Employment, People with Disabilities and the Most Integrated Setting Law

What do institutional bias, learned helplessness and disability have in common? Overwhelmingly high unemployment rates among people with disabilities!

If you have a disability and are receiving services funded by the New York State Education Department Office of Special Education (NYSED-OSE), Office of Mental Retardation and Developmental Disabilities (OMRDD), or the Office of Mental Health (OMH) it is unlikely that you are on a path leading to competitive employment. In fact, according to published statistics most people participating in state funded day habilitation, sheltered work, continuing day treatment, clinical and other similar programs will never have the opportunity to engage in mainstream work activities. Current data from the Office of Mental Health, for example, indicates that over 85% of individuals presently being served are unemployed, with the expectation that most will remain jobless for the balance of their adult lives.

The problem stems from the fact that our service system was originally designed to warehouse people with disabilities in institutions without any expectation that they would ever recover or participate in community life. Despite a dramatic shift away from this approach in recent years, many local-level provider agencies continue to embody an “institutional bias” that assumes the necessity for maintaining a culture of segregated, perpetual services. The fact is that most individuals remain in the service system indefinitely whether they need to or not, as disabilities are seen as permanent conditions requiring ongoing treatment the course of which is best determined by the provider and not the person being served. As a result many people are led to forego the notion of overcoming disability, pursuing self-defined goals and obtaining competitive employment, and are encouraged instead to adopt a perennial service recipient lifestyle involving participation in dead-end programs that reinforce feelings of incompetence, helplessness and dependency.

Similarly, students with disabilities in State Education Department funded special education programs are often presumed incapable of sustaining competitive employment and as a result, are denied the chance to participate in work learning experiences during their adolescent years. In contrast, most non-disabled youngsters have many opportunities to learn about working-for-pay, and to cultivate work readiness and job seeking skills as well. The end result is that students with disabilities, unlike their non-disabled counterparts often make the transition from school to adult life having little or no exposure to the kind of learning that quite literally provides the foundation for personal and economic self-sufficiency.

The Most Integrated Setting legislation passed in 2002 is intended to address the institutional biases that prevent people from living (and working) in least restrictive settings, and by doing so liberate people with disabilities from the web of prejudicial services that hold them captive and prevent them from pursuing their goals and dreams. Ultimately the success of the Most Integrated Setting law is dependent upon the effectiveness of the Most Integrated Setting Coordinating Council (MISCC). The MISCC subcommittees have recently made their recommendations to the larger Council and the MISSC Annual Report is available.

Regarding recommendations made by the MISCC Subcommittee on Employment:

Employment -- the lack of positive employment outcomes is clearly acknowledged by the MISCC, however, the solutions presented do not address the causative factors. Strategies like marketing and messaging have been tried for decades yet despite the continued efforts of countless traditional vocational rehabilitation service providers nationwide, have met with little success. This is largely because issues related to bias in systems, vested interests, benefit disincentives, low expectations, and other major employment barriers are only gratuitously addressed. The sad truth is that, for those who do access the employment support network, the outcomes are generally poor. “Quick fix,” entry-level jobs with little promise of either benefits or advancement is often regarded as acceptable, permanent outcomes and the revolving door into and out of system dependency continues to spin without restraint. An additional irony is that most organizations that provide placement services have a poor record of hiring people with disabilities making it just that much more difficult to inspire others to do so. Sheltered vs. Supported Employment – A recent study in Research & Practice for Persons with Severe Disabilities compares the cost-effectiveness of sheltered and supported employment. Unlike other studies, this one analyzed to total costs over time. This is important because supported employment typically involves higher upfront costs (during the career planning and job development phases), that rapidly decrease as natural support replaces formal intervention.

Title 55 B and 55 C Programs – another recommendation by the MISSC is to increase the number of 55 B and C slots, which is commendable. However, there are currently many vacancies in the existing programs and it will also be important to implement mechanisms for ensuring that these positions are filled through an active recruitment, placement and training process.

Not for profit disability service agencies -- It is difficult for disability service organizations to sell the concept of hiring people with disabilities in the private sector, when in fact they themselves don’t do this. Not for profit, disability service organizations receiving state funding should be mandated to recruit, hire, place and train qualified persons with disabilities in their own agencies. Legislation should be created that would require all such organizations to fill a minimum of 10% of their positions at all levels with qualified individuals with disabilities.

In order to realize the principle that all people can work, substantial changes must be made to funding mechanisms that currently do not afford people opportunities to participate in competitive employment and provide reimbursement incentives to keep people in non- competitive environments. The system is lacking in objective third party brokers and decision making is controlled by providers with agendas that may be incompatible with the solutions being sought.

Unfortunately, this report does not adequately speak to the need for comprehensive, integrated (appropriately financed) employment services in the State, including agencies and resources that are not disability specific, e.g. Workforce Investment. Through the creation of a well-coordinated, multi-tiered employment system, there would be significantly increased opportunities for quality improvement, streamlining, training, evaluation, funding requests, and seamless service delivery. Territorial issues have long prevented a unified approach from being implemented. And, without centralized mandates, local efforts are doomed to repeat history, and chances of moving the system to an “everyone can work” vision will never happen.

The themes of system integration, third party “honest brokers” and alignment with non-disability systems should be further explored. Historically, single “point of entry” structures have been used to safeguard provider interests by ensuring an “equitable distribution” of referrals. Although some consideration may have been given to matching individuals with services, the process of filing and back-filling vacancies is largely detached from person-centered planning. What we need is to adopt a fresh perspective based upon a more enlightened understanding of what people with disabilities really need and what they are capable of accomplishing. Needed is an entirely fresh review of the system in terms of what the far reaching goals are, as opposed to how to make an existing system better talk to itself.

It is also strongly recommended that as our system evolves we hold ourselves accountable and continuously measure the effectiveness of our actions. This would include collecting baseline data on: current employment participation rates, funding, placements, poverty rates, median household income, school dropout rates, length of stay in programs, etc. for the purpose of establishing a “dashboard” for assessing tangible progress and identifying areas requiring continuing attention.

These are just a few observations and recommendations for moving employment for people with disabilities in the right direction. The jury is still out as to whether or not the MISCC’s actions will be bold enough to break institutional biases and begin to reverse the learned helplessness that continues to plague millions of people with disabilities in New York State.

December, 2008