Transition of Care Through Adulthood

Successfully navigating the transition from childhood to adolescence and adult life requires careful and ongoing planning and support. While individuals with Duchenne 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 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.

Important Transition Planning Facts to Remember:

  1. Successful transition to a desired level of independence is possible with careful planning and support
  2. The care coordinator and/or social workers are often the care team members responsible for facilitating transition planning
  3. Teens and young adults with Duchenne should discuss their long-term care goals with their care team and family at least once a year, beginning at age 13 or 14
  4. Educational and vocational interests should be discussed and include assessment of any potential barriers in the school or workplace
  5. Teens and young adults with Duchenne should be encouraged to explore options for independent living, just as their peers

Timing of Transition Planning

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 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.

Why Transition Planning is Important

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, these goals require support, resource navigation, and planning, which should start earlier, rather than later.

What should the plan include?

  • A list of future goals prioritized by the individual with Duchenne.
  • Goals should address the following four areas: employment/education, independent living, health, and social inclusion – and reflect the needs and values of the individual with Duchenne
  • Identification of the resources and services that will need in order to achieve those goals, who will provide them, and how they will be financed
  • Financial planning should include a long term financial plan; in the U.S., establishment of an ABLE Account and/or a Special Needs Trust should be explored

Care Coordination

In 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.

Medical Care

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 will be able to continue to receive medical care from their pediatric neuromuscular teams through adulthood, others receive medical care from providers who provide care across the continuum but may require a change in providers within that same institution, and others may be required to transition from a pediatric to an adult care team. 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.

  • From an early age, children and teens with Duchenne should be encouraged to participate in discussions about their health and eventually have alone time with providers.
  • When a child 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 care interactions.
  • Sensitive topics are more common in teen and young adult years and may include discomfort, anxiety, coping, and loss. These areas should be assessed and addressed with professionals. Discussing these topics out in the open can result in additional medical or supportive services. For example, medicines or counseling to relieve anxiety or palliative care services for emotional or spiritual support may be helpful.
  • It is important for the teen and young adult to voice personal values and preferences about health. Parents and providers can help the young person in advance care planning as they consider critical medical care choices into adult life.
  • Providers can work to educate young adults and their families about anticipated changes associated with Duchenne so they can be proactive about their health and can prevent some complications.
  • Some healthcare providers will agree to continue to treat adults, even though their hospital does not endorse this policy. If this is your case, you will need to make sure that the hospital where you are receiving care will allow you to be seen there in cases of an emergency or needed surgery. If not, it would be wise for you to also find providers in a hospital that will admit you for an emergency or surgery.
  • If you are traveling distances from your home for neuromuscular care, it would be wise to also find cardiology, neuromuscular and pulmonary providers (in addition to your primary care provider) close to your home. Emergencies generally happen close to home, and it will be important to have local providers who know you, are able to guide your care, and who have a relationship with the neuromuscular team that you travel to see.

Education, Employment, and Pursuit of Vocations

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 seek additional education beyond high school.  Future planning should reflect the values, strengths, and talents of the individual with Duchenne.

  • Education planning meetings should occur at least annually starting around age 13 and include assessment of personal strength and interests with a positive outlook for the future with focus on the student’s needs and goals.
  • Establishing a plan that balances medical needs and a time for rest with practical issues involving school attendance and academic standards/work demands is important.
  • It is important to identify resources for access of necessary equipment and technology as well as transportation.
  • Empowering the individual to lead a productive, rewarding and meaningful life, in whatever capacity possible, is critical to the mental health of the person living with Duchenne and their family.

Housing and Assistance with Activities of Daily Living

As teens and young adults with Duchenne 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 need a financial understanding that is above and beyond that required of those without disabilities. The Duchenne 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:

  • Residential setting considerations (family home, campus during academic studies, group housing or organized facility, a home or apartment with or without a roommate)
  • Home modifications and accommodations for accessibility (consult with experts, understand laws and rights, financial resources, assistive technology options)
  • Assistance with personal care and activities of daily living (hired personal care attendants vs. family care providers, availability of providers, funding resources, management & training of care providers)
  • Proximity to public transportation, ease of independently navigating the community and commuting to school, work, and friends

Transportation

Without appropriate transportation, the individual living with Duchenne 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:

  • Independent driving with vehicle modifications
  • Modifications to family-owned vehicles
  • Public transportation 

Personal Relationships

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  — PPMD, 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.