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!
Dr. Bhooma Aravamuthan presents Understanding Dystonia: Diagnosis and Treatment at the 2020 AACPDM Community Forum. Moderated by Council Chair, Jen Lyman.
The Dystonia Care Pathway was created in 2016 based on best available evidence and is currently under revision. This link will be updated accordingly. The goal of the these Care Pathways is to help Health Care Professionals understand the research evidence on the topic so that they can make clinical decisions for the care of the individual.
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.
Plain Language Summaries are an excellent way to get a clear overview of clinical research. Our friends with Mac Keith Press and the AACPDM Community Council have worked together to choose articles that might be right for you.
The purpose of this study was to pilot an intervention of a sport-based youth development program modified for accessibility for children and adolescents with movement challenges, with the goal of community-based running participation using running frames.
Bimanual therapy, also referred to as intensive bimanual training, engages patients in active play or practice to improve the use and coordination of both hands. Bimanual therapy is different from similar unimanual therapies, like constraint-induced movement therapy (CIMT), because it promotes simultaneous use of both hands.
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.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.
Early powered mobility has been shown to improve cognition in children with multiple, complex disabilities.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
The purpose of this study is to explore the breast cancer screening experiences of women with CP with the aim of identifying factors that could improve screening rates for women with disabilities.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.
Though the initial insult or injury to the brain that causes cerebral palsy is non-progressive, aging with cerebral palsy and lack of physical activity during critical periods of development can impact biologic and metabolic function for adults with cerebral palsy.
Cohort-based whole exome and whole genome sequencing and copy number variant (CNV) studies have identified genetic etiologies for a sizable proportion of patients with cerebral palsy (CP). These findings indicate that genetic mutations collectively comprise an important cause of CP.
Access2CRT is here to empower advocates with the information and resources needed to promote and protect access to Complex Rehab Technology (CRT) access for people with disabilities and Cerebral Palsy.
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].
LittleWins harnesses the power of community to empower people with disabilities with the tools they need to thrive! From buying, selling, and donating medical equipment and supplies, to obtaining needed information and connecting with others – LittleWins is the one-stop community resource for families, parents, caregivers, in-home nurses, and all people with disabilities.
Almost all of us can vividly conjure up an episode of being bullied that occurred in our own lives. Hopefully, fewer of us will have memories of being the bully. These experiences and remembrances often are formative, perceived as hurtful, and can have a long term impact on our health and well-being. For me the memory of being the center of attention in a negative way never quite fades, but with age, the perspective changes to a challenge.