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 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!
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!
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.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
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].
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
I spent many years and many hours learning how to make the body work better, how to bring it out of pain. But that's not the human being alone.
Up to 50% of adolescents with cerebral palsy have an intellectual disability, as well as a physical disability. Adolescents with intellectual disabilities still need sexual health education, they just need it in a way that's more individualized so that they can understand it and use it.
One of the things that was identified through research is that patients with cerebral palsy have higher rates of depression and anxiety than you would see in the general population.
Everybody tells stories, and that includes people who use communication systems. To ensure success and the ability to participate we need to make it as easy as possible. So that we can tell stories whenever we want, wherever we want, to whomever we want, and in a really easy way, so we can be successful.
My name is Nathalie Maitre, I work at Nationwide Children's Hospital. I'm a physician and a researcher