If you or your child have cerebral palsy where the cause is unclear, there are no-cost genetic tests and no-cost genetic counseling that can help answer some of these questions.
The 2023 Health Summit will share new pathways for translating knowledge into practice for the Implementation of early detection and intervention for cerebral palsy from the best researchers and clinicians in the field.
Speech impairments like dysarthria are common in children with cerebral palsy (CP) which can greatly affect participation across environments. Our study examined how speech impairment severity changes over time in 101 children with CP at 4, 6, 8, and 10 years of age.
When a person is looking for a way to communicate in alternative ways, they need to find something that really works for them. They need to try to find a voice that sounds natural. They want to try to find a way to be efficient. They want to be able to communicate as normally as possible, even though they're not using their biological voice.
Dysarthria is a motor speech disorder that affects how clear and understandable a person’s speech is. Between 50-90% of people with CP have dysarthria.
This study highlights caregiver knowledge and preferences to understanding the GMFCS and how that information should be relayed from clinicians.
The GMFCS, MACS and CFCS are all tools used by therapists and researchers to help classify the functional capabilities of individuals with CP. This research article provides evidence of their stability over time.
The GMFCS can be a helpful tool in clinical and research use and has been shown to be stable and accurate over time. It can also help individuals and families better understand cerebral palsy.
CPF Executive Director Rachel Byrne and speech therapist, Kristen Allison, PhD, CCC-SLP discuss communication and Cerebral Palsy.
Students with disabilities often need extra support throughout the day to access their environment, the academic materials, and learn alongside their peers. A Personal Care Attendant in the school setting is often utilized to support the students needs.
Children and teens with cerebral palsy and other disabilities may need the assistance of an individual who has a background in healthcare and the skills to provide the services essential to quality care.
Personal Care Attendants for adults with cerebral palsy and other disabilities provide a variety of essential functions that ensure safety, health, wellbeing and overall impact quality of life.
An employment agreement spells out the rules, rights and responsibilities for both the Personal Care Attendant (the employee) and the individual with cerebral palsy or family who is hiring the Personal Care Attendant.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
On this episode, I have the honor of talking with Wendy Pierce, MD, a pediatric physiatrist at Colorado Children's Hospital about physiatry, also known as Physical Medicine and Rehabilitation. This fantastic field of medicine can be helpful for individuals with cerebral palsy across with lifespan, but it has a confusing name and sometimes a confusing job description. So we set out to help listeners better understand what a physiatrist does.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
Our “Let’s Talk CP” podcast series kicks off with a great conversation about what questions to ask your child’s clinician when your child has cerebral palsy. How should you prepare for a medical appointment? What questions should you ask? Should you get a second opinion? Join Cerebral Palsy Foundation host, Cynthia Frisina as she shares candid talk, lessons learned and great advice with fellow moms, Wendy Sullivan and Jennifer Lyman. This episode is made possible with the support of Ipsen Biopharmaceuticals.
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.
The typical cognitive assessments that are used for children require them to be able to use their hands to point to pictures or hold puzzle pieces.
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.
It's really essential to understand how brain function works to really tap into how learners learn.
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.
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
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.