October 16, 2015

Changing the Conversation – Again

I was pleased to learn recently that MARO’s participation in the statewide Technical Assistance Grant, funded by the US Dept. of Labor’s Office of Disability Employment Policy (ODEP), will continue in FY16. The focus of our efforts as an association has been placed on the Provider Transformation component of this project, with access to subject matter expertise on improving outcomes in competitive integrated employment for individuals with disabilities being served. A Capacity Building initiative was also included, providing training for job development staff on Customized Employment.

Stakeholders in this project include the Development Disabilities Council, Behavioral Health and Developmental Disabilities Administration, Michigan Rehabilitation Services, the Department of Education, and MI Protection and Advocacy Service. MARO is one of only two state associations participating in this grant nationwide, and has been lauded by ODEP for the commitment demonstrated to operationalizing the objectives of the grant – improving outcomes in competitive integrated employment for individuals with disabilities. Stakeholders don’t always agree on the particulars regarding implementation, policy details, or the pace of change – yet a band of unlikely allies has agreed to NOT place our focus on the areas of difference, but instead on a set of shared values with which we can all agree. By sticking to this agenda – optimizing independence, enhancing quality of life, and promoting community inclusion – we are working together effectively, and in a new spirit of collaboration. This is the future direction of this association, with full support from our Board of Directors.

And yet everywhere we turn, a more negative outlook persists – from the voices of some advocacy groups, community rehabilitation organizations (CROs) have come to represent a culture that is restrictive of opportunity, rather than promoters of independence and self-sufficiency. In response, men and women who have dedicated their entire working lives in service, supporting individuals with disabilities in pursuit of employment and community access in Michigan are scratching their heads, wondering: “When did we become the bad guys?” After a generation of acknowledgement for promoting positive change in acceptance and inclusion for individuals with disabilities, the conversation has changed. Many point to the progressive path MARO member organizations have navigated for years, offering supported employment in a community based setting as a part of a full array of service options. But when that menu of options includes facility-based employment, CROs are often inaccurately and unjustly cast as defenders of a business model that simply funds high salaries and exploits workers with disabilities.

There is an enormous disconnect here. MARO member organizations are mission-driven, entrepreneurially oriented businesses that remove barriers to community access – creating opportunities for individuals with disabilities and other barriers that would not otherwise exist. Of course it’s clear that the current trend in public policy emphasizes competitive integrated employment – jobs in the community, at or above minimum wage, and interacting with others without disabilities – as the priority outcome for all job seekers. MARO supports this optimal goal. And yet within the disability employment community there is an incredible amount of energy devoted to disagreement regarding what constitutes an integrated setting, the definition of competitive employment – even the significance of who signs a worker’s paycheck. Outside this sub-culture of policy-driven discord, only 56% of Americans personally know someone with an intellectual disability (ID). 42% of Americans have had no personal contact with someone with an intellectual disability. Only 13% of Americans say they have a friend with an intellectual disability and only 5% know what it is like to work with someone with ID. The vast majority of Americans believe that people with intellectual disabilities should be employed, but one in five say they would not be comfortable hiring someone with ID, and nearly the same number feel the same way about working alongside them as a co-worker. (Source: Shriver Report Snapshot, July 2015 – http://mariashriver.com/blog/2015/07/press-release-shriver-report-snapshot-insight-intellectual-disabilities-21st-century)

This study further revealed that the key to promoting a more inclusive culture is through this connectivity: those who personally know someone with an ID are significantly more likely than those who do not know anyone with an ID to feel at least somewhat comfortable employing (84%) or working with someone with an intellectual disability (87%), having their child in the same class as a child with intellectual disabilities (92%). The Shriver Report Snapshot exposes that the opportunity to meet, befriend, play, or work with someone with an intellectual disability is exceptionally rare. This isolation perpetuates fear and misunderstanding.

It would seem that the most effective way to move toward a more inclusive and accepting society is to change the conversation again – elevate beyond the divergence over details, and find common ground to push for opportunities that move in this direction, that lead to the personal connection that promotes raised expectations, greater understanding of, and opportunities for, individuals with disabilities. So when the argument turns to eliminating employment options – intermediate steps and services that may be needed to assist people along their path to the desired outcome of competitive integrated employment – unless alternatives are simultaneously developed that promote greater inclusion, this seems a step backward. To pursue the most integrated service setting appropriate to the needs of the individual, and to make this process sustainable, we need cooperation between state Vocational Rehabilitation agencies and the mental health services system, higher reimbursement rates for the providers that serve individuals in a community based setting, and greater access to expert benefits coordination and planning. These are all initiatives in which MARO is involved as a provider association – and until they are in place, removing the choice of a facility-based environment will leave too many individuals underserved – or worse yet, not served at all. Elimination of options may result in unintended consequences of further isolation if not done with a properly vetted and tested safety net in place. Instead, let’s focus on a full spectrum of service options, including both facility-based and community-based employment – maintained within a person-centered, self-determined service delivery system. And move the needle toward more competitive integrated employment outcomes, while honoring and respecting each individual’s choice.