Cerebral Palsy: Transitioning from Teenager to Adult
September 7, 2018
Nancy Littke, PT
As people with cerebral palsy (CP) and their families know, CP is a disorder that affects the ability to move freely and easily. It is the most common movement disorder in children and is usually caused by damage to the infant’s developing brain before or during birth.1 The physical and cognitive effects of CP can vary greatly from individual to individual. For some, the ability to speak, learn, walk and move are only mildly affected, for others the affects are more severe.
People who are not familiar with CP may not realize that just because an individual has trouble moving or cannot speak well, it does not mean they have nothing to say or that they have limited intelligence.1 Approximately half of children with CP have a cognitive impairment or learning disability; however, this can range from very mild to very severe and is not necessarily related to their physical impairments.1
The advice and suggestions in this article are directed towards families of children with mild to moderate CP. The considerations when planning to transition to adulthood for people with more severe CP will be different as they may require more assistance, for the long-term.
Moving from teenager to adult
The move from teenager to adulthood can be a challenging time for any family. It is especially so for teens living with a chronic disease such as CP. People living with CP have special health-care needs. This means these young adults will face unique and ongoing challenges as they move away from the supportive and protected environment of childhood toward life as an independent adult. This time is also often difficult for parents, as they may be reluctant to “let go” and allow the young adult the space to manage their own care and make their own decisions.3
More individuals with mild to moderate CP are living well into adulthood and expect to have the freedom and ability to live independently.4 It is important that these young adults are enabled to:
Maintain their health, mobility and activity levels
Be as independent in their own self-care as possible
Participate fully in life as an adult4
This means there is an increased need to provide education, training and support for the individual living with CP, their family, potential employers, educational institutions and adult health care providers.3
What do these young adults say?
A research team asked several young adults living with CP to identify the main challenges they faced trying to navigate life as an adult. Their responses identified four common themes:3
A feeling of being “thrust” into adulthood. As a child, they felt there was usually a large and loyal support team in place to assist and guide them. As an adult, they often found they were suddenly expected to do things for themselves and many felt unprepared to do so.
Difficulties and uncertainties of how to navigate the systems and services that parents and health-care providers managed in the past. These systems include health care, education, vocational rehabilitation, insurance, mental health services and transportation or housing services. There is a sudden change in access to these services and basic living supports when one transitions to adult services. These young adults face the challenge of needing to know what questions to ask, where to ask them, and how to find community resources to support their independence.
The need to learn to understand and manage their own bodies as they change with age. These young adults have had years of involvement with health-care providers who understand CP and who have expertise in managing the care of children. Finding health-care providers who understand the needs of adults with CP and who can provide the care, answer questions, and provide the support and education these young adults are seeking can be a daunting and sometimes frustrating challenge. It can also be difficult for health-care practitioners to provide the needed support due to limited training and knowledge regarding the needs and challenges of adults living with CP.
Challenges dealing with the outside world, the stereotypes and prejudices faced by someone who appears to be “different.” These young adults have often been protected as children from society’s perceptions and reactions to individuals with a disability. Now out in the community participating in life as an adult, they will come face-to-face with this reality and may not have developed the coping skills needed to deal with these reactions.
In the words of one young person, "Too often people with CP are treated as though they are objects that need to be fixed. I don't want to be fixed, I am not broken. I just want the support I need to live my life."1
How to make the move from teen to adulthood as smooth as possible
The key to success is to start early and have a plan.
Childhood (guardians take the lead)
Planning for life as an adult with CP must start in early childhood with families and the health-care team focusing on life skills and independence in toddlers and young children. It is important for parents to surround themselves and their child with a team of health-care providers, rehabilitation practitioners, and educators that will focus on improving the child’s ability to move, play, socialize, and learn based on the individual child’s strengths and limitations.1
It may seem odd, but planning for the transition from teen to adult needs to start early. Calla is only a toddler, but her parents are hopeful that through physiotherapy and staying active, she will be able to “enjoy everything she wants to in life and doesn’t always feel a step behind”. Click here to see more of Calla’s story.
Teenager (teens and guardians share responsibility)
As any child moves into early teenage years they will experience normal physical and emotional changes, challenges, and frustrations. For children with a disability, this can be even more overwhelming. It is especially important that the entire support team are proactive during this time. The emphasis now should be more on encouraging independence and beginning to prepare both the child and the parent for life on their own or with as much independence as possible. This plan can include:1
Continuing to work with the school system to develop communication and life skills
Encouraging and rewarding independence
Developing coping skills
Encouraging the teen's active involvement in their own decision making and knowledge of their own medical and health needs
Utilizing available resources such as physiotherapy and other rehabilitation services to improve everyday function, mobility, and motor skills
Adult (guardians support, young adults lead)
The more prepared the teenager living with CP, their families and the health-care team are, the smoother the move to adulthood will be and the more confident and prepared everyone will feel as they move into this new stage of life. It is recommended to start this phase of the plan as early as age 16.1 The plan must be based on the unique goals and interests of the young adult and be designed to meet their individual needs.1 There is no one size fits all recipe for success; however, the Cerebral Palsy Guide1 provides some tips to help guide the teenager living with CP as they move into life as an adult.
Encourage the teenager to obtain an adapted driver’s license or develop the skills needed to use the public transportation system.
Prepare to change from having a specialized pediatric health care team to care providers, including physiotherapists, who may have less knowledge about the needs of adults living with CP.
Research colleges that accommodate and welcome people with disabilities.
Meet with a career counsellor to discuss areas of interest and learn about occupations that fit their interests, skills, and abilities.
Enrol in workforce development programs to help assess career plans and provide skill training.
Develop the skills needed to maintain a house or apartment, such as paying rent and bills.
Continue to practice life skills and establish independence.
The next step for parents: letting go
Letting go and moving from being responsible for a child’s care to supporting them as they navigate the world as an adult is possibly the most difficult step for parents and for the young person living with CP. Both the parents and the young adult will face this step in life’s journey with varying levels of excitement, fear, trepidation and/or anxiety. This part of the journey will occur differently for each young adult. Much depends on the individuals’ own readiness and abilities. There is no correct path to follow and no common endpoint to be achieved. Be patient and strive for as much independence as possible.
The Cerebral Palsy Association in Alberta provides information, programs, and resources to assist people living with CP achieve their maximum potential in growth and development and to have the opportunity to experience as much independence and participation in society as possible.
Physiotherapists, with knowledge of CP, will be an integral part of the health-care team working with and supporting individuals with CP and their families, from infancy through adulthood.
Cerebral Palsy Guide (2018) Available at https://www.cerebralpalsyguide.com/community/transition-into-adulthood Accessed July 26, 2018.
Ontario Federation for Cerebral Palsy (2015) A Guide to Cerebral Palsy. Available at http://ofcp.ca/wp-content/uploads/2016/05/Guide-to-CP-2015.pdf Accessed Aug 1, 2018.
Bagatell N, Chan D, Karrat Rauch K, Thorpe D. (2017) “Thrust into adulthood”: Transition experiences of young adults with cerebral palsy. Disability and Health Journal, vol10, Issue 1, pg 80-86. Elsevier Inc.
Liljenquist K, O’Neil ME, Bjornson K. (2018) Utilization of Physical Therapy Services During Transition for Young People with Cerebral Palsy: A Call for Improved Care into Adulthood. Available at Physical Therapy, pzy068, https://doi-org.login.ezproxy.library.ualberta.ca/10.1093/ptj/pzy068 Accessed July 26, 2018.
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Regulating Alberta's physiotherapy profession and acting as an association by providing member services.