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Primary Care for Children and Youth with CP
The American Academy of Pediatrics has updated its recommendations for Primary Care Providers to provide a "Medical Home" for children and youth with cerebral palsy. This comprehensive update gives primary care pediatricians the guidance they need to address the many needs that children and youth with CP experience and coordinate care across disciplines. The Cerebral Palsy Foundation has created a checklist to help guide you in raising your child with CP to living the healthiest life possible and ensure that you and your pediatrician are addressing all of your concerns.
A screenshot from the YouTube video, "Depression and Anxiety"
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A Resource Guide to Understanding Cerebral Palsy- Commentary on Collaboration to Support Health Literacy and Shared Decision Making
Understanding and managing healthcare and the healthcare system can be daunting for all of us. Attitudes of both providers and patients toward healthcare have experienced significant changes over the past few decades, shifting away from a focus on providers addressing problems as they arise, to more of a partnership and a shared decision-making process to maximize function, well-being, and reduce potential morbidities [1].
Collage of individuals and families with cerebral palsy wearing green t-shirts that say go green for CP
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Episode 3: Cerebral Palsy Health. Amy Bailes, PhD, PT, PCS: ABC's of CP
On this episode with Dr. Amy Bailes, we discuss the Gross Motor Functional Classification System (the GMFCS), the Gross Motor Functional Measure (the GMFM), and the corresponding motor curves. The GMFCS is an important classification system that is relatively easy to understand and it helps create a shared language and framework for understanding a person with CP’s physical function. This can be very helpful for patients, families and providers of all sorts, especially as it relates to both and acceptance and understanding of the diagnosis and family-centered shared decision making.
Photo of Amy Bailes in a black shirt on a black background
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Let’s Talk CP. We’re In This Together
Welcome! The Cerebral Palsy Foundation is connecting the Cerebral Palsy community one podcast at a time with “Let’s Talk CP” - the new podcast series bringing you education, conversation, support and much more on a variety of topics. Join Jason Benetti, White Sox and ESPN sports announcer, and friends, as we get real with families, clinicians and researchers asking the questions you want to know about your CP journey. We’re all in this together.
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Finding Your Passion
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
A screenshot from the YouTube video, "Finding your Passion"
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The Complexity of Acceptance
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
Representation of a person in a wheelchair using assistive technology to communicate with a group of people around them.
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Accessibility Features
Many of our products today have accessibility supports in them to the extent where we don't have to purchase anything else. It's already in there. Your phone, your tablet, your smart home devices. If you're going to look for these features on your devices, you can start in your settings. There should be something in there that says accessibility. Go in there, see what's available. The manufacturers have done a really nice job of describing these features right within the settings to give you a sense of what they're going to do.
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One Size Does NOT Fit All- Using Multiple Means For Communication
Let me tell you about multimodal communication. We, as typical communicators, all use many different strategies. We use speech, gestures, facial expressions, technology, and no-tech solutions. As communicators, we all size up the situation based upon our communication partners, the context, the environment and then we choose to use the most effective communication strategy.
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