In many states, policy is changing in an effort to improve life options for individuals with intellectual/developmental disabilities (I/DD). Indeed, the new policy raises new questions and issues:
- How will the positive and negative effects of policy change be measured in regards to the impact it has on the lives of those with I/DD?
- When should policy override an individual with I/DD’s right to choose an employment or housing setting for his or herself?
- Does policy change unintentionally create barriers to the development of employment or housing opportunities for those with I/DD?
A new study by George Washington University provides insight into these questions and may help change the course of state policies across the country.
5 million US citizens have intellectual/developmental disabilities and require a range of support services in order for them to remain active contributors to society. These individuals tend to be reliable, hardworking, and dedicated employees who are proud of their jobs and want to give back to their community. There are two predominant employment models that are currently being targeted in changing policy:
- Competitive, Integrated Employment: An individual with I/DD has a paid job coach or support staff to help him/her accomplish responsibilities in a workplace where those without disabilities are primarily employed. They are paid at least minimum wage by their employer and public funds pay for their necessary support staff. Typical jobs for individuals with I/DD in retail stores include bagging groceries, stocking shelves, janitorial tasks, hanging clothes, etc.
- Facility-based Employment or Sheltered Workshops: Settings where employees are primarily individuals with I/DD and the support service agency owns and/or manages the business. Jobs usually consist of assembly, stuffing mass mailing envelopes, preparing information packets for corporate offices, etc. They are paid based on their production, thus typically sub-minimum wage.
In addition to and because of the lack of options, local organizations and families have been developing more employment choices such as mobile work crews, social enterprises created around an individual’s interest, Community Supported Agriculture (CSA), supporting an entrepreneur with I/DD, etc. These emerging solutions ensure a wide array of employment choices, which is the key to finding a good fit for each individual. Paradoxically, policy changes may limit employment options in the future.
Just a few decades ago, society viewed individuals with I/DD as burdens, unable to learn, and certainly as non-contributing citizens. Employment was not an option, and individuals were often forcefully segregated with no control over their lives. Through advocacy efforts, important legislation was passed to protect individuals with disabilities from discrimination; however, the community culture is still catching up. Although society and community supports have progressed quite a bit, there is much room for improvement.
In 2006, Maine decided that it needed to improve employment opportunities for its citizens with I/DD. After a year of research, Maine Public Law Chapter 101 “Resolve, To Create Improved Employment Opportunities for People with Disabilities” became law in January 2008. This change eliminated the option of receiving public supports in a sheltered workshop or facility-based employment setting.
The CHIMES Foundation, a large support service provider whose motto is Empowering People, Enriching Lives, led George Washington University to research what happened to those who were once employed at a sheltered workshop after this legislation was passed. The study titled “Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine” reveals:
- Maine citizens with I/DD currently work an average of 12 hours per week, the lowest average in the country. (p. 4)
- There was a 5.4% decrease in the employment rate for individuals with I/DD once sheltered workshops were phased out. (p. 7)
- The rate of employees in integrated, competitive employment settings also declined. (p. 12)
- Staffing ratios are limited to an average of 1:3 when ratios up to 1:1 had been permitted prior to the implementation of Public Law Chapter 101. Thus, individuals who have higher support needs cannot access employment opportunities. (p.18)
- Of individuals who were part of the study and previously employed at a facility-based setting before 2007, over 57% were either laid off, unemployed, or only had a volunteer position by 2014. (p. 25)
- Those who are working earn less per week because of the reduction in the number of hours worked. (p. 26)
- If one loses his/her job, he or she must be re-assessed by Vocational Rehabilitation before he or she can find another job. Providers report assessment can take longer than a year and clients have lost job opportunities in the interim. (p. 29)
Not only did individuals with I/DD lose employment setting options, but they also lost providers who offered employment services:
Some of the providers participating in this study are no longer offering employment services. Those interviewed cited barriers that interfered with their ability to provide employment services, including the prohibition on colocation of community supports and employment services and increased provider costs for providing employment supports. (p. 2)
Maine’s goal of improving work opportunities for those with I/DD through the phasing out of facility-based options has yet to be realized. The unintended consequences of eliminating facility-based employment opportunities are important to examine as all states are in a transition period and must change policy to meet new federal waiver criteria. Moreover, the study offers lessons learned for other states trying to increase competitive, integrated work opportunities for those with I/DD.
Read the full study here.
Maine’s case study is an important example of the need to assess if changes in policy have produced the intended outcome. Unfortunately, the study did not report an increase or decrease in the quality of life of those individuals who lost their jobs and how they are now spending their time. Given the scarce public funding available to meet such a growing demand, policy must be both developed and evaluated through research that focuses on the participant’s quality of life.
In April 2014, as the National Coordinator of the Coalition for Community Choice, I attended a meeting of the Interagency Autism Coordinating Committee (IACC). Inasmuch as less than 2% of research funding for autism goes towards evaluating supports of adults on the spectrum, I suggested areas of research that would directly impact adults on the autism spectrum as well as influence policy decisions. The following questions apply to those on the autism spectrum and to the broader population of individuals with I/DD:
- How does setting design, program structure, and/or sensory-friendly environments influence quality of life?
- Are these unique supports protected in policy?
- How can technology and/or natural supports be used more effectively?
- Those who have the most challenges are often the first to be denied opportunities.
- What are better employment supports for elopement, self-injurious behavior, and medical fragility or for those who become so frustrated that their only way to communicate is through physical behaviors?
- What trainings, assessments, and retention strategies are most effective for direct support staffing?
- What specific elements or barriers cause feelings of loneliness, under-appreciation, or isolation?
- What are the greatest impacts on the quality of life of individuals in different employment settings? Presence of peers? Consistency of job coach? Income level? Feeling valued?
- The support options in every state must be quantitatively and qualitatively assessed:
- How do states plan to meet the demand?
- What are the specific barriers to employment choices?
- Who is being left out or falling through the cracks?
- Are state officials meeting the needs and preferences of their constituents?
The interests, support needs, and employment goals of those with I/DD are diverse. States should not over-rely on just one model of employment as policy should be flexible enough to encourage more diversity in emerging models of employment. Policy should not eliminate opportunities for those with I/DD but, instead, encourage diverse opportunities to meet individual employment objectives.
Maine’s aspirational goal “To Create Improved Employment Opportunities for People with Disabilities” is commendable. However, this attempt to improve employment outcomes by eliminating employment choices is not truly a person-centered method, especially if the crux of employment success is based on physical settings and whether an individual finds competitive, integrated employment. Above all, meeting employment goals set by individuals with I/DD and improving their quality of life should be the marker of success.
Additionally, defining specific parameters for “competitive, integrated settings” may eliminate workspaces of the future. For example, Star Ford is an autistic entrepreneur and founder of Ocate Cliffs, an eco-retreat center that aims to be staffed largely by autistics. In a recent interview, Star discusses the need for an “autistic workspace.”
Any minority group can benefit from a safe space, which is a place controlled by that group. When you go there as a member of a minority, you might feel relieved, welcomed, or empowered by letting go of that constant stress of being the ‘other’ in the wider world. With autism, it is no different. A low-stress cognitively-accessible safe space for us that’s conducive to personal and career growth is what I call an “autistic workspace.”
Under Maine’s new policy, it is unclear if an “autistic workspace” like Ocate Cliffs would be considered integrated enough. This is why the intent of the new federal regulations regarding the funding for supports through Home and Community Based Service (HCBS) waivers is so important to preserve:
In this Final Rule, CMS is moving away from defining home and community settings by “what they are not” and toward defining them by the nature and quality of individuals’ experiences. The home and community-based setting provisions in this final rule establish a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics. (CMS Factsheet)
Federal policymakers focused the new HCBS regulations on the quality of life of individuals and emphasized the importance of a person-centered plan and annual review of that plan in order to make sure their support needs and life goals are being met.
Policy alone will not improve employment outcomes for those with I/DD, and in the case of Maine, it can actually decrease employment rates. Across the country, local communities are trying to create employment opportunities that are created around the interests and abilities of those who have not found meaningful work. These efforts to increase the variety of employment options should not be thwarted by well-intentioned, yet inflexible, policy. One’s choice of where and with whom he/she would like to work should be guided by the goals, interests, and support needs of every unique individual with I/DD as outlined in a person-centered planning process.
CALL TO ACTION: If you believe that policy should increase options and decrease barriers to quality employment choices, consider joining the Coalition for Community Choice: A new alliance of organizations, businesses, and housing professionals that strive to meet the housing and employment demand for an array of life options for those with intellectual/developmental disabilities (I/DD).
ABOUT the AUTHOR
Desiree Kameka, Director of Community Education & Advocacy at Madison House Autism FoundationDesiree’s work focuses on researching housing issues, advocating for autistic adults and their issues, and presenting her work at local and national gatherings. She visits many residential communities and social enterprises across the USA and highlights their unique victories and learning curves while sharing stories of residents with autism and other developmental disabilities. Desiree is also the project lead for Madison House’s interactive Autism Housing Network, which is currently in BETA testing. Her passion is empowering autistic adults and parents to create a future that is exciting and life-affirming by offering small group consultations for forming projects.