Dear Ms. Polaneczky,
In response to your four-part series titled “Falling Off the Cliff,” that was recently published in The Inquirer, we would like to share our feedback regarding several main points of your article. You highlighted important experiences of adults with disabilities and their families, including the long wait list for funding resources for adults in Pennsylvania, the barriers that occur when school-aged entitlements end and the Adult Services system begins, and the need for better trained and better paid direct support staff, to name a few.
While we emphatically agree with all of these points, and are equally concerned about the difficulties that are faced by adults with disabilities and their caregivers, we also feel it is important to point out that there is a body of literature that exists to inform the field of how to address many of these issues, including staff training, professional development, and transition services for students with disabilities, that should be adopted as industry standards. Additionally, there are federally funded programs of which all school districts need to be aware to support the transition process for their students as outlined below.
Your article rightfully points out the perils of adults with disabilities and their families when school-aged entitlements end. However, it is important to note that the ending of these entitlements can be planned for with appropriate attention to transitional needs. The Federal law, entitled Individuals with Disabilities Education Act (IDEA) [1], requires schools to provide transition planning for students with disabilities. IDEA “includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation” (IDEA, 2004). Furthermore, research supports practices that aid in successful transition services for students, including use of scientifically-based strategies to promote independence (Schall, Wehman, & McDonough, 2012). Providing students with the skills necessary for adulthood can decrease the crisis families face as they wait for access to funding. Additionally, school districts becoming educated on the funding options for adults with disabilities to help families prepare is critical, including not only an understanding of Medicaid Waiver options, but also Vocational Rehabilitation funding [2]. This requires that PA school districts provide educational services to students with disabilities that give each student the opportunity to make meaningful and “appropriately ambitious” progress as indicated in the recent Supreme Court decision Endrew F.v. Douglas County School District during their IEP years. The absolute best preparation for a meaningful life starts with providing an exceptional education for all children [3].
Your article also discusses the challenges of “finding good help,” and the low wages of the direct support staff. While we support the need for a better-paid work force, it is important to point out that it will take more than better pay to have a highly skilled workforce, in addition to the professional career path you wisely point out is missing in many organizations. Better education, credentials, training and supervision for direct support staff, and more training and support for front line managers, are critical to improve the quality of care for adults with disabilities. Fortunately, there is sound research supporting best practices in staff training and supervision. Ensuring employees have been trained to competency on their job responsibilities is a very important process in direct care staff training (Reid, Parsons & Green, 1989; Chok, Shlesinger, Studer, & Bird., 2013), however, traditional classroom-based training has been shown to be ineffective by itself (Fleming & Sulzer-Azaroff, 1989). Research indicates that classroom-based training, such as lectures and presentation of written material, is not effective in permanently changing or improving workplace behaviors (Alavosius & Sulzer-Azaroff, 1990), yet many organizations continue to use didactic, classroom training with little generalization to on-the-job work skills (Parsons, Rollyson, & Reid, 2012). While training using presentations and written materials can increase knowledge in certain areas, and can be important for certain knowledge requirements, it does not typically increase performance in targeted skills, which is the biggest need area for direct support staff (Parsons, Rollyson, & Reid, 2012). Skill-based competency training that includes modeling and performance feedback is necessary for effectively teaching skills (Roscoe, Fisher, Glover, & Volkert, 2006; Maguire, Weiss, & Bird, 2015). More support and funding for human services organizations to implement effective staff training, professional development, and management systems are critical for quality service delivery and prevention of serious incidents, and can decrease the amount of resources devoted to investigating these types of incidents after it has already happened. It is a more effective use of resources to develop high quality services to prevent poor, and in some cases tragic, outcomes, than money spent after these serious incidents occur.
In conclusion, your article highlighted important experiences of families and adults with disabilities that cannot be discounted. Further, you discussed important areas of need within the field of Human Services that are not currently being effectively addressed, but that certainly have the capacity to be addressed given the breadth of literature related to these issues. It cannot fall on one service system to address these enormous needs, and all service systems need to work together to ensure student and adult needs are adequately addressed, starting at the beginning of service delivery. Falling off of a services cliff is not an inevitable outcome for adults with disabilities and their families. Appropriate planning and preparation for adulthood can help to prevent these types of crises from occurring.
Sincerely,
Mary Jane Weiss, Ph.D. BCBA-D
Maggie Haag, LSW
Lifespan Content Co-Coordinators
Association for Science in Autism Treatment
and
Rita M. Gardner, M.P.H., LABA, BCBA
References
Alavosius, M. P., & Suzler-Azaroff, B. (1990). Acquisition and maintenance of health-care routines as a
function of feedback density. Journal of Applied Behavior Analysis, 23, 151-162.
Chok, J., Shlesinger, A., Studer, L., & Bird, F. (2013). A description of a practitioner training program on
functional analysis and treatment development. Behavior Analysis in Practice, 5, 25-36.
Fleming, R. K., & Suzler-Azaroff, B. (1989). Enhancing quality of teaching by direct care staff through
performance feedback on the job. Behavioral Residential Treatment, 4(4), 377-395.
Maguire, H., Weiss, M. J., & Bird, F. (2015). Supervision training: Ensuring quality of every level of an
organization. Autism Spectrum News, 8(1), 12.
Parsons, M. B., Rollyson, J. H., & Reid, D. H. (2012). Evidence-based staff training: A guide for
practitioners. Behavior Analysis in Practice, 5(2), 2-11.
Reid, D. H., Parsons, M. B., & Green, C. W. (1989). Treating aberrant behavior through effective staff
management. A developing technology. Monographs of the American Association on Mental Retardation,
12, 175.
Roscoe, E. M., Fisher, W. W., Glover, A. C., & Volkert, V. M. (2006). Evaluating the relative effects of
feedback and contingent money for staff training of stimulus preference assessments. Journal of Applied
Behavior Analysis, 39(1), 63-77.
Schall, C., Wehman, P., & McDonough, J. L. (2012). Transition from school to work for students with autism
spectrum disorders: Understanding the process and achieving better outcomes. Pediatric Clinics of North
America, 59(1), 189-202.
[1] http://uscode.house.gov/view.xhtml?path=/prelim@title20/chapter33&edition=prelim
[3] Endrew F. v. Douglas County School District RE–1, No. 15–827, (U.S. March 22, 2017).
