Study links gene to children with physical and intellectual disabilities

Source: The Translational Genomics Research Institute Modern science and data sharing converged to underpin a study led by the Translational Genomics Research Institute (TGen), an affiliate of City of Hope, that identified a gene associated with a rare condition that results in physical and intellectual disabilities of children. The results, published today in the American Journal of Human Genetics, suggest that rare variants in the gene DDX6 are associated with a significant disruption in the […]

Sylvia Colt-Lacayo got a full scholarship to Stanford. But can she afford the care she needs to go?

By Jenny Gold / Kaiser Health News Sylvia Colt-Lacayo is 18, fresh-faced and hopeful as she beams confidence from her power wheelchair. Her long, dark hair is soft and carefully tended, and her wide brown eyes are bright. A degenerative neuromuscular disease, similar to muscular dystrophy, has left her with weak, underdeveloped muscles throughout her body, and her legs are unable to support any weight. Each time she needs to get in or out of her […]

At NCD’s recommendation, all U.S. dental schools will train students to manage treatment of people with intellectual, developmental disabilities

As recommended by the National Council on Disability (NCD), all U.S. dental schools must now revamp their curricula and training programs to be inclusive of patients with intellectual and developmental disabilities (ID/DD). The Commission on Dental Accreditation (CODA) recently passed votes requiring dental schools to now train their students in managing treatment of patients with ID/DD. Previously, patients with ID/DD were largely unable to obtain dental care treatment because dental students were simply not required […]

Trump Extends Funding Money Follows the Person Program

The House passed H.R. 3253, the Empowering Beneficiaries, Ensuring Access and Strengthening Accountability Act.  This bill funds the Money Follows the Person program through Fiscal Year 2023.  It also extends the HCBS spousal impoverishment protections through March 31, 2024.  We are pushing the Senate to provide long-term funding for MFP by passing H.R. 3253 or the EMPOWER Care Act.  It is critical Congress act before funding for the program runs out in September 2019. EMPOWER […]

Neurodiversity Summit explores autism as a difference, not a disorder

Expert speakers and panelists offer their knowledge and experiences (SACRAMENTO) —The UC Davis MIND Institute and Center for Mind and Brain hosted their first Neurodiversity Summit Friday. The all-day event delved into a movement that reframes the conversation about autism. Instead of thinking about it as a disorder, neurodiversity advocates regard it as a difference in the way that some people’s brains work. Although the larger movement includes other differences such as deafness, summit organizers […]

Strategies for July 4th for Special Needs Kids

The 4th of July is an exciting holiday, but for special needs kids it can all be a bit too much. Think about it: fireworks are basically EXPLOSIONS! Things blowing up can be challenging for someone who is sensitive to loud noises. Also, fireworks can’t happen until nightfall, which may mean staying up late. For typical kids that may be a treat, but some special needs kids find a disruption in daily routine very upsetting. […]

New federal research examines guardianships of people with intellectual, developmental disabilities, finds school-to-guardianship pipeline

WASHINGTON, D.C. – In a recently released report, new federal research examining guardianships of people with intellectual and developmental disabilities (ID/DD) finds data supporting the existence of a “school-to-guardianship pipeline” that results in people with ID/DD being placed under guardianships from their earliest years of majority rather than exploring use of less restrictive decision-making supports. Under guardianship, an individual can have the following rights removed: the right to marry; the right to determine one own’s […]

Parent and Educator Guide to School Climate Resources

This Guide, produced jointly by the Department’s Office of Elementary and Secondary Education and the Office of Special Education and Rehabilitative Services, provides best practices and includes resources school leaders and teachers can utilize as they work to achieve a positive school climate, reduce disciplinary concerns, and enhance school safety. Additionally, the Guide provides information to teachers and school leaders on how they can receive support from the Department’s two technical assistance centers dedicated to […]

Study helps clinicians and families anticipate surgeries for individuals with spina bifida

In a study appearing in PediatricsExternal, CDC scientists and other researchers describe the lifetime occurrence of common surgeries and four key health outcomes in individuals with spina bifida. This information can help clinicians and parents know what surgeries and common health issues may be experienced by individuals with spina bifida as they age. In this study, researchers found that Individuals will all types of spina bifida commonly underwent brain and spine surgeries. More than five […]

The Family Resource Network is Awarding Multiple Scholarships for 2019!

The 2019 Autism Family Services of New Jersey Scholarship Program is open to New Jersey residents with a diagnosis of Autism. This scholarship is unique since it allows graduates pursuing a college, university, technical, trade, or vocational school level education to apply. The AFSNJ Scholarship is not solely based on academic achievement. Meaningful community volunteerism, participation in extra-curricular activities and essay response will all be considered when choosing recipients for these scholarships. Candidates do not […]