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.
As spring approaches, millions of high school seniors get one step closer to their career and to becoming the person they have dreamed about growing into since they were children. Receiving college acceptance letters is one of the most profound experiences in a young adult’s life. Moving out of your childhood home and stepping into the real world is a majorly exhilarating life event.
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!
Welcome to the second part of my travel series! In the previous post, I wrote about how I found my love for traveling through my trip to Madrid and Paris. Looking back, not only do I realize that these trips took place during very different phases of my adult life, but they also mark the different phases of my CP in recent years. Although CP is the result of a non-progressive brain injury, many folks experience a decline in their physical abilities in their adult years — the inevitable effect of aging, not just for those with disabilities, but for everyone.
In the next couple of blog posts, I’ll write about some of my favorite trips that I took over the years. I’ll travel down memory lane of all the new places I explored in recent years and eagerly wait until my next trip.
My cousin, Reeva, had recently moved to Kyoto, Japan to learn Japanese for a year, and she convinced me to visit her there. I didn’t know anyone else living in Japan and Reeva was going to be there short term, so I couldn’t possibly pass up going! I was admittedly pretty nervous about traveling all the way across the world— a 24-hour long plane trip, including a layover— especially to a country that uses a language that isn’t remotely like anything I was used to. But, again, I wasn’t going to miss this once-in-a-lifetime opportunity.
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!
The National Institute of Neurological Disorders (NINDS) and the National Institute of Child Health and Human Development (NICHD) are hosting a national cerebral palsy research workshop that will help develop the next US strategic plan for cerebral palsy research, to be held virtually on August 17 and 18.
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.
Jen Lyman provides a parent perspective on powered wheelchair standing devices as it relates to Dr. Lisa Kenyon's research article.
Living with CP taught Dr. Kathleen Friel much about educating others about her disability and now about her life threatening diagnosis of Metastatic Breast Cancer.
Growing up with Cerebral Palsy I often wondered if I would ever experience my happily ever after. The fairytales my mom read me always followed the life of a beautiful princess falling in love with a handsome prince. You never read about a prince and princess in wheelchairs or with any type of disability for that matter.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
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.
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].
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
What do you do when you want to help your child but your local providers don't have the resources? You travel for treatment. In this personal story, Sophia's family describes their experiences traveling to Gillette Children's for treatment, including both neurosurgical and orthopedic surgeries.
Shelby Nurse discusses how pain has been part of the reality throughout her life. In this video Shelby talks about what strategies and pain management techniques have worked for her and how this have changed and different times.