Health care transition is a complex process for patients with neurodevelopmental and intellectual disabilities, but it is only one of the transitions that young people face as they reach legal majority. Managing it successfully requires collaboration among patients, their families, and a variety of formal providers, but it may also include informal community advocates or supports.
Medical care - This requires active collaboration among primary health care providers and medical specialists.
Benefits support - At age 18, patients may make a transition to new programs that provide medical insurance and support for basic living expenses. Eligibility specialists and care coordinators may help with this.
Educational and/or occupational support - Young adults may remain in special education programs, go on to college, or wish to get a job.
Housing - Remain in the family home, seek specialized group housing, learn to live independently or with support—all of these and more are options.
Habilitation/rehabilitation - This might include ongoing speech, physical, or occupational therapy.
Usually, one health care provider serves as a kind of transition team leader. This person is often the primary care provider, someone else within the patient’s medical home, or the physician who knows the patient and his or her condition best. For example, the team leader for a patient with intellectual disability and well-controlled epilepsy might be the person's general pediatrician, while the team leader for a patient with a rare neurometabolic condition might be the neurologist. The team leader helps patients develop overarching transition plans, coordinates care and communication among providers, and serves as the point person that patients and families can contact as they move through the process. However, every person involved in the transition process has work to do. Each health care provider should contribute to transition planning. Providers who aren’t serving as team leader should still develop (or utilize) specialty-specific transition policies in their own practices and individual transition plans for each patient.
Here are topics all young people must consider as they make the transition to adulthood, but which may require additional thought and explanation as they apply to teens with I/DD.
Puberty, sexuality, and reproduction - Sexual growth and development are part of normal adolescence. Adolescents need comprehensive, developmentally appropriate education about puberty, sexuality, and healthy relationships to make informed decisions. Youth with special health care needs, especially those with intellectual and developmental disabilities, often do not receive sufficient education about these topics. This leaves them vulnerable to abuse and exploitation and puts them at greater risk of sexually transmitted infections and unwanted or mistimed pregnancies. Including this information in transition planning is of the utmost importance. Primary care providers may decide to talk about puberty and sexuality in general terms. Specialty providers can reinforce this information and provide condition-specific information as well (e.g., a neurologist should plan to discuss the importance of using contraceptives with a patient who is taking certain anti-seizure medications).
Alcohol and substance use - As with any adolescent, there should be ongoing conversation about the risks to health of using legal substances - alcohol and tobacco as well as illicit substances.
Driving - This may not be an issue for some young people with I/DD, but for others, it may be part of the usual coming of age. What restrictions would your patient have in driving safely?
Middle school, high school, and beyond - Many patients with I/DD have special accommodations in school, either an Individualized Education Plan (IEP) or 504 Plan. Students are eligible to receive special education services until they are 22 years old. Some patients who are receiving these services may choose to stay in school until then, while others may graduate or receive a certificate at an earlier age. Some patients may plan to go to college or community college. You can then incorporate student health (and disability services at their college/university) into your transition planning.
Employment - Some patients may plan to join the workforce. Several disability organizations, for example, the ARC of North Carolina and the Autism Society of North Carolina, as well as the NC Department of Health and Human Services, Vocational Rehabilitation Division, have supported employment and job placement programs.
Housing - Patients may live in any of a variety of living environments during their young adulthood. Inquiring about the patient’s future plans for housing can give you some insight about how responsible they’ll need to be for managing their own health care.
Medical Decision Making - It is very important to find out about your patient’s plans for medical decision-making. Some patients with neurodevelopmental and intellectual disabilities may be completely independent as young adults and able to make decisions about their health care on their own. Others may need a bit of support. It’s important to know who will be responsible for decision-making for practical purposes. You should plan to convey this information to adult providers as well.
Genetic Counseling - In addition to talking about reproductive health, providers should make sure to discuss the utility of genetic counseling with patients and parents/caregivers. You may already have had this discussion with patients with neurogenetic conditions. Make sure to revisit the topic when patients get older as well, especially if they are or plan to be sexually active or if they plan to have children themselves.
Click below for a handout of suggestions for how you would manage planning visits from ages 12 through 18+:
Spend one-on-one time with your adolescent clients. It's important for adolescents who are able to communicate to spend one-on-one time with their care provider.
- It allows them to take more responsibility for their own health care.
- It allows them to talk about sensitive subjects without having parents/caregivers present.
- It allows you to find out more about their personal health goals.
Remember that patients with intellectual disability shouldn’t be excluded from the transition planning process. Their goals and ideas should be included in the plan itself. Many patients with I/DD can develop health-management skills.
Guardianship is a legal relationship in which one individual is given the authority by the court to make decisions on behalf of another individual who is not able to make and/or communicate decisions on his or her own. Some patients with intellectual disabilities need guardianship but others don't.
There are five types of guardianship. Your patient may only need certain kinds of support (or may only need it temporarily). If it’s needed, guardianship should be tailored to fit an individual’s specific needs.
- Person, used when an individual needs help making decisions about their care and custody
- Estate, used when an individual needs help making decisions about property and business affairs
- General, covers both the individual and their estate
- Limited, only applied in areas where an individual needs help
- Interim, temporary
There are, however, a number of alternatives to guardianship that may provide the support your patients need. Other modules in this website will discuss them in greater detail, but here's a list. Additional information for North Carolina is available through the Rethinking Guardianship website: http://rethinkingguardianshipnc.org/home .
- Informal: family/friend/ community support
- Supported decision making
- Foster Care 18-21
- Special bank accounts
- Living trusts
- Special needs trusts
- Representative payees
- Power of attorney
- Health care power of attorney
- Advance directives
- Living wills
Drawn from the experiences of real patients, their stories illustrate what can happen when care transitions are not planned and when they are.