NYSABA Parent Website Article Transition to Adult Services
Cindy Alterson, PhD, BCBA-D Devereux Advanced Behavioral Health- New York firstname.lastname@example.org
When individuals with autism graduate from high school, or “age out” of educational services at 21 years, the options and opportunities for continued supportive services are varied. An individual may choose to attend college, a vocational training program, or may need further assistance and support in order to learn skills needed for independent leisure, work and living. The process to access these services can be confusing and arduous.
For the purposes of this post, we are assuming that the individual transitioning will require continued support from an agency in the areas of vocational and residential options. OPWDD is the entity through which services are obtained in New York State. Each geographical region in NY has a DDRO (Regional Office) that oversees the services in that assigned area
1. What to know before you start You should consider registering your child for eligibility for OPWDD services as early as the age of eight. This allows the DDRO to “know” the number of individuals in their region and to do some advance planning about what type of services may be needed in the future. Additionally, your child may be eligible for respite or other community services between the ages of 8-21. For example, if your child is registered at the age of 8, and at the age of 16 they have a behavioral crisis, you may more quickly access services without having to apply during the crisis. At age 21, if your child has been determined to be eligible for OPWDD day services, parents/guardians are encouraged/required to attend a training given by their local DDRO that outlines the process to access them. This is called the “Front Door” Process. Each DDRO offers these trainings monthly. The parent/guardian should consider attending a training in the spring before their year of graduation. There is an online registration for this training. The process for accessing residential services from OPWDD is entirely different and evolving annually. As of the writing of this article, the only individuals who are guaranteed placement as an adult (in a group home for example) are those who are aging out of a residential school program. This process typically begins two to three years before the individuals graduate. All agencies who wish to serve a group of individuals post-age-21 submit a proposal to OPWDD and parents/guardians can work with those agencies and choose between them for their child’s future living options. Individuals who are living at home upon high school graduation, but whose parents/guardians would like them to live in an agency home, need to submit an application for their child for “Certified Residential Opportunities.” Based on the information provided in the application, the individual is assigned a priority level for services. Higher priority is given to individuals who are at imminent risk for injury to self or others.
2. Questions for the BCBA OPWDD regulations do require that if an individual demonstrates significant behavioral issues, a functional behavioral assessment must be completed towards the development of a behavioral intervention plan.
However, OPWDD regulations do not require that people writing behavior plans are BCBAs. They can be licensed psychologists, LCSW, or disciplines that may or may not have specific experience with behavior analytic assessment and intervention procedures. If the staff writing behavior plans for an adult service agency is not a BCBA, possible questions to ask include: What is your experience conducting a functional behavioral assessment? The staff should at least be able to identify that these behaviors typically serve a purpose for the individual and occur for a communicative reason. They should understand that the goal of an FBA is to determine as best as possible that purpose and communication. What kind of intervention plans do you recommend? The staff should be able to say that depending on the purpose of the behavior, the intervention plan would include alternative, appropriate communication strategies so that the individual can access that in a more positive way. Additionally, the staff should be able to talk about positive environmental modifications to allow the individual to avoid if possible, the situations that lead to the challenging behaviors until such time as they can more effectively communicate their wants and needs. What kind of training and oversight do the staff receive to implement the behavior plans? Staff should be able to describe how they train, how often they observe the plan in action, and how/when they give and solicit staff feedback on implementing behavior plans.
3. Materials you may want to have To register for OPWDD eligibility, the materials you will need include: a medical assessment including a physical evaluation completed within one year: a current psychological evaluation (such as WAIS-IV, WISC-IV, WIPPSI, C-TONI-II, Leiter-R or Stanford Binet-V, the most updated version); current adaptive behavior information; a current psychosocial history including birth and developmental history; clinical information completed prior to the age of 22 documenting the presence of a qualifying condition in the absence of an intellectual disability (i.e. neurological evaluation, genetic testing, developmental pediatric evaluation, comprehensive ASD specific assessment).
4. Data collection Individuals receiving adult services will need to have an Individualized Service Plan (ISP). In some ways, this is similar to an Individualized Education Plan (IEP) in that it defines the goals of the individual. However, the prevailing philosophy of OPWDD is in Person Centered Planning. It is critical that the goals on the ISP are the expressed wishes of the individual (however they may express that). The goals tend to be more global and less behavior specific. An individual’s ISP goals may be “Person wants to increase their involvement in community leisure activities” and it is the responsibility of the agency to make that happen. It is not likely that “Person wants to decrease their aggressive behavior” because this is typically the wish of others not the individual who is the subject of the ISP. Data collection on the global ISP goals is required. The data that is expected typically needs to include the day/time the goal was addressed and for how long, a narrative statement of the individual’s progress towards the goal, and the number of prompts if any, the individual needed to attain the goal on that day.
5. What to expect School districts vary in their knowledge and ability to help parents and guardians manage this process. Regulations require that transition plans are developed on the individual’s IEP during the year they turn fourteen, but these are often just statements on what type of job or living situation the individual may require upon graduation, not necessarily how to get there. It is also not the district’s responsibility to ensure a placement upon graduation. The current gatekeeper for post-21 services of the type we are talking about above is Medicaid (because Medicaid funds these type of services) and a Medicaid Service Coordinator is critical to help parents apply through this process. You should also expect to have to do a lot of your own research on the current standing of the process, as mentioned earlier, it is changing annually. New York State is moving towards a managed care model of services which would put more choice and responsibility in the hands of the parents/guardians/individual and would change the entire process.
6. Books and resources www.opwdd.ny.gov website of the Office for Persons with Developmental Disabilities