Successfully navigating the transition from childhood to adolescence and adult life requires careful and ongoing planning and support. While individuals with Duchenne & Becker should be included in their health care and future planning beginning at an early age, focused transition planning should begin around the age of 13 or 14, as developmentally appropriate.
This planning should be centered around the goals of the individual with Duchenne or Becker and include a comprehensive team of community providers including educators, social workers, health care team members, and family.
Topics that should be addressed within the transition plan should include transitions in health and health care, goals for education and employment, access to the community (navigating public transportation or driving), facilitating an active social life and relationships, and supporting housing goals.
It’s important to remember that transition is not a one time event, but rather a multi-step process that spans health care and daily life. This may or may not include transfer of care to an adult health system, depending on where you receive your care.
Important Transition Planning Facts to Remember:
Beginning in early childhood, providers, educators, and parents should include the young person in their healthcare and future planning. Youth and their families should be made aware of plans for healthcare transition by age 12, with initiation of transition discussions and planning by age 13 to 14. When the person with Duchenne or Becker begins to show an interest and ability to self-advocate in a variety of settings about care and needs, then it is appropriate to move from family-centered to patient-centered interactions.
As adolescence approaches, teens will start to ask questions about their futures — What job would I like to have as an adult? How will I contribute to society? What education or training will I need to do that job and make those contributions? Where will I live? What assistance will I need to live independently (if that is what I choose to do)? Do I want to date/get married/have children? Where will I receive my medical care?
These are questions that all teens face, but with Duchenne or Becker, these goals require support, resource navigation, and planning, which should start earlier, rather than later.
Got Transition® is the national resource center on health care transition (HCT). Parents, caregivers and individuals with Duchenne & Becker can use this resource to access tools & support during the transition process.
Learn more about Got Transition® resources here.
Every person with Duchenne or Becker should expect to achieve their personal goals as a member of society. Developing a formal plan, with each step outlined, will make this possible. PPMD and the Centers for Disease Control and Prevention (CDC) published a supplement article named A Transition Toolkit for Duchenne muscular dystrophy in Pediatrics that outlines the process for transitioning to adulthood.
The Transition Toolkit for Duchenne muscular dystrophy includes a Transition Checklist that may be helpful. This checklist includes questions that adolescents and young adults can answer, such as what they wish to accomplish and what supports they may need to accomplish their educational and vocational goals.
Download the Transition ChecklistIn many instances, a care coordinator and/or social worker can serve as a central resource for questions about managing health and caregiving related to Duchenne. Care coordinators facilitate communication between providers, family, and community and can help anticipate needs and connect individuals to resources to meet those needs. Often, they can assist with navigating benefits, and acquiring equipment and resources. Without care coordination and social work involvement, care can become fragmented, recommendations neglected, and needs unmet.
Transition planning should include a plan for continuity of care with pediatric providers until adult care is established. Care models vary. Some people with Duchenne or Becker will be able to continue to receive medical care from their pediatric neuromuscular teams throughout adulthood. Others may require a change in certain providers within the same institution, and others may be required to transfer from a pediatric to an adult care center. This depends on the institution. All models require an intentional transitional care environment and a focused emphasis on resources needed to support the individual with Duchenne’s healthcare goals and personal goals for the future. The transition coordinator should help facilitate the adolescent’s self-management of healthcare, facilitate referrals to appropriate adult providers, and ensure transfer of medical records.
Education and vocation planning following high school takes detailed attention. School personnel, vocation counseling services, and formal transition clinics may offer additional guidance. Not all people with Duchenne & Becker seek additional education beyond high school. Future planning should reflect the values, strengths, and talents of the individual.
As teens and young adults with Duchenne & Becker age into adulthood, they should be encouraged to explore desired levels of independent living. Not all teens and young adults will want to live independent of their parents and families but, if they do, resources and support will be needed to facilitate this level of independence. Hired personal care attendants can provide assistance with hygiene, meals, transfers, as well as non-skilled healthcare interventions. Home care agencies can often provide licensed services for more advanced healthcare needs. The neuromuscular team, particularly social workers, should work with the family to learn details of their private insurance, state or regional programs, and national social support systems that will help individuals reach their goals of independence.
As a result of the complex and often fragmented nature of disability benefits systems, adults with Duchenne & Becker need a financial understanding that is above and beyond that required of those without disabilities. The neuromuscular care team, particularly social workers, must encourage families of teens and young adults to learn details of any private insurance, state or regional programs, and national social support systems.
Considerations when developing a plan for independent living:
Without appropriate transportation, the individual living with Duchenne or Becker will have a difficult time achieving independence for employment and education, as well as independently participating in social activities, dating, etc. Providers should discuss options for safe transportation including:
Social connections are critically important for making sure that you are living a healthy, productive and happy life. Opportunities for personal contact and social engagement happen less naturally, and may require more effort to foster social connections. Many social groups exist for teens and adults with Duchenne & Becker — PPMD’s PAAC, school counselors, your neuromuscular team, and other advocacy groups can help you to find these groups in your area.
Dating, intimacy, and sexuality are high-priority topics among all teens and young adults, with and without Duchenne. At-home discussions regarding relationships, dating, sexual orientation, and marriage should be encouraged, along with conversations about troubleshooting barriers to developing social relationships and participating in social events. During routine neuromuscular team visits, young people with Duchenne should have a comfortable forum to raise questions about their ability to masturbate, have sex with a partner, parent children, or to address other intimate topics. When appropriate, guidance from a marriage or relationship therapist may be sought.
