Benefit Planning, Work Incentive Counseling

During the course of the Committee’s site visits, the Committee heard from workers, families, and providers alike about how important benefit/work incentive counseling is to a successful transition to into integrated competitive employment situation. This counseling allows the person with a disability to make decisions which assure that their critical needs are supported. The Committee learned during some meetings that the transition was much more successful when the individual had this counseling support, but for some they were not aware of this valuable service.

The U.S. Social Security Administration (SSA) has important, long-established work incentives that allow Supplemental Security Income (SSI) beneficiaries to accumulate income and/or resources without risking loss of benefits while working toward a future occupational goal or maintaining self-employment and small business ownership. However, the Plans for Achieving Self-Support (PASS) program, and the

Benefits Planning, Assistance, and Outreach Program (BPAO) program, among others, are still relatively unfamiliar to agency personnel and service provider agency staff, as well as beneficiaries. For these programs to have any widespread or lasting impact, SSA needs to embark on a major public awareness, outreach, education, and technical assistance campaign.

In addition, these programs preclude savings for non-employment related purposes and are perceived as being complex and bureaucratic in nature. Thus, while SSA has taken steps to improve its return-to-work services through the provision of work incentives, these efforts are hampered by the underlying program rules that were designed for individuals assumed to be permanently retired from the workforce and individuals who were viewed as unable or unlikely to work in the future. 

Peer Support

The Committee identified a need for strong peer support for individuals and their families transitioning from the 14(c) program to a supported employment environment. The consumers the Committee met with in Vermont, for instance, described how helpful their peers were in resolving workplace issues they encountered. Some of the issues included how to talk to coworkers who were rude or how to speak with supervisors. One worker, who now has a job at a music store, stated how important peers have been to him.

In the 1970’s, Congress passed the Development Disabilities Bill of Rights Act. This legislation created an infrastructure of state developmental disability planning councils, the University Affiliated Centers (now known as Centers of Excellence) and the Protection and Advocacy system. Within these systems much has been done to build both peer and family support programs. These programs have proved helpful in those states that have closed institutions. This same type of support would be most helpful to create successful transitions from sheltered workshop settings to integrated competitive employment opportunities. NCD’s recent report on the Developmental Disabilities system offered recommendations to improve coordination and peer support. This issue could provide an excellent opportunity for all the partners to come together and make system change for the benefit of persons with intellectual disabilities.

Notification of Services

Through the course of this effort, the Committee found individuals who are currently in the 14(c) settings earning subminimum wages who have had very few opportunities to learn about the possibilities of integrated employment outside the workshop. Similar to the Committee’s findings regarding benefit planning and work incentives the need for knowledge is great – not unlike the needs of people in nursing homes needing to know about their rights to transition into the community. In the case of nursing home transition CMS now requires nursing home residents be given notice of the possibilities to live in the community.

A similar approach would be helpful in this context. Thus, operators of 14(c) workshops should be required to provide notice and information of the availability of supported employment services for positions in integrated employment, as well as the availability of benefit counseling and peer support. Systems change recommendations are needed to improve and enhance the supported employment infrastructure so this will not be a hollow promise.

Infrastructure

Over the course of the Committee’s site visits and general research, it became evident that financial incentives could play an important role in shifting behavior on the part of individuals, provider organizations and state and local governments. Rate-setting, contracting methodologies, Federal Medical Assistance Percentages and other considerations in the financial relationships between the federal government and state and local government entities, and that between state and local entities and individual providers, have a profound and significant impact on the likelihood of integrated employment outcomes for people with intellectual and developmental disabilities. As one state policymaker in Vermont put it, "We made the decision many years ago to invest our money where our values were, and not fund the outcomes we didn't believe in. That has made all the difference."

Throughout the history of supported employment services, federal funding policies in both the Medicaid and vocational rehabilitation programs have profoundly impacted the expansion of integrated employment outcomes for people with intellectual and developmental disabilities. Several states NCD visited credited key initial efforts to build supported employment infrastructure to systems change grants provided by the Rehabilitation Services Administration over the course of the 1980s, at the behest of then Assistant Secretary of Education for Special Education and Rehabilitation Services Madeline Will. Numerous other examples of federal policy changes impacting or having the potential to impact the rate of growth in supported employment services emerged during our site visits.

Prior to 1997, Medicaid waiver funding had a limited impact on supported employment services as compared to the vocational rehabilitation system. Before the Balanced Budget Act Amendments of 1997, which expanded the availability of supported employment services to all people receiving services under the HCBS waiver, people with disabilities could only receive supported employment funding from Medicaid if they had previously been institutionalized. [viii] As a result of this policy shift, federal supported employment expenditures under the HCBS waiver jumped from $35 million in FY 1998 to $108 million in 2002. [ix] Unfortunately, this increase in supported employment expenditures seems to have come primarily from a relatively small group of states. [x]

States with strong track records of integrated employment outcomes have reflected a values-based philosophy in their financial arrangements with providers, reflecting a strong preference for integrated employment outcomes as opposed to segregated and non-work options. Approaches varied significantly, but all carried with them an explicit and unequivocal endorsement of integrated employment as the preferred outcome for people with disabilities. Vermont decided to stop funding new entrances into sheltered workshops in 2000 and by 2002 had decided to close its workshops altogether utilizing a three-year phase out period. According to state officials, the last workshop was closed eighteen months later in 2003. Today, Vermont’s integrated employment rate for people with developmental disabilities is twice the national average. [xi] 

Other states have adopted strategies focused more specifically on expanding supported employment services. A growing number of states are adopting the Employment First model as the guiding philosophy for their day and employment services, setting an expectation that integrated employment should be considered the first and preferred option for all people with disabilities, including intellectual and developmental disabilities. Some participating states, such as Tennessee, have adjusted their rate setting to align with this philosophy. [xii] At least one state – Oklahoma – has adopted a performance based rate-setting system within their developmental disability service-provision system, paying for hours worked, rather than hours of service provided. This has incentivized service-providers to maximize the use of natural supports, accommodations and other similar strategies that enhance the independence of the employee with a disability. [xiii]  Almost all states which have been successful in expanding integrated employment services have depended on close collaboration between the state ID/DD and vocational rehabilitation agencies.

Unfortunately, despite promising outcomes in several key states, the national picture for supported employment services has been worsening over the course of the last decade. Between the mid-1980s and mid-1990s supported employment services expanded rapidly, driven by key federal investments and the expansion in expertise and awareness of the potential for this form of service-provision for individuals who have historically been excluded from employment. The integrated employment rate for people receiving services from a state ID/DD agency peaked in 2001 at 25%. Since then, it has declined to 20.3% in 2009.[xiv]

Additional federal investments are necessary to encourage states to shift funds away from sheltered workshops and non-work day services towards supported employment services and integrated employment outcomes.

Transformation of the 14(c) Program

The Committee recommends that the Section 14(c) program should be phased out gradually to provide adequate time for transition to new alternatives. The Committee recognized early on in this project that any statement of public policy or recommendation to the U.S. Department of Labor or the Congress to simply eliminate all Section 14(c) certificates would jeopardize the security of many individuals who are currently involved with the program. The committee realized what is needed is a conversion or transformation strategy and phase-out of a relic in policy left over from the 1930’s. To that end, this report offers a systems change approach to focus on a comprehensive system of support that will result in greater opportunities for persons with developmental or intellectual disabilities. This approach includes formal requirements of mandatory information sharing to workers, to informal systems of peer support as well as incentives to states and providers to expand supported employment services in integrated settings.

The Committee realizes that change will come slowly and the facts on the ground require a phased in approach to support people who currently receive subminimum wage be given the chance to earn at least minimum wage or greater. In addition, the Committee learned that younger workers have a higher expectation of employment than older workers and there is a real need to prevent those graduating from high school from entering the workshop environment. This was best demonstrated by a man from Baton Rouge, Louisiana, whose family had this insight early. Eighteen years ago, his family realized his potential and rather than let him stay in a workshop, worked with a provider to get him a job in McDonald’s. He has been there ever since and told the Committee how much he enjoys the work, lives in the community, and is much happier than when he was at the workshop. His sister reported that he considers the lobby as his lobby and has worked with many different managers who end up relying on him regarding how the lobby is cleaned and organized.

To accomplish this transformation, the first step is to prohibit the Department of Labor from issuing 14(c) certificates following the passage of the legislation. As part of this phase of the effort, NCD also recommends prohibiting any Individualized Education Plan (IEP) to identify placement in a subminimum wage program as a permissible goal (see Department of Education recommendation).

The second phase will require all providers who administer 14(c) certificates to convert to a supported employment model supporting persons with developmental or intellectual disabilities in an integrated competitive environment. Even this conversion should be phased in with priority given to those persons who have held a 14(c) certificate for ten years or less. Those individuals should be supported in an integrated setting within two years.  

Those individuals who have held a 14(c) certificate for a period of time between ten and twenty years should be supported in an integrated setting within four years, and all persons who have held a 14(c) certificate for any period of time greater than twenty years should be supported in an integrated setting within six years. 

Education Systems Change

During the Committee’s site visits it became clear that two key indicators suggested an individual was more likely to choose competitive employment. The first indicator was age, with younger individuals with disabilities more likely to advocate for competitive employment at or above the minimum wage. In addition, young people transitioning to work out of inclusive K-12 education environments where they had access to the general curriculum and experiences in integrated classrooms were also most likely to state a desire for integrated employment. In these cases, parents also seemed more likely to support this desire.

Although few states demonstrated clear alignment between education planning and post school outcomes, the state of Washington intentionally begins focusing on employment outcomes for all students beginning in early childhood. For instance, elementary school aged children (including students with intellectual and other disabilities) may be supported to take on chores, school responsibilities, and other activities that develop job skills alongside their peers without disabilities. It was clear from the Committee’s visits that an individual’s desire to work at all, and at what wage, was influenced heavily by the expectations that were set for that individual beginning in childhood and all the way through school. It is because of this change in expectations that the 14(c) program is outdated in 2012 and needs to be phased out.

Further, with NCD’s recommendation to convert the 14(c) program to a supported employment model for persons with disabilities to work in integrated settings with competitive wages, it is imperative that students are educated in integrated environments. Students with disabilities, including those with intellectual disabilities, need to access the general curriculum in inclusive settings beginning in early childhood. Students who learn in segregated settings are less likely to believe they can earn money in competitive, integrated settings as adults.

Participation in inclusive settings should include both academic work and opportunities to take on their share of classroom chores and responsibilities along with their nondisabled peers. It is important to note, however, it is not helpful for students with disabilities to be assigned chores and work in place of academics, nor be assigned work and chores not typically assigned to non-disabled peers. All of this will lead to an expectation that meaningful work in an inclusive environment is possible and part of each student’s future.

To that end, students with disabilities need to have the high school credentials and the same access to higher education as their contemporaries without disabilities. Failure to earn a high school diploma or GED is a nearly insurmountable barrier to employment for all people. Students with disabilities are no exception. Students with disabilities should be supported to pursue diplomas, and states should pursue the development of statewide standards for achievable diplomas which demonstrate content mastery, and the ability to complete school and attain goals. Oregon offers an example of this type of statewide approach to rigorous, attainable goals for students with intellectual and learning disabilities through its statewide modified and extended diploma standards.

Obtaining this credential is vital for some students with disabilities who may benefit from pursuing postsecondary educational opportunities, either in a four year institution or in a certificate program at a community or technical college. Recent changes in the law surrounding the Free Application for Federal Student Aid (FAFSA ) create new barriers for students with disabilities through the elimination of the Ability to Benefit Test. Under these changes, students with disabilities who have not earned a standard diploma or GED are not eligible for any federal aid, including loans or Pell grants, even if they have been admitted to a postsecondary institution. This shuts the door to affordable training programs that might help more individuals with disabilities, including intellectual disabilities, gain skills in trades, culinary arts, child care and other programs offered at these institutions. This issue needs to be reexamined.

Enforcement

In 2009, the Civil Rights Division of the Department of Justice launched an aggressive effort to enforce the Supreme Court's decision in Olmstead v. L.C., [xv] a ruling that requires states to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs. States are obligated to maintain plans demonstrating movement of persons with disabilities living in such institutions to community based settings with support. The Department of Justice is seeking similar authority to move persons with disabilities in segregated worksites to more integrated employment settings and has filed a Statement of Interest asserting that the “integration regulation prohibits the unnecessary segregation of persons with disabilities by public entities in non-residential settings, including segregated sheltered workshops."  The recommendations contained in this report provide a road map for movement to community inclusion and integrated employment for all.