with intellectual disabilities. Cimera (2009) noted that when reviewing all of the clients with a diagnosis of mental retardation in the RSA 911 data system from 2002 thru 2007 (a total of 104,213 clients) there are clear data to show that supported employment is more cost effective and economically efficient. He found a positive average net monthly benefit to taxpayers for the typical individual having a diagnosis of mental retardation. This benefit to taxpayers on a monthly basis was $133.10 and the benefit-cost ratio was 1.21. Stated more simply, for every dollar taxpayers expensed as a result of supported employment, they received in return $1.21. In this same study it was noted that while supported employees served by the VR system acquired more governmental subsidies after applying for VR services than they received prior to applying for services there continued to be a positive cost benefit to supported employment services for persons with intellectual disabilities.

When considering the rates of labor force participation nationally, the percentage reported has the effect of masking the variances that exist across states. The ICI data collection of state Developmental Disability agencies has consistently shown great variability from state to state when reporting the percentage of persons served in integrated employment, from 4.5% to 86% at an individual state level (Butterworth et. al., 2011). This variability is reflective of how states have embraced the concepts of employment and the priority that is placed in policies, procedures and practices within an individual state. It should also be noted that this variability across states is not just within the state Developmental Disability agencies but also the Vocational Rehabilitation agencies even though that system has a strong national base legislatively and programmatically.

The issue of under expectation for persons with disabilities is present not only in the adult services system but the education system as well. Even given the growing emphasis on the participation of students with intellectual disabilities in postsecondary education, families report that at the time of planning for transition few of the teachers and support staff suggest postsecondary as an option (Grigal & Dwyre, 2010). The movement to utilization of postsecondary options for these students, though new, is showing some promise for greater employment outcomes for student with intellectual disabilities. Interestingly, there are some clear indicators that the impact of education and job training for persons with mental illness is positively related to access and employment retention (Gao, Gill, Schmidt & Pratt, 2010).

Data reported through the RSA 911 data set note that for those students with disabilities (intellectual disabilities) there was a higher rate of participation in employment upon completion of the rehabilitation process (26%) than those who did not have any PSE experiences (Grigal, Hart & Migliore, 2010). Additionally earnings for those having PSE experiences were 73% higher than those who did not.

B. Some Economic and Demographic Trends to Consider:

Over the past decade it has become more apparent that there will be a shortage of workers to meet employer demands. Even given the current economic downturn, with the declining birth rate as well as the aging of the current workforce, most industries are realizing that their growth will more likely be limited in the long term by the declining labor supply and not the economy in general. A recent report published by the Federal Reserve Bank of Boston notes that in the New England region, while there are 10% more workers than there are positions to fill in 2010, there will be 15% more jobs to fill than workers available in 2018 (Modestino, 2010). About one third of these jobs will be entry level or lower skilled jobs, those that would be suitable for young workers or workers without considerable employment experiences such as persons with developmental disabilities or significant mental illness. These positions can serve as the gateway to career development for persons with disabilities in the coming years.

The aging of the workforce will also be a factor in the employment of persons with disabilities in the future. By the year 2018 the cohort of workers over the age of 55 will increase to 23.9 percent of total workforce, the largest single age group in the labor market. Additionally, in that same time period there will be more than 50.9 million jobs either replaced or created with the vast majority, two thirds replacement positions, creating an excess of demand over supply for the workforce of 2018 (http://www.bls.gov/oco/oco2003.htm#Labor%20Force). The service occupations will have a replacement need in excess of 7.6 million in this ten year period.

While it is difficult to predict the level of acquired disability resulting from the normal aging process, the older workforce will mandate that employers look to accommodations for these workers to both maintain productivity as well as maintain a workforce in general. The accommodations that will most likely be effective will be those that will also have applicability to persons with intellectual and developmental disabilities (Fesko, 2009).

There is a growing interest in the fostering of flexibility in the workplace both to accommodate a more diverse workforce (two persons working families, single parent households, older workers, cultural and religious diverse needs and unique personal needs of the employee) as well as provide employers with a sufficient workforce in the future. The interest in having Flexible Work Arrangements (FWA) was reinforced through a document published by the Workplace Flexibility 2010; Georgetown Law School http://workplaceflexibility2010.org/images/uploads/reports/report_1.pdf that calls for a new national initiative that will engage both the public and private sectors in offering a work environment and schedule that will meet the ever-changing needs of the individual worker.

While much of the effort around FWA is directed at responding to the current workforce, and particularly older workers, the opportunities for creating a workplace that responds to the emerging workforce of the future is apparent. In a series of focus groups conducted by the New England Council, Northeastern University and the Institute for Community Inclusion more than 140 employers based throughout the New England region participated in small group discussions addressing the needs of the older worker and the changing workforce of the future (Fesko, 2010). In these discussions, attending employers made a number of suggestions about how they might support increased flexibility including phased or modified retirement options, job flexibility (in work schedules, workplace locations, job sharing, and seasonal employment schedules), comprehensive benefits packages (retirement plans, wellness programs, investment and personal counseling), professional growth and development opportunities and workplace accommodations (work task modification in high physical demand jobs). Many of these accommodations would facilitate the hiring and maintenance of workers with disabilities.

In this context the use of universal design solutions could offer great promise to employers. Universal Design Solutions for Employment address the emerging workforce through the development of business policies, practices and procedures that consider a broad range of needs. This is a proactive approach to establishing simple, flexible and efficient policies and strategies that provide optimum outcomes for all stakeholders throughout the work life cycle. Whether an employee's diversity is represented in ethnicity, age, disability, language, or literacy levels, the principles of flexibility, ease of use, and efficiency will promote a welcoming internal culture, and can enhance productivity and broaden the customer base. Core areas addressed through the implementation of Universal Design Solutions for Employment include: organizational culture, supervision and management, flexibility in the workplace, welcoming and accessible environments and communication.

Interestingly enough, the approaches to supporting the current older worker as well as the reengagement of the retired older worker are more similar than dissimilar to those utilized in accessing the untapped labor pool of workers with disabilities. Workplace modifications and accommodations that are universally applicable to the diverse workforce of today, including older workers, workers with disabilities and immigrant workers, offer promise for employers to have a qualified workforce in the coming years.

Question 2: What are some of the explanations or reasons for the high unemployment rates/barriers to employment?

The reasons for the low labor force participation rate for persons with intellectual disabilities are complex and involve issues around employer perspectives, systemic barriers, provider practices, individual and family concerns and funding issues. The following present briefly some of these barriers in more detail.

Employer perceptions regarding persons with disabilities in the workforce remain a factor in the outreach of employers to persons with disabilities. However, as was noted above, the retention of the older worker has increased the recognition and capacity of employers and mangers at all levels to support workers who have been loyal and who, either because of a traumatic experience or the normal aging process, acquired limitations that require job modifications. Many employers will automatically adjust work schedules so that these employees who have been loyal to the company, are part of the institutional memory of the company, and are well integrated into the existing workforce can remain a worker in the company. Interestingly, often these employers will not assume that the individual employee has a "disability" but rather a health condition that can be addressed.

Some employers, observing the changing demographics, have been more aggressive in modifying the workplace to accommodate the needs of the future workforce. Such modifications include increase use of technology, visual images, automation and limitations in physical demands. Even given these changes, it is not uncommon for employers to indicate that they are not able to find workers with disabilities when they have a hiring need. As noted in the most recent Harris Poll (NOD, 2011), nearly four in ten employers reported difficulty finding qualified candidates with disabilities with two out of three citing the lack of such candidates as a barrier to hiring (http://nod.org/assets/downloads/01-2011_Exec_Summary.pdf).

A systemic barrier to employment is the strategies that have and continue to be utilized to find jobs for persons with disabilities. While studies have documented that the family and friend network is a very effective strategy in finding employment for persons without disabilities, this network is not utilized as often for persons with disabilities. Additionally, with the massive changes in technology, the advertisement of job openings occurs more often through the internet than word of mouth or print. The capacity to search electronically all Web pages and create lists of job openings sorted by knowledge, skills and abilities is already in use in some labor sectors. The reliance on cold calls, personal network and print searches are no long the primary ways employers identify or reach potential employees. They are using the internet and on line job systems. It is crucial that the job development efforts of the public and private employment and training systems for people with disabilities embrace the technology that exists and more aggressively match individual interests and skills to labor market demands.

There are a number of other barriers to employment that according to Migliore et. al., 2008) can be grouped into eight categories (1) long-term placement, (2) safety, (3) work skills, (4) social environment, (5) transportation, (6) agency support, (7) disability benefits and (8) systems of service. This list outlines many of the challenges that persons with intellectual and developmental disabilities face when considering employment. However, it should also be noted, as was stated earlier, expectation can play a significant role in employment. For some individuals the expectation of employment as a realistic outcome, particularly among those who are responsible for the planning and implementation of the transition process and the provision of employment and training services, can seriously impact employment outcomes. Other challenges are the limited expertise among staff in schools and Community Rehabilitation Programs (CRPs) in understanding effective practices in indentifying employment options, making job matches and supporting individuals using natural supports as much as possible. There is a considerable training and technical assistance effort that is needed at both the school and adult service levels.

As noted by Migliore et. al., 2008, some of the concerns about safety and consistency in work schedules are among the top tier of concerns for families. In certain families where both parents are working, in single-parent families, or in those settings where the individual with intellectual and developmental disabilities is residing in a community residence, there are concerns about working second shifts, part time employment and job transition that can cause providers and family members to discourage employment. Parental concerns about harassment, bullying and risks to independent travel can all raise concerns and apprehensions on the part of families. Another major concern is the loss of friends and the apprehension about meeting new people and making new friends for persons with disabilities when entering work.

Some of the more systemic concerns include work skills and the perception that the tasks will be too difficult. Often when there is a problem with the skills and tasks required this is reflective of an inadequate job match, not a problem created by the employer. When job accommodations and job modifications are made, seldom is the level of work skills an issue in the work setting. There may be occasions when job tasks will change or new technology or procedures are introduced, and as a result, there will be some need for training and retraining. In many instances, however, this can be accomplished through company resources, and in others, with the assistance of an employment training specialist.

A common concern involves the lack of adequate transportation for persons with intellectual and developmental disabilities to get to employment. A number of studies have considered this barrier and conclude that, while this is a real issue for some, it is not a primary concern for many (West, Revell & Wehman, 1998). Often the issue of transportation is the identification of local resources, either public or private that can assist. In some instances the issue of transportation may restrict some job areas. However, this appears to be less of a challenge for those in urban and suburban areas.

The support provided by vocational rehabilitation and disability service agencies has often been inadequate. The services provided by these agencies often reflect both a lack of flexibility in providing necessary supports as well as limitations in the skill level of the personnel who are to provide supports. There have been a number of studies identifying the level of expertise of staff in the employment support areas (Inge, Wehman, Revell, Erickson, Butterworth & Gilmore, 2009). As was noted earlier, many people with intellectual disabilities do not spend a great deal of time in the job development process and many staff feel uncomfortable in being the sole source of support for the consumer in a work setting. This issue is tied more to the lack of skill training expertise on the part of the staff as opposed to availability of staff supports.

The fear of loss of benefits has been often raised by staff, families and consumers. While there are a number of work incentives that are available (Plans for Achieving Self Sufficiency [PASS], Impairment Related Work Expenses [IRWE], 1619(a) and 1619(b)) not all of these apply to all SSA beneficiaries. The inconsistency in SSDI and SSI benefits and incentives has long served to make the decision to consider employment complex for many. About 70% of persons with long-term psychiatric disability in the United States are dependent upon Social Security, Medicaid and Medicare programs for financial and medical support (Gao et. Al., 2010). Between 1984 and 2001, people with psychiatric disability are the single largest group and for the longest period of time receiving financial support from SSA.

In addition to the cash and health care benefits, concerns about loss of housing, food stamps and other benefits must be dealt with. The attempt to utilize benefits counselors has begun to address some of these concerns but there remains a great deal of misunderstanding of the availability of benefits and the impact that earnings will have on individual benefits.

3. What do the data show about the desire of persons with intellectual disabilities to work?

In responding to this question there are some interesting challenges that emerge. For many persons with disabilities, applying for Social Security benefits has taken them through a process of attesting to their incapacity to engage in employment. When examining if some would be interested in working, one could look at the return-to-work data of SSA showing that less than one half of one percent of beneficiaries return to work. The stakes for returning to work for some beneficiaries, especially those on SSDI, can be high. This return-to-work data, however, does not reflect people's actual desire to work.

When we look at the data about perceptions of employment among youth with disabilities and people in sheltered employment settings, where the expectation of the individual with a disability is quite clear, it is apparent that there exists a considerable interest in employment by persons with disabilities and a strong expectation among youth that employment is an option in the future.

The low labor force participation rates for persons with significant disabilities is complicated by a related low level of expectation on the part of many regarding the potential for such individuals to be in the labor market. This reduced expectation is expressed despite the fact that in the National Longitudinal Transition Study (NLTS) fully 86% of those students with disabilities expressed an anticipation that they would work after graduation. Additionally, in a study completed by Migliore et. al (2008) 63% of those individuals who were in a sheltered setting expressed an interest in working outside of the workshop. Conversely, when the staff in the adult provider system are asked their expectations about the need for sheltered settings nearly 90% felt that there was a need to retain such settings for persons with disabilities (Inge et. al., 2009). Seven out of ten persons with mental illness noted that given the opportunity they would prefer employment.

Over several years the Harris Poll has conducted surveys of persons with disabilities including information on employment status. While the definition of disability in these polls is considerably wider than the ones used by the Institute for Community Inclusion the findings that they report on employment do shed some light on the employment rates and the interest in employment as expressed by persons in their sample. In their most recent survey (NOD, 2011) of those reporting not working 14% indicated that they were seeking employment, a similar number (14%) indicated that they were not seeking employment, others reported that they were retired (14%), 7% reported being a stay at home spouse or partner and 29% reported something else (http://www.2010disabilitysurveys.org/pdfs/surveyresults.pdf).

The evolution of the self advocacy movement has again shown that persons with disabilities do not want to live in poverty, work in segregated settings or be told what they have to do. Many in the self advocacy movement seek to be involved and have adopted the mantra 'noting about us without us'. This coming November the second combined national meeting of the Alliance for Full Participation (AFP) will be held in Washington DC. This second national convention will have as its focus employment and the goal of doubling the labor force participation rate for persons with disabilities by 2015. There are clear messages coming from the self advocates and students with disabilities that employment and getting out of poverty are a goal for them.

4. What should or could employers be doing to promote employment of people with intellectual disabilities?

Engaging employers in both the training and hiring processes can be an effective way of addressing both the employer's future workforce needs as well as to access the natural environment of the typical workplace for training. Employers can serve as a training resource offering internship and apprenticeship options for persons with disabilities. Utilizing the natural setting of the workplace as a training environment can create a very strong training experience for persons with disabilities. Employers in many industries have used the natural setting as a training environment through apprentice and internship opportunities for persons without disabilities. Similar strategies can be used to train persons with disabilities in natural work settings.

Technology can and should play an increasing role in facilitating a stronger match between a job and an individual with a disability. Labor market information (LMI) is playing a more central role in job development and applicant and employer matching. The traditional approaches of job development, identification of labor market needs and linking clients to a potential job has been highly labor intensive and not reflective of the way employers seek employees. The use of a real-time demand data system will create immediate matches of the knowledge, skills and abilities (KSA) of the job applicant to the KSAs as presented in the job postings. The capacity to identify all job openings in a designated area (local, sub-state, state, regional or national) on a daily basis will assure that there is an immediate knowledge of industry demands. The ability to sort experiences, interests and preferences of the clients served and the matching of those to the needs on the demand side has not been done to date. The development of the strategies as well as the implementation guidelines, policies and practices can be done on a national level and will facilitate adoption at local, state and national levels and thereby streamline the job development process for providers and persons with disabilities.

As has been demonstrated through the President's Executive Order calling for the Federal Government to be a model employer through the hiring of 100,000 persons with disabilities, a similar emphasis on the hiring of persons with disabilities could be called for through the federal government contacting process. In this instance the government can set either an expectation that the recipients of federal contracts have an affirmative action plan and do hire persons with disabilities or have a clear preference in the hiring and do hire workers with disabilities. This model could be similar to the executive order issued by the President this past year for the federal government.

With more and more of the workflow able to be completed in remote locations, there is an opportunity for employers to be able to development strategies to ship electronically work to persons with disabilities in their homes or in small businesses that employ persons with and without disabilities. Innovative on-line companies are now considering how to move work to the individual as opposed to the individual to the work. While the nature of the work may require additional expertise, having another employment option or pathway to employment that utilizes the internet may be a way of responding to some of the transportation barriers and also address some of the outflow of work to other countries.

Conclusions and Future Considerations

It is apparent that persons with intellectual disabilities as well as those with mental illness have not been considered part of the workforce to date. The labor force participation rate for persons with disabilities has and continues to be considerably less than that for persons without disabilities. The reasons for these low rates are complex and reflect issues that include personal and family concerns, systemic barriers, perceptions about the capacity for such persons to work and the concerns about the economy in general. The above testimony attempted to address some of those issues and also to link these concerns to the evolving demographics of the work force in the coming years.

There is a need to better integrate services across the school and adult service systems, and to recognize that real work experiences and structured community experiences (including national service and postsecondary educational options) all contribute to the development of those soft skills so critical to the success of a person with a disabilities (and for that fact all persons) in the workplace. More creative access to technology that supports, individually and systemically, job identification and job matching, increased skills among those responsible for the provision of employment and training services and the recognition that expectations and the presumption about the employability of all is central to turning around a system that has shown little progress in supporting persons with disabilities in getting into employment and out of poverty.

It is not just the public side that needs to be engaged in the efforts of increasing work force participation rates for persons with disabilities but the private sector as well. The looming workforce shortage in the coming years is a clear sign that our workforce cannot continue to ignore this heretofore untapped labor supply. Additionally, there is a clear need to expand our perception of the role of industry as not just the end consumer of the employment and training process (the hiring source) but an active player as a training resource, source of priority identification in needed labor talent and the development of effective partnerships that assure that the efforts of the public side do lead to solutions of labor shortages in the private side. We must consider innovation in job identification, flexibility in job supports for those new to the employer as well as those remaining with the employer but needing accommodations and development of options for job advancement (in both earnings and benefits) for the employee having a disability. For many persons with intellectual and developmental disabilities as well as those with significant mental illness, the job placement process is the beginning and not the end of the process in assuring that success and advancement will be a reality for the employee with a significant disability in the coming years.

I would like to acknowledge the support of Dr. John Butterworth, Dr. Alberto Migliore and Frank Smith, all of the Institute for Community Inclusion, for their assistance in the preparation of this testimony.

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