Someone who is directing their own care is making all health-related decisions for themselves. In the United States, when an individual turns 18 they legally have control of their own care. Directing one’s own care may involve any number of medical related actions including calling a doctor, arranging doctor appointments, managing medication, hiring personal care assistants, and much more.
What Does it Mean to Direct Your Own Healthcare?
Having control of these aspects of care can lead to an individual having a greater sense of independence and control over their life.
It’s important that individuals with cerebral palsy begin make this transition over time and well before their 18th birthday, starting as early as 14. Planning several years in advance leaves plenty of time to identify suitable providers and allows the individual to adjust to navigating the diversity of new responsibilities on the horizon.
How Do You go About Facilitating This Healthcare Transition?
The transition to directing one’s own care can be empowering but also difficult. Many hospitals do not have a transition policy or program, making the leap from adolescent to adult care feel confusing and daunting. There also tends to be fewer medical specialists available for adults when it comes to lifelong conditions like cerebral palsy. However, there are many excellent online resources available for families to help prepare their child for this transition. Starting early will help to relieve stress.
When an individual is in their early teens, they often begin to understand the complexity of what is involved in addressing and managing their medical needs. With the guidance of family members and their primary care doctors, they can start planning on how to direct their own care in the future and take steps over time to lead them in this direction.
There are many questions that need to be asked as someone approaches this stage:
- Will they be staying with a family practice provider or will they be finding a new doctor?
- Will they need to find an adult specialist?
- Will the individual’s insurance be changing?
Asking a current health care provider these questions can provide direction of where to go next. An individual might decide to make phone calls to potential doctors asking if they are accepting new patients and what insurances they accept.
Some individuals may naturally become more involved in asking detailed questions and taking on increasing responsibility for their medical care, while others may need more encouragement and structured guidance. For example, an individual may be guided to manage their own medicines or work with their care team to determine what characteristics are important for them to look for in their adult healthcare providers. Parents may also encourage them to call and arrange their own appointments and talk directly to the doctor about specific concerns they have regarding their health. During this transition it can be helpful to have another individual help with decision making and at times remain present during medical visits (maybe at least part of them). They can provide another perspective and some insight into making decisions related to one’s health, while slowly allowing the person to assume greater responsibility during medical visits.
For many, assuming control of their own healthcare can lead to a greater sense of independence and a deeper knowledge of the things they need to live the healthiest and happiest life possible. Taking time to create a plan for managing this period of transition can reduce stress and ease the transition to independence for the child on the cusp of adulthood.
How to go About Hiring and Managing Personal Care Assistants (PCAs)?
For many individuals with cerebral palsy and similar conditions, parents or guardians provided daily help and care when they were young. If an individual requires continued help with their daily life as they grow older, they might consider hiring a personal care assistant to help them with their daily activities. This can be done through a care agency or by hiring personal care directly. It is important to note that if the hiring of a PCA is not done through an agency there are additional responsibilities that come with being an employer as well as a client. As an employer, an individual is responsible for managing time sheets, payroll, and much more.
Resources for Healthcare Transitions
There are many resources available to make transition to managing one’s own care easier. In addition to talking with healthcare professionals and starting early, the following resources can also help individuals create a plan to transition to directing their own care:
- A good starting place, has interactive quizzes and answers frequently asked questions by adults and teens about transition: https://www.gottransition.org/
- TransitionQ from CanChild (Check out the mobile app!)
- A general guide to Supported Decision Making: https://supporteddecisions.org/getting-started-with-supported-decision-making/
- Self Directed Care Roles and responsibilities when hiring a PCA: https://www.mycil.org/self-directed-care-a-complete-guide-to-roles/
- Article by the Canadian Journal of Neurological Sciences: https://www.researchgate.net/publication
For more information, download our free cerebral palsy tool kit.
- Oskoui, M. (2012, January). Growing Up With Cerebral Palsy: Contemporary Challenges of Healthcare Transition [PDF]. Bethesda: PubMed.
- Supported Decision-Making. (2021, May 24). Getting started with supported decision-making. Retrieved June 14, 2021, from https://supporteddecisions.org/getting-started-with-supported-decision-making/
- ACES$ Clients, Learn. (2019, January 30). Self-Directed care: A Complete guide to roles. Retrieved June 14, 2021, from https://www.mycil.org/self-directed-care-a-complete-guide-to-roles/