Adult Changing Tables, Federal Autism Panel, & Bleeding Disorders

This newsletter was sent June 28, 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.


Concord Mom Receives Advocacy Award, State Assembly Recognition For Work On Successful Adult Changing Table Bill

FVCA Project Leadership graduate Alisa Rosillo was given the Roz Wofsy Advocacy Award earlier this month by the Developmental Disabilities Council Of Contra Costa County in honor of her work on AB 662. She also received a certificate of recognition from the California State Assembly in commemoration of her selection as a Roz Wofsy recipient.

Signed into law on October 10, 2015, AB 662 requires that all “commercial places of public amusement” built after January 1, 2020 include and maintain at least one adult changing station for people with disabilities. Businesses that are renovated after January 1, 2025 must also upgrade their grounds to include an adult changing station.

Both Alisa’s children, Max, 15, and Leo, 17, require diaper changes and exceed the size and weight limit of a typical child’s changing table. Inspired by the wish to include her teenagers in regular outings all kids love, Alisa used the skills learned through the Project Leadership course to hone her voice and build her advocacy platform. Conversations and meetings with her local Assemblymember, Susan Bonilla, then led to the formation and passage of AB 662.

No stranger to the world of policy, Alisa worked with then-Assemblymember, now Congressman, Mark DeSaulnier to pass AB 1531 in 2007. This bill raises the fine for those abusing disabled parking spots and ensures these spaces and aisles are visibly painted blue and white.

Alisa’s advocacy also extends to educationshe’s been working within the Contra Costa School District to create K-12 classrooms that allow students who use speech generating devices to access curriculum. Her eldest son, Leo, will be aging out of the school system this year, so she’ll be looking at how these classroom models can continue in a bridge type program over the next four years.

On the changing table front, Alisa now hopes to take the topic to the national level with the backing of Congressman DeSaulnier. “Since bathroom issues are in the national spotlight, the timing is right and the fire is hot,” she says. “We have the momentum to take this to the next level.” For a look at Alisa’s past advocacy work, click here.


California Ranked #36 In Child Well-Being—Slight Increase From 2015’s #38

A new report from the Anne E. Casey Foundation and Children Now, Kids Count: State Trends In Child Well-Being, ranks California’s overall child well-being at #36 (with #1 being the best). The data examines four sub-sections: economic well-being (#47), family and community (#41), education (#35), and health (#11). The report found there have been fewer child deaths and teen pregnancies, a rise in the number of insured kids, and more high schoolers graduating on time. However, Generation Z children face “the weakest economic prospect in three generations,” stagnant wages, and high college costs. 23% of children live in poverty and 33% of parents lack stable employment—both figures have increased since last year. To read an article pulling further key points from the report (and the report itself), click here.

kids count


Federal Panel On Autism Seeks Public Comment

The Interagency Autism Coordinating Committee is looking for input from people with autism, family members, service providers, and advocates as they prepare to revise their strategic plan and update government priorities on autism research, services, and policy for the first time in ten years. The committee addresses seven topics: screening and diagnosis, the underlying biology of autism, risk factors, treatments and interventions, services, lifespan issues/surveillance, and infrastructure—comments should be related to one or more of these topics. To provide feedback, click here for a survey.

Survey: The Parent Experience Of Advocating For Children With Special Needs

California State University, East Bay is conducting a survey on the parent experience of advocating for children with special needs. The results will be used to inform the services and polices that serve this population. Survey participants will be entered in a drawing to win a $50 Amazon gift card. For more information and a link to the survey, click here (Spanish instructions here).


Sickle Cell Materials Now Available In Spanish And French, New Supplement

The National Center On Birth Defects And Developmental Disabilities recently translated key sickle cell fact sheets into Spanish and French. To access the new materials, click here. Topics include getting screened, supporting students with sickle cell disease, tips for preventing infection, and more. The American Journal of Preventive Medicine has also released a new supplement that covers the state of sickle cell related care in the United States. To read the supplement, click here.

Playing It Safe: Bleeding Disorders, Sports, And Excercise 

This publication from The National Hemophilia Foundation provides information to help children and teens with bleeding disorders safely participate in physical activity. It offers a list of illustrated stretches, safety ratings for many types of sports and activities, recommended strength training excercises, and more. To read the publication, click here.


Attacking Childhood Asthma: Care Coordination

A new white paper from the Health And Wellness Alliance For Children describes how care coordination played a key role in reducing pediatric asthma emergency room visits by 49% in Dallas, Texas. Three facets helped tie together care coordination: a standardized Asthma Action Plan, the mobile asthma-management app My Asthma Pal, and a community ambassador pilot program. To learn more about how these facets worked together and to read the white paper, click here (you can also create your own Asthma Action Plan and download the mobile app).

New Emergency Preparedness Curriculum For Families Of Children With Special Needs

The Eunice Kennedy Shriver Center worked with an advisory committee of parents of children with special needs to create a curriculum that increases preparedness knowledge and allows for successful planning. The curriculum includes a toolkit, tip sheets, and a template for a personal emergency plan. There’s also resources on how to share information about your child’s unique needs with first responders. To access the curriculum, click here.


TONIGHT: Taking Control: 12 Things You Probably Don’t Know About Seizures And Epilepsy

Sponsor: Epilepsy Foundation Of Iowa

More information and registration here.

June 29: Top Five Advocacy Priorities For Mended Little Hearts And Children With Congenital Heart Defects

Sponsor: Mended Little Hearts

More information and registration here.

June 29: Rational Pain Management In Children With Chronic Medical Conditions

Sponsor: The American Academy Of Pediatircs

More information and registration here.

June 29: Supported Decision Making And Financial Choices 

Sponsor: The National Resource Center For Supported Decision Making

More information and registration here.

June 30: The National Standards For Culturally And Linguistically Appropriate Services (CLAS) In Action

Sponsor: U.S. Department Of Health And Human Services Office Of Minority Health

More information and registration here.

June 30: The Use Of Health Information Technology To Improve Healthcare Delivery For Children

Sponsor: Agency For Healthcare Research And Quality

More information and registration here.

July 6: Utilizing A Care Manager In A Special Needs Trust

Sponsor: Friends Of Children With Special Needs

More information and registration here.

July 12: Overview Of Application Process For Request For Proposals On “Developing Goals And Strategies To Improve Care Of Children With Chronic And Complex Health Conditions”

Sponsor: The Lucile Packard Foundation For Children’s Health

More information and registration here.

July 14: Advancing Health Through Accountable Communities: A Conversation With States

Sponsor: The National Academy For State Health Policy

More information and registration here.


Families Face Indefinite Wait For Services

Down Syndrome Link Seen As Key To Understanding Alzheimer’s

Facebook Offers Tools For Those Who Fear A Friend May Be Suicidal

Apple To Add Fitness Tracking For Wheelchair Users To Apple Watch

What Life Is Like With Tourette Syndrome

Testing Drugs On Mini-Yous, Grown In A Dish

How To Transition Special Needs Students To The Workforce

No Amount Of Lead Safe For Children: AAP Calls For Stricter Regulations”  

Skateboard Clinic Teaches Kids With Disabilities Life—And Shredding—Skills

As Childhood Diabetes Rates Rise, So Do Costs—And Families Feel The Pinch: Study

Doctors Urged To Address Needs Of Females With Disabilities

Iowa Family Goes To Capitol Hill To Help Kids With Special Needs

Mom’s Effort Helps Add Defibrillators Throughout Simi Valley

Meet The Man With Cerebral Palsy Redefining ‘Disabled’ In Colombia

Celebrating 20 Years Serving The Chinese American Special Needs Community

Kids With Autism Are Using Google Glass To Learn Emotions

Telehealth Helps Diagnose A Potentially Lethal Heart Defect In 9-Month-Old

Summer Fun, Parent Advocacy, & California Children’s Services Hearing

This newsletter was sent June 14, 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.


Health Summit Highlights Report And Panel PowerPoints Now Available

Family Voices Of California’s 14th Annual Health Summit And Legislative Day took place on March 14-15 and brought together families of children and youth with special health care needs, professionals from government agencies, and health care providers/advocates. For a summary of activities, panel presentations, a legislative day recap, and participant feedback, click here to browse our Highlights Report. In addition, PowerPoints from our three panels on California Children’s Services, Medi-Cal Managed Care, and mental health can be found in full here.


San Leandro’s Family Resource Navigators Completes 2016 Project Leadership Training

Family Resource Navigators (FRN) completed their recent round of Project Leadership training with a total of nine graduates (seven Spanish-speaking, one Chinese-speaking, and one English-speaking). The Project Leadership curriculum was developed by Family Voices Of California and introduces parents and caregivers to the nuts and bolts of advocacy in a series of seven trainings. Parents learn how to partner and engage in all levels of public advocacy on behalf of children with special needs. FRN’s training was sponsored by Alameda County First Five and all graduates will go on to join the Help Me Grow Family Advisory Committee. The curriculum is available for download on our website and is easily adaptable to your specific advocacy needs: FRN chose to include more information on early childhood developmental screening, Help Me Grow, and local advocacy. To access the curriculum, please click here.


Parent-Penned Op-Ed About Autism And Aging Out Of The School System Published On California Health Report

This April, Family Voices Of Californias’ Project Leadership graduates attended an op-ed writing workshop led by California Health Report’s Daniel Weintraub. The first piece out of this seminar is by Pam Raymond and deals with the issues children with autism (and their parents) face as they age out of the school system. To read the op-ed, click here.

Hearing June 21 To Discuss California Children’s Services Redesign Bill (SB 586)

Senate Bill 586 addresses the future of the California Children’s Services (CCS) program and the state’s proposed plan to move some of the children covered under CCS to managed care plans. Recently, a collective group of advocates proposed revised language to the bill which can be read here. The Assembly Committee On Health will address SB 586 on June 21 in Sacramento. For more information on how you can listen to the hearing, click here.


Summer Fun For Children And Youth With Special Needs: Accessible Travel, Camps, Family Movie Night, And Summer Reading

If you’re planning on taking a summer trip this year, the AXS mobile phone app can help you find, rate, and share wheelchair accessible locations all over the country. The app was developed by a filmmaker after he was diagnosed with multiple sclerosis and has since helped galvanize groups for ‘Mapathons,’ divide-and-conquer type marathons where people map select neighborhoods in one day. If your child enjoys summer camp, here’s a list of special needs camps in Southern California and the Bay Area as well as a catch-all list with a breakdown of amenities and activities and an autism-specific list from Autism Speaks. Lastly, if your family is looking to have a night in, check out this list of award-winning films about kids with special needs as well as this list of disability-themed children’s books.


Updated Edition Of First Steps: A Parent’s Guide To Prader-Willi Syndrome

First Steps is a resource for parents, by parents, that has helped hundreds of families figure out what to do immediately after a Prader-Willi Syndrome diagnosis. The new edition includes 16 pages of updated insights and strategies for coping and thriving, information about symptoms and treatments, and links to resources. To access First Steps, click here.

New Series Of Ear, Nose, And Throat Videos From

Developed by the American Academy Of Pediatrics and the American Society Of Pediatric Otolaryngology, the five new videos are titled, ‘Could My Child Have A Breathing Problem?’, ‘Does Your Child Snore?’, ‘Noisy Breathing In Children,’ ‘Treating Ear Infections In Children,’ and ‘What To Do If You Discover A Lump On Your Child’s Neck.’ To access the videos, click here. Related: an article on hearing loss in children with Down Syndrome.

Cystic Fibrosis Foundation Releases Annual Report

The Cystic Fibrosis Foundation released their annual report which summarizes key research highlights including the Federal Drug Administration’s approval of Orkambi, the first combination drug to treat the root cause of cystic fibrosis, and Relizorb, a cartridge containing digestive enzymes that helps break down beneficial fats in supplemental nutrition. Other sections address patient care (with a large focus on areas that need improvement), access and policy, community partnerships, fundraising, and communications. To read the report, click here


The Children’s Partnership: The Affordable Care Act And Children’s Coverage In California: Our Progress And Future

This report from the Children’s Partnership looks at health reform advancements made in California and details what’s necessary to continue to support a healthy future for all children. One suggested improvement for children with disabilities concerns the Children’s Health Disability Prevention (CHDP) program, a developmental screening program for low-income children that has a gateway to Medi-Cal enrollment. Since the CHDP application information can serve as an initial screening for Medi-Cal eligibility and provides temporary coverage, the report suggests that the CDHP gateway could offer express eligibility and provide ongoing coverage. To read the report, click here. Related: an article on what parents of children with disabilities need to know about changes to the Affordable Care Act.


Webinar Recording: Family Participation In Discharge Planning: Voices Of Patients, Parents, And Advocates

To view the recording, click here.

June 15: ADHD: The Taming Of The Shame

Sponsor: Attention Deficit Disorder Association

More information and registration here.

June 15: Targeting Social Influences That Shape Health Literacy In Communities

Sponsor: Healthy People 2020

More information and registration here.

June 16: Improving The Safety Of Clinical Alarm Systems

Sponsor: UCSF Benioff Children’s Hospital

More information and registration here.

June 17: I’m A Parent Of A Young Child With ADHD: Why Do I Need Training In Behavior Therapy?

Sponsor: National Council For Behavioral Health

More information and registration here.

June 21: Future Planning For People With Dual Diagnoses Of Disabilities And Mental Health Needs: Strategies And Challenges

Sponsor: The Arc

More information and registration here.

June 22: Investigating Autism’s Skewed Sex Ratio

Sponsor: Spectrum

More information and registration here.

June 22: Eliminating The Use Of Seclusion And Restraint In Youth With Disabilities And Co-Occurring Behavioral Health Disorders

Sponsor: The National Association For The Dually Diagnosed

More information and registration here.

June 28: The Attorney Client Relationship: Bridging The Gap Between Attorneys, Clients With Disabilities, And Their Families

Sponsor: The Arc’s National Center On Criminal Justice And Disability

More information and registration here.

June 29: Recruiting, Training, And Retaining Members For Engagement On Consumer Advisory Committees

Sponsor: Resources For Integrated Care

More information and registration here.

June 30: Siblings As The Next Generation Of Advocates For People With Disabilities

Sponsors: Children’s Hospital Los Angeles and University Of Southern California 

More information and registration here.


San Diego Mother Mourns While Mental Health Gaps Persist

Amid Intense Isolation, Stirrings Of Hope for Families With Rarest Genetic Mutations

Pediatric Research: Too Much Noise A Problem For Premature Babies

A Good Night Sleep May Shorten Kids’ Hospital Stays

Freed By Court Ruling, Texas Medicaid Again Orders Pay Cuts For Disabled Kids’ Therapists

Drama Classes May Boost Social Skills In Kids With Autism

New Sleep Duration Guidelines For Children Released, Backed By AAP

Blacks Die From Asthma At Steep Rates, But Are Absent From Many Studies

A Riding Program For Disabled Children Finds Stables It Can Call Home

Autism Documentary Heads to Theaters

North Carolina Becomes First State To Create Rare Disease Advisory Council

Kids With Disabilities 2x More Likely To Be Suspended From School

George Washington University Teaches Policy Alongside Medicine To Prepare Medical Students For Real World

New Bill Would Give ER Doctors Authority To Choose Between 72-Hour Hold For Mental Health Patients, More Therapeutic Outside Treatment

Hospital Discharge Webinar, Virtual Hydrocephalus Event, & Oral Health

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.


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.


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.

eye contact


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.

oral care

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).



May 31: Speech, Language, And Reading: A Starter Guide For Parents

Sponsor: Morneau Shepell Children’s Support Solutions

More information and registration here.

June 2: Supporting Students With Dyslexia: Standards, Accommodations, And Strategies

Sponsor: Center On Technology And Disability

More information and registration here.

June 2: State Approaches To Providing Health-Related Supported Services Through Medicaid

Sponsor: Center For Health Care Strategies

More information and registration here.

June 3: Understanding The Undiagnosed Diseases Network: An Overview

Sponsors: National Organization For Rare Disorders and the Undiagnosed Diseases Network

More information and registration here.

June 8: Changing Practice: How To Understand And Address Social Factors That Shape Child Health

Sponsor: National Center For Medical Home Implementation

More information and registration here.

June 9: Family Participation In Discharge Planning: Voices Of Patients, Parents, And Advocates

Sponsors: Lucile Packard Foundation For Children’s Health and Boston Children’s Hospital

More information and registration here.

June 20: Addressing Health Coverage Inequities Among Children With Special Health Care Needs In Your State

Sponsor: The Catalyst Center

More information and registration here.

Upcoming Weekly Webinar Series: “Pink Book Wednesdays:” The Epidemiology And Prevention of Vaccine-Preventable Diseases (June 1 – September 21)

Sponsor: The Centers For Disease Control And Prevention

More information and registration here.


You Mean I Don’t Have To Show Up? The Promise Of Telemedicine

Humans Of New York: A Collection Of Photos And Stories On Childhood Cancer

Assistive Technology Helps Kids Soar At Jersey City School

Disability Providers Get Reprieve From New Wage Rule

Ontario Youth With Disabilities Demand A Say In Decisions Affecting Their Lives

Supporting Children Who Serve As Caregivers

The Other Bathroom War: People With Disabilities

Massachusetts General Hospital To Build Virtual Down Syndrome Clinic

One Parent’s Twitter Campaign To Get Her Daughter A Wheelchair

Can Experimental Marijuana Treatments Save A Young Boy With Epilepsy?

Lawmakers Approve Audit Of Disabled Parking In California

Some Oakland Parents Worried About Moves Planned For Schools’ Special Ed Classes

Orange County: Severe Shortage Of Foster Homes For Children With Special Needs

Valley Hospitals Spending Millions To Build Pediatric Networks

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