Facing the “Services Cliff” with Care and Compassion

By Jeff Brunner

Currently, there are 6.5 million people in the United States living with an intellectual and developmental disability (IDD) (Special Olympics). Living with IDD is a lifelong experience and parents/caregivers of these individuals are well accustomed to the necessary external support their loved ones need. While growing up there are a myriad of services such as Early Intervention for infants, toddlers, and young children and life skills curricula for high school-aged students to address challenges as they present. These benefits and others are legally binding and present through IDEA (Individuals with Disabilities Education Act), Section 504 of the Rehabilitation Act,

and ADA (Americans with Disabilities Act). Unfortunately, due to changes in eligibility criteria, participants (approximately 18-22 years) often experience the “services cliff” upon transitioning from high school to young adulthood (American Occupation Therapy Association, 2014). Thus, the world that was known through support services like personal assistants, speech-therapy, occupational therapy, social work, and transportation is no longer a reality (Roux et al., 2015).

Specifically, the services cliff happens when previously mandated entitlements through IDEA are no longer available because the individual has aged out and is no longer a student. In addition, upon graduation available post transition services like case management, community support, work and/or life skills training, and therapies are often provided through various agencies. For example, while in high school a service like occupational therapy would be provided under a student’s IEP. However, upon graduation that skilled service is no longer available and the young

adult runs the risk of declining independence with valued activities like caring for pets, performing daily self-care acts, or organizing tools to participate in preferred leisure activities with friends. Accessing such support and across various agencies takes extended time. Then once it’s discovered and/or available, individuals/families have to navigate policies, procedures, and application of care may be confusing to manage. Thus, individuals living with IDD and their families may find themselves without the necessary supports in place. To address this issue, this blog post aims to cover two points relevant to the community we serve. First, how the services cliff can negatively affect individuals living with IDD and their families. Second, how Three Rivers Community Care is working to facilitate support and services to this population to ease the strain of the services cliff.

Consequences of encountering the services cliff can be severe for those living with IDD. Without continued access to therapeutic services, one’s occupational engagement and functional mobility may suffer. This affects best independence with important day-to-day activities in the home and community and diminishes autonomy. With the lack of educational and/or vocational opportunities, there are decreased opportunities for continued growth, career exploration, and employment. And with lessened participation in social and community-based environments, an individual is deprived the opportunity to engage with peers and she or he could experience isolation. This in turn impacts one’s overall mental health and well-being while decreasing visibility of members of the IDD community within typical settings.

To acknowledge and combat the services cliff, Three Rivers Community Care works diligently and collaboratively alongside individuals living with IDD and their families. This applies to both post-

high school transition individuals and established adults. Our staff facilitate best participation in self-care, home management, leisure, and community activities. This is completed with waiver-based clients during In-Home and Community Support. Residential Services are in place to provide 24/7 coverage for clients while encouraging independence and safety within the home and community. Music Therapy services are applied to address physical, emotional, cognitive, and social needs of individuals and sessions are unique to a client’s diagnosis and desires. Occupational Therapy is available to address functional activities that are important to a client across contexts while directing education to families and support staff to enable practical and sustainable care. The Community Center offers inclusive social and functional activities for free or low cost. Lastly, administrative and client support staff are knowledgeable and welcome on-going communication to find, establish, and maintain services that cover the best care our clients deserve.

The services cliff experienced by individuals living with IDD presents challenges and setbacks for participation in potentially all aspects of their lives. Committed support systems that bridge transitional periods and provide care well into adulthood are essential for sustained inclusion, independence, and quality of life. Staff at Three Rivers Community Care are compassionate, knowledgeable, and goal oriented. We strive to establish these stated outcomes for clients and their families who rely on us for care.

References

American Occupation Therapy Association. (2014). Adults with intellectual and developmental disabilities : strategies for occupational therapy.

Bagenstoa, S.R. (2015). The disability cliff. Democracy: A Journal of Ideas. Retrieved June 15, 2023, from https://democracyjournal.org/magazine/35/the-disability-cliff/

Roux, Anne M., Shattuck, Paul T., Rast, Jessica E., Rava, Julianna A., and Anderson, Kristy, A. (2015). National Autism Indicators Report: Transition into Young Adulthood. Philadelphia, PA: Life Course Outcomes Research Program, A.J. Drexel Autism Institute, Drexel University.

Simons, S. (2019, April 1). Navigating the ‘services cliff’: What happens when adults with special needs turn 21 [Radio broadcast]. WAMU. https://wamu.org/story/19/04/01/navigating-the-services-cliff-what-happens-when-adults-with-special-needs-turn-21/

Special Olympics. (n.d.) What is intellectual disability? https://www.specialolympics.org/about/intellectual-disabilities/what-is-intellectual-disability