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Youth and Family Perspectives on Transition

The Division of Services for Children With Special Health Care Needs, MCHB, has established six indicators to Measuring Success for Children and Youth with Special Health Needs and their families. These outcomes/performance measures are articulated in the Division's goals for Healthy People 2010. Measuring Success addresses two critical issues for families and youth with special health care needs or disabilities who are transitioning to adult health care.

  • All youth with special health care needs will receive the services necessary to make appropriate transitions to all aspects of adult life, including adult health care, work and independence.
  • All families of children with special health care needs will have adequate private and/or public insurance to pay for the services they need.

As youth with special health needs begin to transition to the next phase in their lives, they must contend with their independence. This includes employment, housing, personal finances, recreation and many other areas we all face as adults. Planning for the future needs of a young person is an arduous process. Some areas of transition are addressed by school systems through the requirements of the Individuals With Disabilities Education Act (P.L. 105-17). There is however, no systematic approach required by legislation that governs transition to adult health care and insurance coverage for youth with special health needs or disabilities.

Transitioning to adult health care can be a frightening and sometimes overwhelming process for both parents and youth. This article is based on interviews with parents and young adults with special health needs or disabilities. It provides perspectives on transitioning from pediatric/adolescent care to adult health care systems.

Scarcity of knowledgeable health care providers

First and foremost, parents, family members and young adults with special health needs or disabilities expressed fear in changing from pediatric/adolescent care to adult care because they were unable to identify health care practitioners who were familiar with their unique needs. One young person described a particular concern. "My pediatrician and I had a good rapport about my health needs. When I had shunt problems at age twenty, she was able to immediately identify the issue just by looking into my eyes and assessing a few other symptoms. I don't know if that will be possible with my new doctor because she doesn't know me that well and I'm her first patient with Spina Bifida." This is typical of the kinds of concerns also expressed by parents on behalf of their children.

Developing rapport, trust and confidence with adult health care providers

Developing rapport, trust and confidence with a new health care provider was a concern voiced by all young people interviewed. They were concerned about how long it would take to develop a relationship and how receptive the health care provider would be to their needs.

Adapting to new service delivery approaches

Parents were concerned that the manner in which services would be delivered would be quite different in many respects. Pediatric/adolescent care actively involves the parent and/or other family members. This is not typically the case with adult care, which tends to focus only on the patients with the assumption that they can manage their health care independently.

Changes in health care coverage & insurance

Parents expressed concerns about the impact of changes in health care coverage for young adults with chronic illness or disabilities. Under some insurance plans a variety of conditions must be met in order to maintain coverage. In some cases, families found it necessary to access Medicaid because their children no longer met the age or dependent status criteria of their private insurance. One parent shared an experience in which transition took place very abruptly for her son with special health needs. The insurer's policy limited the health care practitioner's ability to serve patients to those 21 years and younger, although the practitioner and family thought the ceiling was 25 years. This resulted in an interruption of care for her son. Additionally, because her son had complex needs, there was inadequate time to prepare with a new health care practitioner.

Things To Do To Prepare for Transition

What parents/families can do…

As parents begin the process of transition their young adults from pediatric/adolescent care to adult health care, these considerations may be helpful in supporting your child through this process.

  1. Find out the policies regarding the age and service policy limits for your child's pediatric/adolescent practice.
  2. Find out your health care insurer's policy regarding the age limit of services under pediatric/adolescent care.
  3. Begin discussing transition at 14-15 years of age with both your child and the health care provider.
  4. Foster the development of an independent relationship between your child and his/her health care practitioner. This provides a foundation for developing future relationships with adult health care providers.
  5. Request that your pediatric/adolescent health care practitioner recommend an adult provider who is sensitive and knowledgeable of special health care needs and disabilities.
  6. Find out how your insurer handles referrals and consultations for transition to adult health care.
  7. Explore your state's legal requirements about the need for limited guardianship based on your child's unique needs.

What youth can do…

There are a number of things you may consider as a young person preparing for or transitioning to adult health care.

  1. Make a list of questions to ask your prospective health care practitioner such as:
    • Have you ever had a patient with special health care needs?
    • Are you willing to spend time with my pediatrician/adolescent health care provider to gain an understanding of my unique health issues?
    • Do office visits include a time for me to talk to you about my concerns?
    • Can I talk with you directly if I call you on the phone? Do you respond to patient e-mail inquiries?
  2. Find out how your health insurance coverage works.
  3. Keep a notebook or journal of current medications, specialists and other information that is relevant to your care.
  4. Remember that your parents and family members are there to support you, and inform them when issues are too difficult for you to handle alone.

What health care practitioners can do…

As a health care provider who is currently or is preparing to serve youth with special health care needs, consider the following suggestions to help make for a smooth transition process.

  1. Use strategies that involve family for those youth who need and prefer this approach to health care.
    Many young people with special health needs or disabilities have received health care within the context of family. Mothers, fathers or siblings have often been a companion, supporter, advocate or facilitator in their care. They have a tremendous investment in the health and well being their family member with special health needs. Careful consideration should be given to how to involve families, in a meaningful manner, while simultaneously maintaining the highest level of independence and privacy for the youth.

  2. Use culturally and linguistically competent practices.
    The concept of family, how family is defined and who comprises family is deeply rooted in culture. Perceptions of health, well being, illness and disability are also culturally based. Understanding the implications of these values and beliefs systems will enable practitioners to more effectively serve young adults and their families. Additionally, given how diverse the U.S. society is, health care providers also should consider the need for language access and linguistic competence in their practice.

  3. Use a team approach to facilitate the transition process.
    The transition process is facilitated by collaborating with the youth, family members, referring pediatric/adolescent health practitioner and other specialists to gather helpful information. In addition to health care, individuals with special health needs or disabilities often require services and supports from an array of other systems such as social services, vocational rehabilitation and mental health. In some instances, physicians are required to authorize services. Your familiarity with these systems can be of benefit to the young adult and his/her family.

  4. Access resources that may help with both transition and delivery of health care to young adults with special health needs.
    While there is no Federal mandate that insures transition to adult health care systems, there are resources that can help with this process. One example is the Healthy and Ready to Work demonstration grants funded by MCHB in many states. For more information, see http://www.hrtw.org/

November, 2001