PCPID Quarterly Meeting: September 26–27, 2011

Employment Issues that Impact People with Intellectual Disabilities

David Mank, Ph.D., Director, Indiana Institute on Disability and Community

David Mank began his presentation by acknowledging that the unprecedented political and economic climate presents a good opportunity to discuss employment for people with ID, investment and change and produce a positive outcome. He highlighted the 2009 PCPID report to the President, “Dignity Through Employment,” because unemployment has not improved significantly in the last few years and the goals of the report are still relevant. Dr. Mank read a portion that illustrates the impact of personal stories, but also emphasized the importance of drawing attention to the hundreds of thousands of people who are not working in the community and are able to do so. The employment situation for people with ID has remained roughly the same for thirty years, although several states are doing better than others. There is solid research about the ability of individuals with ID to work and clear intent in the last three decades of state and federal policy to provide them with opportunities.

Dr. Mank went on to discuss the 13 recommendations from the 2009 PCPID report:

1. Issue a Presidential call to double the number of people with ID working in integrated jobs by 2014.
2. Create a national public awareness campaign to build a new wave of employment expectations.
3. Expand implementation of existing legislation and federal policy with a specific focus on employment outcomes.
4. (No longer relevant) Continue to invest in the New Freedom Initiative
5. Create employer incentives and demonstrations.
6. Promote employment of people with ID in the public sector workforce.
7. Promote large-scale demonstration projects based on innovations of the last ten years.
8. Endorse and expand state Employment First agendas.
9. Promote national and community service for young people, fully integrating young adults with ID in the effort, as a means for transition to adult life.
10. Expand investment in the Individuals with Disabilities Education Improvement Act of 2004 and the Rehabilitation Act’s focus on transition plans for all youth with ID, including full federal funding of the Act.
11. Expand investment in the Rehabilitation Services Administration related to funding supports for transition from school to adult life.
12. Increase incentives to work and remove income limits governing benefit programs for people with ID, and promote these incentives.
13. Refocus existing resources to promote integrated employment.

In Dr. Mank’s opinion, reinvestment of existing resources towards employment and the involvement of self-advocates are two potential “game changer” on this issue.

(Presenter-Committee Dialogue)

Jim Brett asked which foundational values PCPID should consider with regards to the importance of this priority issue for people with ID. Dr. Mank answered that the value base of PCPID is just fine, it but may wish to work on redefining words like “productivity” (how fast a person can work) in favor of “contribution” (indicates a valued role and full participation).

Jim Brett asked what the risks are in the current economic and political environment, related to programs, services, and policies supporting people with ID in employment. The biggest risk is complacency because of the current economic environment, in which the general unemployment rate is high. Carol Wheeler requested the unemployment rate for people with ID, in order to spread awareness by using a concrete figure to draw outrage. Dr. Mank was uncertain, but estimated 22 to 25 percent. Sharon Lewis thought the unemployment rate was slightly lower. However, that rate excludes the underemployed and individuals who are not actively seeking employment. The participation rate of 76 to 78 percent might be a better indicator because it is extremely low for people with disabilities, relative to the general population. For each person with intellectual or developmental disabilities (IDD) who is working, there are at least five to seven others that do not have the opportunity for a job. A survey from the ARC of the United States found that 85 percent of individuals with ID were not working. Clay Boatright suggested focusing on the fact that employment for individuals with the capability to work can free up services for others who are not capable of working. David Mank pointed out that, while government money is saved when individuals go to work, the parts of government that pay for employment supports are not the parts that benefit financially from employment outcomes.

Liz Weintraub asked whether the 22 percent includes those working in sheltered workshops and segregated day services. That figure only includes integrated community employment.

Liz also asked how to handle situations in which individuals with ID want careers rather than jobs without advancement. Dr. Mank acknowledged that the problem has not really been addressed and suggested that PCPID might be in a good position to address the issue.

Mark Gross pointed out that, while government can be influenced by policy to hire more individuals with ID, the private sector will not necessarily follow suit unless doing so is at least cost neutral. Dr. Mank responded that, if individuals are well matched to a job, the data indicates no increased costs or insurance rates. The circulation of stories and videos of individuals with ID working in various fields has helped to open up opportunities in new industries.

Jim Brett asked what the opportunities are in this economic and political environment, related to programs, services, and policies supporting people with ID in employment. Dr. Mank said that most employees, with or without ID, start at the entry level. Despite the current economy, entry- level positions are still available, so there is still opportunity for employment.

Jim Brett posed the following question: what is the potential economic impact of changes in policy and funding in employment? As Clay Boatright commented earlier, employment can allow for reduced supports over time and can allow improvement in general health.

Jim Brett inquired which states were doing betting in hiring people with disabilities and what those states have done differently. Vermont, Oklahoma, and Washington have higher employment rates for diverse reasons. Vermont made a policy decision that people with IDD belong in the community and eliminated their segregated day settings. The state of Washington made employment a priority for the state IDD agency in the 1970s, so they have had decades to invest in innovation and build the structure for training and technical assistance. Oklahoma, has a Medicaid waiver that pays the providers of services for the number of hours that people with IDD work beyond the number of hours it takes the provider to support them. In addition, the waiver says that group placements are equivalent to individual placements, causing an over- reliance on group placement such as crews or enclaves.

Gary Blumenthal asked Dr. Mank if he knew of any data examining the impact of employment on the economic stability of families of individuals with ID. Since many people with ID live with family, the burden of support often falls on the family if an individual is unemployed during the day. Deborah Spitalnik noted that the Family Support Coalition of New Jersey collected family to-do lists, which demonstrate the kinds of accommodations that families have made. She offered to provide the reference. Peter Berns mentioned the ARC survey results that indicated one out of five families had a family member leave work to stay home with an adult child with disabilities. One of the employment areas that has grown for people with disabilities is preferred-source contracting: AbilityOne on the federal level and state preferred-source contracting.

Gary Blumenthal asked Dr. Mank to comment on the shift away from center-based work, towards service types of employment. Dr. Mank responded that he knew the numbers of opportunities were in the twenty-thousands. There has been a shift from the center-based contracting to more of the service-based contracting at Air Force bases. He acknowledged the importance of asking how those particular programs can move toward an integrated community job arrangement, as opposed to group approaches. He recommended focusing on moving programs towards jobs of choice, the direction suggested by the self-advocates. The AbilityOne program tends to pay very well, but could be improved by moving toward a more integrated employment focus.

Carol Quirk pointed out that the response to Mr. Bern’s question spoke to the 13th recommendation in the 2009 Report to the President, about refocusing existing resources. She asked what the biggest barrier was for service providers switching over to community-integrated employment models. David Mank identified two barriers. The first barrier is the impact of Medicaid and Medicaid waivers, which determine supports for people with ID (underscoring the importance of September 16th CMS memo, stating a preferred outcome). Second, as long as the economic realities favors non-integration, it will continue to be difficult. Dr. Mank noted that, additionally, some economic disincentives keep prevent integrated programs and this needs to be addressed. The economic opportunity should be on the community employment side. It needs to work from a business standpoint, which is not currently the case.

Mark Gross asked for Dr. Mank’s opinion on why these issues had gone for thirty years without many successes or changes. Dr. Mank named three possibilities: 1) continuance of an existing structure that does not promote employment of people with ID as the first outcome; 2) when people did work, they were often encouraged to maximize their benefits and only work a little bit, as opposed to working enough to earn a higher income, reduce their benefits, and be better off over time; and 3) economic disincentive have prevented providers from moving in the direction of integrated employment. Changing incentives is the one thing that has not been done for the last 20 years. When the financial incentives remain unchanged, the problem should not be expected to change. He reiterated the significance of the CMS memo, calling it the beginning of an incentive that moves in the direction of the value statements of every piece of legislation about disability over the past thirty years. The vast majority of state and federal money supports non-integrated employment. As long as that is the case, there will be non-integrated employment.  Carol Wheeler asked for the CMS memo to be circulated. Sharon Lewis agreed to resend the memo, if people did not receive it.

David Mank noted that, six months ago, in order to encourage states to move towards integrated employment, the Administration on Development Disabilities (ADD) issued an RFP urging state-level projects, systems-change efforts that emphasize integrated employment. That is the kind of effort that helps create the incentives discussed. Dr. Mank thanked Commissioner Sharon Lewis. Ms. Lewis reported that ADD will be able announce those states later in the week. The Commissioner related the hard work of CMS to get the letter out and its positive reception from the community. The core service definitions will begin to capture some of the data that will help make those distinctions. Ms. Lewis acknowledged that many self-advocates were concerned that CMS clearly stated that pre-vocational services should be time limited. She argued that people should not be entering sheltered workshops and be in pre-vocational services long-term, as is often the case. If the program is pre-vocational, it should be preparing individuals towards something that is vocational. Many were very happy to see CMS making that distinction. However, CMS regulations continue to support minimum wage as a component of these supported employment services.

Deborah Spitalnik asked Dr. Mank whether there was legislation, TEAM or TRAIN, about the Developmental Disability system and the Vocational Rehabilitative system being more involved in transition, so that individuals move directly from school to employment. She stated that she believes this was pending and not a current legislation.

Dr. Mank responded that the legislation helps; the incentives matter hugely. He reemphasized getting the business side of this right. He concluded with a quote, by Dan Thompson, a self-advocate, and his mother, Margaret Lee. She says, “whatever the problem is, a job is a big part of the answer. You want more friends? Get a job. You want to go on vacation? Get a job. You want to get better healthcare, either buy it or get it from your employer? Get a job. You want to feel like you contribute to society. Get a job.”