A child diagnosed with cerebral palsy, whether right at birth or later as developmental or motor issues become apparent, needs to have a complete life care plan. This plan includes a diagnosis, a team of experts and specialists, a thorough and ongoing evaluation, and a set of goals. Everything else leads up to the goals. What do you want for your child’s current life and future? The goals should answer this important question. Without goals, a life care plan will have a lot of details, but no direction. Rely on your trusted experts and your family to help you develop the goals that will give your child the best life possible.
The Purpose of Care Plan Goals
The life care plan for a child with cerebral palsy has several purposes and is important for several reasons. The main reason to have a care plan is to have something that acts as a roadmap for your child’s best life. It includes everything you need to give him the best life, from a full diagnosis and evaluation of his condition, limitations, and abilities, to an assessment of how much his care will cost over a lifetime.
The main purpose of having goals as part of the life care plan is to fuel the efforts you and your care team are making to give your child a great life and to enable him to live his best life. Goals may be short-term and health related, such as changing diet to make sure your child has no nutritional deficits. They may also be long-term like achieving living independence or finding a job.
Experts Help You Develop Goals
Your child’s care plan will include a diagnosis, evaluation, and the establishment of a care team, and should include these before you start to set goals. The team of specialists, caregivers, and supportive family and friends will help you decide on the goals for your child. Once you have those goals lined up—and these will change and adapt over time—you can start making a plan for achieving them, the real roadmap for your child’s care.
Developing goals will seem overwhelming, especially when the only goal you can really think about is having a happy, healthy child. This is why you need to rely on the expertise of your care team. People like educational experts, neurologists, nutritionists, and therapists can help you understand what is possible for your child and his future and will guide you as you create the goals.
As you develop your care plan and start to think about the goals you have for your child, it can help to break them down into categories. Your child’s condition is a complex one and organizing it in this way makes a complicated situation a little easier to understand.
- Managing the primary disability. Cerebral palsy is complicated, but the first goal you should consider is how to manage the primary condition. This is an overreaching kind of goal and one that your neurologist and pediatrician can help you develop.
- Managing complications. Cerebral palsy often comes along with co-existing conditions like seizure disorders and cognitive impairment. Setting goals for managing these is the next important step. From a goal of reducing the incident of seizures to catching up to peers in terms of cognitive development, there are many factors to consider.
- Improving mobility. Mobility is a major issue for most children with cerebral palsy. Some will be severely impaired and unable to walk, while others may have more minor disabilities. Goals that address how well your child moves are important for making him comfortable and giving him access to more opportunities throughout his life.
- Managing pain. Pain is also a common component of cerebral palsy. Stiff and jerky muscles, spastic muscles, and other pain will likely affect your child and setting goals for managing that pain will help him be more comfortable and be better able to achieve other goals.
- Working on communication. A child with cerebral palsy may have limitations that prevent him from communicating fully. This is especially true for a child whose vocal cords are affected by the condition. If your child struggles with speech and language, you will want to make goals that will lead to a greater ability to communicate, either through speech or alternative methods.
- Encouraging socialization. A child with any disability may struggle to socialize with peers. Connecting with others is important, though, so set goals that will encourage your child to interact in positive ways with family, friends, and peers.
- Educational goals. Education is crucial for all children, but if your child is facing cognitive impairments, learning disabilities, or physical impairments that make learning difficult, education is not as simple as it is for other children. Setting goals for learning, for special education, and for the future is important.
- Self-care and independence. An important all-around goal for a child with a disability is to achieve as much independence as possible. This may mean setting small goals—taking a bath without assistance—that lead up to bigger goals, like living completely independently.
- Maximizing quality of life. Ultimately, what all of these goals lead up to is giving a child the best quality of life possible in spite of any disabilities. Always keep this in the back of your mind while making other goals.
The life care plan that you develop for your child is an important road map for how he will live his life and how fulfilling and satisfying that life will be. It is a necessarily complicated set of documents, but goals should be simple.
Goals should also be changeable. As your child grows older you will meet and surpass goals and develop new ones. You will also be able to involve your child in setting those goals. He should be able to contribute and decide what he wants for his future. Goal setting is important for everyone to achieve success, but for a child born with a disability they take on new importance. Take goals seriously for your child and you give him the best chance at living a great life.