My son just had his 14th birthday. He has historically engaged in challenging behaviors such as physical aggression and elopement. He is currently in a special education setting with teachers capable of coping with these behaviors. We are concerned about what happens when he graduates and ages out of that setting. Is it too early to start planning the transition to adulthood?

Freddie Scibelli, MEd, BCBA, LABA, Kim Duhanyan, MEd, BCBA, LABA, and Silva Orchanian, MEd, BCBA, LABA
Melmark

Introduction

Adult Services AutismThis is an excellent question and one asked by so many parents of adolescents with ASD. Transition planning for individuals with special needs is a complex process that often raises anxiety for family members, and requires consistent attention as the individual moves through their teenage years. Transition planning for a young adult with severe challenging behaviors, significant cognitive impairments, and communication deficits is an even more complex and elaborate process. In these cases, care must be taken to match the individual to settings that can meet their complex behavioral needs and provide adequate support services (Beasley, et al, 2016). Furthermore, transition services should always be designed to improve the quality of life for an individual diagnosed with a disability (e.g., Friman, 2018; Gomez, et al., 2021), and this must remain a priority when planning for those with more severe challenging behavior.

In short, for young adults who exhibit severe challenging behaviors such as aggression and self-injurious behaviors, the services related to transition planning need to be scrupulously planned. Proper preparation and planning will not change the complexity of the task at hand, but it will put the individual on the path to a successful journey into adulthood. Transition dates vary between states, generally ranging from 21-22 years old; however, transition planning should begin many years prior. Organizing your unique considerations and questions is an essential component of the transition planning process.

Some Important Considerations

Let’s take a look at some considerations when determining the best fit for an individual, like your son, with challenging behavior who is also transitioning to adult services.

  • Vision: Do the team members have a relevant vision of the individual’s strengths and preferences, and has it been taken into consideration? Individuals receiving special education services should have a vision statement tailor-made for them that lays out both long and short-term goals (Lee, et al., 2020). These goals will need to be adjusted and assessed as the individual’s preferences and desires evolve, but a solid vision will help narrow down the type of services necessary. Some states have individual vision statements built into the individualized education programs. Vision statements also provide a reminder to the team about the most important ultimate outcomes.
  • Matching the Individual to the Setting: When an individual has more significant support needs, attention must be paid to all elements of care. When searching for an organization, be prepared to ask basic questions such as how many consumers does the organization serve. Do they have a Parent or Human Rights Committee (e.g., Stein, 2017)? What is the profile of consumers they serve within their organization? Having a good understanding of an organization’s basic philosophy and purpose may give insight as to whether this organization would be a good fit.Once your organizational boxes are checked, you can start to dive more deeply into how an organization can serve your son. Gather information about their overarching clinical philosophy addressing challenging behaviors and an understanding of how the organization addresses the severe challenging behaviors your individual typically exhibits (e.g., Beasley, et all, 2016). There can be differences in the way school services and adult services track severe challenging behaviors. Get an understanding of how the organization determines whether a consumer is clinically succeeding in their program. This should fall in line with a consumer’s vision, with the family’s goals, and with the general priorities of the individual.
  • Ensuring Medical Needs are Met: Medical questions may also play an important role in choosing the right fit for your consumer (e.g., Valdovinos, et al., 2017). Does the organization plan to meet on a regular basis to discuss the medical needs of your son (if warranted)? Does the organization have a philosophy on using medication to address behaviors? You may already have key pieces in place to meet your consumer’s medical needs.  In that case, you will need to know whether that organization will be willing to work with that team or carry on the plan. Day-to-day health should also be taken into consideration. How an organization can help guide and encourage your consumer to make healthy lifestyle choices may vary. Work with your current team to assess where your consumer’s current needs are in this area. Base questions with those needs in mind to get a solid understanding of how an organization can serve your family member.
  • Understanding behavior management: In recent years, providers have experienced a drastic increase in operational vacancies across the board. Talk to your prospective organization about their personnel. What is their current vacancy rate for direct care positions, what is their process for hiring new staff, and what does staff training look like? Since your son exhibits severe challenging behaviors, ask questions surrounding how a staff member is trained to work with those behaviors. It may be helpful to use real examples. Ask questions about the specific problem behaviors your son exhibits and how the organization would respond to those behaviors.
  • Ensuring that Communication Needs are Met: You may be reading this article because you are an advocate for an individual who exhibits severe challenging behaviors, but how does the individual advocate for themselves? These are skills to be fostered and maintained. It is critical for individuals to maintain previously learned communication skills, in order to ensure that challenging behaviors do not emerge as a consequence of skill loss. Episodes of severe challenging behaviors can often hinge on two factors: a person’s ability to accurately express their wants and needs paired with their communication partner’s ability to meet those needs. A placement’s lack of experience in a particular mode of communication may be a signal that they are not a good fit for an individual. Some questions to consider: What are an individual’s primary and secondary modes of communication (e.g., verbal communication, sign language, augmentative and alternative communication devices, etc.)? Does the prospective adult placement have experience in those modes of communication? Will a placement accept training on your individual communication skills? How have they worked with past clients who struggled with expressing themselves? Ensuring continuity of care in meeting communication needs is essential.
  • Supports and Accommodations: Many individuals receiving special education services have specialized supports and accommodations built into the many aspects of their day. From individualized schedules of reinforcement to specialized academic materials and instruction, the individuals we serve have relied on those supports to live successful and self-determining lives. Planning the entry into adult services is a great time to take inventory of those supports. Knowing what accommodations can be supported by an individual’s prospective adult placement is pertinent information. This could also be a great opportunity to assess levels of success and independence with faded supports prior to making the transition. Assessment of what supports can be faded can be evaluated with an individual’s team prior to transitioning, which may help promote overall independence. An individual who exhibits severe challenging behaviors can still possess and expand independent skills. Maximizing these skills is important for the individual’s quality of life.
  • Another Consideration: Community Access: The occurrence of severe challenging behavior should not inhibit a client’s access to the community (e.g., Savage & Bowers, 2022). Additional planning will be key to ensuring successful access to the community. Planning should take into consideration variables such as the function of the client’s severe challenging behavior as well as their preferred community outings. For example, your client or loved one may enjoy making a daily trip to purchase a cup of coffee. They may also exhibit self-injurious behaviors when overwhelmed by a busy community setting. The team may need to plan for the excursions, factoring in aspects such as the local coffee shop’s peak hours and the specific physical environment.

Final Thoughts

The transition to adult services may appear daunting and scary for many stakeholders, including advocates and family members. After years of educational services which included specialized services such as Occupational therapy, Speech therapy, and Physical therapy, as well as other services, the thought of faded supports and limited services can be a challenge. It is critical to serve as a strong advocate for your consumer while also balancing the opportunity to allow them a level of independence and growth.

As you initiate your quest for the appropriate adult placement, use the process of finding the right setting to gain insight and knowledge into the world of adult services. The team should work with you to understand your individual’s needs, to plan for their success and support, and to increase their independence and quality of life. Consider examining the vision for this individual, and the extent to which the setting can meet their medical, behavioral, and communication needs. Examine strategies that could bolster their success, such as the provision of support and accommodations, and assess how the setting will ensure access to the broader community.

Transition Planning Checklist

Timing AREA of INQUIRY QUESTIONS TO ASK CONSIDERATIONS Follow Up
PRE-VISIT
To be assessed throughout transition planning beginning in pre-teen years		 Vision -Is a vision articulated by team?
-Are there identified short term goals?
-Are there identified long term goals?		 -Can goals be addressed?
-Is the vision supported by the team?
-Have preferences been assessed and integrated?
-Has the individual been included maximally?
Pre-Visit and During Visit/Intake Match Assessment -How large is the organization?
-Does the organization serve similar individuals?		 -Is the philosophy of care in line with the vision?
-Is the behavioral approach compatible with what has worked best?
Pre-Visit and During Visit/Intake Medical Needs -How are medical needs met?
-How is healthy living fostered?		 -Are psychiatric and medical staff regularly available?
-Is it possible for staff to consult with outside providers you wish to continue to involve?
Pre-Visit and During Visit/Intake Behavioral Needs -How are challenging behaviors assessed?
-How are plans developed?
-Is there a Human Rights Committee?
-How often is behavioral progress reviewed?
-Are individuals discharged for behavioral difficulties?		 -Prepare a clear summary of the behavioral history and provide a copy of the current plan.
Pre-Visit and During Visit/Intake Communication Needs -Are Speech and Language Services available?
-What forms of communication does the organization currently support in their participants?		 -Prepare a clear summary of the communication abilities of the individual that includes information on the form of the communication, including any devices or programs used.
Pre-Visit and During Visit/Intake Accommodations -Is the organization able to provide the needed supports and accommodations?
-How are decisions made on ratio and on staff proximity?		 -Have a list of all needed supports and accommodations that may be needed.
Pre-Visit and During Visit/Intake Community Access -How are individuals exposed to or granted access to the community? Ask to see a schedule of community outings
Pre-Visit and During Visit/Intake Quality of Life -How is Quality of Life integrated into assessment and intervention? -Consider elements that you believe are important for your individual to have a high quality of life.  Assess whether they are available in this setting.
Any time Additional Concerns

 

References
​

Beasley, J. B., Klein, A., & Weigle, K. (2016). Diagnostic, treatment and service considerations to address challenging behavior: A model program for integrated service delivery. In Health care for people with intellectual and developmental disabilities across the lifespan (pp. 1629-1644). Springer, Cham.

Friedman, C. (2018). Direct support professionals and quality of life of people with intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 56(4), 234-250.

Gomez, L. E., Schalock, R. L., & Verdugo, M. Á. (2021). A quality of life supports model: Six research-focused steps to evaluate the model and enhance research practices in the field of IDD. Research in Developmental Disabilities, 119, 104112.

Lee, C. E., & Burke, M. M. (2020). Future planning among families of individuals with intellectual and developmental disabilities: A systematic review. Journal of Policy and Practice in Intellectual Disabilities, 17(2), 94-107.

Savage, T. A., & Bowers, A. (2022). Dignity of risk, Intellectual/Developmental Disabilities, and living in the community. Perspectives in Biology and Medicine, 65(2), 262-273.

Stein, M. A. (2017). Disability human rights. In Nussbaum and law (pp. 3-49). Routledge.

Valdovinos, M. G., Schieber, E., McMahon, M., Beard, L., Wilkinson, A., & Carpenter, J. (2017). Adverse side effects of psychotropic medication and challenging behavior: Pilot work assessing impact. Journal of Developmental and Physical Disabilities, 29(6), 969-982.

Citation for this article:

Scibelli, F., Duhanyan, K., & Orchanian, S. (2022). Transition planning as it relates to challenging behaviors: Matching the individual to the right setting for adult services. Science in Autism Treatment, 19(10).

Other Related Clinical Corners Articles:

Related Interviews and Perspective Pieces

Related Media Watch Letters:

Other Related ASAT Articles

 

#Adolescents #Centerbased

 

Print Friendly, PDF & Email