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Children's Waivers and More
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.
Map of the United States in Purple
RESNA (Rehab Engineering and Assistive Technology Society of North America)
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.
Logo for RESNA with a red flag and black lettering that says Rehabilitation and Assistive Technology Professional Society of North America
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
How to Get Quality Sleep with CP and/or Chronic Pain
I suppose there has to be one silver lining that comes out of being sheltered in place for months on end (due to Covid-19): I’ve finally been catching up on sleep. The recommended nightly hours of sleep is between 7 and 9 hours . For me, getting a good night’s sleep has been the best way to regain a sense of control and ease during such unnerving times. Not only does sleep improve mood and
Text: How to Get Quality Sleep with CP and/or Chronic Pain, black and white photo of a woman in a wheelchair looking out a window.
7 Tips Daily Mindfulness
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
Drawing of a person meditating with doodles of suns and happy faces against a green background
Top 5 Reasons Not To Hate The NICU
PTSD can be common in parents after a child with Cerebral Palsy has left the NICU. One of the hardest days of my life as a NICU parent was not what I would have expected it to be. It was the day I went home without my baby, after spending every waking moment since my emergency C-section by his incubator. I never knew I had a dream about what it would be like to have a baby until that dream was taken away.
Baby in an incubator in the NICU touching parent's hand