Braeden Friedman; Katharine Stratigos, MD; Debra Rosenblum, MD
Editors’ Note: This chapter focuses on young adults engaged with multiple service systems. However, many prescribing considerations apply to the transitional needs of anyone with IDD as they move into adult to children’s mental health services regardless of their global service needs.
Overview
This chapter focuses on supporting youth with IDD who are actively engaged in children’s mental health and related services in and outside of the school setting, as they transition to adult services. It is crucial for prescribers to understand these support systems, especially when there is a lack of social workers or additional resources to guide patients and families. Prescribers must extend their role beyond medication management to actively support patients and their families in developing a comprehensive biopsychosocial treatment plan.
For youth with IDD and their families, the transition to young adulthood is complex and creates a major re-alignment in expectations, roles, and responsibilities.1 This transition can be the point at which the patient’s path most deviates from same age peers and involves many potential changes including engagement with IDD services, educational settings, medical care, social relationships, living circumstances, and daytime programming.1,2
Impact on Mental Health
For transitional youth, there is an increased risk of poor mental health due to the loss of routine, diminished social support, and increased social isolation, which can contribute to anxiety, depression, and feelings of grief for patients.1,3 Families often experience stress, grief, isolation, and uncertainty during this transition.4
As discussed elsewhere in these guidelines, there is a greater prevalence of some psychiatric illnesses as well as an increased incidence of physical, sexual, and emotional trauma for people with IDD when compared to the general population. The transition from pediatric to adult medical and behavioral health providers can create a care gap that can lead to emergency room visits and possibly unnecessary inpatient psychiatric admissions due to lack of access to appropriate services and care.
Role of the Prescriber
Prescribers play an important role in supporting patients and their families during this transition by addressing mental health needs, facilitating planning, and advocating for person- and family-centered care. While some barriers to transition are structural—such as limited availability of adult IDD programs or nonequivalent adult services—there are also critical psychological factors that mental health providers can actively address. Assumptions and biases about people with disabilities often interfere with effective planning. For example, wrongly assuming limitations in cognitive or communication abilities, leading people to underestimate a person’s capacity to participate meaningfully in their own transition process. Prescribers can educate other providers and prescribers, promote inclusive practices, and align treatment plans with the person’s goals, strengths, and developmental needs. Table 1 details key considerations for transitional youth with IDD including categories/domains, the prescriber’s role, and clinical implications.
Table 1: Considerations for the Transition from Youth to Adult Services for People with IDD
| Category | Consideration | Prescriber's Role | Clinical Implications |
|---|---|---|---|
| Transition Planning Timeline | Initiate transition planning early (e.g., by 14-16) | Encourage starting this process early | Enhances service continuity, prevents possible service gaps |
| Cognitive and Communication Profile | Up to date cognitive profile, adaptive functioning, and communication needs | Tailor communication approach, utilize plain language and visual aids when needed | Informs consent process and shared decision making; having up to date evaluation ensures having necessary documentation for eligibility at developmental agencies |
| Developmental Agencies | Each state has developmental agencies that provide supports and services | Know which developmental agencies to refer patients based on where they live | Provides or contracts to provide individualized supports and services for people with IDD. |
| Coordination of Medical or Psychiatric Care | Identify new adult providers (psychiatry, PCP, therapy, case management, etc.) | Facilitate handoffs, send summaries, and history. Ensure accurate updated diagnoses are documented and reconcile medications | Minimize disruptions in medical or psychiatric care |
| Capacity and Consent | Assess decision making capacity and guardianship status | Determine capacity for informed consent; involve legal guardians when needed | Ensure ethical and legal care is provided |
| Behavioral and Functional Needs | Evaluate current behavioral supports and functional independence | Coordinate with other providers (e.g., behaviorists, occupational therapists, physical therapists, and support staff) | Promote independence and stability |
| Social Determinants of Health | Consider housing, employment, education, financial and social support | Screen for social needs; refer to appropriate community resources | Addresses whole-person care |
| Self-advocacy and Autonomy | Foster patient involvement in care decisions and advocacy skill building | Encourage patient voice in treatment plans; provide opportunities for independent health management | Builds long term self-efficacy, improves adherence and outcomes |
| Crisis Planning | Prepare for potential psychiatric or behavioral crisis | Create crisis plans, teach coping skills to patients and family; If START is in your state, consider a referral to START services | Reduce emergency department and inpatient psychiatric admissions |
| Insurance | Ensure continuity of insurance (e.g., Medicaid, SSI, waiver programs) | Educate families about different options; connect them to a social worker or care manager | Prevents loss of access to medical and psychiatric care |
Begin Transition Planning Early
An early, ongoing transition plan is essential for a successful adjustment and should begin by age 14. Thoughtful, coordinated planning requires communication, strong advocacy, and a person-centered approach—recognizing that one size does not fit all. A school-based transition model is critical to effectively prepare for adulthood and should be revisited at regular intervals throughout the school years to ensure it remains responsive to the student’s evolving needs.
Include the Person with IDD
Having the person with IDD involved in their own transition planning has been found to improve outcomes.3,5 Many people with IDD are able to express their preferences when given the right communication support. People with IDD want their opinions to be respected and to be involved in making choices about their lives.3 Many young adults with IDD yearn for the same self-determination as their neurotypical peers-such as pursuing work or college, enjoying unsupervised recreation, dating, having a place of their own, and possibly starting a family.
Support Families in the Transition Process
Families may struggle to accept the transition to adulthood for their child and the right to make their own choices, as they may see them as a “dependent” child and not as a young adult who may have differing opinions about next steps.6 This tension often becomes clear as youth learn to self-advocate and express their own goals and aspirations.2 This underscores the importance of truly understanding what the person really wants. Families may be focused on keeping the person “safe and busy” sometimes at the expense of pursuing what would be meaningful for that specific person.
Additional Resources Regarding Transition to Adulthood
- Got Transition
- Family Voices
- The Arc
- The Center for Parent Information and Resources
- Self-Advocacy Resource and Technical Assistance Center
- RespectAbility
- Supported Decision-Making Center
- The Arc's Center for Future Planning
- The IDD Toolkit
- Healthcare.gov
References
- Dimov S, Shields M, Dickinson H, Kavanagh AM, White B, Sutherland G. Mental health and postschool transitions for young people with intellectual and developmental disabilities (IDD): a scoping review. J Child Adolesc Ment Health. Published online 2024:130. doi:10.2989/172805 83.2024.2424198
- Ally S, Boyd K, Abells D, Amaria K, Hamdani Y, Loh A, et al. Improving transition to adulthood for adolescents with intellectual and developmental disabilities: proactive developmental and systems perspective. Can Fam Physician Med Famille Canad. 2018;64(suppl 2): S37S43.
- Marquis S, Lunsky Y, McGrail KM, Baumbusch J. Population level mental health diagnoses for youth with intellectual/developmental disabilities compared to youth without intellectual/developmental disabilities. Res Child Adolesc Psychopathol. 2024;52(7):11471156.
- Franklin MS, Beyer LN, Brotkin SM, Maslow GR, Pollock MD, Docherty SL. Health care transition for adolescent and young adults with intellectual disability: views from the parents. J Pediatr Nurs. 2019; 47:148158. doi: 10.1016/j.pedn.2019.05.008
- McKay S. A new approach to transition planning for transitional aged youth with intellectual and developmental disabilities. J Dev Disabil. 2019; (issue unknown):pages unknown.
- Best M, Burke M, Rossetti Z, et al. Perspectives of transition aged youth with intellectual and/or developmental disabilities about self-advocacy and civic engagement. J Dev Phys Disabil. 2024. doi:10.1007/s10882024099851
