Cerebral Palsy in adults: What to expect when transitioning into adult care services
The majority of cerebral palsy diagnoses are made within the first two-five years of life. Whilst the condition is nonprogressive, it can put considerable strain on the body which, in turn, may lead to difficulties in later life.
However, there are a variety of therapies and treatments available to help someone with a diagnosis live a fulfilled and independent life.
Care for cerebral palsy differs for everyone and as you move from childhood to teenage and adult life, the support and services you may benefit from will change.
What to expect when moving into adult care services
Transitioning from child care to adult care can feel quite daunting, however, if planned carefully and in advance, the process should be smooth.
Whether you are considering attending university, seeking employment or looking to move into your own home, transitioning into adult cerebral palsy services can help to ensure that you have the knowledge and confidence to hit these milestones.
When will the transition period begin?
Preparation will begin in early adolescence, around the age of 14, although you can dictate when you are ready for the transition to start.
The initial aim of the transition is to ensure you have the education, confidence and social skills required to take on employment, manage money, attend university and reach independent milestones such as living alone.
Your transition plan
The plan will consider childhood challenges that will still be relevant in your adult years, as well as a variety of services that you may benefit from as your needs change.
The plan will be put together by your named worker. This will be your main point of contact and will be someone you already know and have a relationship with, such as your GP, social worker, therapist or nurse, etc.
The plan should set out what is important to you (such as spiritual, social and cultural aspects of your life), what you are currently able to do and what you hope to achieve over the years. As ability and aspirations vary from person to person, it is essential that this plan is fully tailored to you and that you are involved in the process.
What should be included in your transition plan
Even though the transition plan will be unique to you, some aspects should be included as standard. These include:
- Identifying a named worker to be your point of contact and to facilitate the transition.
- A variety of adult services that are accessible both locally and regionally.
- Access to healthcare professionals with experience in managing cerebral palsy.
- Details of the current challenges cerebral palsy poses to you, such as communication, mobility, nutritional issues and the level of pain and discomfort you currently feel.
Adult cerebral palsy frequently asked questions
Below, we have answered some common questions surrounding transitioning into adulthood and living with cerebral palsy.
Can cerebral palsy get worse in adults?
Although a permanent disorder, cerebral palsy is non-progressive; so you can expect your symptoms to remain the same throughout your life. However, the condition will put considerable strain on your body, which can result in a variety of challenges that may worsen over time. These include:
- Chronic pain
- Premature aging
It is important that your care plan is reviewed regularly to ensure that you have access to flexible support that changes with your needs.
How long do adults live with cerebral palsy
Because cerebral palsy varies from person to person, life expectancy can also be varied. However, most people who are diagnosed reach adulthood, with some mirroring the same lifespan as those without a diagnosis.
Factors that may impact this include:
- Additional impairments or conditions
- Cognitive functioning
- Level of severity
- Frequent and severe seizures
- Difficulties in feeding
There are a variety of treatment options and it is important to discuss the outlook for your particular diagnosis with your doctor, who will be able to offer more accurate information based on your particular situation.
Can a person with cerebral palsy live on their own?
Many people who are diagnosed with cerebral palsy are able to live on their own.
For those with more severe cases, where cerebral palsy makes living alone difficult, there are options that will help you maintain your independence. This could range from assisted living and shared accommodation to staying with relatives.
Whatever form of accommodation you choose, investing in cerebral palsy care can greatly improve your daily life.