Improving transition to adulthood for adolescents with intellectual and developmental disabilities

Transitions as a developmental issue.

Transitions often represent changes in expectations regarding an individual’s cognitive and adaptive functioning and the social roles they undertake as they age. This is why people with IDD and their families typically identify times of transition as among the most challenging times of life.⁴

Physicians working with youth with IDD (eg, family physicians, pediatricians, developmental pediatricians) should draw on frameworks that are informed by developmental psychology as guides to thinking about appropriate health care interventions.^5–9 Child psychologists such as Piaget, Erikson, and Gesell contributed to understanding development as an evolutionary process that occurs over a predictable sequence of stages, and each stage is associated with particular skills, roles, and competencies. Their work fostered the creation of developmental scales and checklists from which children could be measured and compared in relation to physical and cognitive norms at standardized stages.^10,11

Key milestones of “successful” adult life generally include independent living, employment, and interpersonal and intimate relationships. Preparing youth for achieving developmental tasks and meeting expectations of certain future contexts and social roles will ease their transition to adult life. For example, adults are expected to develop independence and self-reliance in fulfilling roles and responsibilities associated with managing their daily life and employment. By contrast, it is acceptable for children to be dependent on their parents until they develop the skills and competencies they need to fulfil these roles and responsibilities by themselves.

When providing care for people with IDD, a challenge for family physicians is to understand how markers of typical development in the general population might not apply to people with IDD. Research shows that people with IDD experience considerable physical and mental health problems during life-stage and service transitions, which are often associated with changes to familiar environments, social circles, and the nature and level of supports.^12–14 Many people with IDD, for example, stay in publicly funded school until they are about 21 years of age. But they must transfer from child to adult health services at 18 years of age when they also become eligible for social services in the adult developmental sector. Family physicians need to think about the emotional, behavioural, social, and spiritual challenges that accompany these changes for people with IDD, as they play an important role in preventing and addressing these associated health and social problems.

When an adolescent with IDD is in transition to adult life, his or her family will also need to adjust and adapt to the needs of the person with IDD. While times of transition present opportunities and risks to the quality of life of people with IDD, similar opportunities and risks arise for families with 1 or more members with IDD. The success of an adolescent with IDD’s transition to adult life will have a considerable effect on the well-being of his or her family, including the health of family members, often mothers, who take on caregiving roles. Family caregivers also experience difficult dilemmas and decisions in continuing to provide high levels of care to adult children, but also regarding “letting go” of their caregiving roles and responsibilities as they also age.^15,16 Family physicians can play an important role in supporting families of youth with IDD who are in transition to adult life, particularly family caregivers.¹⁷

Transitions as a systems issue.

In addition to addressing developmental issues during transitions to adult life for youth with IDD and their families, a related task is to address the continuity and appropriateness of the systems of support for them. One role for family physicians is to engage and work proactively with colleagues in health care and other systems (eg, education, social supports, leisure and recreation, legal) to identify needs early, before the transition, and to designate responsibilities for coordinating, navigating, and integrating health care.

Many authors recommend that planning for the transition to adult life should begin as early as age 12 to 16 years.^18–20 This allows sufficient time to develop a transition plan and to implement aspects of this plan, such as the development of relevant skills for adulthood. Such planning is best done during the relatively stable phase of adolescent school life. The transition to adult life can be regarded as successful to the extent that the individual with IDD and his or her family’s wishes and hopes for the adult phase of life that have been incorporated into the transition plan are being realized in a manner that they envisioned.

As shown in Figure 1, Sarah’s health care transition plan (adapted from the Developmental Disabilities Primary Care Initiative)³ is comprehensive in scope and identifies skills and supports that Sarah and her family will need during the early adult phase of life. It is mandatory in schools for people with IDD in a special education program to create a transition plan, which family physicians can refer to as a starting point. In addition to addressing the health care needs of the person with IDD and his or her family, transition plans also address vocational and social issues such as inclusive postsecondary education, supported employment, supported living, and social-leisure-community engagement.²¹ Such aspects of a transition plan are outlined in detail in a transition readiness tool,^3,18 which will not be described here but which is available online (surreyplace.ca/ddprimarycare/tools/general-health/transitions).³ What is important to highlight here, is the role family physicians can play in developing, implementing, reviewing, and updating transition plans in accord with the principles of family medicine.¹⁸

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Figure 1.

Sarah’s health care transition plan

AAP—American Academy of Pediatrics, ACFP—American Academy of Family Physicians, ACOP—American College of Physicians, DD—developmental disabilities, G-J— gastrojejunal, OT—occupational therapist, SLP—speech-language pathologist.

Adapted from the Developmental Disabilities Primary Care Initiative.³

Role of family physicians.

The various roles that family physicians and other primary care providers can and should play in supporting people with IDD and their families during the transition to adult life can be framed using the 4 principles of family medicine.²²

First, the relationship between the family physician and the person with IDD and his or her family is central to health care. The family physician should ensure that the person with IDD and his or her family participate in the planning and implementing of the transition plan. This might entail encouraging and supporting the young person with IDD in decision making. In Sarah’s case, her family physician will need to distinguish between her expressive and receptive communication skills, and employ specific supports to assist with her communication. Sarah’s family physician might also consider each family member’s life stage and provide supportive counseling to each person regarding his or her relationship with Sarah and the various roles he or she is attempting to manage as a family member or caregiver (eg, benefits and risks of a parent also assuming the role of an educator or advocate). In developing and implementing plans, both the well-being of Sarah and that of her family should be kept in mind.

Second, the family physician, as a skilled clinician, should be able to identify health and developmental needs of people with IDD in transition to adult life and those of their families—what involves ongoing care and what can be anticipated to change, requiring preventive care or additional health care interventions and supports.

Third, the family physician, as a resource to a defined population (in this case, persons with IDD in transition to adult life and their families), should be aware of best practices for successful transitions and the supports that adolescents with IDD and their families might need as they face the challenges of changing roles and responsibilities, and of assuming others.^5,6,8,18,23

Fourth, the family physician, as a community-based practitioner, should be an advocate for a comprehensive case management approach to developing and implementing a successful transition plan. In addition to addressing health care needs, such a plan needs to engage the range of crucial community agencies and services, such as education, college and university, employment, housing, and funding supports. While it is typically beyond the scope of the family physician to lead such planning, he or she can play a role in ensuring that such planning is taking place, that someone, perhaps a member of the family health team, has been identified to take responsibility for implementing aspects of the health plan, and that progress regarding this plan is reviewed and updated on a regular basis, such as annually.