People with disabilities represent more than 27% of the United States adult population, making them the single largest minority group in the country. This new NIH designation, new research program and update to NIH mission are actions to ensure inclusion of people with disabilities.
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.
The bipartisan, Cerebral Palsy Research Act, is introduced by Congressman Steve Cohen of Tennessee. Read more here:
The 2023 Appropriations Act has passed and thanks to advocacy by the cerebral palsy community, it includes the strongest language and funding yet for cerebral palsy!
Understanding different gait patterns is important because it can determine what interventions will potentially be the most effective.
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.
Dr. Bhooma Aravamuthan presents Understanding Dystonia: Diagnosis and Treatment at the 2020 AACPDM Community Forum. Moderated by Council Chair, Jen Lyman.
Spastic cerebral palsy is the most common type of CP. People will experience increased muscle tone and their movements may appear stiff or awkward.
People who have dyskinetic cerebral palsy experience involuntary movements that are difficult to control. These movements can be slow, twisting and writhing, or rapid and jerky, and can impact movement in the hands, arms, feet, legs and even the face or tongue.
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.
Medicaid Waivers, Katie Beckett or TEFRA are all forms of benefits that an "waive" medicaid financial restrictions for parents of children who have a developmental disability acquired prior to the age of three. Kidswaivers.org has provided a comprehensive, interactive website of all available medicaid waiver programs by State across the US.
NCART Standing Device Funding Guide contains all the information needed to choose, measure, and write a letter of medical necessity for a standing device.
This IEP Checklist should provide helpful support when preparing for, setting goals, maintaining communication and achieving student success!
Complex Rehabilitation Technology serves to enhance the lives of individuals who utilize it with the goals of maximizing health, wellbeing, participation and independence.
RESNA (Rehab Engineering and Assistive Technology Society of North America) is a great place to find highly qualified rehab and assistive technology professionals in your area. They also have provided their research to help providers and the families they serve make decisions about powered mobility for young children.
The Cerebral Palsy Foundation has created a factsheet to help guide you in understanding and treating pain with CP. This fact sheet has been created for individuals with cerebral palsy to provide basic guidance surrounding common causes and potential treatment of pain.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
The Cerebral Palsy Foundation has created a checklist to help guide you in living the healthiest life possible. This checklist has been created for adults with cerebral palsy to provide basic guidance surrounding routine and additional screenings that should occur as part of your primary and preventive care.
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].
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.
Many children with cerebral palsy (CP) have difficulty controlling saliva. Drooling varies in severity and can be distressing for the children, families and caregivers. Chronic drooling is referred to as Sialorrhea and occurs as a result of limitations in a person’s ability to control and swallow oral secretions.
A person’s gait is dependent on the interaction between the nervous, musculoskeletal, and cardiorespiratory systems and has many influences.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.