This newsletter was sent May 31, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

NEWS

Registration Open For Virtual Participation At National Hydrocephalus Conference (June 16-19)

Sponsored by the Hydrocephalus Association, this year’s conference theme is “Together Towards Tomorrow.” The conference aims to provide resources and tools for navigating the medical, educational, and social challenges of living with hydrocephalus. Although the event is taking place in Minnesota, you may register as a virtual participant for access to track sessions and recordings. For more information and registration, click here. Also, to check out a new “Ask The Expert” video on shunt revisions from the Hydrocephalus Association, click here.

Family Voices Of California To Take Part In Upcoming Webinar: “Family Participation In Discharge Planning: Voices Of Patients, Parents, And Advocates” (June 9)

Family Voices of California (FVCA) will be joining the Lucile Packard Foundation For Children’s Health and Boston Children’s Hospital’s Teen Advisory Committee for a webinar that will focus on understanding and improving the family hospital discharge experience. The conversation will center around current efforts to engage families in the discharge process, common sense practices that facilitate dialogue between families and clinicians, and pragmatic steps that hospitals can take to improve the discharge experience. FVCA Project Leadership State Liaison Allison Gray and Project Leadership graduate Elana Ford will provide parent perspectives. To register for the webinar, click here.

Children With Disabilities, Medical Complexities Living In Nursing Homes Entitled To Education Services Under Individuals With Disabilities Act

The U.S. Department Of Education recently sent a letter noting that states must identify their school-aged children with disabilities who are living in nursing homes (nearly 5,000 nationwide) and provide them with the education services they’re legally entitled to. For an article on the topic, click here. In a related piece, a New York senator is calling on the federal government to fully fund the Individuals With Disabilities Act. Read more here.

The American Academy Of Pediatrics Recommends At Least One Nurse Per School

The American Academy Of Pediatrics (AAP) has amended a 2008 policy statement which called for the ratio of school nurses for the healthy student population to be 1:750 and 1:225 for students who need daily assistance. Given that the job of the school nurse has evolved to include chronic disease management, emergency preparedness, behavioral assessments, and monitoring more children with special needs, the AAP now recommends that each school have at least one full-time registered nurse on duty. To read the AAP press release, click here. To read a related California Healthline piece on California’s shortage of school nurses, click here.

GIVE INPUT

Study: Shunt-Related Headaches In People With Hydrocephalus

The Albert Einstein College Of Medicine is studying the effects of hydrocephalus on the stiffness of the brain and its association with important clinical measures such as shunting history and headache severity. Participants must be 6-25 years old. Even if you cannot travel to New York for the in-person component of the study, you may still be eligible to take a 20-minute online survey and be paid $10. For more information, click here.

Male Subjects Needed For Study On Eye Contact And Social Skills

Stanford University’s Center For Interdisciplinary Brain Sciences Research is conducting a study to evaluate eye contact and social skills in males with disabilities ages 8-15. Eligible participants will travel to Stanford for 4-5 days (all expenses paid) and receive a $100 honorarium as well as a copy of their cognitive test results. For more details and to take a preliminary survey to determine eligibility, click here.

RESOURCES

100 Day Toolkit For Newly Diagnosed Families Of Young Children With Autism

This new toolkit from Autism Speaks was created specifically for families of children ages 4 and under to make the best possible use of the first 100 days following their child’s autism diagnoses. Subjects covered include getting your child services and how to create a week-by-week care plan. You can download a PDF version or request a free hard copy to be picked up at your nearest FedEx location. For more information, click here.

California Disability Voter Guide From Respectability

With over 5.9 million people with disabilities eligible to vote in California, this guide provides a great outline on where candidates stand on key disability issues. Bernie Sanders and Hillary Clinton have provided complete answers to the set of 16 questions; Donald Trump has yet to respond. Other Republican candidates who have since dropped out of the race have provided full or partial responses. To access the guide, click here.

Practical Oral Care For Individuals With Developmental Disabilities

The National Institute Of Dental And Craniofacial Research offers a wealth of knowledge for both health professionals and caregivers on addressing oral health in people with disabilities. In their “Practical Oral Care” series, they discuss health challenges and strategies for individuals with autism, cerebral palsy, down syndrome, and intellectual disabilities. Many of the sections have helpful detailed illustrations and discuss preventative measures to common oral health issues specific to each disability. To access the series, click here.

Updated Drowning Prevention Site From The Department Of Developmental Services

With summer around the corner, it’s important to prioritize and teach the rules of water safety as drowning is the leading cause of injury-related death in California among children under 5. The Department Of Developmental Services has updated its Drowning Prevention resource page with a letter from Governor Brown, an interactive pool safety song, and information from the American Academy Of Pediatrics on water safety. To access the website, click here.

Handbook: Making My Way Through College: A Guide For Students With Disabilities

The National Collaborative On Workforce And Disability For Youth has created a handbook geared towards any student with a disability who is pursuing a degree or credential at a two or four-year university. Topics include getting to know your school, connecting with other students who have disabilities, and creating your individualized plan. To access the handbook, click here.

National Disability Navigator Resource Collaborative Video Series: Health Insurance Jeopardy Round Two

When it comes to choosing a plan in the marketplace, consumers need to make sure they are asking the right questions about what’s being offered in order to make an informed choice. In a follow up to round one of their video series, the National Disability Navigator Resource Collaborative has released round two, which focuses on the health needs of individuals with mental illness and intellectual disabilities (plus more) and the issues faced when enrolling them in the marketplace. To access the video series, click here.

Asthma And Allergy Foundation Of America: Ask The Allergist & Community Forums

If you have a question about your child’s asthma or allergies, you can email an allergist via the “Ask The Allergist” section of the Asthma And Allergy Foundation Of America’s (AAFA) website. To access the page, click here. The AAFA also has a new online community for asthma and allergic diseases which can be accessed here (a similar community on kids with food allergies can be found here).