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This document has been archived because some of the information it contains may be out of date. (Effective January 2010)

Supporting Families to Coordinate Cross-Agency Benefits and Utilize Work Incentives

by Kris Schoeller

The Brown family has three children with disabilities. Ann, who is currently in a transition program in her school, has Down syndrome. She has been on Supplemental Security Income (SSI) and Medical Assistance (MA) for three years and has held a competitive job, with school support, for most of that time. Although the Social Security Administration (SSA) had sent written information periodically during that time, they had not conducted a formal review of the family’s benefits in those three years. When the family attended a parent workshop on SSI and Work Incentives, they became very concerned when they heard that in order to receive SSI the limit on Ann’s resources was $2000, and that her wages must be reported in order to adjust the SSI amount. Ann’s savings and checking account was over the $2000 limit and no wages had been reported. The Browns immediately made copies of their bank statements and pay stubs and made an appointment with SSA. They felt that if they showed good faith, SSA would not penalize them for misunderstanding the information and limits. Because SSA rules state that a person “should have known” (20CFR416.552[abc]) the agency would not consider a waiver of overpayment. For each month that Ann had a balance exceeding $2000, the family owed the entire SSI amount, a total of $12,000. To add to the problem, SSA staff suggested there may be fraud charges. Ann was immediately dropped from SSI and Medical Assistance. Her file was placed in inactive status. They were told that as long as she didn’t reapply they probably would not attempt to retrieve the overpayment. If they did reapply, the overpayment would be collected on a monthly basis.

The lives of families who have children with disabilities can be overwhelming. During the transition years (ages 14-21), life can become even more complex with the addition of outside agencies and benefits. The language and regulations for each agency are often difficult to understand, and confusion or lack of awareness regarding all the requirements on the part of families are not uncommon.

Study of Families Receiving SSI

This article presents findings and discussion from a follow-along study of six families involved with SSI and Social Security Disability Insurance (SSDI) who documented the problems they experienced navigating the systems involved, and have made recommendations to improve the ability of families to utilize SSI/SSDI work incentives to enhance employment results for their transition-age member with disabilities. The follow-along study in which they participated was conducted by the Institute on Community Integration at the University of Minnesota, and The Study Group, Inc., with funding by the Office of Special Education and Rehabilitative Services, U.S. Department of Education. Its goal was to develop and test strategies for increasing utilization of SSI/SSDI work incentives for enhancing employment of transition-age youth with disabilities.

Six families with a total of seven youth, ages 18-21, from the St. Paul (Minnesota) Public Schools’ Focus Beyond Transition programs participated in the study. The young adults were 18-21 years old; five had mental retardation with or without other conditions, one had learning disabilities and behavioral needs, and one had post-polio syndrome and mental health needs. Their cultural and ethnic heritage was Caucasian (4), Vietnamese (1), Hmong (1), and African American (1). Three of the families had been denied SSI benefits as a result of the redetermination process at age 18. Two families had received notice of overpayment, one of whom owed a substantial amount due to a misunderstanding of resource limits and SSA’s failure to conduct any review in three years. One family had been switched to SSDI as a result of their son’s work history and earnings, and one family struggled with the interface between multiple benefits (housing, waivers, SSI and Medical Assistance [MA]).

Six Major Issues for Families

Six major themes related to their experiences with SSI were identified by the families, youth, and the professionals who worked with them. They were:

• The information and process regarding SSI/SSDI/MA, work incentives, and how wages impact these benefit programs is confusing and overwhelming for families, youth, and transition planning teams. They suggested that a single point of contact, a person knowledgeable about SSI/SSDI, work incentives, impact of wages on SSI/SSDI and other benefits such as Section 8 housing and Medicaid, be part of the transition team to address these issues.
• Parents, youth and professionals do not have adequate knowledge of what assessment and disability/work related information was needed by Social Security and Disability Determination Services (DDS), especially during the redetermination process at age 18.
• Although SSA sends written communication to families and youth regarding eligibility and resource requirements, families don’t fully understand and comply with resource limits and wage reporting requirements, causing overpayments. Many families are engaged in communication with multiple agencies to secure medical, educational, and functional supports for their child. This often results in families not tracking the different requirements for each.
• Staff in the Social Security Administration, education, rehabilitation, and other services/agencies lack adequate education in cultural competence, sensitivity, and awareness.
• Emotional/behavioral disorder (EBD) does not translate into an SSA mental health diagnosis.
• There is little benefit for families and youth to use the Plan for Achieving Self-Support (PASS) and Impairment-Related Work Expense (IRWE) work incentives while still in transition school programs.

Below are summaries of their comments on each of the six areas.

Confusing and Complex Process

The system is too complex for many teachers or families to navigate. They continue to need information and support to clearly understand the application and reporting processes, resource requirements, the differences between SSI and SSDI work incentives, and the impact of wages on these benefits. Outcomes for youth with disabilities would improve if transition services provided a service coordinator to work with families, youth, and transition planning teams to coordinate and navigate multiple service systems. SSA has currently established Employment Support Representatives, and in all states funded Benefits Specialists, who will work with families and community agencies in this regard. More are needed.

Process During Redetermination at Age 18 Lacks Uniformity

Many of the denials at age 18 redetermination are based on inadequate information from education, health and human services, and rehabilitation services. Barriers include inadequate assessment and documentation of the disability, understanding of how the disability impacts employment, and lack of skills in reporting supports that youth receive on a job. With better coordination and communication to adequately document and articulate the supports provided to youth by teachers and rehabilitation counselors during the transition years, DDS and SSA would better understand the employment assistance that students receive. Developing a uniform student reporting form for all outside agencies would also help in obtaining better information on students. Ongoing training and technical assistance for families, youth, and all those individuals involved in the transition process would increase the likelihood of complete and accurate reporting.

Fear of Overpayments

Families are overwhelmed with the day-to-day needs of parenting children and youth with disabilities. Some families are working with multiple agencies and medical experts, each using terminologies that are difficult to understand and each with eligibility and maintenance systems that are complex. In addition, for some families English is their second language or they do not read. Thus, the information regarding limits on resources and impact of wages on benefits is not always completely understood. This results in overpayments, some very excessive. The fear of overpayment was an ongoing passionate concern and tremendously stressful event addressed for these families. SSA holds all beneficiaries responsible for knowing and understanding these requirements. Annual reviews could result in catching problems and lessening the amount owed in overpayment. Ongoing outreach and training for families and consumers would increase their knowledge. Families can better process and understand complex information when it is presented informally and, if possible, in person rather than in writing by teachers, county social workers, rehabilitation counselors, SSA outreach employment specialists, or others who are able to meet with families and to address these issues.

Need for Cultural Competence

Education in cultural competence, sensitivity, and awareness is needed across agencies and systems. For families who are not citizens of the U.S., do not speak English, and/or do not understand our government bureaucracies, issues of trust and communication are prevalent. Many families from other cultures depend on many human services programs. When facing employment and wages that will impact benefits, they are fearful of losing those benefits and may refuse employment and career development options for their youth. Teachers are required through IDEA to develop career/vocational skills for students in transition, thus causing a conflict between education and families. Although SSA is working at making it a priority to hire culturally diverse staff, additional training for all transition agency staff in both cultural competency and the benefits programs is needed.

Aligning School/Adult Requirements

Aligning school disability labels with the diagnosis requirements for eligibility in the adult system could greatly help families and youth to acquire and maintain supports and benefits and increase employment opportunities. The label of emotional/behavioral disorder without a psychiatric diagnosis does not meet eligibility criteria for SSI or health and human service benefits. For many youth, health insurance is also unavailable and schools do not employ psychiatrists for this diagnosis. Without Medicaid or Medical Assistance they will go undiagnosed, untreated, and unsupported. Youth with the EBD label would benefit from access to an adult diagnosis.

PASS and IRWE Rarely Used

There is little reason for youth in transition to apply for a Plan for Achieving Self-Support (PASS) or Impairment-Related Work Expenses (IRWE). Most youth who receive transition services through IDEA have access to services and supports for employment and career development. Transportation, assistive technology, job development and coaching, and in some states, post-secondary enrollment option programs, are part of transition planning and services. It would not be necessary for youth to use their own earnings to pay for these services, as they would be covered by the educational system while the youth is still in school. Some may want to write a PASS during their final year in school to set aside earnings for college tuition or transportation needs following transition services. Many adults who would require job coaching or assistive technology will have access to those services through their Developmental Disabilities or Rehabilitation Services.

Conclusion

Additional studies are needed to evaluate the need for and effectiveness of interagency service coordination and benefits analysis for transition aged youth, families and the professionals that support them. The SSI program and its work incentives must be viewed as a viable option that supports students in transition and the attainment of adult life outcomes. Families and youth who participated in this follow-along study value the financial and health benefits from SSI and Medical Assistance. Involving families and youth in future Social Security discussions and planning may improve policy and program implementation for easier access and utilization of the work incentives for employment.

Kris Schoeller is a Training Coordinator and Transition Specialist with the National Center on Secondary Education and Transition, Institute on Community Integration, University of Minnesota, Minneapolis. She may be reached at 612/624-2376 or by e-mail at schoe043@umn.edu.

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